mattricia
04-09-2008, 11:11 PM
Our story begins at Jack's one month well baby check-up in August 2007. (Actually, it begins on July 2, 2007 when our BIG (9lbs, 4oz), beautiful baby boy was born. There were no indications of anything out of the ordinary...)
Then at his one month check-up, the nurse was surprised to find that his head had grown two inches since he was a week old. When the doctor came in, she remeasured it and came up with the same measurement. So we were referred for an ultrasound to check for hydrocephalus. The results came back normal. So we didn't give it another thought.
At his two month check-up, we discussed his head size and ridging. I really didn't even notice the elongated shape at that time (or maybe it wasn't so long then, b/c he was only two months old and i don't have any top-photos from that age). The pediatrician referred us to a neurologist.
We waited three months for that appointment and we figured with a wait like that, it must be nothing to worry about. You could have knocked us over with a feather when Dr. Kaddurah, the neurologist said he suspected sagittal craniosynostosis. We went for a CT scan two days later. The results confirmed his suspicion.
He referred us to Drs. Maraszko (NS) and Buchman (PS) at Mott Children's Hospital at U of M. We waited another month for that appointment.
We went on January 7. They were very knowledgable and anticipating of our questions. The visit was like a whirlwind...so many important words, spoken so quickly. Hearing and comprehending were not simultaneous for me. I kept asking them to repeat things. Seven to eight hour surgery, that's the one thing I remember clearly, the first two hours or so, of which would be spend "prepping him" by the anesthesiologist... Dr. Maraszko will remove Jack's sagittal suture, and Dr. Buchman will perform a cranial vault reshaping, to correct the elongation of Jack's skull.
Our original surgery date was March 12. At the end of February, Henry our 4 year old, developed bronchialitis (diagnosed by our ped) and was very sick in bed for two days. A few days later, i took Jack to the ped, in an attempt to be proactive. He said his lungs "sounded good", but he prescribed a steroid to head-off any lung issues w/ surgery a couple of weeks away. Silly me, i called the surgeons office the next day to let them know. They asked me several questions about Jack's health and then they called anesthesiology and told me we'd probably end up being postponed. Based on my over the phone diagnosis??? I asked to have someone in their office look at him before they made this call. They told me i could have a chest x-ray done, which i did two hours later and faxed to them. It showed "clear lungs". It didn't matter though. The decision had been made. I blame myself for trying to be proactive, instead of just waiting for them to call it. So they called our pediatrician who had written "bronchialitis" in Jack's chart. (I still can't figure out how someone can have clear lungs and bronchialitis at the same time!)
So we were postponed six weeks. It was a devastating setback, after all the other waiting we've done. Here's how our waiting breaks down:
1 month after ultrasound for hydrocephalous
3 months to see neurologist
1 month for surgical consult
2 1/2 months for surgery date
6 weeks for second surgery date
(UPDATE) four more weeks for third/FINAL date
As I type this, two weeks from today, God-willing, we should be on the other side. You can tell i'm hesitant to take anything for granted, lest it be taken away again. Waiting so long for Jack to undergo this scary, major surgery has been hell for me, as many of my wonderful craniofriends here can attest. But this site has saved my sanity many, many times.
We've been in quarantine for almost three weeks now. It's almost over. Poor Henry misses preschool so much. I'm doing all that's in my power to keep the sickies away. I realized i needed to give it up to God, b/c i was worrying myself sick about them getting sick again. God is good. He has taken this burden from me. I could feel it lift from my shoulders when i said "Amen".
UPDATE: It's May 7. I've been avoiding editing this b/c it's still hard to believe that we had a second postponement after all the waiting we've done... Jack somehow got strep 1 1/2 weeks before his April 23rd surgery date. I reported it during the pre-op phone call the day before surgery, and they postponed us for another month. They said four weeks is standard after strep, but it was really five weeks from when he was diagnosed with it. I pointed that out to them, but it didn't make a difference. Our new date is May 21; two weeks from today.
Yesterday Henry started coughing and sneezing. (I know, right?!?!?!) But he also has allergies and his eyes have been itching, so i'm doing my best not to panic. That's how our first postponement came to be.
I'm really struggling with my faith lately. I know some things just happen. There's that scripture, "Time and chance happen to all"... Then people also keep telling me that God's in charge and he has a plan... I do believe both of those things. But what about praying specifically to God for his intervention in our lives when we need a miracle, like our child not getting sick again???
I've also been told that there might be a "lesson" in this for me. Maybe i need to learn something. I do believe i'm learning patience and i'm keeping my mind open and trying to trust more completely in God, but i'm truly starting to wonder if He's listening to me. This is very hard to admit and i feel very guilty for it.
This thread is supposed to be about our children's journeys, but so far my post has just been about me and my waiting/worrying/agonizing/questioning/doubting. Yes, i'm so grateful that Jack's cranio is fixable, and that he doesn't have a brain tumor or something equally horrific. I need to focus on the joy in that piece. But i really need for this endless waiting to be over so we can move on with our lives and not have this hanging over our heads any longer. It's been almost six months since our diagnosis (after waiting three months to see the neurologist). He's only ten months old!
UPDATE: On May 13, the surgeon's office called to say that they could do Jack's surgery the next day!!! (It had been four weeks since the strep began.) I couldn't believe it. My mind reeled! So much to do and arrange in the next few hours... It was such a blessing to have it land in our laps that way and not have much time to agonize about it. Our only concern was that he had a clear runny nose. They said it would be decided the next morning, whether or not they could proceed. He was scheduled for 11 a.m.
So May 14 we went for pre-op bloodwork at 9 a.m. and afterward, a nurse in the anesthesiology department gave him a check up. Then the anesthesiologist came in, very seriously and said she wanted to speak with us. I was SOOOO WORRIED by her tone. She said, "I understand he has a cold and diarrhea." DIARRHEA??? I almost jumped out of my seat. "No diarrhea. I don't know where you heard that, but it's not true. He just has clear snot." So after a series of questions to determine the extent of the runny nose, we were cleared.
He was in surgery for about 7 hours. We only got occasional, "He's doing fine" updates; otherwise we waited with my in-laws, our 4-year old, and one of my best friends. We chatted, watched TV, visited CK, played Uno, etc.
At 7:00 p.m. we got to see him in the recovery room. I had seen so many pictures of babies after surgery, but seeing my Jack like that was still a shock, with his head wrapped in the turban, sleeping... Our son Henry got to see him as we were taking him up to the PICU, and he said, "He looks cute!" I suspect he was referring to the bunny beanie baby they'd put in Jack's crib, as he couldn't take his eyes off it.
Jack spent that night, the next day, and night in the PICU, as there were no available rooms on either of the ped floors. It was very reassuring that he got that extra care for the extra night. The second morning, when he was still in the PICU, when they removed his turban, a clot came off with it, and SIX OUNCES of fluid drained out in a matter of minutes. We arrived shortly after this had happened. The nurse said she had been saying prayers that we would not walk in during that, due to the large volume of pink fluid... I still get queasy thinking about that.
We spent three more days/nights on the ped floor. Jack slept most the first three days...waking just for a few minutes to eat. Having his eyes swollen shut, was difficult. I know it was a combination of being through skull surgery, and not being able to see, but the way i describe it, is that he sort of went inside himself. He couldn't understand what was happening. It was scary to hold him, but also very comforting. It seemed the only thing familiar to him and us.
On day four, we decided to start walking him in the stroller. That seemed to be the only thing that stopped his fussing at that point. The swelling was starting to decrease on that day. I had a feeling his eyes would open that day. He just looked different. (The nurse said it would probably be the next day...always trust mother's intuition.) Matthew was standing with the stroller, while i went to the desk to ask for them to turn off the security monitor for a while, so we could go off our floor. As i was walking back to him, i looked at him and realized HE WAS LOOKING AT ME...SEEING ME!!! I crouched down in front of him and just bawled my eyes out, while we both talked to him. About ten seconds later, he vomited a large amount. We assume it was sensory overload, after not seeing for three days (well, really four, b/c he was "under" during surgery). He vomited a few more times after that, so they kept us until day six, instead of five.
We spent the next four days at home, pushing him in his stroller around the kitchen. That was the only time he wasn't crying. We were just giving him regular tylenol and he was so fussy. So i decided to try the codeine they'd given us and that made a huge difference. He was calm and even smiled for the first time, 30 minutes after i gave him the codeine! So we did that for a couple of days and then slowly weaned him off.
By day 9-10 post op, he was back to his normal happy self. I was really starting to get worried, though, after hearing all the stories of babies who bounced back so quickly. He just took longer. This is my message to you who haven't been through it yet: Do not panic if your child doesn't bounce back right away. Give it time. Your baby will come back to you.
We are five weeks post op today! It has gone by sooo quickly. After all the waiting/postponing we did pre-op, i'm shocked that time can go so fast! It's as if we were in slow-motion before and now we're in fast-forward!!! It's wonderful to be on the other side. I will be forever grateful to Katie and Doug for starting craniokids and for all of the wonderfully supportive parents on this site.
Here's the link to the montage of Jack's journey:
http://www.onetruemedia.com/share_view_player?p=610311d8bafab07d49c29d"
Then at his one month check-up, the nurse was surprised to find that his head had grown two inches since he was a week old. When the doctor came in, she remeasured it and came up with the same measurement. So we were referred for an ultrasound to check for hydrocephalus. The results came back normal. So we didn't give it another thought.
At his two month check-up, we discussed his head size and ridging. I really didn't even notice the elongated shape at that time (or maybe it wasn't so long then, b/c he was only two months old and i don't have any top-photos from that age). The pediatrician referred us to a neurologist.
We waited three months for that appointment and we figured with a wait like that, it must be nothing to worry about. You could have knocked us over with a feather when Dr. Kaddurah, the neurologist said he suspected sagittal craniosynostosis. We went for a CT scan two days later. The results confirmed his suspicion.
He referred us to Drs. Maraszko (NS) and Buchman (PS) at Mott Children's Hospital at U of M. We waited another month for that appointment.
We went on January 7. They were very knowledgable and anticipating of our questions. The visit was like a whirlwind...so many important words, spoken so quickly. Hearing and comprehending were not simultaneous for me. I kept asking them to repeat things. Seven to eight hour surgery, that's the one thing I remember clearly, the first two hours or so, of which would be spend "prepping him" by the anesthesiologist... Dr. Maraszko will remove Jack's sagittal suture, and Dr. Buchman will perform a cranial vault reshaping, to correct the elongation of Jack's skull.
Our original surgery date was March 12. At the end of February, Henry our 4 year old, developed bronchialitis (diagnosed by our ped) and was very sick in bed for two days. A few days later, i took Jack to the ped, in an attempt to be proactive. He said his lungs "sounded good", but he prescribed a steroid to head-off any lung issues w/ surgery a couple of weeks away. Silly me, i called the surgeons office the next day to let them know. They asked me several questions about Jack's health and then they called anesthesiology and told me we'd probably end up being postponed. Based on my over the phone diagnosis??? I asked to have someone in their office look at him before they made this call. They told me i could have a chest x-ray done, which i did two hours later and faxed to them. It showed "clear lungs". It didn't matter though. The decision had been made. I blame myself for trying to be proactive, instead of just waiting for them to call it. So they called our pediatrician who had written "bronchialitis" in Jack's chart. (I still can't figure out how someone can have clear lungs and bronchialitis at the same time!)
So we were postponed six weeks. It was a devastating setback, after all the other waiting we've done. Here's how our waiting breaks down:
1 month after ultrasound for hydrocephalous
3 months to see neurologist
1 month for surgical consult
2 1/2 months for surgery date
6 weeks for second surgery date
(UPDATE) four more weeks for third/FINAL date
As I type this, two weeks from today, God-willing, we should be on the other side. You can tell i'm hesitant to take anything for granted, lest it be taken away again. Waiting so long for Jack to undergo this scary, major surgery has been hell for me, as many of my wonderful craniofriends here can attest. But this site has saved my sanity many, many times.
We've been in quarantine for almost three weeks now. It's almost over. Poor Henry misses preschool so much. I'm doing all that's in my power to keep the sickies away. I realized i needed to give it up to God, b/c i was worrying myself sick about them getting sick again. God is good. He has taken this burden from me. I could feel it lift from my shoulders when i said "Amen".
UPDATE: It's May 7. I've been avoiding editing this b/c it's still hard to believe that we had a second postponement after all the waiting we've done... Jack somehow got strep 1 1/2 weeks before his April 23rd surgery date. I reported it during the pre-op phone call the day before surgery, and they postponed us for another month. They said four weeks is standard after strep, but it was really five weeks from when he was diagnosed with it. I pointed that out to them, but it didn't make a difference. Our new date is May 21; two weeks from today.
Yesterday Henry started coughing and sneezing. (I know, right?!?!?!) But he also has allergies and his eyes have been itching, so i'm doing my best not to panic. That's how our first postponement came to be.
I'm really struggling with my faith lately. I know some things just happen. There's that scripture, "Time and chance happen to all"... Then people also keep telling me that God's in charge and he has a plan... I do believe both of those things. But what about praying specifically to God for his intervention in our lives when we need a miracle, like our child not getting sick again???
I've also been told that there might be a "lesson" in this for me. Maybe i need to learn something. I do believe i'm learning patience and i'm keeping my mind open and trying to trust more completely in God, but i'm truly starting to wonder if He's listening to me. This is very hard to admit and i feel very guilty for it.
This thread is supposed to be about our children's journeys, but so far my post has just been about me and my waiting/worrying/agonizing/questioning/doubting. Yes, i'm so grateful that Jack's cranio is fixable, and that he doesn't have a brain tumor or something equally horrific. I need to focus on the joy in that piece. But i really need for this endless waiting to be over so we can move on with our lives and not have this hanging over our heads any longer. It's been almost six months since our diagnosis (after waiting three months to see the neurologist). He's only ten months old!
UPDATE: On May 13, the surgeon's office called to say that they could do Jack's surgery the next day!!! (It had been four weeks since the strep began.) I couldn't believe it. My mind reeled! So much to do and arrange in the next few hours... It was such a blessing to have it land in our laps that way and not have much time to agonize about it. Our only concern was that he had a clear runny nose. They said it would be decided the next morning, whether or not they could proceed. He was scheduled for 11 a.m.
So May 14 we went for pre-op bloodwork at 9 a.m. and afterward, a nurse in the anesthesiology department gave him a check up. Then the anesthesiologist came in, very seriously and said she wanted to speak with us. I was SOOOO WORRIED by her tone. She said, "I understand he has a cold and diarrhea." DIARRHEA??? I almost jumped out of my seat. "No diarrhea. I don't know where you heard that, but it's not true. He just has clear snot." So after a series of questions to determine the extent of the runny nose, we were cleared.
He was in surgery for about 7 hours. We only got occasional, "He's doing fine" updates; otherwise we waited with my in-laws, our 4-year old, and one of my best friends. We chatted, watched TV, visited CK, played Uno, etc.
At 7:00 p.m. we got to see him in the recovery room. I had seen so many pictures of babies after surgery, but seeing my Jack like that was still a shock, with his head wrapped in the turban, sleeping... Our son Henry got to see him as we were taking him up to the PICU, and he said, "He looks cute!" I suspect he was referring to the bunny beanie baby they'd put in Jack's crib, as he couldn't take his eyes off it.
Jack spent that night, the next day, and night in the PICU, as there were no available rooms on either of the ped floors. It was very reassuring that he got that extra care for the extra night. The second morning, when he was still in the PICU, when they removed his turban, a clot came off with it, and SIX OUNCES of fluid drained out in a matter of minutes. We arrived shortly after this had happened. The nurse said she had been saying prayers that we would not walk in during that, due to the large volume of pink fluid... I still get queasy thinking about that.
We spent three more days/nights on the ped floor. Jack slept most the first three days...waking just for a few minutes to eat. Having his eyes swollen shut, was difficult. I know it was a combination of being through skull surgery, and not being able to see, but the way i describe it, is that he sort of went inside himself. He couldn't understand what was happening. It was scary to hold him, but also very comforting. It seemed the only thing familiar to him and us.
On day four, we decided to start walking him in the stroller. That seemed to be the only thing that stopped his fussing at that point. The swelling was starting to decrease on that day. I had a feeling his eyes would open that day. He just looked different. (The nurse said it would probably be the next day...always trust mother's intuition.) Matthew was standing with the stroller, while i went to the desk to ask for them to turn off the security monitor for a while, so we could go off our floor. As i was walking back to him, i looked at him and realized HE WAS LOOKING AT ME...SEEING ME!!! I crouched down in front of him and just bawled my eyes out, while we both talked to him. About ten seconds later, he vomited a large amount. We assume it was sensory overload, after not seeing for three days (well, really four, b/c he was "under" during surgery). He vomited a few more times after that, so they kept us until day six, instead of five.
We spent the next four days at home, pushing him in his stroller around the kitchen. That was the only time he wasn't crying. We were just giving him regular tylenol and he was so fussy. So i decided to try the codeine they'd given us and that made a huge difference. He was calm and even smiled for the first time, 30 minutes after i gave him the codeine! So we did that for a couple of days and then slowly weaned him off.
By day 9-10 post op, he was back to his normal happy self. I was really starting to get worried, though, after hearing all the stories of babies who bounced back so quickly. He just took longer. This is my message to you who haven't been through it yet: Do not panic if your child doesn't bounce back right away. Give it time. Your baby will come back to you.
We are five weeks post op today! It has gone by sooo quickly. After all the waiting/postponing we did pre-op, i'm shocked that time can go so fast! It's as if we were in slow-motion before and now we're in fast-forward!!! It's wonderful to be on the other side. I will be forever grateful to Katie and Doug for starting craniokids and for all of the wonderfully supportive parents on this site.
Here's the link to the montage of Jack's journey:
http://www.onetruemedia.com/share_view_player?p=610311d8bafab07d49c29d"