On Tuesday I went to Syracuse for yet another biophysical profile and non-stress test. Our little guy weighed in at 6 lbs. even! That means that he gained a whole pound in one week, and he is above the 80th percentile for growth. This is excellent because most O babies are underweight. Because he is head down and facing my spine/left hip, they couldn't get a good view of the O, and they were unable to measure it at all. His kidneys are slightly enlarged (+2mm), but the perinatologist indicated that he would only be concerned if they were 10mm+ larger than normal. So no real concerns there.
Everything else looked so good that my perinatologist said it would be ok to see my midwife here in town for another two weeks. That means I will only have two appointments in Syracuse before I deliver. WHOOP WHOOP! Only 4 weeks and 6 days until he's "out of mah bellay!"
Today is my last day of work. I am psyched about it, but a little concerned that I won't be able to muster the energy to keep up with Julia in these last weeks. It will be an adventure, I'm sure. Until next time...
Thursday, June 24, 2010
Friday, June 4, 2010
A General Update
Well, in the past month we have had 4 ultrasounds and non-stress tests - one each week. Every one has been good news. At our last appointment - 31 weeks - our baby boy measured 4 lbs., 2 oz., which is in the 76th percentile. That's a really good thing, because it means his abdomen is not lacking in circumference and there will be more room more quickly for the intestines to descend.
Which leads me to my not-so-good news. We were originally told that our baby's "O" was relatively small and that, shortly after birth, they would take him into surgery to return the contents to the abdominal cavity and then sew up the abdominal wall. We were looking at a stay of 1-2 weeks in the NICU. However, we met with the pediatric surgeon on May 12th, and he indicated that, based on the size of the omphalocele (now measuring just over 5 cm in its largest dimension), our baby will have to undergo various procedures over the course of a month. First, they will sterilize the area and place a plastic silo (or dome) over the omphalocele. They will keep him on his back in the NICU with a mesh "chimney" wrapped around his middle to keep the silo centered over the opening in his abdominal wall. There will be slight pressure applied to the sac. Hopefully, the combination of pressure and gravity will help the intestines recede back into the belly. This may take days or weeks. We won't know until it's happening. During this time, they will place an IV either in his arm, leg, or scalp to feed him. As he grows (which they assure us he will using the IV feed), there will presumably be more room for his bowels on the inside. Once the majority of the intestines have returned, they will force the rest and then close the abdominal wall, leaving a rather larger, vertical scar. They will attempt to create a realistic-looking belly button for him, but the surgeon warned that it is nearly impossible to duplicate a real belly button.
If all goes well with the procedure and the surgery, we should be able take him home as soon as the stitches can be safely removed, he is nursing and having normal bowel movements, and there is no threat of infection.
During this month or so that he will be in Syracuse, we will be trying to manage life as best as possible. On one of the discussion boards I follow online, a woman said something that I found very reassuring. The NICU nurse that was in charge of care for her infant told this new mom, "Your baby will know when you're here, but he won't know when you're not." I plan on repeating this to myself often, and hopefully that will take the rough edges off the guilt that I am already experiencing. The NICU visitation rules are super-strict. Only parents and grandparents are allowed. There can only be two visitors at a time, and one MUST be a parent. So even my parents can't go see the baby at the same time. And being that Julia will not be in daycare, either Eudes or I will have to stay with her while the other visits the baby, and then we'll have to trade off. It's sad to think that we won't get to spend time with him together very often.
We CAN stay at the Ronald McDonald house in Syracuse while the baby is in the hospital, but the more we consider this, the less viable an option it seems. Both Eudes Jr. and Isaiah have camp Sertoma every day - Papi as a pair counselor and Isaiah as a camper - up until the second week in August. They need to be here in Binghamton to catch the bus in the morning and afternoon. Julia needs us. We have the dogs, the cat, the fish. The lawn needs to be mowed and the house vacuumed. So our current plan is to drop the boys at the bus stop each morning, drive together to Syracuse, and one of us visit the baby while the other takes Julia somewhere in Syracuse to do something - whether it's a park or a beach or the zoo or the mall - for a couple of hours and then we'll switch. I have considered putting Julia in daycare a month early, but Eudes seems to think this is a bad idea. He says that her life will already be disrupted by having a new sibling and that we should try to make it as "normal" for her as possible. I feel torn. I think it might be better for her to be at school, where she doesn't have to spend 3 hours a day in a car. In any case, it seems impossible that we would stay in Syracuse for any length of time beyond my recovery from the c-section.
Even though I can't quite comprehend how everything will work out, I know it will. And even though it's going to be tough, I am still excited about meeting our new little one. I can't wait to see what he looks like and touch his soft skin and smell that newborn baby smell. We may not be able to spend as much time with him as we'd like to when he's in the NICU, but I know we will compensate for it when he gets home. As of now, we only have 7 weeks and 4 days to go. I have three weeks left of school, my brother's wedding, two more weddings, and then he'll be here. It's not that long...
Last thing - I know this is a crazy long post - we think we have settled on the first name, although the middle name is still in limbo. We think we will name him Elias. It's a combination of all three of the other kids' names and it's original. Middle will probably be either James, after my father, or Joseph, after Eudes' mother (her middle name is Josefa). There is an outside chance that we will choose a middle name that is NOT a family name. When we know for sure, we will certainly let everyone know.
Which leads me to my not-so-good news. We were originally told that our baby's "O" was relatively small and that, shortly after birth, they would take him into surgery to return the contents to the abdominal cavity and then sew up the abdominal wall. We were looking at a stay of 1-2 weeks in the NICU. However, we met with the pediatric surgeon on May 12th, and he indicated that, based on the size of the omphalocele (now measuring just over 5 cm in its largest dimension), our baby will have to undergo various procedures over the course of a month. First, they will sterilize the area and place a plastic silo (or dome) over the omphalocele. They will keep him on his back in the NICU with a mesh "chimney" wrapped around his middle to keep the silo centered over the opening in his abdominal wall. There will be slight pressure applied to the sac. Hopefully, the combination of pressure and gravity will help the intestines recede back into the belly. This may take days or weeks. We won't know until it's happening. During this time, they will place an IV either in his arm, leg, or scalp to feed him. As he grows (which they assure us he will using the IV feed), there will presumably be more room for his bowels on the inside. Once the majority of the intestines have returned, they will force the rest and then close the abdominal wall, leaving a rather larger, vertical scar. They will attempt to create a realistic-looking belly button for him, but the surgeon warned that it is nearly impossible to duplicate a real belly button.
If all goes well with the procedure and the surgery, we should be able take him home as soon as the stitches can be safely removed, he is nursing and having normal bowel movements, and there is no threat of infection.
During this month or so that he will be in Syracuse, we will be trying to manage life as best as possible. On one of the discussion boards I follow online, a woman said something that I found very reassuring. The NICU nurse that was in charge of care for her infant told this new mom, "Your baby will know when you're here, but he won't know when you're not." I plan on repeating this to myself often, and hopefully that will take the rough edges off the guilt that I am already experiencing. The NICU visitation rules are super-strict. Only parents and grandparents are allowed. There can only be two visitors at a time, and one MUST be a parent. So even my parents can't go see the baby at the same time. And being that Julia will not be in daycare, either Eudes or I will have to stay with her while the other visits the baby, and then we'll have to trade off. It's sad to think that we won't get to spend time with him together very often.
We CAN stay at the Ronald McDonald house in Syracuse while the baby is in the hospital, but the more we consider this, the less viable an option it seems. Both Eudes Jr. and Isaiah have camp Sertoma every day - Papi as a pair counselor and Isaiah as a camper - up until the second week in August. They need to be here in Binghamton to catch the bus in the morning and afternoon. Julia needs us. We have the dogs, the cat, the fish. The lawn needs to be mowed and the house vacuumed. So our current plan is to drop the boys at the bus stop each morning, drive together to Syracuse, and one of us visit the baby while the other takes Julia somewhere in Syracuse to do something - whether it's a park or a beach or the zoo or the mall - for a couple of hours and then we'll switch. I have considered putting Julia in daycare a month early, but Eudes seems to think this is a bad idea. He says that her life will already be disrupted by having a new sibling and that we should try to make it as "normal" for her as possible. I feel torn. I think it might be better for her to be at school, where she doesn't have to spend 3 hours a day in a car. In any case, it seems impossible that we would stay in Syracuse for any length of time beyond my recovery from the c-section.
Even though I can't quite comprehend how everything will work out, I know it will. And even though it's going to be tough, I am still excited about meeting our new little one. I can't wait to see what he looks like and touch his soft skin and smell that newborn baby smell. We may not be able to spend as much time with him as we'd like to when he's in the NICU, but I know we will compensate for it when he gets home. As of now, we only have 7 weeks and 4 days to go. I have three weeks left of school, my brother's wedding, two more weddings, and then he'll be here. It's not that long...
Last thing - I know this is a crazy long post - we think we have settled on the first name, although the middle name is still in limbo. We think we will name him Elias. It's a combination of all three of the other kids' names and it's original. Middle will probably be either James, after my father, or Joseph, after Eudes' mother (her middle name is Josefa). There is an outside chance that we will choose a middle name that is NOT a family name. When we know for sure, we will certainly let everyone know.
Thursday, April 29, 2010
More Good News
On Tuesday we went back up to Syracuse for our ultrasound and fetal echocardiogram. The ultrasound showed excellent growth of our baby boy - at 26 weeks he weighs approximately 2 lbs. 5 oz.! Chubby! The omphalocele has grown in size, but proportionately so, which is to be expected. It is about 3-4 centimeters in diameter, or an inch and 3/4. Not too bad considering he is probably about 14-16 inches long from head to heel.
The fetal echocardiogram went smoothly and the results were also excellent. Baby has no visible heart defects! The pediatric cardiologist went on to explain that, under normal circumstances, the chance of a baby being born with a heart defect is about 1 in 100. After checking the heart from many different angles and ruling out 96 various defects, our chances of the baby having a heart defect that wasn't identified on the sonogram is about 1 in 10,000. He said that there are four different defects that cannot be 100% ruled out on sonogram. One of those, called a Ventricular Septal Defect (VSD), is sometimes associated with omphalocele. This is a hole in the wall between the ventricles - or bottom chambers - of the heart. They tried to get the best view of that structure that they could and couldn't find any defects there. When the baby is born they will perform an echocardiogram on him to be sure, but the cardiologist seemed pretty confident that they won't find anything.
Overall, it was a great day! We received more pictures, though none of them were 3D or any better than the ones I've already posted. As the baby gets bigger, it gets harder to see a full profile. I know this from the many ultrasounds I had when pregnant with Julia.
So what happens from here? On May 12th we will meet with the pediatric surgeon who will be performing the surgery to repair the omphalocele. We will hopefully get an idea of what that process will look like in terms of type and number of operations, length of stay in NICU, etc.. Starting in two weeks, I will be visiting my regular mid-wife's office weekly for non-stress tests and fluid level checks. This means that I will sit in a nice recliner with a cup of juice while they hook two monitors up to my belly: one that measure uterine contractions and the other that monitors fetal heartbeat. Then they will measure my uterus to make sure it's within normal range. Additionally, we will continue to go to Syracuse for growth monitoring ultrasounds. We will have one at 30 weeks and another at 34 weeks, and then I think they will start seeing me weekly for ultrasounds at 36 weeks. By this time school will be out, so it shouldn't be too bad.
Then, provided all goes smoothly, I will return to Syracuse on July 27th for blood work and to meet with the anesthesiologist. On the 28th of July, Baby Clarke will be born via repeat c-section at approximately 10:30am.
Although I still feel a certain sense of loss because this pregnancy is not perfect, I am overjoyed and feel incredibly blessed that the dark side of this situation is only a brief shadow. He will come home with us and live a completely happy, healthy, and normal life. There was a point in time when I felt cheated out of my "natural birth" plan with Julia. I felt I had somehow failed as a mother because I needed modern medicine to safely deliver my child, and was constantly thinking, if this had been a century or more ago, one or both of us would most likely have died. Now I thank God for the advances in medicine that have made and will make it possible for us to raise this family. I feel very fortunate. I also feel very, very, VERY fortunate that we have excellent health insurance!!!
Thanks once again to our family and friends for the support. I'm sure some of you probably feel like it's all we talk about these days. I know that gets tiresome - hearing someone whine about the same issue over and over again. We appreciate your patience and willingness to listen, your generous offers of assistance, and your undying optimism. We love you guys!
And no, we are no closer to settling on a name than we were two, four, six months ago. We are not withholding - we simply can't decide!!!
The fetal echocardiogram went smoothly and the results were also excellent. Baby has no visible heart defects! The pediatric cardiologist went on to explain that, under normal circumstances, the chance of a baby being born with a heart defect is about 1 in 100. After checking the heart from many different angles and ruling out 96 various defects, our chances of the baby having a heart defect that wasn't identified on the sonogram is about 1 in 10,000. He said that there are four different defects that cannot be 100% ruled out on sonogram. One of those, called a Ventricular Septal Defect (VSD), is sometimes associated with omphalocele. This is a hole in the wall between the ventricles - or bottom chambers - of the heart. They tried to get the best view of that structure that they could and couldn't find any defects there. When the baby is born they will perform an echocardiogram on him to be sure, but the cardiologist seemed pretty confident that they won't find anything.
Overall, it was a great day! We received more pictures, though none of them were 3D or any better than the ones I've already posted. As the baby gets bigger, it gets harder to see a full profile. I know this from the many ultrasounds I had when pregnant with Julia.
So what happens from here? On May 12th we will meet with the pediatric surgeon who will be performing the surgery to repair the omphalocele. We will hopefully get an idea of what that process will look like in terms of type and number of operations, length of stay in NICU, etc.. Starting in two weeks, I will be visiting my regular mid-wife's office weekly for non-stress tests and fluid level checks. This means that I will sit in a nice recliner with a cup of juice while they hook two monitors up to my belly: one that measure uterine contractions and the other that monitors fetal heartbeat. Then they will measure my uterus to make sure it's within normal range. Additionally, we will continue to go to Syracuse for growth monitoring ultrasounds. We will have one at 30 weeks and another at 34 weeks, and then I think they will start seeing me weekly for ultrasounds at 36 weeks. By this time school will be out, so it shouldn't be too bad.
Then, provided all goes smoothly, I will return to Syracuse on July 27th for blood work and to meet with the anesthesiologist. On the 28th of July, Baby Clarke will be born via repeat c-section at approximately 10:30am.
Although I still feel a certain sense of loss because this pregnancy is not perfect, I am overjoyed and feel incredibly blessed that the dark side of this situation is only a brief shadow. He will come home with us and live a completely happy, healthy, and normal life. There was a point in time when I felt cheated out of my "natural birth" plan with Julia. I felt I had somehow failed as a mother because I needed modern medicine to safely deliver my child, and was constantly thinking, if this had been a century or more ago, one or both of us would most likely have died. Now I thank God for the advances in medicine that have made and will make it possible for us to raise this family. I feel very fortunate. I also feel very, very, VERY fortunate that we have excellent health insurance!!!
Thanks once again to our family and friends for the support. I'm sure some of you probably feel like it's all we talk about these days. I know that gets tiresome - hearing someone whine about the same issue over and over again. We appreciate your patience and willingness to listen, your generous offers of assistance, and your undying optimism. We love you guys!
And no, we are no closer to settling on a name than we were two, four, six months ago. We are not withholding - we simply can't decide!!!
Tuesday, March 30, 2010
Upcoming Dates
I am going to continue updating this blog as we go, though my entries may be few and far between until he is born.
The Perinatal Center called me this morning with appointment dates and times for us.
They are as follows:
APRIL 27th - Ultrasound at 10:00, Follow-up with Dr. at 11:30, Fetal Echocardiogram at 1:00.
MAY 12th - Pediatric Surgeon Consult at 10:30.
And can I just say, I am SO EXCITED for Spring Break! I can't wait! It will be so nice to spend time at home, relaxing! Hope everyone has a happy, healthy holiday!
The Perinatal Center called me this morning with appointment dates and times for us.
They are as follows:
APRIL 27th - Ultrasound at 10:00, Follow-up with Dr. at 11:30, Fetal Echocardiogram at 1:00.
MAY 12th - Pediatric Surgeon Consult at 10:30.
And can I just say, I am SO EXCITED for Spring Break! I can't wait! It will be so nice to spend time at home, relaxing! Hope everyone has a happy, healthy holiday!
Friday, March 26, 2010
GREAT NEWS!!!
For those of you who have not heard yet, we got the results from our amnio today and they show NO CHROMOSOMAL ABNORMALITIES!!! It seems that aside from this small omphalocele (still only about 1-2 cm in diameter), he is perfectly healthy! Thank you all for your prayers and well wishes. They made a difference! Thank you, Lord!
Now, we sleep soundly for the first time in three weeks...
Now, we sleep soundly for the first time in three weeks...
Tuesday, March 23, 2010
Still Waiting...
Just a quick update:
We called the Perinatal Center yesterday to see if our results were in. They were not. They said to call Friday if we have not heard by then. However, we have an appointment on Friday morning at 10:15 for another Level II ultrasound, so if we don't hear by Thursday night, I guess there is little point in calling Friday morning. I am fully expecting to have to wait the rest of this week out.
We called the Perinatal Center yesterday to see if our results were in. They were not. They said to call Friday if we have not heard by then. However, we have an appointment on Friday morning at 10:15 for another Level II ultrasound, so if we don't hear by Thursday night, I guess there is little point in calling Friday morning. I am fully expecting to have to wait the rest of this week out.
Thursday, March 18, 2010
Reflections
Almost a week has passed since our appointment in Syracuse and our amniocentesis. That means that they could call any day with results.
I had a dream a couple of nights ago that our baby boy was born with curly, light hair, a tiny, beautiful face, perfect miniature hands, fingers, feet, and toes, and a rather unsightly omphalocele. In my dream, they repaired the O and I had him in my arms within hours after birth. And he was fine.
Every time I think about getting the results back, my heart just drops right out of my chest and into the pit of my stomach. I feel heat rising up through my body and filling my head until it presses outwardly on my skull. I get nauseous and dizzy. But that being said, it is getting easier to deal with all of this. The more time I have to think about all of the different scenarios, all of the various outcomes, the consequences - the more comfortable I become with it all. I know it sounds crazy.
My greatest fear is that the results are inconclusive, which could happen. It's amazing how we never want to hear bad news and yet in these circumstances, we'll take bad news over no news at all. This is why I hated my Medieval Philosophy course in college. Trying to figure out the truth from a list of unknowns was frustrating, agonizing.
So today is another day. It's sunny and warm. I will get outside (at some point) and enjoy it while it lasts.
I had a dream a couple of nights ago that our baby boy was born with curly, light hair, a tiny, beautiful face, perfect miniature hands, fingers, feet, and toes, and a rather unsightly omphalocele. In my dream, they repaired the O and I had him in my arms within hours after birth. And he was fine.
Every time I think about getting the results back, my heart just drops right out of my chest and into the pit of my stomach. I feel heat rising up through my body and filling my head until it presses outwardly on my skull. I get nauseous and dizzy. But that being said, it is getting easier to deal with all of this. The more time I have to think about all of the different scenarios, all of the various outcomes, the consequences - the more comfortable I become with it all. I know it sounds crazy.
My greatest fear is that the results are inconclusive, which could happen. It's amazing how we never want to hear bad news and yet in these circumstances, we'll take bad news over no news at all. This is why I hated my Medieval Philosophy course in college. Trying to figure out the truth from a list of unknowns was frustrating, agonizing.
So today is another day. It's sunny and warm. I will get outside (at some point) and enjoy it while it lasts.
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