Made of Gray

26 wks

201 Days in the NICUHolly D Gray4 Comments

A lot has happened in the past few days. Talking with potential transfer hospitals, meeting with our doctors and speaking for the March of Dimes Signature Chefs Kick Off. So lets get down to it.....shall we?

Other Hospitals: Pittsburgh Childrens, Boston Childrens, & Miami Childrens

So each of these hospitals offer the same kind of care we are receiving at Cooks except the fact that they are large transplant centers. We still don't know if Caleigh is a candidate for transplant because of her PVL. Our doctors are calling around and discussing the options with these institutions. Transplant would be LAST RESORT and there is still so much to do before then. Boston Childrens is one of our first choices because they have Omegaven (read this link....it's uber important) and a protocol set in place. A few months ago Eric and I brought the info about Omegaven to our Neo. We have approval through Harris Methodist, but we are still awaiting approval from Cooks. We have the best neonatalogist there is fighting for Caleigh and succeeding in getting Omegaven for her. We have a few more hurdles to overcome with home health (since Caleigh would be going home on it)and then she should be able to get on it within the next few weeks. Caleigh's direct bilirubin is 3.5 this week. This is amazing! At the begining of January her level was 13 so we are making some great progress. BUT, and this is a big one, Boston's protocol states that the direct bili needs to be at or above 2.0 to be able to get Omegaven. In the time and effort it will take to get up there, probably 3 or more weeks, Caleigh's bili might possibly be lower than their limits and therefore she wouldn't be able to get on it. Theoretically making our transfer in hospitals not logical at this time. So what does this mean.....? Well, we are holding tight for awhile, looking into transplant hospitals if necessary and still waiting to bring our little girl home.

Next item of business is the Care Conference.....

Tuesday at 1, Eric and I sat down with all of our 'team.' Neo, GI, Case Worker, Nurses, Pharmacist (surgery couldn't make it, but sent their thoughts) So what did we get out of the 2 hour meeting? Well, Caleigh is loved and cared for by the best. With a lot of thought and prayer we entered the meeting hoping for the answers we were looking for. After all, this is our daughter's life we are talking about here. We didn't want to make any rash decisions. Everyone was extremely helpful; we talked about other hospitals, the good and bad of transferring Caleigh and our expectations as her parents. As I always say: Doctors are people too. They don't always have the answers, no one will know when Caleigh will be able to get off of IV nutrition. Every child is different. It could be months it could be years & possibly never. We expressed our concerns over her growth. Caleigh hasn't really gained weight in the last month or so, she's 8lbs 13oz today. GI is going to watch her growth, monitor her TPN, and increase the calories that she gets through her IV. Lately they have been optimizing her IV nutrition to benefit her liver function and it has worked wonderfully, but at the same time we need Caleigh to be growing strong. We also voiced our opinions about one of the GI docs that hasn't been helpful, useful or available at all. This person is probably the main reason Eric and I started looking elsewhere for care. As of now we don't have to deal with that doctor anymore. Which makes our decision to stay close to home ideal. We talked a lot about the what ifs, Omegaven and the future. It's hard on a day to day basis to talk with most of the doctors because of the noise, trying to keep Caleigh happy while talking and hoping your at the bedside when the docs come by. 6 mths in the game though we can pretty much get in touch with whomever we want whenever we need. All in all, Eric and I were very pleased with how things went. It's so nice to sit down in a quiet room and converse with the people that care for your child.

On to the fun stuff...well sorta

I was asked to speak at the March of Dimes Signature Chefs Kick Off. This is where all the committee members get together listen to our stories, have a little breakfast and then they toured the NICU. Lets just say that I'm pretty sure I didn't get a word out straight with all the blubbering, crying & tears. Have you ever tried to talk while crying? Not pretty.... Anyways, the Signature Chefs Event is amazing. Last year they raised over $250,000 dollars for the March of Dimes just at that one event. Hopefully when I'm more removed from the situation, and the emotional reality of our premature baby isn't so fresh months and years down the road; maybe then we will be able to tell our story to more people and make prematurity & birth defects a thing of the past. Trust me, I will be giving out more info on this event as it gets closer. It's a must!

A little bit about RSV.....

Caleigh has been getting RSV shots since October, these are not quite vaccinations, but rather infusions of live antibodies subcutaneously that are designed to protect---though not vaccinate you against---respiratory syncytial virus, which is what causes a common cold in most of us but can land preemies and others who have lung damage, on ventilators. This is a preemie parents nightmare. With Caleigh's immune system weak we just can't chance things. RSV season runs from October through April. We would love for everyone to meet and snuggle Caleigh, but at this time we just want to bring our baby home and be able to stay there. This all comes from dear NICU friends of ours who recently had to return to the hospital due to RSV. We pray that their son gets better soon and all returns to normal within their home. So we hate to be the barrier of bad news but we promise that Caleigh will be able to come out and play soon, but only when her little body is ready. Wouldn't you do the same?

Last but not least... how's Caleigh?

We are currently up to 3ml an hour continuous feeds. The goal is still up to 5ml an hour but she must be tolerating it and her medications need to be stable before they see her out the door. I could guess a date or two, but I'm just not going to do it right now. She is still very ill, fussy most of the time and can't sleep. The NICU is so loud for a big baby to be sleeping in. I can't wait to get her home and get a routine started with her. The end of last week we did an abdominal x-ray, just part of the routine when her tummy is distended. Anywho, the radiologist report came back that there might be a possible femur (thigh bone) fracture just because part of her leg was showing in the tummy x-ray. So they ordered her arms and legs to be x-rayed and what'ela know there it was. Caleigh's left femur and right radius (which is her wrist) has been fractured at some point in the past. It is old, straight and healed up. We don't recall her favoring theses areas at any time & there wasn't any swelling. So there is nothing we can do at this point but be very careful with her. Caleigh's bones are fragile due to the lack of nutrition from not eating. Just another side effect of TPN that we have to deal with. Other than this new issue to add to our long list of things to watch, Caleigh seems to be doing about the same. No dramatic improvement, but at the same time she isn't back sliding.

Wheeewwww, it's been a long few days, thank you to everyone that offered help and support to our family. It truly means a lot to us. Your prayers have helped us make the right decisions for now and we are blessed to have so many people that care for us on a daily basis. xoxo

 

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