Saturday, May 26, 2012

3v3


Abby participated in her very first 3v3 tournament a couple of weeks ago with some girls she has been playing soccer with for the past couple of years. It was so much fun to be at the soccer field for a good portion of the day and watch this little team of gals develop into a purdy darn good team. Abby seemed to have found her perfect position in the game this year, as she makes a really great defender. Through the 4 games they had this day, she only allowed one shot to be scored while she was the defender. The joy and elation of a parent watching their child succeed in something is pretty indescribable. I'm proud of my sweet girl.

Sunday, May 13, 2012

Motherhood


Raggedy sneakers tracking in school playground sand on a daily basis, cleaning countless toothpaste spots off the bathroom mirror every couple of days, wiping up spilled drinks at the dinner table and untangling the knots in her necklace each time she wants to wear it. Holding your breath while transporting the smelly shin guards and soccer cleats, buying new ballet tights when the holes get too noticeable, and trying not to brag too much to others of the incredible accomplishments of your child. This is motherhood.
Writing secret love notes on napkins in their lunch boxes, spending half an hour trying to get rid of the stain on their favorite shirt, and changing all the daily plans after receiving a call from the school nurse. Volunteering in the classroom just so you can inconspicuously get to know your child's friends and acquaintances, sending money for fieldtrips and teacher gifts, and secretly hoping that they are never too embarrassed having you around their school so much. This is motherhood.
Knowing how to silence an IV alarm and restart it once you have successfully fixed any occlusion, sitting in uncomfortable blue chairs all day long just so you can be beside your child, becoming accustomed to the sounds of bubbles from the humidified oxygen, beeping from various alarms and interruption for vitals throughout the many hours of the day, and staying awake most of the night due to worry, adrenaline, and intense heartache. Watching movies, snuggled tightly together in a hospital bed, feeling the warmth of a courageous little boy's skinny arms wrapped tightly around your neck while he proclaimed his love for you, and praying countless times that God will protect this child. This is motherhood.
Downloading Kidz Bop songs on your phone, enduring terrible Alvin and the Chipmunks movies as soon as they come out in the theater, and reading "Bark George" for the 200th time. Scheduling playdates in many of the free spaces on your calendar, coming up with creative ways of teaching siblings how to love and honor one another and enjoy the other's company, and having heart-wrenching emotional conversations about life and death. This is motherhood.
Special trips to Justice for incredible report card grades, knowing the names and super hero actions of all the Avengers on the Super Hero Squad, and allowing cute and hideous posters to be taped to bedroom walls. Letting them win every once in a while on their various board games, listening to their dreams and aspirations of what they want to be when they grow up, and trying to teach them daily about acceptance, perseverance, good manners, and understanding how to perceive and act in certain social situations. This is motherhood.
To mimic the P&G commercial, motherhood is the best and hardest job in the world. While we keep our children under our immediate care for only about 1/4 of our life, it is something that changes us completely and prepares and affects them for their lives in ways that we honestly can not imagine. I want to always remember these years...the good and the bad. The easy and the hard. The most rewarding aspects and the heartbreaking ones. Like I have told so many new mothers lately...it sounds like such a cliche', but it goes by so fast. You will always be a mother to your children, but you only have these few years in their childhood to make the most difference in their lives. Experience it with them...and enjoy every aspect of it.

This is motherhood.

Friday, May 11, 2012

The Natester



Natey boy is home. After a good long nap today and his 5th blood draw of the stay, he was discharged from the hospital a whole lot better than when he came in. We still are just assuming that he had some gastro-virus, even though his labs show that he had a clear left shift on his CBC which usually signifies some kind of bacterial infection. I really don't think he had a bacterial infection, but I am not convinced it was a virus either. I think his body just crashed and started going a little haywire metabolically for whatever reason.

That's the problem with medicine sometimes...and especially the problem with a kid who has so many "systems" involved and whose body doesn't play by the rules. They always seems to have so many issues that don't make sense. This time, it would be some of his lab values.

The docs noticed today that his liver was enlarged now, which is something that we totally expected. Due to how high his liver enzymes got and his history of hepatomegaly, I would have been more surprised if his liver didn't swell up at some point over the next few days.

But all in all, the little guy is doing great now. His energy and muscle strength is back to his more normal level, and other than some mild discomfort from feedings, he is doing excellent. He still isn't eating much of anything, but that makes me so thankful for his gtube...we would have been in the hospital a whole lot longer if it wasn't for that.

All in all, it was a good few days. If we erase the stress and adrenaline of the entire first day he was in, the rest of the time was actually fun for the little guy as he got lots of snuggle time with some of his favorite people in the whole world...








Thursday, May 10, 2012

Quick changes


We have learned over the past 4 years not to be surprised when our plans are changed in a split-second. My OCDness of wanting to know what is happening at what time and where a few weeks in advance has been replaced with the capability to fly by the seat of my pants fairly well.

This past week was like every other week lately...so busy. Yesterday was by far our busiest day of the week with plans of me volunteering in Emma's class, Jay wrapping up his trip to South Florida for meetings, and the girls having one last practice and their performance in the mini production for Rejoice. Only, all of these plans were thrown into the air when Nate woke up vomiting.

Within about an hour, I knew that he needed to get to the hospital, so I made several quick phone calls trying to juggle the girls schedules by farming them out to people who could take them to their practice after school, getting a hold of Jay who dropped everything and immediately started making the long drive home, and making sure that some of his doctors knew that the little guy was headed in. We have so many friends here that will help us out in a second, and that is such a blessing. It truly does take a village to raise my children sometimes.

Nate was quite sick when we reached the ER. They quickly got him back and immediately started an IV and dextrose. His labs showed that his body was in stress with several of his metabolites being significantly off. His lactate was high, his AST and ALT (liver labs) were 194 and 278 when they should be under about 40, and he had an incredible amount of ketones in his urine measuring 150, along with several other labs being abnormal. Obviously the little guys body was in quite a bit of stress.

The theory at this point is that he has contracted some virus that caused him to start decompensating quickly and for his liver to freak out a bit. We have seen elevated liver numbers in him several times, but nothing like the labs we saw yesterday. The other strange thing is that his white count was elevated and his absolute neutrophils were significantly elevated as well. This "left shift" is usually seen in bacterial infections, but we couldn't find any source of infection and he has improved with the massive amounts of fluids they are pushing through him, so it seems that he doesn't truly have a bacterial infection. Perhaps it is just his immune system freaking out a bit?? His poor little body always has us scratching our heads over something.

After several hours on 150% maintenance fluids, the little man started to perk up late afternoon. And by this morning, he was back to his funny, cute, and ornery personality. We started g-tube feeds a little bit ago at 10ml/hr and are going to slowly work our way up to a rate that we can go home on. If he continues to do well, hopefully we can go home tomorrow.

I know that I have mentioned several times how much we love our team of doctors and nurses here, but I am still constantly in awe at the care we receive most of the time. Not only have we been under the wonderful care of the general peds team here, but we have also been able to be in close contact with several of our "regular" docs...with a few of them coming in to see how Nate was doing, even though he wasn't on their service. It is amazing to see the care and devotion they have for the little guy and our family, and I am so thankful for them all.

And with this being National Nurses Week, the Natester has really enjoyed catching up with all his peeps here. He is on a different side of the floor than he is usually, but several of these precious souls have come over before work, after work, on their breaks, or on their day off to come and visit with the little fella. And he is soaking up every last hug and kiss from them. I love seeing the relationships he has with his caregivers.

I really missed not being able to see the girls' performance last night. They have been practicing for it all spring and have been so excited about it...but I am so happy that Jay was able to get home in time to go to it. The girls are extremely resilient to the quick changes we have to make periodically and to being bounced around from family to family, but we do try to make things as normal as possible for them when we can.

Thanks for your prayers for Nathan. Yesterday morning was the first time that the little guy has frightened me with how quickly he went downhill. But I am so thankful with how well he has responded to the treatment and hope he will be able to head home in the next day or so.

Tuesday, May 8, 2012

Gardenias


It was the gardenias that did it...

The start of teacher appreciation week prompted an unusual excitement in the girls as they gathered their homemade cards and made sure we arrived extra early with our bouquet. Monday of this yearly week is usually the day that the students bring a flower to their beloved teachers, thanking them for an incredible year of love and devotion. As I was arranging the flowers in a vase, one last student came in a little past the late bell, clutching some beautiful white flowers that she had picked from her yard. She happily handed them to me to be arranged with the rest of the flowers, commenting on how good they smelled. Without hesitation, I pulled the delicate petals to my nose...and a whirl of emotions and dread instantly took over my heart.
Its funny how the brain works sometimes...how our senses are often connected to our memories. Hearing certain Sarah Mclachlan songs instantly transport me back to the summer of 1998. Eating Wisconsin Cheddar Soup will always remind me of the days when I would skip school with friends to eat lunch at Atlanta Bread Company. Seeing Pez candy immediately sparks my memory of my grandmother holding me like a football while sprinting up the aisle of the church as I puked all the way to the bathroom. I had obviously eaten way too many Pez that day and couldn't touch the stuff for quite a few years after.
And the smell of gardenias...that delicately sweet, perfumy scent will always bring instant dread and a sense of intense fear to my heart as the memories of May 2008 come flooding back to my mind. You see, after a couple of months of speculation in regards to the health our newborn son, that month was the first time we knew that something was seriously wrong with our child. That was the month we were told that his medical oddities were not transient and the length of his life could be shortened. That was the month that I cried more and harder than I ever have in my entire life.
Seeking quiet time, I would walk or run in the evenings. During this time, I would beg God for strength and guidance as a mother and healing for my son. It was also during this quiet time that I mourned for the dreams I had envisioned for my child and our family and thought about the various scenarios and trials that may lie ahead of us in this new, frightening turn of events in our life. And as I would walk the streets of our neighborhood, the delicious smell of the budding gardenias in many of the neighboring yards would fill my nose.
Sometimes the smell is now a therapeutic scent...something to remind me of the amazing ways in which God blessed us during that tumultuous month and has continued to bless us so much since then. I am thankful for the life God has given us. Although my mind does still become encased with sadness of the uncertainties of my son's life, I no longer continuously dwell on the painful aspects, nor mourn the life Nathan does not have...because by the grace of our almighty God, this child is very much alive and enjoying his life. And so shall we.
But my heart still continues to be overtaken with sorrow this time each year when I smell the flowering gardenias that remind me of that fateful May, 4 years ago, when our lives changed forever.

Tuesday, May 1, 2012

Easter


Really enjoying every aspect of our life right now with school, book fair, and the ending of most the girls' extracurricular activities before everyone breaks for the summer. This time of year always proves to include some of the busiest and craziest days of the year. So, the blog has been put way down on the back-burner for the time being. Turns out that when you have very little time to even think, remembering to post on here can be quite difficult. For the time being, here are some pics from Easter.


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