Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

Day 59 November 18, 2010

Filed under: Lila,Sunny days — Aimee @ 10:39 pm

As we head into the weekend, Lila is a completely different baby than she was at the beginning of the week. She’s back to her old self. Even better. The morning after I posted my last weary post — upset about the state of my daughter and frustrated by the lack of urgency to do anything about it — the doctor came in and said, “I’m going to have to eat my words. You were right, we’re going to start her diuretic again.” Hallelujah!

An hour after she got her Lasix, Lila had a diaper that weighed 130 grams, all urine. For comparison, an average diaper weighs 20-30 grams. She continued to lose that extra fluid over the next few days and she’s no longer the puffy baby she was on Monday. She weighs 6 lbs. 14 oz. Retaining fluid is a very common issue in preemies, especially ones with lung issues. Lila will go home on the diuretic.

She will also go home on oxygen. I’ve said this before, but we’re beginning to learn more about how much, how long, etc. They moved her to a half-liter of continuous flow oxygen, which she seems to like very much. This is what she will come home on. And today, we learned she will likely be on oxygen throughout the winter, maybe even longer. I guess I was surprised to hear this, but then again, I hadn’t given it much thought. I’m still so elated that my daughter is here, and despite some very expected lung problems, she’s alive and well.

Lila’s respiratory rate has improved and she’s not working nearly as hard to breathe. She seems to be sleeping better and is awake for longer periods. She’s a very content and happy baby, all things considered.

Bottling has picked up and Lila even enjoys nursing. Although she’s still not strong enough to feed this way, it’s something we both enjoy, so we do it. Bottling is our main focus now as it’s the only thing keeping her in the hospital. The other night she took three full feedings in-a-row via bottle, which has never happened before. I think she was telling all of us that she can do it, she just needs a bit more time. So many of you have asked when she will be coming home. She looks healthy, right? Even I need to remind myself that although she looks and seems very healthy, she was nine weeks early and has lung problems that make simple things like breathing and eating more difficult. She has what’s called Respiratory Distress Syndrome and will outgrow this with time. Will there be any lasting effects? We simply don’t know. With that said, I think Lila will be home in two to three weeks … right about the time we move into the new house. Don’t ask, we’ll figure it out. We always do.

I’ve been spending most of every day at the hospital. When I get home in the evening, I do a little packing or cleaning, go to bed and wake up to do it all over again. I’ve spent a lot of the last eight weeks alone with my daughter. Well, really for the last five months, I’ve been quite isolated from the world. More than ever, I really wish we had family around. Our only family member nearby is my sister and once Lila’s home, she’s going to be a huge help. I don’t think she quite knows just how much we need her. Our parents have made several trips to visit, which has been great, but if our families were closer, life would be easier. Of course our families are always a phone call away and would drive the four hours in a heartbeat if we needed them, but times when I’m packing up boxes and labeling them “wall decor,” I think to myself: “Wouldn’t it be nice to have a glass of wine with Mom while doing this?” Sometimes you just want your family around, not because you need them per se, but because you want them.

When I look back on this blog someday, I just know I’m going to get to the posts chronicling Lila’s birth and beyond and realize what a wreck I was. Hang in there with me, folks. My thoughts reflect my emotions — a jumbled mess.

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One Response to “Day 59”

  1. Aunt Donna Says:

    Aimee, Your thoughts and emotions may be a jumbled mess right now but I think you are one hell of a woman and an amazing mother. I am so happy for you today. I wish I could be there to help you over the next few weeks while you’re trying to get moved. Hang in there. I love you all.


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