Gracelyn's battle~ the rest of her hospital stay

In the previous post I covered all of last week to Saturday, the 13th.
When I left off at Saturday she had lifted the corners of her mouth slightly at Dr. Mo! I didn't mention before, while she was receiving the medication on Friday, Dr. Mo told me that the botulism doctor in CA had told him that in some cases the parents had seen some type of facial expression on the second day after the injection, which would be Sunday. We noticed the smile on the next day!
A side note about Dr. Gesseroun, or Dr. Mo... we L.O.V.E. him! LOVE HIM! We found out Saturday that he was actually supposed to be out of town last week and the doctor that took over the weekly rounds on Monday was intended to be there instead. Dr. Mo had treated botulism before while Dr. Gormley hadn't. We knew that God had placed him there to save our baby girl. We also found out that Dr. Mo would be going off duty on Monday and a new doc would be there this week. Dr. Gormley was great, don't get me wrong, but we love Dr. Mo. He was her first doctor and had treated her and loved on her and she knew his voice and face and loved him too! When he first diagnosed her I asked what the chances were that she would be out by Easter. He said no likely but looked at me with a puzzled expression. I explained that after 3 boys, she was my first girl and this was her first Easter and I had an awesome dress and custom made bow for her! He laughed and said that she could dress up in a clown costume for all he cared, as long as she was in that bed. So on Sunday, as his bon voyage, I dressed Gracie up...

I had her covered with a blanket and as he walked in, I pulled it off to reveal her ensemble. He laughed so hard and asked if it was okay to take her picture. We said yes and he told us that there was a good chance of her picture ending up in a slide deck for a lecture! She will be the famous hula/botulism baby!

*Since Thursday morning, however you laid her head, that is where it stayed and her eyes were still dilated, not reacting and she wasn't able to open them much. Sunday brought more success! She was still smiling slightly (only here and there but it was so exciting!), turning her head about 45 degrees, actually raising her arms to her head, lightly gripping objects and opening her eyes a bit more than she had been able to! It was obviously more that what we had ever planned at that point in time, having been told that the smile within the first 2 days post IV medication would possibly be all the progress for the next week and a half.
*Monday morning showed even more improvement!!! She was moving her arms more and more, actually able to suck lightly on her pacifier (which she hadn't been able to do at all since the Monday before,) her eyes were finally reacting (a little, but it was still something!) and smiling all the time!!!! This was HUGE and left me speechless. We still were worried about her GI tract. The last 3 days they had given her an enema each day and still no bowel movement.

reading her new princess book with mimi!

The number of posts and messages to me on Facebook, emails, phone calls, visits, were and still are keeping me going. I have felt such an array of emotion during this past week, everything from helplessness, fear, worry, guilt (it wasn't that she didn't want to eat that Tuesday and Wednesday, she couldn't eat, she couldn't suck so I was starving her-That is a big one and I will battle that for a very long time.) Once she started turning around, obviously I still had fear because she was still sick but most emotions turned positive. We have such a great support system from our amazing church family to our own family and friends and my mom's church that I grew up in. It overwhelms me, in a good way! I feel so blessed and literally feel like my heart could burst from the love I feel for so many.

*Tuesday brought even more great news!! Gracelyn turned 5 months old and was being moved out of PICU!!!!!! She also got her oxygen taken off and had a bowel movement! Her progress left the doctors speechless!

5 months old!!!

I haven't mentioned yet how much attention Gracelyn has been given and not just for being adorable. Infant botulism is an extremely rare case and this being a teaching hospital, the staff is giddy at the opportunity to see it up close! Many many med students have come in and asked each day to examine her so they could present her to their residents. I oblige without pausing because the more of these students that research and know it, the better chance that babies that come in with it can be diagnosed quickly without ended up on a ventilator. The CDC calls daily, wanting to know updates. The doctor in CA from whom we obtained the medicine calls daily to check on her. And the Poison Control Center stops in as well as calls to see how she is progressing. All three will begin calling me once we go home.

*Wednesday was yet another fantastic day! The speech therapist came and discovered that Gracelyn had her gag reflex back!!!! That prompted the doctor to order a swallow test to see how she did and to see if her feeding tube could finally be moved up to her tummy and out of her intestines. Her eyes were less dilated but still not reacting much at all. The childlife department brought her a swing which made her a happy girl!! She also began working with PT to work on those muscles. Since she came she has been weak and limp, much like a newborn.

decked out for St. Patty's day!!

*Thursday was a big day, the swallow study! It had been exactly one week that Gracelyn was brought in (via ambulance) not knowing what was wrong with her until close to 8pm that day. A brain tumor had been suggested, thankfully that was dismissed after the CT scan. It had been a very big week, full of scares and yet so much progress! My baby was smiling and interacting and possibly about to drink a bottle if she passed her test. I was crying yet again. I cry daily and several times a day. The reasons have of course changed as she has began to improve. I am overwhelmed at the glory of our God. He is AWESOME!
Just as Gracie has surpassed every milestone in record time, she passed her swallow study!!! Her feeding tube was pulled up 7cm to her tummy and she was offered a 3.5oz bottle, which she had to drink in 30 minutes or they would put it in her tube, however, she chugged in 11 minutes!!! She is unstoppable!

chugging her first bottle!

and very happy after!

*As of Friday, her eyes are less dilated and almost reacting normally! She actually nursed for the first time since the Monday before last and did well!!!!!!!!!!! She is just very weak and cannot strictly nurse, only twice a day with bottle feedings in between.

*The doctor came in today, Saturday, one week and one day after her receiving the medicine, and said that it looks very good for her to go home TOMORROW! Tomorrow, tomorrow, one week and 2 days post globulin! That is HUGE and all thanks and praise must be given to God!
The botulism center in CA faxed a lot of information on, not only botulism, but the globulin that she received. It's only been available for a very short time so before it patients' stays were lasting months because the toxin just took over the entire body. I realize the huge strides in medicine these days but I give the glory to God for Gracelyn's amazing and miraculous recovery. How could I not? How could someone not believe in miracles? I know I do!