Our amazing Grace and her miraculous story of survival!

previous title, Wow, sweet baby Grace will be four tomorrow!

So many thoughts and emotions ran through my heart and head when I wrote todays title. What an awesome journey that Chris and I are blessed to be a part of. So here is the story of Grace Marie's incredible birth!

Chris and I had deep convicted feeling about keeping the possible baby names to ourselves only when we were expecting Grace. We always felt peace in knowing that when we looked upon our child's face for the very first time we would know. Oh, yes, I knew! It was the briefest of all moments but I knew that she was our Grace Marie.

I believe that God reveals Himself at the perfect moments and in his Utmost Highest ways when we need Him most, and, do we not need it most, when we feel that we have all things, moving the way that they should be, albeit sometimes slow, with detours or blazing fast moments but with no surprise twists or turns. Well, this is how I felt the morning of July 16th, 2005.

Chris and I just moved into our new home, our current home, the weekend of July 1st. So yes, we were unpacking and doing all those things. I woke up that beautiful and hot Saturday morning and tried to once again get into the mood to unpack and organize. It was futile, I just wanted to go shopping. So I headed down to my favorite store, The Container store, to get some all important things, right, to organize the house better! I remember thinking that our sweet little one was not moving very much that day. I usually awoke to her kicking and I absolutely loved to lay in bed on my side and enjoy feeling her moving. I do not recall her moving that morning and then I did not feel her moved the 35 miles down GA-400 to the store. A mental note that I put in the back of my head.

Well, of course I had an amazing time finding all the things that I needed. Then I decided to head to Sam's club and get some Dreft and other things before it got to hot and before I got any bigger to lift these things. Once again I did not feel our little one moving. I bought some lemonaide and a lemon cake so I could do a sweet/kick test when I got home (well okay they just looked good and I wanted them). Still no movement so once we got everything in the house, Chris went back to painting the nursery, yellow, and I sat down to read my book about kick counts. I felt that our baby was probably getting bigger and that is why I did not feel much however, I felt that I needed to make sure. I drank the lemonaide and ate a piece of that lemon cake. Ugh, it was all so sweet that had to make anyone move. Well, I got two or three very soft movements in 45 minutes. I waited 15 more minutes, nothing, ate and drank some more and then within 30 minutes I got three or four more soft movements. I called my OB's office, and Dr. Soufi, called me back as she was on-call. She told me to come on down and they would put me on the monitor. I went up and told Chris and he was a little covered in paint being that he was painting the ceiling for me!!! He said, do I have time to take a shower, I said oh, yeh, they are just going to put me on the monitor, but make it a quick one.

Now let me explain my mindset here, my mother had five children all vaginally, the fifth was all-natural and all of the babies were born past their due dates, some three weeks past the due dates as my birth was. So of course I just assumed that my child would be born at least a week past my due date which was, August 16th, 2005. I was also planning on a natural delivery. We hired a dula, Penny Gilchrist, and we were just checking things off of our to-do list and moving right along, we thought!

So I grabbed my cell phone and purse and off to Northside we go.(yes, oh, so naive).

Today is November 13, 2009, at 7:30 pm. I want to get this post done for the blog is so therapeutic for me and it will answer many peoples questions without me crying through it! Grace will probably read this one day, so I will finish it now. 


OH, on a side note, the picture below is of Grace in NICU POD A, at N'side Main. She is 3 days old in this picture. She was very sick and it showed in her earlier pictures, so I want to keep those close to my heart and private for now...


Once I am on the monitor we do another sugar/kick test. By this time I never wanted anything sweet to eat, again. She barely moved, they said I was having contractions but I didn't realize it, or feel it. I was not in labor. Her heart rate was very low around 110 when it should of been around 160.

Here is where I get chills because as I type I know that is when God had us all in his arm's, holding us tight against His chest, keeping us from all harm with peace and contentment. 

There was a bad thunderstorm that night which delayed Dr. Soufi in getting to the hospital. Our RN was a traveling RN from California who was actually a mid-wife. She was very attentive to us and knew my faith and desires for a natural delivery. She reached in close to me with so much love and concern letting me know that if I was her patient she would say, your baby is in trouble we need to get her now. Then everything went so fast and effiicient, the blood, the prep, the epi-dural and then Dr. Soufi arrived, and I was rushed into surgery. Now that I have had two c-sections, I realize how fast the first one was, very fast until Grace came out. I will never forget how still and quiet it was, except for all the machines and then Apgar of 1, resusitation, then a while later Apgar of 8, thank you, Jesus, 3 pounds and 13 ounces, 16.5" at 11:42 pm, on July 16th, 2005. I got to see Grace for a second or two and then she was rushed to the NICU. I begged Chris to stay with her and take care of her no matter what. Yes, very dramatic, I know, but excuse me, we did not know why this happened and why she was so small. I was not sure that I would see them again!

 Then a long silence, but so much peace, more peace than I could of imagined. It felt like an eternity before I was brought into recovery. Dr. Soufi and the others kept saying I can't believe how small she is with so much concern. Once in recovery, the Neonatologist checked in with us, gave us her first picture and informed us that she was a very sick little girl.

My body was so tired and stressed that I do not remember much until the next day, Sunday morning, which was the last day of our birthing class when they were going to go over c-sections and if something goes wrong! God's timing is perfect I might have been freaking out if I had that class before, we will never know!

They told me that I could not go see Grace until I got off the epi-dural and could do a couple of others things that I had to do, so I tried hard, did not succeed the first time but was so determined to try again within the hour. Now off to see her. She was so tiny and so swollen and still we could barely see her skin on her face because of the respirator. We could not touch her except to cup her head without moving because any movement would be painful.

Then I got hysterical, once, I was back in my room. I was so swollen everywhere and just kept crying and crying. Every now and then I would hear a baby cry in the rooms next to me, which made me cry too, because my baby was fighting for her life in another area and I couldn't be with her or help her. The doc kept calling me and there were visits trying to get more answers on what was wrong with her from our family history. Everyone was clueless!!! So they just decided to treat her like she had a BAD infection. But her platelets were fatally low, 17,000 to 19,000 and they needed to be at 150,000. After day 3 things were not completely stable due to her platelet counts but they were getting better.

On day 4 at the very last hours that I could stay my blood pressure started to rise. I almost stayed another day but they decided that I was just anxious because I had to leave Grace behind, which I was. It was so awful leaving the hospital, I just cried and cried as we pulled away. We made calls to the NICU checking on her and we continued to get calls on her progress and from the research departments that were still trying to figure out what was wrong and how to correct it.

She got off the respirator and was on the BIPAP and then a CPAP (can't remember the order) and then we gradually got to see her face. Grace was on an IV for the first few days and then went to gavage feeding (through a tube) for a couple of weeks. We finally got to see her eyes open on day 5, she just starred hard into our eyes, constantly! Never moving her gaze away from us. Chris and I cherish these individual moments so much. We eventually got to see her move on her own during the 2nd week and hold her, kangaroo style! Immediately after skin on skin her platelets seemed to stabolize! All in all Grace had to have five platelet transfusions.Then we finally heard her, oh, how beautiful, finally a cry, a sound, anything, it was so wonderful. Oh, how strong sweet baby Grace is! She amazed everyone on how fast she was recovering at this point.

Day 22, Friday late afternoon, we passed the car seat test etc. just waiting to be released. The ride home, she was so tiny that it seemed like she stopped breathing a couple of time in the seat on the way home.

So basically no one ever new why and how. Once she was home it was business as usual except for a few more appointment with the pediatrician due to her small size, just at 5 lbs. All of the physicians left the past in the past and said sometimes we never know. I had a couple of clots in the placenta and the cord was around her neck but she was so tiny that it was not harmful to her, and there was the beginning of placenta abruptio, but that was it. No more anwers to my questions from anyone. Until, I got pregnant with Gabrielle, they immediately, did lots of blood testing. My labs came back positive for Factor V leiden mutation and phospholipid anti-body syndrome. Well, that must be it, what happened with Grace.

What a miracle for Grace and Mommy. Little did we know but I had a 80% chance of dying during my pregnancy, delivery and post-delivery. Amazing Grace and Our incredible Father, saved us both!

I should rename this blog Therapy for Mommy, Grace is perfect and resilient!

Let's see how do I begin. Well, first off, a BIG SHOUT out to my hubby, Chris and woot.com for the free headset, (only $5 s/h). It was definitely needed today for all the return medical calls. The neurologist called me back two minutes after I picked up the girls, so I quickly pulled into the funeral home on Sawnee Dr. and had to get out of the car, too noisy you know! Any way the doc is one of those that really undercuts a dx (diagnosis). For example he would probably say your child is slender not skinny, get the picture?!

So here is what I have so far. Brain scarring (aka, damage, although minor), deep white matter damage, gliosis, so a mild remote injury, or as he stated, 'a lttle injury'. So upon the few questions that I could get to, I pulled out of him, my ? so this in definitely NOT ITW (idiopathic toe-walker), and so this is mild CP (cerebal palsy) and he said and I quote, "yes, you can say that, mild spastic diparesis" or CP. Yes many questions still to come. But on a cell phone in the rain in a funeral home parking lot was not the right time or place. We know enough now to move forward. We will get more questions answered in the next week. Don't worry I will be asking.

We are going to proceed with the protocol that he suggested. Botox injection, 11-18-09 and then about three rounds of hard casting, weekly to increase the flexion in her right leg. Then AFO's (ankle-foot orthodic). Her leg is already in contracture. So we need to get on this STAT to hopefully avoid surgery. Dr. Berensen is not sure on the expectations to give me regarding this, at least he is honest! But I know my God, He can do anything and my sweet baby Grace, and how strong and courageous that she is.

The is new and VERY CHALLENGING territory for me, I must be honest. I have always been the EMT rushing to the emergency, calm cool and collected. I have not done well with long-term care. So yes, I am frightened that I cannot live up to the needs of us all. Okay, that is enough of that.

Here are the high points in my opinion, the white matter can be worked with

"The brain in general (and especially a child's brain) can adapt to white-matter damage by finding alternative routes that bypass the damaged white-matter areas, and can therefore maintain good connections between the various areas of gray matter."http://en.wikipedia.org/wiki/White_matter

So, once again, I am so thankful that Our God gave us the discernment to begin the therapy at A Healing Place, because we have already begun some of that repair and will have more knowledge to tackle the rest, now.

Please spread the word about Factor V Leiden Mutation and phospholipid anti-body syndrome. Think of what can be prevented by spreading the word.

So I must close now. If you are reading this, I do not have anymore to answer or give. I just pray that we continue to hear and honor Our God through all tx (treatments) for Grace, this is surely not a sprint, or a marathon but a lifetime. Please pray that we can train for this and have the perfect words to say to her for all of the moments to come. Oh, and also, very selfishly, please pray that my upcoming test (chest x-ray, CT of the head, and barium swallow) will all come back with out the CA. There is no time for that. Mommy needs to be stronger than ever before! Thanks for listening! Good night!

"Picture Day"

Yes, that is right! What you tell your toddler when they are going for an MRI. I am so thankful for CHOA (Children's Healthcare of Atlanta @ Webb Bridge) and their patience, kindness and CLARITY. Yes, I just love that clarity!! They had some great suggestions on how to 'prepare' your child 'age-appropriately' of course. So knowing our Grace we used the suggestions but tweaked them no not tweet! LOL

So over the weekend we are going to go get your picture done and not go to therapy with Dr. Nova. then Sunday night, your picture is going to let us see inside your brain and your spine, which she thought was cool. Our 'talk' is and has always been in making each of us stronger by taking care of ourselves. There is not something wrong just other's helping us run faster, etc.

The prep beforehand was interesting. I got her up at 4:30 am so she could eat some food. No solids after 5am. Then we went back to bed for about 2 hours (well she did) and then we ate some jello and drank some water. Then NPO (nothing by mouth) after 9am.

I told her that when her pictures were to be taken she would be very still so they could get nice pictures so I let her bring her lovey, blanket, kitty (plush, of course!) and comfy socks and slippers, why not! We almost made it without sedation but it was too confining over her head, which I would have need to be sedated, too! I was very impressed with the courage and trust that our sweet baby Grace displayed today during the IV. She did not hyperventilate, gag or anything. Just crying and lots of sweating (yes, she gets that from Daddy)!! So much sweating that the tape would not hold and none of us wanted her to have another stick, so they got the 'pillow' (splint) to hold her hand in place and lots of tape and a washcloth!! Yes, they did what they needed to do! I love it!!

The sedation was FAST and hard which I will not go into much detail, why, because it is SINGED into my brain, forever! Let me just give you a hint, I never want to see my child's head fall hard into my arms (cradle position) like that again. Oh, how my heart ached. What a scary, vulnerable sight to see. But once again CHOA was there for her but even asked me how Mommy was doing. Mommy was staying strong until I got into the waiting room where I quickly started to text my emotions to my friend. I so needed to do that, it got it out so I could keep my eyes and mind on God and toward the goal.

Another compliment to CHOA, Nurse Tammy and Mr. Vinny! They were so patient and could read my body language and gestures to know what to discuss in front of her and what-not. They also used those great words like hugs, from the BP cuff and pillow instead of splint. So many times medical personnel get cynical and just go through the motions. Well, not at CHOA, they are right there for you knowing and helping you with a first sedation and they are INCREDIBLE. If I ever go back into the medical field I can see myself in this area due to their love, kindness, patient, well I could go on, but I have lots of laundry and stuff to do right!

So the MRI of the brain and L-spine lasted A LOT longer than expected. She moved a bit during the spine portion so they had to adjust her med's and evaluate her. I am grateful that they take their time. Our apt. was at 11a. they came and got us by 11:09 and started MRI attempts without sedation at 12 (right on time) and she was out of the MRI by 2 pm. She awoke with some words and rubs from Nurse Tammy at about 2:15. She was so cute and it warmed my heart that she wanted to see me. Yes, yet again, our children always amaze me!! Her trust did not waver at all for me. In fact it feels stronger, maybe because I went through it with her.

We cannot keep our children from every boo boo or heartbreak but we can be there with them as they go through it with a hand, a hug, guidance and love. Yet, another perfect example of Our loving Father. He is always there with us. We have just got to take a deep breath and realize that he is holding our hand or holding me up!! We were out of there by 2:30.

Grace is doing great. She did not have any nausea or vomiting. We relaxed on the couch for a bit and then played. What a beautiful and purposeful day. Thank you, Lord for going through it with us, yet once again! We count on you oh, so much and are so thankful!!