Holland

We received this from Darren’s sister, Matthew’s Aunt Karen.

“WELCOME TO HOLLAND

by
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.”

I cried as I read this. I am no longer mourning the fact that we didn’t go to Italy. We’ve been to Italy twice before. It’s wonderful, but I’ve never been to Holland. I’m excited that we are going to a different place. We'll enjoy and cherish Holland. It will be good for our family!

With that though, I am scared…when I think too far in the future, about all of the unknown. I’ve never been to Holland. What is it going to be like? How am I going to navigate my way around? Then I’m reminded again of what I realized that early morning before our hospital stay…this moment is the only one we’ve been promised. No one is promised a particular future.

At this moment, I am thankful we are joyfully experiencing the typical newborn issues (Matthew’s sleeping when he should be eating and awake when he should be sleeping) and learning the craziness of 3 kids 4 yrs old and under. I just need to be reminded (probably time and time again) that we’ll deal with tomorrow when it comes.

Thank you to everyone who sent welcome home messages and have followed and celebrated with us!

Back to the Hoy House

After 8 days and 8 nights at Texas Children’s, we are home!! It was the most fantastic feeling to walk out of the hospital with our sweet Matthew, go to pick up Alyssa and Jackson and come home as our family of 5!

What a difference 8 days makes. We walked into TCH scared…about what we would find, about the future, just about everything. Today we are joyful! We still do not have a diagnosis, but we have a much better understanding of the symptoms. Matthew’s uniquenesses: absent radius (no thumbs, the most visible symptom), a small arterial septal defect and a functioning bicuspid valve (heart), an ectopic fused kidney (1 functioning kidney), undescended testes, and moderate to severe hearing loss on his left side. All of these things are not limiting and are either treatable or may never become problems or need to be treated. Thanks be to God!

Whatever the diagnosis, whatever the future, we have been reminded to appreciate what we have and to be thankful for the moment that we are in. We already have a page of follow up appointments in the next weeks, months, and years. We know this is not the end of our journey but the beginning. We love our Matthew and will do everything in our power to help him grow into the man he was destined to be.

We have a huge list of thank yous. Thank you to our family and friends, for the prayers, positive thoughts, well wishes, the offers of help and support, the gifts, the food, the visits, to the staff at TCH, Dr Cox, Dr Wortham, Dr Burrows, Dr Scott, night nurse Nicole, the Ronald McDonald House, to our special angels in heaven and to God.

Matthew Aaron - Tuesday, March 9 - Afternoon

Quick update this afternoon.

Occupational therapy came by this morning and taught me how to wrap Matthew's wrists to stretch his muscles and ligaments to a more natural position this morning. We'll change out the wraps every couple of days.

His circumcision was this afternoon. A bit traumatic for Matthew (and Katie), but it's done. They're holding him for observation for two hours to ensure that his bleeding and swelling are contained and within normal specs.

With a bit of luck we'll be sitting on the Northwest Freeway in rush-hour traffic this evening with everyone else ... heading home.

The last eight days has been a lot of things to our little family. Tiring, traumatic, emotional. Most of all it's been an eye-opening experience. Prior to Matthew's birth, we were taking much of our wonderful life for granted. Matthew's arrival changed all of that, of course. We are incredibly thankful for our life and for each of our amazing kids. Please take this opportunity to love on those in your life that are important to you. Spend a few minutes outside, not doing anything; just enjoy being outside. Live your life the way you want to, not the way you feel you need to ... I know I ended both of those phrases with prepositions.

Lastly I want to thank all of you for the wonderful words, countless thoughts, and infinite prayers that have been said on Matthew's behalf over the last week. Katie and I would not have survived this without our faith and you. I know that this is not the end of our journey, just the end of the beginning. We will continue to use this space to update you on his ongoing and never-ending doctors visits. Please continue to pray for our earthly angel.

We're goin' hooooommmmme!

Matthew Aaron-Monday, March 8- Evening

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Today continued to be a flurry of activity.

Matthew was in the midst of an ABR diagnostic test (high spectrum) for his hearing during the previous blog post. He hears normally out of his right ear, but has moderate to severe hearing loss on his left side. We are being referred to an ENT to help determine the cause and potential treatments. Thankfully, with his right ear, he should develop speech and language normally. The audiologist indicated that the hearing issue is not uncommon when there are kidney issues. Who knew? (Not I) We will have to schedule another ABR diagnostic test, this time w/the low spectrum checking not only the hearing but if anything changes over time. We pray it does not, or if it does change, only for the better.

Our attending neonatologist, Dr. Cox (Cox happens to be my paternal grandmother's maiden name!), stopped by before she headed out for the day and indicated that tomorrow may be our day to go home. I’ll believe it when all of us are at our home in Cypress, but I’m hopeful.

Matthew’s feedings have continued to go well. He is a pokey eater, as was Alyssa, but he's finishing his bottle w/some encouragement. We did a happy dance next to his crib when the NG tube was removed today. Well, I did a happy dance and Matthew screamed. I guess I wouldn’t have liked someone pulling a tube that was in my belly out of my nose. Ouch.

More good news arrived today. We received a follow up visit from nephrology. This itself is pretty exciting given we waited for 4 days to see them originally. But they also brought good news. Although Matthew’s measure of kidney function is a bit decreased, they are not concerned given his 2 kidneys are really acting as one. We are to ‘wait and see’. They will monitor his kidney and kidney function over time through creatine levels and ultrasounds of the kidney. We want to make sure that his kidney(s) grow with him over time. If it does, then there is no problem. If it doesn’t, he will have continued decrease function in years to come and we can address that then. The renal attending indicated that in several months we should be able to get a feeling of the trajectory. “No intervention at the moment.”

That seems to be the theme of our stay here at TCH. We’ve uncovered much of Matthew’s uniqueness (and now I have a pretty good idea of what forms in the womb at 7-8 weeks) but much of it does not impact him now and may not ever become a problem in the future. There are still scary diagnoses that genetics may come back with, but until we know, we are treating the ‘symptoms’ and all of them can either be addressed or are not limiting. What an answer to our prayers!!

This week has been both uplifting and draining at the same time. We started in the deepest pit of despair which has turned to light and hope. We have so much..wonderful family and friends, a fantastic care team here at TCH, the prayers and positive thoughts of so many, the RMH, our wonderful kids…and we are so grateful. Although this week wasn’t in our plans, I’m thankful for the time I’ve been able to spend loving and caring for Matthew. Tomorrow (hopefully) I won’t have much uninterrupted ‘loving on the baby’ time. I’ll have to fight Alyssa for it.

Matthew Aaron - Monday, March 8 - Afternoon

Today has been busy!

Matthew's blood was drawn around 5am this morning for a chem7 test, specifically to check his creatine level. It came back .6, which is lower than it had been (.7), but still above normal for his age (< .5). So off we went for a VCUG at 12:30pm to check for reflux from his bladder. The VCUG came back negative (no reflux). This is good and bad. Good in that, he doesn't have reflux, which he shouldn't. Bad in that, he'll probably need more tests once nephrology (sp?) sees his results. Basically, they move onto the next thing that might be wrong ... whatever that might be.

When we returned from the VCUG, the audiologist arrived to run Matthew's diagnostic ABR hearing test. This was something that we could leave the hospital without, and would do out-patient, but since we're already here. We'll post the results when we have them.

Occupational therapy came by again this morning. Matthew's attending physician, Dr. Cox, is concerned with the angle with which he holds his wrists ... looks very uncomfortable to me, but he likes it. So they would like to use tape on his arms down to his fingers to hold them in a more natural position, and get him used to extending his wrists to prevent tightness down the road. More goodness that we wouldn't be receiving if we'd gotten our wish to leave last Friday!

Feeding update: Matthew's feedings have progressed VERY well. Over the wknd, after he lost a little weight, the docs upped his feedings from 60cc to 65cc. Katie and I were very concerned because the 60 was taking forever ... 65 would be even worse, right? Wrong. Moving to a faster flowing nipple helped tremendously and Matthew's weight was up from Saturday to Sunday evenings. During rounds this morning, Dr. Cox decided with her resident, Dr. Wortham, to add formula powder to Katie's breast milk, increasing the calories from 20 to 24 per fluid ounce. More bang for the buck, basically. So instead of struggling to get 65cc into Matthew, we can cut back to 56cc. His first bottle with the "fortified" milk at noon today, Matthew finished his 56cc in 12 minutes! He hasn't needed the NG tube to finish any feeding in the last 36 hours ... we hope it will be removed soon.

We have emotionally moved from "Get us out of here now!" to "Run every last test that's necessary, then we'll leave." The lull of the wknd was difficult on us, but with Monday comes increased activity around the hospital, and more importantly around Matthew's crib. Our resolve grows, despite our bodies' fatigue.

A huge thank you to everyone who's gone above and beyond to help us through this difficult time. People have visited us here at TCH, cooked meals for us, volunteered to pick up and watch Alyssa and Jackson. I could go on and on and on. As well, thank you for all who have offered to help in anyway that they can. The distances are great, but your hearts are close.

Please keep Matthew and his care staff in your prayers. God bless each of you for your love and kindness.

Matthew Aaron-Sunday, March 7- Late Evening

Two late breaking developments this evening-

1. We received a visit from the nephrology fellow (aka renal or Dr Burrows) this evening! She reviewed the kidney ultrasound and at Matthew’s blood work and then looked him over. She ordered a Chem 7 (more blood work) to check his creatin levels and whatever else is in the Chem 7.

Here are the if->then statements: If the creatin comes back high, then they will do a VCUG which checks for kidney reflux. If the VCUG comes back negative, then they will order further tests. If the VCUG comes back positive, then they will treat the reflux (most likely surgically). If the creatin comes back normal, then no more tests will be needed. {Whew, am I ever glad I put a notebook in our bag as I’d never remember all of this stuff w/o writing it down!}

Matthew has what they call an “ectopic fused kidney”. Dr Burrows indicated that there are usually no symptoms with this anomaly but sometimes there is an increased risk of infection. If he does have symptoms, we will follow up with urology for surgical options.

We should receive a follow up visit tomorrow from the attending nephrologist.

2. Matthew gained an ounce since yesterday! The additional 5ccs per feed (probably combined w/the fact that he’s getting stronger and not expending as much energy to eat) seems to have reversed the weight loss trend.

Our departure date is still unknown, but I feel like we are on our way. I’m a little doubtful that it will be tomorrow. I am hopeful for a quick blood draw in the morning, followed by whatever needs to come next. We’ll just have to see. Until then, I’m just going to enjoy spending as much cuddle time w/my beautiful Matthew as possible (and hopefully get a little bit of sleep).