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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!

Wednesday, May 1, 2013

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.