Home Sweet Home

It is hard to believe but after 69 days we finally have our entire family at home. Reece Gregory Nykamp was released from the hospital at 5:30pm today. We are extremely thankful to each and everyone of our friends and family that have been praying for us and supporting us in so many ways. I do not know how we would have gotten through this adventure without each and everyone of you. But most important I thank God for his faithfulness.

YEAH GOD!!!

The HIDA scan results were "normal". His bili-levels went down a little, and we're in the process of coming home!!!! It may be tomorrow because of all of the paperwork, but that's okay with me! I'm just very thankful for God's healing in my little boy's life! YEAH GOD! -Sue

Test time changed

Did you know that a child needs to be on phenabarbytol (I sound spelled that one - good ole' First Grade training) for 5 days before a HIDA scan? Well, today would have been day 3. So, the test has been post-poned until Monday morning at 8:30 AM. I'd like you to know though - God IS answering prayers - Reece's bili-levels have gone done a little. YEAH! Not that it makes that much difference to the entire plan of action, but it means a lot to us as parents. He has lost weight the last two nights. I guess with all of the liver talk I totally forgot to pray for weight gain again. I can see God's love in Reece's eyes, in his hand grip (including the thumb tucked in which he loves to do), in his coo, in his kicks, in his cries, in his squirts, in his smiles and especially in his cuddles. It's amazing to think the God who plays with the dancing fireflies by night is the same God who cuddles our little Reece and rocks him to sleep. Thanks for your prayers -Sue

Continued monitoring

No news today. He's still awaiting his HIDA scan tomorrow afternoon. He'll also have some more routine blood work done as well. Thanks for your continued prayers. -Sue

Prayers Needed

We got a call late morning telling us the GI specialists were quite concerned. Reece's jaundice levels had gone up again. They looked at all of the poopy diapers collected and at the test results from the early morning. They had decided to do a test to rule out cystic fibrosis. That test was normal. So, they talked with the surgeons and debated to do a HIDA test or go in for a liver biopsy. The conclusion was to do a liver HIDA test first and do the biopsy only if needed. The HIDA test is where they insert some kind of fluid into Reece and watch it be dispersed throughout his liver and gall bladder. There is a drug he's taking now to prepare him for this test. The test will be on Friday and the data will be reviewed on Monday by the GI doctors and surgical doctors. We wait and we pray and we cuddle the one we love!
We're thankful they are checking him closely while he's up here, but we are hoping the jaundice levels go down on their own and things are back to normal before any more problems or surgeries arise. Please pray hard for this. He's acting so wonderfully whole and we are enjoying the time we're spending with him. It's so hard to know there's more to his story than what he's showing us. Thanks for your love. - Sue

Send in the specialists

As a mom, I was hoping to say "we're coming home" in this blog, BUT we are not coming home yet. Reece continues to be a rock star with eating. He's getting anywhere from 100 - 120 mls. (that's 4 ounces!) However, his direct jaundice levels have increased, and his stools are loose. There is some good news. Last night he finally did gain weight (after 3 nights being the same weight). The neonatologists decided to seek consult from the GI specialists in order to see what they thought of his situation. A GI nurse practitioner came yesterday and saw Reece. She gave a small report and told us the GI doctor would see him today. That Dr. did come early this afternoon to see Reece. He ordered that his stools be saved until his return tomorrow and he ordered some more lab work to be done tomorrow. I guess that means he's probably not going home tomorrow yet. We continue to hope he'll gain weight again tonight. If that is still a concern, they are considering adding stuff to his milk. They also put Reece on meds. to help with the jaundice.
Sorry if this report rambles a little. I'm hopeful he'll have great test results and be able to go home soon. Please keep Reece in your prayers. And, while you're at it, please say an extra prayer for me. I'm a little disappointed it's taking so long for his system to work things out. I just want my baby home. That may sound a little selfish, but when life in the NICU takes the rollercoast down, it's an emotional struggle to go up!

full feeds?

Can't believe it's been so long since last I wrote, sorry! I guess the excitement of moving his feeding pace up and the ability to get some breastfeeding in made me forget. Yes, our little guy has been progressing well. Today they increased his feedings rate again. Their goal is to get his IV out by tomorrow! I know he's had a very loose diaper though already. So, I'm not sure it's all going to happen. BUT, it's possible!
Reece is still jaundice as I told you on Monday. They did all of the tests they thought were necessary and found that his liver is functioning very well. His blood work shows it's just what they think it is and the jaundice will decrease in time...possibly 3-4 weeks from full feedings. We're not sure if this means a longer stay or if they send him home already?
I don't know if you can tell from reading this, but the full feedings idea has gotten us very excited and hopeful that they may talk about going home sooner than later. Haven't heard a doctor tell us the word home yet, but we're hoping it's coming.
Thanks for praying for his feedings to go well. 100mls is his full feed - amazing! He'll be given that by tonight! REALLY Amazing! I'll try to let you know how it goes tomorrow. -Sue