NICU Reunion 10/10/10

Today was the NICU reunion.  We debated over and over about whether to go or not, considering Clark has surgery in 10 days and has been in quarantine for awhile now to stay well.  We eventually decided not to go & I even sent out emails telling our NICU family that we wouldn't be there, regretfully.  Then I had a change of heart.  I had a feeling that it would be ok if we went (and brought a gallon of Purell and a tank of Lysol, of course).  I knew I would regret it if we didn't go.

I am so glad we decided to.  We saw people that we haven't seen in months and Clark got to meet some of the other babies.  I'll tell the story in the pictures I took..since there are about a million....

 

LaRhesa & Kaidyn

I love how Clark & Kaidyn are doing the same pose!

 

The wonder team from the night Clark's lung collapsed.

Neonatal Nurse Practitioners,

Amy & Melissa

 

Clark's doctor, 

Dr Cheryl Cipriani, baby whisperer &

certainly the most stylish doctor I've ever met.

 

Nurse Mela, ironically she was never Clark's nurse.

But, we were on the same volleyball team in 7th grade...haha.

 

Clark and the beautiful baby Cadence.

 

Clark & his bff, Mary

He gave her lots of good snuggles today.

 

Hi Deborah!!

 

Deborah was always there to lift our spirits on the tough days.

 

Clark & Maya's 1st meeting...

yes, he is trying to hold her hand

 

It didn't go over well..

sorry MayaBug, we <3 you!

 

Dr Govande, he was Clark's doctor from

time-to-time when Dr Cipriani was out.

 

Nurse Dynisha, giver of Clark's 1st tub bath &

our transporting nurse to the CCN.

 

Nurse Isolde, the one we gave many gray hairs

with the big "bath crash".

 

Dr Little, the surgeon who operated on Clark's hernias.

Apparently those were the stuff of legend and are now a part

of Dr Little's teaching curriculum because of their

gigantic-ness.

One sleepy little boy, post reunion.

We missed a lot of people that we hoped to see today.  But I know they had to leave someone in the NICU to hold down the fort.  We hope to catch them next time we go up there for a visit.

Let's see how well my memory is working..

We've been very, very busy lately.  So I do apologize for not blogging sooner.  Most recently Clark has had his 6 month NICU follow-up appointment & a pediatric visit.

The NICU follow-up went well.  He's 2 months advanced cognitively, 1 month advanced with fine motor skills and behind in gross motor, expressive & receptive communication.  The gross motor can be explained by his limitations due to his hip issues.  He's not able to start therapy yet because of the ongoing process of fixing the hip.  The low score on receptive communication is due to his vision problems.  And I'm not really sure about the expressive communication issue.  That one could just be his personality.

Speaking of vision, his eye appointment is in December.  His eyes will be dilated and refracted and then he'll likely be fitted with glasses.  We fully expect a "legally blind" diagnosis, considering the underdevelopment of his optic nerve .  I'm just putting that out there so that if it is the case, none of you will be shocked.  If you know us personally, you may have noticed that Clark does not make eye contact and rarely interacts visually.  If you've wondered about that, it's due to his underdeveloped optic nerve because of his missing septum pellucidum.

The pediatric appointment did not go so well.  Firstly, Clark was denied by his insurance for his RSV vaccine.  For those of you who don't know what RSV is, it is basically like a common cold in adults but in infants and preemies, in particular, it is deadly...extremely serious business.  I am currently appealing the denial and I'm hopeful, but not holding my breath. This is a $1,000/month vaccine, folks.  Every time I go out and interact with people I come home and decontaminate with antimicrobial soap..from head to toe.  Yes, that green stuff from the hospital.  Somehow, I'm sure that I'm shortening my lifespan by slathering that stuff on, but if it keeps the germies away, then GREAT.  Clark has been in quarantine for over a month now.

The bad part is that Jeramy works for the airline.  He comes in contact with people and luggage that has been everywhere in the world, from the Middle East to Russia, Central America and Africa, even.  There is literally no telling what kinds of germs he's bringing into our house.  Clark's pediatrician said that Jeramy's job is not conducive to Clark's health.  That's not bad news at all. Ugh. 

He also had to have labs drawn because he is anemic and his doctor wanted to check his iron levels and his cortisol levels before clearing him for surgery.  They did a finger prick and filled 2 vials with his blood.  Yes, it was 3 minutes of pure screaming torture.  Poor baby. :(  I'm waiting on pins and needles to hear from her about those results.

The good news is that Clark is growing!  He's ON THE CHART height-wise!!! The 5th percentile never felt so good.  He's making his own tiny curve weight-wise, but he is starting to eat more baby food and cereal and yogurt so hopefully he can pack on some more ounces.  Send good growing vibes Clark's way, he's currently 13 lbs 1.25oz & 8.5 months old.  Yes...he looks like a 2-3 month old.

Speaking of that sweet little boy, here's a recent pic:

 

I know all of you are and have been praying for Clark and we can't tell you how much we appreciate that.  I have all the confidence in the world in our team at Scottish Rite and I am praying for them to do everything that Clark needs to get his hip fixed and stay healthy in the process.  His doctor/surgeon's name is Dr Birch if you'd like to pray for him, specifically.  Clark's surgery is scheduled for October 20.  Bearing all complications, that will be the big day.  Please also pray for Jeramy & I, especially me...that we can hold it together and be strong for Clark.

Also, keep our friends, the Gallaways, in your prayers.  Adjusting back to "normal" life after what they have been through is not easy.  They need all the prayers and good thoughts you can send their way.

I'm sure there's something I skipped over in this update, and I do apologize.  I feel like I've been crazy-busy lately and if I didn't have everything programmed into the calendar on my phone, I'd never know what I was supposed to be doing!  Well, thank you for caring about Clark enough to come visit and read.  Until next time...

Remembering the sweet, beautiful baby Chloe.

Many of you may have heard me mention baby Chloe in past blog posts or on Facebook.  She was one of our dearest NICU friends.  Chloe was born on January 11, 2010, just 6 days before Clark.  Her mother, Dawn, and I were next door neighbors in the antepartum unit.  We would have met before the babies were born, as she tried to come visit me, but I missed out on that meeting because I was taking my bed rest quite literally and napping.  We ended up meeting each other when the babies were just over a week old at the NICU support group.  I was amazed by her strength and poise, even then.  Kindness and gentleness was in every word she spoke, and she was recovering from a very complicated pregnancy with a tiny 1 lb baby in the NICU.  I admired her.

As the weeks passed by, Chloe & Clark faced many, many struggles.  Clark battled pseudomonas and Chloe had multiple surgeries for very serious health issues. After Clark came down with pseudomonas, Jeramy and I moved into the Ronald McDonald house.  I was worried about being away from home, having only one car (which Jeramy had to use to get to work), having such a sick baby and being alone.  Imagine my relief when I realized that I wasn't alone, Dawn was at the RMH too!  (In fact, another support group mom, Kristy, was there, and LaRhesa who also had a preemie in the NICU.)  I definitely was not alone.  I'll never forget the time Dawn and I sat up late into the night talking & getting to know each other.  She was a Christian, like me, who was also relying completely on God to get her through all of this.  There is nothing like that bond people share in Christ.

Through the ups and downs (and Chloe had more than her share of downs) of the NICU, Dawn and her husband David remained steadfast.  I know this wasn't easy with two other children at home, and on top of it all Dawn was still running her in-home daycare, but she pulled it off and she did it with a grace like I can't describe.  And here I was, feeling like a barely functioning drone.  From the moment I met her, Dawn has inspired me and from what I can tell, everyone else who meets her feels the same way.

Close to the end of Clark's NICU stay, he was moved to the CCN, the continuing care nursery.  I was (1) overjoyed & (2) terrified.  We were down there all by ourselves...and as good of a place as this was to be, I wanted our friends down here too!  Imagine my joy when a day or two later baby Kierson moved in, closely followed by our dear, sweet Chloe!  Chloe was still tiny (around 3 lbs) but so beautiful and just as cute as could be.  I can't tell you how happy I was that Dawn and Chloe were so close.  I knew when I went home at night that Clark wasn't alone, Chloe was with him...only about 8 feet away.

The time for Clark to go home came after 75 long days.  In all honesty, I was so scared to bring this tiny little guy home, away from all the doctors and nurses who had proven they were capable of saving his life, and away from our dear NICU friends that we had laughed with, cried with and leaned on for so long.  But I knew and prayed that they would soon follow and bring their precious babies home, too.

Sadly, Chloe never got to come home.  I won't go into the details because it truly is heartbreaking and I think the point of Chloe's life was to encourage people and lift them closer to God.  In the summer, Chloe was transferred from the NICU to the PICU (pediatric ICU).  Her parents were told it was likely she'd be there until 18 months-2 years.  This just broke my heart.  I wanted & prayed for this sweet, precious baby to come home!

Chloe passed away peacefully with her parents by her side on September 21.  Yesterday Jeramy and I attended the celebration of her life.  It was the most beautiful memorial service I have ever attended.  It was perfect in that it truly reflected the beauty that was Chloe Gallaway.  The service began with voices blending in song, describing God's amazing grace.  There were powerful stories from NICU & other hospital staff and friends about the impact her life made on them.  Her father played the most moving classical acoustic guitar accompaniment to a slide show of Chloe's life.  The service was filled with beautiful music, praises to God and hope of heaven.  At the end, Dawn took the mic and sang with a most beautiful voice a song about faith and God's triumph over death.  The congregation stood, hands raised high.  This family's faith was a testament to each and every one of us. 

At the internment there was a white dove release.  I had heard of this before, but never had taken part in one.  There was one dove that represented Chloe's spirit.  This dove was carried around the circle of all in attendance and we were able to touch it.  Then Dawn and David took Chloe's dove and held it for a moment, then gently released it to fly high over us.  After Chloe's dove flew, 3 other white doves were released, symbolizing the Father, Son & Holy Spirit.  Together, these doves flew into the bright blue sky until we could no longer see them.  They were flying home.

Our family is heartbroken about Chloe's passing.  It's just not fair and we hurt for her family.  But the comfort we have is that she is with God, he's holding her in his arms and she is whole again.  Chloe's impact on my life is such that I will work that much harder to make sure that I will see her again someday.  In fact, I pray that her life will have that same effect on everyone that knew her.

This post is dedicated to the inspiring life of

Chloe Elizabeth Gallaway

January 11, 2010 - September 21, 2010

Small Roadblock

Ok so you know how I told you that Clark was scheduled for surgery on September 29th?  Apparently bad sinus infections can postpone surgeries. 

Two weeks ago we saw Clark's pediatrician.  She said he had a "slight cold" and if it got any worse to come back and see her.  It got worse.  I tried to schedule an appointment last week but because of unwillingness on the part of the appointment clerk (and her supervisors), because of a small, manageable, insurance issue (I secured the referral required for the appointment weeks ago),  Clark was unable to see a doctor.  I thought it was illegal to refuse medical care, apparently someone (read: the appointment clerks at S&W Killeen pediatric clinic) is unaware of that.  Yep, I just called them out.  As much as they've jerked us around they're lucky that's all I'm doing...for now.

Fast forward to today...  This "cold" isn't getting better and Clark feels horrible.  I called the Temple S&W Pedi clinic last night to try and get an appointment.  --They were amazingly nice, by the way--  Killeen clinic could learn a few things from them.  She informed me that they never refuse a patient.  Unfortunately they were booked last night but the clerk gave me 3 options.  (1) I could call back throughout the night to see if they had any cancellations. (2) She would schedule me an appointment with a pediatrician for today.  (3) Or there was a walk-in clinic that opens at 7 that we could come to and see a doctor right away.

I was torn, in one breath I want to transfer care to a clinic with courteous staff.  But in another, I LOVE our pedi at the Killeen clinic.  This woman is pretty amazing, our first appointment with her she walks in with a hand full of hand-written notes about Clark's medical history.  Also, she called me on a SUNDAY to let me know some information regarding some things Clark has coming up in the future.  Who does that?  Love her...loathe the office staff.  So I'm torn.  For now I'm sitting on it.

We opted for option 3.  It was a good choice, they got us in within 30 minutes.  The doctor impressed me (I was worried about that).  She gave Clark a very thorough exam and informed us that it was likely a sinus infection and he'd need antibiotics for the next 2 weeks.  Uh oh..I just remembered we have surgery in 2 weeks.

As we're heading back to Killeen, I call nurse Emily (yes we have her direct number! TSRH is amazing) at Scottish Rite to let her know that Clark is sick.  She told me that this would push the surgery back but that it's ok, she would talk to the anesthesiologist, find out more and call me back.   I got a call-back within a couple hours.  The anesthesiologist said because of Clark's history, etc that we have to wait no fewer than 4 weeks.  I feel good about this.  Her reasoning is sound and pretty much echos how I feel.  (1) He's very small (2) He's a lung baby, he and his airway need time to heal from the infection before surgery. (3) He's got to go into surgery at 100% to lessen the chances of him getting stuck on the ventilator.

This surgery will require intubation and for him to be on the ventilator.  Ideally, as we learned with his hernia surgery, he'll come off of the ventilator immediately after surgery.  What's a surefire way to scare the mother of a preemie-previously intubated-small for age-lung baby?  The idea of her baby staying on the ventilator any longer than absolutely possible.  Emily will call us on Monday to check on Clark's status and try to reschedule the surgery.

Of course, rescheduling adds a whole new layer to everything because I've already booked a hotel, Clark has 2 other appointments during the tentative week that we're rescheduling, etc etc.  It's always something, but I'm here, Clark's here and I can handle it.

This is already an insanely long blog post but I wanted to mention that today I found the courage to go back into Clark's NICU blog and read it.  Suffice it to say, I was humbled and have a renewed outlook on our current situation.  The hip stuff is hard, it isn't fun.. but it sure beats pseudomonas, a swollen baby on the brink of death and 100 sleepless nights.

We love this little boy so much and we appreciate each and every one of you who take the time to read this blog and send up prayers on his behalf.  We are thankful to God every day that he sent us Clark and has entrusted us to care for him.  Please pray for Jeramy & I, too, that we can do our very best every day for Clark.

Be brave. Even if you're not, pretend to be.No one can tell the difference.

For I am the Lord, your God, who takes hold of your right hand and says to you,

Do not fear; I will help you.

Isaiah 41:13

On my computer I keep two windows open at all times.  On the left I have Firefox with at least 3 tabs: Gmail, Facebook & BabyCenter.  On the right side I have an electronic sticky note with Bible verses, song lyrics & quotes on life, including the two above.  One is good advice, and the other is God reassuring me that, no matter what, everything will be ok because He's with me.

Don't expect life to be fair.

Another quote on the sticky note.  This past week we visited Scottish Rite.  It was a very brief appointment with the doctor checking Clark's traction and removing his right leg from the traction and leaving the left suspended.  I asked a ton of questions, after all, surgery is only 3 weeks away.  Are the nurses on the unit nice, attentive & understanding? NICU moms...you understand this question. A nurse can make or break your day/week/month.  Will they give him the pain relief he needs? We've been through surgery before and the Mommy-it-HURTS!!! cry is the most heart breaking sound.  What percentage of kids need the more invasive surgery that he'll have to be older to have? 1%  Ok now I'm really scared because we've been in the 1% several times before.  

Have I told you how much I love Clark's nurse & doctor at Scottish Rite?  They kindly & patiently answered my million-and-one questions.  I'm sure I'll have a ton more next time I see them, but for now, I feel a little more prepared for surgery day.  September 29.  Based on our previous experiences, Clark likes odd numbered days, so I'm hoping that means something.

When facing a difficult task, act as though it is impossible to fail.

Thank you all for your concern and prayers for Clark.  They are what have gotten us this far, and what will continue to get us through.

Traction & all

Traction isn't fun.  The wait for surgery day is even worse.  That will be September 29th.  I'm so nervous about him going under general.  I know it's probably not a huge deal, but it is to me, the over-protective mommy. 

He's been in traction a week today.  So far, he's already fallen off the couch (in traction).  My fault, because I left his side for (literally) 10 seconds.  I feel horrible.  But he was ok.  It's not like it wasn't secured, I still have no idea how he did it.

We go back to Scottish Rite tomorrow for a check up and to remove his right leg from traction so his left hip can get the full benefit.  I hope this works.  We are trying so hard.

Blog readers (if there are any of you left), I am so sorry for the negativity.  Things have been hard to take lately.  It's been over a year now since "normal" life and I guess it just starts to wear a person thin.  Please pray for Clark and our little family.  And please pray for all of our little baby friends & their families who are still either in the hospital or struggling with various medical issues at home.  We know a lot of them.  If you have been blessed with a healthy child, please know that you are beyond lucky.

In other news, Clark is in good spirits, if a bit stuffy lately.  I'm praying this doesn't turn into something serious (like pneumonia) please pray with me that it goes away quickly.  His doctor said last week that it was a slight cold and should go away soon, but it hasn't.  And to top it all off, due to some insurance issues, we can't get in to see the doctor for an undetermined amount of time, as in the clinic refuses to schedule him an appointment despite my best (& successful) efforts of securing a referral.  This is SO scary to a parent of a baby who has had the amount of illness Clark has in his short little life.  Again, prayers are greatly needed and always appreciated.

Here's a recent picture of Clark & Kade.

Post from the road

I'm making this post from the road on our way to Dallas & Texas Scottish Rite Children's Hospital. We're all a little on edge today, anxious about beginning traction. I have my doubts that Clark will easily adjust to his new situation. I'm more nervous about today because it means, in 4 short weeks, Clark will be put under anesthesia for possible surgery & casting. He's been successful with one surgery already but I hate for him to have to experience more of that pain. I'm not excited in the least. I'm scared and it's not hard for me to admit that. Do I want his hip in place? Absolutely. Do I want to miss out on normal babyhood for the next 4 months? Absolutely not.

This treatment is going to be hard on all of us, so your prayers are needed & greatly appreciated. Especially for Clark, as he's just a tiny baby who has no idea why any of this is happening to him.