Back from CHOP ~ Trusting in God

Hi all! I have to be quick. Sorry it took a while for me to write this update. We arrived at CHOP at 6:30 a.m. on Monday June 22nd. The I.V. team had trouble with Alexandria's i.v. placement as usual. No matter how much I try to prepare myself for that it is never easy. The first person tried 2 times without success. The second person got it in on the first try. It took a looong time. Alex screamed and cried the whole time. It is painful to watch your child restrained and crying while pain is being infliced upon her...your baby looking at you for help and you having to forgo your instinct to grab her and hold her knowing that what is happening eventhough painful for a little while is best for your child. Once the i.v. was in and the sedative was given Steve and I laughed - Alex looked happy and out of it like she had a bit too much to drink. She was looking at us like 'hey there, this is kind of nice...'. The upper endoscopy procedure took only about 7 minutes and the NG placement a minute or two. Alex had no recolection of it. They actually give medicine to help kids forget the procedure along with the sedative which I thought was kind of neat. Alex was handed off to us awake but sleepy with her feeding tube in place. The tube did not stay in place for very long, Alex pulled it out twice in about 15 minutes...We decided to leave it out till she was about to get her first feed. We waited for a few hours and then were ushered to our room, a huge private room with a sofa bed and a full bath. Steve asked how we pull out the sofa bed and was told it is not a pull out...So...Steve slept on cushions from the sofa bed with our suitcase serving as a pillow and I slept on the sofa bed - the first night I slept with Alex and the second night I had the sofa bed all to myself while Alex slept in her carseat. Yes, we stayed two nights and 3 days...instead of the 1 night like we anticipated. We came home from the hospital on Wednesday evening. Let me back up a bit. Alex thought she was on vacation when we arrived to our room. She loved all the people and her new crib. It didn't take long for her to be suspicous of all the nice people as they smiled and then poked and proded her. She liked walking around in the hallway looking at everyone and all the art work on the walls. She cryied when we were about to enter our room and got hysterical when we went anywhere near the crib - that's where all the bad stuff happened. This vacation was not so great after all. Steve and I took a 2 hour class on the NG tube on Tuesday and on Wednesday we took an hour long class on the feeding pump. Our room was a revolving door - doctors coming in, RN's coming in, etc. We had to put Alexandria's NG tube in on Monday night. And then again on Wednesday. I can't even tell you how hard and stressful it is to do this to your child. It takes two people to do it - one to hold the child down and the other to insert the tube. We have to make sure the tube placement is correct by checking PH levels and then flush the tube and tape it to her clothing. We also have to put a no-no (sort of like a soft cast) on her arm to prevent her from reaching the tube and taking it out. We also had to put mittens on her hands and tape them down so she does not remove the tube. It is not fun. So when we came home on Wednesday night (exhausted from sleeping for a hour here and there over the past 2 nights and emotionally drained) we came home to a CHOP Home Care RN who hooked up our feeding pump, gave us all the supplies and helped us get set up. Once she left Alex pulled her tube out...Putting it back in on our own for the first time was soooo hard and it took two tries. Once we got that done and put Alex in her crib our little girl managed to wrap her neck and stomach in the tube from the pump. At that point Steve was really upset as was I and we decided to call the 1-800 number for help. The RN we talked to gave us some good tips. Basically, we had to have Alex sleep in her car seat to prevent her from rolling around and wrapping herself up in the tube. We decided to not put a mitten on her opposing hand because without her thumb she is lost. Alex pulled her feeding tube out yesterday morning while still in her carseat. She pulled out the tube again this morning and this time before her full 12 hour feed was finished. We are going to have to put a mitten on her opposing hand once she is asleep and the thumb is not as important. I also placed a call to the G.I. doc to see if they can change the feeding order a bit. I would like them to up the ml per hour and decrease the amount of hours per night. This way the feeds will be done quicker and Alex will still get the same amount of formula. Feeding her at night from 8:00 p.m. to 8:00 a.m. messes with her breakfast...As a matter of fact it has been a challenge feeding Alex during the day...She does want to nurse more which is great! Please pray for my breast milk supply to increase like crazy! Another consern is that and if Alex wakes up early and manages to pulls her tube out despite of the no-no and a mitten of each hand) she won't get a full feed at night. We are a trying to not due day time feeds if possible. Originally they wanted us to do 4 hour long feeds druing the day and a 12 hour feed at night...If we went with that plan that is all we would be doing...not to mention that Alex's belly would be always full from NG feeds and she would not want to eat on her own which I did not thing was good. Steve asked them what could be done to not do day time feeds and so they increased the calorie intake from 24 to 27. The point is for Alex to get 50% of her calorie intake through the NG tube and see how she does with that. We may have to do day time feeds during nap times if Alex is not eating 50% of her calorie intake on her own during the day. If we have to go that route and Alex keeps pulling her tube out this will become an issue...Basically, Alex will dictate how we do this and we need to be flexable. It's been busy, stressful and at times overwhelming but from one day to the next we are adjusting little by little. Please pray for wisdom, discernment, weight gain and healing for Alex, that Alex would not pull out her tube, that Alex would still eat her solid food during the day, pray for strength and energy for Steve and I. Thank you so much! Oh, and by the way, the upper endoscopy test is negative! Thank the Lord! Have a good one!