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.