Cheering for Team USA from the NICU

As Jason prepares to go across the pond in a few hours and work for/support/watch the USA Wrestling Team at the London Olympics, Lucy and I are cheering for Team USA from the NICU. Thanks to 2-year old Julia for sharing some of the clothes she outgrew with Lucy - one of them being this USA sleeper. While I am not convinced Lucy is actually cheering for Team USA in this photo (it could have been a reaction to the camera flash), the picture was too cute not to post!

Lucy's had a great couple of days. Her brady episodes have decreased and she continues to gain weight. Last night, she was up to 6 lbs, 7 1/2 oz and she is finally showing an upwards trend on her growth chart. She does, however, HATE baths. Now, bathing in the NICU is a production in itself, because of all the cords that cannot be disconnected, but even with lots of fresh towels, a warmer and Jason and I to bath her, she cried pretty much the whole time we bathed her on Saturday! After not being able to cry when she was on a ventilator, hearing her pitiful little wail is still a welcome sound to our ears, though!

While last week's news was a big disappointment, we have found a huge advocate in our pediatrician, who actually did her residency in Minnesota! She has been a great sounding board for me to talk to about our options and Lucy's long-term outcomes. We are fortunate that God chose her to be Lucy's primary pediatrician during this time. I think some of the nurses felt almost as bad as we did that she would not be able to have surgery - we received many words of encouragement from the many nurses that have taken care of her and our nurse today told me that everyone loves Lucy and that she is somewhat of an unofficial favorite on the floor (she's pretty much hard to resist!)

An especially hug THANK YOU to everyone for the outpouring of support after we found out Lucy cannot have surgery this week. We can't wait to introduce her to all of the wonderful people who have prayed for, supported her and encouraged us along this journey.

Back to the Waiting Game

Lucy's Gap Study results were reviewed today and, unfortunately, they were not what we were hoping for. We are back to the waiting game - waiting for her to grow, waiting for the gap between the esophagus and stomach to get bigger and generally driving ourselves crazy in the NICU for at least another 2 months.

Jason was able to go to Lucy's study with her - they took a field trip to Pediatric Radiology where she had dye put into her feeding tube to her stomach and then did an X-Ray to look at where her esophagus pouch ends and where her stomach begins. There is no magic gap for the surgery to be OK to try, but at a certain length, the surgeons consider it a "large gap" and too large to perform surgery on. From what we had read, anything over 2 cm was considered a large gap. In Lucy's case, her gap is currently 1.9 cm, or equal to 3 of her vertebrae. We do not exactly know how long it was when she was born, since it was originally attached to her trachea and there was no gap study done before hand.

The surgeon consulted with her colleagues in the department and they agreed that with the gap being that long and her VSD (Ventricular Septal Defect, a.k.a. hole in her heart), surgery at this point would be too risky. She said that the soonest she would re-evaluate would be in a month.

Bottom line, Lucy will be in the NICU for at least another 2 months, as she prepares for surgery and then recovers afterwards. While we are confident in the surgeons' opinions on Lucy's case, we cannot help but be aware of the other impacts to another month of waiting:

- Lucy losing her interest in her pacifier because of the tube that is constantly in her month, which will surely increase her recovery time as she relearns to suck and swallow

- Lucy continuing to cough and gag and hold her breath until she is literally blue in the face because she is overwhelmed with the secretions that her body cannot handle - quite possibly setting her up for a serious gag reflex, oral aversion and acid reflux when she is older

- Me spending 3 1/2 hours on the road driving to and from the hospital everyday

- Me taking a pay cut in order to work PT so that someone can be with Lucy every day

- Jason balancing the bulk of the home duties, working from both his office and remotely and dealing with travel and being away from Lucy and I

Needless to say, today was a pretty big blow to our positive outlooks and patience! So, while Jason graciously made fajitas and tried to cheer me up, I cried into my dinner plate until I felt better and then we both remembered to be thankful for the beautiful gift that is our little girl. I think the picture frame that we received from one of my co-workers sums up our thoughts tonight, "It is all worthwhile to see our baby smile..."

Gap Study scheduled for tomorrow!

We have been told that Lucy's Gap Study has been scheduled for tomorrow (Wednesday). This will determine if her esophagus and stomach are close enough together to try surgery again to connect them.

Please pray for our little girl, that she handles the procedure well and that she is ready for surgery. Also, for the radiology team and surgeons as they decipher the results and make the best decision for Lucy.

One Month Old!

Yesterday, Lucy was one month old! I cannot believe that she has been here for over a month already (and that we have dealt with a month in the NICU already!). Yesterday marked another milestone - 6 pounds! She was actually 6 lbs, 1 oz when she was weighed last night and we couldn't be prouder.

The surgeon came by on Friday afternoon and said that they will do a gap study this coming week to see if her esophagus and stomach are close enough together to try surgery again. If they are, they will hope to schedule surgery for the week of July 30. While we are REALLY trying not to get our hopes up, we are REALLY praying that God's timing will allow for her to be ready for surgery so that we can start the next phase of her healing.

Overall, she has had a pretty good week - she continues to have Brady episodes that drop her heart rate and blood oxygen levels, but she is able to pull herself out of them fairly quickly and the doctors and nurses seems to agree that they are related to her suctioning tube position. Hopefully, after her surgery, these will stop.

Jason was in Fargo all week and I went back to work, so it was a bit of an adjustment for both of us. I was lucky enough to have my mom visit for most of the week and we stayed at the Ronald McDonald house so that we could be close to the hospital.



We continue to be blessed by many different people and organizations - even something as small as a Teddy Bear sent to the NICU is a fun distraction from the monotony of the sterile hospital environment. Thank You to the many volunteers that provide food and lodging at the Ronald McDonald House and to United Airlines for providing Oliver D. World to the many babies and kids who are not feeling well.

We will keep you updated on the results of Lucy's gap study and her upcoming surgery. Thank You for your continued thoughts, encouragement and prayers!

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!