Not much has changed for our little ones over the past few days. It seems we're in a holding pattern of sorts. Collin still has yet to figure out how to take his feedings by mouth with any amount of consistency. He tires so quickly that he typically only gets in about half of what he needs in order to grow. We are waiting for him to have two full consecutive days of adequate bottle feeds/nursing before he can come home. I think he's just waiting on sister to take the lead, since she is by far the stronger-willed of the two.
Despite this strong will and feisty personality of hers, Kendra still has been unable to come off her nasal canula or her pain meds completely since surgery. She's been waking up fussy quite a bit, so when we visit and she's peacefully resting, we don't want to rock the boat. This has meant that, other than a few occasions, we've been unable to really hold her much lately. It's hard, yet we know that rest is crucial for her growth and healing. We are waiting on the surgeon's okay for her to start gradual tube feedings like her brother. This will be the first major step towards her road out of the NICU and home where we long for them both to be.
We met with a geneticist on Tuesday who evaluated Kendra to help us get a better picture of her situation. Her chromosomal analysis looked normal, which is encouraging. It looks like she probably has either what's call VATER association or Townes-Brock Syndrome. The first, and apparently more likely of the two, describes a related grouping of birth defects and conditions affected by a disturbance (possibly an infection, but unknown) at a certain point in her development when several features are in formation. The second is a genetic disorder, often hereditary, which affects many of the same systems as the other condition. In either condition, it appears Kendra would have a fairly mild case/presentation. If they are able to determine which one is affecting her, they will have a better picture of potential problems she may face down the road. With additional testing being done, the doctors told us to expect 3-4 weeks' wait before we really know anything. For now, what's most important is her recovery and growth anyhow. We'll deal with anything else when we get there.
Some days, all the back and forth from hospital to home, incessant pumping, endless consults and whatnot almost seems normal. Other times, it can get rather overwhelming. Like today, when I was given a stack of materials on caring for a child with a colostomy. Phew. I never imagined things quite this way, and sometimes I wonder how we'll get through this next month, let alone this first wild year. I believe God will strengthen us for whatever we face, but I don't imagine it's going to be easy. Just one step at a time. That's all we can do. Hanging in there.
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Liz,
ReplyDeleteReally, when we went through this with the pregnancy and all, it was comforting not to think too far into the future and to do just what you said and take it one day at a time. All you can do is face and tackle the challenges you have and as you know it does no good to worry and fret about what might be the next day. Glad you are taking it all in stride. It is daunting though at times! We will keep you in our prayers! Glad to hear that Kendra is a fighter...Caleb was too and he was the smallest of the two also. Something about those wirey, small ones that keeps them going!!
Blessings,
Heather