Day 65 November 18, 2010

I wrote the last post, but somehow forgot to publish it! Sorry to have kept you all thinking I was miserable for so long! Things have gotten better and I’m sooooo elated to report that we get to bring our baby home on Sunday. Somebody, pinch me, because this just doesn’t seem real.

The news came as somewhat of a shock to me this morning after having spent the last 24 hours struggling with a very difficult decision. Yesterday, we were given the option of having a feeding tube (G-tube) surgically placed in Lila’s belly and bringing her home. Or, give her a few more weeks to see if feedings improved. She’d hit a plateau with her feedings — only taking 40 to 50 percent of her volume — so this was an option to get us home. The surgery would require Lila going back on a breathing tube, pain medication, and, well … it’s surgery. With the feeding tube, we’d continue to bottle her every three hours at home, then whatever she didn’t take via bottle, we’d give her through the tube, just like we’ve been doing in the hospital. After some major soul-searching, input from family and friends, including my amazing support group of other pPROM mamas, we knew what our decision would be. I came to the hospital prepared to tell the doctor that we were opposed to the G-tube at this time. We felt it would be selfish not to give her a few more weeks just because we want her home with us. I also wanted to ask why she couldn’t come home with the NG tube, the tube she has in her nose now. It’s less invasive than surgery, it’s what she’s had all along and we’re used to it. Before I could even bring up the idea, the doctor offered it as a third option for us. My eyes lit up, I started bawling and said, “YES YES YES! I LOVE THAT OPTION!”

Going home with the NG tube, I’ve learned, is a bit controversial here in the halls of the ICC. The nurses don’t like the idea and the doctors don’t typically send babies home with it. Babies often pull the tube out, which is no big deal, but then the tube has to be replaced by a nurse, not by me (although, I’m sure I could handle it … 🙂 … ). The tube can also become misplaced, so I’d have to be trained on how to check for correct placement, etc. Hell yes, bring it on! I am capable of this. n Even one of our primary nurses said she wasn’t a fan of the idea at first, but when she thought about how committed we’ve been and just how much time we’ve spent with Lila and learning all that the nurses do to take care of her, she concluded it’s a great option for us. Everyone will have their opinions about this, but we feel this is a great option for us. Lila can come home and we can continue to work on bottling and breastfeeding. If she doesn’t show any improvement over the next six weeks or so, then we’ll have to consider the G-tube afterall. But I believe that once Lila gets home and has the same people caring for her around the clock, that she’ll take off on her feedings and all this talk about a G-tube will be a distant memory.

Since learning that Lila will come home this weekend, I’ve had an incredible dose of adrenaline pumping through my body. I brought her car seat in tonight and was so damn proud carrying that thing through the hospital. I’ve looked on with envy at the many parents I’ve seen coming or going with car seats knowing that someday we, too, would get to drive away with our daughter and GO HOME.

The next few days will be busy ones as we prepare the house for Lila and wrap up loose ends here at the hospital. We take our CPR course in the morning, then Lila goes in for her car seat test. She’ll get her feeding, then they sit her in the car seat for 45 minutes or so to see if her heart rate of o2 saturations drop. I’m confident Lila will pass, this, her very first test. Then, for the first time, we introduce our girl to the outside world and bring her home. Just in time for Thanksgiving.

Day 59

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.