Lucy's Due Date

Today is Lucy's official due date!

She continues to do well with some occasional set-backs, all which seem to be related to her suctioning tube and the difficulty of keeping that in her throat all of the time - we cannot wait for that to be gone and for her to have a fully functional esophagus. As mentioned previously, we focused on growing and resting this week - and it seemed to work to Lucy's advantage! She is weighing it at around 5 lbs, 10 oz (a 7 oz gain from her birth weight) and is gaining between half of an ounce and an ounce per day.

This week, we are hoping that we will be able to get a better idea of when her surgery will be scheduled for and how long she will continue to have her anus dilated (all the nurses feel really bad when they have to do that!)

In the meantime, a few things I've learned over the past weeks:

- Lucy totally has Jason's eyes - as I'm sure you have not gazed into his handsome face as often as I have, you may not realize that his eyebrows slant down just the slightest bit and he has these gorgeous long eyelashes - both traits that Lucy has gotten. However, her hands, nose and chin are complete miniatures of mine!

- Watching a team of doctors work on your child when she is in respiratory distress or having a brady episode is quite possibly the worst, most helpless feeling in the world.

- Having a baby is stressful on a marriage. Being put on bedrest is stressful on a marriage. Have a premature baby that is in the NICU for 3 weeks and counting is extremely stressful on a marriage. I do not know how anyone could handle this without God as their Rock and without a loving spouse by their side.

- You can tell the difference between a doctor or nurse that has a passion for their jobs and one that does not. Thankfully, we have been blessed with amazing doctors and nurses with very few exceptions.

- God truly will not give you more than you can handle and He knows your limits better than you do.

- Sometimes a card, an email, a voicemail or a text message from someone just telling you that they are thinking of you will really help you get through the day.

- Extended hospital stays are really, really outrageously expensive. I may have mentioned that when I originally found out about Lucy's hydro I was at a Healthcare conference focused on the cost and quality of healthcare in America, among other things. Our current situation has made me realize how wonderful healthcare in America is and yet understand the need to do something to control the costs, which are outrageous. At a time in a person's life when they would literally spend whatever it takes to get better, the hospitals and insurance companies have the advantage over the consumer.

We will keep you posted as we have updates on Lucy's upcoming procedures.

Update

I cannot believe that Lucy is over 2 weeks old and less than a week away from her original due date!

She continues to do well in the NICU. Her biggest problem is with her suctioning tube in her esophagus - it is difficult for the nurses to get it placed right and have it stay in place - Lucy's little fingers have a way of finding the tube and yanking it out of her nose. This causes her to cough and gag on the saliva that she in unable to swallow and that isn't being properly suctioned and she tends to hold her breath until she gets it worked up. She was put back onto oxygen because she was having some periods of low blood oxygen levels. I am not personally convinced that she needs it, because I think her breathing disruptions are related to her suctioning issues, but we are hoping that those get resolved soon.

This week promises to be a quiet week, focused on Lucy growing and resting in preparation for her next surgery. As of yesterday, she was 5 lbs, 4 oz, so up one ounce from her birth weight. We still do not know when her next surgery will be, but have been told it will NOT be this week. Her only scheduled test this week is to take a closer look at her double aortic arch to get a better understanding of how the blood is flowing between the multiple veins and arteries and plan for how that can be resolved.

Jason and I are officially tired of the hospital - the drive, the food, the lack of being able to do anything for Lucy and simply not being HOME. Jason is taking his first work trip this week - 10 days in Fargo, North Dakota for a wrestling tournament. I am going back to work part-time starting at the end of this week so that I can take some time off when Lucy comes home. Prayers are definitely needed as we struggle to find the right balance between returning to our "normal" schedules and spending time with Lucy in the hospital.

Thank You for your continued encouragement and prayers. We appreciate every call, email, card and Facebook post and look forward to being able to introduce Lucy to all of you in person!

Happy 4th of July!

From all of us to all of you, Happy 4th of July from Colorado Springs! This is Lucy's first big holiday and in honor of it, the NICU had the babies who could handle being moved pose for a patriotic picture. As a mother, I did not love the experience - I feel more comfortable when she is safe and snug in her bed and and not being posed in a bucket. However, the results were pretty cute!

The big update for today is that Lucy graduated to the 7th floor NICU today. This is considered the "Graduate" NICU and is for babies who are stable and just need to eat and grow in preparation for going home. In Lucy's case, she will stay until she is ready for her next surgery. She is receiving close to 50 ml of breast milk with each feeding (just over 1.5 oz) and each feeding is fortified with extra nutrients so that she is getting extra calories, in the hopes of her being able to put on some weight. She is currently still around her birth weight, of 5 lbs, 3 oz.

Other than that, she has had a few ultrasounds, an EKG and some other tests in the past week. We discovered that she has a double aorta loop, which essentially means that her aorta splits and surrounds her trachea/esophagus instead of going to one side, like most people's do. It is not something that needs to be addressed at this point, but is good information for surgeons to know in preparation for her next surgery and may need to be repaired at some point. We also found out that all the chromosome and genetic testing they have done so far come back normal, which is a huge relief for us.

We are praising God every day for answered prayers. When we started this journey in March, we were all praying for her hydrocephalus to be under control, which it totally is! We were prepared for a C-Section and brain surgery shortly after birth, none of which we experienced. While we are dealing with Lucy's other health issues at the moment and she still may need to have a shunt put in at some point in the future, we continue to be assured that these are temporary issues that are fixable. We know that baby Lucy has a long road ahead of her, but we are so happy that we have a great God to put our trust in!

Eight days a week ...

The line from the legendary Beatles track has been in my head all day. Other songs have been in my head, but that isn't anything new when you consider how spastic my mind can be.

Today was Lucy's eighth day on this earth and it's been a real blessing to look over her little face, with a cute dimple on her right cheek and just wonder what her life will be filled with.

As Abby said the other day, Lucy had a CT scan on Wednesday and we found out this morning that the condition we only knew about before her birth has not been a major factor. It's been a real relief to know her hydrocephalus hasn't progressed and she doesn't need surgery now or in the immediate future. However, she might eventually need to have the shunt implanted later on, so we'll be keeping a watchful eye on how the fluid in her little head accumulates.

For Abby and I, this was a huge relief, not a total weight off our shoulders, but it takes one potential problem out of the picture, at least for a few months.

Five years ago, I never thought I'd end up getting married, let alone have a child who will depend on my care. I always wanted to get married and have kids, but the thought of it really did frighten me. This is why Abby, the rock that she is, has been the best person to share my life with.

Her parents came in on Monday and left today. They didn't seem like they wanted to leave. Harv, the normally mustached father-in-law, was tall and quiet as he watched Lucy in her little crib in the NICU. We still think it might be a number of weeks before we get to bring her home. I'm ballparking after I return from the Olympics in London.

We've started reading to her during the night care. Tonight, we're staying at the Ronald McDonald House a few blocks from the hospital. This place really caters to parents and the issues that arise with pregnancy. This place is nothing short of remarkable. This is definitely a charity we will be donating to in the future.

When I've read to Lucy, it's been like it's own little world. I zone out and look at her as she gazes up. Abby turns the pages. This is where I'm at real peace. Nothing else in this world is as important as reading to this little angel every night. After I read to her while I held her on Tuesday, my eyes welled and the emotion rushed over me. I never knew this type of love could exist.

As far as Lucy's health goes, Abby's been on diaper duty. I said I'd start in on it when we got home and there were no ears to hear my frustration. Because there WILL be diaper frustration from my end. My mom told me my dad only changed my diaper one time. Abby's assured me I will beat his record. "Poopy" stinks, even when the culprit is only five pounds.

Tonight, I saw the look of concern pour over two men who came into the NICU to see their little boys. One was airlifted in from another hospital and the look of confusion was clearly apparent in the father's face. I know what he's feeling. It's a helpless one, but like we found assurance with how well the nurses were handling our Lucy, I know he'll find the same assurance with their little boy.

So Lucy is improving and only has the one drainage tube through her nose. I hate it. I don't like seeing her with anything coming out of her nose, mouth or chest. It's again, a helpless feeling to know you can't help any more than just being there, holding her, watching her grasp your finger with those tiny little hands. We're doing everything we can and the help of the nurses in the NICU is amazing. They are true professionals of their craft and we couldn't be this stable and strong without their assistance.

Lucy's starting to show a bit of personality. She's got some of my mannerisms, which could just be attributed to not having full control over her limbs or eyelids yet. I do this one eye open thing in the morning, Lucy seems to do it. The more I look at her, the more I try to understand life.

She's being fed more, but I can't wait until the next surgery (with hope and a little bit of fear) when she will finally be able to eat normally. She's being fed more and loves her little pacifier.

So she's doing great considering what she's already been through and will continue to go through. We're thankful for all the support. I'm sorry I haven't been able to return all the texts and Facebook messages, but we were so overrun with an outpouring of prayers, well wishes and compliments, it's been a little hard to take in.

We appreciate everyone's kindness during this time. Lucy's already shown she's a fighter and she's got a wicked kick ... just ask the night nurse. I'll have to keep an eye out for it when we get her home, because if I don't, that eye will be blackened!

So that's the update, on the eighth day of the best week of my life!

JB

One Week Old!

Baby Lucy is one week old today! I can hardly believe that it was a week ago already that she was born.

She is doing very well in the NICU. At the beginning of the week, it seemed like every day we visited she was having another tube or apparatus removed and we could see a little bit more of our little girl. She was able to have her ventilator removed earlier this week and was on straight oxygen for about a day but the stopped that as well so she is just breathing "room air" at the moment. The doctors said that her lungs have recovered well after her first surgery and they are confident that they are well developed at this point. The highlight for us was, of course, getting to hold her (finally!).

She had a CT scan yesterday to get a better look at her ventricles and the fluid on her brain. We will meet with doctors sometime over the next few days to review the results and discuss the action plan going forward for her stent surgery. They expect to be able to repeat the surgery to connect her esophagus and her stomach in 3 - 4 weeks.

In the meantime, we continue to wait (sometimes more patiently that other times!) and trust in God's ultimate plan for baby Lucy. We have been staying at home at night and driving to the hospital for a good portion of the day. Jason continues to split his time between work, the hospital and home. My parents have been here since Monday and it's been great to have them help get caught up at home and help us with the drive from the Springs to Denver.

As a sidenote, you may have heard of the Colorado Springs wildfires that have recently made headline news. We are safe, we have not been evacuated and are not in immediate danger of having the fire reach our house. In addition to our family, please keep the residents of Colorado Springs in your prayers and all of the firefighters and emergency personnel that are here to fight the fire.

Home

I was discharged from the hospital yesterday and spent the first night at home in 25 days. Leaving baby Lucy behind at the hospital was heartbreaking, even though we were "prepared" for it. I'm sure every day will be difficult to have to return home empty-handed but hopefully it will get better. Even though there is not much we can do for her, it is hard to feel like it is OK to be at home when she is in the hospital.

We live far enough away from the hospital to qualify for a stay in the Ronald McDonald House which is near the hospital. I'm sure we will stay there at some point, but right now we just wanted to be at home and return to some sort of routine (and eat food that is not prepared at the hospital or a restaurant!)

Lucy is doing well - she has had many of her tubes removed, most painful for her which was probably a chest tube that had been inserted between her ribs and her lungs. She has been fed through her feeding tube for the first time which will be immensely helpful for her digestive system, growth and overall development. The next few days will be all about rest and recovery for her as the doctors decide when she will be ready for her next surgeries. They have told us to expect a long stay in the hospital, but like everything up to this point, cannot tell us how long to expect to be here.

We continue to be amazed at the care and attention of the staff here at the hospital. It definitely takes a special calling to be a labor and delivery nurse, a neonatal pediatrician a surgeon, etc. They all have very different personalities but are so competent and caring we feel very comfortable with Lucy being in their care (in fact, I told Jason that I would probably cry less when we have to leave her if the nurses weren't so nice!)

We will continue to post updates on how Lucy is doing. Thank You for your continued prayers, interest and encouragement through this time.

Surgery Update

Lucy's first surgery is complete and she is doing well and receiving constant care back in the NICU. We just got back from visiting her and she looks great - although she now has even more tubes and monitors connected to her and she is very sleepy from the anesthesia.

The surgery was partially successful. They were able to clamp off the esophagus connection to the trachea and get the anus dilated to a "10." I am not sure what it should be at, but the doctor was happy with that number. However, there was too much space between the two parts of her esophagus so they were unable to connect the two parts. That means that she had to have a feeding tube inserted and that she will have to have a follow-up surgery when she is older to have the two parts connected. The thought is that the two parts will eventually grow closer to together and they will not have to be stretched as much as they would have at this point. We are not sure when that next surgery might be - but it sounds like several weeks away.

Lucy will have multiple ultrasounds over the next few days to determine the plan of action for her hydrocephalus and to look for any other issues that we may not have shown up in-utero.

Thank you for your messages and continued prayers. We will keep you posted on her progress, and even though we cannot speak with each of you individually, we are overwhelmed by your support. As you can imagine, Jason and I are on a bit of a rollercoaster ride of emotions as we deal with new diagnosis and see our little girl dealing with so much when she is so little.