Day 4

4:46pm- I got a 2 minute break today from holding Grayson, just long enough to brush my teeth and change shirts. I'm still in PJ pants and glasses. He won’t let me put him down anywhere. Chris is holding him now, but only with my PJ shirt from this morning wrapped around him. Good Grief! Chris said he thinks the Dr forgot to cut the cord when he came out….He’s definitely attatched to momma!!! Kaylee and Brayden just got home. Kaylee had a million questions about his scar. She wants to know how long until she can kiss his head again. Brayden just asked “what is that?” and after I explained it was a big boo-boo, he rubbed Grayson’s arm and said “It’s OK li’l buddy” Too cute.

Each day gets easier. I know he is in a lot of pain, or uncomfortableness (is that a word? today it is anyways) so I try not to let it bother me. Especially knowing that it's my last child, I am loving the cuddleness that he shows. He won't sleep in his pack n play, he will only sleep next to me. I guess I should feel honored, but at the same time, I need a good nights sleep for once. I'm exhausted. What happened to his 6 hour block at night? He is only going about 4 hours now! So, I'm up feeding him 2x per night now. I am so tired in the mornings, Kaylee pretty much gets everything that Brayden needs and plays "mommy" to him while I doze on and off from the couch. I'm so thankful for her, but I also feel bad that I don't have the energy to do anything. I can't wait to get back to the gym either, but that will have to wait until Grayson gets his helmet on.

Discharge Day!

8:30am- Grayson got his last blood draw just now. They’re gonna check his blood counts and then we’re discharged. I’m gonna shower and start packing up.

10:55am- We are officially discharged. Grayson got his IV’s out. I picked up 14 bottles of my frozen milk from the milk bank, and as soon as he’s done eating, we will be heading out. I’m gonna stop by Target and get him a BUMBO chair. I think he’ll really like that since we found out he can’t stand the bouncy chair or swing anymore because of his head. We brought an outfit with a hood so we didn't have a bunch of stares from strangers as we leave.


7:36pm- We’re home! Grayson’s fussy, and I can’t seem to find a way to get him comfortable except in my arms. He didn’t want in his crib, the pack n play, the bumbo chair, nothing! It’s gonna be a fun few days if he won’t let me put him down…


I love that face! He is such a pouter..... (wonder where he gets that from....hehehe)

My kids come home tomorrow. Chris is picking them up on his way home from work. I miss them terribly and can't wait to give them a big hug.

Day 2 of my emotional roller coaster

4:01am- Grayson is back to his normal schedule, he has given us his usual 5 hour block of sleep tonight. He is feeding now and he didn’t cry when Chris picked him up and carried him to the couch to me. His last dose of Tylenol was all the way back at 10:00 p.m. so it has been a while since he had some. He is also peeing well, he fills up his diaper like normal.

4:49am- He had an excellent feeding. First time he has taken both sides since surgery. He got some tylenol and went back to sleep. I’m a very happy momma. His left eye is swollen shut, which is normal, but overall, he looks really good.

9:34am- I’m holding Grayson now. We had a good night. Dr came in this morning and took off his bandages. The incision looks really good. It looks like an “S” across the top of his head. The back of his head is very soft. They brought him a mobile and a bouncy seat to use while we are here. We just gave him a sponge bath and cleaned him up a bit. When he is awake, he coos and flirts with the nurses. They are totally smitten with him. His left eye is now black and bruised. His first black eye! We’re bored, but we are going home tomorrow at least. I’m gonna try and get in a few naps today since I know my other 2 monsters won’t let me sleep much once they get home.


3:14pm- Grayson loves watching NASCAR…go figure. We moved his crib to right in front of the TV so he could see it closer, and he is reaching out to try and grab the cars…like it’s 3D or something.It’s really a funny sight to see. His appetite is back in full force. He’s draining me every time. Yay me!

3:48pm- Grayson got a little fussy and he’s not due for tylenol yet. He’s fed, burped, changed….so we went for a walk up and down the hall. He looked at all the lights in the ceiling and all the artwork in the halls. His 4 favorites were the T-rex dinosaur, dog, cat, and flower basket paintings. He fell asleep on my shoulder on the way back to the room, so he’s content.

I've had a few people ask me how I have stayed so strong through this all.....Yeah right! I certainly don't feel like I have. I'm a mess. I can't think straight. I cry every time I look at him. As I nurse him, I just drip tears constantly all over him. I feel like I'm back to post partum again. I am soo not strong! I'm just good at putting up a front so people don't see my true emotions. I hate it when people see me cry. I'm almost man-like there. I feel like a baby if people see me cry, so the only person that I allow is Chris...unless you've happened to catch me in the heat of an emotional breakdown. I am very emotional, but I try not to be. I just keep thinking "Did I do something to cause this?" "Was it the chiropractor adjustments that I had while pregnant?" "Was is my spin classes, or my workout routine?" etc....I know it is sporadic, and we probably just drew the short straw, but I keep thinking it's my fault. I can tell you this, I AM DONE HAVING KIDS!!! I can't go through another c-section, and I definitely can't handle my kids going through anything like this. This is the hardest thing I have EVER had to deal with. No mother should ever see her children in pain like this.

I keep thinking of moms who have lost young children, or their children have life threatening illnesses like cancer, and such..... and my heart just breaks for them. I have always said "God will only give you what he knows you can handle" and even though I don't think I can handle this, He obviously knows something I don't. I am so thankful to Him for bringing my baby back safely, but on the other hand, I keep thinking why does he take some children so young? I know it's because he needed them for something very important up in Heaven, but still, my heart breaks for them! And how is it that these children are so strong? Grayson went from morphine on day 1 to Tylenol on day 2. Tylenol doesn't even work when I have a headache...how could it be working so well for him?

Recovery! 1 day post-op

10:20am- I got 7 hours of peaceful sleep last night. Stayed at Randy’s, took a shower with his pressure washer shower. LOVED it. Grayson is doing better. Still not eating well, in lots of pain still. About to try and feed him again. Drs’ think he is doing better today. He was watching nature TV when we arrived, it was really cute.


12:46pm- Breastfed Grayson for a few minutes. He latched right on, but didn’t want too much. I think it hurts to swallow from the tracheal tube thingy he had in during the operation. He is in a private room now. Got his oxygen tube taken off, and all his vitals monitors are removed. He only has his IVs in for now and is still on the saline drip until he eats more. They will probably take his bandages off tomorrow. He’s off Morphine, and only on Tylenol now. I get a food tray now too, since I am breastfeeding, and Chris’ president of his company brought us some lunch since he lives nearby. Very appreciative of that.

2:56pm- Grayson has eaten 3 times today so far. We’re about to take a nap since he is sleeping. He still screams anytime his head is moved. I know he’s in a lot of pain, but he is only given Tylenol. But, he’s awake quite a bit and not sleeping the whole day away.

6:25pm- Grayson is eating much better and making improvements at each feeding. He is nursing for about 5-10 minutes, and then I pump out the leftovers (about 2.5-3oz) and he bottle feeds on that. He is wanting to eat about every 2-3 hours. He kicked his foot and tore the tape off his IV so he cried in pain when that happened. Nurse came in and taped it back down, and took out his saline drip. So, he only has the IV leads in, but he is not hooked up to anything anymore. He eats better out of a bottle at the time, because we feed him while he is laying on his pillow. When he nurses, I think it puts too much pressure on his head and he hurts after a few minutes. Plus, it’s more work, and he’s just plain worn out. My supply is hurting a little bit, but I am still getting out more than what he is taking at each feeding, so I’m not upset about it. I’m just keeping up the pumping after each feeding and hoping to get it back to where it was by the time he needs more. I have faith in my body. It hasn’t ever failed me yet with him. He looks so peaceful while he sleeps. I miss my older kids though. I called Mimi's house to talk to them and Brayden informed me that he was playing….playing with what???, I said. His tallywacker…. OMG! BOYS!!!

10:32pm- We're about to head to bed. I just finished nursing Grayson. The nurse helped me get him in a good position without hurting his head. She's wonderful and so helpful!

8/8/08 The BEST and WORST day of my life

Friday morning: 5:45am- we arrived at the hospital surgery admissions dept a tad bit early. We're supposed to be there at 6am. We decided to snap a few pics of Grayson before surgery.


6:00am- we are being checked into the surgery admissions dept. He weighed 11 pounds even this morning!!!

6:15am- we head back to the surgery admission waiting room where they give us a gown for Grayson to put on. He's not too happy about it. He also hasn't eaten in over 4 hours. He doesn't understand why Mommy won't feed him when he is hungry.

8:15am- still waiting in the waiting room with Grayson. The surgeon/anesthesiologist and nurse just told us all about the procedure and how it would take place.

8:30am- I just handed Grayson off to the surgeon team and they took my baby to the operating room. I'm a freaking wreck, I've been crying like crazy. I just pray that he gets returned back to me safely and with no lasting effects. This is by far the hardest thing I have had to do in my entire life! I handed off my child to a surgeon to be cut open! This is sooo unfair. No child should have to go through this. Especially one so young. We're heading to the waiting room where we have some family waiting for us. I need to get some breakfast in me before I vomit from my nerves wrecking my tummy. Then, I need to go pump...I'm so full, I'm hurting!

10:27am-IVs are in, anesthesia working, and they’re starting surgery now. Next update will be at 11:15

12:04pm- They’re stitching him up. Didn’t lose much blood, which is good. Dr. will be out in 30 minutes for update.

12:22pm- Surgery went well. Took a little longer because the skull had also fused in the front. Only took 2 oz of blood. Next 24 hours in ICU. Good

1:21pm- just left to go see Grayson in post-op. Should be a little swelling, but otherwise doing well. We saw him briefly and he is swollen and cried when he saw us. I thought handing him off was the hard part. NOPE! Seeing him in recovery....I think I cried almost a gallon of tears. He was pale white from the blood loss. He looked very bruised. His skin had a purple tint to it. He was in pain, looking at me, crying out with this awful look on his face like "mommy, why don't you take the pain away". His cry was more like a sheep "aaah" and it was very weak, from the tube that was down his throat. He was confused, disoriented, and in lots of pain. They gave him his first dose of morphine while we were there. They kept his hair for me that they had to shave. It was in a biohazard bag. (I guess that was all they had) He had oxygen blowing on him and was hooked up to what seemed like a million cords.

2:39pm- Grayson is in ICU getting adjusted to his bed. We will get to see him again shortly and feed him.

6:13pm- Got to hold Grayson for a few hours. every time he moves, he cries. he’s in a lot of pain. not really eating, just sleeping. I’m tired. Maybe I’ll sleep more than 3 hours tonight??

7:26pm- Briefly fed Grayson…ok, so I was really just his pacifier but he did get a little milk. They took his catheter out and finally got some size one diapers. (they had him in a newborn size and he almost busted out) he is sleeping and quiet right now in mommy’s arms.

8:29pm- Grayson is sleeping peacefully. He can lay on the back of his head now…I wonder if he realizes it yet. I keep singing "You are my Sunshine" to him. That's his song from Mommy.

10:30pm- We're heading to our brother-in-laws house about 5 minutes away to crash for the night. I'm exhausted and my eyes burn from lack of sleep and too much crying.

Surgery Re-scheduled

Grayson's surgery was moved from Thursday (8/7/08) to Friday (8/8/08) due to hurricane Edouard possibly making landfall tomorrow.

We'll keep you all posted on his status on Friday through out the day as we know more.

We don't have an exact time yet for his surgery. The nurse said there is a surgery in the morning already on that day, so it will probably be late morning/afternoon.

8 is our family's lucky number, so we believe the date of his surgery will bring us good things and positive results! (Kind of ironic that it takes place on that day due to an "act of God" delaying it)

What is Craniosynostosis?

Wikipedia's definition: Craniosynostosis,(′krā·nē·ō′sin·i′stō·ses), is a medical condition in which some or all of the sutures in the skull of an infant or child close too early, causing problems with normal brain and skull growth. It can result in craniostenosis, which is the skull deformity caused by the premature closure of the cranial sutures. Also intracranial pressure can be increased.


Often confused with skull deformation due to birth or sleeping position (positional plagiocephaly), craniosynostosis is a permanent cranial deformation, and the only way to fix it is through surgery. Although there are several theories about the cause of this condition, research has shown that the deformation is sporadic.

When a baby is born, the skull is divided up into different segments, and each segment contains sutures that will ultimately fuse together as a child gets older.
But when a baby is born with craniosynostosis, one or multiple sutures fuse together too early, leaving the brain little or no room to grow. The brain must push its way in a different direction, which most often causes cranial distortion and pain.
If a child waits too long or never receives treatment, the child can be susceptible to physical and developmental problems.

Scaphocephaly (Grayson's type) involves fusion of the sagittal suture. This sutures runs from front to back starting at the fontanel, at the top of the head, and extends backwards along the middle of the skull to the back of the head. Often the fontanel, or soft spot, is absent or closed. A ridge can be seen, or felt, running along the top of the head in between the right and left half of the skull. When viewed from above, the skull is wider near the forehead and gets narrower towards the back of the skull (which is the opposite of what is normal: that is, the back of the skull should be wider than the front). When looking straight on at the child's face, the forehead seems quite big, or prominent, and the sides of the skull look narrow. Often described as resembling a football or a boat.

The incidence of scaphocephaly is one in 2,000 births. It is the most common form of craniosynostosis. Almost all children affected with scaphocephaly require surgical treatment.

Surgery is typically used to separate the fused sutures of the skull as well as to reshape the skull. Typical surgery begins with a zigzag incision from ear to ear across the top of the head. The scar left by this type of incision makes the hair look more natural than that left by a straight incision would.
Next, a strip of skull is removed along the sagittal suture line. Grayson also had to have a strip of skull removed along the lambdoid suture. So, his strip removal resembled an upside down "Y" shape. He also had some endoscopic cuts made on the side of his skull to "fan" it out so it would widen the back. The skull is then reshaped and held together by dissolvable stitches. Finally, the incision is closed by disolvable stitches and the head is wrapped in dressing and gauze.