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"! 

 

Such a big guy! 



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.

 

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. 

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! 

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! 

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!