Matthew Aaron-Saturday, March 6- Morning

Happy 1 week to Matthew! Everything that has transpired over the last week still seems surreal. The birth, discovering Matthew’s uniqueness, the hospital stay, the outpouring of love and support…it has been quite a week.

So first, the good news: At 6pm last night, Matthew finished an entire bottle (2 oz). No NG tube! For his midnight, 3am, and 6am, he’s finished all or most of his bottle only needing 7ccs via the tube. We are doing a happy dance after his feedings. He just needs to keep it up.

We believe Matthew is out of the woods. Most of the issues we’ve uncovered are not immediate. Our one immediate concern though is his kidney function. Please send your prayers that we get seen by renal soon. We believe that they will want more tests and we hope that they don’t wait until Monday to request them, which would probably lengthen our stay.

Until yesterday, Matthew’s social calendar was full. Tests, blood draws, pokes, prods, exams, and meetings with specialists filled his day. Now that we have come to the end of the week, we are hurrying up to wait. We are still waiting for a visit from renal and a visit from physical therapy. We wait for every 3 hours so we can feed him. We now have a lot more downtime. Thankfully last night we had some wonderful friends visit. If you are in the area and would like to visit, we would welcome the distraction from the waiting. Please give us a call or text to let us know to expect you.

As Darren and I were planning our 3^rd all natural birth for Matthew, we joked that Darren is my surrogate decision maker during labor. I know that I cannot make any decisions during labor so don’t even ask me. I think that’s almost what we’ve needed this week…a surrogate decision maker. I could have used someone to tell me what to do. I don’t know if it’s been the lack of sleep or that my brain is preoccupied with other things, but I don’t feel that my complex reasoning (or sometimes my basic reasoning) faculties are firing on all cylinders. Thankfully between the 2 of us we’ve been a functioning team. As well, one of our sweet friends is helping to coordinate meals when we get home, taking charge of the rudimentary decision of basic sustenance for which we are very grateful.

Speaking of being grateful, we will forever be grateful the love and support by our friends, family and friends and family of our friends and family! Thank you!

Matthew Aaron-Friday, March 5- Noon

After getting some rest, Darren at the chair next to Matthew’s bed and I in our bed at home, we feel ready to take on the weekend here at TCH. I was disappointed we all won’t be home for the weekend, but hopeful that we’ll go home early in the week without a NG tube.

It will be a very happy day at the Hoy House when we are all at home. Alyssa’s first words when she came into my room this morning was “where is baby Matthew?”. The ‘little mommy’ as I’ve started calling her, misses her baby. Last night and this morning, Alyssa and Jackson were a little more emotional than usual, which isn’t surprising given all of the changes and routine modifications this past week. (And to be honest, we are too!)

Not much activity/change with Matthew since Darren’s update yesterday. We are still waiting for renal to come and evaluate Matthew. His creatin levels are still high which indicates there might be an issue w/his kidney function. Our neonatologist believes that they’ll want some additional tests. Physical therapy came by to see him but he was feeding so they’ll be back this afternoon. The lactation consultant came by , just to see if he has an easier time traditionally feeding than the bottle, as we really want to do whatever is easiest for him. But Matthew had just fallen asleep after his 2 hours of being awake after his 9am feeding. He's been pretty tired from all of the poking and proding and is still taking 1/2 of his feedings through his NG tube. Hopefully this weekend, without the huge blood draw, we'll be able to concentrate on getting that percentage from the bottle higher and higher.

Matthew has been a total blessing to our family. Although his uniqueness was totally unexpected, we have already learned so much from him in his 6 days. We took so many things for granted, and this was a great reminder that we should be thankful for each and every day, every moment. We had gotten into routine in our lives, doing things one way, and expecting the same from baby #3. Baby Matthew is going to help us learn to do things in a whole new way. Finally, we have never felt more loved and supported. The prayers, notes of support, offers of help have been unbelievably uplifting. Thank you!

Matthew Aaron - Thursday, March 4 - Afternoon

After a wonderfully normal (chaotic) evening with Alyssa and Jackson, I came back to TCH this morning to Katie and Matthew. Katie headed home this afternoon to get some normal chaos at the Hoy House.

Given a second chance to pass his hearing test, Matthew laid completely still ... movement screws up the test, and I'm thinking, "how in the world do they ever get a good test?" Anyway, his right ear failed again. False failures (wrap your head around that one) are quite common; this failed test just means that he'll need to have another test. Of course. The results of the follow up test aren't crucial so we can be discharged and have a diagnostic ABR done as outpatient.

Matthew was determined not to give the vampires any more of his blood so they finally relented and got it a different way ... through his belly button. They catheterized him for only a few minutes to draw a ridiculous 13.5cc, and then put back 10cc of saline to offset the volume drawn.

Urology and audiology have said that they can see him outpatient, so we're not waiting on them to be discharged. If they show up, *GREAT*, but let's just say that I'm not holding my breath. Renal, on the other hand, wants to see him, but don't do rounds until between 7 and 9 pm ... so we wait. Again.

Matthew has decreased muscle tone, in comparison to standard. Compared to what he was when he got here, he's getting better. Physical therapy folks are s'posed to come by tomorrow. I'm eager to learn some techniques for helping Matthew become the incredible child we all expect him to be.

One of our challenges, of course, has been getting Matthew enough milk into his belly. The occupational therapy folks (OT, for short) came by yesterday, and other than using an odd bottle/nipple, I really didn't get a lot out of what good they were. Nothing against these nice people, but having had a horrible eating infant in the recent past (Alyssa), I know most of the tricks to get a baby to eat. They came back by today for Matthew's 3pm feeding, but we were a little bit preoccupied by the Great Blood Letting of 2010 around that time, and they disappeared. Fine by me actually because as Katie already mentioned, Nicole, our incredible nurse from Wednesday night, tried feeding Matthew more like a premee (sp?). He apparently doesn't know yet that he has to stop sucking and actually swallow what is in his mouth. So every third suck we pull the bottle a bit to let him catch his breath and swallow the milk he has already. I'm interested to see what the OT folks will have to say when they stop by tomorrow. "Thanks for figuring this out for us; we had no clue what to do." hehehe

I've been procrastinating on this last part trying to make sure I wrote all of the positives. Looks like we may not be able to go home before this weekend. Our attending physician, Dr. Cox, feels that Matthew is making good progress on his bottle feeding, but he's still relying on the NG tube to finish feedings and for entire feedings when he's exhausted from procedures. She said that she would rather he shed the NG tube here at TCH prior to going home to avoid regressing on the wonderful strides that we've made. She sends kids home with NG tubes when it looks like it'll be weeks before they shed the tube, so I took that as a positive. *shrug*

So it looks like we're going to "hunk'er down" here at TCH for the weekend. I want to thank Harris County Judge Ed Emmit and Hurricane Ike for that horrible hick phrase. We're still processing what that means for us (parents) and all three of our kids. We're getting so close, it's hard to watch the goal (of getting home before the weekend) slip away. Matthew can take the time to figure out the whole bottle thing, and I'm sure at some point Alyssa and Jackson will get to visit "Baby Maa-few", and enjoy more time with their grandparents.

We keep saying it, but huge thank yous to everyone who has reached out to us this week. We would have been in a much different place mentally without your kinds words and effective prayers. Please continue your prayers for Matthew, his doctors and nurses, our family, and the wonderful friends who have been supporting us this week.

Matthew Aaron-Thursday, March 4- Morning

Matthew and I had a wonderful night!

Our 4 blessings:

As I was posting yesterday evening, the nurses were working on the blood draw for the genetics test. They need 10ccs of blood and they were able to get 5ccs. This was a huge accomplishment as they have tried no less than 6 times for this particular draw and were never able to get even 1cc. Thankfully his sample can be gathered at different times, so they will work to get the second half later today. (Blessing 1)

Over the last few days, I’ve been having symptoms that I’m doing too much for being a few days postpartum. Not a surprise. Sleep is rare. It is a hike to go get food and to pump every 3 hours. I’ve probably walked more since Monday than I did the week before Matthew’s birth. So to ease our minds and to make sure my symptoms were just from overdoing it and not more, I called my midwife Jane last night. We talked about what was in the range of normal and what I needed to be on the lookout for. She asked that we check my blood pressure and keep an eye out for a few things. During our conversation, Jane also suggested I pump next to Matthew instead of hiking to the milk bank. What a wonderful suggestion. I didn’t even know I could do that! I’m so glad I called her! (Blessing 2)

The days go slow but somehow fly by right now. I looked up at the clock yesterday and it was 7:30p. I thankfully got a room at the Ronald McDonald house again. It is such a wonderful place and unbelievable how good a few hours of sleep feels. I knew I needed to check in to get my key and then head to the other building to grab a bite to eat at the cafeteria. I was dreading all of the walking, but really needed to eat. When I walked into RMH, I was already a little emotional because I was grateful for the room and I flat out cried when they had dinner there. (Blessing 3)

Enter an answer to our prayers, Nicole. She is Matthew’s very compassionate night nurse. First, she found me an adult blood pressure cuff. (My bp is a little high but not alarming. We'll keep an eye on it.) Then we bathed Matthew. For the first time all day, he was wide wake. It was fantastic! Given his huge blood draw earlier, we allowed him to sleep while he took his 6p feeding through his NG tube. With him awake, we needed to try the bottle again at 9p. We tried the special OT recommended bottle and he wasn’t interested in it at all. Nicole recommended we try the traditional bottle again. She watched him eat and commented “he eats like a preemie and let’s try this…” Her suggestion worked like magic. He took almost all of his feeding through the bottle. We just had to finish up a few ccs on the NG tube. The same for the midnight feeding! I got a few hours of sleep, and did Matthew so his 3a feeding was NG tube. His 6a feeding was 2/3 bottle! Talk about an answered prayer!! (Blessing 4)

We have so much to be thankful for…our beautiful 5 day old Matthew, (and Alyssa and Jackson too!), the love and support of our family and friends, the smart doctors and compassionate nurses here at TCH, yesterday, last night, and today!

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.