Doozie

Written Feb 10, 2012 9:52am by Amber Gannon Medina

Well, this week was a doozie....

It seems like every time John and I get used to where we are in Mirabelle's recovery, there is something that sideswipes us. It really does keep us on our toes and keeps reminding me that nothing is permanent and this experience is constantly changing. Sometimes that can be for the better, and sometimes for the worse.

We've had a few wonderful weeks with Mira. Seeing her so happy and able to experience life without being in constant pain or doped up all the time has been one of the best feelings I've had since she's been born. We've been able to hold her a lot more, play with her, put her in her bouncy chair and swing, and best of all make her smile! 

When we go through these relatively "easy" periods, and I still feel so stressed and worn out I feel a little confused. Shouldn't I be feeling relieved? Shouldn't this be a time when I am happy and stress free? I think part of it is that I am so low from the huge amounts of stress and worry, that even a few weeks of peace and quiet wouldn't be enough to get me out of that hole. But another part of it is that I forget that our peace and quiet is still filled with a lot of "little" issues and also that feeling that the OTHER SHOE is going to drop.

The little issues we've been dealing with have been mostly food related. Mira has not been fed through her tummy until very recently, so she's been having a really hard time keeping food down. Its pretty horrible to see her perfectly happy and playing and then have a bout out of nowhere. It makes her fairly miserable for a few minutes and then she goes back to her happy self....But it does make for an exhausting day and it definitely keeps me on my toes. The doctors are concerned about her not getting enough nutrition and gaining weight, so there is talk about taking a few steps back and putting her on NJ feeds (the tube that bypasses her stomach and feeds her intestines).

So the other shoe did drop this week. The first foreboding sign was that I got the dreaded stomach flu! If any of you know me, you might know that this is one of my (OK, I have a few) phobias! I hate it with a passion, and I have not had the evil illness since 2006! It was a good run, but any good run has to end-so I woke up early Wednesday morning violently ill, and spent most of the day barely able to move. And so this was the day that Mira had to have a turn for the worse. 

Apparently, poor Mira was attempting to one up me that day and boy did she. John went in to visit her before work (without me this time) like he does every Wednesday and found a completely different Mirabelle....

She had apparently woken up that morning very upset and they had been unable to comfort her. So they gave her Versid. Many times this medication doesn't work for her, so after an hour when she had another episode, they had to give her Morphine. When she didn't respond to that they had to give her Chloral Hydrate. Now this is a baby who hasn't had a PRN in weeks! They realized something had to be wrong.....But because they had given her the Chloral Hydrate (which causes her blood pressure to drop) they had to give her another medication to offset that. By the time John got there, she was completely out of it and on several medications (epi, nor-epi, milrinone, dex and several antibiotics) and he admits he flipped....He said he used to have the stomach for seeing her like that, but had lost it and so seeing her so drugged and out of it was really really hard. It was especially difficult, knowing that just 12 hours earlier we had seen her and she had looked perfectly healthy and happy.

After many lab tests and cultures they discovered she had an infection (most likely in her IV line, which was really old-a relic from her first weeks in the hospital and which is really only supposed to be used for a few weeks at the most. This one was almost 4 months old). 

The whole experience was scary and honestly, not just a little disheartening. It drives home the fact that even when Mira is doing well and is seemingly healthy, she really is just an infection away from losing that stability. An infection can derail her so badly that she takes several gigantic steps backward and we are thrown back into those early weeks with her where all we could do is watch her sleep and try to talk to her through her drugged haze (I have to admit, seeing her really drugged up is really really difficult.....Its like "she" really isn't there). It also is a reminder of what we have to gear ourselves up for-another darn surgery. Intubation, chest tubes, heavy drugs, OPEN heart surgery....Coming our way!

I know many many people endure much greater hardships!  I feel such strong empathy for them, and feel lucky we are able to handle what we are going through. However, I still ask myself how many more days, weeks, months of this can we make it through? I told John I feel like I am a scuba diver that got dropped to the bottom of the ocean with a concrete slab and ordered to walk across the Pacific with it.....Every time I feel like dropping the slab and surfacing, I realize I have nowhere to go! I am in the middle of the ocean! How long can you do this? Where do you get that reserve energy from when you've already used your reserve energy? 

And yet, there are always the blessings. Mira is doing well this morning. She seems to be fighting the infection and slowly coming off some of the medications. And I always thank god that Mira is a fighter-she definitely let us know something was wrong before it got out of control. 

We are so blessed to have the support of everyone (which is where I am certain I get my reserve reserve energy from), including Katie, John's sister, who went and tucked Mira in when I couldn't be with her. Thank you so much Katie. And our friend Jolene, who offered to go check in on her too. I thank you from the bottom of my heart! 

We also had a wonderful visit from our friends Stacy and Rebekah (from Washington State and Washington DC), who flew in to see us and meet Mira AND treat me to a day of pampering. It blew my mind! Thank you so much, you will probably never know how full my heart is thinking about what you did for us and continue to do!

And so there it is.....This new life that we are still trying to get used to. One that is full of blessings and love. One where we also hope things get a little easier (OK, a lot!) soon. And so I guess by the time we get through the worst of it, I will have seen everything you can see of this ocean floor-the good and the bad-and lived to tell the story!