Today I am having a lot of anxiety. We decided to walk to the other end of the PICU to look at the view. You can see Tampa Bay from the window. Most of the doors are open and you can see the patients. Before we even got to the window you could hear the noise. It sounds like a yard sprinkler head ticking very fast.Jack and I look to the left and there lay a baby probably around a year old or less laying in bed intubated and swollen and attached to a high frequency ventilator. My heart just wanted to hit the floor. His/her parents were sitting on the couch. Knowing the raw emotions they must be having at that time just broke my heart. Parents should never have to worry if their child is going to live or die. There is an older girl across the room from Jacob. She is trached and so is the baby down the hall from him. The girl looks profoundly handicapped. I hear their ventilators making noise all day...I used to be able to tell you what every noise on the ventilator meant.....seems so long ago that I to had a child dependent on those machines....542 days ago to be exact.
Praising God that Jacob is not that sick....probably not even sick enough to be in the PICU. Just having to sleep in a Ronald McDonald House, hearing the vents go off, dealing with Jacob being on oxygen, and fearing that the next time he aspirated could be his last breath has my nerves all over the place. I can't sleep and I want to stress eat all day. That is not working out very well at the moment since I am spending my car payment money just to get by while we are here. Oh and the helicopter landing all the time does not help either.
To push all my sad stories aside I have someone I would like those who read to add to your prayer list. Her name is Brandi. She is actually Christine's cousin. She is a patient at the mother baby hospital here. She is 27 weeks pregnant with a little girl. Her membranes have been ruptured for a few days. To top it off they found out yesterday that SHE HAS 2 BRAIN TUMORS! They are pushing her to deliver the baby so they can operate on her brain. Today she is 27 weeks 4 days. I went and visited with her today and listen to her talk to the neurologist. I showed her pictures of my 28 week babies and told her their story. They "guaranteed" her that the baby would be okay.
I love to believe that everyone has a happy ending, but you know I have a hard time with that these days. She is in denial that the baby may not live, that she may have special needs etc. I feel so bad that she has to be in this situation. She has a 9 year old and a 3 year old at home with her husband. She is 26. They are not sure that the tumor is cancer..and seem pretty optimistic that everything is going to be "okay". I have not talk to this person in years...honestly I really didn't like her....but people change. She appears to be a good person and a good mom. My heart aches for her. Hoping for the best for her.
I really don't like Ronald McDonald Houses. I don't know why they bother me so. I guess it is knowing that nearly every adult here has a child or family member in the hospital...some dying. Pasted a mom on the way in tonight who appears not to have slept in days. She had a bag of clean laundry with NICU pillow covers...the white things that go on the body positions with the colored hearts all over. I have some serious NICU POST TRAUMATIC STRESS going on these days.
I feel like Jacob is back in the NICU right now. Trying to ween of oxygen again. The anticipation of going home and then he desats again. Today they had to up his oxygen to 2 liters again. I miss my other 2 babies! Also the feeding thing...remember when your baby 1st started getting food? They would up it a few cc's at a time until they were on full feeds. That is what Jacob is doing right now. Every 6 hours they add 2 more oz until he gets to 8. The nurses keep him on his back a lot. I am afraid he will vomit when no one is around. So right now we are still trying to ween oxygen. They say his lungs sound good and we are trying to get him back to full feeds. Still don't regret my decision to have his tonsils out..I think it will benefit him in the long run...and for those who judge me...until you have stood in my shoes BACK OFF! WOW that was a lot to try on a cell phone touch screen lol