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Saturday, December 5, 2009

Today is a Gift!

12/5/09
On our way to Ohio Thanksgiving week, the boys were watching Kung Fu panda and the wise old master said "Today is a gift, that is why they call it the present." I changed my facebook status to see if anyone could correctly name the source of that quote and, much to my surprise, it WASN'T the master, it was Eleanor Roosevelt! ;-) It actually comes from a longer poem. But the part I love is:

Yesterday is history.
Tomorrow is a mystery.
Today is a gift.
That is why they call it the present.
- Eleanor Roosevelt


Speaking of gifts, Isaiah had a birthday party last night at a local inflatables place for preschoolers called Giggle Bugs. OK, his birthday was 11/28, but we believe in procrastinating in our house. He had a choice of a party, or a present. He's not stupid, he picked the party so he could have lots of presents!

Anyway, we were all there, including Rebekah. A lady came up to me at one point and asked if I minded telling her about Rebekah. Rebekah was in the car seat in the stroller decked out with her 'cranial remolding orthosis' (Starlight side-opening band helmet), AFO's (ankle-foot orthodic splints - Jump Start Bunny in pink, of course), and, of course, her trach with the big old HME sticking out. She normally draws looks with just the trach, but today, she looked like a space cadet on a moon walk mission! (Couldn't resist the pun on inflatables/moon walks) :-) So I spent a few minutes telling her Rebekah's story and gave her my blog link so she could keep up with her. (Not that my blog is current, but I guess that will be my New Year's resolution! Then again... maybe not.) She asked me if I minded the looks (stares) and questions from people about Rebekah and I said that I didn't. I said that it gives me a chance to glorify God for our sweet precious gift, and to educate people on trisomy 18. (I don't expect anyone to feel sorry for us because of Rebekah. We love her so much and do believe she was given to us for a reason. So I really never have an issue with educating people, and I hope it is a door to discussing God with them.)

Later that evening, I relayed the Giggle Bugs conversation with Michael, and he said that when you only expect 24 hours (or less), then every day is a gift! If you recall, Rebekah's beginning was so rough, she stopped breathing before the cord was even cut at birth. The first several months were very, very hard. Today, when we think about Rebekah and all that she has already overcome, we certainly believe with all of our hearts that each day with her is a gift. And that is despite the countless doctor visits, hospital visits, calendar/lifestyle changes... (You see, when you have a 'medically fragile child', your time is filled up as care-provider and nurse, you leave the house less, invite fewer people over, inevitably miss things because you don't want to bring your child, have less 'me-time', and you can't just have anyone watch them... Lots of people probably really don't think about the massive family changes that result when having a special needs child. The divorce rate for couples with a special needs child is VERY high and scary!) But really, because of where our 'center' is based, this current life has become our new 'norm' and we've adjusted and move on happily - because it is so much better than the alternative!

But the whole conversation really got me thinking...

As much as Rebekah's life has caused what others would see as inconvenience and heartache, we have, indeed, celebrated everyday with her and do not complain because we feel blessed. But what if I applied that concept/behavior to my WHOLE life? I mean, setting Rebekah aside for a minute, what is the focus of my own attitude and view of my personal life?

Well, I don't do such a great job there. I am frequently unhappy with the way things go, stressed out and frustrated, wishing I had this or that, or unhappy with someone else in my life. But WHY? Well, I guess in my mind, I have an expectation that these other events and people in my life will be there for the long haul. So I have 'time' to be mad about it today because I can do something different tomorrow. But the truth is, NONE of us are guaranteed another day!

In fact, my cousin's ex-wife tragically died this past week from a head trauma falling down steps outside her house. She was in her early 30's. Her four year old was with her at the time. I am SURE she didn't wake up that day thinking 'today could be it!' And I don't know about her, but I know that I personally don't live each day like it could be it.

But between her accident and having this gift conversation with Michael, I've been thinking real hard about my attitude of gratitude. There are some people that I am harboring anger towards, there are some personal behaviors I have not been too happy with, and I certainly have not been modeling to my kids the level of gratitude I expect from them! So I am going to try to start each day making this part of my morning prayer - that I would truly believe and live like today is a gift!

This is the day the Lord has made, Let us be glad and rejoice in it.
Psalm 118:24
Each day truly is a blessing and a gift! And I am going to be more committed to living each day like I really believe that statement.

Don't waste your life thinking you'll fix it tomorrow, deal with your hurt tomorrow, get right with God tomorrow. TODAY is the gift. So why don't you join me on the quest to appreciate today for the blessing it is...

Teach us to realize the brevity of life, so that we may grow in wisdom.
Psalm 90:12

Wednesday, November 25, 2009

Closure

My mother-in-law, Mary, (who is in her 80's) tells me about her friends and a cousin that have experienced a miscarriage or still birth. When we were pregnant with Rebekah, she was very concerned for us because she didn't want us to have the same experience. You see, back then it was extremely common to whisk the baby away before the mother could even lay eyes on the baby. Several of her friends has wishfully stated things like "If only I had gotten to hold my baby.", "If only I at least had a picture." Her cousin, over 50 years ago, had such an experience and, to this day, still cries when she thinks of her baby! She still says, "I never even got to hold him."

Yesterday, another beautiful t-18 angel left this earth. Hope was her name, and she was loved by many. There is a part to Hope's tale that makes me very, very angry. The hospital did not allow her parents to take pictures of her after her birth! Is that not insane? Now, I realize that I am in the USA and Hope was born in South Africa, but the psychology of grievance does not change no matter what country we are in, what socio-economic class we may belong to, what age we are, what race we are... And in order to mentally process 'death', we need closure. Sure, Florisha (the mom) got to see her and hold her, but to not be able to have any keepsakes to take is just plain WRONG! So this left me with a very bitter taste in my mouth going to bed last night.

I did find out today that they are going to let her see and take pictures of Hope tomorrow. But it is still insane that this was not the case yesterday.

It's little things like this that make me really worry about the human race. Are we so far gone, so cold-hearted, that we cannot recognize the beauty and wonder in each of God's creations? We are all fearfully and wonderfully made - whether 'perfect' or 'imperfect', and each has a place and purpose on this earth. No MAN should make a determination of the value of any given life. It is not our place to do this.

Thursday, November 19, 2009

Grins & Giggles

Three weeks ago, our SC Community Long Term Waiver was finally approved for 30 hours of nursing care per week! Life is finally getting back to a more 'normal' basis AND I now have another person here devoted to nothing but Rebekah's care and well-being! Her nurse, Becky, has been a godsend, and she is doing a fantastic job of working with Rebekah on all of her therapies. Rebekah is getting so much more one-on-one help and has progressed so much in just the last three weeks!

Just one of the areas Rebekah has really blossomed in is her response to things. Before, we had to work super hard to get even a little smile out of her. She is now grinning and giggling at people, things, her brothers getting yelled at (no kidding - she smiles everytime they get in trouble!), she will follow us with her gaze, smile at someone who unexpectedly walks by, and let us know when something tickles her fancy. She is such a happy little baby now, it can't help but make your heart sing praises when you see her!

Here is a video of her. Remember, because of her trach, you cannot hear her. But if you could, I KNOW you would hear laughter!


We are so blessed to be able to experience this! Everyone in our house is now full of grins & giggles too. :-)

Please take a moment on youtube to rate the video and leave a comment so that others traveling this road will find Rebekah's video on a search and will have some positive things to find when looking for trisomy 18 or t-18 resources. (You can get to the youtube video by selecting the blog title - Grins & Giggles.)

Thursday, November 5, 2009

A Different Dream for My Child

It's been an incredibly draining 6 month roller coaster ride. We have been in the hospital 3 times now, and may be looking at a fourth time as sweet Rebekah seems to be getting sick again. I am not sure I am ready for this again.

I was in a Christian bookstore today with my friend Mindy looking for a Bible study to do. I came across a book called A Different Dream for My Child (Meditations for parents of critically or chronically ill children). I haven't even read the first chapter but browsed to the chapter prayer which caught my attention in the bookstore:
"Dear God, my heart is breaking for my child today. My spirit is crished by fear of what lies ahead. I can't find words to pray, Father, so please pray for me. Be near to my child and be near to me today as your word promises."
The Lord is near to the brokenhearted
And saves those who are crushed in spirit.
Psalm 34:18 (NASB)
This is a book I think all of my T-18 Mommy friends need to get too. Also, please visit the author's website for more information, books, and resources! Jolene Philo is a wonderful Christian author!

Wednesday, November 4, 2009

Why me, Lord?

We got back from a fun weekend of family, candy, fun, and - yes - a little rain for the trick-or-treating activities. Our little Josiah took the stamina prize by outlasting most of his big brothers around the neighborhood. I couldn't believe how far he walked! And he managed to get more candy than his brothers with fewer stops (we were at a slightly slower pace so he did miss a few houses along the way) because of his absolute cuteness. :-)


Our kids: Josiah - the duck (he got a little upset when people called him a chicken, lol!), Isaiah - the Indian (this was a school Thanksgiving concert costume, not even a Halloween costume! But he just didn't want to put anything else on...), Jeremiah - Stitch, Elijah - The Headless Horsemen. My nephews are Ben (football ball, can't remember team) and Nick (the 'Unknown Ghoul' with the red eyes).

Josiah and Rebekah


Rebekah, the pink leopard...

On Sunday, we went to my brother's church in GA so that their small group and a few friends that knew about Rebekah could finally see who they have been praying for for all these months. One lady was actually brought to tears upon the sight of Rebekah and was happy to meet our little miracle.
When we arrived back in SC, Michael and I were talking. He looked at me and said, "Did you ever ask yourself, 'Why me?'" I gave him a quizzical look thinking to myself - oh yeah, every day! But I was thinking about the stress and chaos we have now.
Michael continued, "Did you ever ask yourself 'Why me, Lord? Why have you blessed us with this incredible little girl who can bring a grown women to tears (of joy)?'" Wow! I just love my husband! His optimistic perspective on life has done a lot to change me from a glass-half-empty kind of person to a glass-half-full one.
I agreed with him and thought about this for several days now. Despite the ups and downs and inevitible future that lies before us with a child considered "incompatible with life", we truly are blessed. I do not, and cannot, comprehend why we have been chosen to be her earthly caregivers. And it doesn't really matter either. For she has made me a better person, and I love her beyond words. She has inspired MANY to prayer and care, and has been a blessing to far more people than just us.
So I do ask, "Why me, Lord? I feel so insignificant, so powerless. Why have you blessed ME with this incredible gift? Please, help me to use Rebekah's life to bless others as well. Please use her to bring people closer to you. "
He answers that prayer every day.

Monday, September 7, 2009

Another Holiday, Another Hospital Visit


Rebekah - 140 days old on 9/7/09.
Checking out the mobile in her hospital room.

I hadn't blogged all summer partly because my life with 5 kids (including my lovely special needs sweet baby girl) has been insanely crazy this summer, and partly because I never finished Rebekah's LAST hospital stay story and I did NOT know that you can post entries to blogger and later change the date to rearrange the order of the posts! So I have been waiting for free time that never occurred to finish the June hospital stay story when I could've been blogging all along! Oh well, I'm not really much of a blogger anyway!

So here it is Labor Day weekend and, surprise, we are back in the hospital! Over the last week and a half, Rebekah's mucus secretions have been getting progressively worse and we have had her on oxygen pretty much around the clock. That is not normal, but she didn't have a fever, the secretions were all clear, and there wasn't really an obvious sign of illness.

Sunday morning, Rebekah seemed to be working hard to breathe. Her SATS (on fairly high oxygen for her) had been hovering in the low 90's and I couldn't really get them up. She was being suctioned probably 4-5 times an hour, and at night we were having to suction much more than usual. She used to go pretty much to whole night without suctioning.

I called hospice and asked them to send a nurse to assess her. The supervisor answered and had a preconceived notion that Rebekah's symptoms were related to congestive heart failure. I was confused by this since she got an A from the cardiologist months ago and we were told not to come back! So she sends over a nurse (the on call nurse who had never seen Rebekah before), who listens to Rebekah and agrees that she is working much too bard to breathe. She explained that she heard fluid in Rebekah's lungs and heart and that she probably did have a congested heart. I had to either take her off hospice and take her to the ER, or manage her care at home through hospice care (expecting her to progressively get worse).

My heart, at the point, dropped into my stomach. Worried if we had done something terribly wrong by letting this go all week, I asked how bad she thought it was. She said she didn't think it was too late to reverse it, but that the congestion was probably due to excess fluid, kidney problems, etc. Oh yeah, and the fact that Rebekah has trisomy 18 and that is a common problem. (Think she may have talked to the supervisor and come with a preconceived notion of what she was dealing with?) While she was very nice and professional, she did pretty much end the conversation with telling me that if I take her off hospice to go, I probably will want to switch her back to regular home health care afterwards because those nurses would be in a better position to do blood draws, etc from home. I think I was getting the 'don't come back' speech.

I kicked it into high gear and got her off to the hospital while Michael took the boys to church. We tossed around having all of us go, but it was a good thing that didn't happen because the hospital has prepared for a flu pandemic by not allowing anyone under 18 to visit any of the pediatric floors.

I called the doc on the way to the hospital - got to bypass the ER and met him in the hospital lobby. He discussed her status with the ped floor docs and they decided to admit her to the Pediatric ICU due to her trach and the excessive suctioning requirements. Oh, did I mention that he almsot laughed at the congested heart comment? He said there wasn't anyway to determine if what we were hearing was congested heart because it was too difficult to differentiate the noise from the lungs vs. heart and that it was most likely just the lungs.

Well, a chest x-ray, several blood tests, and multiple other illness tests later, we are still in the hospital without an exact diagnosis (probable virus - just has to run its course), but we do know that it isn't any of the 'big' ones (especially for a trach baby) like pneumonia, flu, rsv, etc.

So now we just wait... hoping she starts to show some improvement so we can move her care to back home.

My baby girl is strong and will get through this just fine. But I really hope we have not started 'another holiday, another hospital visit' trend!



Saturday, September 5, 2009

A Little Time For Pampering...and Embarrassment

I FINALLY got the opportunity to use a 40th birthday present (from last October!!) from a great friend of mine. She got me a deluxe manicure and pedicure. Saturday of Labor Day weekend was the first time I truly have had a large enough block of free time (since Oct 08!!) to go and enjoy some pampering, sans kids and hubby.


I upgraded to the french mani & pedi, and decided to throw in a brow wax.


Embarrassing Moment #1 -
I got my eye brows waxed by a cute, thin, young Asian lady. Upon finishing my eyebrows, she said, "You want your lip done too?" Well, my hair is fairly light, so I have never had the area above my upper lip waxed. So I said no. She looked at me and in a very matter-of-fact voice stated, "You need it done."
Ouch! Guess along with being 40 is the realization that I now need my 'mustache' waxed!


Embarrassing Moment #2 -
Saturday night, we went over to a friend's house to hang out around their fire pit on such a great evening. Soon, we were passing the box of mosquito wipes around... you know, the kind that come in a container similar to Clorox wipes or hand wipes. So I pull one out and accidentally pulled a second one almost the whole way out. I decided to shove it back down the little hole. At this point, I shoved a little hard and my beautifully manicured finger goes down past the 'teeth' of the container to hold it there in an uncomfortable lock. I felt like I had put my fingers in one of those Chinese 'finger cuffs' and was feeling pretty stupid. I tried to unobtrusively pull it out, but the painful grimace on my face said it all. So I had to confess my stupidity, and had a ruined french manicure and red hurting finger to show for it.


Of course, it didn't take much longer for at least half my nails to look just as bad. The process of washing your hands 50 times per day, cooking, cleaning, changing diapers, scrubbing toilets, doing laundry... just reminds me of why I haven't had my nails painted in over a year to begin with.


French Manicure?! Well, what's left of it.


The pedicure is still looking good. But Jeremiah thinks I now need to cut my toenails because they are too long. LOL!


My toenails have survived being painted.



Michael helping the boys roast marshmallows.


Chris and Payton



"Mini-Me" Elijah, who can't go anywhere without his laptop. He is so like his Mommy...

Sunday, August 30, 2009

Lila Rocks!


Our NILMDTS photographer and friend, Lila Armock, scored another winning photo shoot with the Budd Zoo (despite short attention spans and a short photo shoot window). The pictures were taken at Falls Park in downtown Greenville.

If you live in the Greenville, SC area, be sure to check out Lila's website and set up a photo shoot with her. You won't be disappointed!

Josiah - 2

Josiah

Isaiah - 4

Jeremiah - 6

Elijah - 8

Rebekah - 4 months









This picture captures the personalities of each of my kids!

What sweetness!






Saturday, August 1, 2009

Wonder

One of these days, I will finally finish my account of Rebekah's hospital stay. I have it all in a doc, just am not finding the time to get it moved over here and psot with pics. I really want to do this for future T-18 moms so they have something to validate there feelings and get a glimpse into what a t-18 world is like.




In the meantime, I had to post this song. It is incredible. How I love my little Rebekah and she is my "Wonder"...



"Wonder" by Natalie Merchant

Here are the lyrics:

Doctors have come
from distant cities
just to see me
stand over my bed
disbelieving what they're seeing

they say I must be one of the wonders
of god's own creation
and as far as they see they can offer
no explanation

newspapers ask
intimate questions
want confessions
they reach into my head
to steal the glory
of my story

they say I must be one of the wonders
of god's own creation
and as far as they see they can offer
no explanation

I believe
fate smiled and destiny
laughed as she came to my cradle
"know this child will be able"
laughed as my body she lifted
"know this child will be gifted
with love, with patience
and with faith
she'll make her way"

people see me
as a challenge
to your balance
I'm over your heads
how I confound you
and astound you
to know I must be one of the wonders
of god's own creation
and as far as you can see you can offer me no explanation

I believe
fate smiled and destiny
laughed as she came to my cradle
"know this child will be able"
laughed as she came to my mother
"know this child will not suffer"
laughed as my body she lifted
"know this child will be gifted
with love, with patience
and with faith
she'll make her way"




more about "Natalie Merchant - Wonder", posted with vodpod

Friday, June 26, 2009

Two Operations and a Breakdown: June 1-4

This is a summary of what happened right before and after the trach/g-tube operation...

6/1 Day 42 and Day 13 in the Hospital

6/1/09 4 pm - Rebekah's surgery is tomorrow (tentatively 11:30 am) instead of today.
To make a long story short, we have been struggling over the idea of having a g-tube put in at the same time. Most trach babies end up with g-tubes. :-( After discussing it with probably 4 different doctors, we've decided to do it and hope she'll only need it on rare occassions.
Please be praying for a successful surgery and recovery. Thanks!
The surgery was delayed because to do the g-tube, we needed an upper GI study which showed... everything was 'normal'. What did you expect? :-)


Rebekah getting a bath to beautify for her upcoming surgery.

video
I recorded Rebekah several times trying to capture her crying and making a cute little noises. I was warned that the hardest part about traching your baby is that you no longer can hear them cry. I never did get the little whimpering noises, but here is a nice cry. I'm looking forward to the day I can hear her again!

6/2 Day 43 and Day 14 in the Hospital

6/2/09 8 am - Rebekah had a rough night of true apnea episodes where she did a lot of periodic breathing. We think it is because of her upper GI test yesterday and the stuff they use to see the GI track has caused her severe diarrhea and bad reflux. But she is doing better now and waiting for her surgery. I am really praying this solves her apnea episodes. This is also the last morning I am going to hear her sweet cries for a long time. :-( On a positive note, she is up to 5lb 9oz!

6/2 8:40 am - We've been bumped to 1 or 1:30pm. Guess the doc wants to make sure he gets a lunch break. :-D

6/2 11 am - As I sit here comforting Rebekah in her hunger waiting for her surgery, it just makes me appreciate how blessed we are here in the US. There are countries where millions of people are starving and mothers have to listen to their babies cry in hunger day after day until their poor little bodies give out. Thank you, Jesus, for blessing our life and for providing us with everything we need. I also have a t-18 mommy friend in the UK who has a little 3 year old boy that needs heart surgery. Do you know in the UK (yes a modern country with all of the medical capabilities we have) they will NOT do surgery on a t-18 child? They just rather let them die. That is another reason I am proud and blessed to live in the USA. I find it totally absurd that a child has shown that he is fighting to live and they won’t consider ‘fixing’ something that can be fixed. One of the doctors here also told me how in Europe and Japan, you will not find a lot of special needs kids – for the same reason. Their lives are not valued or sacred.

6/2 5:05 pm - According to the surgeon, Rebekah's surgery went "very well". She is breathing on her own. However, she is having episodes of bradycardia (slow heart rate). One was pretty deep and long. Her doctor said for a baby <2 style="font-weight: bold;">6/2 5:52 pm
- Although the surgery went well, Rebekah's CO2 level is really high - she is not releasing CO2 efficiently when she exhales. They are trying to determine why but we only have a short time to resolve this before we have to consider ventilation. Needless to say, this is rather depressing and going down a path we didn't want to go on. So we need those prayer warriors to keep on praying. The next 48 hours are critical.

6/2 6:55 pm - Well, I've got bad news that is actually good news if they can figure out how to fix it. It turns out that the air is NOT passing through the trach! So Rebekah's drive to breathe is so strong that she is working to breath around the trach tubing. This most likely is the reason for the really high CO2 level, because she cannot breathe efficiently. They are working to figure out the problem and solution.

6/2 7:00 pm - The bad news is her Trach is blocked. The good news is her Trach is blocked and she is still breathing on her own and keeping her stats up. God just showed Psalms 20:7 to me in real time!!!! She is in His hands!!! Literally... It is NOT her day to go today and she WILL be sustained until they can figure out what went wrong. Isn't God so evident in this child's life? I hope everyone following this story realizes that they are seeing His miracles one after another and, if you have not submitted yourself to Jesus, you need to do it now. There is no better place to be than in the arms of my Lord and Savior!

6/2 8:16 pm - Rebekah is heading back to the OR for a second surgery to fix the trach.

6/2 9:46 pm - Rebekah came back to her room at about 9:20. The Trach had moved out of place, so the surgeon put it in the correct position and secured it with sutures. He said that would hold it. She is breathing on her own and stable. PTL!! Thank you for your many prayers. Good night to all.


Wheeling Rebekah to the first surgery. I cried as I left her there.


Recovering from surgery #1.

6/3 Day 44 and Day 15 in the Hospital

6/3 9:35 am - Rebekah is having some incidents of low oxygen levels and heart rate, but is self-correcting for the most part. We are just going to have to wait out the next 2 days and trust that this will improve as she completely recovers from 2 surgeries. I had to go home last night to relieve the babysitter. Michael truly felt he was witnessing a miracle as Rebekah breathed through two obstructions until her 2nd surgery.


Feeling a little more alert after two rounds of anesthesia are finally starting to wear off.

6/4 Day 45 and Day 16 in the Hospital


6/4 9:47 am - Not much to update other than Rebekah is stable and we are waiting for her '48 hour' period to end. When she goes into a deep sleep, she is still having some issues, but if they continue past tonight, we can consider putting her back on caffeine to see if it helps. Overall though, the trach is definitely making it easier for her to breathe. Care is a little overwhelming, but I know it will become easier over time. We've been using the g-tube to feed her. At some point today we will try a bottle.

Summary of the Day:
We tried giving Rebekah her first bottle today. We only did 1 ounce. She seemed to swallow well, but did have a lot more fluid to suck out of her trach after eating. It was undetermined if it was milk or just watery mucous. So we’ll stick with the g-tube today and go for a swallow test tomorrow to see if she is aspirating.

I had a meltdown today, in the hospital. Luckily my friend Renae Bradley (Her son Dawson is 3 and has T-18) was here to lend me a shoulder to cry on and great advice on how to deal with the hospital. Rebekah was having a lot of bradycardia events, and I felt like no one was watching over her or checking on her when her monitor would go off. Consequently, I am on pins and needles here at the hospital; feeling like I cannot even leave the room for a few minutes for fear that no one will be there for my poor baby. Also, trach and g-tube care is not simply common sense. She’s only had these things for a few days and I have received little training on them, yet I feel kind of abandoned and left to deal with her alone. So after talking to one of the managers, I feel a little better and she assured me that I should have enough confidence that if I even wanted to leave the unit and sleep at home at night, Rebekah would be taken care of. I don’t think I would ever want to do that, but I do hope my trust is restored enough that I COULD do that if I really wanted to.

Added note: The nurses at the Greenville Children's Hospital are wonderful and I am sure they would not willfully do anything to harm my child. But days and days of stress and no sleep make one very negative and I was at one of those points. I am posting this as it documents the feelings I was going through, but know that I do have full confidence in the PICU staff.

So back to her bradycardia… we started her back up on caffeine mid-afternoon. We’ll have to see if that helps, but the doctor isn’t too hopeful. He doesn’t think the caffeine will work on her. He said we could put her on a respirator, but that is going down a path we decided quite some time ago that we did not want to go down. I feel like we’re back to square one, and I have to be honest, I feel just a little abandoned by God right now. No, my faith won’t stop and I won’t become bitter and angry, because I always knew that Rebekah was being entrusted to us for a short time. But with all the miracles that have occurred along the way, it just seems like a cruel joke to be back at the point we started at. We would not have had a tracheostomy in the first place if the test results hadn’t come back as they did – that the majority of the problem was obstructive.

So when Michael got to the hospital, he sent me home and told me to enjoy the boys. I looked tired, I was emotional, and I wasn’t handing all this as well as I could. I think stress and continued lack of sleep is just eating at me. I simply cannot sleep when I’m in the hospital. I wake up all night long, just can’t help it. But I tried to enjoy the evening. We all talked to Grandma Kraieski on phone. During Isaiah’s conversation, Grandma wanted to know if he was enjoying his school break for the summer. He kind of wavered on the answer announcing that he had to go back in the fall ‘to get more experience’. LOL. I wonder what kind of ‘experience’ you learn as a 4 year old? Then the boys and I curled up on my bed and watched Night at the Museum. I’m looking forward to a day we can all go somewhere again as a family and do something as simple as go see a movie together. They’d love to see the sequel!


My friend Renae came to visit Rebekah. Her and Angela, my two trisomy 18 moms here in Greenville, were our most frequent visitors during our month stay at the hospital!


This is Dawson (Renae's son), who is 3 1/2 with trisomy 18. They have a website called www.trisomy18hope.org. We are going to revamp it to include Rebekah and hopefully other living t-18 kids.

Saturday, June 13, 2009

Bronchoscopy & Results

5/27 - DAY 37 and Day 8 in the Hospital

5/27 2:18 pm - Great, great day today. Rebekah has gone over 24 hours without a major incident! Woo hoo! I'll be at the hospital through the night and tomorrow. I'm bored if anyone wants to stop by. PICU room 5617.

5/27 11:18 pm - This is the first day in over 5 weeks that I have allowed myself the luxury of not staring at an apnea or sat (oxygen) monitor every waking minute of the day. In fact, except for feedings, I have only occassionally glanced at the monitor. Never take for granted your healthy 'normal' children. Thank God for every 'normal' behavior you are blessed with, cherish even crying, temper tantrums, and over zealous speech.


Beautiful little Rebekah


5/28 - DAY 38 and Day 9 in the Hospital

5/28 2:30 pm PTL - we got the results from the bronchoscopy and it is ALL upper 'floppy' airway issues. Everything below the vocal cords looked well formed and very clear - this is great because it means that she does not appear to be aspirating when she eats and it makes a trach an option for her (which is probably what we will end up doing). They are sure that a trach will solve her apnea issues, but they are not sure how it will affect feeding. She does have some anatomical variations that complicate the feedings/breathing too. Please pray for wisdom on what we need to do and that God will continue to bless Rebekah and, if we go the trach route, keep everything else working like it already is. The trach is what they would recommend for 'normal’ children with the same floppy airway issues. It can be reversed as she gets bigger if she grows out of the problem. Although it has complications associated with it, it is a much better long term solution then a constant high pressure airflow that could cause future lung problems. The only down side is that we probably won't be able to get it scheduled before Tue and the recovery time is at least a week. :-( Guess its more hospital food...

5/28 11 pm - Stay here long enough in the hospital and you get to ‘move on up.’ There are two coveted rooms on the PICU floor – corner suites, if you will. One resident just moved out, so we are moving on up! We are now in the PICU room 5616. We have an extra chair, a more comfy bed, and a toilet that cannot be seen from the door. Our last room was square with one whole glass wall facing the PICU hallway and desk. It was exactly like being in a fishbowl! We are still close to the nurse station and main desk, but have a much smaller viewing area into our room from the hallway. I am so happy to have a little more privacy!



Getting set up for the bronchoscopy. I had to step outside during the procedure, but curiosity got the better of me and I went back in to watch it on the screen. It was quite interesting (but heart breaking to hear Rebekah screaming her head off). As the scope penetrates the vocal folds, you no longer hear the crying, just the rush of "mad" air coming out.

video
For the medically geeky, here is a copy of the bronchoscopy video.

5/29 - DAY 39 and Day 10 in the Hospital


Can you believe it, I actually did not report an update this day! Or take a picture. I have NO idea what I was doing this day.

5/30 - DAY 40 and Day 11 in the Hospital

5/30 4 pm – Looks like we are on the Monday 'wait list' for the tracheostomy. We'll find out sometime Monday morning what time it will occur. We will be in the hospital probably 2 more weeks after the surgery (barring complications) because it needs time to heal, we need to reestablish her swallowing with the trach, and we need to learn how to care for it. Please be in prayer that this will not mess up her eating and that there will be no further complications and this will resolve all of the apnea issues. If all goes well, this will give us mobility again and help us to be a family once again doing things together and taking her places with us. The high flow air scenario just wasn't going to work long term or be portable for us. Our greatest risk right now is that the trach will increase her probability of aspirating and result in having to tube feed her. We are praying that God will allow her to continue eating by mouth, which she is so awesomely doing right now! Since we’ve been in the hospital, her average feeding has increased from 1.5 ounces to over 2 ounces per feed, and we’ve even had some 3 ounce feedings!

The conclusion from Rebekah’s sleep study is that she is experiencing all obstructive apnea. The doctor’s recommendation was to stop her caffeine as we move forward. However, it is not with 100% accuracy that we can say she does not have any central apnea. It could be that the obstructive apnea is so bad that it is masking central apnea, or that her caffeine actually is taking care of the central apnea. But while we are in the hospital, we are experimenting to see if she can come off of it. Rebekah has been off her caffeine for several days now. She has been having a few oxygen desaturation issues with bradycardia (low heart rate) yesterday and today, but it is hard to tell if that is a factor because of the caffeine working its way out of her system or that the high flow nasal cannula just isn’t 100% effective (which we already know) or some other unknown factor. I’m somewhat on pins and needles today just wondering what will happen as it completely works its way out of her system. But this is something we can easily start her back up on if we need to.

Rebekah is thought to have laryngotracheomalacia (floppy airways) but a second opinion said that her throat looked pretty good but was collapsing because of a blockage further up that was causing extreme negative pressure on her airway - most likely that blockage is her tongue. She has micrognathia (very small lower jaw) but a normal tongue, so the tongue falls back and blocks her airway. If she were older, there are a few different surgeries we could consider that would resolve the problem. However, for various reasons, they are not an option for a 1 month old. So this other doctor is also making a recommendation for a trach. On the positive side, this is a good sign that we could have the trach removed in the future and, if she grows normally (which is not expected in a t-18 child), she might even outgrow the source of the problem and not need any further surgery except to close up the trach hole.

During her swallow study, it was shown that because of Rebekah’s small lower jaw, large tongue, and some other minor anomalies, she has a higher risk factor for aspirating when she eats. When she swallows, what she swallows actually penetrates the vocal folds (this is not normal), but does not actually go down her trachea. We know from chest x-rays, the bronchoscopy, and the swallow study that she definitely is not aspirating when eating (but remains at risk). However, with the tracheostomy, the pressure in her trachea is going to be different and we may or may not create a problem with her current swallow pattern. After she recovers, we will need to do an additional swallow study and see what happens. We are praying that her body will correctly compensate and this will not be a risk. We are so in awe of what God has done so far for Rebekah – compared to what I read about t-18 children, it is amazing that she is feeding so well by mouth, and eating enough to not just maintain but grow at a healthy rate. It would be somewhat devastating to go from being able to completely feed her by mouth to getting a g-tube (a feeding tube surgically placed directly into the stomach) to feed her. But this is a risk worth taking when we consider current quality of life for her and for our family.

Out of all of the things that should be wrong with Rebekah, to have a trach possibly be the only thing she really needs right now is, well, a miracle! Time will only tell, but if the trach does not cause a feeding issue and completely solves the apnea issue, this will hopefully buy us much precious quality time with our sweet daughter that would not be otherwise possible. We are so looking forward to being together again as a family – and actually being able to take Rebekah places with us! We have been praying that this summer can be a summer in which we create some beautiful family moments.


Everyone making themselves at home in the PICU.

Mommy feeding Rebekah dinner.


Life must go on outside of the hospital! Michael took Elijah and his brothers to his cubscout graduation picnic. He was a 'Wolf' (2nd grade) and is now a 'Bear' (3rd grade).


Michael with Josiah and Isaiah at the picnic. (Susan was stuck in the hospital.)


5/31 - DAY 41 and Day 12 in the Hospital
Also a day I didn't report anything on facebook! The boys came to visit again and took turns holding Rebekah.
"Ewwww, Rebekah's diaper stinks!" (A friend noted that Rebekah looks like she is actually laughing at Isaiah.)

Friday, June 12, 2009

The Apnea Study

The 'books' will tell you that for the trisomy 18 babies that make it to birth, 90-95% of them will die before they are 1 year old. The primary causes of death are usually quoted as major heart defects or central apnea. Central apnea is where the brain is not telling the body to breath or the heart to beat while a person is asleep. Many of the doctors think Rebekah's issue is probably central apnea and there will not be an easy solution. We are hoping for a different story. This is what happened the day of and following the sleep study until we had an apnea diagnosis of central versus obstructive apnea.

5/22/09 – DAY 32 and Day 3 in the Hospital

5/22 4:12 pm - PTL! Today has been a great day! The current intervention continues to be extremely successful - we've gone from >300 'incidents' (with at least 10 full blown blue spells) in a 24 hour period to only 6-7 incidents with only 1 short blue spell. What a break! She had her first bottle after 36 hours of not eating and for the first time did not desat during the feeding. The challenge will be duplicating the current process at home since she is using a machine that isn't used in homecare (hi flow nasal canula) and her size is making cpap at home something that might not be doable. We have the sleep study tonight and more studies next Tue. We will be here into Wed unless they think up more studies.


Pretty in pink!


How do I eat with all this stuff on my head?


All ready for the sleep study.

5/23/09 – DAY 33 and Day 4 in the Hospital

5/23 9:40 am - I backed into the pizza delivery guy the other day who decided to street park behind our driveway just as I was backing out of it. Then I dropped my cell phone in the bathtub while giving the boys a bath. ~:-/ But at least I am getting some sleep finally!

5/23 9:50 pm - Update by Michael: We're ending another pretty good day. Our only "real" incident occurred during an experiment with a set up that would be easier to take home, so we're back to the 5 liter flow which seems to still be working well. I realized tonight (with Mark and Amy) that being here alone with Rebekah has helped Susan and me to focus on what she is doing. That focused attention has allowed us to see her obstruction patterns. The challenge is resolving the obstruction issue in a way we can take home. Tonight I am praying for the answer to that question.


The morning after the sleep study, we had to clean all the goop out of her hair. I think it actually took several days and baths to to get it all out!


Rebekah had to get a new IV line today.


My brother and sister-in-law stayed the weekend and brought their dog (and kids). Josiah loves the dog and apparantly the dog crate. He put himself in the crate and shut the door, then acted like a dog.

5/24/09 – DAY 34 and Day 5 in the Hospital

5/24 10:56 am - Update by Michael: Rebekah is eating exceptionally well today (60 cc's from a bottle twice) and she just weighed in at 5lbs 2 oz (3oz more than two days ago). She is back on a positive growth curve. PTL! She had some incidents last night, but they may have been caused by the nasal cannula falling out of her nose. Since it was retaped, we haven't had any problems. Susan and I will be switching places later today. In case your wondering, Rebekah was actually 5lbs. 4 oz., but we took off 2 oz. to account for what she just ate. For me to have the same percent increase in weight as 3 oz to her, I would have to put on 7 lbs.

5/24 7:20 pm - It's amazing what a few night of decent sleep can do for one's spirits! Well that and knowing that I have hundreds of prayer warriors out there and that I am a blessed child of God. :-) Ephesians 3:16 I pray that from his glorious, unlimited resources he will give you mighty inner strength through his Holy Spirit. Rebekah continues her great behavior and progress. We MAY be looking at a trach for a solution, but that answer will come after her Tue & Wed tests and meetings with the doctors. I'm just so happy that her problems are mostly physiological and a solution is in the near future!


Holding my baby girl...


Josiah helping out with the trash back at home. Gotta teach 'em early!

5/25/09 – DAY 35 and Day 6 in the Hospital
5/25 3:40pm - Dr. Gault (the sleep doctor) came in today just to see Rebekah! There are about 900 pages of a report to be reviewed but his preliminary report is... obstructive apnea! (not central which would be her brain function). I know we have to wait for the 'official' report, but this is AWESOME news! So another test will be added to the list and we will probably be here the whole week. But PTL for good news! Rebekah also had problems with desating this morning (her oxygen levels dropping), but it turns out that her nose was full of boogers. Once again - obstructive! Nose was cleaned out way back with a little tube thing and the humidity turned up on her high flow air. So far, no more episodes. And she is still eating great - about 2 ounces per feeding. WTG Rebekah!

Looking pretty for today's visitors!


Aunt Amy and Uncle Mark in the hospital room with Josiah.


Elijah, Isaiah, Josiah and cousin Nick.


Jeremiah and cousin Ben playing on my laptop in the hospital room. Thank goodness for wi-fi!
5/26/09 – DAY 36 and Day 7 in the Hospital

5/26 5:37 pm - The official word is definitely obstructive apnea! In fact, the doctor is pulling Rebekah off her caffeine. The most important test comes Thu - a bronchoscopy where a little camera will be inserted up her nose and down her wind pipe to below her vocal cords. We are so appreciative of all the support we've been receiving. We do still need a little more childcare help this week. Oh, and the doctor said that it is a significant finding that she does NOT have central apnea since she is a trisomy 18 child. Hip Hip Hooray! Your prayers are working and God is good!
Rebekah also had a swallow study today which showed some anomalies. In the swallow study, they mix barium in the formula, sit her up in a special chair, then take an x-ray movie of her swallowing. It's really quite fascinating! Anyway, her bottom jaw is small and her tongue too large for it. Her palate (roof of her mouth) is a little short, so when she swallows, she actually sometimes pushes the food up her nasal passage! This will probably mean she will be prone to sinus infections. She also swallows in a way that each swallow dips down to the vocal folds in the trachea, but doesn't necessarily penetrate it. But that means that she has a higher probability of aspirating and probably micro-aspirates. (Good thing she doesn't know this, because she's been doing a great job eating!) We were able to play around with some different nipples and find one that works best for making her swallows more 'normal'.

Sound asleep after the swallow test and a bath. Doesn't she look like a little rocker girl?