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!

Happy New Year!

HAPPY NEW YEAR!! 2008 was a blessed, yet challenging year for us . We pray 2009 brings lots of healing, love and happiness for Holden and for all of you. I often find myself thinking about Holden's situation and I wonder if we should be living for today (more) or living for tomorrow. I guess I try to have a balance and do both. I want to keep him safe and healthy for a promising tomorrow, yet I don't want him to miss out on too many normal experiences that he deserves to have today. So we try to be caution about where we take him and what we expose him too, while still enabling him to enjoy some of life pleasures. I find myself living for the simple moments (a smile while playing with a toy, the way he grabs my chin and looks me in the eye, watching him with kids) and I try not to sweat the small stuff as much (such as a messy house, taking too long to return calls and e-mails (sorry) or having days where it feels impossible to shower and get dressed).

It feels like the month of December flew by in a flash. Although we had to be very cautious, we were happy to be able to socialize with some of our family and friends. Holden lights up when around other kids. It melts my heart to see him getting hugs from his cousins or smiling at other babies.


Holden was able to hang out with his cousins, Aunts/Uncles, Grandpa, Grandmas, God parents and even some friends. Aunt Amy came all the way from California to spend time with the Little Monkey! Below are just a couple of the pictures from some of our visits...



Yesterday was awesome as we enjoyed the warmer weather at the Park with Alex, Melina, Ariana, Alyssa, Annemarie, Maddie and Max! Holden watched his new buddy Max eat french fries and decided he wanted to taste a fry as well! Holden also had his first experience on a swing. He seemed to like it as first, but then decided he wanted Mommy to hold him. He loves riding in his stroller and watching the other walkers, kids and dogs.

Holden with his second cousins, David and Emily and the girls!

Holden with our awesome neighbors, Bev and Carol and also Holden with his Aunt Sheila (my best friend from Florida).

Holden with Alyssa. The twins are great with him. They seem to know when to be gentle and when to play. I still think he's fascinating that there are 2 of them.

Holden seemed scared of his cousins Robbie and Richie at first as they were rough playing in the house. But his fear quickly turned to intrigue as he watched them play with his puppy, Alex. I can tell Holden is going to have some great times with the boys, once he's able to keep up with them.

The little Monkey has had a pretty big week already and we've just starting the year. It started "not so great" - with an ear infection and cold. But after a couple of days on antibiotics, he's feeling better and full of surprises. After months of fighting "tummy time", he just suddenly started rolling from his back, onto his tummy and back again. And it seems that when Mommy leaves the room and he wants a certain toy, he rolls himself onto his tummy and pulls himself (commando style) to where he wants to go. He is also doing a much better job sitting up on his own. He did it twice today, without any assistance. He also drank a bottle today. It was sweet tea, but it was from a bottle. We are slowly working on his adversion to drinking formula from a bottle as he associates it with pain/spitting up. So his therapist encouraged us to offer him a bottle of something other than formula. And what southern baby would turn down a bottle of sweet tea!! Not Holden. And although I've been saying he was cutting a tooth for 2 months now, he finally got his 3rd and 4th teeth today. It is the upper center teeth. Wow, what a week! Thank goodness for Tylenol (and sweet tea).