The Big Day

So, Grayson's surgery has come and gone. My little man was such a champ!!

On May 5 we drove to New Orleans to be there bright and early the next day for Grayson's surgery. Michael and I got almost no sleep that night trying to time Gray's feedings. He could only have clear liquids after midnight and nothing to eat after 3am.

On May 6 we had to be at the hospital at 5am. Thankfully, our hotel was attached to the hospital, and we just had to walk right over. Gray was SO good that morning. He had to be starving, but he just slept in mine and Michael's arms. So many doctors came in and out explaining all the risks of the surgery. It suddenly became real when the first risk on the consent form was DEATH. I had the hardest time signing that form. Thankfully, our plastic surgeon, Dr. St Hilaire came after this and eased my worries. When anesthesia came to take him to his surgery, everybody said their 'see ya later's. I was so mad because I wanted to hug him one more time, but they took him from Michael before I had the chance. Next, came the wait.

Once I sat in the waiting room, I cried for the first time that day. I was so scared! It was comforting that so much of our family was there. After about 2 hours, a nurse told us that they started the procedure (they had to start all his lines and draw his labs before). The actual surgery only lasted about 1 hour. When I saw Dr. St Hilaire and Dr. Bui walking towards us, I knew it was good news. They were both smiling. They said that everything went perfect and he was being woken up.

We had to wait a bit longer on them to wake him, and for him to get settled in the PICU. He did end up having to get 1 blood transfusion during this time.

The first time I saw him in the PICU was a big shock. I had looked at so many pictures of other babies that went through the surgery, but nothing can prepare you to see your son like that. He didn't look or sound like himself. He was already swollen, had so much hair shaved, and was so hoarse from being intubated. My poor man was in so much pain. Thankfully, we had awesome nurses that called the doctor several times to give him extra pain medicine.

I remember being so mad that they shaved so much hair. I know it seems silly. Why be mad about something as minuscule as hair? Especially when it will grow back. With everything that was going on and all the stress of the day, that was just 1 unexpected thing that took me over the edge. They don't ever shave so much hair, and I was not prepared for that.

Anyway, Grayson's 2 day was So much better! He even started cooing for the first time ever! One of the workers brought him a mobile for his crib, and he would spend so much time looking at it and talking to it! He just amazed! Since then, he has only amazed me more.

The first 2 pictures are from the day of his surgery, the second 2 are the next day:

Surgery Date

We met with our cranio facial team last week. The whole experience was a whirlwind! We got to the hospital a little after 8 and were taken into an exam room. We stayed in this room all morning, and the doctors rotated to us. First, we met with our neurosurgeon, Dr. Bui, and cranio facial plastic surgeon, Dr. St. Hilaire. They went over our CT and confirmed that Grayson has complete fusion of his right coronal suture. They explained again the two different surgeries (endoscopic vs. cranial vault reconstruction {cvr}) and the pros and cons of each. Ultimately, we decided that the endoscopic surgery was the safest for Grayson.

The main risk with the surgery is blood loss (which is a lower risk than the cvr surgery). So, Michael donated 2 units of blood before we left. The main draw back to this surgery is that Grayson will have to wear a molding helmet for up to a year after the surgery. We will have to take him to New Orleans every week for a while to adjust the helmet. There is also a possibility (30% chance) that Grayson will need a second surgery in the future. However, Dr. St. Hilaire said that out of his over 70 patients that have had this surgery, zero have needed a second surgery. Sounded like a pretty high success rate to me! He did admit that because Grayson has one side fused it causes an asymmetrical skull (as opposed to symmetry with both sides fused). So, even though he only has to do one incision on one side, it is harder to achieve the best results. We did not mind this because our ultimate goal is to provide room for Grayson's brain to grow (not to achieve the perfectly round head).

We did not choose the cvr surgery because it has a higher risk of blood loss, a longer recovery (with more swelling and more pain), and we would have to wait until he was at least 6 months old for the surgery. The drawback of waiting for the surgery is that it allows more time for the skull to grow and become more asymmetrical and put more pressure on the brain.

After our decision, they scheduled our surgery for May 6th (less than a month away).

Then, we met with a dentist, social worker, geneticist, orthodontist, pediatric ENT, pediatrician, and speech pathologist. Because Grayson is so young, none of them really had much to do. We had a lot of pictures taken of Grayson (his Pfeiffer's and right coronal craniosynostosis are pretty rare) and even some of Michael. They did som bloodwork on Grayson to determine his type of Pfeiffer's. And, we filled out his surgical paperwork. It was really neat how well oiled the day was. Every time one doctor left the room, another came in.

I'm posting some pictures that explain everything better than just reading it. I got these pictures from neurosurgery.ufl.edu. It has some really good information about cranio and a good article on the endoscopic surgery.

The first is of a right coronal fusion and the second is showing what segment of bone is going to be removed. The third picture is showing how the bone is removed during the endo surgery (but on a different suture). The fourth and fifth pictures are of different types of molding helmets (we will be going to Hanger in New Orleans for his helmet). The before and after picture is of an endo repair of left coronal cranio. The last two pictures are showing Grayson's slight asymmetry.

1 Year Gluten Free

So, this March was my 1 year gluten free anniversary. It is hard to believe that I haven't eaten anything with gluten in a whole year (minus a few accidents and possible cross-contaminations)!

The good news for anybody starting out on this journey: it gets easier! I have sort of developed a routine when it comes to grocery shopping and eating out. I have my basics that I get every time (meats, salads, gluten free pasta, vegetables, frozen gluten free meals). We also have our places that we know are safe places to eat (chick-fil-a, five guys, Tabella's, McAllister's). I have also pretty much stopped craving breads. It was difficult for a while in my pregnancy, but I no longer wake up wanting Krystal burgers.

The best news: I feel better! I cannot remember the last time I complained about my stomach! No more crying in the bathroom in pain. I think I have more energy, but I happen to have a 1 month old who steals it.

The hardest part, for me, is still the lack of convenience and variety. I do get tired of eating the same things all the time, but it is so inconvenient to break out Google and look up new foods or places to eat. I think this will only get better with time. Since I have been diagnosed, I have seen my grocery store's GF selection grow tremendously! I am slowly finding more and more new things to try. I think more restaurants will catch up with the GF trend in the future.

1 Month Milestones!

Grayson is 1 month old! I cannot believe how fast this booger is growing! (I wrote this post at 1 month and forgot to publish it!)

Milestones:
- Can pick up head for short periods of time
- Rolls from back to side
- Plenty of gas grins
- Gives big, wet, open mouth kisses
- Loves to suck on his wrist
- Hates baths
- Hates diaper changes
- Weighs 8 pounds 4 ounces!!Wow!!
- 21 inches long
- Wakes once during the night (most nights)
- Sleeps in his crib!! Wahoo!!
- Is pretty much the cutest baby ever!!

Grayson is such a good baby! Poor thing has a Virus right now and an upset tummy! But he is still in a good mood most of the day. I love Baby Wise and getting him on a schedule! It has been a savior as far as getting us some sleep at night, and forcing me to put him in his crib!

I did end up having to supplement my breastfeeding with formula. I tried everything to increase my milk production (fenugreek, Reglan, pumping between feedings, feeding for longer). The doctor thinks that he may not have a great latch because of his facial asymmetry with the craniosynostosis. Whatever the reason, I am just glad to be done STRESSING over making enough milk. Now, I just breastfeed some and pump when he takes a bottle. I hope to keep giving him at least one bottle of breast milk a day until his surgery.

First 2 pictures are at 1 month, second 2 are at birth:

Prayers for Grayson

I have been struggling with whether or not I should post this. I just don't want anybody to feel sorry for us or my Grayson. We couldn't be more thankful for our precious baby and would not change a THING about him! But, I decided that the more people praying for my Grayson, the better!

Grayson has been diagnosed with Pfeiffer syndrome. This is the same genetic disorder that Michael has. We have always been aware that all of our children have a 50% chance of being passed this. The main concern with Pfeiffers is the risk for craniosynostosis. This is when the bones of the skull fuse too soon and do not grow properly making room for the brain.

When Grayson was born, we did notice that he seemed to have a "lazy eye" and a slightly crooked nose. We thought it was all due to his position in the womb. When these didn't get much better, our pediatrician referred us to ENT for his nose and an eye doctor.

When we saw the ENT doctor, he was not at all concerned about his nose (since he has no difficulty breathing). However, I asked him to look at his frontal fontanel (the front soft spot) because it seemed so large to me. He said that it was abnormal and was concerned about it staying large to compensate for possible craniosynostosis. So, he referred us to a Geneticist. However, he couldn't get us in until the end of June.

I heard the word craniosynostosis and was concerned (maybe flipped out a bit, I tend to be a worrier). The thought of waiting until late June to even be seen was not ok with me. Especially considering the geneticist would only refer us to a neurosurgeon, and who knew how long that would take? Thankfully, I work for an awesome neurologist who got me a referral to a pediatric neurosurgeon, Dr. Bui, at Ochsners.

We saw Dr. Bui that next week, and he was awesome! He was the first doctor who we didn't have to explain Pfeiffer syndrome to. He also looked at Grayson and felt his head and knew right away he had craniosynostosis. He believes his right coronal suture is closed and says that the right may be partially closed. He wanted a CT to confirm.

Dr. Bui told us about the different surgery options we have to face. To allow Grayson's skull to grow properly, he will need one of two types of surgery to release his fused suture. If only his right suture is closed, then the surgery we are facing is an endoscopic surgery at 2-3 months of age. They will make one small incision and use a scope with a camera to release the suture line. He will then have to wear a molding helmet for up to a year to help his skull grow correctly. This surgery is the least invasive, and he will only have to stay in the hospital a few days. However, if both sides are fused he will have to have a more invasive surgery that makes an incision from one ear to the other. They do this surgery usually between 6-8 months of age. He didn't tell us much about this surgery and the length of recovery.

We had Grayson's CT performed the other day (he was so good and slept through the whole thing! They said he was he best patient that day!). His pediatrician told us it did show that his right coronal was fused and that there is no internal damage (meaning he has a perfect little brain, just as we already knew). Hopefully this means he will only need the endoscopic surgery. We go back to Ochsner on April 10th to meet with the cranio-facial team of doctors and discuss surgery. I'm really hoping to get good news!

Please pray for my Grayson and his team of doctors (and my sanity)!

2 Weeks!

So, we have been home with Grayson for about 2 weeks now.  These 2 weeks have gone by so fast!!  I want everything to slow down, because I know one day I am going to wake up and he is going to be starting daycare.  I am dreading that day already!

Anyway, these 2 weeks have been some of the most rewarding (and hardest) days of my life!! Taking care of a newborn is hard business.  The first few days were spent memorizing every detail of his perfect little face, learning how to breastfeed, figuring out when he was hungry, and functioning on little-to-no sleep.  Some of the challenges of the first 2 weeks have been:

Breastfeeding: I remember how excited I felt when he actually latched on for the first time (you would think this would be a lot easier than it actually is)!  Later, I learned that this latch caused a great deal of pain (don't listen to the books that say it doesn't hurt if the latch is correct; it DOES hurt for a few days until your nipples adjust).  This got MUCH better after the first week though (TMI, sorry)!  The hardest part about breastfeeding is not being about to see how much milk the baby is taking in.  So, you simply have to feed him every time he acts hungry (which is pretty much all the time).  At Grayson's first week weigh in, he had dropped from 6.12 lbs to 6.4lbs.  This was a normal drop, but we were hoping for less.  His next weigh in is this coming Tuesday.  We will find out if he is getting enough from breastmilk alone, or if we will have to start supplementing with formula.  I still plan to breastfeed even if we need to use formula some.  Nothing has caused me more stress than breastfeeding, but I am determined to continue.

Bath time: You wouldn't think this would be a challenge.  I mean how dirty can a newborn get?  Well let me tell you, sometimes diapers do not hold "everything", and sometimes babies (especially boys) do not wait on a diaper before using the restroom.  Even if you have learned to keep the sprayer covered, it will still leak all over.  So, bathing is not always convenient.  And poor Grayson; he HATES bath time!!  He just wales the entire time, and it breaks my heart!  It is so hard for me to listen to him cry. 

Diapers: This is not necessarily talking about changing diapers.  As a nurse, I have pretty much perfected the diaper change on >100 pound adults.  So, this tiny, little human is so easy in comparison (even if he is kicking and screaming the whole time).  However, he does require much more frequent diaper changes.  And, they always seem to happen RIGHT when he drifts off to sleep!  It is very tempting to let him sleep for just a little-bit with the dirty diaper... I haven't given in to this temptation though (yet :/).  And dang, everybody was right when they said you could never have enough diapers!  We have already ran out of newborn diapers, and are working on our second pack of size 1's.  I think we will have to buy more size 1's before moving on to the size 2's (but only because he is so small).  And that little diaper genie is very nice (and keeps the smell to a minimum), but it needs to be about twice its size (it probably wouldn't keep the smell to a minimum then, though)!

Sleep time: This has been, by far, the most difficult thing to adjust to.  Either Grayson has a touch of colic that hits him at night, or he has his days and nights confused.  He is such a good baby between the hours of 8AM-9PM.  Then, all of a sudden he becomes super fussy and hungry all-the-time.  I think he likes to comfort-feed when he is fussy at night.  Sometimes I am feeding him for almost 4 hours (with little 10-15 minute breaks here and there).  Grayson also HATES to sleep in his crip or his pack-n-play.  We are slowly working on this.  He got a little spoiled the first few days (by all the visitors wanting to hold him constantly, and by his mom and dad holding him whenever visitors weren't there).  Now, he seems to think he should be held when he is sleeping.  We have learned to wait until he is in a deep sleep (you can tell if this is sleep by picking up their arm and letting it drop to their body, if he has "limp limbs" then he is in a deep sleep) to even try to put him down.  He can last for about an hour in his crib or pack-n-play now.  However, he LOVES his swing and will sleep for hours in it (sometimes I have to wake him up so he can eat)!  I don't want to put him in this at night when we are sleeping and not supervising him, though.  Things may be looking up though.  He is currently sleeping in his crib (and has been in there for 1.5 hours!!!)!!

Surgery recovery: I was not prepared for this at all! C-section was not even on my list of possibilities, so why would I prepare myself for the recovery process?  Thank God Michael was able to have a week off to help me recover and take care of baby! The first week after surgery, I was in more pain than I was willing to admit and unable to do a lot of normal, everyday things.  I only thought turning over in the bed was hard at 38 weeks pregnant.  I also learned that our bed is way too high and too soft to recover from abdominal surgery.  When you can't use your stomach muscles, it is so hard to boost yourself up into bed and then lie yourself back.  I also had trouble admitting what I was able to do, and I would often over-do-it and regret it later in the day.  Thankfully, my sweet husband reminded me often to take it easy and pretty much waited on me.

Don't worry though, as hard as this has been, it seems to get a little easier everyday!  Grayson is now a CHAMP at latching and LOVES to breastfeed (maybe a little too much).  Grayson still hates bath time, but I am getting a little faster at it.  I don't think the diaper thing gets any better, but at least I know to go ahead and buy a pack every time I go to the store.  I think sleep time is pretty much going to suck for the first few months (or more), but I am getting more used to hardly any sleep.  And, the surgery recovery gets a lot better by the second week.  I haven't had a pain pill in about a week, only hurting when I use my abdominal muscles, and getting stronger everyday. 

Despite all of the challenges of having a newborn, I simply cannot imagine my life without Grayson.  I love him SO much and am quickly learning how attached to him I am (no doctor is good enough for him, I worry about him constantly, and this 1.5 hours he has spent in his nursery is KILLING ME!).  Michael and I have really been blessed with this gift from God!

He's Perfect!!

So, who knew how much time a new baby would take away from my blog?! Oh, you all knew already??

Well, if you haven't guessed, Grayson Alan has arrived! I figured it is about time for me to write my delivery story:

I went to the doctor on 2/28 for my 39 week check-up. I was secretly (or not so secretly) hoping that I was dilated enough to be admitted to the hospital and induced. Well, I got the bad news that I was not dilated a bit! However, all the pressure I put on myself to dilate must have stressed out my body (lol)... My blood pressure was 142/92 (then 152/96 after the not dilated news, oops). So, my doctor decided I needed to go ahead and be induced. As excited as I was to finally get to meet my little man, everything seemed like it was moving too fast! Next, my doctor wanted to get an ultrasound to make sure baby was head-down. The ultrasound showed that baby was in the correct position, but his amniotic fluid was low. This only furthered the need to be induced (in a way, it was a blessing my blood pressure was high, or we may have never known the amniotic fluid was low). Because of the low amniotic fluid, we had to have a non-stress test to make sure baby could handle contractions. During the NST, the tech kept saying that Grayson wasn't moving much and having to stimulate him. She had me so worried! Dr. G said that everything looked ok on it, though.

Michael and I did get to go home and tie things up before heading to the hospital at 2:00. When we got to the hospital, we checked in and I was started on my Cytotec. This medicine was 2 little pills every 4 hours that are meant to "ripen" the cervix for dilation. So, all night I had to stay hooked up to an awful monitor and lay in bed taking medicine. Thankfully I had some wonderful L&D nurses! The next morning they checked me, and I was still not dilated a bit. Now it was time to start my pitocin. This is the drug to stimulate actual contractions. They start the dosing off low and gradually increase it. This did cause me to have contractions that got fairly uncomfortable towards the higher dosing, but never unbearable. Dr. G came and checked me at 12 and I was still not dilated any...

At this point, Dr.G told me we would have 3 choices. He would come check me at 5, and if I was not dilated any then: 1. We could continue the pitocin all night and see what happens; 2. We could stop the pitocin and try the Cytotec again (allowing me to eat again since I had been nothing by mouth since midnight); 3. Have a scheduled c-section. The pitocin wasn't an option for me, because it would keep me not eating and would be most likely to lead to an emergent c-section. The down-side to the Cytotec was that it could still lead to an emergent c-section or could mean a whole day of trying and leading nowhere only to have a scheduled c-section with a different doctor. I talked to the nurse and she said that almost all patients at try another day end up having a section, and I had friends that had gone through the same thing. Michael and I decided that we were most comfortable having a scheduled c-section with our doctor. So, the nurse checked me at 4 and I was still not dilated at all. We told her our decision and then things happened fast (but oh so slow at the same time!)!

We spent an hour in the room with our families waiting while the nurses got me ready for surgery. Close to 5:30 they wheeled me to the OR and dropped Michael off in a waiting area. I got my spinal (not nearly as bad as I expected, the sitting on the edge of the table and tying to put my elbows on my knees was the hardest part), laid on the operation table, and waited on Michael to come back. The dang nursing student got lost trying to find him! Thankfully, my CRNA yelled out "somebody get the husband!" before he missed anything! Before I knew it I heard Dr.G saying "here is his head! Look at those long eyelashes, are you sure it's a boy?" (he was a boy). Then, I heard the cry that stole my heart! It was surreal! Dr.G brought him over and I saw that head full of dark hair on my husband's face with my chin. I was So in LOVE! Nobody can explain the feeling you get when you see the little person you had growing inside of you for the first time. He was all mine (and Michael's...), and I was the happiest girl in the world! All I could say was, "oh my gosh, he's perfect!!" Then, our lives were changed forever... Sometimes I catch Michael just staring at Grayson. Seeing Michael hold him, there are just no words to finish this sentence. Michael is the best father already!

Grayson Alan was born March1, 2013 at 6:09 pm. He was a perfect 6 lbs, 12 oz and 20 1/4 inches long.