Thursday, February 10, 2011

"She's My Hero"

This is an essay my mom wrote and posted on her blog today, It's All Relative. You should check out her blog if you haven't already! What she wrote about me is so touching and I am so grateful to have a mother like her. I'm also glad I have made her proud of me.


Here we are in April of 2010

She's My Hero

This is the story of a little girl who came into my life many years ago. From the day she was born, she always had delicate features. When I would hug her to myself, I would always marvel at how fragile her bone structure felt in my arms and I would usually say as I hugged, "you are so little."

One Christmas when she was about six years old, we saw the movie, "The Little One", which is the story of a tiny little donkey who was given an important task - he was to carry Mary to Bethlehem. That was the day I began calling my daughter Little One. I called her that a lot through childhood and even through her college years. But I stopped when she married. I guess I thought she had outgrown the name. Even though she still has those delicate features and fine bone structure, today she is a poised young woman and the childhood nickname sounds a little out of place so I only call her that in times of extreme stress.

My Little One became a mother for the first time in 2003. For six years she thoroughly enjoyed mothering that little boy. I watched her grow as she seriously embraced this new role. There were many fun times during those six years as well as several trying life episodes.

After several months of trying to enlarge her family, she not only was blessed with pregnancy, she found out there would be two babies this time. A few months later, she learned that these two new babies were both boys. How could she be more blessed? She was going to be the mother of three boys. She would be the queen of an all-male household.

I watched that tummy grow and grow and grow, and worried that it could not possibly grow any larger

Then the surprise. Labor pains were coming sooner than they should have. Water broke. The rush to the hospital and the emergency C-section.

Then the uncertainty. One baby was small but just fine. One baby was small and had a problem. He was rushed to another hospital for surgery. Daddy went with this baby while Mommy and brother remained.

Then the heartbreak. The diagnosis for Brett was cystic fibrosis. But my Little One has a quiet strength that rises up when called upon. She has a fierce love and determination to give everything within her to her own little ones.

Its been almost two years now since that day, and I'm even more amazed with my Little One than ever before. She has been with Brett through more surgeries. Each surgery holding that unspoken fear that he might not survive. She has nursed him through multiple infections that have weakened his little lungs. She has made an untold number of trips to the CF clinic. In 24 months there have been 12 hospitalizations. When he is home, the medicine administration and breathing treatments take up several hours of her day. All the while, there is another baby to take care of and a 6-year-old that still needs mother's guidance and caring.

She runs a small enterprise..and its a lot more than just cooking the meals and washing the clothes. She is a dedicated planner, organizer, decision maker, psychologist, teacher, nurse, life coach, life partner, comforter, chauffer, cheerleader, and confidant. Doing all of this and more while she caters to the schedules, preferences, and needs of the people she loves. And she even manages a few minutes to call her mother once in a while.

Yes, at the end of the day, she sees the results of her efforts. She sees it reflected in the eyes of her husband and children. She sees it in the happy smiles on the faces of her children. She hears it in the joyful ring of their laughter. She feels it with each set of arms that hug her tightly each night.

Now this young woman not only handles it all, she handles it all with grace and dignity. I watch her. I watch her juggle all of this and listen to her hum while she works. I see the tiredness in her face, then I marvel at how she can overcome that fatigue and give those boys a sweet smile while patiently providing them whatever it is they need at the moment. She has plenty of love to go around.

I watch my Little One these days. I watch her prepare different foods based on each boy's desires and needs. I watch her find the way to play with each boy at their own level. This means playing sports with one, trucks with another, and baby games with another. I watch her dispense the medications. I watch her give the baths. And I watch her change diapers and change soiled outfits all day long.
All of this happen while she spends hours and energy taking care of a CF baby. I see the hurt on her face that she can't cure the disorder for him. I see the worry on her face that each hospitalization and each new health challenge brings. I ask her how she manages the fears and hurts. She simply replies that she is just doing everything she can to make his days as healthy as possible. She's one absolutely amazing woman. She's my Little One. She's my hero.

Wednesday, February 2, 2011

Twins are 22 Months!


 Enjoying one of their favorite activities - snacking!
On Christmas Day, Brett stood up without any assistance whatsoever for the first time. He was so proud of himself, and so were we! On New Year's Day he actually took a couple of steps. He can climb the stairs but he can't yet get down. He can also push a walker toy.

They are really beginning to progress developmentally. They both use signs to convey their desires, use signs for various objects around the house, and have some adjectives as well. Both boys are also putting signs together to express themselves more clearly, such as "help, please" or "more water please".



We have taught them baby signs for many words they need to communicate but can't yet say, such as "more", "help", "please", "food", "drink", "hot", "dirty", "gentle", and "outside."








Both boys have words such as "hi", "bye", "dada", "mama", "hot", "cold", "yum", "shoes", "down", "whoa", and "wow." Whenever any sports program is on TV - football, hockey, monster trucks, and even golf, they both start yelling "GO!GO!" But the word both of them say the best is "NO!" And they say it to each other all day long sometimes!



They get along all right half the time, and the other half they seem to be fighting over the same toy, etc. Gantt uses his strength to take things from Brett or hit Brett or put things where Brett can't get them. I guess it's normal, but we are trying to curb that behavior, of course. Sometimes they will play side by side or just talk to each other, and those times are wonderful!

One thing they love doing together is rocking in the chair. It's fun to watch them do that.

Monday, January 31, 2011

*Breathe*


This is a photo of Brett when we were in the waiting room at UNC for clinic last week. He was seen by his pulmonologist, Dr. S, and got a good health report! The main thing is that we are finished with IV antibiotics!! Since December 17, either we've been IN the hospital, or on home antibiotics.We are so happy that not only does Brett not need them anymore, but we are also so tired of having to administer them every 6 hours. That's round-the-clock, even at 3 and 3:30AM.

Weight: The same. About 21 pounds and 7 oz, or 9.55  kilos. The great thing is that he was able to maintain his weight throughout the last couple months of illness! The not-so-good thing is that since he hasn't gained any, he is still sort of on the brink of a nutritional "crisis." Do you remember way back when I blogged about trying new formula? That didn't actually end up happening after we found out the extraordinary cost of the formula. Even with 2 free cases a month, it was still going to run us $800-1000 a month. We wanted to try every other option we had first. At last week's appointment, we discussed at length the different options we might have - with the doctor, social worker, nutritionist, and special infant care coordinator all in the room. 

I got some names of foundations and agencies that help people that have children with extraordinary medical needs. But the best thing was that since we switched insurance on January 1, the new insurance plan will PAY FOR THE FORMULA!!! Also, our home health company provides it, so they will bring it to our doorstep every month without me having to remember to get online and re-order, the way I've been doing. Also, it comes in pre-mixed bottles! I've been mixing formula for almost 2 years now! By the way, though, I will be finding somewhere in North Wake that will take #5 bottles for recycling - we will be using over 200 bottles a month!We are so excited to be able to try this formula and needless to say, we have high hopes for this stuff! 

Venous Access: PICC line was removed in clinic on Jan 18. Brett has no IV access now.
IV Meds: IgG (immunologlobulin infusion once a month)

Deep Pharyngeal Swab: Culture on Jan 18 -No information yet

Next Appointments: 
February 11 - IVIG infusion
February 18 - clinic (pulmonology & gastroenterology)
March 1 - immunology

Friday, January 28, 2011

It's All Relative

This weekend I just wanted to highlight the fact that my mom has recently started a blog of her own. The name of it is "It's All Relative," and she writes about the various happenings and hobbies in her life, reflects on ideas, does book reviews, and shares about her children and grandchildren, of course! Click here for the link. This photo of my boys was in her last post. You should totally check it out!

God is good. Brothers are special.

Tuesday, January 25, 2011

2010 Christmas Day

We truly enjoyed our Christmas, especially since we narrowly escaped having to spend it at North Carolina Children's Hospital. We were SO grateful to be discharged, even if it meant that we'd be back in just a couple of weeks when the treatment didn't clear the infection in Brett's port. We didn't take very many photos on Christmas Day, and I'm not sure why, except maybe we were just too busy enjoying being together that we just didn't.  Here are several good ones:

Santa Claus came!

Full stockings

Gantt and Brett got tricycles from Pop and GG


Mark kissing Brett - sharin' the love


Playing together with their little workbenches.
This is a rare shot, as they hardly EVER play together without fighting. I hope it's just their age.

Mmmmmmm...bacon

Also got a Radio Flyer wagon


Mark got a ton of Transformers, which is what he's "into" right now!

Friday, January 21, 2011

Thursday, January 20, 2011

2010 Christmas Decorating


Yes, I do realize that it's January 21st. But with all the 16 days total in the hospital before and after Christmas, I just didn't get anything posted. Now that all the health/hospital business has died down a little, I'm going to post a little about our Christmas for the next few days.


We got our tree the day after Thanksgiving and got an early start on decorating for Christmas. Here are some photos of our fun time decorating.


This is Mark pretending like he's falling off the ladder. LOL


Gantt had to get in on the action, too


Mark has been putting the angel on the top of the tree for several years now.

This year he didn't even need Daddy to hold him -- only to "spot" him

 

And Brett just enjoyed tasting the lights

Wednesday, January 19, 2011

Wordless Wednesday - Ladies Man


If you can't read it, the shirt says "Chicks love me." From the Peeps store in Washington DC


Monday, January 17, 2011

The Day We Met

Today is the 15th anniversary of the day we met! We met in 1996 at Chick-fil-A at Beechwood Shopping Center in Athens, Georgia while we were  both attending college at the University of Georgia. In the photo we are standing in front of that store.


I was a manager there  (I had already worked there 5 years!) and Rob had just been hired on and it was his first day. He had worked at Chick-fil-A before when he was in high school, and he was coming back to it in hopes of owning a Chick-fil-A business for his career. We got engaged that Thanksgiving and married the next September.

And the rest is history!

Wednesday, January 12, 2011

Hospitalization #12 - Day 8

Brett made it home today - got discharged about 4:00pm. Met Dad and brothers at Chili's for dinner and now home and trying to get settled.

We'll be giving IV antibiotics every 6 hours for 2 weeks.

Tuesday, January 11, 2011

Hospitalization #12 - Day 7

Hooray! Brett got a PICC line placed today that is big enough for home use! That coupled with several consecutive days of negative blood cultures means that he will most likely be able to come home this week!!


Right now we are hoping for Thursday, the day after tomorrow.There are always certain variables that could change things, of course, and for this visit, one of those variables happens to actually be the weather! We've had ice this week, and that shuts down almost everything around here since it's so dangerous to drive on ice. Hopefully the weather will cooperate for the rest of the week and home health will be able to deliver his medications, etc.

We closed the business today because of the treacherous driving conditions as well as lack of customers! Yesterday Mark had a 3-hour early release at school, and he was completely out today. Tomorrow is a 2-hour delay. Maybe the rest of the week will even out weather-wise and all will soon be back to normal.

2nd Grade Christmas Program

In December, Mark had his 2nd Grade Christmas Program at NRCA. Rob and I were both able to attend, and Mark did a great job. Here he is pointing to his name on the board as a soloist. I've also posted a video!
Mark proudly pointing to his name

Close up

On Stage
Mark had to audition for this part, and we are so proud of him! It may be difficult to hear/understand, but he sings, "He set Daniel free from the lions in that cage - Nothing is impossible with God." 


Monday, January 10, 2011

Hospitalization #12 - Day 6

Gantt visited Brett at the hospital today - and they got to go to the playroom together!



As for Brett, port was not only infected with staph, but also 2 other gram-negative bacteria. Therefore, he's now on 3 different antibiotics I think to cover all those. It surprised everyone that he was growing something other than staph. He is going to have to have some IV antibiotics for 11-14 more days, and we are still using a peripheral IV in his hand. His pulmonologists don't really want him to have another central line (like a port or broviac) because it seems every time it gets infected. However, as I have said before, you can't go home on a peripheral IV, and it has failed every day and he has to get a new one.

After much deliberation between us (Rob and I) and all the "teams" involved (pulmonary, infectious disease, surgery, immunology), we have come to the conclusion to try for a PICC line tomorrow. In the best case, they can get a PICC line big enough to go home on when the time comes. If not, the hope is that we can at least get one to use instead of the peripheral IV while he's in the hospital. The advantage to the PICC versus the port-a-cath or Broviac is that once we're done with IV therapy, the PICC can be pulled out by a nurse - it doesn't have to be surgically removed. We can pull it out when we're done and he won't have any central line at that point to risk getting infected. This will give his body a little break. Hopefully this makes sense. I'm really tired.

Gantt walking down the ramp with Daddy watching him

Sunday, January 9, 2011

Hospitalization #12 - Day 5

Nothing new today either.  We got all dressed and ready for the Chiefs game today.  Unfortunately, the Chiefs didn't do the same.  Lost 30-7.  UGH!!

So he got a bath and donned his Grave Digger shirt and we toured the hospital.  The video is of us at Starbucks this morning.  The photos are from this evening.  Lots of fun together this weekend!!






Saturday, January 8, 2011

Hospitalization #12 - Day 4

No real news from today.  We just relaxed and watched some football this afternoon.  I did take him down to the cafeteria for a little bit.  He enjoyed some M&Ms as well as being out of the room!!!

Friday, January 7, 2011

Hospitalization #12 - Day 3

Jennifer is home for the weekend and I am looking forward to taking care of my little man for a few days.  I have several meetings next week, so I will not be able to come to the hospital.

Brett made it through surgery quite nicely.  By the end of the day he felt pretty good.  He was taken off contact precautions so I was able to give him a wagon ride around the floor for a while.  He had a big time flirting with the nurses.  He was blowing kisses and smiling like normal!

They drew more blood tonight to check on other bacteria that may be in his blood.  Nothing definitive yet, so we will just wait and see.  They also had to take out the line that was put in earlier today because it quit working.  They were able to put another line in his other arm.  It is so hard for an infant to keep a line in their arm.

Here are a few pictures from today........