We had a great check-up yesterday! Mary Clare weights 7 lbs 11 oz, and counting!! She is a bit behind because she wasn’t given much caloric nutrition while in PCICU, only nutrients. So now that she is finally able to consume calories, she is steadily increasing her volume each and every day! She is now up to an ounce every 2-3 hours!
Well usually happy!! Sometimes McCanless would rather we not take so many pictures of her baby sister…
We have our first official check up with our cardiologist, Dr. Forbes, tomorrow in Charleston. If all is well and Mary Clare is gaining weight or at least maintaining, we will be okay for another couple of weeks. Mel, as exciting as it was to post that we were home, left out a few details that many people have been asking about.
We were able to come home, thank goodness, but only after Mary Clare was successful at intaking 130 Kcals/day. Unfortunately, I can no longer offer her breast milk. After blood work and a “poop” study, we discovered that Mary Clare has a milk protein allergy. (Did Mel mention to you all that about 2 weeks ago I tried to explain to our doctors that McCanless had the same allergy??) McCanless outgrew hers, so hopefully Mary Clare will too.
We were able to bypass experimenting with various formulas and go straight to the Nutramigen, which Mel calls “liquid gold.” It is a hypoallergenic non milk/non-lactose/non dairy/ non-anything formula that babies with this allergy must have. (McCanless was on it, too) Not sure what is in it, but for my girls it is worth every ounce of gold!
Mary Clare is still struggling to eat as much as a “non-heart” baby at this point, but everyday she is getting stronger and eating a bit more! (I think anyone would after heart surgery, right?) She is so beautiful and we are so glad to be home. Her big sister loves having her home and has few momentary “only child” break downs.
We will continue to have scheduled visits for check-ups, and if all goes well, they will only be 2-3 weeks apart until her next procedure. She has a heart catherization scheduled for November 13 and her second surgery, the Glenn, will be shortly after that. The cardiologists say that the second surgery isn’t quite as extensive and her stay in the hospital will be a bit shorter.
I’ll keep you posted on tomorrow’s check up! (and post pictures soon of big sister and baby girl)
Surprise! We were let out of the hospital with last minute notice today. This came as such a surprise, so we decided to let everyone know at the same time.
So, it ends – For now at least.
Our little princess has been getting sponge baths often, but today was a big day for her…she had her feeding tube removed AND she had a big girl bath! Ideally, we would have loved to have had her at home, in her new little baby tub with the video camera out and all, but we’ll have to settle for her new pink MUSC basin for now!
So here is our baby girl making her bathing debut…
Every cardiologist in this place has one central problem. They all begin sentences with the word “So.” “So, the Norwood procedure…”
It is almost a way of saying, “Hello, my name is Dr. Atz (A new friend who we call Andy) and I wanted to spend a little time talking with you… (you get the point.)”
At any rate, my wife and I now begin every sentence with the same word. We do this subconciously and it has become a harder habbit to break than quitting smoking. In like manner, I’ll begin our news of the last 24 hours as would any good cardiologist.
So, we have been trying to figure out how to make this beautiful little girl consume more calories than she burns while consuming them. It sounds a little oxymoron-ish I know. The reality is that this has been the single most frustrating period of the entire week, and is almost on par with the same stress waiting on the surgery.
We meet with the doctors each morning on rounds and begin the process of “Practicing Medicine.” Lately it has been the battle of a mother’s intuition of her second child versus practicle science. We have been adjusting volumes, tracking with razor precision her intake, formulating calorie consumption, and debating digestive track concerns.
Needless to say, it has been a trying 48 hours. We have gone from feeding 80 ml of breast milk every 4 hours, to feeding at will every 2 hours. Currently, mother’s intuition has won the battle and we will be trying to feed her much like we fed McCanless when she was a newborn. Most of you who know me will say that I am arguing with doctors for the sake of arguing. Arguably I’m not. What we are trying to do is educate them on the problems we had with McCanless’ digestive track that we see after feeds with Mary Clare. This is where medical science rubber meets the road.
The more experienced doctors seem to be paying a close ear to what the mother has to say and effectively weighing it against what their practice has taught them. In the end, however, they consider all sides before making a decision.
Mary Clare has been SLOWLY increasing her intake every two hours by just a ml or two. We are weighing her at every glance now that the feeding tube has been temporarily removed to make sure that she is in fact gaining wieght.
With a little luck she will progress from 30 ml every feed to at least 65, then more and then we can go home. The worse case scenario is that we have to put the feeding tube back in, resume a new pattern of fortified feeds, and eventually we get a G-tube placed into her stomach and we pour milk in. This will require one more surgery which we are against and not ready to face.
Kerri is doing well with being away from McCanless (Better than she has in past days, I guess.) It is ripping her apart to be a split family down here. I miss her as well, but seeing Mary Clare (who looks like McCanless at birth) reminds me of her. Other than dealing with all of these emotions, we are holding it together. Mental stress is tiring. We sleep at the drop of a hat, usually nap every few hours at best.
We are ready to come home.
I mean:
So, we are ready to come home.
So, I’ll write an update tomorrow.
So, until then…
So, thanks Dr. Atz.
So judging from the title you can only imagine that I’m looking out of our room window which is shaped like a porthole, and the motif of the cardiac rehab floor is a children’s sea theme. So I have been held prisoner aboard the USS Ped-Cardiac for several days now.
Living in these conditions is enough to keep a man out of prison; however, our Mary Clare is continuing to learn to eat more calories than she burns eating those calories. Currently we are still at the pinnacle, and she is still feeding by the tube every 6 hours and after she won’t take any more by the bottle every 3 hours.
McCanless had the chance to come to see her sister and needless to say it was an emotional wreck for us to have her here for a night an then have to send our daughter home again – without us – for week three. Kerri is in pieces and is beyond ready to go home and have her family together for the first time at the creek house.
Updating has taken a backseat on the weekend due to the small workspace and added traffic of feeding every 3 hours, having vitals every hour, and then rounds and such.
What makes this all-the-more hard is that today my wife turns 30.
Happy Birthday from your loving husband, Melvie, McCanless, Mary Clare, and the crew of the USS Cardiac.
Today Mary Clare passed her swallow study with flying colors. Her EKG of her heart repair looked well also. We are continuing to compress her feeding into an hour’s time while increasing her consumption volume. Tomorrow it will be reduced to thirty minutes.
*Big News: Tomorrow we get the opportunity to try bottle feeding for the first time, and as her intake increases she will graduate to breast feeding. This sounds like a simple thing to do until you realize that it will take the next two weeks, every three hours, to get her to learn to do this.
*More Big News: The bandages on her chest are off and her pacing wires were pulled from here heart wall this morning. All we have left is an IV and some telemetry feeds on her back to monitor her heart rate and saturation level.
We are still doing well in our little 8 X 8 cabin here on the cardiac cruise ship. When Kerri gets tired of me she makes me sit in the bathroom. Mary Clare has also been sleeping the entire day and waking like a raccoon at night, staring into the darkness with her teeny little eyes. She gets her night tendancies from her father. We’ll let you know how bottle feeding goes tomorrow.
Notice when my wife says we finally get to change her diapers and act like real parents, then notice the time of this post. Guess who slept all day today and will be up all night?
This is the Children’s Atrium, which is on the 7th floor of MUSC Children’s Hospital…where we are now!! We have graduated to 7C!!
This was just before we moved up to 7C!
Now Mommy and Daddy can hold Mary Clare anytime we want!! What a wonderful day!!
Mary Clare continues to do exceptionally well. She is still on her feeding tube and will continue to eat this way for now. Tomorrow, she will have her swollow study, and if all goes well, after the study we will begin to use a bottle a little bit each day!
Mel and I are settled into our new 7C room, which is wonderful because we finally are able to be real parents to our baby girl. We have to get up with her at night, change her diaper and best of all we are able to hold and comfort her, FINALLY!!
