I spoke to her Orthopedic doctor regarding her scoliosis, and hip/leg/foot issues. The great news is as soon as she is discharged from the hospital, he will start casting her foot. The technique is called Ponseti. He told me to look up all the details of the procedure which I have done. I'm so excited for her to start treatments because, like he said, it will totally fix the issue! WHOO HOO! He also said the infant scoliosis almost always goes away!!
She is also getting a pedi crib which she needs. Now we just need to work on her bottle feeding. The doctor will speak with OT tomorrow regarding a repeat swallow function, increasing her bottles, and giving her longer time with the bottle. Right now, she only has 15 minutes to finish her bottle and whatever is left has to be tubed. I do not agree with this because as great as Madi was with her bottle, sometimes it took her 30 minutes to finish.
The only concerning news is regarding the bump on her head. All this time I've been told not to worry about the bump and it will go away. They also have always told me it was not caused by an IV. Well, the bump isn't going away and it actually looks to be bigger. They did another head ultrasound to make sure it was not an issue with her skull; luckily it isn't. Dr. Bloss (wonderful surgeon) took a look and said it may be a "fat" tumor caused from scare tissue from a head IV. He would like to see her when she is out of the hospital to fix it. The fix would be cutting her head open and it should pop out. The issue I have with this situation is this, I've always asked about it, I've always been told its "no big deal" and I've always been promised it had nothing to do with an IV. This is strike TWO! One with her vocal cord being damaged by them and now this. I understand both procedures had to be done to save her life but I also know that they could have been more careful.
Come HOME SOON Gracie so we don't have to go through this stuff anymore my love!
Brody is doing great! He pooped by himself for the first time in 10 weeks! This is a HUGE accomplishment and I'm so proud of him. It is a good thing these babies aren't older because I would be in trouble with buying them rewards for their accomplishments :) Since he is pooping, they have increased his feeds. We hope to have him on full feeds by the end of the weekend so we can get the PIC line out. Once the PIC line is out, his nutrition will be at the right stage and we can aggressively start getting him off the vent! By the way, he is requiring the least amount of oxygen he as ever needed in his life, an awesome 27%! You go my BOY! The biggest change with his little personality is..... he is a big baby and SPOILED by all his primary nurses. He now has mastered a tantrum. The nurses "fix" it by patting his butt until he goes to sleep.... I'm in big trouble! :) I need to start growing that third arm. Brody had his ROP follow up and the BEST news is it is regressing and they will check him in ONE MONTH! This is WONDERFUL news!!!
Madilynn had her ROP exam this week. She is now stage one all over in both eyes. This is great because it is getting better. Early Childhood Intervention came out to the house on Wednesday. She does qualify for services; I'm really happy about it. We will start off having a therapist come out once a month and increase it as she matures. She is 3 months old but really she shouldn't even be born yet so they think she is on track for a newborn but can strengthen some areas. In other Madi news, I had to take her to get her blood drawn on Monday. Lets just say even though its only a heal stick, I hate it! It is just horrible. I'm not sure how far I'm going to get having her ears pierced if I can't handle a heal stick. Ricky already said he won't take her so we will need to argue about that one :) We use to argue who was going to drive, now it will be who will take the babies to get stabbed. (Yes, its dramatic to say stabbed but it is a dramatic experience). She is becoming more alert and 100% knows who her daddy is. Her eyes get really big when he comes home from work. Its really awesome. Madi gives a big SMACK when she is finished with her bottle which cracks us up. :o)
I'm getting nervous about our Thanksgiving deadline. I really need all the babies home by then but I realize that we have a lot to accomplish in a very short time. Brody for one has to be extubated and on cannula as well as bottle feeding. I'm confident Gracie will be home by then but I'm not sure about my boy. It has been a long road and I'm so thankful where we are now. I can't wait to have us all together and mainly have the babies meet each other again.
Thank you all for the prayers. I always say prayers are the Miracle Grow for the babies for good reason, It is so TRUE. GROW BABIES GROW!
Krista
