Ailyn had her surgery on January 6th. The first 24 hours were very rough. She had a tough time coming out of anesthesia. And, then pain hit her. Seeing your baby hurting so badly is honestly the hardest thing to ever go through. She would cry and look back and forth at Aaron and I and make sure we were there.
2 hours later we took her up to her room. She was able to get morphine which was the miracle drug for her. We gave it to her every 4 hours until we knew she wasn't in severe pain.
AND, believe it or not the picture above was the very next day! Ailyn is the strongest kid I have ever known. She still has to take Tylenol around the clock for being uncomfortable but overall she is doing so well.
The nurses are teaching us how to use the feeding tube. That part is easy....it's the monitor we worry about. It's different from the hospitals so we will go home tomorrow blind and have to try to remember what home care has taught us.
We have to turn that flower piece 360 degrees twice a day. She doesn't even flinch! Even the doctor who turned it this morning was impressed! We also have to clean the site twice a day. Surprisingly she lays still while we do it....pretty sure it's because it is very sore and she knows it will hurt if she moves ;) In 3 months she will be getting a "mic key button" (not sure if I wrote that right) She will not have the long tube hanging out, instead it will be a little "button" that the feedings will go into.....much easier and doesn't look so big. The stomach has to heal for those 3 months. It will be an outpatient procedure.
We keep a onsie on to keep her from pulling the tube......because she does pull it. As you can see in the picture above, she scratches her whole belly up when we are changing her. The white stuff around the flower piece is a Maalox/Desitin mix that helps the stomach acid that can leak out burn her skin.
The feedings were started on day 2 in the late afternoon. She was starving for a bottle and was asking the whole day. It was so sad to say "no"! First they gave her pedialite and after she tolerated that well, they began a very slow feed of the pediasure. Since she did great with that they started a full 10 hour feed from 10pm- 8am. And, 2 hours at nap. This will be our home schedule.
If all goes well tonight, we will be able to go home tomorrow!! I have to admit, I am very nervous about going home! It is like the NICU, you depend on the nurses to help, then go home and have to do everything on your own. Scary!
We begged the nurse to allow us to take Ailyn in the hallway so Camden could spend some time with her. He misses her so much and has been very worried about her. The first thing he did was hold her and open her sleeper to check out her tube. He was very gentle and whispered "it's going to be OK babydoll" He melts my heart!!I know some of you have had the same questions so I will try to answer them, and please ask away if you have anymore!
How long will she have the tube?- Not sure! The GI doctor is guessing about a year. It took us 7 months to get an evaluation at a feeding clinic, that appointment is not until January 28th. We won't even start the clinic for a few months after that first evaluation!!
How are you going to keep her from pulling it out?- Yeah, good question! The onsie seems to work great! And, we were told kids think of the tube as a third leg after awhile and don't even bother with it. I didn't believe this before surgery, but I do now. I already see that she accepts it being there.
Can she get it wet?- YES! After 2 weeks, she will be able to bathe and swim like a normal child.
Are you worried she will not want to eat real food?- YES! In fact her OT is too. I think with us being aware of that, we will make sure she doesn't get dependent on the tube. I am actually impressed with how much whole milk she is drinking already with getting fed with the tube as much as she is in here. She even ate a small dinner! Since Ailyn loves food, I am guessing that will not be an issue.
THANK YOU TO EVERYONE who has been praying and helping us through this. We are so lucky to have so many wonderful people in our lives! All the Facebook thoughts and prayers have been so great to read! Ailyn is a very lucky little girl to have so many fans. Thank you!! OXOXOXOX
