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!

Gracelyn's battle~ the beginning

Thursday, March 11, began the scariest few days for me as a mom.
Tuesday, the 9th, Gracelyn stopped eating. She ate well all of Monday but then Tuesday morning, nothing. I really didn't think anything about it because as a mom of 4, the boys have all gone through those phases. I tried often throughout the day and still couldn't get her to eat. Wednesday came and still she wouldn't eat, but she showed no other symptoms, other than having moments the last 2 days of being inconsolable. I still didn't think much of it because I thought she may be teething. We went to church Wednesday evening and she people watched and interacted with people who gave her attention, like she normally would do. That evening she ran a fever of 102 but since she hadn't eaten anything I wasn't sure if she was able to swallow so I opted not to give her Tylenol. I bathed her instead and her fever eventually broke. Thursday night, sleep was nonexistent, we were up all night long, not even sleeping for a solid 30 minutes. It was bad.
Thursday morning I was preparing the little boys for CDO and getting dressed myself while Gracelyn was propped up on pillows on my bed. Even on nights she doesn't sleep well, she will be awake for a short time before taking a little morning nap so I was alarmed when I looked over and she was sound asleep, completely hunched over. I went over to her and tried to wake her up and noticed she was having difficulty keeping her eyes open, like she was drowsy and her eyes were glassy and not tracking . I was immediately concerned so I took her footed sleeper off and observed her arms just fall onto the bed when I removed them from her sleeves. She was completely limp. I was scared. I loaded the boys and Gracelyn in the car and called the pediatrician. I explained to the nurse what was going on and she asked how quickly I could be there. I told her an hour. I dropped the boys off at church, jumped on the highway, turned on my hazards and prayed and bawled for my baby.
We arrived in exactly one hour and the nurse took one look at her and I could see her concern. The doctor came right in and I could see it in her face too. Gracie's vitals were strong, her abdomen was soft, her eyes were the cause for extreme worry. They tested her blood sugar and it was normal so the only thought was something mental like a tumor or metabolic disorder. At this point I totally lost it. Dr. Bowen called for an ambulance to take us to Children's Hospital so I called Ryan and my mom to meet me there.
Doctors and nurses were waiting for us when we arrived in the ER. They immediately started an IV for fluids because she was dehydrated and then began lots of tests, including a CT scan, spinal tap, blood work and urine tests to see if possibly she had been given any meds by her brothers. After nearly 8 hours in the ER, all the tests came back negative/normal and the doctors were scratching their heads and throwing their hands up as we were moved up to PICU. I was feeling very discouraged, not sure that we were ever going to find out the cause of Gracelyn's sickness, because she certainly was a sick baby. She had laid on the narrow ER bed the entire time, not moving a muscle or uttering a peep, definitely not normal for a baby about to be 5 months old.
In no more than an hour after arriving in the PICU, her doctor, walked in and began examining her. I was on the other side of the room speaking to one of the residents, telling him her story (for about the millionth time) when suddenly Dr. Gesseroun announced that he was pretty sure he knew what was wrong. He told me that she still had her reflexes but all other symptoms pointed to infantile botulism. I was stunned. I quickly told him that she is a strictly breastfed baby and had never had honey or raw meat. He said she could contract it other ways and no matter how hard we tried we would probably never know how she got it. He left to go pull up some information for us to read. When he returned and I read the infant botulism article, it certainly did fit what was going on with her. He went over the plan of action and even told us that it may not be botulism and they wouldn't rule anything out and would keep working to find the cause of her illness. He had treated botulism in the past and warned us that it could take 2-10 weeks and would be a very long and bumpy road.
The CDC had to be notified so that we could obtain an immune-globulin IV medication. We found out that a botulism treatment center in CA had the medicine that we needed but it was a race against time before more receptors between nerves and muscles were terminated and she lost control of her lungs! Her face was sunk in, eyes had been affected, she had no gag reflex, no voice, no ability to suck or to turn her head or lift her arms and that is only what we could tell, we didn't know the extent of the damage. The lungs were next in line to be targeted by the toxin. The medicine was scheduled to be flown in Friday morning and we were assured that it would be plenty of time. The doctor reminded us several times that the medicine would simply stop the toxin from destroying any more receptors, it would NOT heal what had already been killed. We understood.
Friday brought another scary day. Gracelyn was declining and at rapid rate. The flight with the medicine was delayed and didn't arrive until evening. By early afternoon she was even weaker than she had been that morning and her arm reflexes were non-existent. At 6PM, she received the BabyBIG globulin intravenously without any allergic reactions so the first goal was met!!! Now we waited to see if she became worse.
It was and has been all about patience and faith.

Gracelyn on Friday as she was waiting for the med to arrive.

Saturday morning and afternoon brought really nothing that we could see, no further damage but no improvements either (which we were prepared for.) That evening her doctor, (Dr. Mo as we lovingly called him because we really do love him and he loves her!) came in to see her. She was asleep on my chest and when she heard his voice she woke up and I turned her to face him. She looked up at him and the corners of her mouth raised slightly! HOORAY! The first sign of what was yet to come! Dr. Mo and I hugged and I of course bawled! It was a awesome and that night I literally fell to my knees as I had several times in the past 3 days.

happenings...

I think the fact of posting pics of Gracelyn's 4th months a half a month later tells how crazy things are...
~Ryan's job is going well, finally. He is no longer working for CoachesAid! That is a HUGE praise! He now is the manager of a website design company, 9 Collective and CoachesAid is one of their clients. His work hours have smoothed out and he is actually HOME most nights now, except for teaching the night class at the local university and leading Brandon's cub scout group. It's great to be able to hang out as a family and enjoy each other!
~Brandon is loving school and excelling at reading! He participates in the Accelerated Reading program at school and each 9 weeks he scores at least 50 extra points which awards him ice cream and reading the announcements to the entire school! He LOVES that!! He and Ryan and some other fathers and sons are planning a camping trip over Spring Break and then he wants another camping birthday party in April when he turns E-I-G-H-T! (WOW!)
~Blaine right now is undergoing testing because of stuttering. It has become increasingly worse and has affected his desire to talk to anyone who isn't family. He has been testing through the local public school for a few weeks, which offers speech for free but also has several cons. So we are looking into a speech therapist in the next town that we actually know and comes highly recommended. It really hurts my heart to see Blaine so affected by this so we are anxious to get him started! In other news about him, he must be going through a growth spurt because he is eating as much as Britton and that is A LOT!! He still LOVES the Wiggles and will bust out in a Wiggles tune at any time of the day.
~Now to Britton, oh boy! Ryan and I have to remind ourselves that Britton really is only 2. He tells us "no" and "mine" and does the "normal" 2 year old things while only weighing 1 pound less than big brother Blaine. He's become Mr. Personality though with funny facial expressions and really talking and enunciating his words. That doesn't mean that others understand him but Ryan and I do quite a bit. He looks at us with his big dark eyes and my heart melts!
~Gracelyn, I mentioned in the post below, she is still our little angel and we love her so very much. Britton is her biggest fan and she is his! It really is so sweet!
I believe I mentioned my health issues a while back and the fact that I wasn't absorbing the oral iron tablets so in turn my hemoglobin levels were not good. We have been so blessed by so many praying and our Sunday School class even made meals to freeze. It was so so so thoughtful. At Gracelyn's 4 month well check I had a CBC run and my hemoglobin level was higher than it's been in YEARS, I'm talking about since before Brandon! It was just above 10!!!
So that's Kelley news in a nutshell (sorta!) I really hope to stay on top of the blog and even start on Gracelyn's scrapbook, I'm only 4 months behind!

4 months down

~4 months old~

By now Gracelyn is 4 1/2 months and still such a joy!! To say she is spoiled would be an understatement. She loves to be held, cuddled, rocked, sang to, talked to and even has started mimicking the word "hi!" I will have to get a better video of it because the one I took also has the boys fighting in the background. She doesn't care for tummy time at.all. But I am still trying to warm her up to it. At her 4 month well-check she weighed 16lbs and was 26 3/4" long, which puts her in the 95th percentile!! We were given the okay to start cereal but I don't start my kiddos til around 6 months so we will just continue nursing, which is going amazingly well, just look at her stats!!

3 months, 3 days

pretty princess
3 months, 8 days old

she tolerates tummy-time for only about 5 minutes

snuggly warm for the snow
3 months, 13 days

ready for church
3 months, 15 days

hip chick
3 months, 22 days

4 months and showing some skin