and its not even half over yet!
We started out this morning with Kendall’s Early Intervention Intake Meeting. I met with a coordinator to discuss Kendall’s medical history, my concerns for her, and why her doctors were concerned enough to refer her to the EI program (its the free state program that provides therapy and assistance to kids with delays and disabilities. Karissa went through EI to get her speech therapy and get all caught up.) Anyways – our coordinator is pulling together what is called “the full team” – meaning that it seems like Kendall has or will have delays across the board and needs a full range of supportive services. While i am so grateful that we have access to all the help she needs, its just more confirmation that she will, for the foreseeable future, be a “special needs” baby.
We have those assessments on the 24th of this month, and then any recommended therapies and services will begin within ten days of that meeting. That will be right in line with her dysphagia therapy/Vitastim starting on the 1st of April. My new goal is to have this child off of her feeding tube and able to taste her own first birthday cake. It might be a lofty goal, but for now it is mine to hold on to.
So after the EI meeting, Kendall’s home nurse came. I had been very concerned about the fact that Kendall has been puking and having horrible diarrhea since Monday. i mean HORRIBLE. Kaylen had reflux, I have dealt with the laundry problems that baby reflux can cause. Kendall’s issues were like reflux times ten! it was just horrific to watch it coming out of every orifice in her face, and then to see her just lay there completely wasted from the effort of throwing up with such force. She hasn’t been the happy baby we did get glimpses of last week, and that was sad to me. So today when the nurse came I was NOT going to let her leave until I had some kind of answer or direction about what to do about this. She went over the rate/flow on kendall’s pump with me and was actually shocked that we had been able to get Kendall’s rate up so high, as it seemed like a VERY large amount for a baby her size. (we had gone up that high per her doctor’s orders). It was good to have my gut feeling confirmed, that we were just putting too much food into her stomach. So – back down we go. Again, not hugely disheartening in itself, but just enough to add to my already disheartened state from the EI meeting, that we’re backing farther AWAY from the goal of having Kendall eating like a “normal” baby.
It’s hard to explain without pictures (and i have them, I just can’t open them up onto this computer which is on its last legs and dying a slow painful death), but basically, Kendall’s pump determines how much she eats, and how fast she eats it. She is getting ALMOST the same amount as a normal 4 month old would eat (she gets 3 1/2 ounces every four hours) – but where it would take a baby drinking from a bottle say, 20-30 minutes to finish that bottle or to breastfeed to get that amount, it takes Kendall 3 and a half hours. And while i myself sometimes feel like I am eating ALL DAY LONG, Kendall actually IS! I mean really, folks, this kid has it so good! So while we HAD gotten her up to eating her “bottle” in right at about 3 hours, with an hour break, we are having to go back to the slower rate of 3 1/2 to 3 3/4 hours to eat her meal. Today she hasn’t thrown up ONCE though, so i feel confident that we are at a good place with her feeds. The main goal is to keep packin’ the calories on, right? however that has to happen, and right now it has to happen SLOW and STEADY.
But it’s hard. I wanted to have a little breakdown in the kitchen today, while I had Kendall strapped to me in the MeiTai sling, pushing her IV pole with the pump and bag of milk on it around the kitchen so I could get lunch for Kaylen and Karissa. Kaylen just wanted to be picked up and held, but my hands were FULL. Steadying Kendall, helping her hold her binky in (cause her mouth muscles still aren’t strong enough to suck on it strongly enough to keep it in by herself), holding the FOOD, pushing the pole with one foot, trying to answer Karissa’s INCESSANT talking and non-stop questions…and this is all when Ben is still in town, and I know I will get a break at nite. How is it going to be when he has to go back to travelling? I know that not every day will be this hard. Kaylen won’t always be tired beyond functioning, Kendall wo’nt always need to be held, Karissa won’t ALWAYS want to talk to me. So in spite of the chaos I just try to hang on to a shred of sanity and hold these moments dear.
I am just about at the point of not being able to watch “Baby Story” or “bringing Home Baby” anymore on TLC cause it is so sad to me to see the happy healthy babies, so chubby. Or see the moms able to still breastfeed their happy little chubby babies. I finally had to give it up last week – it was just killing me to try to find enough time to pump and do all the extra things required to try to keep my milk supply up. chances are very good that she will not even be ABLE to try a PO feed (from a bottle) for a few more months, during a time when I would normally be starting to wean anyways. So why make things that much harder on myself? and yet, its still sad to me. I don’t think I was ready to give it up for her, for the one who needed that amazing mommy-milk the most. But she needs a functioning mommy right now even more than she needs my milk, so that’s what I have to do. My arms ache to hold her like that just one more time though. I think I haven’t really grieved for all that’s been lost here with my baby. The “normalcy” of her infancy, or the possibility that it may never be normal again. Because i find myself breaking down in tears at the most random of times over the most random of circumstances.
So we keep moving forward. Hoping that one day soon we’ll have a breakthrough, or an answer. Knowing that somewhere in all of this God is working for His purpose, His glory. Trusting that in spite of my shortcomings as a human and a mother and a wife, that my family will all be ok. Relying on the amazing support and help of our friends and family around us.
Good news – we THINK we have all the pieces in place for the formula to be covered by insurance. I am waiting on a phone call back from our home health coordinator, but it is VERY hopeful at this point thanks to a LOT of help from Dr. A’s wonderful nurse, Margie. i’ll post an update if we get it approved today! Thanks so much to you all for praying for this issue specifically!