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)!
Gluten Free Barnard's
Tuesday, March 26, 2013
Saturday, March 16, 2013
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!
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!
Thursday, March 7, 2013
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.
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.
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