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 3^rd, 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! 

 

 

 

 

26 weeks

Thursday was 26 weeks and we were happy to not have any appointments this week.  Next week on the 28th we meet with the surgeon who is part of a group of 5 pediatric surgeons (Pediatric Surgical Associates).  The doctor we meet with may not be the one that does the actual surgery, but it will be good to get some questions answered.  They are located just north of the hospital.  I've been talking with the AMNI (advanced maternal and newborn institute) program from the hospital and they have been very helpful.  We will get a tour of the NICU and meet with the neonatologist around 32 weeks.  We hope to get a lot of questions answered like how often they do this type of surgery and what type of patch they use and how successful they are at the surgeries. 

In other news, we are so excited that Nathan has had no accidents this week and this is only week 2 of potty training!  Way to go, big guy!  Tomorrow we are having a little birthday party for him (has it really been 3 years???).  His actual birthday is the 31st which just so happens to be Easter this year.  His Aunt Jen and Uncle Ryan are visiting this weekend so we decided to celebrate early.  Happy Birthday, Nathan, we love you!

25 Weeks

Isaac is 2 pounds and growing right on track.  We met again with Dr. Weiss, the maternal fetal specialist yesterday.  He looked at Isaac on the sono and checked him over well.  He said he looks like he is growing well and that the lung-to-head ratio hasn't changed.  It was good to see Isaac on the sono again and know that we'll get another one in 3 weeks, which is one nice benefit of having a "high risk" pregnancy.  Normally you get one sonogram and that's it (of course, I'd much rather he was healthy!)  We'll continue to see Dr. Weiss every 3 weeks until around 32 weeks and then we'll see him every week.  He said there's no need to induce unless I go past my due date.  The longer Isaac stays inside, the better, because bigger babies are easier to operate on and the lungs have more time to grow.  But after 40 weeks, they get too big and the risks outweigh the benefits.

I asked him about a procedure called fetal endoscopic tracheal occlusion (FETO), where they do a surgery on the mom and put a balloon down the baby's throat and into baby's lung.  However, he said he has not heard any great news that it really helps, which corresponds to what I have read as well.  But it was good to ask about it and hear his thoughts on it.  There are risks to the mom as well and risks that it will cause preterm labor and I'd rather not mess with either of those issues. 

Nathan is doing exceptionally well with potty training and we are all impressed.  I think we were all rather skeptical at first but he has really shown that he was ready.  He even makes it all night!  I'm sure there will be accidents to come as we get more comfortable with it all and forget to tell him to go every hour, but so far most days there are no accidents.  He even comes to us and says he needs to go.  Way to go, buddy!  So proud of you!

Potty Training Progress

Warning: This post contains a lot of potty talk!  This weekend was the beginning of potty training boot camp, which also just happened to coincide with Brian's birthday.  (Let's get this potty started!!  yeah... Brian didn't think it was funny either...)  We followed the Potty Train in Three Days book by Lois Kleint (we had to download it to our Ipad because it is currently out of stock).  It is a pretty short book but gets right to the point.  I was rather skeptical because the first day you have your child throw away the leftover diapers and from then on, only undies!  It explicitly prohibits pull-ups.  I think this was scarier for mom and dad than it was for Nathan.  He had already used the potty several times, but not consistently.  This week is also spring break so no mother's day out.  It also coincided with daylight savings time. 

Day 1

Brian woke up Nathan and we threw away the diapers and started going to the potty every 30 minutes.  Only one accident!  He even made it through nap time and stayed dry.  No poo, but sometimes he misses a day on the weekend.  He gets a little toy or candy for each success.  Everyone was pleased with the progress and we put him to bed in just undies. 

Day 2

Nathan wakes up soaked, not surprisingly, and I get to do some laundry.  We decide to go every hour and see how he does.  Three accidents, but we did get poo!  Hooray!  He made it through nap time dry.  We decided to give bedtime a try again and stopped all liquids after 6:30. 

Day 3

Brian goes to work and Natalie stays home to continue the potty training.  Daylight savings means that waking him up at 7:30 (his usual wake-up time) feels like he's waking up at 6:30.  We're hoping this means we get him up before he wakes up and pees.  I nervously go to his door and walk to his crib... still asleep... pat his little bum... dry!  I scoop him up and whisk him to the potty.  Half asleep, he complains, but he pees and we celebrate with a new container of play-doh.  The day goes very well as we settle into a 45 minute potty break ritual.  He started to go number 2, told me, and we ran to the potty where he finished going.  I'll consider that a success too.  Around noon, I take him upstairs for another potty break.  I look over into Nathan's room and see Chessie sniffing around.  A few minutes later I look back and she is squatting in his room, peeing.  Chessie!!  Apparently she felt left out of all of the excitement and wanted to prove that she too could pee.  Rotten dog.  I whisk Nathan off the potty and as I'm soaking up Chessie's mess with copious paper towels, Nathan comes in and informs me that he has just wet his pants.  Finally we were all cleaned up and Chessie was outside and we had a much better day after that. 

Day 4 

Nathan woke up dry again!  Hooray!  Off to Grandma's house we go.  We arrive, potty in hand (and extra undies too) and go over all of the potty rules with Grandma.  I show Nathan where his potty is in Grandma's house and Grandma starts the timer.  I go off to work and try not to call as soon as I get there.  Grandma called later to report that her timer didn't work but Nathan came to her and said he needed to go!  Success!  I arrived after work and found him still asleep but dry.  No poo, but we're still impressed.  Go, Nathan, go! 

We are anxiously waiting to see Isaac again this Friday at the maternal fetal specialist appointment.  The "upside" to all of this is that we get to see him quite frequently on sonograms.  I feel him kicking a lot and know he is strong.  Love you, little buddy!

24 Weeks and Potty training...

We went to an appointment with my OB-GYN, Dr. Ryder, last Wednesday (also the day after my birthday!) for a regular pre-natal visit.  I will continue to see her every 4 weeks and she will check blood pressure, urine, weight, and heartbeat.  They check urine and blood pressure of all pregnant women to makes sure you aren't showing signs of pre-eclampsia (what Sybil had in Downton Abbey).  She listened to the heartbeat and said everything looked great!  It was nice to go to a "regular" ob visit even though this pregnancy is far from normal.  Our next appointment is next Friday the 15th with Dr. Weiss, the maternal fetal specialist.  And then after that I see Dr. Ryder again on April 3rd and have to drink the dreaded "glu-cola" sugar drink to test for gestational diabetes.   We're hoping to meet with the surgeon and see the NICU soon. It will be good to ask questions and see everything.

The micro-array results came back with some interesting news.  The karyo-typing did not pick up anything wrong on any of the chromosomes but the microarray looks even closer.  It found a "micro-deletion" on the 8th chromosome.  What is that teeny tiny deletion related to?  Yup, CDH.  It is amazing that they can even find this micro-deletion, something even 10 years ago they couldn't even see.  There is a chance that Brian or I have this same micro-deletion so we will get a test done to check.  This deletion is not related to any neurological problems, but it is related to heart problems, so we will continue to check on Isaac's heart and pray that it continues to look great.  I'm sure everyone has some sort of micro-deletion and the more we learn about the genome the better we can learn about and treat all sorts of problems.  Yay, science! 

Isaac is kicking a lot and likes to wake me up at 4 am when my bladder is full.  After I go to the bathroom, it is hard to fall back asleep while he kicks so we enjoy some quality time together.  I'm trying to be thankful for all the time I have with him, even at 4 am.  Thanks, buddy!


In other big news, this weekend is Brian's birthday and potty training weekend! (potty training for Nathan, Brian is pretty good in that department)  So far this morning, Nathan is doing great.  4 trips to the potty and still dry undies.  We're hoping to get him at least day trained because he has to be potty trained for preschool in the fall.  Since we'll be spending a lot of time in the NICU all summer, we figured we better start this process sooner than later! 

I've been doing a lot of research and there is one thing in particular that makes me rather sad and that is that I won't get to hold Isaac for possibly weeks after he is born.  I know it is more important that he is taken care of and breathing well, but I can tell you that holding your baby is all you can think about while you're pregnant and even more so after he is born.  It must be some kind of built-in motherly instinct thing.  Last night as I rocked Nathan and sang him songs, I realized I am also holding and rocking Isaac and that made me smile.  Hang in there buddy, we love you. 

In the beginning... 

 

On January 29th, 2013, we went for our routine 19 week sonogram and hoped for all good news.  We had already done the NT scan at 12 weeks and discovered that it was (most likely) a boy.  All testing so far had shown that he looked healthy.  Brian and I knew to be cautious because just a year before we lost our daughter, Angie, to anencephaly, a fatal neural tube defect.  Our doctor, a maternal fetal specialist, assured us that his baby did not have anencephaly and we were relieved.  He said the feet look great and it's still a boy!  Hooray!  And then he said the stomach was up next to the heart.  Wait, what?  He said its called congenital diaphragmatic hernia and he assured us they could fix it.  He printed out a chapter from one of his books and immediately sent us across the hall to the pediatric heart specialists.  He thought there might be something wrong with the heart as congenital heart defects are common with CDH.  So we walked over there in a daze and filled out paperwork in shock. 

This wasn't supposed to happen, we had such an easy time with Nathan, our soon to be 3 year old, and they assured us that anencephaly was just a fluke.  This baby was supposed to be ok, supposed to help heal the wounds of losing Angie.  We want so much for Nathan to have a sibling to grow up with, but we are blessed just to have him. 

 

I layed down on yet another table and the nice doctor did an echocardiagram, where they look at the fetal heart.  The baby wasn't in a good position but they thought that the main arteries might be switched.  I watched him move around on the screen and felt him kick.  He looked perfect to me.  They couldn't see very well so we were instructed to come back the next day. 

 

We headed down to our next scheduled appointment with my OB-GYN and cried in her office.  She said she was shocked as well, this wasn't related at all to anencephaly.  She said we could get an amnio to test for chromosomal problems and we decided that night to get that procedure done the next day. 

That night we read a lot and discovered that CDH has a 50% survival rate.  Some hospitals will say they have a higher rate, but they may not count babies born stillborn or with other congenital problems.  How could something like this be happening again? 

The next day we went back to the heart specialists and two doctors looked closely and decided nothing was wrong.  The heart was pushed to the right side because of all the other organs, but it looked great.  Big relief!  We headed over to the maternal fetal specialist and had the amnio done.  This is not a fun procedure!  But we all made it through and I went home to rest. 

We scheduled an MRI so they could look more closely at the lungs and other organs that are hard to see on a sonogram.  We had to wait until 22 weeks to have that done because he was still so small.  So for two weeks we waited and read a lot and tried to focus on Nathan and work.  We decided on the name Isaac.  It means, "he will laugh" and we really hope this baby will laugh one day.  The story of Isaac in the bible is very interesting as well:  http://en.wikipedia.org/wiki/Isaac

There are several things they look for in the MRI:  location of the liver and size of the lungs.  They look to see if the liver is up in the chest cavity.  If more than 20% of the liver is "up", the survival rate is generally lower.  If the lung to head ratio is less than 1, the survival rate is generally lower as well.  However, there is a lot of debate about these two indicators because a lot of the time, you don't know how well the baby will do until he or she is born.  Sometimes babies that they thought would not make it, do very well and thrive.  And sometimes the babies that they thought would be just fine, don't make it.  Also, the lung to head ratio can change based on who is doing the measurement and when during pregnancy it is being done.  This is why they say 50%, because they just don't know. 

We went to the MRI last Thursday the 21st.  I had never had one before, but it wasn't as bad as I thought it would be.  But let me say, it is hard to breathe normally when you're in a small metal tube with loud noises going on around you!  I could feel Isaac moving around and kicking and I tried to be calm for him.  Afterwards we met with the fetal radiologist, Dr. Twickler, who showed us the MRI images.  She said that the brain and spine all looked great.  The stomach is indeed in the chest cavity, along with some intestines and a portion of the liver.  They were still doing calculations on the lung to head ratio and the percent of liver but we should get those the next day when we went back to meet with Dr. Weiss, the maternal fetal specialist.  I knew that the liver up was bad, but we both prayed that it would be less than 20%. 

The next day we went to see Dr. Weiss and he said that the lung to head ration was 1.14, which is better than 1, but not as good as 1.4 where they like to see it.  He said the liver up percent was 16%.  Neither number is great, neither indicates a lower than 50% chance.  We are still waiting on the microarray results which should come early this week.