Matthew Aaron-Wednesday, March 3- Evening

I think anytime the sun is out is my new favorite time of the day because with the daylight has come light (and not just from the sun)!

Today, we held Matthew in our arms and enjoyed watching him sleep. Thankfully he did not rebound jaundice! I also got to spend time with a dear friend, who brought clean clothes and chocolate. We also spent time reading the wonderful notes and comments from friends and family near and far. Our emotional state is definitely sunnier. Thank you!

Now for the update…

The smart doctors here at TCH are narrowing down the diagnosis, but we may leave without one. We are most encouraged that one potential diagnosis that both the geneticists and our neonatologist mentioned w/o conferring w/each other is just a collection of anomalies… meaning what we see, what we know now, is what we would be dealing with. I pray for that diagnosis, called Vacterl Association. There are still others being considered that are much scarier, with much less rosey prognoses. If it is a scarier diagnosis, we will deal with that when we find out. No need to worry now.

The down part of today is that Matthew has had a very difficult time feeding. He only took 2 ccs via the bottle at his last feeding, leaving 48ccs for the NG tube. We really need to get this figured out. The occupational therapists will be back tomorrow at 3pm. Matthew could use the prayers and positive thoughts that we will work this out at 12:00, 3:00, 6:00, 9:00 both am and pm…as these are feeding times.

Matthew and Darren met w/cardiology. Matthew’s heart abnormalities are not uncommon. There is nothing we need to do now, but we will need to follow up with another echocardiogram in a year. The heart may heal itself or may not. If it doesn’t, Matthew may live 70+ years w/it never being an issue. The good news is if in the future his heart abnormalities do become troublesome, there are surgical options available.

Matthew had his hearing test which he passed on right and failed the left but it may be a false fail. They will come back tomorrow morning to retest.

We had one blood test so far, with showed decreasing creatinine levels, which is good. They will want to repeat the test tomorrow to ensure it is still going down. They are concerned about these levels because they indicate kidney function. Speaking of kidneys, we haven’t heard from the kidney doctors today (yet) but hope to soon.

They are having serious trouble getting enough blood for the work up requested by genetics. That is what they are working on now.

Matthew had his skeletal survey. There is no bone in his hand where the thumb should be. But, he already does show favoritism using his index finger as a thumb. This will be important when we talk to the orthopedist at a later date to determine our options going forward. From what we have read, there are several options, with some of the more appealing ones needing surgery between 6-18 months of age.

We are amazed at the efficiency of the hospital. Our only comparison is to the Children’s Hospital in Austin, where we took Alyssa at 3 months for failure to thrive. There, it took us a week to get the tests we needed and she only had about a 1/8^th of the tests that Matthew is undergone in the 2 days he’s been here. We are so grateful for the wonderful doctors and staff!

After every consult with our neonatologist, we ask “what needs to happen for us to go home?” Today’s answers: he needs to eat, they need to be comfortable w/his weight gain, we need to get a consult from renal/urology, and we need all of the tests done that genetics, renal/urology, and nephrology are requesting or will request. From the list, it sounds like we’ll be here at least through tomorrow. Hopefully we’ll be able to go home Friday, but as is typical, we should know more tomorrow.

We have come a long way in 2 short days. When we first got here, I saw a picture of a baby who had been here and thought to myself “goodness, I don’t want any photographic memory of this”. Today, a camera is on the list of things for Darren to bring tomorrow. I want to remember when we are months or years removed from today just how far we’ve come.

Thank you for all of your prayers and positive thoughts. We cannot convey our appreciation in mere words!

Matthew Aaron - Wednesday, March 3 - Noon

Katie had expressed some concerns and prayers earlier this morning and I wanted to share the updates regarding them.

The occupational therapists came by for Matthew's 9am feeding this morning. He only took 13cc's via bottle; huge bummer. These people are s'posed to be the experts! Anyway, when his bottle feedings come up short, he gets the rest via his NG tube (this time 37cc's to get his needed 50cc's. The OTs will be back for tomorrow's 3pm feeding. This was a huge letdown early in the day on top of our concerns over his jaundice.

However an hour later during rounds, the attending physician told us (reminded since we had the same thing with Jax) that jaundice presents on the face first and continues down the body to the feet, and recedes the opposite way (feet to head). So Matthew's nose is still a bit yellow, but his legs are perfect. SO! No need for yet *another* bilirubin (sp?) test. Yay! Additionally, the attending and residents all agreed that he can start taking the bottle at each feeding (and only use the NG tube when necessary to finish up). Yay again!

Matthew's currently off getting a skeletal survey done (basically x-raying every bone in the body). The vampires need blood for three different lab tests yet, and hopefully they can get it all at once and soon. They tried all day for a large sample (approx 2 tsps) needed for a chromosomal scan, but his body wasn't havin' any of it.

Please continue to pray for Matthew's little body, and emotional and spiritual strength for all of us. As well, please pray for his doctors and those of all the tiny angels we've been near since our arrival at TCH. Please devote a special prayer for a talented phlebotomist for the blood draw.

Thank you all for the incredibly loving words of encouragement and prayer. We feel so much better knowing that we have an army behind us!

Matthew Aaron-Wednesday, March 3- Morning

Logically, I know that I gave birth 4 days ago and my emotions are normally all over the place at this point. I vividly remember sitting on the floor in our house 4 days postpartum w/Jackson crying “I don’t think I can do two kids”. That just seems so silly now. I’m hoping when I look back, all of this will seem as silly. For right now though, logic isn’t my ruling emotion. So, with that disclaimer, here’s the latest.

For our steps forward yesterday, I think we might have taken a little step back last night. Matthew alternates every other feeding from the bottle then NG tube. His 9:00p bottle last night did not go well. He spit out as much as he drank and had to finish his feeding on the NG tube. He’s also looking jaundiced again.

Hopefully the sun will bring us the good once again. The doctors do rounds about 9:00am and I’m looking forward to that. Besides all the other testing and consults scheduled for today, they’ll do another jaundice screen this morning, and I pray Matthew doesn’t need to go under the lights again. Not only do I need to hold him, but I’m worried about how long we’re going to need to stay here. We’d hoped we’d be here a day, and knew that it was unlikely we’d go home until at least tomorrow. But if he’s rebounding jaundice, there is no telling when we’d go home. I’m anxious to take him home. I need to see Alyssa and Jackson. They need to see Matthew. Last night when we talked to the kids, both of them asked us to give ‘Baby Bro-ter’ (as Jackson calls him) a kiss.

So, my prayers for today… that Matthew isn’t rebounding jaundice, that the occupational therapist can help us with his bottle feedings, that Matthew continues to get the tests he needs to figure this out, for the doctors wisdom, and that Matthew can feel love all around him.

Thank you for your continued prayers and positive thoughts! We cannot say enough how much we appreciate it.

Matthew Aaron-Tuesday, March 2- Evening

Thankfully, with the light of today, came hope.

We still know nothing about his condition, except that we are able to rule out about 12 of the possible 20 syndromes. Matthew is no longer jaundiced so he’s no longer under the blue light. He’s off IVs and he took fluid from a bottle today instead of the NG tube. His daytime attending doctor thinks that he will start w/the occupational therapist tomorrow to better take a bottle and maybe even breastfeed in time (avoiding having to go home w/a NG tube is our biggest goal). Matthew moved from the incubator to a crib. The best part of today is I got to cuddle with him. All of this is wonderfully uplifting for us!

In addition to all of the medical reasons, today, we had many more reasons to be hopeful. First, we have the most amazing friends and family. We have felt loved, supported and the prayers of so many. Thank you! Both Darren and I were in a deep dark pit of despair this morning and we are no longer there in a large part to the words and prayers we received.

Additionally, the doctors began running every test in the book so that we can have a diagnosis and know what to do next. Matthew has had xrays, ultrasounds, an echo-cardiogram, been checked by the geneticists, etc. He’s been sleeping through the majority of this ordeal, only to wake when someone pokes on him too hard. That is a blessing.

The results have been mixed, which is actually a positive. We needed to hear some good news and we finally did. Matthew’s head ultrasound came back normal, and his abdominal ultrasound came back ‘not unusual’ meaning he’s got the parts he needs, they just haven’t made their way down yet. As we expected, he does have some issues that point to a genetic disorder. He does have an issue with his kidneys (one is fused to the other), he has a small hole in his heart in between his ventricles, and he does have radial anomalies (related to the missing thumbs). Tomorrow we’ll meet w/the kidney specialist and the cardiologist as well as get a full skeletal scan.

The doctor is doubtful we’ll be able to leave before Thursday, but we’ll know more tomorrow. We are both staying up here again tonight, but tomorrow Darren will head home to spend time w/Alyssa and Jackson.

As we have still really don’t know what is in store for us in the future, we are going to continue to focus our attention on the right now. We have a lot to be grateful for at this moment … 1. The results aren’t all bleak! 2. We are able to cuddle Matthew today. Darren and I need to love on him and it was hard to not hold him. 3. We have fantastic family and friends. We feel loved. Thank you again for your prayers, love and support!! 4. I’m thankful we didn’t find out about Matthew’s uniqueness at our 18 week ultrasound. My wonderful pregnancy would have been marred with worry, worry which would have changed absolutely nothing. 5. We have wonderful parents who live in town. Alyssa and Jackson have been wonderfully cared for by Grandma Denk while Granddad and Granny Kendall have been here at the hospital to sit w/Matthew while Darren and I take a little break. 6. The Ronald McDonald House at Children’s is God-sent. It’s nice to be away from the antiseptic atmosphere to take that break…and get a shower and a quick nap. It’s only a short walk down the hallway and they even had a room for us for tonight. Maybe we can get more than an hour sleep tonight. 7. We have each other.

I’m sure we’ll have many more ups and downs, but we are thankful today was an ‘up’ day. Thank you for your continued prayers. We will provide updates as we find out more.

Matthew Aaron-Tuesday, March 2

As I sit here looking at my 3 day old newborn, in the stepped down NICU, in the incubator, under blue lights, hooked up to monitors, an iv and a NG (nose feeding) tube, with a future so uncertain I can’t even begin to think about it. I am stunned. How did we get here?

Less than 80 hours ago (Friday night), I was hoping Matthew Aaron would join us in the world. And in a whirlwind, 2 hrs and 15 mins, he did (1:47am Saturday morning). He had a hard time regulating his body temperature after birth. We swaddled and sat next to the heater. He wouldn’t nurse and as he got jittery, we were concerned his glucose was being depleted because of his cool body temperature. We tried to give him a bottle, and he took a little but was pretty much uninterested. We did this for the next 8 hours.

12 hours after birth (Saturday afternoon), we got him in to see the on call pediatrician. As she’s looking him over, the conversation with the doctor went like this: Dr- “Did you have an ultrasound?” Us- “Yes, at 18 weeks” Dr- “So you know about his hands?” Us- “What about his hands?” Only then did we notice that Matthew only had 4 fingers on each hand, no thumbs. We sat there in shock. How did we miss it? While we sat there in disbelief, the doctor called the neonatologist at the hospital to see if there was anything immediate she needed to do. After this consult, Matthew had a CBC blood draw which came back normal. They sent us home with a follow up appointment for Monday.

So, 14 hours after his birth (Saturday late afternoon), we started digesting this information. Suddenly, our future seems very scary. We don’t know if this is Matthew’s only uniqueness or just the first outward symbol of something else. Darren found an article on the Boston Children’s Hospital website that started to give us hope that growing up without thumbs will not be as limiting as we first feared. We go between being scared of what’s to come and being hopeful, knowing that we will do whatever we can to help Matthew become the full potential of the man he can be. Matthew is still not that interested in eating…not at the breast or the bottle. Though he is pooping and peeing, so we aren’t too concerned yet. We call a lactation specialist to come on Sunday.

Matthew awoke at 4:15 on Sunday morning, a little fussy but still not wanting to eat. So I had a good few hours to hold him and love on him. As I did, I realized that although the unknown was scary, that can be said for everyone in the world… none of us are guaranteed a particular future (even if we are born ‘normal’) and none of us are promised more than the moment we are in. An example of that is Layla Grace. There is a 2 year old little girl in our town that is dying of cancer (www.laylagrace.org). Her parents are having to come to terms with her life cut short. I realized I need to be thankful for the day that I have. Right now, he doesn’t need thumbs. If we can get him to eat, whatever is ahead we can tackle at that time. So Sunday morning seemed a little brighter.

My midwife came to do an uneventful follow up visit on Sunday afternoon, followed by the lactation consultant visit. We did identify that his recessed chin interfered w/his feeding. It looks as though Matthew will not be able to traditionally breastfeed. Okay, I’ll pump and give him breastmilk in a bottle, supplementing w/formula when we need to. Now, he needs to take the bottle. We try every few hours and sometimes we get him to take ½ oz.

Monday morning is the appointment with our family pediatrician. She had gotten a heads up from the on call pediatrician from Saturday, so she is prepared. We have a laundry list of concerns, every little thing is concerning to us…what is ‘normal newborn’ and what is ‘unique to Matthew’. Of our concerns, she has a few as well. The thumbs, the recessed chin, the undescended testes are tops on her list. Although each of those by themselves are treatable, she is scheduling a referral for us to see a geneticist to see if we can find out if these are symptoms of something larger. At the visit, she tests his billirubin to see if he’s jaundiced.

We hadn’t heard the results from the referral or the billirubin test by 4:00, so I call the doctor’s office to check. We get a call back from the nurse “the doctor will call you when she’s done seeing patients”. Darren goes to pick up Alyssa and Jackson from school as I wait by the phone. We should have realized this was a red flag…the doctor needing to call us back but we didn’t at the time. Our doctor called while Darren was out and told us to pack a bag, we needed to go get admitted to Texas Children’s Hospital. Matthew’s jaundiced and at 2 days, he needs to be treated at a hospital. It might as well be the one where the geneticist will see him too.

So, we head to Texas Children’s. To be admitted you have go through the ER. It is crazy! It takes us 2 hours to get a bed in the NICU. The doctor on duty talks to us about Matthew’s history, sets up the IV to combat his slight dehydration and he recommends the NG tube for nutrition until the occupational therapist can come help us to get him eating. The blue lights are on. He’s hooked up to the monitors.

The night attending spends a good 20-30 minutes with us. Going through some additional concerns of hers… in addition to the others, his big toes, his ears, and a heart murmur. She walks us through the litany of tests they will begin to perform. A chest xray, a head ultrasound, an abdominal ultrasound, a full xray of the bone structure, an ekg, possibly a MRI, a hearing screen, and full workup by genetics. Every doctor…every exam…is scarier. The bad news just seems to be snowballing. The only piece of good news is that by the end of our stay (which we were hoping would be a day, but looks like it will be no less than 2 days, but might be a week), we should know the full extent of Matthew’s uniqueness and we can begin to accept and prepare for our future.

They have to poke and prod him for blood samples. He cries, we cry. I’m looking forward to when the jaundice is gone and I can hold my baby. I need the comfort of his squishy little body, so I can remember that this moment is the only one I’m promised and I need to be thankful for it. Right now, everything else is just too uncertain.

We appreciate all the prayers and good thoughts you can send our way! Thank you!!

Happy Summer!

Well...it appears that I need to write on the blog so that between the 2 of us it gets updated on a semi-frequent basis. We've missed catching up during the spring but summer is just now arriving with the heat and excitement only summer can bring.

Starting our 'summer', we took the family on a 10 day road trip to Florida. We visited w/Aunt Jeannie and Uncle Jay in West Palm Beach for a day before heading to Orlando to visit The Mouse. There we met Darren's cousin Jenn, her husband (Deron) & their 2 boys (Jacob-8, Kyle-5) and Jenn's college roommate Karen, her husband (Brian) & their kids (Evan-8, Emma-5). We all stayed together in what felt like a palatial abode... 3 bedroom, 4 bath villa at Animal Kingdom lodge. We enjoyed our 7 fun filled days at Disney World! While we were there, I noted my favorite Hoy kid memories of the trip.


Day 1- Magic Kingdom
Jackson pointing and saying "bus" at all the Disney transportation buses (and there were 5-10 buses around at all times)
Alyssa seeing Cinderella's castle for the first time
Riding Its a Small World (still one of my favorites)

Day 2- Epcot
Jackson running up to Pluto at dinner..."guess the kids aren't afraid of the characters"
Aly giving high 5s, hugs & kisses to all of the characters
Pluto sniffed my backpack while we were w/taking a picture w/Mickey (very cute)

Day 3- Disney Studios
Jackson saying "Buzz" at Buzz Lightyear
Aly waving to all the characters during the parade

Day 4- Animal Kingdom
Chip following Jackson as he walked away after a photo
Jackson was totally enamored w/Donald
Timon flirting w/Aly during the Festival of the Lion King & Aly blowing him kisses
Alyssa yelling "hello" to Donald and Mickey during the parade

Day 5- Epcot
I got to ride Mission: Space, closest I'll ever get to being an astronaut which was my childhood dream
Jackson riding the pool cue around the hotel room (there was a full size pool table in our room)

Day 6- Magic Kingdom
Aly & Jax waving to Zazu and Iago at the end of the Tiki Room performance
Jackson saying "Donald" (very emphatically when he saw Donald)
Alyssa wanting to know where Raja & Abu were that day when we talked about meeting Jasmine and Aladdin--Jasmine told her Raja was at Animal Kingdom hanging out with his friends
Alyssa waving to Mickey & gang at the parade
Alyssa showing her Mickey Mouse Clubhouse book to the characters at dinner

Day 7- Disney Studios
Alyssa singing w/Ariel at the Voyage of the Little Mermaid
Alyssa reaching out to touch the 3-D jewels in Mickey's Philharmagic
Jackson playing find Donald in the gift shop while it rained (He found about 100 of them)

I think we have finally recovered from vacation, which is good given we've been home for 2 weeks today. This weekend we'll celebrate 'Daddy's Day', which is our Hoy House tradition. Instead of exchanging gifts for Mother's Day or Father's Day, the respective parent gets a 'you call it' day the day before the holiday. The entire family does whatever that parent wants to do. I think Darren wants to go to the pool and to see the movie Up for his day. It should be great! Sunday, we'll celebrate father's day by visiting the grandfathers. Happy Father's Day and have a good weekend!

The Hoy House ... in pictures!

Lots has gone on since last Thursday, but we've been so busy doing them that I haven't written about any of it.

Before I get to any of that, I wanted to devote a post to a wonderful photographer and the time we spent with her last Friday afternoon. My friend, Annemarie, agreed to photograph our family at Dick and Margie's place in Montgomery.

We can't wait to see the remainder of the photos, but if you'd like to see more of Annemarie's magic, visit the slide show she made for us. Have a great wknd; after seeing these, ours is off to a great start!