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.

Echo results

Lucy has had a busy week! On Tuesday, one of the surgeons came to look at her G-tube, which continues to be troublesome and leaks occasionally. She had some tissue building up around it, so that has been cleaned up and she is on continuous feeds for a couple of days in the hopes that avoiding filling her tummy with large amounts at a time will help the site heal. In the meantime, she loves spending time in her Boppy and looking at her mobile (you can see the turtle from her mobile in the top left of the picture below. She has graduated to a larger Blood Pressure cuff and size 1 diapers!


She also had an Echo test on Tuesday to look at the holes in her heart - ASD and VSD. It looks like her ASD has pretty much closed on its own and is no longer considered a problem and that her VSD is small enough that there is no action needed at this point. We will plan a follow-up in 6 months to re-look at it. Great news for us as it is one less thing we have to be concerned about.

Since she is officially off oxygen, her sunctioning tube has been moved from her mouth to her nose, like it was a few weeks ago. She's not sure that she likes it there yet, but it has given her a break from always having something in her mouth and she is less likely to yank it out since it is off to the side a little bit. It has also given her a renewed interest in her pacifier, which is great, since she will need those skills when she is ready to start eating on her own after surgery. I finally admitted, now that I can see more of her face, that she looks like her daddy...alot!



Jason is back home and can't believe how big our little girl is. Interesting side note, Jason and I gave one of the Olympic bronze medalists a ride from the airport once!

G-tube woes, visitors and growing up

Lucy is over 7 weeks old and weighed 7lbs, 8 oz tonight! She is definitely growing up and has had a few busy days. Last week, we met a developmental therapist who showed us some fun exercises to do with Lucy to make sure that she keeps up with her developmental while she is in the hospital. For premature babies, their development is still measured based on their expected due date, she she is measured as if she were between 3 and 4 weeks old. She is doing great with hand coordination, eye contact and moving her arms and legs.

She was briefly off of oxygen before coming up to the Graduate NICU, but had been back on a low flow until this weekend. She is now oxygen free and doing great with it!

Her G-tube (the feeding tube that goes directly into her stomach) has been giving us a lot of problems, lately. It has been leaking after nearly every feeding - losing precious calories and soaking all of her clothes and blankets. On Saturday, the nurse practitioner put in a new top, in the hopes that the balloon would be work better and we tried a new, foam dressing to build it up a little and lessen the gap. However, it continues to have a small leak in it which so far, the staff has been unable to figure out.

Lucy has also had lots of visitors to keep mama company while dad is in London for the Olympics. Sara and Lindsay, who were our usherettes at our wedding came to visit this weekend with Lindsay's adorable little boy, Aaron. Since they are both nurses, they were both very comfortable around the NICU and understand the medical terms and recognize the products that are used in Lucy's NICU. Today, my friend Ann came to visit after work and was kind enough to bring a gift bag for me and keep me company while I was trying to comfort a very irritable baby who was only happy if I stood to hold her. We love having visitors and I know that they love being able to meet this little girl in person, who they have praying for over such a long time. I am typically a very planful, decisive person. However over the past few months, I have found that I am sometimes too overwhelmed to be able to make decisions or plan the way that I would like. I so appreciate these 3 girls telling me that they were coming to visit and making it happen without needing a lot from me.

We have heard through the grapevine that another Gap study will be scheduled for next week (how can it have been 4 weeks already?!?!) and that the surgeon would like to attend so she can see what is going on instead of just reviewing the results. Prayers appreciated that the extra 4 weeks gave Lucy what she needed in order to tolerate surgery and lessen the gap.

And most exciting for this week - Jason comes home tomorrow! I think 2 weeks was a few too many days for him to be away from me and I can't wait to have him back for the love and support he provide us with...I have turned often to this verse as I work to keep up this schedule day in and day out:

"But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint."

- Isaiah 40:31

Gratitude

After a our recent disappointment related to Lucy's surgery dates, I have found such wonderful comfort in friends, families, nurses and strangers in the past 2 weeks. I find myself thinking back to that day in the doctor's office when we were asked if we wanted to terminate the pregnancy and I cannot imagine never meeting this little baby who is Lucy!

As I talk with more moms in the NICU and at the Ronald McDonald House, I have met many women who were faced with that same decision - some who have perfectly healthy (albeit premature) babies and others who do not. Just like many other life situations that draw people together when they would never had met otherwise, there is an instant sense of community between the parents - especially the moms - that are in the NICU with us. I was especially impacted by a VERY young couple who have a baby born with hydrocephalus, just like Lucy. She had a shunt put in shortly after birth and has experienced some major issues with infection and other birth defects, including Spina Bifida. But, she is doing great now and they are ready to take her home this week, at just over 2 months of age. I know that they will have many difficult days over the life of their baby.

Lucy continues to thrive in the NICU - she is up to 73 ml of food, with the additional 27 calories of formula to fortify and help her gain weight. As of tonight, she was up to 7 lbs, 2 1/2 oz! She is starting to develop chub on her arms and legs and is staying awake for longer periods of time. Jason won't recognize her when he gets back from London next week! She is also hanging out in her Boppy every once in a while (thanks, Nate, Emily and Nolan!) instead of just laying in bed or being held. The doctor told me today that we can take her off oxygen for short periods of time while she is awake and alert and we are interacting with her. Her hair is growing like crazy! She loves looking around the room and at her brightly colored books and has some pretty cute facial expressions - my favorite is when she is very obviously awake in her crib and looking around and one of us come up to her and say hello and she slams her little eyes closed - like she was sleeping the whole time. :)

We have been blessed to have a variety of visitors, most recently my sister, Melisa, who took the photo at the top of this blog. Also, thanks to my sister, Jenny, for making the adorable headband Lucy is wearing. We are looking forward to some of my friends from Minnesota and some of Jason's family coming in the next few weeks. With Jason's travel schedule, it has been so nice for me to have out-of-town visitors to keep me company.

As always, thanks for the support - we are overwhelmed with gratitude towards all of you!