5/20/09 – DAY 30
5/20 1:46 am - My beloved Susan, I hope your having pleasant dreams that don't include any "beeping" sounds. I adore you. Michael (Michael stayed up with Rebekah all night so I could get a break. He prayed for supernatural strength to make it through the night and be able to function today. This morning he said he was feeling pretty good. :-) I've got the best hubby around and he's the best daddy too!)
5/20 7:53 am - Please keep praying for sweet Rebekah. Her 'episodes' are getting more frequent and worse. She is even having heart decelerations/oxygen drops while awake now too. It is a difficult pill to swallow that God has carried her this far and fixed so many broken things, but she may still only be here a very short time. My heart is just aching right now...
For I, the Lord your God, will hold your right hand, saying to you, "Fear not, I will help you." - Isaiah 41:13
Sweet Baby Rebekah
5/20 4:50 pm - For those who have offered to help with childcare, I have an immediate need and don't have time to find my phone list and call people. Rebekah is going to be admitted into the GHS Childrens PICU tonight - but this is a GOOD thing. Will explain in note to be posted shortly. Need someone to watch the boys at our house while we take her to the hospital. Not sure of time yet but sometime this evening.
The boys spending some time with Rebekah and saying goodbye as we prepared to leave for the hospital. Honestly, we had no idea when/if she would come home.
5/20 Summary from the hospital - Finally, I am getting some answers that I LIKE about Rebekah!
Michael and I have been fed up, stressed out, and sleep-deprived for awhile now. After spending these past few days with constant monitor alerts, we decided the laid back approach to seeing if Rebekah 'grows out of it' is just not working. She is having more frequent desaturations (oxygen saturation in blood) down to as low as 40's, should be in the 90's!) which are resulting in bradycardia (heart rate down to 59 beats per minute - should be in the 140's-160's!) and cyanosis (turning a nice shade of bluish-gray). Honestly, I thought I would be calling 911 today.
After calling the neonatologist who has been reviewing her apnea monitor data, we have come to the following conclusions (which still need to be 'proved' through farther testing).
- the caffeine has decreased her true 'central apnea' attacks where she would just stop breathing while asleep.
- the events that we are seeing an increase of are most likely related to 'obstructive apnea' because her breathing is not stopping during the events. She is desatting, then the heart rate is dropping. This indicates that she probably has a floppy airway or some other type of soft obstruction that is getting worse because she is getting a little bigger and her neck is getting fatter.
- we need some studies done in order to determine a course of treatment (CPAP, Bi-Pap, Trach - in that order).
- She could outgrow the obstructive apnea as she gets bigger and stronger. Leaving things status quo probably is going to result in an eventual 911 call.
Well, we have called the doctors and explained that her events are increasing and we are afraid that we are going to lose her if we wait until next week to do something about this. I don't know yet everything they are going to do, but it will include a sleep study (I think they are about 16 hours long), a swallow test, a ph test to check for reflux, an airway test, etc. They will start her in the children's area but, because of her precarious situation, I am more than sure they will admit her into PICU for these tests. The doctor has warned us that she will be there for probably about 6 days. :-(
So... please pray that we get some POSITIVE answers this time, that we find a solution/management plan for this, that God will continue to bless Rebekah by reversing any damage that may have been done from all the low oxygen levels. We may find out when it is all said and done that this is just who she is and there will be nothing we can do about it. But after having a heart healed, a kidney healed, and so many other things 'right', we will not accept that answer until it is obvious that that is the answer.
We will need help with childcare and some other things over the next week. To make things easier, if you can help out, please put your name and number in a response to this note with what you can or are willing to help with. I am not sure what our status is going to be.
Thank you so much everyone for your love, prayers, and care!
Rebekah getting a CT scan of her brain