I started out writing this post a few days ago. Then put it off, then got busy. I think I delay updating because it makes it a little to real sometimes. Sorry. It's easy to go through the motions and not think due to being to distracted by what is currently happening. And our hospital and doctors are very into having us make big decisions. So we focus on that instead of, "Hey, this is all really happening to our infant daughter."
So here it goes.. as always, very busy little girl.
Yesterday she had her surgery. Her surgeon found a port small enough for Anabelle. Which was so exciting, that way she didn't have to have a broviac, meaning there are no extra cords or tubing sticking out of her. So she had the port place, had a muscle biopsy and they switch her J-tube to the same type of tube, just a new tube.
So in preop, we meet the anesthesiologist. After looking over her veins, he asked us why we were getting a port, and that she has great veins. ARE YOU SERIOUS?! This has been something Kyle and I have been deliberating over. Because it is optional. But then we keep reminding ourselves that winter is coming, and that we don't want her to go through what she's been through for blood or an IV one more time. Plus, if she gets sick again, and dehydrated, and they can't get an IV started, she could go into shock and things could be 100% worse. Thanks Dr. Anesthesiologist for making us doubt our decision in the 12th hour. Thankfully her surgeon (who has known her since birth) agreed with us and went forward with the port.
The surgery took longer then expected. The surgeon said it should all take about two hours. When the 1 hour 45 min mark came, I called back just to see where they were, how she was doing, etc. The nurse said that they just finished the port placement and J-tube, and were starting the muscle biopsy. AH. Why? What happened? Is she ok? Well.. she is/was fine.
The issue was the doctor had a tough time placing the port due to her anatomy. I understood what that meant when I saw her. Typically a port goes right around or below the collar bone. She had about 4 nicks where he attempted to place it there, then one on her neck covered with a steri-strip. He ended up placing it on her side, below her chest, but kind of on her ribs. There is a little cut about an inch or so above it where he cut to place it. Before we got to see Anabelle, the surgeon talked to us. He explained all of this to us. We were scared, having no idea what to expect and all and asked how she was. He said she was fine, she did great. But that he was frustrated and not thrilled with what he had to do. He didn't like where he had to put it, and that it is going to her jugular, rather then normally coming out by the heart area (from my understanding). But that it is fine, will all work the same and she won't know the difference. This was huge coming from him. He is a very reserved fellow, who only talks when he needs to, and doesn't speak very loud. Him telling us how he was frustrated made me realize how different Anabelle's body is then other kids.
But all in all it went pretty smoothly. The anesthesiologist let us know, again, that she has a small airway, and it was difficult to intubate her. But it was nice because he gave me pointers to let the next anesthesiologist know ahead of time what to expect and how to make it easier.
We finally got to see our baby girl about 4 hours after handing her over. She was not a happy baby. We discussed which pain meds to give to her with the nurse. She said Morphine. I was TERRIFIED. The last time she had Morphine was after her Gastroschisis repair. And she was on a ventilator for 5 days. And they had to bag her time and time again. Like I said, the hospital is very parent guided. Great. Make me make this choice while my daughter is waking up from surgery, in pain... Ok, let's do it. Her normal dose would be 1.5 MLs, and we started out at .2 MLs. About 15 minutes later we realized that didn't do much. So she got another .2 MLs. Then she was feeling much much better. No more crying. Her crying wasn't full on crying, it was more like whimpering. And no side effects!! She did wonderful with it! Still hate giving it to her... but it worked. Then we were still suppose to go home that same day. Neither Kyle or I felt comfortable with that since she had so much done. We just didn't feel comfortable we could control her pain, and what happens if her breathing acts up? Nooo thank you. Finally her surgeon said we could stay overnight. Oh, and I got my honorary nursing degree yesterday too. I wish it could work in real life and I could skip the schooling.. Ana's nurse in recover just mentioned how I know everything about her and how I could do everything she was doing. So maybe I could just be Ana's nurse :)
Later that night the nurse on the floor was giving Ana her meds, and she clogged her brand new tube. Now... I've done this countless times, so I knew it could be unclogged and didn't panic. But I guess her nurse is new, because she mentioned, 'Great, the rookie nurse clogged your tube.' Next time ya might want to keep that thought in your head, just sayin'. So I walked her through it. Told her what to grab to unclog it. But man, she clogged that thing up good... It was tough to get undone, but after about 20 minutes it was done.
Anabelle slept all night, with only waking up her and there to whimper and complain. But overall her pain was controlled. She did have some weird breathing until about 11 PM. She was breathing like you would after a good hard cry. Kind of a hyperventilating breathing. But she got Tylenol with codeine at 10, and by 11 it stopped.
I do have to mention that after she got her Morphine and opened her eyes in the recovery room, we got a few half heart-ed smiles out of her :)
In other news..earlier this week we meet with her GI. She has plateaued with her weight. She is hovering around 11 lbs now. She wants us to slowly increase her feeds again, until she can no longer tolerate it. We have to find her threshold. We think that with the extra therapy, and how she is almost always sweating, that she is burning to many calories. And since we can't stop either of those things... So she was at 16 ML/hour, and the GI wants us to go up 1 ML every day to every other day. As we see fit. Another thing where it's great because we went to medical school and all.
I really can't complain. I would be upset if they were telling us what to do and not asking our opinion. It just makes me nervous because I'm not a nurse, a doctor, or anything close to having any say over anything medical. We will see how far up we can get Anabelle. The goal is at least 20, but who knows what she needs, it might be higher. Her GI is trying to avoid the use of TPN. It can cause liver failure, and we don't need to go down that road. She is a big advocate of NOT using it.
In family news!
Allison started preschool (the same day as surgery...)!!! She will be in school 5 hours a day, for 5 days a week! She said that she liked it and had a good time. Of course I feel horrible though. Since it was planned the same day as surgery, we didn't pick her up and Kyle's mom did. Thankfully we have someone to do it (Thanks Cindy!), but it's something I would want to have been able to do. She did get cut on the chin by a little boy though... :(
And Amelia had her first day in a 5 hour class, with a new teacher. She said that she liked it too!! And that she had fun, which is such a huge relief. OH. I called during the day to check on them. The teacher said that Amelia didn't take her nap, as usual. But she kept saying that she had to go potty. This is her way of avoiding naps and bed time. But every time she got up she did her business, so I guess you can't get too mad.
But they are such awesome little girls. The other day Amelia asked if the doctors were going to cut Anabelle. We have decided it is best to keep the girls in the loop, and try to prepare them and explain things about Anabelle as best as we can. We don't keep anything a secret, we are an open book with them. I know they are only toddlers, but.. we think its best. We'll see how it plays out in a few years, but, for now we are doing what we think is best.
I digress. She asked about the doctors cutting Ana. I said yes, they are going to do it tomorrow. She got up and come over to us (I was holding her), and said how she doesn't want the doctors to cut her. We explained what they were doing, and why. What to expect the after, and how she will need to be careful with her. She said that she was sad, and that she didn't want them to cut her. And how she wanted to cry. Oh. My. Goodness. I love her!!!! She didn't cry. But just to know that she is so mature at four to realize this, and what's going one. Meanwhile, Allison is in the background jumping up and down, saying, 'They're going to cut her', kind of in a singing voice...
Now, some might think this is horrible, because it's too much on a four year old. You might be right. To me though, I interpret it as her understanding what her baby sister is going through, showing proper emotions, and showing that she loves and cares about her sister.
With each passing day Anabelle is getting better and stronger. Tomorrow we get to schedule an appointment to use her port for a blood draw. I'm terrified. I'm scared that it will still hurt, but mostly I'm scared it won't work. We will see...
But we appreciate everyone's support, prayers, thoughts and good vibes through everything. It really makes a difference knowing people are there for us, and more importantly for Anabelle. Thank you!
With love,
The Polks
