Swallow test

I think that the final challenge for Noah to pass before we can bring him home is getting him to take his feeds orally. Therapists have been working with him on sucking for a maybe two weeks now. They only try once a day, though, to get him to take a bottle. Today Noah had a "swallow test", a test where they feed him something with a dye in it then watch where it goes. There is a grading scale in which the score of one is the safest and the score of eight is the most dangerous. Noah scored a three because he has some of the fluid he is swallowing going into his lungs. As he sucks, the fluid is forced back out, so it’s not staying in the lungs. What this means, my wife says, is that we will have to thicken his breast milk/formula when we bring him home.

Uncle Chris and Cousin Ellen's Visit

Papa, Gramma, Ellen and Autumn at the Durham Bulls game.

Chris and I carrying the girls to the game.

Ellen and Autumn pose with Wool E. Bull.
Ellen and Autumn enjoying the playroom at the Ronald McDonald House.

Smile

It seems that Noah is enjoying more Mommy-time in step-down.

Step-Down Bound, Again

I just received the following text message from Maria, "We r n step down!"

May 29, 2007 Noah Update

Supposedly, Noah will be going to step-down today. I know, we've heard that one before. I will believe it when he's there. Noah had his biopsy and ultrasounds yesterday and his cardiologist told me that everything is progressing slowly, but progressing nonetheless. His heart still isn't relaxing after it pumps like it should but it is slightly better now than last time, as is his breathing. At this time I still haven't heard what his current rejection level is.

I waited to see Noah after his biopsy yesterday and expected him to be sedated and on the ventilator. I was told by another PICU dad that there were a lot of people standing around his crib when he left and that made me even more nervous. When I went back to see him, I was surprised that he was awake, alert, and moving around with no supplemental oxygen. He appeared no different than when I had left him the night before.

Today I pray that baby Jacob's health improves. Jacob is only about a week old and he's been through so much already. He is going to have a long, hard road to recovery ahead of him if he makes it through the next couple of days. I also pray that his family gets the strength they need to pull them through.

Yesterday, Memorial Day, we went to a Durham Bulls baseball game and had a blast. I will post some pictures tomorrow. Until then, please enjoy Autumn's daycare below.

What We Do Do

My family has been given so much. Last year when we found out that our son would enter into the world with essentially half a heart, we were, well, disheartened. We didn’t know how we would survive the estimated month-long stay in the hospital. It is now more than three and a half months since we checked into the hospital and still we are waiting to bring Noah home. The time has been long, but bearable. It has been bearable mainly because of the support we have received from family, friends, and strangers.

My wife and I wish to someday be able to give back to society at least what has been given to us. We would like to be able to volunteer our time and talents to the Ronald McDonald House and to a fund raising campaign for Duke Children’s. We would like to team up with a children’s heart association and an organ transplant support group to provide support for families of children with heart defects and to encourage organ donation. There are many grand things that Maria and I would like to do when our own family doesn’t need us as much.

In the meantime, we have been enjoying being able to give back on a smaller scale. One way that we’ve been able to do so that doesn’t require much time and energy from us is by offering support, and hopefully comfort, to the new families that come to the Ronald McDonald House. One can easily distinguish the new families from the families that have spent time at the house. The new families look lost, worried and uncomfortable, and usually eat their dinner at a table by themselves, rarely opening their mouths other than to take a bite.

When Maria and I notice them, usually at a dinner provided to house guests, we allow them to finish eating then go introduce ourselves. We exchange names then ask if they have a child in the hospital. To that, they usually open up and share their story. Then we use Noah’s story to offer them encouragement. I can’t yet consider Noah’s story a success story, not until we bring him home anyway, but it is filled with good fortune and blessings. Finally, we encourage the new family to ask if they have any questions and tell them that it’s OK if they forget our names and have to ask again.

Having once been the new family, I can tell you that it’s a scary situation to have to be away from home because your child has to be in the hospital, even if you’ve had months to prepare for it. But to have a network of supporters makes a huge difference. Since Maria and I have learned that we can be someone else’s supporters, it has made our time in the hospital that much more positive. It’s a small way of giving back but it feels great when you see the faces of the new families turn from concern to smiles when we talk to them.

May 27, 2007 Noah Update

Despite what I said in my last post, we are still in the PICU. It turns out that Noah has another biopsy scheduled for tomorrow and they’re just letting him stay in the PICU since he’ll have to re-intubated, or put back on the ventilator, there. Noah has been doing well, except that he gets real worked up when he gets angry. He holds his breath, turns beet-red, then his eyes go crazy, pupils dilate, and he spaces out as if he were passing out. Then he comes around and is fine again. They are checking to see if him anti-rejection medicine might be the cause of it. He had a good visit with his uncle Chris and his cousin Ellen, who came down from Massachusetts to meet him and Ellen’s other cousins, Autumn, Alexa and Clara. Autumn and Ellen played well together and I wish we lived closer.

Moving on, again.

Early reports today indicated that one of Noah's doctors ordered that he stay in the PICU to be monitored for a little while longer. When I heard this, I had mixed emotions. There’s a familiar schedule we follow while Noah’s in the good hands of the PICU nurses. We’re more comfortable and we can stay at the Ronald McDonald House while we’re in the PICU, but on the other hand, we want to get home. Maria then assured me that we could eventually go straight home from the PICU which made my worries dissipate.

Then, a few moments ago, Maria called and gave me the news in a flat, dull tone that Noah was going to be moved to step-down today. She was obviously slightly bothered by this decision, and I selfishly hoped that it wouldn’t ruin my weekend plans. But now I’m seeing it as a clear sign that we are on the road home. Noah has been blessed with good health for the last couple of weeks now, and I think that his feeding is one of the issues keeping him from leaving the hospital. I believe that the therapists will be able to work more aggressively with him on his feeding when he is in step-down.

Have a good Memorial Day weekend!

Maria sent the following message to some of her friends and coworkers:

Well everything here is going pretty good right now. Noah is doing well and he took his first bottle Monday morning. He smacked his lips and cried for more. I really feel that feeding will not be this kids problem. I don't want to get too happy, but I feel in my heart that we are coming home early next month. He is still in the PICU but that doesn't bother me because he really could be in step down but I let everyone know how crappy step down really is. I think they have the room in the PICU and they can afford to move slowly with him. I am happy because little man gets so much love in there. He is 3 months old and he already has women fighting over him. They hold him every chance they get and some nurses actually take their breaks and come spend it with Noah. You can't get that kind of love in step down. Yes, I will take PICU care any day over step down. Anyway Noah is picking up weight and his vocal cords are still weak but I can hear his cry really well now. Keep praying and I know that these last few days of school will move along very quickly. Enjoy your Memorial Day weekend!

Drinking again

Maria told me that Noah drank a whole ounce of thickened breastmilk yesterday morning then passed out. Everything else I've heard from that front lately has been good news. Maria hopes to come home today but she says she's been hearing the step-down rumor, so we'll see.

One thing is for sure, and that is that Naoh has definitely been getting smarter and smarter since being at Duke. It must be the academic environment. In the picture below, you'll see that Autumn feels that it's necesary for her brother to not only be smart, but to also look smart.

Star-studded weekend

We had a great weekend in Durham. All the grandparents came to visit. Noah's heart was racing while my parents were visiting him on Saturday, but it calmed down Saturday night. He has also been losing weight over the last week, so his caretakers are trying to figure out why. His feeds were increased last week, so he really should be gaining weight. I think he had lost like half a pound over four days. Noah was tested for overactive thyroid today, which could be causing him to burn more calories, but that came back negative.

Autumn, I think, had a great time this weekend. She got to see and play with her friends Easton and Jacob. And Maria, as always, enjoyed having company.

We got to meet Jeff Foxworthy as he toured the Children's Hospital with his wife and kids. I guess they go around to meet the kids and their families at Duke (and possibly other hospitals) every year. Foxworthy said that he's been doing it for eleven years and he loves seeing the older kids that come up and ask him if he remembers visiting them in the hospital years ago. He seemed like a really swell guy and I was impressed that he remembered Noah's name when we saw him leaving the PICU quite some time after he left Noah's room. As we talked to him in the hallway, I was holding Autumn and noticed that she was picking her nose. I removed her finger and she put it right back. I then just said something about how proud we were of her. I also saw some country music singer, but I didn't know who he was and I don't remember his name - sorry!

Papa and Gramma Garcia with Noah and Foxworthy.

Maria's brother Adam with Foxworhty.

The Brooks Gang (minus Noah) with Foxworthy.

A glimpse of Noah in prayer

...and God bless Mommy, and God bless Autumn...

We've got a drinker

Maria just sent me this picture with a note indincating that our little guy is tired because Noah just *orally* consumed 7 ml of breastmilk and he was very interested in it. That's the first big taste of it he's gotten. I just can't help but think that we're homeward bound now.

Two pictures taken on Mother's Day

Autumn playing in the play room at the Ronald McDonald House. Her nose got scraped when she fell into a trash can. Luckily, we were at the hospital when it happened and one of the PICU nurses cleaned it up for her.

Here is my bundled baby boy looking up at his father. I got to spend a lot of quality time holding Noah this weekend.

May 16, 2007 Brooks Family Update

Noah is having a good day, though his skin is slightly modeled and he’s been breathing a little fast. For those reasons, I think they are going to keep him in the PICU for a little while longer for observation. That suits Maria fine, as she has told everyone at the hospital that she wants Noah to be healthy before he is moved to step-down. You can’t blame her for being nervous about Noah leaving the PICU after what happened when he was moved out before. The only reservations I have about keeping Noah in the PICU is that it seems that the therapists are more aggressive in step-down and Noah needs to learn how to eat before he can go home. Then again, I’m not there everyday and Maria tells me that the therapists are working with him in the PICU. She said, though, that no orders have been written to try oral feedings yet.

While Noah is still in the PICU, Autumn and I have been enjoying having Maria home for probably that last time for a couple weeks. We all did some shopping last night and Maria is picking Autumn up early today to take her to get some new shoes. Autumn plays so hard that her little sandals are falling apart. Maria picked up lunch for her and I and we ate at the Arboretum. It was beautiful and I don’t think we’ve been back there since the visit we made on the day we got engaged.

A few days worth of stuff

All kinds of things worthy of note have been happening lately. I’ll start with Noah news. Noah is doing great. I got to hear him cry today for the first time since April 3. His weak cry was so precious. Maria sent me the attached picture of Noah crying with the audio of him crying. Maria says that she expects that they’ll move Noah out of the PICU tomorrow.

Autumn and I stayed home yesterday because she had an ear infection. We went to the doctor to get some more drops for her ear, which I get the privilege of putting in twice a day - I might as well be pulling her teeth out! Today she seems to be feeling much better. Anyway, it was nice staying home with her yesterday and getting an afternoon nap.

Maria seems to be doing good. I think she had an enjoyable and relaxing Mother’s Day. Autumn and I picked up breakfast for her from Elmo’s Diner then we gave her some gifts. She liked what her kids gave her and the Ronald McDonald House had a hair stylist come in to give the mothers free hair cuts. Then we had a delicious meal made by one of the house guests.

Speaking of dinner at the Ronald McDonald House, a classmate of mine from high school volunteered to provide dinner to the house Saturday night. I was quite surprised to see her and very thankful for what she and her family prepared for the house guests.

According to Joy, my neighbor at work, today is National Chocolate Chip Cookie Day. Please enjoy responsibly.

My good buddy, Travis, and his wife are on the road to their new home in Washington, DC. I just met them as they drove through Greensboro so they could turn over custody of our beer brewing kit to me. I’m going to miss them. Then again, if I’m able to go visit them now, it will be all that much cooler in DC.

A little boy whose family we’ve come to know through our numerous situational commonalities is having open-heart surgery soon. Please pray for baby Weston and his family as they go through this tough time. I read on their Caring Bridge site that if Weston’s surgery isn’t successful, he will need to be put on the heart transplant list. Weston is the little brother of Easton who is pictured with Autumn on an earlier post.

Also, please drive safely. I passed an accident on my way to work this morning in which a small car had run into the back of a big flatbed truck. The car I think is the one that I see flying by me almost every morning. I’ve often thought that that guy is going to get a ticket one day. Well, today I think he suffered worse consequences than getting a ticket. As I’ve heard my mother say countless times, "It’s better to be safe than sorry."

Mother's Day

God bless all mothers on this Mother's Day and everyday, especially those as dedicated as my wife.

Big eyes

The breathing tube that was supplying Noah with a low dose of supplemntal oxygen was removed. He has also been taken off the Milrinone (the heart medicine that keeps him in the PICU). A couple of his nurses said that he is discovering his hands and reaching out for his mobile. It's fascinating to watch kids discover the things we take for granted. Noah opens his eyes so wide that it seems like he's always spellbound to discover everything around him.

It makes me recall a time when Noah wasn't doing good and his eyes didn't open as wide. His sad eyelids would only slit open and his eyes would roll down showing his brown irises looking out. He'd see you there and that is all he needed. The eyes would roll back up and the eyelids would sink back over them.

His eyes have been big and full of wonder for a while now, thank God. I just can't wait to get him out to see the rest of the world. I know he's going to love it.

Three months

Today marks the three month anniversary of our relationship with Duke University Hospital. It was three months ago today that we checked into the birthing section to have Maria induced into labor. At that time we were preparing for a one month stay to be followed by home monitoring and frequent follow-up visits at the Children’s Health Center attached to the hospital. Then, at about this time, we expected to be going back to the hospital for the second surgery. As you know, that all changed. Man, I’m glad we don’t have to go back to the hospital for that second surgery.

A few weeks ago, we again thought that we’d be home by now. I can remember thinking that it would be a splendid gift for Maria to be home with the whole family on Mother’s Day. Then, another setback. Although Noah is doing just fine again, we have no idea when he’ll be home. And that is the answer to the question I’m asked most - when will he be able to go home. I just don’t know and don’t want to jinx it by speculating again. As Maria told me last weekend when I phoned her from Noah’s bedside to give her a great update, "I’m not going to get too excited until Noah is strapped into the car to go home."

I don’t mean to seem bothered by people asking when will Noah be able to come home, because it has never bothered me when people ask about my family. If you ask ,then that means you’re thinking about us and I greatly appreciate that. I always love to talk about my family, too; that’s my favorite subject. I just don’t want to cast any bad luck on us by suggesting that we’ll be home in a certain amount of time. I know, also, that luck is a debatable force, but I’m going to try to keep it on my good side.

Phone camera pictures from today

May 9, 2007 Noah Update

Noah has getting better over the last couple days. Yesterday he had to go to the OR so the doctors could clean up his scar, which is not healing properly in one spot. He was taken to the OR just in case they needed to do anything else. Fortunately, they determined that there was no infection and just cleaned it up and sent him back to the PICU. Right before going to the OR, Noah finally managed to pull out his ventilator tube. So, they had to re-intubate him for a day. They removed the ventilator last night. Maria said that Noah didn’t sleep very well last night, probably because he was drug-free. Well, you know, not entirely drug-free. Maria said he is doing good today and she was holding him when I last spoke with her. She is coming home this evening so we can take Autumn to the GYC Carnival if it doesn’t rain.

A good weekend

The Brooks family had a great weekend. The picture above was taken at the Volunteer Appreciation Cook Out at the Ronald McDonald House. Noah made excellent progress over the weekend and it seemed that we got nothing but good news. The rejection results came back from the cath lab. Again, Noah has grade zero rejection, which is great. He is still on the ventilator, which I know he dislikes, but it will hopefully be coming out today. His nurse yesterday suggested that I hold him to try to calm him down when he was particularly fussy rather than giving him drugs. I agreed, so she and a respiratory therapist got him into my arms and Noah quieted almost immediately. I spent over an hour sitting in a recliner with my sleeping son in one hand and a remote in the other flipping between hockey and baseball on a Sunday afternoon! Could life get any better...

Cinco de mayo, 2007 Noah Update

Noah looks much better today than he did when I visited him yesterday afternoon. Yesterday he was quite swollen and on a sedation medication that made him drool like crazy. He’s not as puffy today and he isn’t drooling. Today’s goal is to get Noah to urinate like crazy. Noah’s nurse said that Noah is exceeding her expectations in reaching the goal so far. He’s also more active and alert today. It was hard to tell how alert he was yesterday because his eyelids were nearly swollen shut.

Autumn, Maria, and I are getting along well at the Ronald McDonald House. The Ronald McDonald House had their annual volunteer appreciation pig picking today. There were a lot of great people here for the event. I didn’t know that the house volunteers log in 95% of the work hours. I know that my family truly appreciates them. Below is a picture of Autumn in the tub before I ruined her life by washing her hair.

May 4, 2007 Noah Update

Noah went for his heart cath yesterday. While he was sedated, they did also did an ultrasound. The cardiologist who spoke with Maria yesterday after the procedure thinks that Noah’s heart is a little too big and muscular. It may have been a little large when it went in. Now, though, it’s muscles have gotten tougher due in part to the steroids given as part of the anti-rejection treatment. So the heart is real good at contracting, but not so efficient when it comes to relaxing after contracting. This, the cardiologist thinks, is the source of the recent problems in maintaining Noah’s health. Unfortunately, the only medicine to treat this is time. We are just hoping that it’s not too much time and that the majority of the time won’t be spent in step-down where Maria is unable to leave Noah. At least this weekend we’ll have a room back at the Ronald McDonald House.

Congratulations to my sister and her family on the birth of baby Clara Ann Gaines today. The baby weighed six pounds and eleven ounces and that's all I konw about her right now.

May 3, 2007 Noah Update

Noah is going in for another heart biopsy/catheterization (cath) today. It was originally scheduled for next Monday, but the doctors want to put another Broviac line in. I guess he’s doing all right, but his heart is still doing some funky stuff. There’s a lot of speculation as to what is wrong, but no one is sure. Maria said that the biopsy might be able to rule some things out. I’m just glad that the heart cath could be rescheduled to today because I know Noah doesn’t like being on the ventilator and they planned to keep him on the ventilator until he went to the cath lab. The poor little guy has to have his hands tied down to keep him from pulling the ventilator tube out.

Miracle Baby

I like to think of Noah as a miracle baby. I’m always wanting to talk to people about my miracle baby and wanting to share his story. When times get rough and tough for Noah, though, I’m reminded that we are all miracle babies. It’s usually the smallest abnormality that causes a chain reaction of events that sets us back as is what happened earlier this week.

I came to realize that we are all miracle babies while studying biochemistry and human physiology in college. There are just so many pieces to a living puzzle and they all have to interact with each other almost perfectly. The pieces can be as small as singles atoms and as large as the skin that almost covers our entire body and most of the pieces are critical to the whole puzzle.

As the doctors, nurse practitioners, nurses, and other medical professionals explained to us what was going on in Noah’s little body yesterday, my mind struggled to connect all the pieces. I wanted to understand all of it, but it was too much. Each person that explained their thoughts about what may have gone wrong added more pieces to the puzzle. Although each person did a great job of explaining things, I still got confused. The one thing I was sure of when we left the hospital is that it’s a miracle that any of us are alive. Thank the Lord.

Another step back

Things got worse for Noah before getting any better again today. It seems to us that weeks of progress were simply erased in a single day. Once he was moved back to the PICU, they determined that the only IV line left in Noah was in need of replacement. When I last spoke with Maria they had put a line back in his head and were working on putting another one in. They also put him back on the dreaded ventilator. Maria was told, though, that at least he seemed to respond well to the ventilator as his color has come back. I feel weird thinking that I’m glad Noah’s back in the PICU and that we’re probably too scared to bring him home now anyway. Maybe they’ll be able to pinpoint what went wrong so we won’t have to continuously worry about it happening again if he does get to come home someday.

Three steps forward, two steps back

Noah is doing OK now, but I hear he had a rough morning. For one, he lost the IV line that was put in during surgery and supposed to stay in long term, the Broviac line. It was the line they used to draw blood from him so that they don’t need to pick him each time they needed a sample. Secondly, he has been breathing heavily because of fluid on the lungs and he’s sweaty again. There might be other symptoms also that I’m not sure of right now. Maria said that a cardiologist told her that the symptoms may be signs of (1) Noah taking in more fluid than he’s releasing, or (2) infection, or (3) heart failure. They think it’s the fluid issue which sounds better to me, or least more easily treatable, than the others. Because Noah needs to be more closely monitored, they’ve moved him back into the PICU. Also, they’ve had to reschedule his swallow test that will determine how well he is able to tolerate oral feedings. A little bit of good to come out of all this is that we’re getting a room at the Ronald McDonald House and Maria will be able to get some much needed sleep there knowing that the PICU nurses will be with Noah all the time.

Please pray that all goes well for Noah and his mother. Also, I ask that you pray for my sister and her family as they prepare to introduce my new niece Clara Ann into the world tomorrow. And then I ask that you pray for another Duke PICU baby named PJ and his family as PJ gets ready for a tricky surgery. Thanks - I know I’m asking for more than I should and that I’m straddling the line between normal and holy warrior, but I really feel that these people could use your thoughts and prayers.