Holden's 1st Birthday & Valentine's Day

February 14, 2009

Dearest Holden,

Happy 1st Birthday Monkey! It has been an incredible first year for you - filled with challenges, excitement, but most importantly...love. And despite all the obstacles you faced, here you are celebrating your first birthday! I don't think there are words to fully express how proud I am of you for persevering and fighting your way through your health problems. I would do anything to take away the pain you've had to endure.

Never did I imagine how much I would learn from you. You've taught me to appreciate today and look "forward" to tomorrow. You've reminded me not to sweat the small stuff and that it's the simple things in life that truly matter. But most importantly you've made me realize how deeply we are capable of loving one another - unconditionally. I know I've changed so much in the past year. And I like to think I'm a much better person because of you!

Someone recently told me that babies choose their parents. I don't pretend to know how that works. Whether it was God -or you -or if the two of you decided together, it doesn't matter. I just know that we are so blessed to have you as our son. And as we look forward to the future - I can't wait to teach you everything I can and introduce you to the exciting world that awaits you!

We will continue to pray every day for our miracle, asking God to heal your body. Yet, as a very wise woman pointed out, you are already a living miracle. So as we celebrate your birthday, just know we are not only celebrating your birth, and your first year - we are celebrating the lifetime of memories we will enjoy together. I love you, Monkey. Always and forever.

Love,

Mommy

More Teeth for the Little Monkey

Mommy has been teaching Holden the "Happy Birthday" song this week, trying to prepare him for Saturday. I've been trying to explain why birthdays are so special - especially this one (for him). He just grins real big and looks at me as if he really understands what I am saying. Our little Birthday Valentine!!

Although Holden is doing okay, this week has been challenging. He's having another episode of retaining fluid. He is also cutting at another tooth (upper incisor, and possibly another). His pulmonologist wants to wait it out to see if his body can resolve it on its own - rather than just giving him an extra dose of diuretic. The doctor thinks it is possible that the teething is causing or contributing to the retention of fluid. So the Little Monkey has been cranky and not sleeping well. In the meantime, we are just watching him closely and hoping he starts to feel better soon. Looks like babies get 20 teeth. So we only have 14 more to go!! WOW!

Chunk-a-Monk

Holden has had a good week. He seems stronger than he's been in a long time - maybe ever. The Little Monkey (now also called Chunk-a-Monk now weighs 19 lbs. 10oz. He had an appointment today with his pulmonologist and she was very happy with how he's doing and she said his lungs sound clear. So the plan, for now, is to keep things as they are. We may make some adjustments (reductions) to his medications if he continues to do so well. We have an appointment with his GI Specialist later this month. We're looking forward to hopefully making some changes to his feeding, so he can drink more bottles. He's been doing great with what we offer him, so I think he will adjust well to incorporating more bottles into the day.


We are slowly but surely getting a chance to introduce Holden to our friends and extended family. I can't tell you how good it feels
for those in our life to be able to get to know and see us as a family. Our friends Paul and Collin met the Little Monkey a couple of weeks ago and then Brian and Jennifer (photo) got a chance to meet him (while in teething mode) this past weekend. Fortunately as cold and flu season winds down, we'll be able to do more socializing. I can't wait until he can have his first official play date with other babies his age! And although Holden's birthday is February 14, we are working on plans for a big birthday bash out at Stone Mountain Park this April.

Holden and I met Miss Doris this week. She is a friend of our neighbor, Miss Carol. Although Doris had never met Holden, she heard about him through Carol at church and has been praying for him since he was born. After meeting her, it really hit me that there are probably several "Doris's" out there whom we never met, yet they pray for my precious son. To all of you, I want to say thank you. Nearly a full year later, you've keep him on your prayer lists and take time out of your busy day to check on how he is doing. I feel that by allowing myself to be "public" and vulnerable with our struggles it has enabled us to be blessed with with this powerful support circle of prayers and positive thoughts. And every morning when I look into Holden's eyes, I know our prayers are being answered.

The one thing Holden and I do have is alot of time. Please be sure to let us know if you have things in your life that you'd like us to pray for, for you. We'd be happy to add you to our prayer list. Thank you all and God Bless!

More Reason For Hope

After talking with Holden's specialists today, it seems that Reece and I did not fully understand or were initially told incorrectly about the possibility of living with only 3 pulmonary veins. Although only time will tell if this will work for Holden's body, the good news is that IT CAN!! Thank you, God!

What a roller coaster ride!

The Little Monkey has been doing well with his recovery. We have been able to wean him down on his oxygen to 1/2 liter. And although his energy level is not quite back to where it was, he manages to play in between his cat naps.

I reached out to the doctors at Children's Hospital of Boston, who have both a pulmonary vein stenosis and pulmonary hypertension program and have asked that they provide us with a second opinion on Holden's condition. They contacted us within 2 hours of receiving my email and hope to have their evaluation back to us within a week (once they receive a copy of Holden's files). And while Reece and I have the utmost confidence in Holden's Atlanta doctors, I could not sleep at night if I did not try to explore all of our options. And since Boston is the leader in these areas, we'd be crazy not to at least see what they have to say. (We asked for this 6 months ago, but the initial doctor in Boston had not replied.) These diseases/conditions are so new and so rare that there are not a lot of cases to refer to. And so much of what the doctors recommend is speculation and trial and error.

So while we still have a long road ahead of us, I am breathing a little easier tonight. Thank you to all of you who reminded me not to give up hope!!

Good News Bad News

Holden handled his cath procedure very well today. We are so proud of him! This was the first time we were truly able to be an outpatient and did not end up in the CICU!! They had no problems extubated him and he was brought back to his own room to recover. Initially, he was agitated and seemed to be in some pain. But after a mild sedative and some Tylenol, he calmed down and took a much needed nap. He was released around 3PM this afternoon and we are all now home and resting.

The results of the cath brought both good news and bad news today. And in my opinion, the good news is really good, but the bad news is really bad. First the good stuff: the pulmonary hypertension pressures have decreased, the ASD is getting smaller on it's own so doctors are not recommending surgery at this time and finally, 3 of the 4 pulmonary veins look good - free of stenosis.

But bad: Doctors say Holden's upper left pulmonary vein has deteriorated and is no longer providing blood to the heart. His body has, however, somewhat replumbed itself and some of the blood is now flowing through capillaries to his lower left pulmonary vein. Pulmonary vein stenosis is extremely rare (and often incurable), so doctors still have a lot to learn about the disease. But they did say that typically the body needs all 4 veins functioning properly and it would be hard to make it with just 3 veins.

It is days like these that make it hard to have the blog. What I am about to say is raw emotion, and pure exhaustion talking. But it is honest. And while I would much rather crawl into bed and cry - I have chosen to share this journey with you. And I am still glad I did. The good and bad. And despite what we learned today, I still have hope and faith. NO ONE can take that from me. I am sure some of you think I'm crazy when I say this, but I continue to hear a voice telling me everything is going to be okay. I have to believe that "by everything" the voice means Holden. And against all odds, I choose to believe in a miracle. So God forbid we don't get our miracle, then maybe I was crazy and y'all can come visit me in a mental institution (do they still have these around??) because I can not imagine my world without Holden.

So after only getting 2 hours of sleep last night - I'll use tonight to recharge and hopefully catch up on some much needed rest. And then I'll wake up tomorrow morning - expecting each day to bring us closer to a miracle for Holden. God Bless!

Little Monkey is a Rock Star

Our little rock star has been enjoying playing with his new Backyardigans guitar!! He loves music of all kinds, so it's fun to watch him trying to make his own jam!

He is also loving the trucks and cars he got for Christmas. He is fascinated with the tires and making them spin.

I am sure all you Moms can relate to this. Holden is going through his "I only want Mommy" phase. It started around Christmas and while it is incredibly sweet, it also makes it challenging for Mommy to get much done. And in our case, it is hard to "tough love" him and let him cry it out, as it affects his overall well being (I won't get into the medical explanation, but basically, it is not good to let him get too worked up for too long). So I've been looking at it as an opportunity to spend more quality time together. And fortunately, Reece and my Mom have been incredibly helpful around the house. I am sure there will come a day when he doesn't want Mommy around, so I need to enjoy this now!

Overall, he is doing pretty well. He is finally over the ear infections. The past couple of days he has been retaining some fluid, which sometimes increases his work of breathing. But other than that he's holding his own. Doctors have encouraged us to keep him home (away from doctors offices, kids, crowded public places, etc.) so he can be as strong as possible for his cath, which is scheduled for January 23.

On one hand, I am looking forward to his cath, as so much has been on hold until then. But on the other hand, I fear what it may mean for Holden...possibly another hospital stay, the fear of negative results and possibly even surgery if they determine we need to close his ASD. We'll just continue to pray that God heals the little monkey and that he watches over him during his cath on the 23rd. And hopefully as a result of the cath, we, along with Holden's doctors will be able to put together a plan that provides our little guy with the best care he can get - and a roadmap to recovery!