It is hard to blog tonight. I have been feeling down since I left the hospital. It was unusually hard to leave Emma tonight.
The picture above was from yesterday. Emma was a week old and Jason went with us for a visit. It was his first time seeing his sister since the ambulance took her away. He had been begging to see her and his stuffy nose was finally better. I am so glad he was able to see her. It was totally God's timing because this morning the nurse called me to tell me that siblings are no longer allowed to visit due to RSV season. He managed to see her on the last possible day. It was wonderful to have two out of my four together. I can't imagine how wonderful it will be to have all four together.
Yesterday right after we got there they took the CPAP off and put on the Canula instead. It is much more comfortable and a lower level of care than the CPAP. It means she is breathing a little bit better.
This morning when I called to check on Emma they told me that she had started feeding with a bottle. Her first couple feedings went well and she sucked, but her last couple feedings she hasn't wanted to wake up to eat. One of those feedings was me trying to feed her. I think I am realizing how much work we have ahead of ourselves before she can come home.
Today she had an Echo to see if she still has the Pulmonary Retention (I think that is what they called it.) Don't have the results yet. She also had a neurologist come by and check her out. He said he wanted her to have a MRI next week. I believe checking for damage in the brain. I am somewhat worried about brain damage because of how her eyes look when she opens them. I am praying and hoping, though, that it is just all the medications or being so sick that has them not focusing well.
Her bilirubin was 21 Thursday morning. This morning it was 16. Normal is around 8. It was explained to me that when it is as high as 21, it can affect the brain so it is really important for it to come down. She was laying on a photo-therapy light and well as having the one on top for all of yesterday and today and her numbers are headed in the right direction.
Just before I left for the day today, she pulled out the feeding tube that was going through her mouth down her throat. She never did like having it there. I was told the night nurse would put a feeding tube down her nose instead.
I love her so much and just want to bring her home safe and healthy. I was blessed to be able to hold her for two hours today. She snuggles right into me and smiles in her sleep when I hold her.
Praise the Lord:
Please pray:
That there is no brain damage
That her eyes are okay
That her bilirubin will continue to come down
That we can increase the amount of breast milk being fed (I just called her nurse and she is up to 9 mls; up from 3 yesterday)
That she will wake up for her feedings and do well sucking from the bottle
That eating would go well so I can start breastfeeding her soon
That her breathing will continue to go well and that she would be able to come off of all support soon
That Isaac's night-time cough will go away so he can see his daughter (he hasn't seen her since the day she was born).
That Jason's and Joel's health would continue to get better
That Jonny and I will continue to be healthy and not get sick
For physical and emotional strength for me as I go back and forth to the hospital and try to heal from having a baby.
This picture was taken Saturday when Isaac got to see and hold his daughter for the first time since she was born over a week earlier. Actually, it was his first time holding her.
Today was Emma's 13th day in the hospital and my 13th trip from Fallbrook to San Diego (Rady) Children's Hospital. It was 13 days ago now that I had her. And I am 13,000 times tired and ready to have my little girl at home. Our wonderful nurse yesterday was the first person that I felt was really encouraging. God knows when we need (and by need I mean "have to have!") encouragement.
Yesterday was a big day for Emma. She had an MRI in the morning. We got the results really quickly. The neurologist said the MRI didn't show any brain damage due to lack of oxygen. It also didn't show any tubers (what Joel has), so we can pretty much rule out her having TSC. Praise the Lord! Just to avoid any confusion, we did not suspect that she had it, but knowing that she doesn't have it is great. The MRI did show some fluid in part of her brain, but that could be due to the edema that she had for several days after birth and due to normal birth trauma. We are just going to have to watch it to make sure it goes away. Tomorrow she is scheduled for another 24 hour repeat EEG because the first one showed decreased activity. They are thinking this was probably due to the swelling in her body, but want to make sure everything looks normal now.
Yesterday her antibiotic ended. Her labs are looking good now so they felt safe ending it. That meant that her Venus line into her belly button was able to come out which makes it much easier to hold her. :)
For the last few days her breathing has been really fast, which isn't good. It's going to have to slow before they can start weaning her off of the Canula. She's going to have to be off of the Canula for 2-3 days before we can bring her home. So we're still looking at having her there probably another week. I still have high hopes that she'll be home in time for Christmas, though.
The other issue that has to resolve before we can bring her home is eating. She is doing pretty good in this department with the exception of her breathing rate. When she is breathing so fast she can't take a bottle because she could breath in the fluid and get pneumonia, which could kill her. She has to be taking all feedings by bottle before I can try breast feeding her and before she can come home. The good news on this front is that she is very close to her goal amount to eat! She is also waking up hungry at her feeding times. A good thing.
Please pray specifically for her breathing to slow and her oxygen rate to be good. These are our main hurdles to taking her home. Thank you for taking the time to care in this busy season.
Emma's newest thing is holding her pacifier. :) It's so cute!
Praise the Lord:
This last picture is one of my favorites. I love her hair. It is amazing to me that hair can look feminine. My boys hair was completely different.