I want to thank all of you who have taken the time to read and keep up with us. I apologize for taking a hiatus for the past week or so. Work at the hospital has been steady and I've just been down right exhausted. My days at home are super busy and by the time we get all the kiddos to bed at night I lay down and I just pass out!
I took Henry to the GI surgeon last week and his weight was down yet again. I was really discouraged for a few hours and then I decided to take matters into my own hands. I calculated what I had been feeding him and decided I'm just going to up his calories a notch. I also had a recipe from a nutritionist on how to make my own formula. This change to homemade formula has not been without it's challenges. For starters, it's definitely more time consuming. I'm just not sure which part is consuming the most of my time. The blending of the ingredients required to make my own formula? Or the constant changing of bags and tubing because the new formula is so thick that it keeps getting stuck in the G-tube. Okay, definitely the later. Also, I've had a few incidents and apparently Matt has as well, where in an attempt to forcefully push the formula through the tube, the pressure has built up enough that it comes squirting out the other side of the tubing. There really is nothing appealing about having pureed salmon and veggies shot up into your hair and face. So, that has been both challenging and annoying. On the flip side, I swear that little Henry is getting the semblance of a near double chin--so in that case I say it's worth the extra time and effort as well as change of clothes.
Also, in the past week, with Henry loosing weight and the doctors here seeming unsure about how to help him, I decided to just call Cincinnati Children's aerodigestive clinic and talk with Dr. Cotton's nurse myself. Dr. Cotton is one of the leading surgeons in airway reconstruction surgery and Cincinnati is really the place to go for a laryngeal cleft repair. I really felt that his nurse was thorough and took a lot of time gathering information about Henry. She said she would present our case to the team and that they would review it and get back to us. That was last week and I haven't heard back yet. That's another reason I haven't written, because I was hoping to have more information for all of you by the time I posted again.
So for now, we are waiting to hear what Cincinnati has to say about Henry and if he would be a candidate for their expert assessment of his situation. Over the past few weeks I have come to a feeling that I need a second opinion and that I need to take Henry to the experts. Hopefully, I will hear something early this week and I will keep you posted.
We also have follow-up this week with his pulmonologist and the ENT surgeon. I have a lot of questions to ask them and it will be interesting to see how they answer.
Further, I also contacted a speech therapist who just happens to be the mother of some kids that Matt used to babysit! She was so helpful and told me that she was going to get in touch with Developmental Pathways to help get Henry access to therapy in order to prevent him from loosing his oral motor skills (since he isn't allowed to eat by mouth right now). Also, she said she would refer him to a nutritionist who could come to our house to evaluate him. Believe it or not, these resources are free to children who have issues like Henry does; I had no idea until a friend of mine gave me this information.
Basically, I'm doing everything I can to try to keep Henry well and help him gain weight. I have to say the past week has been wonderful, he is breathing clearly and is finally NOT SICK with any cold or virus. I feel like I've just been able to enjoy him, watching him change and grow. He is becoming more and more a toddler everyday. He is busy crawling and cruising all over the place and constantly babbling.
A few really cute things he is doing right now:
No matter what is going on, if you put music on he stops what he is doing and immediately starts to rock back and forth and dance.
He has this cheesy smile in which he shows off his new over sized front teeth and it is absolutely adorable.
He has started a new hobbit of "dipping" his pacifier in anything he can. This was started by myself in order to help him have "tastes" of foods, since he can't actually eat. For instance, I would dip his pacifier in his milk so he could taste it, or put a drop of baby food on the pacifier while his liquid feed was infusing. Now, every time he's hungry, he will hold out his pacifier, essentially asking you to dip it. He has gotten to the point where in the morning, he holds it out when I have a coffee cup and will literally throw a fit if I don't dip it in my coffee. So there you have it, the fourth baby gets to taste coffee every morning, because he demands that his pacifier be dipped, and because I don't have the heart to refuse him a little taste!