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!

We have a (tentative) surgery date!

As you know, Lucy's 2nd Gap Study was yesterday. Both Jason and I were able to attend, and her surgeon was there as well. After a LONG walk through the hospital to the Children's radiology area, we finally arrived and put on our X-Ray proof clothing. This time, the procedure was done without contrast, so no dye was involved. The techs and surgeon looked at her suctioning tube location and followed it while they moved it and tried to see how far down it would actually go.

Lucy's gap is basically the same as it was 4 weeks ago - just under 2 cm. So, the doctors do not think that they will gain anything by waiting for her to grow any bigger. They have penciled us in on their schedules for Tuesday, September 4th. While we are super excited for her to be moving forward towards coming home, it is a disappointment that Jason will be out of the country (in Thailand) when she has her surgery. While the date has not been officially confirmed, we have been told to plan for September 4th unless we hear differently.

Please keep little Lucy in your prayers over the next week and a half as her body continues to grow and get stronger and be ready for surgery.

Since her feeding tube was off, we took the opportunity to take some pictures before the procedure...enjoy!

Follow-up Gap Study scheduled for tomorrow (Thursday)

Lucy's Gap Study has been scheduled for tomorrow (Thursday) at 1:30 pm. We are cautiously optimistic and so hopeful that the results will be favorable and show that she is ready to have surgery.

We have so appreciated the support of her doctors and nurses, many who have stopped by this week to wish us well, as they would lover to see her ready for surgery as well.

Thank You in advance for your thoughts and prayers over the next 24 hours as we prepare for the results.

Happy Birthday, Daddy!

It was Jason's 33rd birthday on Monday and Lucy's 2-month birthday on Tuesday! I cannot believe that she is 2 months old already (and that she has been in the hospital for her entire life.) :(

Despite the unusual beginning to her life, she continues to do very well in the NICU. She always has a variety of nurses that come by to visit her and comment on how great her hair is. She is just a few ounces away from being 8 pounds. She has been able to stay off oxygen except for a brief period on Saturday night when her suction tube wasn't getting all of her secretions out and she had some breathing issues. After a quick x-ray, her suction tube was re-positioned and she has been tolerating her secretions much better ever since.

Her G-tube continues to leak occasionally which is highly frustrating, as there does not seem to be a rhyme or reason for when it happens. So, she continues with multiple dressing changes a day and continuous feeds so that her stomach does not expand too quickly.

I would like to give a shout out to three very special babies - Keely and Alma, who were among Lucy's first roommates in the Graduate NICU and had both been there for several months before going home this week. We wish their families well as they adjust to life with their babies at home and know that they are so thankful for their miracle babies who arrived at less than 2 pounds apiece and have both had several surgeries already. We can't wait until it's our turn to take Lucy home. Also, we'd like to welcome Blake David to the world. He was born to one of my very dearest friends and it was so fun to be pregnant at the same time and have babies so close in age. We can't wait for Blake and Lucy's first play date!

We are anxiously anticipating her follow-up Gap Study this week and are hopeful for positive results.