Pages

Monday, June 10, 2013

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.

 



Wednesday, June 5, 2013

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. 

Saturday, June 1, 2013

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.

Friday, May 31, 2013

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.  


Wednesday, May 22, 2013

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. 

Wednesday, May 15, 2013

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! 

Thursday, May 9, 2013

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!