5/13/09 – DAY 23
5/13 6:52 am - Rebekah had a great Tuesday - day and night. Only a few minor episodes of apnea (as opposed to Monday which was one event after another). Michael even sacrificed his night to let me sleep. We're off to the pediatric cardiologist this morning. Thank you so much for your prayers...we do feel them working and God has brought Rebekah so far already.
5/13 2:16 pm - Well, the cardiologist has confirmed what we've known to be true - Rebekah's hole in the heart is not there and her heart looks great! There is a small abnormality associated with her aortic valve (Bicuspid valve that 30% of the population has), but nothing that should cause any issues. In fact, we do NOT need to go back to the pediatric cardiologist again unless sometime in the future we start to hear a murmur associated with the valve.
5/13 3:51 pm – Wise words from a very godly friend of mine: We thank God for His will and His providence. Sometimes it is healing....sometimes it is the cross...both are gifts from Him to us...out of love.
5/14/09 – DAY 24
5/14 3:10 am - My Mom leaves Sat after being here for 5 weeks, and I am very sad. She has been such a great help and hasn't complained once about taking care of my boys, folding laundry, cooking a meal here and there, doing the dishes, taking care of my plants, doing homework with the boys... What am I going to do without her? :-( I love you Mom! Thank you!!!
5/14 9:12 pm - Rebekah had her pediatric appt today. She weighs 4lb 15oz! She is gaining like a 'normal' baby. :-) We are going to up the caffeine citrate a little bit and see if that helps at all. In the mean time, the doctor will consult with some colleagues and see if we can come up with some other options for addressing her apnea / bradycardia / desats. There isn't much we can do right now other than pray that she continues to respond to stimulation when having her events. And they occur frequently during every day. But right now she's looking good, feeding well, growing well and getting a pudgy face! No more cute little porcelain doll looks.
5/15/09 – DAY 25
5/15 4:35 am - Someone told me about some SIDS-type device that either is a special mattress or connects to your mattress/crib and every so often it shifts slightly. I have googled and googled, and can't find anything remotely like this. Anyone ever hear of this? I'm thinking this would be great for infant apnea and a constant stimulation that might prevent attacks. This would be an awesome thing to invent for paranoid parents too!
Some friends responded back with devices that might help, but no mattress shifter. The Respisense looks pretty cool though - a diaper vibrator. :-)
- Respisense Movement Monitor
- Babysense V - Infant Movement Monitor
- Movement and Sound "Angel Care" Monitor
5/15 1:25 pm - What is up with opthalmic migraines? I wonder what causes them. Anyone else get these? All I can say is they are very strange. But better that than a full-blown, head-splitting migraine! (I have had 3 of these in the last few months, never had them before in my life. Think it might be stress?!)
5/15 8:24 pm - Michael - Our little princess has slept 3 hours without setting off her apnea alarms. It gives me hope that she could get past this too. PTL!! l
Rebekah with her doting father, Michael.
Rebekah holding Daddy's hand.
5/16/09 – DAY 26
5/16 5:11 am - It didn't last, but 3 hours was still a nice reprieve from the alarms. :-)
5/16 5:41 pm - Rebekah made a public debut today. We took the whole family to two birthday parties, one at Monkey Joes, another at a firehouse. Her monitor alarms were not too loud at either place which will make it easier for us to take her to 'loud' public places. But, unfortunately, she did set off the monitor quite a bit all day long. :-( On a positive note, I am pretty sure she tipped the scales today at 5 pounds even today!
5/17 8:00 am - We're off to church to see our wonderful brothers and sisters and Christ! This was Rebekah's first trip to church. We (Rebekah and I) spent the time in the Mother's Nursing Room so her monitor wouldn't send everyone out of the service like a fire alarm. The trip was stressful because she can't sit in the carseat without setting off the alarm. But the time at church went okay. Living with the monitor going off has just become a reality to our everyday life...
5/17 1:48 pm - I lost my keys at church today. :-( But when you're feeling a little blue, homemade chocolate chip cookies from a friend always helps brighten the day. Thank you to our many many food angels that have been helping us out. I so appreciate all of the meals!
(5/21 update - Guess what, Michael found my keys...right where he put them. ha ha. See what sleep deprivation does for you?)
My Mom with me, Josiah, Jeremiah, Rebekah, Elijah and Isaiah.
My mom giving Rebekah a kiss goodbye before leaving for the airport.
After my Mom left, we made our first family fun outing with Rebekah. The boys went to two birthday parties. The first one was at Monkey Joe's. Here they are all going down the slide together.
The second outing this day was to a birthday party at a fire station. Josiah was having a good time hamming it up for the camera.
At one point this afternoon, Michael called me and the boys to come outside. These strange looking turkey-like birds were in our driveway. The boys followed them across our neighbor's yard and tried to feed them. We later learned these are guinea fowl. Apparently they taste like chicken and eat spiders, ticks, fleas and other creepy crawlies.
5/17/09 – DAY 27
5/17 10:30 pm - Rebekah had a rough day today. She was totally wiped out and wouldn't wake up for feedings - which meant using the N/G tube and dealing with lots of A/B (apnea/bradycardia) events. I had a mini-breakdown over lack of sleep and Michael sent me upstairs for a blissful nap. Rebekah then 'woke up' late afternoon & has been fairly quiet since and 'behaved' for the Heatons as they babysat so we could go see Jeremiah sing in church choir.
Care for a medically fragile child - I don't have any official respite care - just a friend here or there that has some medical background and can feel comfortable enough watching a baby that constantly sets off her A/B monitor! ;-) Here in SC, Rebekah qualifies for Medicare Tefra (which will take 3 months to get), then we can apply for some MR/RD waiver (for SC) that will get us up to 60 hours of in home nursing care per week. Woo hoo! But that is ONLY if they consider her needy enough and it takes a long time after Tefra kicks in… so I am looking at probably next year for any care relief.
I hope I can last that long (and Michael).
For those in similar situations, how do you manage the sleepless and stressful nights?
Rebekah getting an N/G tube feeding.
Our church had a children's choir concert this night. Here is Jeremiah (on the left end in a blue shirt) singing for the concert. A friend from church (who used to be an EMT) came to our house and watched Rebekah so we could go see Jeremiah's choir perform.
5/18/09 – DAY 28
5/18 5:48 am - Rebekah had a much better night. She went back to the bottle too and is happy to have the N/G tube out of her nose. She did still set the monitor off, but it was all minor stuff (no blue spells). Oh, and I DID FINALLY get a new camera! We went with a Canon SX200IS. So far, we're loving it! Takes great pictures and has a lot of good features.
5/18 5:55 pm - Josiah had an emergency run to the doctor - he woke up from his nap with an ear infection. He then threw up in the car on the way home from the doctor to get his drugs. Lovely. Thank you to Leslie for coming over spur of the moment to watch Rebekah and the other boys!!!! I have no idea how I would've made it to the pediatrician before the office closed without immediate help!
5/18 11:46 pm - I now know why sleep deprivation is a major part in torture practices.
A favorite past time in our house is playing on the Wii. Jeremiah and Isaiah are taking turns playing Outdoor Adventure which comes with a mat. It's a pretty cool game and has many different challenges like log jumping, mine car racing, etc. It's good for a nice aerobic activity as evidenced by Jeremiah's sweaty head above.
Our pretty little girl... Also known as 'Peanut', 'Blue Belle' (for her infamous blue spells), "Beka"