Tom and I met with Dr. Su (the pediatric cardiologist) today at Primary Children's Medical Center. I had a lengthy fetal echo of the baby's heart and a brief meeting with Dr. Su afterwards. Things look the same as last time, which is, the baby has Hypoplastic Left Heart Syndrome, but they do not see any other complications at this time. We met with a nurse coordinator Kelly, who took us on a tour of the Pediatric ICU. We saw a baby there who was 11 days old and hooked up to all sorts of machines and monitors. A few things we learned on our visit:
--I will possibly get to hold the baby after birth, if so, not for very long before they whisk her away to the ICU
--She will have surgery between 3-6 days old depending on scheduling.
--The surgery will last between 5-6 hours. Babies rarely die in surgery, the crucial time is a few hours post surgery and the following week afterwards.
--She will be in the ICU for about 4 weeks, most of that time, hooked up to many, many machines and we will not be able to hold her. Then onto the 3rd floor where I will be able to learn how to take care of her (she will be there about 1-2 weeks)
--The ICU is in 'lockdown' until the end of the cold and flu season (end of April) and our children will not be able to see the baby at all. (SOOO SAD about that!!)
--She will be in the hospital for approximately 6 weeks and will be discharged with an oxygen tube, feeding tube and several medications.
We got to visit the 3rd floor and meet Brynn Homer who has a baby (Alex) with HLHS, who completed his second surgery about 3 weeks ago and is having a few complications. It was good to finally meet Brynn and see little Alex in person. He is so cute!!
I don't need to follow up with the pediatric cardiologist again before birth. Yea, one less doctor visit!
5 comments:
That is great that everything is looking good still. And that is nice you don't have to see the doctor again until birth. Thanks for the updates!
Hey guys, we have been thinking about you. Sounds like you have an incredible support system! Our thoughts are with you. Thanks for keeping the blog updated--hope to see you this summer! Shannon and Norm
Wow, it sounds like it's as good as can be right now! Congrats on that! So, sad to hear that your other kids won't get to see the baby in the ICU. That stinks, but I guess it's a great precauion the ICU takes.
Good Luck & hope it all turns out well!
We have never met, I think I e-mailed your husband awhile back...we also have Dr. Su as our Cardiologist,he started just after our daughter Brinley was born,(2004) we think the world of him as he has always been as honest as he can about her condition. We also met Brynn Homer before she had Alex, they were diagnosed before birth as well...we have all learned from one another as we have gone through these trials with our children. I hope that it is o.k. that I have visited your site, if not I'm sorry...we pray every night for our heart friends. I have learned so much having gone through this trial with our family and being able to link to others for support and to learn from,its nice to know that there are others out there that have an idea as to what you'll be going through...If you need anything please let us know, we'll be thinking of your family.
Hugs and Prayers,
Mike & Family
We met Brynn through blogging. We are also blessed with a beautiful 4month old who has HLHS/ Disproportionate AV Canal. He has taught us so much already and we feel so blessed he is part of our family. Our prayers go out to your family to better understand your little girls mission and to get through the times ahead. All our love.
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