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Archive for May 2013

CF Clinic April 2013

Wednesday, May 22, 2013

I have lots of photos to post regarding our Cystic Fibrosis Walks in Wilmington, St. Louis and Waco.  But, while I upload all the pictures, I wanted to go ahead and post about Bennett's Cystic Fibrosis Clinic appointment last month.

Bennett sees his Cystic Fibrosis Team every three months.  His last appointment was in April.  Going to the CF Clinic four times a year has become fairly routine.  We typically leave Waco to arrive in Dallas after the early Dallas morning traffic.  We spend the morning at the Clinic meeting with members of the team and then will grab lunch on our way back home.  I usually drive in to town in just enough time to pick Oliver up from school.  I appreciate the predictability of this process.  We never ever take this predictability for granted.  One of these days, we will be thrown for a loop, admitted after clinic or something else.  But, for now, we are thankful that our CF Clinic visits feel a bit routine.
Dallas Children's Hospital's Cystic Fibrosis Clinic recently began asking all of its Cystic Fibrosis patients to wear masks while in the clinic.  This is very hard to do.  (I'll be honest, I hate it things blocking my airway so wearing a mask makes me want to go insane.  But I do it to help Bennett feel less alone.)  I was very proud of Bennett for wearing his mask for as long as he did.

Before each appointment, each CF patient is given "vitals."  Bennett is weighed and his height is taken.  They listen to his heart rate and take his blood pressure.   They also measure the oxygen in his blood with an oximeter (see his finger).  While this is routine, it can be scary.  Fortunately, Bennett has become more and more comfortable with the process.

What a champion - my little three year getting blood pressure and blood oxygen measured while wearing his mask and holding his toys.  Thankfully, all of these things are what keeps Bennett healthy. I didn't take any pictures of his actual exam with his pulmonologist but that went equally as well.  He has gotten more comfortable with the typical looking in his ears, nose and throat and listening to his lungs.  Bennett continues to do very well and show no real signs of lung disease.  We feel incredibly blessed.

Come on, baby, move.

Thursday, May 16, 2013

For most of the pregnancy, Baby Girl has been a fairly active baby in the womb (for which I have been very glad).  Getting to watch her dance in my belly, at times, has been a lot of fun.  I have many times tried to envisioned exactly what she is doing in there - little girl so busy going nowhere. :)  

Movement in the womb during this pregnancy is incredibly reassuring for me.  It was that very lack of movement in my last pregnancy that first indicated to me that something was wrong with Bennett.  When Bennett was born, I quickly learned that he was estimated to be less than 24 hours from death.  Had I not noticed his movements slowing, he might have been a stillborn.

So, even the slightest bit of slowing down of movement can quickly bring me back to a place of intense fear and helplessness.  That's exactly what happened yesterday morning.

A few days ago, I noticed Baby Girl wasn't moving as actively as usual.  I didn't say anything to anybody, except maybe a random comment to Brian here and there (which was more talking out loud to myself than anything).

I didn't even mention my fears to my doctor on Tuesday at my 28 Week OBGYN appointment.  I just kept trying to reassure myself inside that just because I felt she wasn't moving a much didn't necessarily mean something was wrong.

But Tuesday night, when I happened to wake up briefly at 3AM, I checked in on the baby.  She didn't really move much.  But, again, I reassured myself she was probably sleeping and not to worry.  

It wasn't until I got up yesterday morning to get the boys ready for school that my fears finally "went there." My mind tried to stay calm but inside I began to accept that maybe there was something really wrong - a cord issue, a blood clot, something else entirely.

I woke up, got the boys dressed and put Bennett on his Vest.  Then, I ate breakfast washing it down with a can of diet coke with the hope my sleepy baby might wake up.  "Come on, baby, move," I said under my breath, "show me you're ok."

I felt maybe feel the tiniest of movement but it was so soft that I wondered if maybe I'm "just making it up" or maybe "it's just gas."  I needed a few strong kicks but they didn't come.

I told Brian that I was worried and that I was going to try to go in to my OBGYN to get monitored.

I hate the feeling that I'm being dramatic or worrying needlessly.  But I also have a very clear moment in my own life when following my intuition was right on the mark and had I not followed it, Bennett would not be here.  So, I reminded myself that additional reassurance all is well is never wasted.

Telling Brian about my fears was very deliberate this time.  I specifically asked Brian to drop the kids off at school and meet me at the OBGYN clinic while I was going to be monitored.  This was an important step for me this time because last time, I never told Brian my fears.

The morning of Bennett's birth, Brian had no idea I had been afraid the baby had died in the womb. Brian knew nothing until I texted him from the hospital saying, "Baby has stopped moving in the womb.  They've decided to induce.  Please come to the hospital soon!!"

I vividly remember the loneliness I felt when Bennett was being monitored, as I began to realize that I might have completely lost the pregnancy.  Because I hadn't told anyone of my fears, no one was there with me when I learned something was wrong with Bennett.  I wanted it to be different this time.  I didn't want to be alone this time.  I needed Brian.


So, I went in yesterday morning to the OB's office.  I didn't call.  I just went in.

"I'm not feeling the baby move very much so I would like to be monitored," I explained to the lady at the front desk.  The front desk lady sweetly told me to take a seat and she'd take care of it.

A few minutes later, she came back and said, "well, your doctor isn't going to be in for another hour.  But, we can monitor you then."

That wasn't good enough.  I wouldn't be able to wait an hour.  I suggested that maybe I could go to the ER instead, if they didn't think think they could accommodate me.  The nurse explained the ER would probably send me back to their office.

I felt in a quandary.  I asked, "is there no way to go ahead and put me on the monitor machine?  If something is wrong with the baby, I would like to know now."
She responded, "yeah, but you feel the baby move."

I realized that I had apparently used a phrase that was too reassuring for the nurses.  In hindsight, I probably should have told them the baby had stopped moving.

I replied, "yeah I have felt the baby move, but only barely."
The nurse realized I was seriously worried and wasn't likely going anywhere.
So, she went to talk with some other nurses in the back to see what she could do.

The lady finally came out and explained that the doctor-on-call would monitor me.  I felt relieved.

While she went to get everything set up, my own OBGYN's nurse, named Sherell, a very sweet black woman whom I enjoy getting to talk to each time I have an appointment there came out to reassure me.

She very tenderly put her hand on my back and in a very motherly voice said, "it will be ok.  I'm sure baby is fine.  We'll give you some apple juice to get her waking up.  You don't need to worry."

It was just enough love and care to bring my tears to the surface.  I had held them back all morning but now they came flooding out.  The truth is I was terrified things were not ok.  And I hated not knowing one way or the other.

Within a few minutes, I was sitting in a comfy chair, monitors strapped to my belly, the sound of a heartbeat filling the room.  Brian came in shortly there after and we watched the monitor screen to see if the baby was ok.



I was instructed to push a button whenever I felt the baby move.  Although the baby was moving in the womb some (captured on the monitor), it was clear that for some time, I really wasn't feeling much movement.

The nurse came in and handed Brian and me the TV remote control, explaining if we wanted to watch TV while we waited, we could.  But we didn't.  All we wanted to do was hear the lullaby of our baby's heartbeat and enjoy the incredibly annoying but reassuring muffled sounds of movement inside the womb.

After 20 minutes, the doctor-on-call came in and said the baby is was doing beautifully and we had nothing to worry about.  She said, "you know, babies start slowing down their movement because they start getting bigger and run out of space" (the exact same thing my OBGYN told me two weeks before Bennett stopped moving in the womb due to his colon bursting in utero).  But even the doc on call stopped herself and said, "well, you're 29 weeks so it's pretty early for the baby to get too cramped...."

This left me still not understanding why the Baby's movements had slowed.  But, I reassured myself, she is likely fine for now.


Eventually, I was taken off the monitors and started to get ready to leave before the nurse returned to ask if I would stay so my own OBGYN could talk to me for a few minutes.  Apparently, about the time I was leaving was the very moment my own OBGYN was walking through the office doors.

After being moved to a new patient room, my OBGYN came in, her nurse rolling a cart behind her.  The OB announced she wanted to do an ultrasound to find out exactly why Baby may not be kicking/moving much.  Her suspicion was that the baby may have flipped in the womb.

The OBGYN took the ultrasound wand to right above my pelvic bone.  There wasn't anything there but ambiotic fluid.  "See?" she said, "the baby isn't there anymore.  Your baby girl has been head down for a while now but apparently she has found herself transverse.  Your baby girl isn't very comfortable but she's found a way to get herself up here, where she is now oblique."

I couldn't believe the baby had flipped completely and I had no idea.  The doctor went on, "no wonder you can't feel her.  She's squished and probably just doesn't have much room to move.  This makes a lot of sense of why her movements have felt differently.

I could see the baby on the black and white ultrasound monitor.  It was good to see her wiggling around.  I could tell the OBGYN was feeling relief.  So was I.

Apparently, the little stinker was doing just fine, she just decided to get into a new position and cause her mother to panic.

Thankfully, knowing the Baby's lack of movement is likely just because in a precarious position helped my nerves tremendously.  We finished up at the OBGYN's office.  As we were leaving, Brian said, "I know little girls are drama but I just didn't think it was going to start so soon!"  :)

I have had a really pleasant pregnancy but I'm anxious for the next 11 weeks to go fast.  I'm ready to get this baby out so I don't have to worry so much about the dangers inside the womb and of what I cannot see.  I am just incredibly thankful for a wonderful OBGYN staff who were incredibly encouraging yesterday and a husband who was very supportive.

Starting today I am going to begin charting my "kick counts" so I can get a better idea of what is "normal" and "not normal" for her.

It's hard not to allow Bennett's traumatic experience color my perspective this time around.  But I know the best way to cope is to just live one day, one moment at a time.

Today I feel good.  Hopefully I will tomorrow too.  But I'll wait until tomorrow to worry about that. :)

Meredith's Mom-To-Mom Fundraiser for Bennett

Saturday, May 11, 2013

I received this surprise message from my sweet friend Meredith from Missouri the other day that I wanted to share.  She wrote...

"This may seem like it's totally coming out of left field, but God has really laid you and your family on my heart recently. Gracie (who is Bennett's age) had whooping cough for several weeks and had to have breathing treatments and medications galore and it gave me a taste of what you go through every day..."


"So, I participated in a mom-to-mom sale a couple of weeks ago and I set up my booth for Bennett..."



"I hope you don't mind that I borrowed a picture and used some of the verbiage from your video to make a poster for one of the tables..."


"I was very pleased that the total contributions were $97 and it's all for your little guy!  My kids have been praying for Bennett and it touches my heart that they have come together because of your son. So thank you!"

How can I ever fully express what a gift this means to me - to have a friend use their own creative talents to raise money to cure my son?  It is overwhelmingly touching and I feel so loved!!

Thank you, Meredith!!  Love you friend!! :)

Great Strides Walk 2013 #1 - Bennett's Brigade, Wilmington, NC

Wednesday, May 8, 2013


Congratulations to Bennett's Brigade in Wilmington, NC who raised $250 for a cure for Cystic Fibrosis and came out on an early Saturday morning to Walk for Bennett!!

Here are pictures of the Bennett's Brigade team at the Wilmington, NC Walk...


Thank you to David, Leah, Lisa, Doug, Johnnie and Noah for coming out and supporting Bennett on an early Saturday morning!



I just love this video that Leah sent me of Bennett's Brigade at the Wilmington Walk.  When Bennett saw the video, Bennett wanted to know, "where was me??" :)


I loved getting to see this picture where it shows how many people were at the Wilmington, NC Walk!


I love the sweet sign Leah made (and Noah often held) of Bennett in his Superman shirt.  It is so touching that all of the other walkers at the Walk that day saw Bennett's little face and knew why this group was particularly invested in finding a cure.




















Leah with her dear Mom (Lisa) and Dad (Doug).  What great parents they are to do this for their daughter and for the tender heart their daughter has for a child in need of a cure!


David and Leah


Leah, Johnnie and Noah


THANK YOU BENNETT'S BRIGADE - WILMINGTON!! :)  LOVE YOU GUYS!!

Preparing for Baby

Friday, May 3, 2013

We are preparing for baby girl over here at the Gamel household.  I'm 27 weeks now and beginning to seriously prepare for a new baby.  It's both a wonderful and frightening thought!  I look forward to holding our baby girl.  But I don't know what I'm going to do with three children!  I suppose I'll figure it out when I get there! :)

Each week, Brian takes a picture of my growing belly...


This week, a little person tried to sneak in the photo shoot.


Speaking of this little person, Bennett has learned the song "Rock A Bye Baby" at school and *loves* to sing it.  He loves to sing anything but apparently this song has been on his "most favs" list for a while.


So, when he saw the cradle someone recently gave me to use with the baby, it made sense that he would want to push it while singing his favorite song.  This prompted me to pull out the one doll we have in our house (for when our little friends who are girls come over to play) and place the baby in the cradle.  I wrapped the baby up in one of Bennett's old baby blankets, found a stuffed animal and a baby bottle and let him play.


Bennett loves it.  He loves "helping" with the baby and singing to her.  It is pretty darn adorable to see.  Bennett is going to be a fabulous big brother.  I think he is most curious about babies out of either boy, although both boys are quite interested in understanding how girls work (why they like pink and ruffles and things of that sort).


Bennett is incredibly social and really loves making babies laugh.  He loves to touch their heads and feet.  So, I look forward to seeing how he and his little sister will get along.

I have no doubt that our baby girl (whom we still have not named) will be well cared for by big brother Bennett and well protected by big brother Oliver.  This little girl is a lucky one to have such great big brothers.  And they are going to be so lucky to have a baby sister to love on and play with.

Of course, I'm the one who feels most fortunate as I get to be their mom...to watch them grow and develop into the people they are meant to be.  It's a pretty huge responsibility but this journey is worth every minute!  And it's sweet moments like these that remind me of this.

New Cystic Fibrosis Iphone/Ipad Game

Thursday, May 2, 2013

I recently learned about a new free iPhone/iPad Cystic Fibrosis game for older children, teens and adults.   It's called "Muck Busters" and, I'll be honest, is pretty addictive. :)

 

The creators describe the game like this, "Users navigate a colorful world battling stubborn enemies including bacteria, white blood cells, and mucus, and overcome obstacles, like blocked airways, with help from fun characters representing Pulmozyme, bronchodilators, hydrators, and antibiotics. Best of all, there is a component that allows users to create a profile which offers tools to help users keep track of their CF treatments."

Although it might be a little bit difficult for Bennett and Oliver right now (since they are 3 and 5), it's a fun little game and may make doing treatments go faster for those children hold enough to enjoy more complicated electronic games.

The part I found interesting was the little game was hard work to win...much the hard work it takes to overcome the negative effects of Cystic Fibrosis.  For a CF mom like me, it does feel a bit therapeutic to see that mucus go away.  Wish real life was that easy!! :)

This game is put out by Genetech, the makers of Pulmozyme.
Here's how to get it for free: https://itunes.apple.com/us/app/muck-busters!/id589643366



So, tell me, what do you and your kids think about it?