On Monday one of the docs suggested they give a drug (Octreotide) that would slow down the drainage she has coming from her chest into her jp drain but the surgeon put a stop to that thought. He said there is no real evidence in all the studies done on it that proves its works and the side effects aren't worth that risk. He said it is something that we can wait out and it eventually clears up on its own we just have to have patience. He must not know my master plan of being home by Christmas--lol. I actually agree with that decision even though it does mean waiting longer--but that would be the best Christmas present EVER!
She had to get another IV (grrr) to give her Albumin through. Evidently when they gave it to her the other day through her PICC line that was a no-no because it is a blood product and can clot up in the line causing more issues.
She is being weaned off her morphine and versed in increments of 5 every day in rotation. 1 med one day and the other med the next. I hope this is slow enough to not experience the whole withdrawal thing again!
Tuesday they lowered her vent settings and she really started breathing hard. Chest X-ray showed that her fluid had built up again in her chest and her jp drain was not draining right. Again, this fluid is setting us back. Go away! Please!!!?! But it was a pretty uneventful day, which we have learned to love.
Wednesday the skin team looked at the back of her head where she has a head sore. We had felt it a few days ago and asked the nurse about it but she kind of blew it off in my opinion. At the time she was laying on her back so we did not really see it we had just felt it when we were putting her headband on. Its actually a scab mixed with hair about nickel size. It looks bad to me. They say it has probably been there since she was on ECMO and couldn't be turned much. Hopefully it heals good and soon so she can lay on her back again.
The jp drain was being stubborn again today so at some points it was not draining until they turned her. So they did not wean on the vent but did on meds. Wednesday was also the last day for our dr and our neonatologist. The docs switch every month and the neonatologists every 2 weeks. I really do not like that! We REALLY liked this dr! She was there the morning Sunni was born and she has been a blessing through this. Her name is Joy Tenpenny and she is amazing. She spends a lot of time with you and tells you everything you want and need to know in terms that you can understand. We love her! So we are really sad that she will be gone a whole month.
Thursday is the day I flew in with Ryder. She had a really good day today and looked AWESOME! I was so happy to see her so alert from coming off the meds. I just thought she was alert before. She got her red sutures taken out that you have probably seen in pictures. She got a new, smaller tube to suck her tummy stuff out called an og tube because the repogle was draining very little. AND she had like 5 dirty diapers! So I guess with all this new stuff today they have decided that she *might* get to eat for the first time today!
I am writing this at 9am on Friday and we have yet to go to the hospital so I do not know that it will happen for sure but I will update tonight and let you know! I am very excited about this. I am also hesitant, too, of course. I pray that her little tummy and bowels wake up and know what they are doing. They have had a rough start in life. From being scrunched in a tiny space, moved around to a bigger space, and not fed for 27 days. It is scary/exciting. I hope this is one forward step. The lactation consultant told me breast milk is "liquid gold" and will get her home faster. We shall see lady!! And if not I am going to go track her down :)
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| The incision minus the red retention sutures |
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| Looks so Good! |
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| Optimus & Bumblebee on Halloween! |
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| Happy Halloween! |
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| Exhausted! |
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| Pretty Eyes :) |
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| Daddy & Sunni |
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| Not too happy about her new IV. I am sure you can tell what is on her mind -lol |
So Sunni is making little baby steps forward. I am very happy and proud of my fighter! If that darn fluid in her chest would GO AWAY we would be doing so much better! So prayers for that would be greatly appreciated!
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