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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. 

7 comments:

  1. love you dear friend. praying for all of those items and thinking about you a lot. you all have been so strong through this and i have hope it will get better!!! <3 xoxox

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  2. *HUGS* I can't imagine how stressed you must me with all of the ups and downs but it's very encouraging that the surgeon thinks Isaac looks great. Hopefully, both you and Isaac will get some rest tonight and have a peaceful/stable day tomorrow.

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  3. Thanks for the update. Big hugs to you, mama.

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  4. Sending you hugs, and wishing you peace and rest.

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  5. keep the faith,these cdh babies send us on a rooler coaster ride,but they are fighters,baby isaac and your family are in my thoughts and pyays

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  6. Hugs and love from the parkers. dad has kept me updated and sent me the link to your blog
    We continue to say the healing prayer for you at services. somehow i knew jen would be there to help.

    Btw that nathan is so cute!

    Myrna and Steve

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  7. Slow and steady win this race and sometimes the delays to surgery can be frustrating. Truly they are looking for that "window of opportunity" for it - and these medical teams just "know" when that is far better than us. It is good they are letting Isaac lead this dance too. It is wonderful that he is without ECMO and his surgeon is so hopeful. Keep your faith - we will keep the thoughts and prayers coming!

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