Last Sunday afternoon, MFH and I met with one of Little Bird's doctors. The same neonatologist who, on October 28th, told us that he foresaw no need for a PEG tube. Yet, three weeks later, he sat in front of us, telling us that Little Bird is now classified as having an eating aversion. All of a sudden, his opinion is that she will never be able to sustain her caloric needs by bottle. His reasoning for the surgery was not only for this so-called issue, but that it will allow her to bypass learning how to bottle feed all together, and go straight to a sippy cup and spoon feedings when the time comes. As he was describing my daughter's lack of muscle control within her jaw, mouth, and esophagus, I was holding her. I was also watching her stick her tongue out at MFH, and I could feel her clamping down on my finger thru her binky.
I wanted to argue these very valid points with him. But I let Little Bird have the pleasure of proving him wrong in that moment. He then went on to explain that long term, intensive rehabilitation was the only way she will ever learn how to eat. I couldn't bite my tongue anymore. I cut him off at the chase. I asked him something directly and point blank. If we agreed to the surgery, how much longer until she could be released to come home? No more ping ponging the preemie. No more treating her like a number on a chart. No more doubting her abilities. No more bureaucratic bullshit. Enough is enough. Home.
For about ten seconds, he said nothing, and actually gave my question some thought. And then? He replied that so long as no complications arose, seven to ten days. From the date of the procedure. And suddenly, this became the game plan. She would have the feeding tube inserted. During her recovery time, MFH and I would complete the rest of the vent training plus that of the PEG care. And then, she would be discharged to finally come home. For how easy it all sounds, it is still morally vacant. But it's hard enough to sleep at night when your child is hospitalized miles away, if not damn near impossible to function at all when you know that she is surrounded by strangers who are treating her like a fucking statistic. I had to put myself in her booties. What would she choose, if she could?
We didn't give a definite answer that night, instead opting for enough time to make sure that this was absolutely the best we could do for her, given the circumstances. After struggling with it overnight, we called her team on Monday morning to give them our consent. Only to hear that the rest of them were not on board. Once again, they slung the word 'policy' at us. But this time, I'd had about as much as I could take. After ending the call with them, I immediately placed another with the NICU of a different hospital.
Right after a discussion with their attending physician, I called Little Bird's unit once again and told them to prep her for transfer. Apparently, that was enough for them to realize that we'd had enough of their fuckery. No sooner did I say it did they begin to back peddle. In an instant, all of the cards were back on the table. They very quickly agreed that the strategy we brainstormed with Doc K was ultimately the way to go. Two hours later, their surgical team contacted us to inform us that Friday would be the day.
Except, it wasn't. I don't have a whole lot of experience with surgeries. But I do know enough to know that this was not an emergency procedure. Little Bird was doing just fine. As of Wednesday, she weighed eight pounds, eight ounces. A gain of three ounces in just a few short days. She was eating two and three quarters of an ounce of formula per NG feeding, as well as ten millimeters by bottle. Her CPAP trials had been increased to nine hours at a time. She was doing so amazingly well.
Which is why I couldn't understand why they decided to reschedule the procedure for Thursday morning at eight o' clock. Her first Thanksgiving. Spent in the OR. Her first Thanksgiving. With her feeds having been paused Wednesday at midnight, not resuming until a few hours ago. Our plans, weeks in the making, to bring all of her siblings to visit her at once, and spend the day watching them hold her for what would have been the first time any of them ever got to, were thwarted. I would like to think this was nothing more than an oversight. But, knowing that most surgeons prefer not to do elective procedures on major holidays? Knowing that for the past week, I've emphasized to the staff how much her brothers and sisters were anticipating this Thanksgiving, so much more than any other?
Somehow, the rest of us managed to make it thru our holiday meal without a hitch. For how much my kids can drive me to consider a career in alcoholism, days like Thursday are the perfect example of why I say, without any doubt, that I have the most wonderful offspring on the planet. While MFH and I scurried around the kitchen like an episode of Iron Chef, the five of them (Number Five included), pulled out and put on their Sunday best without even needing to be asked. In all honesty, they could have stayed in sweatpants or pajamas. After all, it was just the seven of us, celebrating together before heading down to the hospital to see Little Bird. But this was a big occasion for them. And they dressed as if they were about to spend the day with the President of the United States. When I laughed and pointed out exactly that, they replied that Barack Obama had nothing on their sister.
Immediately after dinner, we rounded each other up and hustled to the unit. Because of the surgery, we couldn't all be next to her bedside as we'd arranged weeks earlier. Because of the surgery, we couldn't even touch her. So during the drive there, we decided that the girls and I would go in first, and visit for as long as Number Five's attention span would allow before swapping with MFH and the boys. We buzzed in, and no sooner did we pass the main door did Number Four and I pull Number Five aside and explain that she needed to use her indoor voice so that she wouldn't wake the sleeping babies. She doesn't understand what an operation is, so we told her that Little Bird was very tired and that her belly hurt, and we couldn't give her kisses until she was feeling better. She was able to sympathize with that, and was on her absolute best behavior. We scrubbed in and made our way to Little Bird's corner.
Since she was only a few hours out of recovery, she was in a warming bed instead of her crib. Number Five quietly gasped when she saw her. It was the first time she had ever stood face to face with her baby sister. Although, she's seen every photograph and watched every video a hundred times, it wasn't real until that moment. In those first few seconds, the connection was made in her mind. Her baby (as she calls her) was suddenly very real. And she was not afraid, like I thought she might be. Even though all of the IV's are back. Even though she has two incisions on her belly, which was exposed as she only wore a diaper. Even though she was covered in leads. Even though the ventilator was once again breathing for her completely, and we could hear the increased oxygen hissing thru the tubes. Number Five smiled and said, "Awe! That's my baby! She grow'd so big! Good girl!".
Number Four's reaction was a bit opposite. I could tell by the look on her face that she was shocked. Uneasy at the sight of just needles, she was a bit scared. But she held up like a trooper, and was happy to see how much bigger Little Bird has grown. She asked me what each wire and piece of equipment was, and I explained it all to her. This seemed to help put her at ease. I also explained that she wasn't in any pain, and was able to sleep thru the worst of it. She wanted to touch her hair, but knew that it was best not to disturb her. A few minutes later, Number Five said she was ready to go, and we went out to the waiting area where we switched positions with MFH and the boys.
They went inside, and were also surprised at the sight of the now eight and a half pound baby in front of them. The last time they'd seen her, she easily fit in the palm of either of their hands. Number One, I think, had the most difficult time biting his tongue. Quite frankly, he is just as upset as I am about Little Bird having to undergo the procedure. But he conducted himself as I expected he would, like an adult who knew that his baby sister's bedside was not the time or place for an emotional confrontation. MFH took a few pictures for our album (which we've decided against publicly posting, something I'll explain in the next entry). While he was answering the boys questions and talking to the nurse, Little Bird heard their voices and smiled. She tried very hard to open her eyes and take a peek at her visitors, but she'd just had a dose of pain medication before we'd arrived, and couldn't quite keep them open. Though, we were all happy just to know that she was okay, and that she knew she was not alone.
As of tonight, Little Bird is kicking ass and taking names. She isn't allowing anyone to put or keep her down. She stabilized her temperature throughout last night, and is now dressed and back in a crib. Her physical therapist worked with her this afternoon. No bottle, just leg exercises and sitting upright. But she sailed right thru those, and gave both the PT and her nurse a cocky little smile as she did (that's my girl!). She isn't experiencing a whole lot of pain, only requiring one dose of meds all day. And she successfully took two small feeds thru the PEG so far. Her vent pressure settings remain the same as they were last night, with a bump in oxygen. Tomorrow, they'll attempt to lower them and see how she handles it. Her IV's will also be removed, as well as the NG tube. For the first time since she was born, she'll have nothing obstructing that beautiful little face.
All that stands in the way from her being released is some further training on our part. Primarily, how to care for this new device. She is two weeks away from turning five months old. Today is day one hundred and thirty nine. Hopefully, the next two weeks will be the home stretch. She is ready. She's saying as much herself thru her actions. She wants to feel the sunshine on her face and the wind in her hair. She wants to be with her family. She wants to come home.
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