Goodbye Isaac

Thank you all for your thoughts, prayers, texts and calls, Facebook comments and messages.  I may not respond to them all, but I have read all of them and truly appreciate them.  Sometimes I wonder if this has all been a dream (or nightmare?).  He was here and gone so fast.

At 2 am Thursday morning we got the call we've been fearing all along.  The neonatologist said Isaac was having another episode of arrhythmias and they had a really hard time getting them to stop and then stabilizing him afterwards.  He was on max oxygen and vent settings and beyond that, there was nothing they could do medically for him.  We needed to come in to see him right away, he might not last much longer.  So I called my mom and she and my sister came over.  Jen drove with us over there as a huge thunderstorm approached.  I prayed to God to not take my baby.  He already has Angie, he couldn't possibly need Isaac too.

When we got there he was stable again but we could tell he had a rough night.  His CO2 level was still high and his saturation levels were low.  He looked pale and sick and not like the baby we knew just a week ago.  We asked about ECMO but they said it wasn't an option for him.  Typically CDH babies have high pulmonary hypertension but Isaac never really had too much hypertension.  When his heart was working right, he did really well.  ECMO is for babies with high pulmonary hypertension because it gives the heart time to rest.  Isaac's arrhythmia problem would not be solved if he went on ECMO, it would only delay the problem and there are many possible disastrous side effects like brain bleeds because they have to thin the blood so much.

So we sat with him and he squeezed my finger and listened to the thunder while we waited for our Dr. Lawrence to arrive.  His color started to come back and he stabilized more but we knew it was only time before he had another episode and he didn't have much reserve left.  Dr. Lawrence arrived and said what we had all been thinking, that it might be time to let him go.  Of course they would keep doing everything they could for as long as we wanted, but it was up to us.  We sat with him for a long time and decided we didn't want him to have more arrhythmias and die that way.  It wouldn't be fair to him.  They had tried every medicine they could to help his heart, and some of them did, but not for long.  I really wanted to hold him, since we were not allowed ever since he was born.  We had him baptized by the hospital chaplain and decided it was time to let him go.

They unhooked him from as much as they could and switched him to a regular ventilator.  We sat and held him for a long time.  It was nice to see him not jiggling from the oscillator and he held tightly to my finger.   We sang to him and told him it was ok to go.  I never got to see his eyes open fully or see him unsedated.  He was gone too fast from this world but he's no longer suffering.  It was the first and last time I got to hold him.  We had a short service with the chaplain at his bed and we will have him cremated.

It's all too much to handle.  If we had known of his heart problems, which could not be seen on the many ultrasounds I had, I would have chosen just to hold him and love him after he was born instead of hooking him up to all those machines.  Babies with CDH only have a 50% chance at survival, add to that a heart problem and the chances are much worse.  We gave him the best chance we could.  I don't have a lot of happy memories of him, partly because he was here such a short time, but mostly because he was always hooked up to machines.  I loved holding his hand and feeling him squeeze it and touching his feet and feeling him push back.  Those first few days when he was doing well and would open his eyes just a little and look around were amazing also. 

We're so thankful for all our doctors who watched us as he grew in me, who had us sent to the best hospital for him, who worked literally around the clock to keep him stable and comfortable when he was born.  They are amazing people.  I especially want to thank nurse Jessica who was with Isaac the most.  During one of his arrhythmia episodes, she rushed to get him the right medicine and her hands started to shake as she attached it to his IV.  She apologized for shaking, and said she just really hoped it worked.  It did, and it made me know how much she cared for him.  One time the pharmacy calculated one of his meds wrong and she caught it.  When he was gone, she cried with us. When we packed up to leave, I gave her a hug and whispered her a question, did we do the right thing?  She said yes, and at the right time.  Thank you, Jessica.

We never told Nathan about Isaac, and I'm thankful for that, even though I know he senses something has been wrong this past week.  We will tell him about his little brother when we are all ready some day.

I am left now with a body that doesn't know my baby is gone and I have to gradually stop pumping and it hurts physically and emotionally.  It takes six weeks for your uterus to return to its normal size.  And most women, me included, still look six months pregnant for a while after baby is born.  That's fine when you can stay at home with baby or go out and carry him around with you.  But you don't have that option if your baby is in the NICU or did not survive.  This is reason 5,324 why you should never ask a woman if she's pregnant.

Thank you all for reading our blog.  I'm not sure if I'll continue to post. I hope I helped spread awareness of this awful condition that affects so many families.  It was really hard for me when I would search for CDH blogs and the baby did not make it.  If you are a mom who just got a CDH diagnosis, you should know that I have no regrets.  It is incredibly hard to watch your child suffer and to force them to be strong, but sometimes it pays off and they survive and thrive.  The hardest part of this for me was the not knowing, even up to the very last day, we didn't know if he would survive or not.  I encourage you to get genetic testing done and get as much information as you can and to participate in the DHREAMS study or another study.  Know all your options, find a good support group, and take care of yourself.  The more awareness we create, the more funding for research to save these babies. 

Some people have asked if there is somewhere they can donate in his memory:

- Breath of Hope has always been an inspiration to me since we got the diagnosis.  They sent us a package and send one to all families of CDH babies.  Elizabeth has emailed back and forth with me for months now and has been an amazing resource, confidant, and friend.
- Socks for Surgery always accepts donations of infant socks
- Ronald McDonald House provides a place to stay close to the hospital when your child is sick
- Donate Blood in Isaac's name.  Preemies often need blood.
- Be nice to someone today, even if they are grumpy or annoy you, you don't know what they've been through.

 

Baby Steps

I was really hoping to post about having a surgery date but unfortunately he took a few steps back the past few days.  Last week at this time we were weaning the oxygen and meds and he looked great.  We were even hoping for surgery this past Monday or Tuesday. But now we're back up to max oxygen and pretty high on the oscillator settings.  Over the weekend he started to get more arrhythmia problems and they've started him on a new heart medicine to try to control it.  Sometimes his arrhythmias don't bother him but other times his blood pressure and his saturation levels plummet and his heart rate swings wildly.  It is terrifying to watch.  He has a sensor on his right hand and one of his foot and they check to make sure he is getting good blood supply to his extremities.  This means his blood is circulating well and his heart and lungs are working.  He seems to have two different heart rates, one around the 160s and one around the 180s and he switches back and forth every few days.  Dr. Lawrence thinks its part of his arrhythmia.  We really weren't expecting heart problems so this has been a lot to handle on top of the CDH.  All throughout the pregnancy his heart always looked great.  And the structure of his heart is great, but when he's under stress now that he has to use his lungs, we're finding his heart tends to beat to it's own tune. 

The past few days have been really stressful for everyone and it is hard to come home and relax.  Everyone says I look tired and I am, but I'm pretty sure every new mom is tired, they're just not sitting in a NICU all day watching their baby struggle to breathe.  Thankfully my wonderful sister is here to drive me and sit with me while Brian has to work.  My generous Mom watches Nathan so i dont worry about him.  Our amazing Aunt Mary Ann, a doctor in nursing, has been a huge help in understanding what is going on, as well as emotional support (I even got a back rub!).  I'm trying to sleep, people, really I am.  The extra hormones are a fun addition to the exhaustion and I tend to cry at everything.  Last night they had to put in a central line so they could get better access to him and it was really scary and I was a mess.  All afternoon he had been having arrhythmias and watching him turn blue and the monitors go crazy and the doctors and nurses rush into the room is so scary.  The good news is that he did well during the small surgery to add the central line.  The kind surgeon, Dr. Thomas, who will be doing his CDH repair was the surgeon to add his central line and they did it right in his room.  Isaac's heart rate and sats were great during the surgery and that is encouraging.

We talked to Dr. Thomas today and I was able to ask him a lot of questions.  He's a very nice guy who only does pediatric surgeries and has done many CDH repairs.  He thinks Isaac looks "great", we just need him to wean down his oxygen and oscillator settings so he can switch to a regular ventilator.  It is hard to do the surgery when the baby is on an oscillator because it makes him jiggle.  Literally, his little belly looks like jello.  We're also trying to switch from one heart medicine to another that will hopefully work better for him.  It is all overwhelming. 

So here is your list of items to pray for:
- lower his oxygen levels down to at least 40% so they can start weaning the nitric
- for this new medicine to stop his arrhythmias
- for his saturation levels to stay in the 90s
- for the kind nurses and doctors who look after him each day
- for his lungs to grow and not be damaged by the ventilators
- for his Mommy to get some rest

Thank you everyone, I really appreciate the thoughts and prayers and I will try to post updates more often. 

Isaac's Room

Holding Onto Mom

The nurse removed the IV which was on Isaac's left hand today and moved it to his head.  This was the first time he was able to hold Mom's finger.

 Isaac's Room

There are several machines that help him keep breathing.  It is overwhelming and a little intimidating.  There are sensors on his foot and his hand to make sure they are getting blood.

Here's a view of the various pumps.  He has medicine for arrhythmia and blood pressure, "food" (lipids and vitamins), and antibiotics.

The middle machine here is the high frequency ventilator and the machine on the left is his oxygen and nitrogen.  The high frequency ventilator helps him breathe easier.  Instead of a normal ventilator that pushes air in and out of the lungs, this machine oxygenates them more gently to prevent damage.  You can see one of his really nice nurses, Cathy, too.  The nitrogen helps his lungs expand and helps him breathe easier.

They keep lowering his oxygen level.  When he first arrived he was at 100%, but now they have lowered it to 40%.  Room air has around 21% oxygen.  So we are taking baby steps in the right direction.  After his surgery, they will need to raise the oxygen again and other meds so he needs room to decline some.  We are hoping the heart arrhythmia can be fixed with medicine and won't affect his overall improvement.  They keep it dark in his room to help him relax.

Isaac Francis Crawford has Arrived!

He's Coming

Memorial weekend is our wedding anniversary. We had a great weekend working on a few home projects and hung out with some friends. I felt tired as usual and I had some Braxton hicks but nothing painful or out of the usual. On Tuesday morning I got up a 1:45 AM to go to the bathroom and got back in bed. At 2:00 AM I felt a big gush and ran to the bathroom and called for Brian. My water had broken and we were only at 35 weeks 5 days! I called my doctor's office and they said to come in so I called my mom and dad to come over and be there for Nathan. I hopped in the shower and packed a little and as soon as my parents got there we headed over to medical city Dallas. My dad stayed with Nathan and my mom came with us.

At Medical City Hospital

The call was from the neonatologist in the NICU who said that all of the ECMO spots are full. This had never happened before at this hospital. They came in to talk to us and said that there's no way to know if he will need ECMO or not, but it isn't a good idea to deliver at a hospital that doesn't have access to it. We knew this and that's why we had chosen Medical City because it was close and was one of the few hospitals in the country that had ECMO. They kept saying it was the "perfect storm" and had never happened before. They needed to move us quickly because I could go into labor at anytime. Once labor starts I wouldn't be able to be transferred. They said the best option was Harris Methodist in Fort Worth because it is connected to Cook's Childrens hospital. But all of the doctors we had met and my OB could not come with us. So all the work we had done was lost, finding the surgeon, touring the NICU, meeting the neonatologists. And I couldn't even deliver with my OB who I trusted and who delivered Nathan and helped us through listing Angie. But we didn't have time to worry about a whole new hospital because I could go into labor at anytime. They started getting ready to put me in an ambulance and transport me a hour away to Fort Worth. Then they said they might have to take out the epidural and redo it there because some anesthesiologists won't work with someone else's epidural. I cried again, this was too much. Thankfully they talked to the doctors at Harris Methodist who said they could keep it in and try it when I got there. Sounded good to me! 

The Surprise

They hooked me up to the baby monitors when I got there and said baby was doing really well. After they hooked up the IV and I started getting some contractions so I decided to go ahead and get the epidural so I could try to rest a little. The epidural is not fun to get, but it's pretty wonderful once it kicks in! So we tried to sleep a few hours. Around 8 the doctor came in and checked me and I was at 2 cm but not having many contractions. They decided to start Pitosin to get labor moving along faster. Once your water breaks, the risk of infection goes up the longer it takes to deliver the baby. The nurse brought in the Pitosin and was about to hook it up to the IV when she got a call. And that's when things got a little crazy. 

The Arrival

They loaded me onto the tiny ambulance gurney and we started the bumpiest, most uncomfortable ride I've ever taken. We arrived, they put me in a nice room, we met the doctors, and filled out all new paperwork. They started the Pitosin and were able to successfully restart the epidural. Whew. I tried to rest while Brian and mom went to lunch. Around 3:30 we met the neonatologist who worked at Harris and would lead the NICU team right after Isaac was born. I had been laying on my right side for a while and they helped me roll over. That is when I had the worst contractions ever. It felt like I didn't even have an epidural. The nurse checked me and said, "oh, you're complete! It's time to deliver!" Isaac arrived at 4:10 PM, let out two little cries, peed on a nurse, and was handed over to the NICU team. They cleaned him up and looked him over and the neonatologist said he looked good, aside from the CDH. They put him in the transport isolate and wheeled him over to me so I could say hi, then they rushed him through the hospital and skybridge with Brian to Cook's. 

In The NICU

They worked on getting him stable and around 9:00 PM I was able to go see him. You can look at a lot of pictures, but to actually see your tiny baby hooked up to so many machines is terrifying. I sat with him and sang to him for a while.  He weighed 6 lbs 6 oz and was 19.7 inches  long.  His first APGAR was 7 and the second was 8.   Brian went home to check on Nathan and I went back over to Harris for the night.

The next day he started having a lot of arrythmias and they couldn't figure out why. They did several echoes and his heart is structurally normal, but it might have a electrical problem. It was really scary for a while because his heart rate was all over the place and there were a ton of people in the room.  Dr. Lawrence has been Isaac's doctor; he's been really nice and informative.  Dr. Lawrence and the cardiologist finally found a drug that helped and he settled down again. Then that night he started having the same problem again and they threatened to put him on ECMO. They tried a new drug and that worked really well. On Thursday, they just let him recover and relax and have been able to ween him off of a lot of oxygen. Today they tried the PICC line again but weren't able to get it threaded just right. He really needs this line to get the meds to his heart. The good news is that he tolerated it well. When they tried it on Wednesday, his stats kept dropping, but today he held steady. We hope to meet with the surgeon today and talk about the surgery to fix the hernia. 

I'm still shocked that my water broke early and sad we are so far from home. But I really think he is at a better hospital. Medical city did less than 10 CDH cases a year, but Cooks does 18-24 a year and a lot more ECMO experience. We are still figuring out the logistics of everything but very thankful he is in good hands and doing well so far.  Thank you all for following our journey and for all the thoughts and prayers.  If you are just now following along and are confused by all the terms we use, please check out the CDH FAQ page.  

35 Weeks and a NST

Today we saw Dr. Weiss and had a non-stress test (NST) for the first time.  The nurse took us to a little room with a comfy chair and hooked me up to the machine with a sensor on my belly.  We sat there for around 15 minutes and listened to his heart and watched the machine plot it out on a little graph.  The nurse said to expect it to go up and down often and that's just what it did.  When he was still it was around 145 and when he moved it jumped up to around 155.  The nurse came in and declared it was, "text-book perfect"!  Then she took us to the other room with the sonogram machine and when Dr. Weiss came in he also said how perfect it was.  Proud parents indeed.  He looked over Isaac and measured fluid and said he looks great, see you in a week!  We think he said we'll probably schedule induction around 39 weeks assuming all goes well up to then.  A week early is fine with me, although I'm scared to let him go!  We keep going each week so he can see if it is better to keep him "cooking" or get him out.  He didn't measure his size this time but said he'll do a growth scan next week.  

A lot of people ask me if I'll need to have a C-section because of Isaac's CDH.  Surprisingly, the answer seems to be no.  Unless he suddenly decides to turn breach or isn't dealing with the labor well, he'll be born naturally.  From the Cherubs website: 

"Unless there is a medical need to have an ultrasound because of other complications involving your health or your baby's health, there is no reason to have a C-Section because the baby has CDH.  Vaginal delivery actually helps the baby's lungs because it stimulates surfactant (the secretions that line the lungs)." 

I think instead of "ultrasound", they meant to write "C-section" but that explains it pretty well.  Here's a really long but interesting article about the history and science of surfactant:  http://www.fasebj.org/content/18/13/1624e.full

We're so happy that despite the diagnosis, Isaac is doing so well.  Next week we see Dr. Weiss and Dr. Ryder again and I'll be excited to make it to 36 weeks!  Thank you all for your thoughts and prayers as we get closer to D-day, we sure need it. 

34 weeks

Isaac is officially 34 weeks tomorrow and today we had another visit with Dr. Weiss.  The past two weeks we went to Dr. Ryder's office and had BPPs with a sono tech.  But today we went to the expert and he measured Isaac at 5 lbs 3 oz (64th percentile).  Getting to be big!  Amniotic fluid was good (sometimes I feel like I'm a car getting a tune-up) and his head is still down.  He could see Isaac "breathing" and moving and said everything looks good, see you in a week!  I asked if he could see how much diaphragm there is, but he said that's hard to see on a sonogram and they look for the breathing movement.  We stopped by Dr. Ryder's office to get blood pressure checked and pee in a cup (both good).  We'll go back to see her again in two weeks. 

Sometimes I think I'm having Braxton Hicks (practice contractions) and other times I wonder if he's just stretching.  I'm amazed that he looks so healthy on the screen and does everything he should be doing, and yet they have no idea if he will survive or not.  I'm guessing this is why 30% of the time they don't detect CDH until the baby is born. 

We had a wonderful Mother's Day lunch with my parents and enjoyed the nice weather (and an afternoon nap).  I keep praying that next year I'll have two adorable boys to kiss on Mother's day! 

33 Weeks and a NICU tour

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!

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: 

 

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. 

 

 



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!

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.