Enjoying the normal things

It has been great to have a low key "normal" week at home with Holden. The little monkey had his 6-month check up with his pediatrician and an appointment with his GI doctor this week. Both appointments went well and the doctors think Holden looks better than ever. We have a consultation with a surgeon next week to discuss his reflux and hernia surgery. Assuming things continue to go well, we will likely schedule the procedure for sometime in October. Although I hate that Holden will have to endure another surgery and hospital stay, we are very hopeful that this will provide the relief he needs, so he can get back to feeding by bottle and soon move to more solids.
Speaking of solids, Holden is loving to taste the variety of solid fruit baby food that Mommy has been offering him. At this point, he is probably wearing more than he is actually swallowing, but he seems to like it!

We continue to deal with the teething (extra drool, fussiness, etc.), but no signs of a tooth yet!

The little guy has enjoyed visits with Grandma Rosanne and then Grandpa Dave this week. And Grandma Deda is coming down from North Carolina this weekend. Lots of "loving" for the little monkey!!

Holden's Theme Song

For those of you that used to watch the sitcom Ally McBeal, you'll remember that Ally, the main character, always came up with a theme song appropriate for that point in her life. Well currently Holden's theme song is "Three Birds" by Bob Marley. He loves the song and when we play it he is full of smiles and taps his feet. The lyrics are as follows:

Dont worry about a thing,
cause every little thing gonna be all right.
Singin: dont worry about a thing,
cause every little thing gonna be all right!
Rise up this mornin,
Smiled with the risin sun,
Three little birds Pitch by my doorstep
Singin sweet songs Of melodies pure and true,
Sayin, (this is my message to you-ou-ou:)

Back when I was pregnant and first learned that my amniotic fluid was extremely low, I sat on the deck in our back yard and told God that I knew our baby was in his hands. I asked him to speak to me or give me a sign that things would be okay. For the first time in my life, I felt as if I heard God speaking (really singing) to me. Ironically, it was this song. A song I had not thought about since the days of Spring Break during college. And it seems anytime I begin to get discouraged, I hear the song. Sometimes in my head, sometimes on the radio or TV and one time a stranger came into the room humming it. Since that night, I've played "Three Birds" for Holden almost every day. It is our daily reminder to enjoy the simple things that God brings into our lives and a reminder that ultimately, everything is going to be okay. I know some may think I am in denial. I say I am in "Belief".

So in addition to lots of prayer, Reece and I plan to send Holden's medical records to several of the top children's hospitals in the nation. We are getting the names of some doctors that specialize in pulmonary hypertension and/or pulmonary vein stenosis. Although we have great confidence in the cardiologists at Egleston, it can't hurt anything to get a couple second opinions.

In the meantime, the little monkey is doing well at home. He seems to be teething. And while he is quite the fuss pot lately, it is great that it is due to normal baby stuff. We have a couple of doctor appointments scheduled for the next couple of weeks and other than that are finally getting back into a daily routine. Assuming all continues to go well, we will likely be back at Egleston in the next 4 to 6 weeks so Holden can have his reflux and hernia surgery.

Holden seems to be growing daily at home. He is just over 12 lbs and over 24" long. He is outgrowing his clothes in length, way before filling them out. Mommy dropped and broke her camera, so it may be a couple of days before I can post new pictures! Love to everyone...

Love,
Christine

Home Again

We were finally able to bring Holden home again on Tuesday evening. It just felt so right to have him back at home with Mommy, Daddy and Alex. Alex (our dog) was thrilled to see the little Monkey and even slept at the base of the crib that night. Holden seems to sense he is where he belongs and has slept comfortably through the night since we've been home.

Although our 6 weeks at Egelston had their ups and downs, we made many friends and feel that Holden received excellent care from most of the doctors and nurses. The plan for now is to just love the little guy, pray for him to be healed and enjoy every single day. We will get back into our own routine and get him healthy and growing again! If all goes well, we hope to return in the next month or two so Holden can have the surgery for his reflux and hernia.

We are continually amazed at the outpouring of love and prayer from all of you - for our sweet baby boy. Maybe the reason God sent us on this journey was to remind us to love one another and to cherish every single day we have here on earth. I think of this every time I look into Holden's beautiful blue eyes.

I've attached a couple of photos taken during our last couple of days at Children's Healthcare of Atlanta. We'll post again soon...

Holden giggling during his first ride in a little red wagon.

Holden loved looking at the mobile that Miss Callie from the hospital brought him to enjoy.

Praying for a Miracle

This journey has certainly had its ups and downs and we have been fortunate to be able to share it with all of you through Holden’s Blog. Your love and prayers have meant the world to the three of us and we will likely now need your support more than ever. Doctors did another catheter procedure on Tuesday to check the pulmonary pressures and see if there had been any improvement post surgery. During the cath, they rechecked Holden’s pulmonary veins, one of which had showed signs of restricting and had been ballooned back in July. Unfortunately, this vein has continued to deteriorate and doctors say there is not much they can do to improve the condition (the disease is called Pulmonary Vein Stenosis).

The Stenosis snuck up on us; we were not really aware of it until just before his first cath exploration a few weeks ago. Because there is no known cure for this disease, it makes all of Holden’s other issues seem insignificant. This was obviously extremely difficult for us to hear and hard to have to tell you. The bottom line is we are not sure how things will go for Holden. Doctors say our little guy may have 2 days, 2 weeks, 2 months, 2 years or 2 decades – we just don’t know. It doesn’t seem quite fair. For now, the plan is to get Holden infection free and home. We are hoping to go home sometime early next week. We will pray for a miracle, so Holden’s body can be healed. In the meantime, we will just love him and appreciate every day that we have together. We are “Holden Faith” that God will guide us down whichever path he intends and ultimately care for our sweet baby boy.

We will update Holden’s Blog as we have updates. In the meantime, thank you for your continued thoughts and prayers.

Below are some recent photos of the little monkey! He absolutely loved playing with his first balloon!

Love,
Daddy, Mommy and Holden

The Little Engine that Could

Doctors confirmed that Holden has another blood infection. The lab was able to identify it and recommend the most effective antibiotic. The little Monkey keeps fighting his way through this craziness. And although we could tell he still didn't feel well today, he looked better than yesterday and had times when he wanted to play, smile and coo. We will likely have to stay in the hospital another week - until his course of antibiotics are complete since they are given via IV. Then hopefully we can bring the little guy home for awhile, returning to the hospital in the Fall for his reflux and hernia surgery. We are so proud of Holden! He knows God has some great things in store for him and keeps going...

2 Steps Forward and 1 Step Back

We should be used to this be now, but it does make it any easier. Holden spiked another fever around 6AM this morning and seemed to feel poopy for most of the day. Doctors sent bloodwork off to the lab as they think he may have another line infection. They may add another antibiotic if the results come back positive. His echo showed some improvement over the one done on Monday, however, his pulmonary pressures were still higher than they should be (doctors say it will likely take a couple of months before we see real improvement in his pressures as a result of closing the PDA). The little guy just wanted to be held and consoled today. Mommy would have stayed and held him all day if they would have let me. It was very hard having to leave, but by tonight he seemed to be feeling better and was sleeping comfortably.