Friday, May 26, 2006

Still Pregnant

We were so worried that I wouldn't make it to 37 weeks and now I'm almost to 39 weeks! (May 30) I really do hope that it's soon. I'm getting antsy about it. Besides, I really don't want the baby to get too big. Though I am confident that I can birth a big baby, I really want to avoid it if I can. So, my midwife gave me a list of things to bring on labor. I haven't tried using herbs or acupuncture yet- I will if I go past 40 weeks. I've tried using a breast pump for 2 hours, applying castor oil and a heating pad to my belly, eating foods with curry in it, walking for 2 hours, and having sex twice a day. (Honestly, that last one is the hardest to do. I have to get in the mood, I'm usually tired, and Eli has to be asleep.) The walking gives me some contractions but the others really haven't produced any. Carey has said that acupuncture is probably the best one to do, I just don't want to have to pay for it- even though I don't think it would be too much. I'm just so eager to see my baby. I want to know if it's a boy or girl (though I'm thinking it's a boy). I can hardly wait!

34 comments:

Genevieve said...

I keep checking for news!

Don't worry... the baby will come when s/he's ready. As far as I'm concerned, all the natural (and unnatural) induction techniques in the world won't bring on a birth if the kiddo isn't ready to come out.

Genevieve said...

Cara, I hope you don't mind me putting this here. I just wanted to have others who read you praying for you and Lena until you get a chance to update for yourself.

I received this email today...

Our daughter, Lena Rose, was born this morning at about 7:20. She weighed 9 lb 1 oz. Lena had a difficult delivery and the midwife did not make it on time so Matthew delivered Lena. Her breathing was very shallow and she had to be transferred to the Boone County Hospital to stabalize her and make her breathing stronger and then to Blank Children's Hospital in Des Moines for further tests. We are waiting for the results now. Lena is not processing her oxygen too well so she has been intubated and she is having some seizures - we're not sure yet what is causing them. I will try to keep you all informed of Lena's progress. Right now she has beautiful color and she looks like a healthy baby except for the tubes and the seizures. We love her dearly and ask your prayers, knowing that God is holding His dear child (and ours) in his hand.

Matthew, Cara, Eli, and Lena Rose

Genevieve said...

Another update from Matthew:

We got to the hospital this morning to a very happy nurse. She said Lena had a good night - no problems. She hasn't had any seizures since yesterday late morning or early afternoon (I can't remember). She's doing a lot of caughing and lung activity on her own so the nurse said the ventilator may come out completely by the end of the day, which is wonderful since having that ventilator in and not having her lungs working themselves increases the chance of infection.

They've been able to greatly decrease Lena's sedation (they had to sedate her heavily yesterday because she was very aggitated and they wanted her to rest to regain the strength in her lungs and let her brain recover - we couldn't talk at all in her room and we weren't even allowed to touch her). But this morning they told Cara she can lay her hands on Lena's head and on her little bottom, which I know made Cara happy.

She's a little red-head which is apparent in her feisty attitude. She's really a fighter and I thank God for His hand in the health of my darling little princess.

Matthew, Cara, Eli, and Lena Rose

Genevieve said...

Lena's team just did their rounds and I can tell you more about her progress. Soon after I wrote the first email this morning they took the ventilator out and she is breathing very well on her own - she's still under an oxygen hood and we're hoping that will come off tomorrow. It doesn't look like we'll be able to hold Lena yet today, but we are allowed a lot more contact with her. She got very fussy today when she was having her neurological assessment, but the nurses were pleased at how easy it was to calm her down again - a very good sign! Lena is being given more nutrients and hopefully by Friday she will receive some of Cara's milk through a feeding tube and we'll have to see her progress before we know when Cara can start breastfeeding. Hopefully it will be sometime early next week. Lena has to receive antibiotics for 7 days to make sure she doesn't get or have pnemonia so she will be here for at least 7 days, but the real gauge is when she starts nursing well - then she can go home.

I had a few inquiries about Cara's labor, and now that I'm not so worried about Lena I don't mind telling the story. Things were so quick - but I don't know if I'd call Cara's labor easy. Cara was in labor for 2 1/2 hours, but the first hour or so was very light. Then it hit her like a pile of bricks and Cara couldn't keep from pushing when the time came. Lena crowned really quickly and then her head was out without us even realizing it, but then the shoulders were stuck since she was so big. Once I got Cara out of the water and she had better traction the shoulders came out pretty easily and she had only a tiny tear likened to a paper cut - no need for stiches. Cara has recovered extremely quickly and has very minimal bleeding. She feels well. She's just working now with a breast pump so we can get some milk stored up to feed little Lena.

And for those of you who didn't read the email the day I sent it, just to confirm Lena's birthday is May 30th and she was born sometime between 7:20 and 7:25am.

I'll write more after we talk with the neurologist this afternoon and after we get any more test results - Lena will probably have a CT Scan tomorrow.

Thanks for all your prayers and for all of your kind emails. We have the most amazing support group between all of you and the people of Trinity Lutheran Church in Boone.

Matthew, Cara, Eli, and Lena Rose

Genevieve said...

Wednesday evening

We spoke with the neurologist today and she had a very positive outlook on the situation. She thinks the fact that Lena is bouncing back so quickly in every way is a great sign. She also took Lena off the phenobarbital she was receiving to prevent seizures. The hope is that now that she is stabalized we won't see anymore seizure activity and they were just a result of the initial trauma Lena experienced. They have been slowly weaning Lena of the Oxygen she is receiving through the big hood that covers half ehr body, but they decided to do it more slowly because she didn't react too well at one point today.

Lena Rose was washed in the blessed flood of Baptism at about 4:30 this afternoon. We rejoice in the salvation God has bestowed upon His precious child and we look forward to having a celebration of Lena's Baptism in church once she is out of the hospital.

Continue to keep my fiery little REDHEAD in your prayers as she recovers and looks forward to going home with her big brother who is already showing signs of being protective of her. I love my beautiful family!

Matthew, Cara, Eli, and Lena Rose

Genevieve said...

Keep praying for this little one...

Lena is back on the respirator as of 7:00 this morning. She's breathing okay, but the oxygen didn't look as good as they'd like in her blood draw. Her organs were getting enough oxygen, but that was about it. They think there may be a problem with one of the lobes in ehr right lung - that it may be clogged and they're hoping the respirator may help that.

The Cardiologist just came to speak with us as I was writing this email. Lena has Persistant Pulmonary Hypertension (Persistant meaning continuous from birth, Pulmonary dealing with the lungs, and then hypertension usually refers to high blood pressure, but in this case it refers to high lung pressure). This condition is common, but it will probably take 5-7 days for it to correct itself - there's not much they can do to correct it - just keep her on the respirator so that her body gets the oxygen it needs and allows her lungs to recover.

She still hasn't had aymore seizures. They just need to keep her calm - she does get aggitated pretty easily which is still a mental response to the her body not receiving enough oxygen during birth.

We'll be talking with the neonatologist later this afternoon and he will explain things more in full then, including the risks we face at this point. We still haven't gotten to hold her and it's really getting to Cara. We ask a few times a day, but they're still concerned about this arterial line in her belly button that is so sensitive. Our midwife said that we can persue it more with an advocate that the hospital has provided, but I just kind of want to see how things go today. I want to be cooperative with the medical team and I know they are very compitent, but I just can't help feeling that it would help Lena physically and mentally (including calming some of her aggitation) to have her Mama hold her. She's pretty heavily sedated again to keep her calm.

Again, thank you so much for all of your words of encouragement. I thanked our midwife yesterday for all the things they've done, bending over backwards to help us out and to fulfil our every need. She said that she knows the same would happen if the tables were turned and then she said something that really impacted me - something I had heard before, but it really clicked yesterday, "it takes a village." Cara and I feel like we've got a metropolis all caring for us. We thank you from the bottom of our hearts for your support. Lena will look back on this and know all the love that got her through this difficult beginning of ehr life. I'll write more later when we find out more.

Matthew, Cara, Eli, and Lena Rose

Genevieve said...

"Our Little Miracle"

That was the subject of the newest email from Matthew today. Praise God for His loving protection of the two women in that family...

So we all know that babies are little miracles and of course our little Lena is no exception to this rule and has already showed herself to be such a strong fighter and all, but today we found out just one more BIG reason to praise God that things are going as well as they are. I'll try to explain all of this in the simplest way I know how.

After all the business of Tuesday, our midwife decided to take a good look at Lena's placenta (the big kidney-shaped organ by which babies get nourishment from Mama in the womb - the placenta is attached to the inside of Mama's uterus and the umbilical cord runs from it to he baby's belly - becoming the baby's belly button after birth. Forgive my overexplaining, but I don't want to confuse those that don't know this stuff). Well, a normal placenta has the umbilical cord attached in the middle or slightly off center and the cord slightly resembles a tree with roots (blood vessels) firmly planted along the walls of the placenta to get oxygen and nutrients and to take to baby and bring back waste so the cord is made up of 2 arteries and 1 vein. This is not what Lena's placenta looked like and what she had was extremely rare and is being analyzed by a pathologist right now. When the midwife laid out the placenta it looked like it never had cord at all. Instead of the cord being attached securely in the center of the placenta it as very loosely attached on the side and all of those roots exposed - imply floating in a jelly. If even one of those blood vessels had been so much as nicked or even bent wrong Lena and Cara both would've died. We're so glad we never had an ultrasound because there's nothing that could've been done and we just would've lived the whole pregnancy in terror. The good thing is that even though Cara had this happen once, there is no risk of it happening in future pregnancies. As our midwife said, it would've been really easy for something to happen with this situation, but God wanted Lena and Cara alive. Thanks be to Him for taking such good cara of my girls.

Lena is going to need a small blood transfusion because of all the blood they've ahd to take out of her. It will help ensure good blood pressure, it will help with her O2 levels, and it will give her strength. The cool thing is that for anyone to donate blood to babies they have to go through a 2 year process of perfect blood tests before they can ever donate - I'm confident that Lena will do just fine.

Cara is recovering very well. She's had very little bleeding, as much or less than with Eli. An she got a little more colostrum (pre-milk) today so we're hoping she'll start getting a good reserve of milk in the next day or two so little Lena can start off on the nice healthy Mama's milk that is so important for her growth and development.

I'll write more later after we talk with the neonatologist.

Matthew, Cara, Eli, and Lena Rose


Also, they sent out an email about how you can reach them by phone (cell phone - please don't call their home as they're staying at the birth center near the hospital). If you need that phone number, please email Cara or Matthew - I don't feel comfortable publishing that number on the internet.

Genevieve said...

A better night for Lena

Lena had a rough day yesterday and Cara and I were under a lot of stress, but we're feeling much better today after a good night's rest, a good breakfast, and good news about Lena.

First, early yesterday evening Lena started running a temperature of 102ish and her heart was racing to 205bpm. They never could tell for sure what caused it, but they gave her more liquids and put cold compresses on her and got the temp down a little at a time and now both temp and heart rate are fine. She's resting well and they're still tweeking the ventelator a little here and there to get the optimum O2 in her blood. She's had two little transfusions now - one yesterday afternoon and one at 3:00 this morning and she's done well with those and is generally responding well to everything - a very good sign.

We know there are some great risks associated with all of her previous trauma, but right now is a time of hope - only time will tell what neurological problems she may have, but as our midwife said this little miracle was already not meant to be here and God thought otherwise - we know she is a fighter and we know she's determined to do well - she's a stubborn German and she's a redhead - what an aweful combination we're going to have to deal with down the road, but what a blessing now.

More good news - Cara was able to pump about half an oz of milk during the night and she's pumping again now - I can't wait to see how much she has this time. Her milk production is growing steadily with every session so we're very happy about that. So when Lena is ready to receive more than just the saline and electrolytes and such she'll get the best nourishment possible! :-)

Thank you again for all your prayers and your words of encouragement. We know that masses of people are praying for us throughout the Southwest and all over California, throughout Iowa and the Midwest, Florida and the East Coast, and even in other countries around the world. What a blessing to know that Lena is so loved. Our sincerest thanks!

Matthew, Cara, Eli, and Lena Rose

P.S. Cara tried to download pictures here in the hospital and it didn't work. This afternoon I'm planning on sending her back to the birth center for a few hours with her Mom and I'll stay here with my parents who are coming in sometime shortly after noon. Anyway, Cara will try to get some pictures downloaded and hopefully we'll be able to send some emailed out today or tomorrow. They're not the best because we've tried not to use the flash much. We want to keep Lena as calm as possible.

Genevieve said...
This comment has been removed by a blog administrator.
Genevieve said...

(Sorry - I meant to correct a type in the last deleted entry)

Still looking good

Lena's had a good day. Not much to report except that numbers are slowly starting to get better. We had a long meeting with the neonatologist today who explained more in detail the process that Lena is going through to clear up her PPHN (Persistant Pulminary Hypertension). If things go well and her oxygen levels continue to go up like they are then they will start weaning her within a few days from the ventilator until she is strong enough and her lungs are relaxed enough to pump the blood correctly on their own. So now it's just a waiting process.

I'm really tired so that's all I'll write for today. A very dear old friend pointed me in the direction of Psalm 91. I have read it a few times to Lena and I've been singing a few hymns to her everyday. She seems to like hearing my voice and I got some good gazing time with her this morning - she looked at me and at Cara for a little while before the fentanyl drug her back to sleep. We were thankful for some two-way interaction. We love our precious little girl.

Matthew, Cara, Eli, and Lena Rose

Genevieve said...

Lena had a really good evening yesterday - her O2 has been steadily going up with each blood gas test and is about halfway to where we want it to be. It looks like her PPHN will be gone sooner rather than later (closer to the 5 day mark than the 7-10 day mark). They've been slowly weaning her of her blood pressure medicine and they've been giving her less and less puffs of the ventilator, although that's hit a bit of a plateau because she was a little excitable this morning and they had to slightly increase her sedation. We just have to keep her calm. All in all things are continuing to look up.

Oh, and I was very excited that the nurse let me check Lena's temperature myself this morning. She said since she's got a catheter in I there aren't daipers for us to help change so this is at least one way we can be involved in her care.

Cara's getting over an ounce of milk on most sessions with the pump. I'm very proud of her.

I'll write more when there's more to write.

Matthew, Cara, Eli, and Lena Rose
Psalm 91

Genevieve said...

Two updates from today...

Lena's still stable

Lena Rose has been doing really well the last couple days. She hasn't had much change at all, but that is good - just keeping her calm as her body corrects itself. Last night Cara and I got to hold her up off of the table as they were changing her sheets/blankets. It was nice to have a little more contact with her and she was very calm as we held her there and talked to her. You can tell she's getting frustrated with the situation and doesn't like laying so still, but we have to keep her calm so everything fixes itself. They've had to up her sedation a little, but they thought they were going to have to do it sooner so they're glad they were able to put it off this long. Her blood oxygen has remained very consistent. This morning they were unable to draw her blood gases because of a clog in the catheter going into her belly button (you can rarely keep a catheter in an infant for a week or more), so the doctor came in a little bit ago to replace it and they were excited to get the new one in smoothly on the first try and Lena remained pretty relaxed during the proceedure. She'll be having an X-ray in a few minutes to make sure her tubes are in the right place and then they'll draw another blood gas to make sure things are still going well.

We said goodbye to Eli about an hour and a half ago. He went to Oklahoma with his Grammy Jan for a week and most of Cara's family will be coming back here next Sunday. We had a nice morning - we drove back to Boone for the first time (our midwife, Carey, came and sat with Lena for several hours) and went to church. It was nice to be back around a large part of our wonderful support group. And it was a nice feeling to be back in our home for a little bit and get to play with my Quincy Bird who missed me desperately. He's molting right now and he looks so ugly compared to normal, but he seemed very happy to see me and I was happy to see him. :-)

Well, thanks again for all your emails. If you ever want to get ahold of us (our cell phone is still acting up and we can't put minutes on it) you can call us at the hospital and if we're here they'll come let us know and patch the call through. The number for NICU here is [available by email]. Have a great day!

Matthew, Cara, Eli, and the Feisty Lena Rose


email 2

Good day

Lena had a PO2 level of 271 this evening - highest one yet! :-) Her last one was 261 so they are climbing slowly but surely. Cara broke down a little bit ago for the first time in a couple days. She hates the fact that our little girl can't be at home with us and that we can't hold her. She feels like this is going to last forever and she's so scared that something's going to go wrong. She forgets what it was like to carry her in the womb or even to give birth to her, and it doesn't feel like Lena is ours. I told her it will all come back to her the moment Cara get's to hold Lena in her arms, the moment she sits on our couch and nurses her and has that beautiful mother-daughter attachment in our own comfort zone. It just hurts to wait - but our waiting is not in vain.

I've been in pretty high spirits. I have my moments when I get a bit depressed due to exhaustion and those have been greatly intensified a couple times by my mother's negative attitude (I normally would never speak poorly of anyone, but I am REALLY frustrated). I don't know that I could survive a week in her extremely pessimistic shoes. I've decided that the only way for me to get through this whole ordeal is to think positively and to hold on to all the little joys - and we've had some pretty BIG joys as well. All my mom can focus on is that there's a chance that Lena could have major permanent brain damage - something we should be aware of, but something that we don't have enough information at this time to worry too much about. Lena needs us to be positive and God has already shown us that He can bring this little girl through the most difficult challenges. Now is a time for hope, and my hope is in the skilled hands of the doctors and nurses, in the capability of babies to bounce back, in Lena's own apparent determination, and most of all in the healing hand of God in whose loving arms Lena rests.

I take one day at a time and rejoice every time Lena has a good temperature, every time her PO2 goes up, every time she opens her eyes and focuses in on me, every time she takes a breath apart from the ventilator, every time her heart rate and her blood pressure remain constant, and so many other things. I thank God for my little girl (or rather my big girl) and I look forward to showering her with love every day of her life, until my numbered days come to an end. No matter what happens, she is my little Lena Rose, my little princess, and nothing can ever take that away from me.

Matthew

Genevieve said...

Two more:

Update 6/5 evening
Lena's been doing a good job of working the goop out of her lungs on her own the last few days. She just can't caugh with the ventilator in so they have to suction it out every couple hours. They brought the O2 weaning to a halt for the moment at 90% because her O2 level in her blood gas test was down a bit this evening. Her little body just needs some time to get used to it before they can start again hopefully in a few hours (they test her gases again at about 7:45), but this is about what we expected. It's a process with starts and stops and ups and downs - kinda like looking at a graph of a business's success. The line goes up and down a lot before it gets to the top, but it gets to the top. :-) And the nurse is actually very excited about how far they got before needing to wait.

Cara and I had a nice afternoon. We saw my parents off and then went out for pizza and some good relaxation. We're thinking about going to see a movie tomorrow afternoon. We have to shake the guilty feeling of leaving Lena because we're leaving her in good hands and we're staying close so if the phone does ring we can get back to the hospital quickly. We like to talk to her and touch her, but we try not to do that too much because we want her to stay calm so she can get all better. So we just do the best we can to pass the time. I'm preaching this coming Sunday (and the Thursday before) so preparing my sermon is giving me something to pass the time. Waiting is pretty annoying, but I know it's best for my beautiful princess.

Matthew, Cara, Eli, and The Roudy Redhead
Psalm 91

Cute baby
We just had som very good awake time with Miss Lena. She stayed pretty calm but was squeezing the lifeblood right out of Cara's finger. I sang her a few lullabies and she responded with a bunch of cute little poots. Cara says she gets it from me and once she gets the ventilator out she'll start burping like her Mama. We love our Gaseous Rose.

Genevieve said...

The Weaning Train

Come on ride the Train, and ride in. Ride the Weaning Train, and Ride in!

Lena had a good night and the weaning of her oxygen is back on again, but at 1% every two hours. I got some good awake time with her just a little bit ago until they knocked her back out, but she was looking at me all wide-eyed. We finally got the pictures on the computer, but we don't have our photo program with us so we need to figure out how to shrink them down to send them.

Happy One Week Birthday to Lena! Today was also Cara's due date. :-)

So these emails have been a lot like a journal to me (as I'm sure you could tell). Cara's been writing a lot of her thoughts down, but this is the way I find most helpful in recording these days. So here are a lot of my personal thoughts that you can read if you'd like, but I won't be offended if you don't:

I've had a lot of people write and say how strong we are and how strong and positive I am. I don't feel like I have a choice. I'm the father and the husband and it's my job to be strong and positive, and besides I don't do that well being weak. The few times I've allowed myself to be weak I've been completely miserable and that doesn't help anything. The first few days were so stressful and I did feel very relieved after a good cry each evening, but that was more of just a release of stress than anything. So the way I've found that helps me live day to day is to adopt a strange form of denial, not denying that this is all happening or the risks that we face, but ignoring them for the time being while we are in this horrible little waiting game. Anytime I give in to the worrying, I feel so physically drained and my stomach starts to hurt and I just start dwelling on all of the coulda/shoulda/wouldas all over again - all the things I could've done differently that might have improved the outcome. But then Cara said something very wise to me the other day - some of the things I say I would've changed may have been the very things that saved her life to begin with. As I've said before, we were stuck in a bad situation and we did the best we could with it. We don't regret having a homebirth and we would have another one in a heartbeat - just with some extra precautions including some of the things I would've changed about Lena's birth. We still firmly believe that home is the safest and most traditional place for birth to occur. And we know that what happened to Lena is a very rare case as far as midwives' statistics are concerned - this is the first time in 7 years our midwife has had to transfer a baby to Blank Children's Hospital. I'd like to see an O.B. beat those statistics. And part of what makes this even harder is that Eli's homebirth was an unusually perfect birth - 5 1/2 hour labor, perfectly pink baby with 10s on his APGARs (the newborn scoring system evaluating their initial health - 10 is the highest - Lena got 2 at 2 minutes and 7 at 10 minutes) he breathed immediately and nursed well with no complications, and we were able to have the whole day ahead of us to enjoy our new baby in the comfort of our home, surrounded eventually by so many of our loved ones who only added to the joy of that wonderful day. When you have such a perfect birth you tend to expect the next one to be the same or better - you don't expect something to go so wrong.

I am still so thankful for my perfect little girl, I just want to make all of her pain go away - Lena struggles so much - she wants to move and to get that stupid respirator out of her mouth and she wants to caugh up her own phlegm and she wants to be held and cuddled and she wants to suckle at her mother's breasts (she sucked Cara's finger a bit yesterday which is a very good thing - so often when babies have had so much stuff in their mouth they fear the good stuff in their mouth later so it takes time and patience to get them to nurse). And I hate seeing Cara struggle. I can hardly wait until this is all behind us and Cara and Lena can make up the bonding time they've lost. And I don't worry about that - they will regain that bond that is hanging on by a thread right now. I just hate that I can't make it sooner for my beautiful ladies.

So if you've made it this far I commend you for your determination and for the friendship with which you all have showered us. It means a lot to me to feel comfortable enough spilling the thoughts of my heart to you all. Continue to pray for us that we remain strong in our hope and in our faith and weak in the loving arms of our Lord and Savior who alone is the Great Physician who watches over and heals Lena and our whole family and everyone of His faithful children.

In Him we are your Servants,

Matthew, Cara, Eli, and Lena Rose

Genevieve said...

The weaning train is stalled

Lena's weaning is stalled at 86% oxygen. They're giving her some sodium bicarbonate to help balance her pH and bring her oxygen up and her carbon dioxide down so we can get the train going again. Her next blood gas test is in 2 hours.

We had a nurse who is a patient advocate come and speak with us for quite a while. She's a very nice lady and very supportive. We talked about some long term monitoring of Lena's progress over the next several months and years to see how she develops and what, if anything, we will need to do to improve her development. She said the team is pretty confident that her brain swelling was minimal - we are very thankful for that. They expect her to be off the ventilator and to have the PPHN controlled by the end of the week and have her receiving milk through a tube and then quickly start the nursing process. She told us what we already knew, that it could take time to get the nursing going solidly and we want to do all we can to build on Lena's strengths. If nursing takes a lot of time to establish we may be here through a good part of June, so that's what I will keep in mind for now - we'll hope for sooner, but even if it isn't sooner we'll get to enjoy the next couple weeks much more than this week since we'll be able to hold Lena and have much more contact with her.

In Christ we are your Servants,

Matthew, Cara, Eli, and Lena Rose

Genevieve said...

A Boone-style train

Living in Boone, Iowa, the last several months we've gotten to know trains very well. The weaning train is moving about as slow as one of those trains that comes when you're almost late for something important. But at least it is going! Lena's going down 1% every few hours - basically every time they draw her blood gases and see that they are okay.

Cara and I went with our friend Jess to a movie tonight - the nurses cheered! They want us to take a break and enjoy ourselves - especially since Lena is stable. We saw "Over the Hedge" and enjoyed it very much - although I did get a little sad when the animals were going to be exterminated for obvious reasons. But it was a good relaxing evening. Jess works at Living History Farms here in Des Moines and is going to take us there tomorrow since it is her day off. It took some convincing to get Cara to go, but once again we will be close if we should get a call and it will help this awful time pass more quickly and give us something to relax us and take our minds off of this hospital. Cara said this evening that she's beginning to feel like we don't have any kids. I shared her sentiments when I was walking to the bathroom at the mall and passed the family restroom and the nursing room - oh how I long to be in there with my family. Those of you with small children know what a relief those rooms are and you share my gratefulness to the person who first thought of making such an ingenious room.

Lena lifts her head very well for a 1 weeks old. Too bad we're not wanting her to lift her head right now, but once the ventilator is out it's a good sign developmentally - it actually puts her ahead of her time in one sense that they would check for at 4 months. We'll hope she continues soring. They also have to keep little socks on her hands to keep her from grabbing hold of her tubes (grabbing is another good developmental sign) and ripping them out. So we'll pray for good sleeping now and for these things to continue in a few days AFTER the tube comes OUT. :-)

God bless my little Feisty-Roudy-Stubborn-German-Redheaded-Princess!

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose

Genevieve said...

I have fallen behind with updates with some home busy-ness. I'll see how much I can get in one comment and put the rest in another if I have to!

Two trains moving today

Lena's oxygen is set at 80% right now and they've dropped her dopamine down from .6 to .5 today. So after you saw Lena's pictures I'm sure you can see why we joke around that Cara gave birth to a 3-month-old. And yet Cara bled and tore less with Lena than with her brother who was exactly 2 pounds smaller and 2 weeks earlier.

We had a nice day with our friend, Jess, at Living History Farms, but Cara can hardly wait until we can go again with Eli (and Lena, although she wouldn't enjoy it as much as Eli). We're pretty exhausted now, though.

Well, my brain is exhausted as well so that's all I'll write for now.

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
Psalm 91

Lena update: June 8th morning

Lena had another good night. Her oxygen was just dropped to %74 and last night they dropped her dopamine again to .4. It's getting harder and harder to keep her still because she just wants to do so much. Before we left last night we had some good awake time with her. She sucked on my finger for quite a while and got very upset when I took it away. Then she started gagging on her ventilator tube and showed us exactly what she thought about all of this stuff that is being done to her. But we were able to get her quiet again and they didn't have to sedate her again until later at night and then again this morning when she got a very persistent case of the hiccups.

We're going back to Boone this afternoon. I'm preaching tonight and as long as Lena continues to do well during the day and this evening we're planning on staying in our own home tonight and come back down to Des Moines tomorrow morning. It'll be nice to be in our own home, but it will be strange to be there without our children.

Have a great day!

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
Psalm 91

Train picking up speed

We just found out that the weaning train is back to reducing her oxygen by 1% every hour! Yeah! Lena Rose is at 71% now and since her blood gases have been consistently good they're back to checking them every 6 hours instead of every 3 hours. They're taking her off of her Fentanyl (sedative and pain reliever) drip today and putting her on another kind of sedative that isn't as strong but stays in her system longer and is more flexible in the way they can administer it so if she needs it after she gets the ventilator out and the arterial line out they can give it to her orally or by other forms. I can't remember right now what it is called. It started with an "M" (I know that really helps you a lot :-)). If Lena continues having her O2 reduced by 1% per hour then early tomorrow morning they will put the O2 reduction to a halt for a while and reduce her Nitric Oxide (the stuff she's getting with her oxygen to relax her lungs) some and then it'll be a tennis match back and forth between the two until she is off the ventilator.

We're in good spirits after hearing that Lena is still progressing so nicely and we feel more comfortable about going home tonight. Thank you again for all of your prayers and your love and concern. I have been saving all of the emails you have sent with your well-wishes and kind words and I will eventually organize them into a scrap book along with my email updates and other stuff we have regarding Lena's early days. So far we have gotten 111 emails! I eagerly await your emails everyday and we have both very much enjoyed reading them. We know we are so blessed with the universal support group we have.

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose

Update: June 8th Night

Lena's still doing really well. The nurse called us here at home at 9:30 and told is that Lena was awake for 3 hours - but she was good and layed nice and still - she's more obedient than her brother - he would've been to the other end of the hospital by now :-). Lena is down to 65% oxygen and going strong.

I'm so proud of my little girl - she's so determined to get better and even more determined to get going so she can make our lives miserable as a rotten toddler. I looked at some pictures of Eli tonight and it really hit me what beautiful children we have - I don't feel too conceited saying that because God had more say in that decision to make them adorable than I did. I have always enjoyed having people come up to me and tell me how cute Eli is and now the fact that the nurses feel gipped when they don't get a shift with Lena makes me feel even more excited about my wonderful kids. I feel like the luckiest father and husband in the world - and I am! (Sorry to all the other fathers who have the incorrect impression that I am wrong). Did I ever tell you that I felt sorry for other parents when Eli was a baby - I felt bad that their babies weren't as cute as mine - but then I'm sure they felt the same way :-).

Matthew - the very unapologically proud Papa!

Genevieve said...

The train has gone back to the depot

Lena didn't have the best night or morning. She had 3 blood gases in a row that weren't too great so they took her oxygen up from 60% to 70% and then eventually got her back on 100%. Since then her blood gases are good again and they're doing another echocardiogram to see what's going on. She has another blood gas test at 5:00pm (in 2 hours) and we'll hope her numbers have gone back up a lot.

So obviously Cara and I are really frustrated. We expected to backslide or hit some bumps at some point, but this was much bigger than we thought it would be. This is another one of those ulcer days.

Hopefully my next update will be much better!

Resting in His Care,
Matthew, Cara, Eli, and Lena Rose
Psalm 91


Please continue to keep little Lean (and her family) in your prayers.

Genevieve said...

3 short Lena emails from this evening:

Train about to start again

Lena responded so well to them upping her oxygen back to 100% that her last came back at 459 - the highest one, yet, by far!!! The nurse is going to report this to her doctors and we'll see how quickly we can start the weaning again. They haven't gotten the results back on the echo but that should be really soon. Lena was so bright eyed and happy to see us when we got here. We just can't wait to hold her and squeeze her to pieces!

One thing that they're taking care of at the moment, but the nurse says it isn't a concern and it will correct itself immediatly when they get her off the sedatives, is that he bowels aren't working as well as before so now her bile is backing up and she's vomiting barfing it out - so they've got a tube into her tummy to get the most of it before she throws it up. But like I said, the nurse said they're not worried about it.

So it was nice to get here to some better news than this afternoon. We love out little girl and can't wait until all of this uncertainty is over. And I love being able to send good emails out because I know you are rooting for Lena right along with us and we want you to be excited and relieved with each step in the right direction.

Matthew, Cara, Eli, and Lena Rose
Psalm 91


Cosby quote

I just finished reading Bill Cosby's Fatherhood and I found a quote in it that perfectly described my future problems with my feisty little redhead:

"You start to get angry, but you cannot sustain it, for how can you be angry at a child who is so pretty and biteable? Sustaining anger at a biteable daughter has been a father's timeless problem. I doubt it can ever be solved."

And boy is Lena biteable with all her rollies and her chubby cheeks - I could just eat her up if they'd just let me hold her :-).

Her echo came back that the PPHN hasn't cleared up as quickly as they've wanted, but it is less than last week. And they're going to take the catheter out of her bellybutton probably tomorrow morning and put one in her arm which has more benefits at this stage in the game. But her arterial line is still staying in her bellybutton so we still can't hold her - urgh!

Well, we'll keep hoping that things get better without backslides. We know it's just a matter of time.

Matthew, Cara, Eli, and Lena Rose
Psalm 91


2 other trains moving

Lena's blood pressure has been REALLY good so they've got her dopamine down to .3 and are probably going to take it down even more tonight. They're also weaning her ventilator by Puffs per minute, but not starting the weaning of oxygen percentage yet. She's had a really good evening - we're very thankful.

Matthew, Cara, Eli, and Lena Rose
Psalm 91

Genevieve said...

Three updates on Lena...

Good day for Lena (last night)

Lena had a really good night last night and a good day today - her biggest problems were that she is far too feisty (but then that's nothing new) so they keep having to up her sedative - but they did wean her from her fentanyl and switched her to methadone which has less side affects - that's the one I wrote about yesterday. With the last of her fentanyl she started having problems with her bowels, but those are clearing up now with the fentanyl being gone. Her numbers have been good and they're just waiting a little while longer to start weaning her O2 again.

They also tried to put a catheter into her arm today with no success, but they'll try again tomorrow in another arm. This new catheter has many benefits - just so long as they can get it in without too many problems.

So Cara and I are really seeing God's hand in this whole thing a LOT! There are so many things to be thankful for like the fact that we rejoice so much in the tiny little positives each day, and the fact that we had gotten into a rut where we were arguing a little too much getting frustrated with each other in the late stage of Cara's pregnancy and now we are on this strange honeymoon again - we're been giddy with each other and we hold hands and we are showing our love to each other constantly. We are realizing how much it means to both of us to have one another's shoulder to lean on and the joy in knowing that there is nobody else we would want to share this difficult time with because nobody else would support us in the way that we support each other. This is a very good time for our marriage and it has taught us a lot about how blessed we are with the beautiful family God has given us.

A friend just asked me to explain Lena's name. Lena Rose was named after two very special people. One of my mother's middle names is Lina (but Cara and I both prefer it with an E and we figure it helps with the correct pronunciation "Lee-nah" or even "Lay-nah" as opposed to "LI-nah") and Rose is Cara's middle name. Not on purpose we found that we have a pattern in the family names - Cara, Eli, and Lena are CRJ, ERJ, and LRJ. If Lena would've been a boy she would've been Martin Nikolai, Martin for Lena's Godfather, Matthew Martin Frick and Nikolai mostly because we like it but also because of our love and respect for Phillip Nicolai, a 16th-17th century hymnwriter and pastor. We will save Martin for our next son because we want very much to name a child after Matthew, but even though we still love the middle name Nikolai we are flexible - Eli was going to be Lillian Claire if he was a girl and we didn't stick with that even though we loved that name and still do. But we look at our beautiful daughter and think she fits her name very well - especially since she's a redhead named rose - I definetly believe God has a sense of humor since we had that name picked before we knew the color of her hair.

Matthew, Cara. Eli, and Lena Rose
Psalm 91


Come on Ride the Train... :)

Just a quick note as I'm getting ready for church -

I was so excited when the nurse told me that Dr. Bzdega gave the order to start dropping Lena's O2 by one percent per hour that I completely forgot to ask what it is at now - but this was after her 5:00am gas coming back over 400 again so it could down to 99% or 98%. And Lena had a good night otherwise.

Rejoicing in God's Timing,
Matthew, Cara, Eli, and Lena Rose
Psalm 91


Full Steam Ahead!

Lena is down to 91% oxygen now - her last two blood gases since they've started weaning her have been good and she's been a pretty good girl this afternoon. She's awake at the moment and it kills me to be in here writing instead of spending time with her, but I don't want to get her riled up.

I guess they're going wait a couple days before trying to put another pic line in (the catheter in Lena's arm, leg, or possible scalp).

We had a nice evening and a great day in Boone. We got in at a descent time last night and I talked with some friends online and slept very well and we really enjoyed being around our core support group at Trinity this morning. And I was so happy to have good news to report. After church some friends took us out to lunch and then we cleaned up the house and slowly got ready and left to come back here. We had a nice drive and reminisced a lot about when we were dating and when we first became friends and just had a wonderful time recalling the story of us. It's so nice to know that I married my best friend in the whole world.

Cara's family is on the road up now from Oklahoma. It'll be so nice to see Eli tomorrow - we miss him so much!

I thank God for such a good day and good last couple of days and hope they continue this way.

In Him we are your Servants,
Matthew, Cara, Eli, and Lena Rose
Psalm 91

Genevieve said...

I missed one in there! From June 10th @ 11:51 AM -
Feisty Girl

Lena's had an uneventful night - numbers are good, everything is remaining consistent. This morning when I talked with the nurse she said they were probably going to have to sedate her again - she's all wide-eyed and bushy tailed and they share my love of seeing her so alive and cute, but they also share my frustration that she needs to SLEEP! The nurse was trying to keep her on her side or tummy to help that lobe in her lung clear out and when she'd put her on her side Lena would roll onto her back and when she puts her on her tummy Lena decides she's going to crawl away - I guess Lena thinks this is all one big game. These nurses are usually dealing with tiny little preemies who don't talk back. At least we know she's got spunk :-).

Matthew, Cara, Eli, and Spunky Rose
Psalm 91

Genevieve said...

Train taking a rest
(6/12 afternoon)

Lena had another great night and a great morning. Her numbers have been consistently good and they just took her urine catheter out since she can pee on her own now since she's off the Fentanyl. She's had a couple poopies, too - oh the things a father gets excited about!

They did decided to stop the O2 weaning until tomorrow (Tuesday) just because she is doing so well and they want to give her a rest so it all stays that way. Her lungs are still clearing up well with a little therapy each day (some gentle pounding on her chest that she doesn't mind too much once she gets used to it) and when she does get messed with the relaxes really well once they leave her alone so they haven't had to up her methadone (sedative) anymore in the last day or so. Tomorrow she's going to have another echocardiogram to make sure her PPHN is clearing up and then they'll start weaning the O2 again. They're also going to have a second try at the pic line (replacing the belly button catheter) in her other arm today - if they can't get it in her arms or legs they'll put one in one of the big veins that run accross the top of her head - this is non-invasive into her head, just on the surface, but the reason they don't do that first is parents don't want to see their little babies with parts of their hair shaved off. I figure she's a little girl and we can put her in hats until her hair grows back in. :-)

Cara's family is on their way here now from Lenox, Iowa. I can hardly wait to see Eli. Since Cara can't nurse Lena for a few more days we're planning on spending a lot more time in Boone this week - Cara with her family and me back to work after the church has been so generous in letting me down her so long. Once Cara starts nursing she'll have to be up her most of the time with Lena, but that'll be okay because we'll get to actually spend quality time with her and hold her and love on her. By the way, Cara has expressed so much breast milk that they had to start moving her milk to a second freezer! This morning she got about 3 1/2 ounces in one sitting. She's been so faithful at pumping and ensuring Lena has the best chance at nursing easily and getting the best nutrition possible to make Lena better and give her the good start that she didn't have right off the bat. Cara's sister recommended (and I fully agree) that after Lena gets out of the hospital the two of them need to take a "babymoon" - a honeymoon with her baby. They just need to lay in bed for hours and hours and sleep and nurse and stare at each other and just start all over again and build up their relationship. I can hardly wait for them to be able to do that. :-)

God's Blessings!
Matthew, Cara, Eli, and Lena Rose
Psalm 91

Not much to report
(6/13 afternoon)

Lena's had another good last 24 hours or so. She's still at 80% oxygen and has had pretty good blood gases - the last one was a little lower than the others, but still not bad. They got the pic line in with no problem and they have another peripheral line in her head to add in one of her medications that can't go in the line with the other stuff(they had to shave a little bit of her hair, but I'm okay with that and it seems that Cara is, too - it's just a tiny bit close to the front). The nurse hasn't gotten the echo results back yet so we don't know yet how much better her PPHN is.

It's been a lot of fun having Cara's family here. Since I was never blessed with siblings (my brother is 14 years older than me and my nephew didn't come to live with us until I was about 14) I find myself so drawn to my brothers and sisters-in-law. We're been having a good time. And of course I was thrilled to have Eli back - the first thing he did was throw himself into my arms and lay his head on my shoulder and snuggle with me for a long time. He's been coming to me a ton and putting his arms up to pick me up and then he snuggles with me again. We've realized lately how much he loves to go to men and you don't necessarily find that a lot with little children, but Eli loves our next door neighbor Bill and throws himself at him and he loves a lot of the men at the church - their wives will be holding Eli and Eli will want to go to the husbands who never have kids want them. So I've really noticed now that he's back that he's really wanted me a lot and I think it's because he's so scared that I'm going to go away again.

I've got two really cute pictures of Lena with her eyes open - I love her eyes so much - especially with her chubby cheeks. I'll send them once we get them downloaded. I really don't think that the pictures I sent before do her justice - especially the ones where she is asleep because I think they make her look more sick than she really looks - she just looks so alive and spunky. I think these ones with her eyes open look more like my little Lena Rose.

Well, I'll write more later - sorry I only wrote once yesterday - just too busy. But I'll try to write once we know the results of her echo.

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
Psalm 91

Past Updates
(6/13 afternoon - 2)

Especially for those of you who have been added to this email list recently, if you'd like to read ALL of Lena's updates from day one, a very dear friend of ours has been posting them as comments on Cara's blog: http://wifeandmama.blogspot.com/ under the post entitled "Still Pregnant" and feel free to share these with anyone who is interesting in following Lena's story and praying for her during this trying time - you are also welcome to share this email address with others who would like the be put on Lena's Update List. Thank you again for all of your support.

A passage from 2nd Peter 3 has been sitting on my heart the last few days and I'm going to replace Psalm 91 with it in our signature because I believe it is exactly what we need to be remembering in this time of waiting. I am thankful for the Word of God which gives me such great comfort during this and all times.

In Him we are your Servants,
Matthew, Cara, Eli, and Lena Rose
But do not overlook this one fact, beloved, that with the Lord one day is as a thousand years, and a thousand years as one day. The Lord is not slow to fulfill his promise as some count slowness, but is patient toward you, not wishing that any should perish, but that all should reach repentance. - 2 Peter 3:8-9

Genevieve said...

This train makes frequent stops (June 14)

The weaning train is back on again after a really good gas this morning (340s) but if I heard the nurse correctly they're going to do 1% per hour and stop after 5% to make sure Lena is tolerating it well. When I talked to the nurse this morning they still hadn't gotten the results of the echocardiogram. Urgh! But Lena had another good day yesterday and a good night and morning today so we are thankful for that.

Yesterday Cara and I got to talking about how wearing this is getting on us. It just really seems to be dragging on forever. The neonatologist seemed so confident that the PPHN would clear up within 5-7 days - up to 10 if she developed an infection. Well she hasn't had an infection and it's been about 12 days since he's talked to us. It just feels like this is never going to end. I'm finding myself, not with the awful knots in my stomach like I've had when Lena has had a bad day, but feeling drained all over and a little bid depressed - don't worry about me because I'm saying that, I just need to focus a little more each day on the positives and every little pick-me-up helps. We're just both so ready for this whole thing to be over and we don't yet have the end in sight - we're just glad that at the moment we're not going backwards and even though the going forward seems really slow, at least it's the right direction. And we love out little big girl so much!

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
But do not overlook this one fact, beloved, that with the Lord one day is as a thousand years, and a thousand years as one day. The Lord is not slow to fulfil His promise as some count slowness, but is patient toward you, not wishing that any should perish, but that all should reach repentance. - 2 Peter 3:8-9


A very promising train (June 14)

We spoke with Lena's doctor this afternoon and she had a very positive attitude about Lena's progress and where she thinks Lena will be in the next few days. Lena's echocardiogram showed that there is a lot of improvement - not yet where we want it, but definitely in the right direction. She's planning another echo on Friday and hoping that by then we will be down to the 60% O2 and weaning the nitric oxide. She said it is possible and hopeful that we will be down to 60% sometime tomorrow and that the weaning of the nitric will go pretty quickly at first (she's receiving 20 parts per million and that is a pretty high number - babies don't usually have any trouble weaning until it drops below 10% so they will start weaning much slower after they get down under 10% to avoid back-sliding).

Lena has had a very good day today (aside from a descent amount of grouchiness that didn't seem to highly effect her gases) and this last evaluation/work up that the nurse just did was the best she has done in 2 days - Lena remained very calm, didn't get agitated, numbers stayed constant, and Cara even got to change her poopy diaper - 1ST ONE CARA'S GOTTEN TO CHANGE!!! This is a very good thing because her next blood gas is in 1/2 an hour so the fact that she was so calm will positively affect the results.

So we're not getting our hopes up for things to move too quickly - we know how sensitive Lena is at the moment and how easily things could reverse themselves if she reacts poorly to anything that's being done. But it's nice to see that things are moving and I'm feeling mostly back to my old positive self. :-)

If you are ever confused about any of the stuff I write or just want me to better explain something, please let me know. Parents who go through this sort of thing gain much more medical knowledge than they ever wanted to have and I'm happy to try to answer any questions I haven't answered in these emails. I try to explain things as best as I can based on how they're explained to me, but I know that sometimes I don't explain them as well as I understand them in my own mind - mea culpa, mea culpa, mea maxima culpa.

Glad I have somewhat uplifting news for you this evening :-)

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
But do not overlook this one fact, beloved, that with the Lord one day is as a thousand years, and a thousand years as one day. The Lord is not slow to fulfil His promise as some count slowness, but is patient toward you, not wishing that any should perish, but that all should reach repentance. - 2 Peter 3:8-9


The dinner train is moving! (June 15)

This morning at about 11:00 Lena received her first serving of breast milk through a tube in her nose!!! She gagged for a while, but she never threw it up and hasn't had any problems with it during the day! We're so happy about this. They'll feed her only once or twice a day for the next couple days until she gets more used to it.

Her only negative thing (and this is so minor) is that the IV in Lena's head burst the blood vessel (they're pretty sensitive vessels and it doesn't do any real damage - just takes a little bit of time to heal back up - just like if we scratch ourselves or something) so they tried to get the IV in 6 more times before giving up - poor thing has a swollen spot in her head and looks like she's got the mange with two patches of hair missing :-) - oh well, she's still SO beautiful. The methadone they give through that tube cannot be given in the same tube as the dopamine, but it can be given orally so they gave it through her feeding tube.

Lena's dopamine (bringing her blood pressure up) is down now to .2 (it's been at .3 for a while) - once they get her off of that she can receive the methadone through the tube in her arm. She is having another blood transfusion today - now remember that we don't fear these blood transfusions because the blood comes from donors who have been tested for 2 years before they are ever allowed to donate and then they have been giving her these transfusions from the same bag and we know that she already does well with this blood. Along with generally being good for her to get more blood they are hoping it will stabilize her heart rate which has been a little high - not too bad, but it could stand to be brought down.

The weaning train is at 66% oxygen - remember that when we get to 60% which could be today if things continue to go well they will start weaning the nitric.

So I'm glad to give you a bunch of good news - her doctor and nurse were so excited to give it all to us - it's like they couldn't get to us fast enough when we arrived today. Thanks be to God for giving us such peace at the moment.
In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
But do not overlook this one fact, beloved, that with the Lord one day is as a thousand years, and a thousand years as one day.
The Lord is not slow to fulfil His promise as some count slowness, but is patient toward you, not wishing that any should perish, but that all should reach repentance. - 2 Peter 3:8-9


1 train to destination (June 15)

Lena is off of her dopamine!!!!! :-) She's at 62% Oxygen and will continue to wean to 60% and they'll hold it there at least until her 11:00pm blood gas - if that's REALLY good they may start weaning the nitric then, but they're leaning toward waiting until her 5:00am blood gas before weaning the nitric - since today has been such an AWESOME day they don't want to push her too hard and make her have to go backwards - Cara and I whole-heartedly agree.

I forgot to write in an earlier email that Eli had a very good long visit with Lena today. He is so gentle when he touches her and then he got to watch as the nurse did her exam and as the respiratory therapist pounded on her chest - he was very interested in everything that was going on. Lena was very grouchy when this stuff was being done so the nurse and therapist were happy to let him touch her a lot while they were working - he couldn't upset her anymore than she already was :-).

Thanks be to God for such an uplifting day!
In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
But do not overlook this one fact, beloved, that with the Lord one day is as a thousand years, and a thousand years as one day.
The Lord is not slow to fulfil His promise as some count slowness, but is patient toward you, not wishing that any should perish, but that all should reach repentance. - 2 Peter 3:8-9


A new train has left the station (June 16)

Lena had a good night - although she did get pretty wild so they gave her some extra sedation. After a great gas this morning they weaned her to 58% oxygen and then weaned 5 ppm of her nitric oxide. I just talked to the nurse again and her 11am blood gas PO2 was 76 (pretty low) so they brought her back up to 60% and they're going to do another gas at 1:00 this afternoon. The nurse didn't seem too worried about it and I know there's no need to worry about 1 bad gas - just when there are several bad ones in a row. The nurse said she's sure her 1:00 one will be much better. They're keeping her nitric oxide at 15ppm right now.

Lena continues to do well with her feedings - she's up to 2 tsp every 3 hours. So we're hoping for another good day like yesterday.

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
But do not overlook this one fact, beloved, that with the Lord one day is as a thousand years, and a thousand years as one day.
The Lord is not slow to fulfil His promise as some count slowness, but is patient toward you, not wishing that any should perish, but that all should reach repentance. - 2 Peter 3:8-9


Happy train resting for the moment (June 16)


This has been another really good day for Lena. Both of her afternoon gases have been really good - 201 and 244 (for being down to 60% oxygen those are great numbers - remember, we breath 21% oxygen and our numbers would be in the 70s-80s I believe - so while we wanted Lena in the 300s-400s while her oxygen level was in the 90s, 200s are really good for her being at 60%). Lena's nitric oxide is down to 10 parts per million and they'll probably wait to wean that anymore until tomorrow. When I talked to the nurse a little bit ago the doctors were working on a high priority arrival and Lena is low priority at the moment because she's doing so well - and as far as we're concerned after so much weaning a little rest is good to keep her strong.

Thanks be to God for another great day - but thanks be to God for the bad days, too, because we deserve neither and are blessed beyond all comprehension with the life He has allowed us and with which He has gifted us. I am eternally grateful for the faith He has given that has seen us through all of this.

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
But do not overlook this one fact, beloved, that with the Lord one day is as a thousand years, and a thousand years as one day.
The Lord is not slow to fulfil His promise as some count slowness, but is patient toward you, not wishing that any should perish, but that all should reach repentance. - 2 Peter 3:8-9


Train moves backwards a bit (June 17)

Lena's numbers weren't bad this morning, but they weren't as high as we would like them so they're going to move her back to 15ppm of the nitric oxide. This is one of those little steps backward that we had anticipated so we're not too disappointed, but we do look forward to the weaning train going back in the right direction again.

We're going to go to the Zoo today - the nurses agree that we need it as a distraction. And Eli will love seeing all the animals (and so will his Papa who is still a little kid when it comes to things like Zoos :-)) And the Zoo is pretty close to the hospital. Pray that Lena has another good day like the last couple days.

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
But do not overlook this one fact, beloved, that with the Lord one day is as a thousand years, and a thousand years as one day.
The Lord is not slow to fulfil His promise as some count slowness, but is patient toward you, not wishing that any should perish, but that all should reach repentance. - 2 Peter 3:8-9


Another little step back (June 17)

We got here just as the doctors were doing their rounds. They decided to pull Lena's O2 back up to 70%, not because she is doing any worse since my last email, but 2 weeks ago she had that big back slide and they figured rather than waiting these low numbers out they would go back a little to ensure they don't have a big backslide - so we're very thankful for their care in the matter and they will move even slower when they start weaning again (they're hoping within the day) they will move very slowly.

The nurse just got the results of her 11am blood gas and they were wonderful - oxygen was 305 and O2 was 44 - both great numbers and great pH. They probably won't do any weaning again until getting good results at her 5pm gas. They're doing an echo at the moment, hoping that it will show a lot of improvement.

So we're just trying to focus on the positive and know that this is just a little step back, mostly as a precaution. We're off to the Zoo now :-).

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
But do not overlook this one fact, beloved, that with the Lord one day is as a thousand years, and a thousand years as one day.
The Lord is not slow to fulfil His promise as some count slowness, but is patient toward you, not wishing that any should perish, but that all should reach repentance. - 2 Peter 3:8-9


Slowly weaning (June 17)

Since Lena's 11:00 blood gas was so good Dr. Harrell decided to very slowly wean her back down to 65% over a few hours and hold her there for a bit - she's at 68% now. Just a quick update. :-)

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
But do not overlook this one fact, beloved, that with the Lord one day is as a thousand years, and a thousand years as one day.
The Lord is not slow to fulfil His promise as some count slowness, but is patient toward you, not wishing that any should perish, but that all should reach repentance. - 2 Peter 3:8-9


An overview of Lena’s condition (June 17)


I had a very close friend ask me some questions about Lena's condition that need better explanations, so I'm going to answer them for you all and if any of you are still confused, just ask. I have actually had several people ask me some of the same questions and I know this is all a lot to swallow and I'm sure I don't do the topic justice. :-)

Question:
What exactly is wrong with her and what caused it?
When Lena was born she was a very big baby and once her head was born her shoulders got stuck. She was stuck for several minutes - possibly as long as 10 minutes. Being stuck that long her umbilical cord stopped pulsating, getting oxygen to her body, and if she was breathing before being completely born it was very shallow. When Lena was born her head and legs were purple-blue and her body was white. This kind of trauma can cause a baby's body to revert back to the way it worked in the womb. The passage that pumps blood to and from the umbilical cord usually shuts when the baby is born with all of the contractions and squishing through the birth canal. Lena's didn't so they had to ensure that her blood wasn't going where it wasn't supposed to so the dopamine (blood pressure medication) she was on was ensuring that the area her heart was trying to pump blood to had a higher pressure so her body was pumping to the right places. Now she is off of the dopamine and doing well with that.

What is all this gas stuff for? We breath 21% oxygen in the air and when we do so our lungs process this air and send the oxygen out into our body to do its work. If our blood were tested (after receiving 21% O2) our O2 would measure in the 70s or 80s (I'm not certain of those numbers - but then I'm not concerned about what my blood is supposed to measure, but what Lena's blood is supposed to measure). Ours would stay very consistent, maybe wavering a little. When a baby is on 100% oxygen that number should be in the 500s. As long as that number doesn't go below 40 there is no worry of damage to the major organs. Lena's numbers go up and down, and will until she completely stabilizes and so when they get gases that are in the double digits it is possible that they could dip down below 40. Lena's numbers have not gone below 40 since she's had this care. As this PPHN (which I will explain more in a minute) gets better, Lena's body is better able to keep that oxygen number in her blood up above 100 or 200 as the ventilator settings are reduced to bring her closer to normal room air. They draw blood for these gas tests from the catheter in her bellybutton and that is a very sensitive spot that we don't want to disturb. As long as it's in they don't want us holding Lena. Once her gases are very stable and probably about the time they think she's ready to come off the ventilator completely they will take the catheter out.

Is it just basically that her lungs didn't develop right and they need extra oxygen until they can heal?
Lena's lungs developed just fine - she was right where she should've been at 39 weeks gestation. It's simply the birth trauma that caused her body to go backwards. The condition she has is called Persistent Pulmonary Hypertension (PPHN) which means that her lungs are working too hard - they are constricting too much and not allowing all the oxygen through. So we want to get her lungs to relax and start working the way they're supposed to work so that all the oxygen in the 21% oxygen-filled air she breaths is going to her body. There are several things Lena's medical team is doing to ensure that her lungs recover the way they are supposed to. There's not anything the doctors can do to make Lena's lungs heal, they just have to do things that will ensure that her body will heal itself. These things are having her on the ventilator so that her Lungs don't have to work and can rest and recover, giving her the dopamine which has already served its purpose, giving her nitric oxide through her ventilator which relaxes Lena's lungs, keeping her calm so that her body can relax through the use of sedatives like methadone, pentobarbital, versed, fentanyl, and generally taking away distractions that would cause her body to change focus - that's why they waited so long to feed her - they were just giving her fats and carbs and stuff straight into her blood, but she has now done very well with the introduction of milk directly into her tummy.

My dad sent me some websites on PPHN that I haven't gotten around to checking out yet, but he says they give some good information. This is not an uncommon thing in babies with difficult births.

www.PPH-Newborn.org

http://kidshealth.org/parent/medical/heart/pphn.html <- I think this one offers the best quick overview.

http://www.cs.nsw.gov.au/rpa/neonatal/html/newprot/pphn.htm

http://www.hmc.psu.edu/childrens/healthinfo/pq/pphn.htm


So, I hope that clears up any confusion, and if it doesn't then I'm happy to explain further. :-)

Lena's gas a little bit ago came back good - in the 200s. They're not going to do anything now, but maybe after the 11:00pm gas.

Well, I'm off to change a diaper. :-) Lena's!

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
But do not overlook this one fact, beloved, that with the Lord one day is as a thousand years, and a thousand years as one day.
The Lord is not slow to fulfil His promise as some count slowness, but is patient toward you, not wishing that any should perish, but that all should reach repentance. - 2 Peter 3:8-9

Fastest train yet (June 18)

So yesterday wasn't a bad day at all, it was just bumpy - a lot of going back and forth, but not going back much. By last night Lena was back to 60% oxygen and had pretty good gases last night and early this morning, but her 11:00am and 5:00pm gases today were so good that they weaned her down to 10ppm nitric again and then down to 5ppm. They are also weaning Lena's O2 1% every hour so she is now down to 54% on her ventilator. They have upped her feedings again to 20mL and she has been tolerating them very well. So it's a very good day for Lena - I just hope they're not moving too quickly at the moment - we don't want to have to take a big step back after making so much progress, but I trust Lena's medical team to watch her like a hawk and slow down at any sign of backsliding.

We had a good day, but I have felt really drained all day. Cara had a breakdown at one point - I think she needed it because she hasn't really cried in several days. We spent the night in Boone and went to church this morning and then I was planning on doing some shut-in visits this afternoon, but I decided against it because I didn't think I'd be worth much - I was feeling a touch depressed so it was nice to come here to some great news. We had a wonderful time at the zoo yesterday. Eli loved seeing all the animals and people - and especially all the chipmunks running around everywhere. It was warm, but not unbearable so we really did enjoy ourselves.

Well, lets hope that Lena's night tonight is as good as her day was. I have added to my signature the website that a few people have written back to tell me was really good in explaining the PPHN as well as Cara's blog site which has all the past updates as well as Lena's birth story from Cara's perspective - Cara just posted yesterday.

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
The Lord is not slow to fulfil His promise as some count slowness - 2 Peter 3:9a
http://kidshealth.org/parent/medical/heart/pphn.html
http://wifeandmama.blogspot.com/ - Past updates posted as comments under "Still Pregnant."


Train continues at full speed (June 19)

Lena had another good night last night and a good day so far. Lena is down to 39% O2 now and they will continue weaning 1% every hour until they get to 30% and then stay there through the night. Lena's nitric oxide is down to 2ppm - almost gone!!! It doesn't surprise us or the nurses one bit that since Lena has been receiving her Mama's milk things have been moving along so smoothly. It's exciting to see the end of the PPHN in sight - so long as we don't hit any more big bumps. :-)

I forgot to write yesterday about the cool thing that the hospital did for me. When we got here there was a really good postcard of Lena with "Happy Father's Day, Love Lena" written on it, stuffed into a nice homemade card that had a poem and Lena's footprint in it. It meant a lot to Cara and I that they did that.

Well, off to lunch.

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
The Lord is not slow to fulfil His promise as some count slowness - 2 Peter 3:9a
http://kidshealth.org/parent/medical/heart/pphn.html
http://wifeandmama.blogspot.com/ - Past updates posted as comments under "Still Pregnant."


Guess who’s off her ventilator? (June 20)

Lena had another good night. They kept weaning her nitric oxide until she was off of it at 6:00 this morning and sometime around noon they took her off her ventilator and put the oxygen hood back over her. Lena's been breathing pretty well on her own - not great, but she'll get better with some practice.

I have more to write later, but we're getting ready to leave for the hospital now. I just wanted to share the wonderful news!!!!

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
The Lord is not slow to fulfil His promise as some count slowness - 2 Peter 3:9a
http://kidshealth.org/parent/medical/heart/pphn.html
http://wifeandmama.blogspot.com/ - Past updates posted as comments under "Still Pregnant."


Holding our daughter :-) (June 21)

I apologize for not writing yet today - I know some of you expressed concern. That was very kind of you.

Lena had a good day yesterday. She was extubated and then they increased her oxygen to 45% in the dome she was in because her gases went down a little bit, but she did really well through the night and by morning they decided to take the arterial line out of her bellybutton and they took the dome off and switched to a CPAP (one of those tubes that runs under your nose with the two prongs going up into your nose to give you oxygen). They are now decreasing that oxygen by 1% every hour and Lena is breathing very well on her own.

The reason I didn't write this morning with the good news of her arterial line coming out or them putting the CPAP on is because they teased us with the idea that we might get to hold her and then they said she was acting up too much in the early afternoon so I wanted to wait until I knew for sure whether or not we were actually going to get to hold her before writing this email. At 5:00 this evening, after a good respiratory treatment and Lena being a good, calm girl, Cara got to hold her for the first time since she was first born....AND LENA DID BEAUTIFULLY!!!!! Lena was so calm and relaxed and her numbers stayed so good and she breathed well and was as well-behaved as we could've hoped she would be. Cara held her for about 2 hours - and then I got to hold her. Both Cara and I practiced what they call "Kangaroo Care" which is where you hold the baby skin-to-skin - so we didn't have our shirts on. The nurse really encouraged it and we were going to ask about it anyway. The nurse actually believes that is part of why Lena did so well, because she was getting all the warmth she needed from our touch and she was getting that contact she desperately needed. She remained even more calm while I held her - we think it was because I talked and sang the whole time I had her and my low voice was a great comfort to her.

When it was time for her diaper change and exam I sat with Lena and talked with her and she just kept staring and staring at me - I couldn't take my eyes off of her either. She squeezed my finger and really suckled a lot when I had my pinky in her mouth - a REALLY good sign when it comes to nursing. It was one of the hardest things I've had to do yet, saying goodbye to her tonight - but we had to go and get Eli to bed at a descent time after being up with him so late last night.

I think that today, for the first time, I have fallen totally, completely, madly in love with my little Lena Rose. It happened the first time with Eli when he was about 2 1/2 hours old and I held him for the first time and as I was talking to him he sneezed in my face, but with Lena it was after I held her and as she gazed up at me in a way she hasn't gazed at me yet - I felt the connection that I have been longing for so much. I just want to hold her forever and never let go of her - and I know right now that she wants the same thing. I never thought I could be as close to another child as I am to Eli - I have been blessed to have such an amazing relationship with him and I worried that I would never be able to love another child that much, and though I always knew that would change when Lena came along, I could never completely comprehend it until now. I thank God for my beautiful children and my loving and devoted wife.

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
The Lord is not slow to fulfil His promise as some count slowness - 2 Peter 3:9a
http://kidshealth.org/parent/medical/heart/pphn.html
http://wifeandmama.blogspot.com/ - Past updates posted as comments under "Still Pregnant."

Genevieve said...

I'm sorry, I'm sorry, I'm sorry - I've been so busy and I have found it very hard to drag myself away from Lena now that I'm building a relationship with her. It's amazing to see how she's changed since we've been able to hold her. It's like she's a different baby. She looks at us differently now - I love seeing the look on her face every time I start talking to her. Her eyes get so wide and I swear she smiled at me today - like 3 times in a row. I was going to console her when she woke up and was crying and as soon as I put my hand on her and started talking to her she got quiet and looked at me and opened her mouth wide and just seemed to have that bright happy look in her eyes. And it seems like every time she is mad about something she calms down the moment Cara or I talk to her. This is the way it's supposed to be and it makes it easier to bear the days here at the hospital.

Lena Rose has been improving very well. She loves being held and has been tolerating her feedings well - she's up to 35mL every 3 hours - 30mL is an ounce. They're going up by 5mL every 12 hours. They are slowly weaning her oxygen and her methadone - the oxygen is down to 27% right now - just 6% from room air - and she's doing very well with that. Lena can go home on the methadone and on the oxygen now that she is getting the oxygen through the CPAP, but they think she'll probably get off at least the oxygen before she goes home - the methadone can be given orally.

A nurse practitioner talked with us this morning and said that Cara may be able to attempt nursing by the end of the weekend or early next week. Lena's throat seems to be healing up well and he lungs are recovering well now - she was slow to start recovering, but now that she's getting Mama's milk and getting the physical touch she needs she's picking up speed nicely. So if she starts trying to nurse by Monday or Tuesday does well with it we could be discharged by the end of the week or early the following week - and she's giving us good signs there, too. She roots quite a bit and likes to suck on her pacifier or our finger, so we will build on those positives and not push her too hard to make the experience unpleasant.

Lena is having her MRI and EEG as well as an eye exam on Monday to see if any of this stuff has damaged her eyes - they don't think it has, but they're going to check to be sure. I asked the nurse practitioner what they were predicting the outcome of the MRI and EEG to be and she said had I asked her that when Lena was 2 days old, after having seizures and being through such a traumatic birth and having so many problems she would've said there's a good chance she had quite a bit of brain loss and would have severe permanent damage, but now that she's gone over 3 weeks without a seizure and is maintaining a good temperature and is awake and lively and getting less and less irritable and giving us so many good signs - it's looking like we are going to have very good results. I mean there still may be some neurological damage, but it will probably be minimal. But she said we're strong and we'll be able to deal with whatever the outcome and thrive as a family. It meant a lot that she had such a positive attitude.

So things just keep getting better and better - Lena's definitely recovering - not labelled critical anymore, and not at as much risk for backsliding. Oh, and they have downgraded the status of her lungs from PPHN to Chronic Lung Disease - getting less and less chronic everyday. Her X-ray this morning showed great improvement. So we're extremely thankful for all of this improvement. We love our little girl and we love holding her and can't wait to bring her home. The end of the tunnel is close at hand.

Thank you again for all of your support and prayers.

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
The Lord is not slow to fulfill His promise as some count slowness - 2 Peter 3:9a

Genevieve said...

So much happening

During their closing rounds this afternoon the nurse practitioner said to the doctors, "We dodn't expect any issues with Lena tonight - she's busy being spoiled." Lena LOVES to be held and the nurses who have loved her so much are getting a little tired of holding her all the time to keep her calm - not that she's a bad girl, she just demands a lot of attention and thrives off of that attention. The only problem we've had with her today was early this morning when she projectile vomited all the milk they were giving her - they don't believe it is a response to the food, but a response to the weaning of the methadone. It's been a "2 steps forward, 1 step back, 2 steps forward, 2 steps back" kind of process.

Lena is down to 25% oxygen and will probably come off of it before coming home because she has been responding very well to that weaning. They got rid of her lipids today (the fat emulsions she was receiveing) and are hoping to get rid of her IV fluids tomorrow or at the latest Monday, now that she's receiving so much milk. They go up on her feedings every 12 hours by 5mL - right now she is at 45mL and the goal is 80mL.

The nurse who had her today was so excited about Lena's progress from even a few days ago and loved moving around and having Lena follow her with her eyes. Lena has been very wide-eyed between her cat naps and is oh so fun to hold and make faces at. By the way, since she tolerates being held so well and obviously enjoys it so much, any visitors are welcome to hold her so long as she remains calm and is not sound asleep to begin with - since she's awake so much we try not to disurb her while she's sleeping. Pastor Watkins, my supervisor, was the first visitor to be able to hold Lena today and he has claimed those bragging rights that he will use on everyone he sees now.

Lena also had a nice visit from our Chiropracter today who made a couple small adjustments on her - I'm sure that'll help the healing process even more. It meant a lot to us that Dr. Moss came to see us. We will probably be asking his wife, Angie, to be Cara's lactation consultant as Lena will be starting to nurse within the next few days.

So I had a very well-intentioned nurse tell me yesterday that we should consider having our next baby in a hospital. Cara and I didn't take any offense to it (we may have if it was right after Lena was born and emotions were running high), but we actually got a good laugh out of it. I don't think most people understand the conviction that homebirth advocates have, and the fact that one rare and bad circumstance isn't going to diminish that conviction. Someone who gets in a car accident isn't going to stop riding in cars for the rest of their life, nor are they going to call an ambulance to take them everywhere they go just in case anything bad happens. Driving in a car isn't an illness and giving birth isn't an illness and we're not going to let this one bad experience destroy my faith in our creator who has made Cara's body beautifully to do this thing that modern society has told us is unnatural and requires the care of a professional who is trained to treat sick people. But, just as my dad, after being in a terrible car accident about 15 years ago, started wearing a seatbelt all the time and perhaps drove more alertly, so, too, will we take extra precautions with our next homebirth, especially since we know Cara's labors are extremely short and since we know that Lena may have not been so big (and may have not gotten stuck) had we followed our midwife's advice to avoid all the sugar that made Lena grow so big - all things that we can't change about Lena's birth, but knowledge that we can build on to make the next experience a much more joyful one as Eli's was. We will try to have a midwife who is much closer, and if we don't we will have a doula who is close and can be with us just in case, we will make sure the midwife comes the moment Cara thinks labor MIGHT begin and we will even commit to go to a hospital if Cara feels the need to push and the trained professional isn't there yet. But we know you can't beat the wonderful prenatal and postpartum care we have received from both of our midwives and, as I have said before, you can't beat a midwife's statistics - Lena was our midwife's first transfer to Blank Children's Hospital in 7 years. I'd like to see an O.B. try to beat that. :-)

So I've had that on my mind the last couple days - I hope I didn't offend anybody by being so blunt about our beliefs. But then I like to say what's on my mind and I like it when other people do the same. :-) Hope y'all are having a great weekend.

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
The Lord is not slow to fulfill His promise as some count slowness - 2 Peter 3:9a

Genevieve said...

Lena was taken off of the oxygen early this morning (she wasn't even down to 21%, but the doctor thought she was doing really well and didn't expect a problem). They left the nasal canula (the tube with the two prongs through which the oxygen was flowing to her nose) on her face until about noon and she was maintaining really good numbers do they took it off - so now the only thing on her face is the little feeding tube that is going into her nose and then she's still got that line going in her arm that will come out tomorrow when they take her off of her IV. She's been a very good girl and they are starting to very slowly wean the methadone again. The respiratory therapists are stopping the pounding treatments she was getting to her chest because they think she can work up that stuff on her own now - they're going to monitor her for a couple days to make sure. She is still receiving her zoponex through a nebulizer every 8 hours I believe - Zoponex is an asthma medication (don't worry, Lena does NOT have asthma) that helps expand her lungs as they continue to heal so well. At the moment Lena is getting ready for her EEG - they have to stick 40-some probes all over her head and some on other parts of her body - thankfully Lena was sleeping when they took her down and hopefully she will stay asleep - otherwise she may be very miserable. Her MRI went very smoothly this morning. They were even surprized at how quickly they got her down and back - I don't think it was much more than a half hour. They said they usually have to give babies a second dose of the sedative, but Lena slept right through it and they got everything on the first try. We'll hope the EEG goes that well. We'll probably get the results of the MRI tomorrow and I haven't asked yet about the EEG - I would assume we'll get those results tomorrow.

A nurse we know in Indiana sent me some information that I wanted to pass along. I think it's very encouraging after all we've been through and it meant a lot that she would take the time to share it:

[ I happen to have a book from the National Institutes of Health called Report of the Workshop on Acute Perinatal Asphyxia in Term Infants. It is a very complex book intended for physicians, but it is a compilation of presentations and articles from an international workshop on this topic sponsored by the AAP and ACOG. In reading the section of long-term outcomes, I found some things I thought you might find interesting.
"Current evidence is that irreversible brain damage from asphyxia during birth in term infants is very uncommon." This author also states the signs of neurological problems early on are not specific - that infants who are truly in trouble will have similar early signs with the very much larger number of infants who will fare well.
"Developmental abnormalities observed early in infancy may be transient of limited prognostic significance."
"None of the mild encephalopathy children developed disabilities and 21 percent of the moderate encephalopathy infants developed later disability."
"8 percent developed severe neurological abnormalities"
"Fully 75 percent had a normal outcome, 10 percent had mild handicap, 5 percent had moderate or severe handicap."
Anyway, I found these studies very encouraging so I thought I would share them with you. The numbers with severe disability were low and these babies tended to be very critical and in poor neurological condition even at discharge, particularly with continuing seizures. Sounds like Lena is getting excellent care and doing great, though. ]

And truly Lena is in very good condition now and has not had any seizure activity and is recovering nicely. Results we can expect from these tests today may show some damage, but even that doesn't mean much because babies have often been known to use another part of their brain to perform the function the damaged part should be doing. But more than anything, these tests will show us what could possibly happen and therapy we could do to encourage Lena's brain and body. So as I've said before, we're expecting a good outcome. Lena's acting too much like a normal baby to expect any less at this point. And we need to treat her like a normal baby and encourage her in the same way we encourage her brother to grow and thrive - if we treat her like a baby who could be slow, then she will only rise to that level, but if we lovingly encourage her as someone who could be an Einstein, then she will far exceed any expectations we could ever have for her. But regardless of any of this, Lena Rose is my little girl and I love her dearly - no matter what.

The doctor gave the okay to start nursing - non-nutritive to begin with, so Cara will pump right before nursing and then we will encourage Lena to latch on and get comfortable with the motions as she is receiving Cara's milk through the feeding tube. We'll try this once or twice a day for the next couple days and build on her strengths.

So that's about it for now - I've gotten to hold Lena Rose about 3 hours total already today. I am super-dad. I have the magic touch. I picked her up twice when she was throwing a fit and got her to calm down and go to sleep within a couple minutes tops! I try not to brag too much, but I'm the best papa in the world - it's true. And the nurse made a comment about how adorable our children are - that they really are beautiful - they both have big eyes and cute faces. I promise I didn't prompt her, but then I couldn't argue one bit - like I've said before, I feel sorry for all you other parents whose kids aren't as cute as mine. But then I guess this whole paragraph just comes with being a proud father. God has richly blessed me - infinitely more than I deserve.



In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rse
The Lord is not slow to fulfill His promise as some count slowness - 2 Peter 3:9a

Genevieve said...

Our normal, but extra special girl (June 27 evening)

Lena's test results are in - her eye exam, hearing test, MRI and EEG all came back normal. As I have said so many times, I wasn't too worried, but I was at least expecting them to let us know that there were some possibilities they had found - nothing! Everything is fine. Now there is always the possibility that a developmental problem could develop along the way, but that's nothing to worry about any more than we would with Eli or any other child. Lena will be evaluated for her development over the next 5 years - beginning every 4 months and then with each good evaluation the time will lengthen in between each evaluation until she reaches school age.

Lena also came off of the IV today so that blasted catheter is out of her arm. Now all she's got is the feeding tube in her nose and a few probes stuck to her chest and belly that are monitoring her blood pressure, oxygen saturation, and breathing. Though we obviously don't want to be ripping those off when we pick her up, the nurses say it wouldn't be a problem at all because they can be put back on very easily. So it feels more and more like holding a normal little baby and less like she's a delicate and complicated doll.

We had a good start on nursing - as good as can be expected. Lena is very interested and tries to latch on, but she hasn't gotten much of a good latch yet. Cara's going to try one more time this evening and then they may let us do it more than twice tomorrow. Cara's going to start holding her close to her breast at every feeding so that Lena makes the association between Mama's breast and a happy tummy. Hopefully her responses will continue to improve as she gets used to this very normal and natural concept that she has to relearn. But I definetly think we had a good start and the nurse and doctors were pretty cooperative with us today. One day at a time.

Last night was really hard on me - the stress of starting the nursing process and meeting some opposition at first from the medical team got me thinking a lot about the birth and I just kept thinking, "If only I would've asked the midwife to come the moment we knew Cara was in labor," and "Why didn't I encourage Cara more in pushing to get Lena out faster," and I just kept going around and around these things in my mind and it got me VERY depressed and couldn't fall asleep. I got up to watch a tv movie and would try at almost every commercial to go to bed and finally I got my mind on something else long enough to dose off at 3:30 this morning. Holding Lena today has reversed all of that as she looked at me with those beautiful big eyes and those rosy cheeks and that fluffy, just washed hair. I just have to focus on all of these wonderful positives we've been given and thank God for my precious children.

Glad I could send such good news today. God bless you all!

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
The Lord is not slow to fulfill His promise as some count slowness - 2 Peter 3:9a


1st big nursing success (June 27 late evening)

Lena was having a hard time getting a good latch this evening, but once she did she was on Cara's nipple very well and rested for a few moments and then we heard the beautiful sound of swallowing. When the nurse came in a few minutes later and we told her she was latched on she could hardly believe it and when Lena pulled off she drew the contents out through the tube in her nose and it was 5mL - a really good start - so she just measured the rest of Lena's milk accordingly. She never caughed or gagged and we are just so proud of our little nurser (and her Mama who worked so hard to motivate Lena). This is an even bigger joy for us than the MRI and EEG results because as I've said time and time again, I wasn't really that worried about those, but Lena moving forward in nursing means she's that much closer to coming home. Once she's getting a full feeding worth by breast she can go home!

Thanks be to God for beautifully making Mama and Baby to have such a wonderful and meaningful bond. Thanks be to God for m beautiful ladies (and my little beau as well). Eli and I are staying in a respite room here in the hospital tonight. We were going to stay at the Ronald McDonald house (our midwife is expecting some births anytime at the birth center - that's why we're not there anymore), but the nurses offered us the respite room free of charge since it wasn't spoken for yet. Cara will be sleeping in Lena's room so she can hold her if she gets fussy and possible during feedings.

I'm so glad I've been able to give you even more good news - I can see the end of the tunnel and man does it look good! :-)

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
The Lord is not slow to fulfill His promise as some count slowness - 2 Peter 3:9a


Another slightly bigger success (June 28 afternoon)

Lena doubled the amount she got last night when she nursed again this morning - she got 10mL. They're going to let Cara nurse Lena 3 times today - Lena does get rather worked up before she gets the hang of it and we don't want her getting too stressed, but I hope that today gives even more positive results so we can go up a feeding tomorrow - I also hope she starts getting much more volume out of each nursing. But we're so glad she's moving forward. They're probably going to end Lena Rose's Xopenex (I spelled it wrong the last time I wrote it - just by the way it sounds - "zopenex") within a couple days. They already ended her chest pounding respiratory therapy and she hasn't had any problems so they think she's probably ready to end the Xopenex treatments as well - her lungs have really cleared up a lot and she's doing better and better everyday.

I find it really hard to see these new parents who are just coming in this week with their new babies - I feel like our month here has lasted an eternity and it's such a relief (and yet frustrating at the same time) to be so close to the end. I hate seeing people just on the beginning of that journey and knowing the long, hard days they face - especially the ones with babies that are so small that they are expected to be here for a couple months. It's been hard enough for Cara and I to get back some sense of normality and for me to get some work done - I hate to watch other people have to do this for even longer. I talked to a lady the other day who has 2 girls at home 45 minutes away and an older step-son and the medical team has asked them to come only every other day because their son gets too aggitated with new people in the room. It's hard enough for us to see Lena every day and have to leave her at night or go the whole morning and early afternoon sometimes without seeing her. Now that I've been through this I wish I could take it all away from everyonet else who has to struggle through it. Just hearing people talk about their baby being on nitric and being happy that the baby is now down to 97% oxygen breaks my heart because it seems like that was so long ago for us and yet Lena is still here recovering. As positive as we've been througout all of this, we've still been ready for it to be over from day one. God bless each baby here and their families and give them the patience to make it through this without aging 20 years. :-)

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
The Lord is not slow to fulfill His promise as some count slowness - 2 Peter 3:9a


A little faster (June 28 evening)

Lena got the same amount at this evening's nursing, 10mL, but she got it in a faster time and she latched on almost immediately and didn't get very fussy at all. So we're making even more progress. Let's hope that tonight's feeding is even better and that they continue that way and lets also hope that this is encouragement for the medical team to increase the frequency of nursings.

Cara and I went to an infant CPR class tonight and had a lot of fun. The was one other couple there with their baby that just got discharged a couple weeks ago. The teacher was a comedian and really made it enjoyable and Eli was pretty good during the class. Eli and I are going to stay in the respite room again tonight and then we'll go home fairly early tomorrow and leave Cara here all day and night so I can get some things done back in Boone. It'll be hard to be separated for so long, but I think we've had a lot of positives to make it easier now and Cara will have Lena Rose to keep her company.

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rse
The Lord is not slow to fulfill His promise as some count slowness - 2 Peter 3:9a


My bouncing baby girl (June 29 afternoon)

I had a lot of fun today testing Lena Rose's limits. I held her with her head on my knees and her feet at my tummy and made faces at her and kinda bounced her around a lot (her neck muscles are so strong that you don't need to support her head much - you can lift her under her arms gently and she holds her head up just fine), and had her dancing and had Eli sitting next to me playing with Lena - he's pretty gentle, but he did get pretty ornery a few times and even pinched her arm at one point and she just chose to ignore it along with the time he poked her eye. By the end of it all Lena was getting little tired of it all and though she only started crying a tiny bit at one point (partially announcing her need for a diaper change) I could tell she was ready for some rest so I swaddled her up nice and tight and layed her in her crib and she quieted down and became very content. It was a lot of fun. :-)

All we're waiting for now is for Lena to get all of her food through nursing. They want to see her steadily gaining weight (she's 10lb 2oz right now). This morning's nursing went well - she wasn't very fussy to begin with and she didn't stop to take big breaths like she had in previous feedings. She still only got 10mL, but then that's normal for a baby just learning to nurse, even exceeding what a newborn would normally get the first couple days of life, so we're happy for her progress.

Eli and I are going back to Boone today and we're going to spend the night there tonight and come back tomorrow afternoon. It'll be hard to be away from Cara and Lena for so long, but I'm sure we'll all be fine. Gotta go with Cara to get some stuff from the store before we go (and we haven't eaten breakfast yet and we've been up for 4 hours - eek).

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rse
The Lord is not slow to fulfill His promise as some count slowness - 2 Peter 3:9a

Genevieve said...

A NOTE FROM CARA

After having such a goog nursing yesterday morning, I was sure that Lena would continue to do very well. However, when I tried to nurse her at 7pm she just screamed and fell asleep. I tried again at 10pm, same thing except she didn't get as upset. She just decided that she was too tired. (They didn't write that one on her chart.) So we tried again at 7am. She was wide awake and seemed very happy, so I thought that she would do well. She never screamed, but she just wan't interested in nursing. Eventually she fell asleep. I think part of her sleepyness is the methadone.

So, when her 10am nursing came around, I wasn't planning to try to nurse so she could have a break, but she was just rooting around so much that the nurse, Robin, and I agreed that we would give her a chance. Lo and behold she latched on right away! Praise God! She nursed hard for almost 15 minutes, fell asleep when she started to get full, and then had a nice little burp. We didn't get the chance to weigh her before she nursed, so Robin had to pull it out of her tummy through her feeding tube to see how much she got. I was holding Lena upright at the time, and Robin was able to pull out 12mL easy. They ended up giving her credit for 25mL!

I spoke with Lisa, one of the nurse practitioners, just after that and we came to the agreement that she would bring it up to the team that I am willing to not push Lena hard and they would let me try nursing her at each feeding. I haven't heard back yet. I told her that I just want to have the freedom to nurse her whenever, AS LONG AS LENA IS UP FOR IT. If she were asleep and I put her to breast and after let's say 5 minutes she didn't go for it, I wouldn't force it on her. (I wouldn't do that anyway!) We will let you know what they say.

That's my update on Lena. We really hope to get more pictures out soon. Our home computer has not been letting me put them on and the ones here have things like that blocked. Lena pulled her feeding tube out one day, so we took some pictures of her without her orange tape mustache. :) Thank you all for your prayers, cards, and emails. They mean so much to us. We're saving all the emails and will print them out and make a little book for Lena to have.

In Christ,
Cara

Genevieve said...

I warn you now, this is a REALLY long email!

Yesterday was a huge rollercoaster. After Cara wrote her email the doctors vetoed the request to allow Cara to attempt to nurse at each feeding. This was very disheartening because it sounded like it was really going to happen. We have been growing more and more frustrated with this nursing process as we have seen Lena showing much more desire to nurse than the team is allowing to be honored. The other problem is that with the methadone she is receiving, Lena is often too tired to nurse and just goes to sleep at the breast before even attempting. We fear that this is all holding her back as this is the last goal now to get her home.

So we sat down yesterday evening with one of the nurse practitioners as well as our midwife and talked through a lot of these things and expressed several concerns and those concernes were listened to and some were honored already and some have been compromised on and some are up in the air still - baby steps, but baby steps in the right direction. One of our compromises that we feel really good about is that they want to give Lena a bottle and we just won't do that - we want what is best for this bond to grow between Cara and Lena and we don't want to make that more difficult in the long run by confusing her with an artificial nipple that would make it harder for her to get a good latch. And obviously (and the team wouldn't ever argue with us on this) studies have repeatedly shown receiving breast milk directly from the breast is extremely important in the development of a child - far superior to a bottle and without the numerous health and developmental drawbacks that synthetic formula has. So our compromise was to try a SNS (Supplemental Nursing System) which is a little tube that goes right to Cara's nipple and helps increase the volume Lena is receiving by adding to her nursing some of the breastmilk Cara has already pumped. This was extremely successful - remember that yesterday morning we estimated that Lena received 25mL (90-95ish is her goal) and we were very happy with that. Last night and this morning when she used the SNS Lena received 45mL each time - that's half her goal! The team was very pleased with this and also increased Lena's nursings to 5 per day. That's over half her feedings - still not all, but a step in the right direction.

They are also not counting any feeding where Lena goes to sleep and won't nurse, which happens a lot, so technically Cara can probably try at almost every feeding. The nurse was great this morning and after Cara's 7:00am nursing (where the SNS decided no to work and Lena still did well by getting 15mL just from the breast) she decided to give Cara and Lena the opportunity again at the 10:00am feeding because Lena was awake and really rooting around a lot - and of course that was the one where she got 45mL again. So we didn't push for the 1:00pm feeding - we're trying to not be too big of a pain to them. :-)

Another area they willingly gave on was changing the time Lena receives her methadone so that its greatest peak (where she is sound asleep) and greatest dip (where she needs it again and is fussy) don't line up with feedings. So far it's seemed to work really well. We were thankful for that decision. They are also considering letting us take Lena home while she's still on the feeding tube if she's much closer to getting off of it. This would require us learning how to put it in and being good at not getting it down the wrong pipe - that's all we need is to fill her lungs with milk! They don't really like doing this and hopefully we won't have to, but it's a possibility they will consider. They also acknowledge that it is very important to us that Lena not receive any artificial calories along with her breastmilk or any extra vitamins - it is our firm belief that God made a mother's milk sufficient for a healthy and thriving baby. Their reasons for wanting to add calories are that it will help her grow faster and maybe give her more energy to nurse better - those are great reasons, but at our request they will try increasing volume to get the same desired effect. Lena has gotten so much artificial stuff already - we really want to give her body the most natural and nutritious stuff possible to build back up her recovering body and ONLY that - Mama's milk. The vitamins are something that a lot of people are doing now even with normal healthy babies - we simply don't believe it is necessary. Eli didn't need them to be the VERY healthy boy he is now and we once again believe that Cara's milk will be sufficient. It seems like they will honor us on this (technically they don't have a choice when it comes to the final decision, but they seem to respect pretty well our convictions).

So it really does feel like we made a huge stride yesterday - they are honoring a lot of our requests. We're both giving a bit with regards to the feedings - we'd like to see Lena nursing on demand and not on a 3 hour schedule and I think that may still be a possibility and we'd like to see them let Cara attempt nursing at every feeding without any constraints (except those that Lena puts on Cara herself). And we'd like to see them letting her out of here even before she's receiving her entire nutrition from the breast and SNS, but we'll all play that one by ear and see how Lena does over the next few days. They took Lena off of her oximeter (measures oxygen saturation) yesterday or the day before because her lungs are healed and are processing her oxygen just fine. We would love to see them take her off of the other monitors because they haven't been a problem at all (heartrate, blood pressure, and breathing rate), but for legal reasons that we simply cannot get around, no matter how much they trust us (and they do) and their nurses to keep an eye on Lena, they cannot take it off. They'd like to, but thir legal department won't allow it. And the other thing that we brought up that they said no to (and we won't argue it anymore) was the fact that she has had no issues at all the last several days with the weaning of her methadone - they are taking her down .2 every 2 days so she is at 1.4 at the moment and will go to 1.2 tomorrow. I thought, especially since it does stand in the way of nursing and she's doing so well, that it might be a good idea to try to pick up the speed of that just a little bit, but they don't want to risk it at all. So, I'm very thankful that the conversation went so well and that they listened so openly to our concerns (they had not been treating us with such openness the last several days - that's why we brought our midwife in and her professional opinion and expertise). It really felt like for the first time our voice was heard and acknowledged and that's a good feeling!

Now, the one other negative about yesterday, but something that nobody is too concerned about so don't let it worry you, is that a couple of Lena's numbers on various things came back a bit high and have been getting a bit higher over the last couple days, so they did some more tests and are going to do a liver ultrasound on Monday. Her bilirubin came back a bit high (this is usually an indicator of jaundice, but you can look at Lena and tell that she has NO jaundice), it could be that she has a viral infection which would clear up on its own without any intervention (this isn't a problem so long as it's not a very bad one and so long as she hasn't had it since she was in the womb which doesn't seem like a possibility), or it could be a response from her body that she isn't getting enough food. So we'll see what these tests say - as I said, it's not a big issue, but the longer Lena's here in the hospital, the greater the chances she could develop other infections, so we're all eager to get her out and home where she belongs.

One last positive before I wrap up this VERY LONG email - Lena's heartrate has been pretty consistant, but it was on the high end for a while and the last couple days it's been coming down into a much nicer range as she calms down in general, tenses up less, and reacts better to all of her cares. Lena had fairly poor range of motion simply because of how tense she was, but today we noticed her relaxing so much, especially as we would hold her up and have her stand - her legs would just go straight and limp where before she would scrunch them up and it was so hard to get her to lay them down. So Lena Rose is still getting better every day - she's made incredible strides the last week or two and we're so proud of her and can't wait to bring her home. God bless our beautiful children!

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
The Lord is not slow to fulfill His promise as some count slowness - 2 Peter 3:9a

Genevieve said...

Lena's had a good, quiet last couple days. She does really well at some nursings and not so well at others. Cara's allowed to try at each feeding time. Today Lena got 65mL at one nursing and there was another one where the scale was off on the first weighing and said she lost 10 grams. So they estimated it at 45, but looking back that was way under because she made some crazy faces as the last of the 65mL they put in the tube were going in, she still had some left in her tummy when it was time for the next feeding (that never happens - she always digests everything), and Cara pumped much less than normal after the feeding. So we think it was probably around 60-65 again. We'll hope for a bunch more like that. We're really pushing for demand feedings - there are several times Lena is getting hungry and rooting around an hour before her feeding time and then gets so upset when they don't feed her that she wears herself out and won't eat when they do say it is time. There are also times (especially in the evening and at night) when she's not hungry when Cara goes to nurse her and starts waking up halfway into the tube feeding - if we'd let her wake up and nurse when she wanted then she might do much better. So we're proposing a plan tomorrow to implement demand feedings for 24 hours and see how it goes. We'll see if they take the bait and are willing to compromise for at least 12 hours.

Eli went with his Uncle Randy this evening to Nebraska to visit Great Grandma Lillian and her dog Elly. They're going to be there a day or two until they go to Oklahoma. We miss him very much, but it's nice to have the stress of taking care of him lifted off of my back during this time that is already so stressful.

Well, up to the respite room to get some much needed sleep. I'm still recovering from Saturday night of only a couple hours of unrestful sleep. Cara called me at 10:00 Saturday after Eli and I had gotten back from Des Moines and I was putting Eli to bed. The hospital freezers were running out of her milk and they didn't know if they'd have enough to get through the next morning so Eli and I hopped into the car with a cooler full of the milk we had stored in our freezer. Eli was awake for the whole rids down and part of the ride back (about 50 minutes each way). I drank a lot of coffee and ate candy and chips to keep myself awake, but unfortunately they made it hard for me to get to sleep when we did get back home. The lack of sleep made me extra-emotional on Sunday morning and several people saw me break down and cry. As I've said so many times before, I am ready for this all to be over. I am so thankful that Lena is going in the right direction.



In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
The Lord is not slow to fulfill His promise as some count slowness - 2 Peter 3:9a

Genevieve said...

Negotiating (from yesterday evening)

We had a really good talk with one of the neonatologists this afternoon. They are going to let us try a 24 hour period of demand nursing by Lena with no tube in her nose. If it goes well they will consider sending Lena home pretty quickly. If not we will revisit the idea of sending her home on the feeding tube to work on nursing in a more comfortable environment. I feel like it was another good discussion that will bear wonderful fruits.

I'm heading home for the night and will be coming back tomorrow evening after church. I hate that I can't be here for this experiment, but we will try to have other people here to support Cara as much as possible.

Eli arrived safely in Oklahoma. He was excited to get there to familiar faces - especially his youngest aunties and uncles with whom Eli loves to play. He was also very happy to see their dog, Star.

Well, I'm off to say my goodbyes to Cara and Lena.

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
The Lord is not slow to fulfill His promise as some count slowness - 2 Peter 3:9a

Genevieve said...

80%

So in my last email I said that Lena had great consistency and got a little less than half of the volume they wanted her to get on Thursday (they said she can go home when she gets 80% or more 2 days in a row). Friday morning she was doing even better nursing so they said we'll just continue to monitor her progress. Friday she got maybe 60% or so of the 800mL they want her to get - so still going in the right direction. Yesterday Lena got right at 80%. We estimated that she needs to get 53mL per every 2 hour nursing to meet the 80%. This morning she got 60mL at her first nursing and 120mL at her 2nd feeding!!!!! She's gotten 60% at every feeding since then. We're so proud of her. Lena has an ultrasound scheduled tomorrow (Monday) to check her liver and spleen because of those somewhat elevated numbers (the ultrasound was supposed to be last Monday, but I think they forgot), but pending it's results, Lena has met their criteria to go home. So we'll have to see what they say tomorrow.

There are a lot of things we've given into over the last several weeks, but when it got to be stuff that we are very passionate about it was time to take a firm stand - and look where it's gotten us now! Lena, today and yesterday, is getting 80% or more of the amount they want her to get - DOING IT OUR WAY!!!!! They tried again to get Cara to do a bottle and they kept using the argument that it will get us out of the hospital faster and then we can work on breastfeeding at home. The chances of a baby learning to take the breast after getting their first strong foundation on a bottle are extremely poor - among HEALTHY babies - you can only imagine how much worse it would be with a baby like Lena who was sick. It's a risk we're not willing to take. Besides, they tried to get her to take her methadone through a bottle the first day she was without the tube in her nose - she hated it and spit the methadone all over the place - that's my good girl who knows what's best for her!!! :-) Cara tried to get them to give it to her by mouth with a syringe and the nurse kept saying, "no, we don't do that for fear of aspiration." Come on! Yeah, we're really worried about Lena aspirating anything after how well she's been nursing (please note my sarcasm). Eventually when the nurse couldn't get Lena to take it any other way she tried Cara's way - and are you the slightest bit surprized that Lena took every bit of the methadone with no problem at all and has done so since then?!

We find it so funny that everything we've suggested and twisted their arm to finally do has worked. The changing of the methadone schedule, the adding of the supplementer instead of a bottle, the demand feeding, taking the nose tube out. Thos last two they gave into with the strong note of, 'we'll try it your way for a day and when it fails you DON'T argue with us anymore.' I'm glad I didn't have to eat my words on that. Forgive me for being so pompous about all this, but after what we've been through the last few weeks trying to stand up for our daughter's right to eat when and how she wants and not have to do so on anyone else's schedule - well, it's just nice to know that she is getting what is best for her now. I think I'm getting much more bold than I have ever been before after all of this. I was so much more tentative at first, but I think we all have to stand firm in what we believe and not worry so much about offending people or stiring things up, but taking that stance as nicely, compassionately, and in the friendliest, most firm way possible - especially when it means standing up for someone you love. It's EXTREMELY hard, and I think sometimes it takes a little taste of success to motivate you to go on, and as I said before there are a lot of things that we look back to know that we probably shouldn't given into. I know there are many of you who think we should've been more insistent that they let us hold Lena - I mean she went 3 weeks of her life without being held!!! And you're right - we should've put our foot down. We probably shouldn't have let them give her the lipids they were giving her before she got breastmilk and before the breastmilk volume was really high - those lipids contained soy and eggs - both are things that you aren't supposed to give babies because of the high risk of developing allergies and we should've just pushed for them to give Lena breastmilk earlier. But as much as those are things we should've taken a stand on, they are also things we are now able to hols up to them and say, "look how patient we've been, now it's our turn to stand up for what is right for our daughter." I absolutely believe with all my heart that Blank Children's Hospital was where Lena needed to be for her PPHN and to stabalize her after her traumatic birth. I believe that the doctors have amazing skills that helped Lena tremendously. But I also know that there are things that parents know best on, especially parents with a little bit of experience, some read and aquired knowledge, instincts, and a lot of love, and these parents think that Lena needed to be home 2 weeks ago, but have been patient with that as well. So we'll say goodbye to the nurses who were always so great to us and showed Lena so much love. We'll say goodbye to the doctors and that wonderful expertise and care that they showed Lena and we will forever remember the support we have received from ALL OF YOU as well as our midwife and her team and our church families, but we won't look back when we leave the hospital and we will take our girl to the place she should've been long ago - the beautiful place she started her life and the place that hasn't been right without her - her home.

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
The Lord is not slow to fulfill His promise as some count slowness - 2 Peter 3:9a

Genevieve said...

Well it appears my time here is almost done! This was the email received this afternoon (7/10)

Tomorrow

Lena is scheduled to come home tomorrow, July 11th, exactly 6 weeks from the day she arrived here. The doctors have been giving us the prescriptions for her methadone and the medicine to treat her thrush (an uncomfortable coating of yeast in the baby's mouth which is pretty common) and they've set up check-ups for this week and next with a pediatrician in Ames. I haven't heard the results of Lena's abdominal ultrasound yet. By morning rounds it hadn't been read yet and we haven't asked since. Lena surpassed the 80% (of milk volume) mark beautifully yesterday and has passed the 80% mark today with 2 feedings left.

All of the doctors are so surprized and they seem actually shocked at how well Lena's done, but we're not. :-) I guess we're not the ignorant little parents that they thought we were that can be patted on the head and told to listen to the professionals. As hard as it was to not give in to their pressure, I'm so glad we've stood firm by our beliefs and have been our daughter's strongest advocate. And now we get to bring Lena Rose home to the place where she can, one day about 15 years from now (just kidding :-)), watch her next sibling be born the way it should be. A very wise friend told me that even though the terror we felt when Lena was born and we thought she was dead will never completely go away, when we bring Lena home and watch her grow and see her witness the beauty of a normal homebirth, it will dispel that fear and restore all of our faith in God's ability to make women beautifully to take part in this miracle of childbirth in the safest, most natural, most comfortable, and most loving place possible - HOME!

In Christ we are your Servants,
Matthew, Cara, Eli, and Lena Rose
The Lord is not slow to fulfill His promise as some count slowness - 2 Peter 3:9a

Genevieve said...

HOME!!!!

Remember that Lena's 100% goal was 800mL per day and they wanted her to get 80% to leave - yesterday she got 810mL! Lena had a wonderful morning and was discharged and then I came to pick the two of them up and we had a great afternoon. We said our goodbyes and went over to the birth center and stayed for a couple hours. It was nice to have Lena there in that place that Cara and I had grown to love so much surrounded by people who have been so supportive of us.

We got to look at the placenta which had been cut up and preserved in fermaldahyde, but the bag of waters to which the umbi cord was attached was still intact. It was pretty strange. We had them save the umbilical cord for us and we are drying and preserving it as we did with Eli's cord. We formed Eli's cord into a heart and we were planning on doing the same with Lena's, but since it's been preserved in alcohol and sitting in a fridge it wasn't very pliable so we're forming it into an Ichthus (the fish symbol which represented Christ in the Early Christian Church). It's dehydrating in the oven right now on an aluminum pie plate. I know that probably sounds really gross to some of you, but once it dehydrates it looks and has a texture a lot like wicker - the grossest part is shaping it before it goes in the oven.

Lena has been in a really good mood all day - she's smiled a lot today and has tried repeatedly to nurse me when I hold her. I keep telling her that she's not going to get anywhere trying to nurse me, but she won't listen. It's so funny to us because that's not something that Eli ever tried to do to me.

What a joy it is to have Lena Rose home and to be able to spoil her and play with her and not worry about stupid monitors and schedules. It's so nice to enjoy her in the comfort home and the birth center and sitting at the table in the Sonic breezeway and carrying her over to the church and being able to just pick her up and take her and not have to tell her goodbye. Before Eli comes back this weekend we are planning on going out to a movie with her - it was always fun to take Eli to movies when he was really little because if he started stiring Cara could just put him to breast and he's stay quiet - but it's not a good idea to take a toddler to a movie so we haven't been to many in the last year. It's hard not having Eli here now, but I think it's good to help us adjust with a very easy baby who is as calm and happy as Lena Rose before bringing in the roudy noisemaker. But it will be nice to have our family together and whole. I am so thankful that this chapter in our life is closed. It's all over. We've got our little girl back. Thanks be to God.



In Christ we are your Servants,
Matthew, Cara, Eli, and Lena ROse
The Lord is not slow to fulfill His promise as some count slowness - 2 Peter 3:9a
http://kidshealth.org/parent/medical/heart/pphn.html