Friday, May 15, 2009

Not Sunday (Another Big Spell)

Well, shortly after I posted that Elise passed her car seat check I went back up to the NICU for her afternoon feeding. She was alert for the first bit of her feeding and drank her smaller bottle with her kidney medicine quite quickly. (They separate out a small amount of milk to mix with the medicine since the medicine tastes yicky and so that they ensure she gets all of the medicine if she doesn't finish her whole bottle.) Then she had a small amount of her main bottle before starting to get really sleepy.

Just as I was about to take her bottle out to burp her to (a) see if she had any air to get out and (b) try to wake her up a bit, she coughed a small cough and stopped breathing. I put her in the position to begin moderate stimulation just as her monitors started beeping at the really loud level (there's a basic beep where they're just a bit under or over what the machine thinks they should be at and then there's a really loud beep when they get really out of range). I patted her vigorously and squeezed her sides like they've trained us to do, but she just wasn't coming back. The nurse came and picked her up and tried doing moderate stimulation as well, but Elise just wasn't responding.

At that point, the nurse put her in her bed. She didn't appear to have anything in her mouth and was rapidly turning purple so the nurse grabbed the oxygen and started giving it to Elise. When she still didn't respond, the nurse called to one of the doctors who happened to be in the next room. He and another nurse came running over. Elise was then a very deep shade of purple (much darker than the last time I was there for one of these bigger spells) and completely non-responsive. Just as the doctor went to do whatever it was he was going to do, she started to respond. It still took her some time to come out of it, and the mdoctor put the oxygen back on when they thought she was slipping into the spell again but she didn't stop breathing fully again. She just did quick shallow breaths for a while before regulating. After she was seeming to be completely done with the spell, I held her for a little over an hour. This time I didn't make it to the car before crying...I just held her and prayed and cried.

We are so thankful that these spells are happening in the hospital and not at home. Should she have one like this at home, we would have to do CPR and she would then need to be readmitted anyway so we want her to take her time in growing before coming home. Her doctor for today was on call last night so she had left when this happened, but the nurse documented the spell and the doctor who came over will talk with her doctor about the spell tomorrow. When the nurse asked me how I felt about it, I told her that we definitely want to wait at least another 4-5 days to ensure she doesn't have another big spell. I'm not sure we'd be ready even then because we really want to make sure (or as sure as we can be) that this isn't going to happen at home.

So that's the news. Please continue to pray for our little girl. She's trying so hard and seems to just need more time.


Heather and Travis said...

I am so sorry that Elise had another spell. I am not a doctor by any means, but I was just wondering if they think she might have reflux. Especially since the spells seem to always happen when she is eating?? Just wondering.

I will continue to pray for all of you. I know how difficult things are and I know you want her home more than anything, but it can also be so very scary. Just know that when the time does come God will make sure you are all ready and prepared.

Anonymous said...

I am so sorry for the setback and will surely continue prayers for baby Elise and all of you.
I surely agree with your wanting her to remain in the hospital until they are positive these spells will not continue to be a problem. I know you are disappointed about her homecoming, but when that happens you will want to really enjoy her and not be so worried. You are so brave and I pray God will continue to bless all of you and make Elise completely well soon.
Hugs from Alabama,
Linda G.

Amanda said...

Wow, that's hard. Just when you think you are finally getting off this NICU roller coaster, a sharp unexpected turn and dive. I'm so sorry for you all. I know you must have been on Cloud 9 after she passed the car seat test and it looked like you would all be together in a few short days. And then to have to witness such a scary scary episode. That's a lot of emotions for one day. I'm so impressed with your wisdom in recognizing that though this is very disapointing, it's better that she spend a little more time in the hospital.

Becca Sue Congdon said...

Hey Emily - we'll keep praying for you guys. You're doing an amazing job loving your little girl and trusting God with this situation. We love you and will keep holding you up in prayer.


Sassy said...

Hi Emily. I am so sorry. I know how disappointing it can be to be so close to taking your baby home and yet have another set back.

I know I mentioned this before, but considering she is only having these spells while eating, have they ruled out aspirating? Especially when you mentioned that she coughed first. My daughter did the exact same thing. She would cough or gag and have a spell. They gave us a thickener for her milk and she never had another one. It made feedings a LOT less stressful and also gave us more peace of mind.

Stephanie said...

Oh my goodness! Honestly I can not imagine how that must be..I would have been completely freaking out. How difficult it must be to watch her go through those spells. I'm saying a prayer for Elise tonight that she will stop having them and grow out of that stage very soon!

Trish said...

I will keep you all in my thoughts and prayers. Hoping she has no more spells and that you can take her home this next week.