Countdown
Written Mar 6, 2012 10:11am by Amber Gannon Medina
This morning while I was eating breakfast on the couch I realized that every muscle in my body was on alert, my breathing was shallow and not very consistent and my jaw was so tight my ears hurt. I was relaxed. This constant underlying tension seems like it is my new "relaxed", and I am not sure how I feel about that. On one hand how can you be a yogic goddess who breezes through life when your daughter has been in the hospital for almost five months? On the other hand, this state of perpetual tension and flight or flight mode is not doing anyone any good. Its not helping Mira, John or especially me. So I looked at Pow and I felt the warm coziness of our heating blanket and slowly sipped my coffee and I felt a little release, a little relief.
You wouldn't know from that paragraph that Mira is actually doing pretty well. Besides some problems with feedings and some pretty major teething, she is getting stronger and is a happy baby!
There have been just a few issues in the past few weeks she has had to deal with. We knew from the very beginning that she would have issues with feedings. Despite me imagining she might be the one and only baby with horrible oral aversion to just magically take a bottle, she didn't even get that far. After weeks of trying to feed her gut through her NG tube (a tube through her nose down into her belly), the doctors decided she was throwing up too much (sometimes dozens of times a day) and not gaining enough weight. They put her back on her NJ feedings, and despite John and I being against this, we admit she is happier and A LOT less sick! And of course that makes us happy!
Our new hurdle is something a little unexpected! Its the dreaded teething! I knew Mira was starting to teeth around 4 months, although the doctors were hesitant to agree because of how young she is.There is no denying that is what she is going through now....Despite her oral aversion she is eating her hand like its the tastiest treat in the world. In fact, she gnaws on that poor hand so fervently, she ends up gagging herself and starts a downward spiral of gagging, crying and chewing.
The past week has been pretty intense with crying meltdowns that can last 2-3 hours. I imagine if she were my healthy heart baby, I would simply feel horrible that she was feeling so badly, and I would rock her to sleep as best I could. However, seeing as she is a HLHS kiddo who is still in her inter-stage (which means she is between her 1st and 2nd surgeries) her crying means a lot more. Put simply, it means we cannot allow her to cry for long periods of time, it means we have to stop her from getting too worked up, it means the whole time she is unhappy we are doing everything humanly possible to comfort her while we stare at her heart rate and renal numbers. From the very first time one of our nurses explained why she couldn't afford to get upset-that babies who are in interstage have had heart attacks because of a crying fit-it has been imprinted in my head like a commandment. Thou shall not let Mira get upset!!
Needless to say this teething business has thrown us all for a loop....We have been doing our best, but there have been quite a few times we have had to give Mira an extra or earlier dose of her valium. One thing that has been both such a wonderful delight and at times scary and frustrating is the way Mira never does anything the "normal" way! From the very beginning she has surprised all of us, and wouldn't you know it the teeth she is cutting are her bottom "bull dog" teeth and not her two middle ones. So she will soon have two little teeth- one on her bottom left and one on her bottom right side.....
All of this-the teething, the feeding-feels like just a precursor to what is coming next. I am sure subconsicously that is why I can't stop clenching my jaw. Mira's next surgery. What I wouldn't give to be in a different situation, to have a different Congenital Defect that meant all we were doing right now is trying to get Mira healthy so that she could come home and put this all behind her. However, what we are trying to do now is get her healthy and at a good weight so that she is strong and ready for her second surgery.
The Glenn is a surgery that most Hypoplastic kids need to have. I know I've mentioned it on here before, but if you wanted to know more or have it explained better, here is a link-
Mira will have to go under the knife again. She will have to have her newly healed scar reopened for another open heart surgery. She will be put back on the heart and lung machine. She will come back on pain meds, with drainage tubes and a catheter. The Glenn surgery also produces horrible headaches for the babies because of the new circulation the procedure creates. The headaches normally don't go away for a few weeks to a few months.The thought of seeing her in pain again just makes me want to run.
There are a few things that keep me going. One-she HAS to have this surgery. The way her heart was rerouted with her first surgery-the Norwood- is unsustainable. As she grows, the shunt she has will eventually no longer provide the amount of blood flow she needs for her size. Another reassuring (if that last part is considered reassuring) aspect of the surgery is NORMALLY it is considerably less intense than the Norwood-for instance most kids come back with their chests closed and off the breathing tubes. I say normally in a very loose sense, because c'mon this is our Mira! She is not normal-and I mean this in a very good way-and so I will not surprised if she goes about things in her own way.
So our time with Mira has been just wonderful-she is learning so much and really growing. She has been able to start reaching and holding things and her head strength is improving a lot! We are really starting to see her personality break through! She is quite an intense and serious baby who likes to study all of her toys and mobiles-I think we've got a real thinker here! Although, that doesn't mean she isn't smiley-she loves funny sounds we make with our mouths and when she is content and alone, we often come in to see her smiling and waving her arms at her toys.
However, even as I spend all this wonderful time with Mira the black cloud of the surgery is hanging over my head. The surgery that we need to get through to take her home (and God do we want to have that happen soon! We love our nurses so very much and will miss them terribly, but the actual hospital is grinding us down. We can't wait to be out of there!) is also the surgery that will put her life at risk again and require another major recuperation. I think its the worst catch 22 I have ever encountered.
The doctors are waiting on Mira to gain a little bit of weight, but we have been told they think she will be ready for her surgery toward the end of this month and certainly before Easter. As far as recovery time, we have no idea! Some kids who have had Glenns go home within a week. Mira will have to recuperate and heal and then have a minor surgery to put in a G-tube (a feeding tube), and the doctors anticipate that being about 2 weeks after the Glenn. So there is the timeline-a very rocky and uncertain one!
One thing I will say-I have seen how much stronger Mira is since her last surgery. She has come back from procedures that the doctors thought she would have a hard time with like it was no big deal! She had a cardiac cath and instead of needing the breathing tube for a week like her anesthesiologist predicted, she came back to the room extubated. I think this surgery is going to go well and be a lot easier on her!
We will keep everyone updated on any dates we get or any new information!
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