Wednesday, July 04, 2007
Happy July 4th! Current mood: grumpy
Well, there will be no pictures of Macy Jane in her dress because her daddy forgot to bring it Shame on him! It takes 45 minutes to get home and I am sorry but with gas prices the way they are, it just wasn't worth it to drive all the way home for that. She is fussy today anyways so we are trying to just let her sleep. She is a gassy baby these past few days and I am sure that is what is making her fussy. They started giving her Mylicon on a regular basis.
I guess I didn't update yesterday.....sorry about that. Honestly it slipped my mind. MJ had an awesome nurse yesterday and I stayed in the back with her all day trying to comfort her and also enjoyed talking with her nurse.
I think the last time I updated MJ had had another episode and they stopped her feeds. Well, they consulted a general surgeon to place a G-tube and do a surgery called a Fundoplication. He came by on Monday and at this point he does not feel comfortable doing the surgeries on MJ because of her heart. The resident that works for him told us today that they were contacting the surgeon in California (who we still haven't heard from yet) to see if it was okay from his viewpoint to do the surgeries. She really does need them. They started feeding her Monday and have slowly increased the amount and now she is at her goal rate of 21cc/hour. She is back to getting the amount she was before when she was gaining weight. AMEN!!!
So far she has tolerated it. Her feeding tube is not in her stomach, it is in a position called trans-pyloric.....it is past the sphincter in her stomach so when/if she throws up--it won't be formula/milk because that is impossible. It can be however gastric contents (green bile). So far she has only thrown up mucous. Steve and I walked in this morning after breakfast and the nurse had put ANOTHER tube in her other nostril and that one goes in her stomach and is hooked to suction to decompress her tummy and suck out the mucous so that she doesn't throw up. On top of that she has oxygen on still. Hopefully they can get that off soon, she is only on 1/2 liter. Poor baby, she has a tube in each nostril plus the oxygen prongs in there.
It is getting harder and harder to see her like this. I feel like that we are torturing her and that she is just miserable. I cannot wait to have my happy baby back and it is really starting to upset me that she is having to go through so much. I do not want her to suffer her whole entire life.
God is still with us and has a plan for all of this. I am anxious to get to California so that she can have the surgery. We have a long road ahead of us, but we will make it. It saddens me to think that MJ is 6 weeks old and she has been in the hospital for 4 weeks of those. Pray that we hear from California soon and that the GI issues will be solved soon. The sooner they are, the faster we can get home. HOME. I have been home for a total of 2 hours in the past 2 1/2 weeks. I miss the smell of my house, my bed, my refrigerator, my tub, my shower, and my couch. I just want us to all be able to go home and enjoy being a family. Each day is a gift from God and we aren't guaranteed another day.
Well, that is all for now. I need to get back upstairs. MJ has a male nurse today that I swear is wacko. He is non compassionate and kind of cocky. We ask him questions and he does not answer them. He tries to joke with us....haha not in the mood! Hope everyone is doing well. Happy 4th of July! Enjoy some fireworks for me (particuarly sparklers). Steve and I may try to find a place in the hospital with a view so that we can see the fireworks go off downtown. That's about all of the celebrating that we will get to do. Bye bye for now!