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!

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!