Today we headed over to the hospital to tour the NICU, meet the neonatologist, and then see Dr. Ryder and have another sonogram. I was picturing the NICU as a really loud, bright, scary place with lots of people crowded around tiny beds and alarms going off all the time. I was way off. It was very calm, quiet, with rooms along the outside windows. Jenine, a NICU nurse gave us the tour and answered our questions. I'm sure at times it is quite hectic, but while we were there it was very calm. I could catch glimpses of little feet and little heads sticking out of tiny beds in the rooms. There were many rooms and it was recently expanded to twice the size but they were only using half of it. Plenty of room for Isaac! You never want your baby to go to the NICU, but if he has to go, at least knowing there is plenty of room is comforting.
We met with Dr. Kahn, the neonatologist on duty at the time. She talked about what will happen when he's born and what they can do to help him. So far the most common answers we have gotten to our questions are:
1) "We won't know until he is born."
or
2) "It depends..." (on how much lung, how big the hole is, how his heart/lungs work together, etc)
This doctor had no new information, aside from assuring us that everything he would need is at this hospital and he won't need to be transferred. We've gotten used to answers 1 and 2, so we weren't surprised, but it does get tiring and a bit depressing. I do appreciate when they say, "This must be very hard for you", but even that gets tiring. I was determined not to cry while meeting the neonatologist, but apparently I didn't look convincing because Jenine had already gotten a box of tissues out for me. I did manage to ask all my questions and after the final answer #1, I cried, but of course they were very understanding. I'm sure they are used to hormonal women under a lot of stress and I am no exception.
We did get a copy of the NICU rules and sadly Nathan won't be able to come visit (no kids under 12) but that is probably for the best. Parents and grandparents can visit at anytime but anyone else needs one of us to accompany them. Only 2 visitors at a time. All visitors have to scrub their hands for 3 minutes before entering. No one with a cough, cold, vomiting, fever, cold sores, etc. can visit. They do have a few rooms that you can stay in if your baby is in critical condition. Hopefully we won't need one of those rooms! I am wondering what happens if I get a small cold because there's no way I'm staying away from him unless I'm dying. I will wear a full gas mask and gloves and scrubs if necessary!
We headed over to Dr. Ryder's office and had another bio-physical profile sonogram. Isaac scored 8 out of 8 again! We could see his diaphragm (or part of it) moving so that's a good sign again. Amniotic fluid was around 16 so that's a good sign too (11 is getting low, 25 is getting high). We watched him as he stuck his tongue out and stretched and wiggled. She even saw hair! Not surprising since Nathan was born with a full head of hair (as I was too). They don't measure his size during these visits, but next week when we see Dr. Weiss again, he will measure him.
Seven more weeks, seven more trips to the doctor left to go. Grow, Isaac, grow!
Thursday, May 9, 2013
Wednesday, May 1, 2013
32 Weeks and a BPP
Tomorrow I'm officially 32 weeks with 8 weeks left to go. This begins the 8th month, even though it seems like 40 weeks divided by 4 weeks per month should really be 10 months. It certainly feels like 10 months!
Today we went to Dr. Ryder's office and had a biophysical profile (BPP) which is just a sonogram where they look for five things: heart rate, muscle tone, movement, breathing and amount of amniotic fluid. The sono-tech was wonderful and talked us through everything she was looking for during the sonogram. I was most nervous about the breathing and the amniotic fluid. First she checked the heart rate, which was perfect, then checked the amniotic fluid, which was also right about the same as last week (yay!). I didn't think she would see much lung and was afraid he wouldn't be "breathing". However, she said she could easily see the lung and saw movement! I was shocked, we could see it too! So amazing! I know we still have a long ways to go, but just seeing the lung and seeing it move is so encouraging. Isaac moved around a lot and passed the test with flying colors! Way to go, buddy!
Fun Fact: Did you know amniotic fluid is really baby pee? That's right, at one point you also swallowed it, peed it out, and repeated the cycle. Gross and amazing, eh? But all of that is practice for when he's born and a good sign! So now that I've grossed you out, here are some fun photos she took of Isaac:
Today we went to Dr. Ryder's office and had a biophysical profile (BPP) which is just a sonogram where they look for five things: heart rate, muscle tone, movement, breathing and amount of amniotic fluid. The sono-tech was wonderful and talked us through everything she was looking for during the sonogram. I was most nervous about the breathing and the amniotic fluid. First she checked the heart rate, which was perfect, then checked the amniotic fluid, which was also right about the same as last week (yay!). I didn't think she would see much lung and was afraid he wouldn't be "breathing". However, she said she could easily see the lung and saw movement! I was shocked, we could see it too! So amazing! I know we still have a long ways to go, but just seeing the lung and seeing it move is so encouraging. Isaac moved around a lot and passed the test with flying colors! Way to go, buddy!
Fun Fact: Did you know amniotic fluid is really baby pee? That's right, at one point you also swallowed it, peed it out, and repeated the cycle. Gross and amazing, eh? But all of that is practice for when he's born and a good sign! So now that I've grossed you out, here are some fun photos she took of Isaac:
a foot... toes on the right, heel on the left
and a face!
For those of you like Brian, who had no idea what I was looking at and thought this was a profile picture, I will label:
See now? Of course, sonogram photos are always a bit strange looking, partly because baby is a little squished in there and partly because sonograms aren't overly clear. Nathan's sonogram photos weren't too great and made me a little afraid of what exactly this kid was going to look like, but he turned out pretty well! 3d sonograms are much better at getting good photos, but I have so many appointments already, I don't really need any more. I'm much more thrilled with seeing the lung and movement, but the photos are a fun bonus. Next Thursday we go on a tour of the NICU and talk to the neonatologist. Then we go back to Dr. Ryder for another BPP. I will say it is comforting to have all these sonograms, but it is a lot of appointments! I will categorize this under "first world problems" because I'm so thankful for all of these doctors who take such good care of us and I'm so lucky to live in a country with access to good maternal care. We're still stuck with a 50% chance of survival until Isaac arrives and they see how his lungs and heart work together. But today has made me a little hopeful and for that I'm thankful.
Friday, April 26, 2013
31 Weeks and a Nathan well-visit
Isaac is 57th percentile and not breech anymore! Yay! He's growing well and his heart looks good. Amniotic fluids are all within range and we're thankful for that too. Now begins the weekly visits. Next week I'll see my regular OB and they'll do a sonogram there just to check on Isaac. The following week we tour the NICU and meet the neonatologist and see Dr. Ryder again. The week after that we go back to see Dr. Weiss, the MFM (Maternal Fetal Medicine specialist). I'm exhausted just writing it all out! Just nine more weeks, Isaac, we can do it!
Dr. Weiss is an awesome doctor, but his picture taking isn't so fabulous. But at least we got a photo this time!
Yesterday I took Nathan to his 3 year well-visit. We've been curious how tall he is because it seems lately that all of his size two toddler pants are 3 inches too short and all of his size 3 pants won't stay on his skinny waist. This was also the first visit that they didn't put him on the lay-down baby weigher which made me a little sad but also proud of him. He is now 39 inches tall (80th percentile) and 30 lbs 3 oz (32nd percentile). He's growing like a weed! I had to fill out 4 pages of "does your child do this yet??" questions. These questions are made to freak out parents who are already trained to worry about development. One of them was, "Ask your child to say three random numbers" so I tried it. It went something like this:
me: "Nathan, say three, eight, nine."
Nathan: "Don't want to!"
me: "Ok, say five, six, four"
Nathan: "Don't want to say five, six, four!!"
check!
The doctor checked him out and declared him very healthy. Then we opted for the vision test since Brian and I both need glasses. It was a strange event but Nathan did very well. They sat him in a chair about 3 feet from a monitor and stuck two electrodes to his forehead and one to the back of his head. Then the nurse covered one of his eyes with a "pirate patch" and started a little video that showed animals and random black and white lines. Then she moved the patch and did the other side. Whenever the animals made noises, Nathan would respond back with the same noise (there was a lot of woofing) and looked up at the nurse with a big grin. The nurse then redirected him to look back at the screen. The whole event took maybe 5 minutes and she declared that he "passed". I'm not really sure how effective that was, but I'll take a "pass"!
Dr. Weiss is an awesome doctor, but his picture taking isn't so fabulous. But at least we got a photo this time!
Yesterday I took Nathan to his 3 year well-visit. We've been curious how tall he is because it seems lately that all of his size two toddler pants are 3 inches too short and all of his size 3 pants won't stay on his skinny waist. This was also the first visit that they didn't put him on the lay-down baby weigher which made me a little sad but also proud of him. He is now 39 inches tall (80th percentile) and 30 lbs 3 oz (32nd percentile). He's growing like a weed! I had to fill out 4 pages of "does your child do this yet??" questions. These questions are made to freak out parents who are already trained to worry about development. One of them was, "Ask your child to say three random numbers" so I tried it. It went something like this:
me: "Nathan, say three, eight, nine."
Nathan: "Don't want to!"
me: "Ok, say five, six, four"
Nathan: "Don't want to say five, six, four!!"
check!
The doctor checked him out and declared him very healthy. Then we opted for the vision test since Brian and I both need glasses. It was a strange event but Nathan did very well. They sat him in a chair about 3 feet from a monitor and stuck two electrodes to his forehead and one to the back of his head. Then the nurse covered one of his eyes with a "pirate patch" and started a little video that showed animals and random black and white lines. Then she moved the patch and did the other side. Whenever the animals made noises, Nathan would respond back with the same noise (there was a lot of woofing) and looked up at the nurse with a big grin. The nurse then redirected him to look back at the screen. The whole event took maybe 5 minutes and she declared that he "passed". I'm not really sure how effective that was, but I'll take a "pass"!
Such a big guy!
Thursday, April 18, 2013
30 weeks and thankful
Today I am 30 weeks, and I'm looking forward to seeing Isaac again next Wednesday. I'm enjoying his kicks and stretches and wiggles even though it makes my ribs hurt. Some days I believe he's going to survive and I imagine him growing up and I believe he'll thrive and I'm really excited. And then other days I'm just sad. I worry about not bringing him home and having to plan a funeral and it is all very overwhelming. I read blogs and stories of babies who survive against much greater odds and I am uplifted. Then there are stories of babies who make it but go on to battle hydrocephalus or reherniations or scoliosis and it breaks my heart. And then there are the ones that live only a few days or weeks and never go home. No one should have to plan on a 50% chance of a funeral soon after the birth of their baby. It is true that no one on earth has a 100% chance of survival and this week has been testament to that. However, you generally know that your loved ones will be safe each day, otherwise it would be hard to function. After losing Angie (which my doctors assured me was a "fluke"), I thought we would be okay. I took the high doses of folic acid to prevent another neural tube defect, we did all the testing, and thought we were in the clear. And now we are left with another "fluke" and I wonder if my healthy pregnancy was actually the fluke.
So at times like these when I am overwhelmed with anxiety and sadness, I try to remember all that I'm thankful for in this world. I'm thankful for:
My wonderful husband Brian, who cooks amazing food, takes good care of us, helps around the house, does the yard work, comes to every appointment, works hard all day, and when I ask him, "do you think Isaac will survive?" he always replies, "yes". Love that man.
Nathan, for comedic relief, snuggles and hugs, kisses and all the "love you mama"s. He also reminds me of all the true crisises in life, like when your pacifier falls out and gets dirty, or you drop your cracker on the floor and Chessie eats it. He also reminds me there is such a thing as an easy naïve pregnancy.
Chessie, for all the snuggles, and for not minding at all if I cry in her fur, just so long as I keep rubbing her belly.
My Mom and Dad and Jen, for the constant support. Mom watches Nathan and picks him up from school and takes him to The Little Gym. I couldn't do it without her. Jen is always willing to come visit if we need it, even though she's in Virginia. Family is a wonderful thing!
Brian's parents, Beth and Fred, who are so supportive and kind. They run their own business and still make time to come visit us. They raised 3 wonderful kids, including raising my Brian to be a man who loves and takes care of his family and I hope I can raise Nathan just as well.
All of our aunts and uncles and grandparents and cousins who remind us how lucky we are to have such a wonderful family.
My friends and neighbors who read my blog and write kind comments and check up on me.
The doctors and nurses at Medical City Dallas. 30% of the time, CDH is not detected until after birth. If a baby with CDH is born at a hospital that does not have a level 3 NICU or an ECMO machine or the many specialists to treat them, they have to be transferred to another hospital, and just that transfer at a critical time can take their life. So as much agony this diagnosis has brought us, I am truly thankful to know in advance and be ready.
I'm thankful for my office and coworkers who are all very supportive and keep me busy.
I'm thankful for the Breath of Hope foundation, especially Elizabeth, who sent me an amazing box full of gifts. I've been emailing her back and forth for weeks now and she has provided a lot of comfort and talked me off the ledge several times. Just look at all this amazing stuff they sent! They send a box to every family facing this scary diagnosis.
So I try to remember I am not alone. Some people say to me, "God only gives you what you can handle." (He must think I'm Chuck-Norris-tough) But I don't believe that, I think God gives you more than you can handle so you're forced to seek out the kindness and love of others. Thank you all for reading my blog and following our journey.
So at times like these when I am overwhelmed with anxiety and sadness, I try to remember all that I'm thankful for in this world. I'm thankful for:
My wonderful husband Brian, who cooks amazing food, takes good care of us, helps around the house, does the yard work, comes to every appointment, works hard all day, and when I ask him, "do you think Isaac will survive?" he always replies, "yes". Love that man.
Nathan, for comedic relief, snuggles and hugs, kisses and all the "love you mama"s. He also reminds me of all the true crisises in life, like when your pacifier falls out and gets dirty, or you drop your cracker on the floor and Chessie eats it. He also reminds me there is such a thing as an easy naïve pregnancy.
Chessie, for all the snuggles, and for not minding at all if I cry in her fur, just so long as I keep rubbing her belly.
My Mom and Dad and Jen, for the constant support. Mom watches Nathan and picks him up from school and takes him to The Little Gym. I couldn't do it without her. Jen is always willing to come visit if we need it, even though she's in Virginia. Family is a wonderful thing!
Brian's parents, Beth and Fred, who are so supportive and kind. They run their own business and still make time to come visit us. They raised 3 wonderful kids, including raising my Brian to be a man who loves and takes care of his family and I hope I can raise Nathan just as well.
All of our aunts and uncles and grandparents and cousins who remind us how lucky we are to have such a wonderful family.
My friends and neighbors who read my blog and write kind comments and check up on me.
The doctors and nurses at Medical City Dallas. 30% of the time, CDH is not detected until after birth. If a baby with CDH is born at a hospital that does not have a level 3 NICU or an ECMO machine or the many specialists to treat them, they have to be transferred to another hospital, and just that transfer at a critical time can take their life. So as much agony this diagnosis has brought us, I am truly thankful to know in advance and be ready.
I'm thankful for my office and coworkers who are all very supportive and keep me busy.
I'm thankful for the Breath of Hope foundation, especially Elizabeth, who sent me an amazing box full of gifts. I've been emailing her back and forth for weeks now and she has provided a lot of comfort and talked me off the ledge several times. Just look at all this amazing stuff they sent! They send a box to every family facing this scary diagnosis.
Receiving blankets and a hat, a camera and a plaster kit to make hand prints,
a book for Nathan, a diary, and a whole packet of information. And these adorable socks!
Socks for Surgery provides socks for babies because that is all they can wear during surgery.
So I try to remember I am not alone. Some people say to me, "God only gives you what you can handle." (He must think I'm Chuck-Norris-tough) But I don't believe that, I think God gives you more than you can handle so you're forced to seek out the kindness and love of others. Thank you all for reading my blog and following our journey.
Friday, April 12, 2013
29 weeks and DHREAMS
Just 11 weeks left and it has been nice to not have any appointments this week. Through all my research on CDH I've discovered a group that is doing their own genetic research: http://www.cdhgenetics.com/ DHREAMS stands for Diaphragmatic Hernia Research & Exploration, Advancing Molecular Science. Their goal is to find the genetic cause of CDH. In Isaac's case, we already know the cause, he has a micro-deletion on the 8th chromosome that has been shown to cause CDH. However, I called them up anyway to see if they would still be interested and they are! We will be donating Isaac's cord blood for their testing. They will want to get updates on his progress as well. Interestingly, Brian and I were tested and neither of us has that micro-deletion, which means it happened "de novo".
One thing I've been worried about is every time I read about the "worse" prognosis for CDH, it includes something about having a genetic problem. However, when I asked the geneticist and DHREAMS about this, she said that since the group of babies with any genetic problem is so small, they tend to lump them all together. Having this micro-deletion is in no way as bad as having a trisomy (like down syndrome, trisomy 21, or Edward's syndrome, trisomy 18), sadly their outcomes are much worse. However, there just isn't enough testing done yet to really know if this micro-deletion has any real effect on him besides the CDH. We only discovered it by doing the full micro-array. If we had stopped at the karyotyping, we would have never known about it. So it was good to know that just because he has this teeny tiny deletion, he isn't necessarily at a lower survival rate. We're just still stuck in the, "we have no idea what will happen" zone. They've only just started doing micro-arrays in the past few years, so there's no way to know how many CDH survivors have the same micro-deletion. I'm excited to be part of this research and I hope they go on to help babies with CDH and find a way to prevent it.
I've also been watching some of this series: http://www.childrensforhope.com/ The write up says:
"This moving six-part docu-series takes you behind hospital doors to share inspiring stories of the doctors, nurses, patients and families at the nationally acclaimed St. Louis Children's Hospital in St. Louis, Missouri.
Embark on six incredible journeys with patients from St. Louis and around the world. Follow them into the operating rooms, waiting rooms and rehabilitation rooms as Washington University Physicians push the frontline forward as much as humanity, science and courage allow."
Some of the episodes show the treatment of a baby with CDH. Another one shows a teenager that was in a car accident and it was only discovered after a chest x-ray that she had CDH and never knew about it. It makes you wonder how many people out there have CDH and don't know about it!
One thing I've been worried about is every time I read about the "worse" prognosis for CDH, it includes something about having a genetic problem. However, when I asked the geneticist and DHREAMS about this, she said that since the group of babies with any genetic problem is so small, they tend to lump them all together. Having this micro-deletion is in no way as bad as having a trisomy (like down syndrome, trisomy 21, or Edward's syndrome, trisomy 18), sadly their outcomes are much worse. However, there just isn't enough testing done yet to really know if this micro-deletion has any real effect on him besides the CDH. We only discovered it by doing the full micro-array. If we had stopped at the karyotyping, we would have never known about it. So it was good to know that just because he has this teeny tiny deletion, he isn't necessarily at a lower survival rate. We're just still stuck in the, "we have no idea what will happen" zone. They've only just started doing micro-arrays in the past few years, so there's no way to know how many CDH survivors have the same micro-deletion. I'm excited to be part of this research and I hope they go on to help babies with CDH and find a way to prevent it.
I've also been watching some of this series: http://www.childrensforhope.com/ The write up says:
"This moving six-part docu-series takes you behind hospital doors to share inspiring stories of the doctors, nurses, patients and families at the nationally acclaimed St. Louis Children's Hospital in St. Louis, Missouri.
Embark on six incredible journeys with patients from St. Louis and around the world. Follow them into the operating rooms, waiting rooms and rehabilitation rooms as Washington University Physicians push the frontline forward as much as humanity, science and courage allow."
Some of the episodes show the treatment of a baby with CDH. Another one shows a teenager that was in a car accident and it was only discovered after a chest x-ray that she had CDH and never knew about it. It makes you wonder how many people out there have CDH and don't know about it!
Wednesday, April 3, 2013
28 weeks
Tomorrow will be officially 28 weeks and today we went to three appointments. Getting to these appointments involves several stops along the way. First we go in two separate cars so we can drop off Brian's car at the train station. Then we drop Nathan off at Grandma Cynthia's house. Then it's off to the hospital! Thankfully this is all with in a small area but with rush hour traffic, it is always and adventure.
We made it to the first appointment at 9:30 and I drank the dreaded "glu-cola" drink. It's a lot like overly syrupy fruit punch. You had to drink it an hour before they take your blood. We saw Dr. Weiss first and he looked at Isaac on the sono. Isaac is now 2.5 pounds and growing well! That puts him in the 45th percentile. He is very active and his heart and brain all look good. Then the doctor looked at the amniotic fluid around Isaac and found it to be normal. High amounts of amniotic fluid can cause preterm labor. It also means the baby isn't moving fluid through his system like he should. So "normal" amniotic fluid levels were a big relief. Isaac is breach at the moment but they move around a lot still at this point. Dr. Weiss said everything looked good and he'll see us back in 3 weeks on the 24th.
Next stop was to Dr. Ryder's office a few floors down. The nurse checked my blood pressure and urine and everything looked good. They took my blood sample and said I might get results this Friday but if not we won't get them until the following Friday. I ate a Greek yogurt for breakfast this morning thinking it wouldn't have much sugar, but when I looked at the label it said 19 grams! Oh well, hoping that it won't mess up the test too much. They say not to fast but to not eat anything too sugary either. We shall see... if I fail this test, I'll need to take the 3 hour test and for that one you have to fast for 12 hours.
Last stop was at the AMNI office to get registered with the hospital and meet with Shelly who helps coordinate all the doctors and NICU tours. She talked to us about the delivery and how a whole team will be there to meet Isaac and make sure he gets the care he needs. We will set up a time to meet with the neonatologist and all of the doctors to go over the plan, ask questions, and get a tour of the NICU.
We're praying Isaac continues to grow well and that my amniotic levels stay within normal range. We're so thankful for the awesome team of doctors and nurses at Medical City.
In Nathan news, he went to a new class at The Little Gym today with Grandma Cynthia. He has been going to The Little Gym since he was a little under 2 and he loves it. This class is for 3-4 year olds and there isn't any parent involvement like there was in the younger class. We were a little worried that he wouldn't want to go in by himself, but he proved us wrong! Grandma said he walked right in to the class and followed along well and had a great time. It is a strange mixed feeling of joy and a little sadness when a child takes steps towards independence. So proud of him!
We made it to the first appointment at 9:30 and I drank the dreaded "glu-cola" drink. It's a lot like overly syrupy fruit punch. You had to drink it an hour before they take your blood. We saw Dr. Weiss first and he looked at Isaac on the sono. Isaac is now 2.5 pounds and growing well! That puts him in the 45th percentile. He is very active and his heart and brain all look good. Then the doctor looked at the amniotic fluid around Isaac and found it to be normal. High amounts of amniotic fluid can cause preterm labor. It also means the baby isn't moving fluid through his system like he should. So "normal" amniotic fluid levels were a big relief. Isaac is breach at the moment but they move around a lot still at this point. Dr. Weiss said everything looked good and he'll see us back in 3 weeks on the 24th.
Next stop was to Dr. Ryder's office a few floors down. The nurse checked my blood pressure and urine and everything looked good. They took my blood sample and said I might get results this Friday but if not we won't get them until the following Friday. I ate a Greek yogurt for breakfast this morning thinking it wouldn't have much sugar, but when I looked at the label it said 19 grams! Oh well, hoping that it won't mess up the test too much. They say not to fast but to not eat anything too sugary either. We shall see... if I fail this test, I'll need to take the 3 hour test and for that one you have to fast for 12 hours.
Last stop was at the AMNI office to get registered with the hospital and meet with Shelly who helps coordinate all the doctors and NICU tours. She talked to us about the delivery and how a whole team will be there to meet Isaac and make sure he gets the care he needs. We will set up a time to meet with the neonatologist and all of the doctors to go over the plan, ask questions, and get a tour of the NICU.
We're praying Isaac continues to grow well and that my amniotic levels stay within normal range. We're so thankful for the awesome team of doctors and nurses at Medical City.
In Nathan news, he went to a new class at The Little Gym today with Grandma Cynthia. He has been going to The Little Gym since he was a little under 2 and he loves it. This class is for 3-4 year olds and there isn't any parent involvement like there was in the younger class. We were a little worried that he wouldn't want to go in by himself, but he proved us wrong! Grandma said he walked right in to the class and followed along well and had a great time. It is a strange mixed feeling of joy and a little sadness when a child takes steps towards independence. So proud of him!
Thursday, March 28, 2013
27 Weeks and Meeting the Surgeon
Today is 27 weeks! Next week begins the third trimester and I can feel the exhaustion coming back. I’m in the final stretch here, but another 13 weeks sounds like a really long time! But the longer I can keep him in, up until the due date, the better. His favorite time of day to stretch and kick and dance around is between 3 and 5 am, hence the exhaustion. Keep kicking and growing, little buddy!
Today we met with the pediatric surgeon, Dr. Renard. He has been doing pediatric surgeries, including repairing diaphragmatic hernias and working with ECMO for 20 years now. The surgery to fix the hernia is not an emergency and they can even do it a month after the baby is born if they need to wait. They used to do the surgery right after the baby was born but discovered that would often not help the baby. They wait until the baby is stable and well oxygenated now. He said they can do the repair thoroscopically but typically that is with smaller hernias and most likely they’ll need to do the larger incision. (I figure Isaac will be able to tell all the girls about his huge scar and how he almost died and impress them all immensely) He said they will use a gore-tex patch if they need to and that other patch materials have not been shown to work any better. We asked him about which hospital in the area was the best and he said he would go to Medical City. The only other option we were considering was Parkland/children’s hospital. He said that it was a good hospital but that it was also a teaching hospital, and if it was his baby he would rather the doctors be concerned only with the baby and not trying to make every event a teaching moment. We also asked him if it would be worth it to go all the way to Texas Children’s in Houston, but he said there would be no real difference in the care, just different doctors. He said they can take care of as many as 3 babies on the ECMO machine if they need to, but they really try not to use it as much now because of all the complications. They can control the breathing/oxygenation better now with new ventilators and medications. (That was reassuring because I’ve read far too many scary ECMO stories!) He also said he thought 25% lung capacity that Isaac has sounds pretty good and that he thinks he has a good chance. That number terrified me when I read it on the MRI report so it was nice to hear him say it sounded favorable to life. He said they really don’t know how well these babies will do until they are born, but the ones that do make it tend to do really well.
Overall it was good to get our questions answered and feel more definite about a plan. Because this surgery isn’t an emergency, most likely we will be able to have Dr. Renard do the surgery and we feel pretty good about that.
Next Wednesday, the 3rd, we see Dr. Weiss and Dr. Ryder. I also have the dreaded glucose test where I have to drink a special “Glu-cola” drink (like really syrupy cool-aid) and then have blood taken to test for gestational diabetes. Hopefully all of that will go well!
Here is Isaac from our 25 week scan. I love how it looks like his little fists are up, ready to fight for his life!
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