Sunday, August 9, 2009

It's a long one folks, don't say I didn't warn ya!

Well, it has been awhile. Alot has happened, and many of you know the story, and some don't, so for those who have yet to be aware of what has been going on with us, here goes.
We had planned on taking Bailey to church for the first time on Sunday morning July 5th, when she woke just before 6 am with a fever. We tried to cool her down and determine what it was from for nearly 2 hours, taking her temp, monitering her, trying to nurse (which she wouldn't do). She acted like her belly hurt, and maybe needed to poop, but we weren't sure. Finally, we took her temp one last time and it read 101.8. That was it, and we took her in.
We entered Dublin Methodist ER around 9 am, they looked her over and decided we would be better just to head for Children's Hosp, as they are better equipped for such a little one. They called ahead, and we meet them in the ER here. They took blood and urine samples right away to be cultured, and attempted to do a spinal tap to test her spinal fluid as well, but got only a little bit of blood. Began anti-biotics right away, b/c with babies so little, you can't wait around for test results to begin treating. After all that (several hours) we were admitted and put on the 6th floor, infectious diseases, b/c we did not know what we were dealing with. The remainder of the evening and over night, we were treating her fever with tylenol and continued antibitocs, and giving fluids to hydrate. Each time the tylenol would begin to wear off, her fever would spike higher than before, staying between 102 and going as high as 104.2 She was so miserable the whole night, whining and grunting in pain. It was a very long night and things did not get better in the morning. We had seen that she began to swell, and what we were learning is that whatever this infection that we were fighting was, was causing her blood vessels to leak. And that meant that, like a soaker hose, the fluid still got to where it needed to go, but also that along the way, it was pooling in her lungs, making it harder for her to breathe. That afternoon (Monday) was the worst of my life. We were watching helplessly as Bailey suffered and struggled to take a breath. During the transport from 6th floor to 4th floor, where the PICU was located (Pediatric Intensive Care Unit) I could see her turning purple even up into her belly. It was at that moment I realized that we really may lose her. I couldn't vocalize that to Brian at the time, b/c I was in shock and refused to say it aloud for fear that it might come true. As we sat in the ICU waiting room, I tried not to think about the fact that we had no idea what all was happening to our little girl. During the 2 hours that we were waiting to be able to go back and see Bailey, they had sent up the chaplain, several nurses and a doc to talk with us. They were keeping us updated as they could, but continued to tell us we had to wait. FInally, the doc came out and told us that they had intubated Bailey (breathing tube with machine to breathe for her), set a central line IV in her thigh, filled her with fluids to get her temp down, and completely sedated her and placed a feeding tube in her nose. Basically, Bailey was working so hard to breathe, that her heart rate was up over 200 and the rest of her body was shutting down.
We spent 5 days in the PICU, just working to get her blood pressure to stablize, start feeding her very small amounts of milk directly into her small intestine via the feeding tube (bypassing her tummy so that there would be no danger of regurg and aspirating anything into her lungs) just keeping on the vent to allow her adequate rest to recoop before allowing her to wake up and work at breathing on her own and so forth.
As her BP and temp slowly stabalized, we weened her off of the epinephrin and began to talk about and actively weening her off of the ventilator. Then off of the sedatives and pain meds. Began giving her lasix to get the fluids off of her (she was VERY swollen all over) took out her catheter, and other things I'm sure I am forgetting. There was alot going on! Friday she had a PICC IV line placed in her right arm, which is a long term IV for administering the antibiotics, which allows us to leave the hospital and administer the remaining course ourselves with help of home nurses. Then in the afternoon, the breathing tube came out, and our little girl started waking up and looking around, somewhat groggily. Saturday we moved back up to the 6th floor, and have been working on regaining strength and nursing successfully. As of Wednesday morning, the doctor gave her a clean bill of health, the feeding tube was removed, and we plan on going home Thursday. We and the doctors to this day have no idea what exactly was wrong, all the test results came back negative. Basically we are calling it a septic shock/infection (septic basically refers to an infection of the bloodstream)

Throughout this entire experience, we have seen God move in sooo many ways. We heard from numerous ICU nurses that she was the worst septic case they had seen in a while, and that her recovery in under a week was nothing short of miraculous. They said most babies that sick usually spend 2 or 3 weeks in ICU. This hospital is amazing, we have been amazingly well cared for, and we're thankful everyday for them saving our little girl's life. We met a few parents of other patients, and were so blessed by those new friendships, and equally heartbroken by their stories. And we can't say a big enough thank you to everyone who visited us here, and especially to those who brought meals. To have a community of friends and family who take care of each other like this is a gigantic blessing. To all of you, please know that we are so grateful, and if ever a need like this should arise for any of you (God forbid), we will be the first bearing a ridiculously great meal. We also know that the outcome of this saga would be totally different had it not been for the millions of prayers going up on Bailey's behalf. Prayers from people who have never seen or met this precious little girl. We saw firsthand the fruits of those prayers. So thank you most of all for that.
Mabri did amazingly well, staying with her grandmas, but it was torture to be away from her. It has been time of adjustment for the past couple of weeks, so we ask that your prayers continue for us, the MIllers.
Needless to say, we were glad to se July go. For about 12 days after we got home from the hospital, we had home care nurses coming once a day to check on Bailey and check her PICC line, and we administered IV antibiotics 3 times a day to finish out the 21 day course.
We are now getting adjusted to being a family of 4, and doing well. Mabri loves her little sis, and tries so hard to help her. She is the pacifier police, and the moment that thing pops out, Mabri is on it.
Bailey is doing wonderfully. She is growing and changing so fast, and normalcy is here. She fights sleep like her big sis did and has no problem letting you know when she is unhappy with her squeal. She is my sweet baby girl.
Here are a few pictures for you all to feast you eyes on. These did not load in the order that I wanted, so I hope they don't confuse anyone!






Yes, we were actually sleeping like this!
















Little sis and big sis - little sis not happy!


















After the hospital experience, Mabri was really into "medicine" and apparently Daddy was very ill.










Bailey's ICU room, and all the machines...















Bailey on day 2 of ICU...you can see that she is very swollen, and has the vent tube and feeding tube, and is sedated.







...and Bailey earlier today NOT taking her nap!














...the aftermath of Mabri finger painting earlier today.




















...the result of Mabri finding Mommy's WATERPROOF mascara...right before we were leaving for church.












Mabri in her "bincess" (princess) atire.
 

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