Tuesday, November 10, 2009

NICU Rollercoaster

2 steps forward and 10 back...

When I got to the hospital yesterday morning, expecting to find things as we'd left them (and hopeful that they'd be even better), I was greeted with a huge shock. Maya was in an isolette and on CPAP. From 7am until 10:30am when I arrived, she'd gone from stable to struggling to take a breath. Because she focused so much on breathing, she stopped trying to keep her temperature and, at 8am when she was checked, she'd gone from normal at 5am down to 95. They wrapped her until they could get an isolette warmed and then got her inside. She was slowly coming up and was 97 when they checked at 11:30.

The steroids wearing off were much worse than they anticipated when we'd called for a morning update. The inflammation was just too much and her throat swelled as soon as the effectiveness was gone. They tried upping the litres on her cannula, adding oxygen, but nothing. They were on the verge of reintubation but the CPAP was able to stabilize her. Even when we left late last night, she was still breathing so hard that her little tummy was caving in with each breath.

They are giving her 9 (instead of 3) doses of steroids. She had her first at 11am yesterday and is on a 12 hour cycle. Her hard breathing has caused a patch of fluid to build up in her lungs. She had several sessions of bradycardia and low oxygenation yesterday. It was another day of hell, both for her and us.

Please pray. Hard. She is such a little fighter, but we'd love it if she didnt have to fight so hard for every little step forward.

Pray for Maya. Pray.
at

43 comments:

  1. AnonymousNovember 10, 2009 at 6:50 AM

    Oh the poor sweet darling! Michele I am saying fervent prayers for Maya and hoping for you and Pete that you are given serenity to get through these days xxxx

    ReplyDelete
  2. djordanNovember 10, 2009 at 7:49 AM

    Praying hard...

    ReplyDelete
  3. nikki woodNovember 10, 2009 at 9:00 AM

    I pray for them both on a daily Michele, you are always in our thoughts!

    ReplyDelete
  4. sprogbloggerNovember 10, 2009 at 9:01 AM

    Oh I'm so sorry she's having to work so hard. You're all in my thoughts and prayers - here's hoping this complication goes away soon so she can concentrate on catching up to her brother.

    ReplyDelete
  5. A n TNovember 10, 2009 at 9:06 AM

    Praying for Maya and that things start to turn around for the better.

    ReplyDelete
  6. paulsgirl1297November 10, 2009 at 9:28 AM

    I will keep her and your family in my prayers ! Sending you lots of hugs ,I knwo this is a difficult time for you and I wish I oculd say something to make you feel better, but I am here to listen if you need to talk...

    ReplyDelete
  7. sarahNovember 10, 2009 at 9:57 AM

    Praying commenced. C'mon Maya!

    ReplyDelete
  8. Mother Knows Best ReviewsNovember 10, 2009 at 10:01 AM

    I am keeping you all in my thoughts. Tears and hugs for you.

    ReplyDelete
  9. SuraitaNovember 10, 2009 at 11:26 AM

    Sending prayers for Maya - and the rest of you too!

    ReplyDelete
  10. kNovember 10, 2009 at 11:57 AM

    I'm so sorry Michele. I will keep her in my prayers.

    ReplyDelete
  11. Marie WNovember 10, 2009 at 12:04 PM

    Praying without ceasing.

    ReplyDelete
  12. KristieMcNealyNovember 10, 2009 at 12:09 PM

    I'm so sorry to hear about what a hard time Maya has been having. I hope they get the swelling under control so she can focus on eating and growing!!

    It's never a good feeling to get to the NICU and find things worse than when you left them. Did they even call you?? Ours was very hit or miss about what they thought was important.

    ReplyDelete
  13. AnonymousNovember 10, 2009 at 1:03 PM

    I am praying hard for Miss Maya. {{HUGS}}

    ReplyDelete
  14. TashNovember 10, 2009 at 1:22 PM

    Oh Maya. Hang tough, wee one. Hang tough.

    ReplyDelete
  15. JulietNovember 10, 2009 at 1:44 PM

    Poor sweet Maya. Thinking of Maya and hoping things get easier for her.

    ReplyDelete
  16. RachelNovember 10, 2009 at 1:46 PM

    I'm praying for strength for Maya and peace for you and Peter. I wish I had more to say but just know I'm praying, praying, praying.

    Hang in there...**HUGS**

    ReplyDelete
  17. areyoukiddingmeNovember 10, 2009 at 1:54 PM

    Praying for Maya - and for Bobby, and mom and dad, who are all worried about her.

    ReplyDelete
  18. AnonymousNovember 10, 2009 at 2:10 PM

    Here from LFCA, and thinking about all four of you. What a scary setback, one which I hope is a thing of the past soon! Heal, Maya, heal.

    ReplyDelete
  19. Catherine WNovember 10, 2009 at 2:37 PM

    Oh Michele. I am praying for your little Maya. I hope that the steroids helped. That tummy caving in breathing is just so painful to watch.
    J had a swollen throat from her long intubation and the steroids really helped her get off the ventilator.
    I hope that Maya will be off the CPAP and out of the isolette soon. Thinking of you. Much love xoxo

    ReplyDelete
  20. k@laklyNovember 10, 2009 at 3:15 PM

    Holding you and Maya close in my heart.
    xxoo

    ReplyDelete
  21. MFA MamaNovember 10, 2009 at 3:20 PM

    Oh no! I am so sorry to hear that sweet Maya is still struggling; I was worried that the steroid wean might be tough for her but hoped I was just being paranoid on her behalf (it's strange how attached you can get to Internet nieces- and nephews-in law via blog!). Here's hoping she can turn this around, maybe with a slower steroid taper? And that the fluid goes away and she is able to return to feeding and growing SOON! Have you asked the neonatologists whether there is any concern with her adrenal function? I ask because I personally have had a bad experience with adrenal "shock" coming off of steroids and I'm sure that as a preemie her adrenal glands are as immature and delicate as everything else. When I had the bad reaction I accumulated fluid in my chest but diuretics and a slower taper-down from the steroid treatment reversed it completely. I'm hoping that what Maya is going through is a similar phenomenon since I had such a good resolution myself.

    How are YOU holding up with all of this? You must be so worried, and I've been there, and it stinks :(

    ReplyDelete
  22. Christmas with KaseyNovember 10, 2009 at 4:33 PM

    You can do it baby Maya!! Many prayers for you and your family!!

    ReplyDelete
  23. quadmomNovember 10, 2009 at 4:50 PM

    Praying so, so hard for poor little Maya. I am so sorry this is happening.

    ReplyDelete
  24. neaneahNovember 10, 2009 at 4:55 PM

    I'm so worried about Maya's throat it seem all of her trouble started after the tube was placed I had a sore throat so bad once that I had to go to the hospital and they gave me steriods and it was instant releif so I'm glad their going to give her more this should get her out of pain so she can go back to just getting chucky I'm praying for Maya

    ReplyDelete
  25. Once A MotherNovember 10, 2009 at 5:15 PM

    Sending prayers to Maya for strength and healing. She, and your entire family, are in my thoughts today.

    ReplyDelete
  26. MichelleNovember 10, 2009 at 5:20 PM

    So sorry! As always I am praying hard for your precious little ones and you! ((HUGS))

    ReplyDelete
  27. AmandaNovember 10, 2009 at 5:26 PM

    Praying right now! Keep up the fight, Maya!!

    ReplyDelete
  28. AnonymousNovember 10, 2009 at 5:28 PM

    I am praying for Maya *huge hugs*

    ReplyDelete
  29. SophieNovember 10, 2009 at 5:50 PM

    So sorry guys. I hate that rollercoaster ride. :(

    I will be sending many many wishes/prayers/hopes for a quick recovery for Maya.

    ReplyDelete
  30. BluebirdNovember 10, 2009 at 5:50 PM

    Ah, honey. Praying so very hard. Praying your little girl can just rest and recover, she shouldn't have to fight to much.

    Holding you and Peter in my thoughts as well. ((Hugs))

    ReplyDelete
  31. MistyNovember 10, 2009 at 6:19 PM

    How very frightening....

    Praying.....

    ReplyDelete
  32. MistyNovember 10, 2009 at 6:20 PM

    How very frightening....

    Praying.....

    ReplyDelete
  33. LeaNovember 10, 2009 at 8:40 PM

    Oh Michele - I was stunned to read this.

    Praying.... so hard for Maya, for you and your family.

    xo

    ReplyDelete
  34. RebaNovember 10, 2009 at 8:58 PM

    thinking of you all, especially maya. stay strong little one.

    ReplyDelete
  35. Jimmie's Auntie AmberNovember 10, 2009 at 11:23 PM

    Praying all the time for sweet Maya. Lord be near, bring strength and complete healing of little Maya's esophagus.

    ReplyDelete
  36. Busted TubeNovember 10, 2009 at 11:38 PM

    You and Maya are in my prayers and thoughts. Lots of love and hope headed your way.

    ReplyDelete
  37. WadeNovember 11, 2009 at 12:12 AM

    De-lurking to say I hope Maya improves soon. We are pulling for her.

    ReplyDelete
  38. AnnalienNovember 11, 2009 at 1:47 AM

    Oh, honey, I am sorry about the setback. I pray that she will soon be her old self again and that she will be going home shortly afterwards. Go Maya!

    ReplyDelete
  39. MaloryNovember 11, 2009 at 1:54 AM

    I will keep you all close in thoughts & prayers especially Maya.

    ReplyDelete
  40. Debby@Just BreatheNovember 11, 2009 at 2:04 AM

    I am praying for Maya. I'm so sorry she is having these issues.
    It's not fair, her poor little throat. May God heal her quickly.
    ((HUGS))

    ReplyDelete
  41. HollyNovember 11, 2009 at 5:43 AM

    I am sending up a prayer for her now.

    ReplyDelete
  42. Aunt BeckyNovember 11, 2009 at 12:37 PM

    Praying without stopping.

    ReplyDelete
  43. one-hit_wonderNovember 11, 2009 at 3:49 PM

    Prayer for Miss Maya.

    ReplyDelete