Friday, October 15, 2010

Noah is in NICU

This has been a long happy and sad week at the same time.

Yesterday was their first Dr. appt and we were told that some pre-screening for Noah came back a bit abnormal. I can't get into it but I'm going to actually copy and paste an e-mail Jeff wrote to his best friend.

I wanted to give you an update on the kids.

Natalia is doing great, she is basically back to her birth weight and eats, sleeps, and her bodily functions are all working properly.

Noah, on the other hand, was dealt a big surprise unfortunately. Yesterday was our first pediatrician appointment since we were discharged on Tuesday and even though the pediatrician thought Noah looks great and was progressing well, a blood screening test done at North Shore came back abnormal for hormonal levels that deal with the adrenal gland. We had two separate blood tests done yesterday, and after their results verified the initial data, we were instructed to bring him to the Pediatric Emergency Room late last night. The official diagnosis as of this morning is "Congenital Adrenal Hyperplasia" and could have been life-threatening if not tested for, there is a high mortality rate among boys who get this (1 out of every 5000 boys gets positive reading for some level of C.A.H.)

Boys have no outward appearance of anything wrong, but if untreated can lead to weight loss, dehydration, diarrhea, lots of vomiting, and major heart problems.

Classic CAH reuqires daily medical treatment for life (doc said Noah will probably need it for life over the phone with me), mostly steroids and salt supplements etc. His potassium level was 8 and 8.3 when it should be about 5.5 and his salt level went from 136 to 131, both in the wrong directions when they told us to admit him to the emergency room. From there, they transferred us from LIJ to North Shore's NICU unit where he is now. After drawing two viles of blood at 3 pm and 9:30 pm yesterday, they tried to stick him 6!!! more times for blood unsuccessfully before giving up for the day. They were, however, able to get him IV through his arm to hydrate him before continuing the bloodwork today.

I'm still researching this and will meet with the pediatric endocrinologist to ask questions and go forward with a treatment plan. It is outbound patient services with daily medication and normal follow-ups.

We can't believe our little guy who shows no signs of being sick. He is doing GREAT. If the other blood tests come back how the dr. expects, she says we most likely can bring Noah back home within 24 hours.

What a crazy week this has been, from welcoming our babies to the world, bringing them home, not really sleeping, and then having to deal with this. I can't believe how much love I have for them and how happy and heartbreaking this was for us last night and this morning.


---We are at the NICU right now, they did some more blood work this morning and the results are not on the good side of the numbers so he will probably not be coming home today or tomorrow. We still have to speak to the endocrinologist, she should be on her way back to the hospital. She is actually one of the top endocrinologist in the country that deals with CAH, so our little guy is in good hands.

We appreciate your previous comments and know that you join us in our happiness, now I'll be a little more selfish and ask that you send some extra prayers our way. Thank you.

19 comments:

  1. I am so happy to hear that Natalia is doing well, but of course so sad to hear this news about Noah. He is in my prayers as so are you and Jeff!

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  2. I'll be praying for your sweet boy!

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  3. I'll be thinking about your son!

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  4. Many prayers and blessings are coming your way. For Natalia and especially Noah. I'll pray for mom and dad and the doctors too. Stay strong!

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  5. You are all in my thoughts. I'm so glad that they did the tests and caught it early. ((hugs)) and strength to you.

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  6. Sending you lots of love and prayers.

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  7. Thoughts and prayers for baby Noah (and of course the rest of you as well!) Hope things start to turn around soon!

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  8. Praying for Noah and for both of you as well! As hard as it is keep the faith!

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  9. Thanks Shanny and Jeff for filling us in on the blog. Pat and I are with you in spirit, and look forward to seeing both of your cherished additions real soon !

    Life throws challenges at you when least expected, but Noah is quite lucky to have the strong parents that you two are.... and will continue to be.

    With love and support,

    Grandpa John and Grandma Pat

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  10. ..Just said a prayer for you guys!

    God bless

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  11. Hi Shanny and Jeff. You have been so blessed to have found one another and have traveled on a long journey to finally have in your hands what you have both prayed for so long. Don't give up now. Pray and tell God what you need from him. Be positive and feel in your hearts that only good will come from this. We all love and admire both of you for your strength don't give up. In my prayers and thoughts everyday. Liz

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  12. Oh you two - I am praying like a crazy lady right this instant. I am SO happy that you guys were blessed with wonderful doctors who are taking the very best care of little Noah. North Shore is also a hospital that S is working at... I wish so badly that I was there so that I could help somehow. Since I am not - I am going to pray pray pray!!

    (So glad that Miss Natalia is doing so well... things are going to be okay you two!!)

    xo

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  13. So glad to hear Natalia is doing good. I will keep you guys and Noah is my prayers and I also asked my family to keep him in their prayers as well. I hope your next update is letting us know that you all are at home and well!

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  14. Girl stay strong...and remember you are loved by many....I will def say extra prayers for you and hubby and the babies:) I am glad they caught this early and hopefully you will have a treatment plan and more info soon...I have never heard of this and had to google it...Lots of Love and prayers your way...Take Care

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  15. Praying for your sweet baby boy!!!

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  16. I am so sorry that you guys are having to go through this scary time. I hope you are all home together again very soon. You all will be in my thoughts and prayers!

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  17. Poor Noah, poor you! I can't imagine how hard this must be on you and Jeff. I know how hard it is to bring home one baby, let alone two, let alone one who needs special medical attention.

    I'm so glad they tested for and found out about it and he is getting the care he needs. Hang in there. I'm thinking of you.

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  18. I will be praying for little Noah and also for you and your hubby during this stressful time.

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