It Comes In Threes......

We were woken up today by a swift kick in the ass from the cosmos. MFH struggles with a complicated health issue himself, which includes scoliosis secondary to multiple Scwhannoma tumors on his spine, that are ultimately wreaking havoc and pushing everything out of alignment. This is something we've been dealing with for years, as it was discovered merely weeks before Number Four's birth. When he attempted to stand up this morning, he quickly realized that he couldn't, as he was on the brink of another blow-out. Normally, he doesn't get any warning as to when this will occur. There have been times when he simultaneously lifted a coffee pot and coughed, causing him to end up on his hands and knees, and writhing in pain. I've also witnessed him black out from shock caused by the agony that he endures on a hit or miss basis.

This Morning. He's Actually Standing Upright

His condition has progressed to the point where the spasms have become severe enough to completely manipulate his posture (see above). The good news is that this time, he had warning. He felt the pressure in his back yesterday evening. However, it is still excruciating. And I've spent the day helping him in and out of his desk chair, which is the only piece of furniture that offers him any relief right now. To squat the extra few inches in order to sit on the sofa is impossible, and he refuses to lie in bed "like an invalid". Until this subsides, the next couple of weeks aren't going to be easy.

After staving off a bout of bronchitis in the beginning of December, I awoke this morning to a ridiculously irritating and painful cough. Other than a low grade fever, I don't have any other symptoms. But I do have an appointment tomorrow, in the hopes of receiving something to clear this up once and for all. This is what I get for sharing cups and forks with Number Five. If there is a germ in a fifty mile radius from that child, she will surely catch it, and pass it along. But, she's assured me that I will be just fine. All I have to do is make her some chicken noo-noo soup, and I'll be a hundred percent.

All of this causes a huge rift in life right now. About two weeks ago, one of Little Bird's nurses took notice to some problems that she's been having. There's no way to make this sound anywhere near discreet or ladylike, so I'm just going to explain it straight up. She's gassy. She's been gassy. Since the day she switched from breast milk to formula, this has been an ongoing issue with her. But because she requires a certain high calorie, preemie formula to maintain her growth, it's been in her best interest to leave her on it, rather than switch her to a different type or brand right now.

 She's also a puker, prone to spitting up all the time. Months ago, she was diagnosed with GERD. But it wasn't until this nurse was assigned to Little Bird did the missing pieces of the puzzle fall into place. She took notice to these symptoms right away, and proposed a Farrell bag to help Little Bird. Because the G typically cancels out the need to do so, she wasn't being burped. A Farrell bag is simply an empty IV bag that attaches to her mic-key tubing during and after feeds. It's designed to eliminate extra gas in G-Tube patients by way of the weight of the food forcing air into this device, rather than through the digestive system. And for the most part, it's been helping her tremendously. She no longer gets belly aches after each meal, making the experience that much more pleasant for her.

About a week ago, her respiratory team lowered her vent pressure settings down to five, since she's been doing so well on seven. She was able to handle this, but began showing signs that something was wrong. She started to bog out during her bottle feedings, and was only able to eat a fraction of what she now does. They chalked it up to exhaustion, and opted to raise her pressure back up to seven. And this is when our PA, Claire, put two and two together. She started to suspect that Little Bird's reflux might have been the cause of the feeding problems, as well as her inability to maintain the lower vent setting. She ordered some tests to check for the possibility that the baby's formula could be backing up into her lungs, and the results came back positive. 

After consulting with one of their pediatric gastroenterologists, it's been decided that the best course of action to take right now is to regretfully, put Little Bird thru another surgery. An operation that was actually supposed to have happened back in the NICU and at the same time her G-Tube was placed. Or, so we were told by one of the neonatologists while we were there. Though, when it came time for the procedure itself, the surgeon that we spoke to told us that he saw no need for her to have it done, and decided against in while they were already in the operating room. Something that would have taken twenty minutes of time spent performing a laparoscopy then will now take a minimum of two and a half hours during a laparotomy at seven thirty tomorrow morning. 

And that's if they don't run into the complications that they are already expecting. That of scar tissue that has formed as a result of the G-Tube, which they suspect will interfere with the Nissen fundoplication that they are hoping to achieve. If the scarring is as vast as they are considering it to be, they will essentially have to remove her feeding tube in order to properly wrap the upper part of her stomach around her espophagus. Once that's accomplished, she'll likely then have to have the gastrostomy placed in a new site. 

I can't even remember, off the top of my head, how many times this child's been placed under general anesthesia already. She's not even quite six months old yet. But I can say that it's been at least twice the amount I've ever experienced as an adult. The fear. The worry. The heartbreak. That awful look in her eyes when she wakes up. I wish I could do this for her. I wish I could somehow transfer all of the pain that she is going to endure, and take it away. I hate that I can't help her. It just isn't something she or I will ever get used to.

Only four days into the new year, and the universe is already beginning to pile it on. They say things like this come in threes. Maybe if we get it all out of the way now, the months ahead will prove to be a lot smoother. Hopefully Little Bird's later years will be blessed with nothing but happiness. God knows she's already earned that right. 








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