100 Days in the NICU...

Well, we have officially passed the 100 day mark.  Yikes, that is a long time in the NICU!  And yes, we are definitely sick of it and more than ready to bring our baby home.  Here are some updates:

 - Lucy is scheduled for shunt surgery on Thursday.  We don't know too much about the procedure or recovery yet, but will learn more about it this week.  Recently, she has been having trouble regulating her temperature, which doesn't seem to be related to an infection, as all of her lab work came back OK.  The docs are wondering if some of the fluid in her brain is putting pressure on the part of her brain that regulates her body temperature.  In the meantime, we are keeping her bundled up and in a hat so she can stay toasty.

 - She is very slowing being weaned off her high-flow air, down from 5 liters to 3.  The doctors are very encouraged by how well she is doing with this and we are hopeful that her stridor is something that she will grow out of instead of requiring intervention.

 - She still loves her pacifier - after surgery we will be able to see if that love translates into the ability to bottle feed.  It's never too far away from her - as you can tell by this picture:

 - Lucy is getting BIG!  She has outgrown all of her Newborn clothes and now wears 0 - 3 months.  Last night, she weighed in at 10 lbs, 7 oz. Here's a picture of her posing with daddy:

 - She still loves being read to.  We always keep a couple of books by her crib and if she is especially fussy at night, the nurses will read to her - they tell us she calms right down!

 - I have 2 patients to take care of this weekend - Jason just had 4 wisdom teeth removed...Ouch!

Dealing with the Hydro (finally!)

It's been a rough couple of days as we have been reminded of why this blog was originally started.  Lucy had a follow-up ultrasound on Friday to take a look at her brain structure and fluid levels inside her skull.  Her last ultrasound was on June 22, the day after she was born.  The ultrasound definitely showed that her fluid levels had increased since then, leading the doctors and neurological team to recommend a shunt.  However, the atypical part of Lucy's test results are that her head size is not growing at an abnormally fast rate.  The surgeon ordered a follow-up MRI for Monday to get a better look at the brain structure, which showed much of the same.

Typically, in kids with hydrocephalus, their fluid levels increase to the point that it is putting pressure on their brains, causing their heads to grow at a faster rate than the rest of them.  However, that is not the case for Lucy which is a bit of a mystery to the doctors.  It is worrisome, because it looks like her brain may not be growing and developing at a normal rate, causing the extra space to be filled up with fluid.  Unlike her other problems up to this point, this diagnosis has long-term impacts related to her learning and development as she grows up and many of the scared, uncertain and overwhelmed feelings have come flooding back to us as we struggle to understand what to expect long-term.

We do know that in the short-term she will have surgery to have a shunt put in, tentatively scheduled for next week.

In the meantime, she continues to do well overall, charming the nurses and entertaining her dad and I with her adorable facial expressions and alertness - we are still debating which college team will be her favorite!

Baby Steps Forward

Lucy's surgery follow-up showed no leaks - Yay!  This means that the surgical spot has healed, although there is still some healing that has to take place as the esophagus is bulging at the top, no leaking is great news.  Her suction tube, which she has had since birth has been removed and so has her chest tube, which was the main prevention from us being able to hold/interact with her.  She was even able to spend some time in the swing today - so much better than being confined to a crib!  Next steps for Lucy are to slowly start to introduce feeds into her G-Tube in her stomach so that her IV can be removed.  After that, her remaining 3 issues will be addressed:

1.  Hydrocephalus - she is scheduled for a head ultrasound tomorrow (9/21) to take a look at her ventricle size and fluid amount on her brain.

2.  VSD (hole in her heart) - at this point, doctors still do not believe we need to do anything with this at this time, so it will be monitored

3.  Airway Issues - this one is more serious and a bit of a mystery because we are not sure what is causing the problems.  Currently, she is on a high air flow in the hopes that it will keep her airway/lungs open.  This is preventing us from bottle-feeding her because the high air flow would likely cause her to aspirate.  Since the doctors are not sure what is causing the problems and it is very close to her last surgical site, they are very hesitant to do anything about it right now.  We have been told to expect a study in the next "several" weeks to take a look with a scope to see if they can determine what is causing her stridor and her airway to close off.  Once they know what the issue is, we will make a plan of action to correct it.  It could range from something that she will grow out of to something that requires another surgery.

So...we are back to the waiting game (again!), but have been told to expect a minimum of another month in the hospital.  Ugh...that's a long time.

Everybody loves Lucy...

As stated several times before, we are overwhelmed by the outpouring of support we have gotten - from friends, family and strangers alike!  Maybe it's like this for all babies, but I have to say that everybody really loves Lucy!  Her nurse today said Lucy just stole her heart this morning and she spent a good portion of her morning just chatting with Lucy 1:1 and her respiratory therapist yesterday (a young-ish, single guy, by the way), spent part of his morning helping her get a sponge bath and doing her hair!  We have received cards from church groups that we have never met, and bedtime story books from old co-workers and hugs from case workers and nurses that we've only talked with briefly.  My friend's grandmother, who recently had a stroke, remembers Lucy and asks about her, even though talking is still really difficult for her.  Whether it is her story, or her patient little personality, or her quizzical look when she furrows her brow at a new face or simply her great hair, people just can't resist her!  I have a feeling that she will always pull people in and I can't wait to see her personality mature and develop.

Her recovery continues to go slowly.  She is now off the ventilator again and on room air (no extra oxygen), but she has a high flow of air blowing into her, with the thought that it will help keep her airway open.  Her most recent chest x-ray shows much less fluid on her lungs and no extra air pockets, so those are both great signs.  She will have her surgical follow-up tomorrow to determine if there are any leaks at the surgical site on her esophagus.  If not, her chest tube will come out and we'll be able to hold her again!

Thank You for your prayers and encouragement after our last post...we hope to have good news for you all tomorrow!  In the meantime, here's a picture of Lucy with her stylish bow...which is the only girlie thing she gets to wear for a little while.

The long road to recovery

We posted last week that Lucy would have a Contrast Study today to see if there were any leaks at her surgical site. Unfortunately, that wasn't able to happen, as she has had a rough 24 hours. Up until yesterday, she had been doing very well - she continued on low ventilator settings and had minimal output from her chest tube and suction tube. In preparation for her contrast study, she was taken off the ventilator yesterday (Monday) morning. She started on room air, so no oxygen, but gradually was struggling to keep her blood oxygen levels up, so was given more and more oxygen throughout the day and her respiratory rate was elevated, to 80 - 100 breaths per minute (BPM).

Overnight, she continued to have difficulty maintaining oxygen levels and her stridor had returned. In addition, she developed a pocket of air around her chest tube that had all of the doctors puzzled. Somewhere in her little body, everything was not sealed off as it should be, causing her air to escape to places that it shouldn't have. Therefore, she was put back on the ventilator (intubated). When there is a major change with a patient like this, the doctors typically call the parents, so Jason and I were woken up at 3 am by a call from the doctor - not the way I ever want to wake up.

When I visited her at 6 am and when Jason visited at 9 am, she was agitated, but seemed more comfortable than she had been. Unfortunately, all of the drama of the previous night meant that her Contrast Study had to be postponed until next week. When I returned later in the day, she was receiving a blood transfusion, due to decreasing hemoglobin levels. She also had a brady episode similar to what used to happen several weeks ago and her blood oxygen levels would not increase to over 50 (95 to 100 is expected). In this case she was unable to come out of it on her own and had to be "bagged," to deliver air directly into her lungs. Her ventilator was removed and re-inserted at that time, as they determined that something about her breathing tube was in the incorrect place, causing her to not be able to properly breath.

It is pretty apparent to the doctors that she has a leak at her surgical site, causing her secretions to leak into her chest and lungs and restricting her breathing to some level. In addition to the concern that they may have to re-open her up to repair the site, a lung infection is a distinct possibility. So, they started her on 3 different types of antibiotics in the hopes of combating any infections before they onset. Also, it seems apparent that something else is bothering her trachea, leading the stridor and rapid breathing that she has demonstrated over the past several weeks. This will have to be addressed after her esophagus is healed, likely by a surgical team, or ENT specialists.

As you can imagine, it has been a stressful and scary 24 hours for not only Lucy, but for Jason and I. I was very grateful for the kind-hearted nurses who provided Kleenex, a shoulder to cry on and the privacy I needed to pull myself together. We were so focused on getting her to her surgery date, that I don't think we mentally prepared for the aftermath. We were so hopeful that she would have a speedy recovery, but that will not be the case. Above all, we struggle to understand why this sweet, patient baby can't seem to catch a break and remember that doctors do not have all of the answers that we seek. It is heartbreaking to see her look up at us with those trusting eyes and know that we can't do anything to ease her pain - not even hold her. Please keep us in our prayers as we get re-filled with patience, strength and faith.

"...So that your faith might not rest on men's wisdom, but on God's power." - I Corinthians 2

Recovery Update

Lucy's recovery from surgery is going very well. For the first 2 1/2 days, she pretty much slept the days away in a morphine-induced sleep. The goal of her doctors is to keep her as quiet as possible until Tuesday, when we will do a Contrast Study to see if her surgical site is leaking at all. So, she is back on a ventilator, has a chest tube in at her surgical site and a central line into her neck, for easy blood draws and to get her IV fluids. She is on straight IV's (no food) and is still quite puffy from the surgery and all of the fluids that she is getting.

This morning was the first time she really woke up and was alert. Although she can't make any sounds or move very much at the moment, her little eyes are alert and follow us around her bedside and she seemed pretty comfortable while she was awake. It is tough to see her in this state, as she was just beginning to interact and coo when we talked to her before the surgery She's had a number of visitors from the Graduate NICU - nurses who took care of her want to check in on her progress. Her surgical team all came by today to check on her before the weekend and all were very pleased with her progress and the success of the surgery. Although they haven't told us these, I suspect that her gap was one of the longer ones that they have successfully connected at this hospital.

So, until Tuesday, we are planning to keep her quiet and comfortable and not cause anymore trauma to her surgical site. The surgeons said that if she had a major leak in her esophagus, it would already be apparent in her chest tube output, so we do not anticipate that. The outcome of Tuesday will either be that she is healed and can start to have some tubes removed and gradually begin to eat or that the ends have not grown together yet and she will need more time to heal. We are obviously praying for the first outcome.

THANK YOU for your kind words after her surgery. We are so grateful to have the support system that we have.

Successful Surgery!

Lucy's surgery today was a success! Her esophagus and stomach are officially connected and she no longer has a double aortic arch. We could not be happier and more thankful for such a wonderful outcome.

As you know, Jason is in Thailand, so my mom and dad were here to keep me company and wait with me. We headed over to the hospital at 7:45 am, right when the NICU opened, so that we could spend some time with Lucy before they took her to surgery. The transport team came around 8:15 to move Lucy to the Pediatric surgery unit, which I accompanied them to. I talked to the surgeons and nurses for a few minutes and comforted Lucy to the best of my ability while she was in her transport isolette. I held it together fairly well while talking through the possible outcomes until the surgeon said, "...although the likelihood is very small, I have to tell you that a possible outcome is death." While I conceptually knew that is always a risk of surgery, to hear it out loud was awful.

By 9 am, Lucy had been taken to surgery and I was in the waiting area with mom and dad. The surgery took about 4 1/2 hours...possibly the longest 4 1/2 hours of my life. At around 1:30 pm, the surgeon came out with a smile on her face giving us the thumbs up and came over to tell us that it went great - better than she had anticipated. They found a spot in her double aortic arch that did not have any blood flow, so used that as the location to sever it and took care of that first. While her gap was quite long, the surgeon said that the tissue was flexible and stretchy enough to be joined together. She did note that there is a lot of tension on the tissue, so the risk of a leak is quite high.

Lucy was taken to the level I NICU for post-op and I got to visit her for a few minutes around 3 pm. She was just waking up from her anesthesia, but was still very sleepy. The goal for the next few days is to keep her very calm and on a ventilator so that her lungs, trachea and esophagus can recover. She will hopefully be taken of the ventilator in the next few days and re-introduced to food through her feeding tube as well. Overall, her recovery is going very well so far and she seems very peaceful.



THANK YOU for all of your prayers and encouragement. We know that they were heard and that God was blessing the hands of her surgical team today. Lucy is a fighter for sure!

Surgery Day!

Lucy is schedule for surgery tomorrow (Tuesday, 9/4) at 9 am.

Please keep her in your prayers today!

September is Hydrocephalus Awareness Month!

Did you know that September is Hydrocephalus Awareness Month? While this has not been the recent focus of Lucy's blog, or a major concern during the first 2 months of her life, it is still a condition that she has and one that will need to be monitored for life.

Interestingly enough, one of Lucy's new roommates has Hydrocephalus and had a shunt put in shortly after he was born. He is doing great! We are so grateful that Lucy has not had to undergo that surgery yet!

For more information on hydrocephalus and to see stories of other living with the condition, visit http://www.facebook.com/HydroAssoc.

A bump in the Road...

Last Sunday, the doctor on staff suggested that Lucy be taken off of fortified Breast Milk and put on a special weight gain formula in preparation for her upcoming surgery. While that sounds good in theory, the transition did not go well. By Monday afternoon, Lucy was unable to keep any food in her - it was just going right through her to her diapers. She got extremely dehydrated, to the point that she had to have an IV put in (to her head - poor baby!). Her suction tube typically has between 20 and 33 ccs in it by the end of a 12-hour shift, but it was running between 1 and 5 ccs while she was dehydrated. We were initially concerned that she had caught something, but all of her blood work and labs came back fine and it seemed pretty obvious that it was the switch to new food.

So, she was on an IV for 2 days and now has gradually worked her way up to full feeds again - straight breast milk, no fortifiers! During that time, she also developed something called stridor, which is essentially noisy breathing. It sounds like she is wheezing all of the time. So far, her oxygen levels do not seem to be impacted, so doctors have recommended waiting to have it looked at until after her surgery. It is possible it will go away on its own and that it is not related to her recent setback, but the timing of it is curious.

It was extremely frustrating for Jason and I, as we trust the doctors to make the right decisions for Lucy, this was clearly not the right decision and we are still struggling to understand why they wanted to make such a drastic change in the first place, especially when it was ordered by a doctor that was not her regular doctor. We are praying that this bump in the road will not impact her surgery on Tuesday. Final blood work with be drawn and evaluated on Monday to ensure that she is OK for surgery.

As a side note, Jason's mom and his aunt came to visit this week. Although their NICU visits were limited because of her condition this week, they both loved meeting her and we loved having them visit - especially the home cooked meals to come home to at night, and fellowship we shared over a competitive game of Phase 10 (I won, by the way!) Thanks for coming, Grandma and Aunt Geneva!

Jason is on his way to Thailand - he left this morning, so it will be a long 10 days while he is so far away. Please pray for both of us as we deal with the emotions of Lucy's surgery so far apart from each other. Also, pray for baby Lucy, that she may be ready for surgery and that it is successful! We need to bring this baby home!