Well, today has been fairly eventful. I slept over last night and asked for the nurses to help with Gracie in the night so that I could get more than two hours of sleep like last time. I ended up sleeping about 4 hours until she woke up cranky at 3:30a.m. then back to sleep from about 4:30-5:45a.m. and she was awake and cranky again. She threw up a few times in the night but has done really well all day today with no puking, yea!!
She got her wound vac and skin graft site bandages changed. Her chest looks probably the best I have seen so far. Her little leg looks good but it is very sad to see a big huge sore there for nothing. The wound nurse even thought it might look good enough to have this new special bandage put on it instead of the wound vac, she will check with the plastic surgeon on Wednesday and see.
There are a few things that I have to 'pass off' before going home and placing a feeding tube is one of them. I have to say, this experience was the worst one so far. We took Gracie's feeding tube out and then measured a new one. There were two nurses holding her head and hands down and they told me that if I met resistance, to stop and pull it back out. I started to push it down while she was turning completely purple, it seemed like I met resistance and I was freaking out. The nurse took over and agreed that we were meeting resistance and she took it out. Then I had to try again on the other side!! This time, although Gracie was still completely upset, I got it in. Whew!! It was truly a horrible experience. Hopefully it will get better but I don't know if it is ever pleasant placing a feeding tube down your baby's nose!
Speech therapy came by and we are going to try and give Gracie a bottle tomorrow to see how she does with it. Hopefully she will like it but I am betting that she probably won't. We are also going to do her car seat study tomorrow which entails putting her in her car seat for as long as her drive is to go home. They like to see how the babies tolerate this before releasing them from the hospital. I asked them about feeding Gracie during the night and how I was getting anxiety just thinking about it. I asked them if she could be on bolus feeds during the day and continuous feeds at night. They said yes and are going to try that tonight to see how she does. They will feed her continuously for 9 hours from 10-7, take and hour break and then start her bolus feeds back up. Here's hoping to her doing well with that because I seriously cannot get up basically every hour during the night and expect to take care of three other children.
They are still planning on sending us home on Wednesday, keep your fingers crossed!!
14 comments:
How is her heart wound looking so much better if the skin graft didn't take? I'm sure I missed a step, but I was just wondering how all that turned out so well dispite the unsuccessful surgery. We had you all in our thoughts yesterday as we fasted... and I am very glad that she is doing so great and looking at going home this week!
My heart breaks for ALL you are having to do to your precious baby. Keep your strength and keep smiling:) You have a beautiful family!!
It will be such a relief when you can be home with everyone and not feel like you are having to split yourselves to be in two places.
Hopefully the continuous feedings will go well and help to ease the transition.
If they are making you place the tube and doing the car seat test, that means they are serious about sending you all home! Our family is so happy to see you that much closer to being home. Hooray!
Good luck with the feeds. I'm in AZ, and they didn't let me take our ECMO baby home until he could feed from a bottle. He took to it rather well though. We were pleasantly surprised. It seemed like the only thing that came easy to him! Of course, he is my child, and I love to eat!
Oh my gosh - I have anxiety just reading about placing the feeding tube. But I know you, you will have that thing figured out in no time and will have it down to a science. I am so excited that she is so close to going home! Keep up the good work, Gracie (and you too, Michele)!!
Michele,
You are simply amazing. How lucky Gracie is to have such a brave and dedicated momma. She is gorgeous and looking better all the time. Hang in there. We are all out here praying for you.
Mindi
Michele,
I have to say that learning to place the feeding tube was one of the most awful things we had to do. The good side is when you are home you can always call your home health nurse or just take her to Dr. Wilcox to do it (they said so)! That way you only have to do it in case no one else can. I think some kids are easier to get it in, but or experience with Jacob was very similar to your with Gracie, traumatic!
We are so excited for you to bring Gracie home. Driving away from Primary's WITH your baby is such an amazing feeling! Hope all goes smoothly these next few days.
Hugs & Prayers,
Christina
Jacob's momma
My heart goes out to you and all you've already had to go through - but placing the feeding tube sounds awful. I'm so sorry! At least it is getting you one step closer to taking Gracie home! We're so excited for you and praying she will have a wonderful time at home before the next surgery. Keep up the good progress Gracie Girl!
So glad to hear that the chest wound looks better!! It's also fantastic news that you are planning on Wed to go home! Nothing compares to the moment when you walk into your house for the first time with your heart baby. It's a bit overwhelming getting everything situated (meds, formula, feeding pump, 02).. but you'll find your groove.
The NG tube gets SO much easier!! Owen doesn't even flinch when I change his out anymore... and I can get it in without looking. The first few times are always a bit freaky!
So happy that you can do continuous at night and bolus in the day. That's what we do and it's wonderful to get the extra sleep!!!
Good luck with the bottle Gracie!!
Gracie was the focus of our (my) fast (Chris "forgot" it was fast Sunday and had a huge breakfast before I woke up). So, anyway, I did it for us both! She looks so healthy and beautiful. I will keep her in my prayers still and hope that Wed. is the day!
Great news!! I am sure it is scary learning all those things but it just means she is improving. Yeah Gracie!!
Michele, I can't even imagine all that you've been through. It is so exciting to hear that she may be coming home! We will keep you all in our prayers.
Michele, You just moved up on my list of very brave women. Giving shots, putting in feeding tubes, I would freak out over something as small as pricking my babies finger. But as brave as you are, I am sure the complete exhilaration of being able to bring Gracie home is probably crowded by at least a little anxiety. I have a sure faith that you can do it and God will still be there with you! We are all so excited to see you home together. I can be a completely self-absorbed neighbor, sorry about that, but I respond well to phone calls requesting help - so please don't hesitate to call for help with kids, groceries, sleep, sanity, etc.
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