"I can do all this through him who gives me strength"
Yesterday was a busy day for Peyton. He had check-ups, PT, OT, Speech, and started preparing for discharge. The plan right now is for Travis and I to spend the night in the transition room Saturday night and bring him home Sunday or Monday. We will care for Peyton like we are at home and the nurses will monitor in case we have any questions about any of his equipment, supplies, medicine, etc. [...]
I hope we never have to see another ventilator again. It took about 18 hours to wean him off after surgery but he's off and doing well. You can tell he's a little sore when they feed him through the tube so they've been giving him something for pain until it's not so tender anymore. He's now only hooked to an IV and his other normal wires for blood pressure, oxygen and heart monitors. He's at 7lbs 11oz today and 10 weeks 1 day old :-) Peyton has been able to tolerate his feeds all day so at this rate he may be home by next weekend! Let the fun begin :-)
Quick updat before we go to bed. It's been a very long day. Peyton's surgery went well. He's unfortunately still on the ventilator but hopefully by afternoon tomorrow they will be able to wean him off. Starting tomorrow he will be fed small amounts through the gtube until his body gets used to it. I'm going back to the hospital first thing in the morning so I'll update on his progress tomorrow. Thank you all for the thoughts and prayers today. God had his hands on the surgeon and guided him safely though surgery. Goodnight, Blythe
Today Peyton is getting prepared for his gtube surgery. He was recently moved to the back of the NICU with the "feeders and growers," but today he is getting moved back to his original room that's supplied to handle babies on ventilators. At 4am he will be given light sedation and put back on the ventilator :-( The actual surgery will be at 9am and should only take about 45 min. I'll let you all know how he's doing afterwards. As your headed to work say a little prayer for him tomorrow!
For most parents, they hear their baby cry during delivery. As for us and other PWS parents, crying doesn't come until much later. We, along with NICU nurses were excited that Peyton really cried for the first time on Saturday night. We were unfortunately not there to see it but a lot of the nurses were anxious to tell us he cried out so loud they didn't think it was him at first. [...]
The time has come for Peyton to have a Gastrostomy Feeding Tube (gtube) inserted in his belly. His surgery is scheduled for May 29th at 9am and will only take about 30-45 minutes. Peyton will be in the NICU recovering for about a week afterwards and then he'll get to come home!![...]
My surgery yesterday went well. Two small 2.5in incisions; one inside my belly button and one on my hip area. With all the anesthesia I slept for almost 24 hours. We now have to wait 7 days on the biopsy to see if I'm done with surgery. If the biopsy checks out fine then I wont need a hysterectomy in a few weeks. As for Peyton, he's up to 6lbs 13oz now. We found out yesterday he doesn't have a cleft palate. He has a high arched palate which can be fixed down the road with a palate extender.... And braces I spoke with one of Peyton's doctors today, his speech therapist and Occupational therapist and he hasn't made any progress with bottle feeding in almost 2 weeks. His doctors want Travis and I to decide on whether or not to go ahead and proceed with putting in a gtube. Dr Wood is having a pediatric surgeon contact us to answer any questions we may have and if we decide to proceed with the gtube they will schedule it. Recovery would only take about 5-7 days and Peyton would be home! Pray that we make the right decision for Peyton & that my results come back good and no more surgery is needed...
Yesterday was a hot day for a competition but we had a really great turnout for the Pulling for Peyton competition. There was probably around 120-130 people that attended. It was broken up into 3 events; deadlift, sled pull and a 10 min row. All of the athletes did such a great job!! Travis and I want thank Palehorse for hosting this event and each and every one of you for attending and helping make sure everything ran smooth. After the competition we went to the hospital to see Peyton to find out he "may" have a cleft palate. The doctor was examining him yesterday and thinks he may have a small cleft palate at the very back of his mouth. An ears, nose and throat doctor will come to verify this week. If it is in fact a cleft palate this will require surgery to fix. They started looking for this yesterday when he wouldn't take any milk out of a bottle and pocketing what he did take in his jaws. Since and ENT has to verify this we have to wait on them to arrange a time to come to the nicu. This will hopefully be Monday! Tomorrow I have my surgery at 6am. It shouldn't be but about a 30 min surgery and then I'll be in recovery for 2 hours. Please keep Peyton and I both in your prayers tomorrow :-) Blythe fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. Isaiah 41:10
A quick update tonight... Excited to say Peyton drank 4mls of his bottle tonight! It took about 35 mins and he gagged, coughed and made terrible faces but we got him to take 4mls! Now, he just has to take a whole lot more and we can say adiós to the NICU :-) Tomorrow I have pre-op and then we meet with a geneticists that is traveling from Greenwood to meet Peyton. He's a pediatric geneticists from Greenwood Genetics so I believe he will be able to give us lots of information about Peyton's diagnosis of PWS. We'll keep trying to feed him small mls at a time through a bottle and hopefully in a few weeks he'll be able to take a full bottle and come home! In the mean time keep praying for these small victories... Blythe