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).

Matthew Aaron-Sunday, March 7- Evening

Dr. Personable from earlier today came back by and put a positive spin on nephrology (renal) not showing up. If Matthew had concerning labs or was showing signs of needing dialysis, they would have showed up before now. Hmmm… his BUN level is normal and his creatin levels are elevated but they aren’t going up. As well, his ‘output’ is normal. Dr. P might have been correct, but we still need to see renal before we leave and this is our last outstanding hurdle, as Mathew has his eating issues under control (we hope).

The feeding update—Matthew has told us (in his way) that we shouldn’t assume we know what he can or can’t do. I was skeptical this morning that he would take 65ccs per feeding as we’ve been struggling to get 60ccs in 60 mins. I am thrilled (and humbled) to say that he has proven me wrong! What a great lesson to learn…don’t assume ‘ability’ or ‘inability’. Matthew is eating like a champ and had shortened his time each feeding. The prayers and positive thoughts worked! I look forward to the NG tube coming out!

The new development today is that Matthew’s eye has gooped up. We are hopeful it is just a clogged tear duct, but they cultured it in case of infection. More to come on this new development.

Today was quiet but nice. After a visit this morning from a dear friend and Darren’s brother (Bryan), Darren headed home to spend the afternoon and evening with Alyssa and Jackson. It will do them good to spend time with Daddy! This afternoon, Matthew and I had more wonderful visits from another dear friend and friends from church. It was so nice to see friendly faces! Thank you Bonnie, Bryan, Kirsten, Ed and Pam!

Through the last week, we’ve been asked countless times “what can I/we do to help?” I understand the feeling of just wanting to help, of wanting to offer support. Last fall, we lost our cousin and friend, Jenn, after her courageous battle with ovarian cancer. I remember wanting to just do anything, anything at all to support her and her family. Keeping that in mind, what we need most is your prayers and positive thoughts for Matthew, for his doctors and care team, and for our resolve. Our basic needs are being cared for as our dear friend, Kirsten, is thankfully coordinating our meals (kirsten_randolph@yahoo.com). Our new charity of choice is the Ronald McDonald House, I can’t imagine what this week would have been like without RMH. You can visit their website at http://www.rmhhouston.org/?id=1 to make a donation or find out what is on their ‘wish list’.

Finally, speaking of Jenn, it is probably not theologically correct, but even before Matthew was born, I could picture his Aunt Jenn holding his soul before he was born. So much so, I told her that she needed to let him go so he could be born. A day later, he was here. I miss her and today, I am thankful for our special angels looking over us from heaven.

Matthew Aaron-Sunday, March 7- Morning

The morning report: (I wish I could do it in song as Zazu does in the Lion King, but I promise no one would want to hear that!)

Today (3/7) is Matthew’s due date and (if I remember correctly) the birthday of his Godfather. Happy Birthday to Gary Renn!

From our last update through Matthew’s last feeding, he only had to take 15ccs via the NG tube. He’s getting the hang of sucking, swallowing and breathing. Now he just needs to get more proficient at it, as it takes him a LONG time to get through 2 ozs.

The Sunday physician came by to check him out. At least that’s who I think it was, as he didn’t introduce himself and I’ve never met him before. Matthew has lost a little weight the last 2 days. The thinking is that it takes Matthew a lot of energy to take his bottle. So, they are upping his intake to 65ccs. Goodness, it was taking 30-45mins to get through the 60ccs, and now we’ll have to get more down him. We could continue to use the positive thoughts and prayers at his feeding times… 12:00, 3:00, 6:00, 9:00 both am and pm.

We are still waiting on renal. Come Monday am, I’m going to find their number and start calling them every hour on the hour.

Our laundry list of questions and issues has evolved, but doesn’t seem to be getting shorter over this weekend, making us a little concerned that we’ll be here past Monday. We want to stay as long as we need to, but are definitely anxious to get home with baby Matthew.

Thank you for your continued positive thoughts, prayers and notes. In the quiet of the night (or day), we re-read the kind words and are reenergized by them. Thank you!

Matthew Aaron-Saturday March 6-Evening

As expected, it has been a pretty uneventful day here at TCH though we’ve had a lot of reason to celebrate. Matthew has taken and finished all of his feedings via bottle. No NG tube feedings! One huge step home.

We had a visit from physical therapy. No concerns, but they gave us exercises to help him develop the right muscles at the right time. Matthew will be hitting the gym once or twice a day to help him be buff by summer.

We are still waiting on a visit from renal. I feel like I’ve gotten stood up for a date. When do you finally give up and realize that they aren’t coming? I’m an optimist so we continue to wait and hope they’ll come.

Finally, I heard something through the grapevine that I wanted to address here on the blog. Someone we know insinuated that we shouldn’t have had home birth. I believe everyone is entitled to his/her opinion about what is best for their birth. I don’t believe home births are for everyone, but in our case, and in this instance, it was perfect for us. I've had 2 previous all natural births. I had outstanding prenatal care by a professional midwife. I had a consultation and ultrasound by an OB. I had an uneventful and healthy pregnancy. Where or how I gave birth has nothing to do with Matthew’s uniqueness. He would be unique if I had given birth at home, at a hospital or in a field. These ‘Matthew specific attributes’ occurred when he was 7-8 weeks in my womb. Thankfully, they were revealed to us as we needed to know, when we could do something about them, and not a moment sooner. Matthew was created by us and God, perfect for us.