Autumn and Noah meet

Today I write from the bedside of my sleeping baby boy. Maria has advised me to hold him as much as possible, but he’s sleeping so peacefully…

It is 45 minutes later and Noah is again resting in his new crib. His big, beautiful eyes are fighting to stay open to continuously survey everything around him. Every time his eyelids start to sink, the slightest noise will trigger his curious eyes back into observation mode. Then his eyes get lazy and focus is lost as his heavy eyelids slide back over the eyes until the next distraction stirs him.

Earlier, while Noah was awake and agitated, I held him and learned a trick to help soothe him. I watched Noah’s nurse push his hollow, rubber pacifier into his mouth and wiggle it around until he took it and continued to wiggle it. I was hesitant to force his pacifier into his mouth after making him gag last weekend by doing the same thing. Nonetheless, I stuck that pacifier deep in his mouth, moved it side to side and, low and behold, Noah stopped crying and started sucking away. Being able to calm my fussy baby is one of my proudest accomplishments. After a month and a half of feeling helpless in being able to care for my son, I finally felt like I might be a good dad after all.

We had another family victory later on today as a result of our social worker pushing the powers that be to allow Autumn a chance to visit with her brother. After eating lunch in the PICU waiting room, Maria and I took Autumn back to meet her brother for the first time. It was wonderful having the whole family together at last. It only lasted for about ten minutes, but we took a whole memory card full of pictures to memorialize the moments. I’ll share some precious pictures once I get them off the camera.

My Little Big Girl

Since this blog is called tim and maria brooks and family, I feel that I should spend more energy writing about Autumn. Don’t think that because we have been worrying a lot about Noah, we’ve forgotten about Autumn. Autumn does at least one thing every day that amazes me. Her mother and I are so proud of her.

I’m sure that almost every parent feels that their child is smart. Indeed, we are all smart if you think of all that we have had to learn to survive. Maria and I are astonished, though, at how much Autumn knows and how quickly she picks up on things. Sure, Autumn knows the alphabet song and she can count to 15, but it’s the things that she understands - that we don’t expect her to understand – that makes us think that she is so bright. For instance, with little explanation, Autumn seems to understand that Noah is her brother because he has the same parents as her, she seems to understand that Noah’s at the hospital because he is sick, and she seems to understand that Noah needs his mother. All those things we thought Autumn might have trouble dealing with. Autumn also knows that she needs her mother, too, and she has laid that one on Maria already.

There are also things that Autumn has learned that we are just not ready for. Most of these things involve Autumn figuring how to climb to new heights – literally. For example, she has figured out how to climb to the top of the four foot wooden fence we have enclosing our back yard. Really, was I that daring a two year old to try climbing straight up a crack between two boards to a height twice as tall as me? Then there are those words and phrases that you’ve only got to slip up and say once and she is repeating them with pride in all settings.

So, here’s to you, Autumn, our little smarty-pants. We love you.

Tim (Daddy)

March 28, 2007 Update

Noah had another splendid day. His nurse reported that he is breathing room air now, so that only leaves the feeding tube in his nose. He also got his first taste of breast milk today. He has been getting it all along through his feeding tube, but today they gave him a little using a syringe. We were told that he seemed like he didn’t know what to do with it. Maria told me that she is now hearing that Noah’s surgeon, Dr. Jaggers, now thinks that Noah can make it to his next surgery with his heart. Either way, we’ll be at the hospital for a while. We’ll endure whatever it takes to help Noah live a long, happy life.

I’ve enjoyed having Maria home today. I mowed my yard and put down fertilizer then did a lot of cleaning inside. It was a great day to be off. Maria took Autumn to get a haircut and I tried to take a picture of her while we were eating outside this afternoon but she had food hanging out of her mouth in each picture. I’ll get a good one and post it. Until then, enjoy this picture of the Maria, Autumn, and I taken at the Duke Gardens this past weekend.

March 27, 2007 Update

For the last few days, Noah has been steadily getting bigger and stronger. I think that is the plan until the doctors decide they want to try backing him off his medicines again. He’s just been hanging out with the girls in the back room of the PICU. There are three other beds back there and I think that all his roommates have been girls so far. I think it’s because he’s so mellow and the girls who have come and gone have been so needy. We like him being back there because he is not up front with the critical care patients. The one thing that we don’t like about being in the back room is that there is no partition between the side of the room Noah is on and the NICU, where the premies are. Because of that, Autumn will not get to go back to see Noah in person.

Autumn did get a chance to see Noah through a window, though. It was awesome because Autumn always tries to run back into the PICU when the automatic doors swing open and she finally made it. At the window, Maria held Autumn up on her shoulder and Autumn waved to Noah who was being held by my mother. Autumn said, "Hi Noah!" and, I love you, Noah." and Noah threw up his hands as if he were waving back. Autumn also blew her little brother a kiss and that was the sweetest thing.

Today, we’re starting our new schedule where Maria comes home Tuesday afternoons and returns to the hospital on Thursday. It’s going to be nice having her home and I’m taking tomorrow off so that we can team up and get some things done around the house. I haven’t dusted, vacuumed, swept, or mopped anything in a month and a half!

The Ronald McDonald House

We’ve been staying at the Ronald McDonald House of Durham for six weeks today. When I checked in just a few hours before Noah’s birth, I agreed that we would give a $10/day donation if we could afford to. It costs the Ronald McDonald House of Durham approximately $52/day to furnish that room to us. If we can’t afford to pay the $10/day when we check out, Maria and I will continue to donate to the Ronald McDonald House as we can over time. In fact, I’ve been giving the Ronald McDonald House Charities of North Carolina $10 out of each of my pay checks through the Combined Federal Campaign for three years. It was three years ago that my sister and brother-in-law were fortunate enough to be able to stay at the Ronald McDonald House in Greenville, NC, while their premature baby girl grew in the hospital. So, my family has been twice blessed with being able to stay at a Ronald McDonald House.

I can talk all day about what a wonderful charity the Ronald McDonald House is. Providing a room to families of children staying in the hospital is their mission, but it goes way beyond that. Almost every day, guests of the Ronald McDonald House eat meals provided by different individuals and community organizations who want to help out. There are individuals and groups that come in to keep the house clean and comfortable. There are others who come in to do activities with the kids. The best thing about the House, though, is the bonds that are created there. We have grown close to many of the other guests, with which we have little in common. We all do have something in common, though, and that is the catalyst to making friends. The House then provides an environment which family-like kinships can grow in.

Here are a few interesting statistics about the Ronald McDonald House of Durham from the time they opened their doors in 1980 through 2005:

31,000 families have stayed there;

Those families were from every county in NC, 43 states, and 19 foreign countries;

The average stay was 11 days and the mean stay since the transplant suites opened was seven weeks;

The longest stay was 18.5 months;

The family traveling farthest to stay there was from Novosibirsk, Russia;

The average occupancy rate was 97.5%!!!

The House has 18 guest rooms and five transplant suites, but a new Ronald McDonald House of Durham is being constructed which will more than double the number of rooms.

The next time you’re looking for a charity to give to, please consider the Ronald McDonald House.

March 25, 2007 Update

I failed to mention in yesterday’s post that Noah is being put in his swing by his fabulous nurses quite frequently and he seems to enjoy it. Both Friday and Saturday night when I went to visit him, he was sitting calmly in the swing. It is good to see him anywhere outside the hospital basinet. Some of his nurses, and even last night’s resident, have told me that Noah is a favorite amongst the nurses to hold. It makes us fell good that the nurses hold him, especially during the night when we’re asleep in our beds.

Last night, the resident explained to me why they are taking x-rays of Noah’s mid-section every six hours. Because Noah has had a trace of blood in his stool, they want to make sure that he doesn’t have something that they refer to as nec – short for necro-something-something-something. It is a fast attacker of the bowels causing them to shut down when it is at its worst, I think. The resident said that if Noah had it, they would be able to stop his feeds and treat it with antibiotics. The resident implied that she didn’t feel that Noah had nec, but it was just a precaution they were investigating especially because hypoplastic left heart syndrome patients are at higher risk of getting it.

Maria tells me that Noah is doing fine today. He has both sets of grandparents coming to visit today. The big event scheduled for today is getting Autumn in to see him. She’ll have to see him through the glass, but at least she’ll know he’s there. Another cool thing is that Maria’s parents should be able to hold him for the first time today.

The Little Things

It was all I could do to keep from laughing aloud as my two-year-old daughter Autumn laid upon my arm crying, unwilling to give herself up to the nap she so desperately needed. I knew where the laughter was coming from, but still bit my free hand to keep the laughter in. I did not want Autumn to think I was making fun of her. Yesterday, the tantrum that my tired daughter was now throwing would have made me wish that her mother was dealing with it far away from me, but today I cherished the annoying cry – that amused me.

Last night I heard Noah cry for the first time in over a month. Sure, it was I that made him cry and that saddens me. I tried to sneak his pacifier in his mouth at the end of a yawn, which caused him to gag, spit up a little, and let out a short cry - but that is not the point. Hearing him cry just made my day, even more than seeing and holding him. For this meant that his vocal chords might not be paralyzed. It is not uncommon for infants who've been on a ventilator for a length of time to come off with paralyzed vocal chords. Since Noah's surgery, his face has made the expressions that would seem to indicate that he was upset but he has never made much noise, which was starting to scare his mother and me. For now, at least, we've been given a little hope.

Sometimes the little things give us the hope and strength we need to keep us from going crazy when facing a possibly lengthy stay in the hospital. Most people wouldn't think much of a baby sucking on a pacifier. To Maria and me, though, that means that Noah hasn't lost the instinct to suck after having nutritive drips and breast milk pumped directly into his intestines since he has been born. Or, how about the first time he pulled his feeding tube out? We finally saw him as a kid being a kid. Or, how about the first time I saw him open his eyes after coming off the sedatives? I could write a whole heartwarming novel about that!

Speaking of little things making big impacts, Noah's neighbor, a seven-month-old girl, was taken outside today for the first time in her life. A simple stroller ride out the door must have given her parents and big sister a lot of hope and strength. So, here's to Erika - You go girl!

Love to all,
Tim

March 23, 2007 Update

Not much happening at the hospital today other than Maria getting to dress up the little guy in some new clothes. He's got an Easter rattle on his wrist, his cars and trucks shirt on, and some blue socks. His loving mother tells me that they've had to play around with his oxygen, but that's nothing new. Some of the results from the tests they've taken to see if Noah is a good heart transplant candidate have come back and they show a presence of antibodies for the Chicken Pox and Hepatitis C viruses. I don't know what that means for the little guy, but Maria said they didn't seem too concerned. She said they were going to take a little more blood to further investigate. Autumn and I will be traveling to stay with Maria at the Ronald McDonald House tonight. Maybe we'll get to put him in the swing Maria brought to the hospital last night? Or maybe Autumn will get to see him for the first time? I wonder what she'd think of that?

The Big Bump

North Vine Street was a small dead-end road that the town of Winchendon, MA did not want to claim, it seems. When all the other roads in town were constantly having to be paved and patched because of the harsh, frosty winters, North Vine Street was never given much attention. For many years, my family dodged the bumps and straddled the pot holes of North Vine Street on our frequent trips to my grandparents house. There is one particular bump on North Vine Street that I will never forget. It was the biggest mound of buckling asphalt on the street and it was directly in front of my grandparents driveway. The big bump was certainly in need of repair, but no one really considered it a nuisance. The grandchildren, in fact, grew to love it because they could launch bicycles off it when showing off their daring jumps. I don’t recall, but it may have been used in other ways, too. The fact is that we learned to live with the big bump and even got something out of it.

Tuesday morning, my wife started getting the news that the best treatment for our five week old baby Noah might be a heart transplant. It was devastating to her and she called me for support. I, being at work at least an hour away from her, was also crushed by the news. My brother-in-law best described the feeling when he called me later that evening. He’s a Marine who spent three months in the hospital with his daughter when she was born three months premature, so he’s got an idea of how it feels when you get that kind of news. He said it’s like a solid sucker-punch to the abdomen, one that comes out of nowhere, stuns you, hurts you and takes your breath away. We chatted about when there is nothing but improvements in your baby’s health for a few days and you, the parents, are on cloud nine. Then one night you go to bed and wake up the next morning and wham, there’s that sucker punch that knocks out all your hope. My brother-in-law encouraged me to keep up my hope, though, because it will get better.

I have started seeing the positives again. I have to find hope and I have to help my wife find hope or we’ll go crazy. On a walk from the Ronald McDonald House to the hospital yesterday I saw one of the helicopters land on the hospital, which really pushed me to count my blessings. The number one thing I’m thankful for throughout this whole ordeal is that we’ve got Noah. My wife and I have really grown to love our son and we’re thankful for having been given the chance to know him. I think that if you held him, you would fall in love with him too. He’s perfect.

Having seen the helicopter land on the hospital caused me to be thankful that things aren’t that bad. At least, our troubles are probably not as bad as the patient that may have had to be airlifted to the hospital. I’m also thankful that Noah’s condition is treatable with a couple of different options of treatment. I’m thankful that there’s an institution close by that treats Noah’s condition and that there’s a Ronald McDonald House that families like our’s can stay at when they have children in the hospital. Finally, I’m thankful to have family and friends and even strangers who have reached out to us. For everyone who has reached out to us, from grandparents who drop everything to take care of our two year-old daughter when we call on them to my coworker in Iraq who sent me a short email offering encouragement, my wife and I are so very appreciative.

As with the big bump on North Vine Street, my family will learn to live with our own bump in the road with all our blessings. I hope that one day, we’ll realize that we’ve even utilized Noah’s heart for something great.

Love to all, Tim