MERRY CHRISTMAS FROM HOLDEN, MOMMY, DADDY & ALEX.

Overall, it was a great 1st Christmas with Holden. Of course we had the typical choas that most families deal with at this time of the year, but all I had to do was to look at the little Monkey to be reminded what this season is truly about. It is about the love that we feel in our hearts and want to share with everyone! And while Holden is lucky to be so loved, we are the ones truly blessed to have him in our lives.

Although we were not able to be with our whole family, as one of Joanne's girls had a cold and ear infection and Reece's sister is not coming into town until this week, we did have the rest of our family here for Christmas Eve. It was great to see him play with his cousins and we can't wait for him to spend time with all of his extended family coming this week!!

Holden had fun riding on his Race Day truck that Santa brought him.

The little Monkey did a great job opening his presents. If I would have known that it was the paper that he'd get excited over...

It has been awhile since I've updated the blog. I'm literally falling asleep typing this, so I'll write again soon, so I can tell you more about all of our friends and family that we've been able to visit with recently. We are so happy that slowly everyone is getting a chance to meet our little guy. More soon...

We're Back Home...

Holden was discharged from the hospital on Friday afternoon. By the time we left, it was clear he was feeling better. He was full of energy and smiles as if he knew we were heading home, back to his puppy dog, his toys and his first Christmas tree. After several nights of interrupted sleep, we both slept great last night and were sleepy heads this morning.

We're back at Scottish Rite

Reece and I made the decision to bring Holden to the Scottish Rite Emergency Room on Monday evening, as his work of breathing and oxygen requirements had increased. And we could just tell that something wasn't right. He has struggled and in my opinion has never fully recovered since his reflux/hernia surgery. Doctors admitted the little guy so they could take the time to try to figure out what is going on. They quickly ruled out RSV, Flu, etc. Based on an echocardiogram, it does not appear that his pulmonary vein stenosis has gotten any worse - of course the cath in January will be much more exact. After discussing things, Holden's specialists think his medication for the pulmonary hypertension may be the cause of his lungs getting wet and thus creating some of his recent respiratory struggles. Although it would seem we could just stop giving him the medication causing the problem, we have to be very careful and mindful as we make changes as Holden is still fragile and sensitive to change. And so much of this is relatively new territory for doctors as pulmonary hypertension and pulmonary vein stenosis are new conditions and certainly not very common. Doctors plan to keep the little Monkey here for a couple more days so they can monitor him as they slowly begin weaning him off this one medication. The hope is that he will respond favorably to the weaning and his lungs will no longer store the excess fluid. This should mean he won't have to work so hard to breath and that slowly we'll be able to reduce his oxygen levels to where they were post surgery.

Holden seemed much more himself today and was flashing his sweet smile at all the nurses and doctors. We were able to wean him a bit more off his oxygen and slowly his work of breathing is improving. Hopefully we'll be home by the end of the week. And in the meantime, I just continue to pray for Holden's healing.

A tough week for the little guy...

Holden had some respiratory issues this week and we are not exactly sure why. We know his lungs were wet and he was requiring more oxygen. It could be another cold or it could be complications from his ASD (hole between his heart's upper two chambers) or our worse fear, it could be his pulmonary vein stenosis progressing. We feel like we had one foot in the emergency room all weekend, until this afternoon when the little Monkey seemed to start feeling better.

I pray for and expect a Miracle for Holden, however, no matter how positive I stay, weeks like this scare the heck out of me. It is a reminder of how fragile the little guy is. And a reminder that we need to enjoy each and every day. I gladly left the house a mess, so I could snuggle with the little Monkey when he felt poopy. It has never taken me so long to decorate our Christmas tree - but that suddenly did not seem quite so important. I know y'all are already praying for Holden, and I thank you! He's in God's hands so I am convinced he can make it through all this.

We plan to schedule an appointment with his cardiologist, so we can hopefully determine why he's been struggling more this week.


On a lighter note, our friends Ken and Carol brought Holden a gigantic singing "Happy Holiday" balloon on Friday. Today, as he started feeling better, he was obsessed with it. He would pull it close and try to wrestle with it. And without realizing how, he would suddening make it "sing". And that would put a huge grin on his face. And even when he wasn't playing with it, he wanted to know where it was at all times.

I love how such simple things like a balloon bring him so much joy!

A Week Full of Fun and Firsts...

It has been a busy, but good week. When my nephew Robbie came down with strep throat, we had to modify our Thanksgiving plans splitting my family into 2 households. Reece, Holden, Grandpa Dave and I headed to Cleveland, GA to spend the day with my sister Joanne and her family. My sister Rosemarie and her family, along with my Mom celebrated in Gainesville. And although we missed them, we still had a great day and I think Holden had a good first Thanksgiving.

After dinner, Daddy, Holden, Grandpa Dave, Steve, Ariana, Alyssa and Alex went for a walk. As you can see, Holden loved getting out.







He also had a blast playing with his cousins, Melina, Ariana and Alyssa. I think it took him a couple of minutes to determine that there were 2 different girls who looked the same. But once he did, he loved all the attention he got from both of them.
















Holden was tugging on his ears alot late last week so we took him to his pediatrican and determined he has his first ear infection. He's on anitibiotics and we're already seeing improvement.

Yesterday we went to visit our friends Mark and Julie who were our photographers at our wedding and we've kept in touch all these years. As a baby present, they gave us the wonderful gift of taking family photos. I don't want to give too much away, as we plan to use a couple of the photos for our Christmas card, but I will tell you that Holden was a Rock Star. He hung in there for nearly 2 hours, more than 6 "poses" and 2 outfit changes. He made Mark work hard to get a smile, but we definitely got it!! Near the end, the little guy literally just laid down on the set and took a nap...too cute!


Today, he felt his first snow flake. There was not enough snow for it to really make an impact, but he liked being outside in the cold.

Tonight, we took the little monkey to get his first Christmas tree. It was so cold, we did not dilly dally. And as it turned out, the first one we looked at was perfect. Holden seemed to like the change in weather and was not phased. He came home full of energy and wanting to play instead of go to bed. But he finally settled and is hopefully dreaming of all the fun he's been having lately!!

Holden's first glimpse at Christmas...

We had a great time with Holden at a Stone Mountain Christmas. From the moment we drove up, he was fascinated with all the lights and music. You can see in this picture he was full of smiles for Grandma Deda! He likes people watching, which you can definitely do there.

Holden did great meeting Santa, but we decided not to put him on Santa's lap since we're being extra cautious about exposing the little guy to germs (not that Santa has them, but there are lots of kids sitting on his lap that do!) We'll look forward to that experience next year.

The Park's Santa (Ed) is awesome and he's got a big heart. I believe he's been the Santa there for the past 19 years. If you've never been to a Stone Mountain Christmas, I would definitely recommend it. It is the perfect holiday outing if you are looking for something the whole family can enjoy together. And no, I do not work there anymore, so this is not a paid endorsement (ha ha!)



Although we only stayed 2 1/2 hours, it was the perfect length of time for an infant and it was a night I'll remember forever.

Chunky Little Monkey

Holden is really starting to chunk up and is quickly outgrowing his clothes. I think he looks adorable and that smile melts my heart daily! Daddy says he now has 3 chins! If you look closely, you can see his 2 bottom center teeth, which are growing in. We think a top tooth may be next.
We've slowly been reintroducing Holden to the bottle. We see the surgeon this week for our 1 month follow up. If all looks well, he will give us the okay to start working on more bottles/solids and less tube feedings. It will likely be a challenge at first, as Holden associates the bottle with his reflux pain, but with patience and time, he'll get there. And he is exploring the world of solids, so hopefully it is just a matter of time until he's eating completely by mouth!!

A special thank you to Isabella and Evan Wilson (and their Mommy and Daddy) for sending Holden the adorable "Mommy's Little Monkey" shirt. Holden likes the shirt and Of course Mommy likes it too!!

Daddy and Holden both had colds this week. Daddy seems better and Holden is going in the right direction. Mommy is desperately trying to avoid the crud. There is definitely no time for Mommy to be sick!!

Prior to Holden getting sick, we were bundling up when taking Alex out for our afternoon walks. He loves that Mommy now puts him directly in the stroller instead of using the car seat (travel system). You can tell he likes to look around at everything.

Grandma Deda is coming in town tomorrow for a visit and we are planning Holden's first visit to Santa Claus tomorrow evening. I can't wait to tell you how that goes. I bet he likes Santa more than he likes the doctors in the white coats!!

Look Grandma I'm Sitting...

Holden surprised Grandma Rosanne when she walked in our house yesterday and he was sitting up on his own - playing with his singing Mickey Mouse. Now that he's discovering his stomach muscles, diaper changes are becoming more challenging!!

We had a quick visit to the emergency room on Wednesday evening, when Holden's G-tube (feeding tube) came out. We are not sure how it happened, but because his surgery was so recent it required going to the hospital to be replaced and then checked for placement via X-ray. Once the tube has been in place for a couple of months, we'll be able to simply replace it at home if/when it comes out.

I am so happy to say that Holden can now enjoy being home and celebrating his first Thanksgiving and Christmas with family - as long as we keep him healthy. He'll head back to Egleston in January for a follow up cath. Hopefully just as an out patient or for a quick stay.

Reece and I are being extra cautious and trying not to expose him to all the crud that is going around out there (and boy did we see it sitting in the emergency room!) It is so hard to not be able to hang out with many of our friends who have kids, but we can't take any chances during this time of the year. It is strange to know how many of you, our close friends and family, have not yet met the little Monkey. I can't wait until the time is right so you can all get to know our son. One smile and you'll be hooked!! Hopefully come Spring we'll have one heck of a "Coming Out" Celebration! In the meantime, we just keeping praying for our miracle and appreciating each and every day!

Back Home...

Holden was discharged from the hospital today and we made it home in time for the LSU vs. Alabama Game. Although LSU lost in overtime, Holden still loves his Tigers (Of course he loves the Gators, too!)

Doctors think the Little Monkey may have caught a cold - possibly even while in the hospital recovering from his surgery. He seems to be feeling much better and was happy to be home again. We spent all afternoon playing and he fell asleep just as the Gator vs. Vandy game came on!


Holden was in much better spirits this hospital visit (no surgery, no IV, etc.). He loved playing with his mylar balloons.





Although Holden is not quite old enough to vote, he definitely had an opinion on who should be president!

Of course Mommy would vote for him!

Little Monkey Under the Weather

The little Monkey was experiencing some respiratory problems yesterday morning, so we brought him to the Children's Healthcare of Atlanta (Scottish Rite) Emergency Room. Because he is still a fragile little guy, they admitted him to the hospital to run tests and for observation. Based on bloodwork results obtained thus far, they've been able to rule out RSV and several other common infections. Right now, it seems likely that Holden just picked up a cold and it had a big effect on him because he was still healing from his recent surgery. Hopefully we'll go home in the next day or two. However, we are glad they are being so thorough as in the back of our mind, we always worry it could be his pulmonary vein stenosis progressively betting worse. So we just continue to say our prayers!!

Despite being stuck in the hospital, Holden has been in a good mood and seems to be slowly feeling better.

Holden's 1st Halloween

HAPPY HALLOWEEN TO ALL OF OUR BLOG READERS!!

Holden enjoyed his first Halloween. He and his little monkey, "Junior", visited several homes in our subdivision.

Holden, Daddy, Mommy and Alex Trick or Treating.

Granma Deda and Grandpa Dave with the little Monkey.

So Good To Be Home

We are home (YEAH!) Holden seemed to recognize it immediately. We were discharged Monday afternoon. He smiled when Alex gave him kisses and he was happy to play with his toys again. The little Monkey slept through the night and seemed to enjoy not being disrupted every couple of hours by the nurses/doctors. Overall, he's recovering well from his surgery, however, he is still experiencing some discomfort from his reflux - just now it can not come up. We hope with time and his reflux medications, we'll see a improvement.

Some "not so great" news is that doctors had a hard time seeing his left pulmonary vein on the echocardiogram they did in the hospital. This could be a sign that his pulmonary vein stenosis is progressing. Unfortunately, the only way to know is to do another cathizerzation. So the little guy will probably be heading back to Egleston for a day or so - in the next 4 to 6 weeks. We continue to pray that God helps heal Holden's body and just hope that things are not getting worse.

On a lighter note, Holden continues to grow and is as cute as ever. We've attached some photos below...

Before surgery, Daddy took Holden on a wagon ride around the hospital.

Aunt Jo Jo came to visit and brought Holden a singing Mickey Mouse from their visit to Disney World. (It plugs into IPOD or CD player) Holden is fascinated that Mickey even sings Backyardigans. Too cool!

Holden sends a big "Thank You" and hugs and kisses to his Stone Mountain Park Aunts - who not only gave Holden his very 1st Pumpkin, they sent pumpkins to all of the children at Egleston's Cardiac Step Down unit. The nurses said there were lots of smiles on the kids faces.

Here is Holden today, at home. He is relaxing in his monkey chair and checking out his new teeth. The little guy is about 14 lbs. It is amazing how quickly he is outgrowing his clothes. He's finally in size 6-9 months. It's great!

One Step Closer to Home...

We were thrilled that Holden was moved to a private room this evening. It feels great to have everything moving along in the right direction. I bumped into Holden's cardiologist when I was walking in with our bags and he kind of chuckled as he looked at my rather large suitcase and told me that if things continue to go well, there is a chance we'll be discharged this weekend or probably early next week. YEAH! We are so proud of our little Monkey.

We think Holden got a second tooth today. He doesn't want anyone to touch them, but when I tried rubbing Orajel on his gums, I was pretty certain I felt both of his bottom center teeth! Between the teeth and his reflux surgery he should be ready for some yummy solids any time now:)

Looks like we'll be home for Halloween after all. Holden is going to be a Monkey and his costume comes with it's very own "little monkey," which we call Junior. We'll be sure to post pictures.

Love,
Mommy

Fighting to Go Home...

So it looks like Holden does NOT have an infection (YEAH)! Doctors are stopping his antibiotics and have determined that he is ready for a private room. Unfortunately the hospital is completely full and currently we are 6th on the list for a room.

The little Monkey continues to raise heck in the CICU and has been fussing on and off today. I am not sure if it is just a teething thing or if he's just feeling better and sick of being here. I would guess both! So Mommy has brought all sorts of toys and DVDs trying to keep him busy. Otherwise, when he gets too worked up, he is sedated - which sometimes is a good thing as he's been fighting going to sleep. Holden's Grandma Rosanne was able to spend time with him yesterday and Grandpa Dave came for a visit today.

We were hoping to take Holden to Stone Mountain Park's Pumpkin Festival before coming to the hospital, but it did not work out. So we are going to try to bring some pumpkins to Holden and the kids here on the cardiac floor. We'll be sure to take some pictures!!

Thanks again for all the prayers. They are definitely being answered!!

Love,
Mommy

The Brave Little Monkey

Overall Holden continues to do well, however, something in his blood work came back elevated today. So they've sent cultures to the lab to see if he has an infection (boo). But in the meantime, they've started him on antibiotics. Let's hope it is not an infection, but if it is, hopefully they've caught it early enough where it does not cause the little Monkey to have any complications.

Mommy did not have a great day. I somehow got a tube stuck in the crib and ended up causing Holden's G-Tube to come out of his belly. Milk was shooting everywhere (a new meaning to "Got Milk?") and the poor little guy started screaming. I am sure he was frightened by my reaction. So now I am traumatizing my poor kid!!! Fortunately, doctors were able to replace the tube and all is well - except I feel incredibly guilty.

Doctors have reduced the amount of pain medicine Holden is receiving, so he was a little more fussy today. His first tooth finally cut through today (YEAH). I imagine some of his fussing is related to that. Fortunately he also had some good (comfortable) times where he would play with his toys, stuffed animals and us!

We are so appreciative of all of your well wishes and prayers. We tell Holden every day how many people love him and are pulling for him. Hopefully he just keeps getting better and better!

Love,
Mommy

What a Champ!

Holden is handling recovery like a champ! Doctors took him off the ventilator around 3AM this (Tuesday) morning. The little Monkey tolerated it very well and was able to go straight back to a low flow cannula at 2 liters, which compared to previous extubations is awesome! It was great to be able to see the little guy awake and alert. He continues to get pain medication to keep him comfortable. And despite having a fever for half of the day, there were even times when Holden wanted to play and be active. Doctors have restarted him on his formula and assuming he continues to tolerate it, we should be back to his usual amount by tomorrow. If things continue to go well, they will likely move him to a private room either tomorrow or Thursday. I am not sure who he gets his perseverance and spunk from, but I am so glad he was born the fighter that he is!!

Love,
Christine

A Great Start...

Sorry for the delayed blog post. It has been a very long, but GOOD day. Holden's surgery was a success. He is now in the CICU recovering. As of this evening, he was still on the ventilator, but was doing a good job with his breathing and will likely be extubated tonight or in the morning. He is on pain medication and sedated, but seems to be doing well.

Mommy and Daddy are proud of our little Monkey. He has had to endure so much but continues to fight his way through it.

Thank you for your calls, emails, thoughts and PRAYERS! We will let you know how he progresses the next couple of days.

Love,
Mommy

Preparing for Surgery...

Holden was admitted to Egleston early - during our pre-op appointment on Friday. One of his doctors had reduced the dosage of his diuretic which caused him to have some respiratory issues late last week. So in order to get him back to his baseline and ready for Monday's surgery, he was admitted early so they could give him the diuretic via IV and monitor his progress. The little Monkey is doing well and is close to getting back to where he was.

I approach tomorrow with mixed feelings. Of course no one wants their child to have to endure surgery. And being back in the hospital quickly reminds me of all the discomfort/pain and potential challenges Holden must face. Yet I realize if the surgery is a success, he will be relieved of a great deal of daily discomfort associated with the reflux. And he will be able to return to drinking from a bottle and eating more of the solid foods he has been exploring. So I pray that God guides the hands of the doctors and nurses caring for Holden and that not only is the surgery a success but that he has a speedy and infection-free recovery.

We thank you for your prayers for Holden and we will post an update tomorrow following the surgery.

Love,
Mommy

A Day in the life of Holden

"I am sporting my Dale Earnhardt onesie from Uncle Richard and Aunt Peggy. I am just hanging out in my "monkey" chair watching the Backyardigans and playing with my toy. Alex, comes by often to check on me and give me sloppy wet kisses (yuck)!"

"Mommy, please don't disturb me during my favorite programs!"

"All this hard work has made me sleepy...."

"I love play time. This jumpy thing lets me stretch my legs!"

"Daddy just got back from Florida and brought presents! Back off Alex, that is my "Florida Monkey"! I missed you Daddy!!

"I love our evening walks! I like to nap as I enjoy all the fresh air. Mommy and Alex are happy to get out and get some exercise."

"Mommy set up a "who's following the blog" on the right hand side of the site. No obligation, but feel free to sign up, so we know who is keeping up with me! Thanks for all the prayers. We thank God every night for all of our wonderful friends, family and supporters who continue to pray for my healing!!"

Love,

The Little Monkey

A Good Day

Holden's appointments with his cardiologist and pulmonologist went well today. Both doctors felt Holden looked the best they've ever seen him. Everyone agreed that he should have the reflux and hernia surgery later this month. So we'll head back to Egleston on Monday the 20th. We'll say our prayers that the procedures are a success and that Holden has an "infection free" speedy recovery. We are very hopeful that having the reflux surgery will greatly improve Holden's quality of life- and enable him to go back to drinking from baby bottles again.

Laura and Chad, Holden's Godparents, gave him the adorable stuffed Lion (that we named Leroy)that you see in the pictures. Holden is giving Leroy some sugar (kisses) in one of the photos and having a full conversation with his pal in the other. It is hysterical to watch Holden when he gets frustrated - manhandle Leroy, almost like he is wrestlimg him to the ground and pins him down.

We'll post again soon. Hugs and Kisses to our friends and family.

It's the little things that matter

If ever there was a wake up call in life - this has been it for me. I can honestly say I am enjoying every moment with Holden. It is amazing how big the little things now seem. I love our play time (he loves his new exer-saucer), naps and evening walks. He is reaching for everything. I think it is so sweet, when he gently runs his fingers through my hair. But, I am sure it is just a matter of time before he'll be yanking my hair out!!

He is doing better with car rides and we went to visit Daddy at work last week. It was great for our BLP family to finally meet our little guy!




Saturdays are full of SEC Football in our house and Holden is learning to root for both LSU and UF. I am not sure what we'll do when our teams play on 10/11. I guess whomever wakes up first will dress the little monkey.

Holden has an appointment with both his cardiologist and pulmonologist on Thursday. We'll post Thurs or Fri and let you know how things go.

I know I sound like a broken record, but thank you for all of your prayers and acts of kindness. We continue to feel the strength from everyone's prayers and we know God is watching over Holden.

My "Mommy" perspective is that Holden is doing very well and we are seeing improvements post PDA surgery. His breathing has greatly improved. We are continuing to wean him down on his oxygen. His color is better. And overall, he seems more comfortable - which probably explains why we see more smiles! He does, however, continue to struggle with his reflux. Unfortunately, this means another surgery for the little monkey, but we are hopeful that this will enable him to turn the corner and really start to grow and heal. Holden has an appointment with his cardiologist next week where they will do another echocardiogram. Hopefully it will show improvement on the inside that matches what we are seeing on the outside. If so, Holden will return to Egleston on 10/20 for the reflux and hernia surgeries.

During our last hospital visit, we made the decision to have Holden baptized. Although we were hoping to share this event with family and friends, it was something we felt important to do prior to his surgery. And while we hope to still celebrate it with you in the future, I wanted to at least mention it now. The picture is from that special day with Father Young, Holden and I (Daddy took the picture). We asked my cousin Laura and her husband Chad to be Holden's Godparents. We are thrilled they said yes! Although we are not yet able to take Holden to Church, we look forward to the day we can introduce him to our St. John Neumann family.

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.

Smiles and Giggles

It has been a true blessing to see Holden getting better daily. He has been full of smiles and giggles the past couple of days and we were told he is now flirting with the nurses! He absolutely loves his Baby Einstein DVDs and CDs and has even been watching some of the Olympics. Mommy and Holden continue our routine of reading a book and saying our prayers every night before bed. Reece and I are amazed at how he is growing up before our eyes (and unfortunately in the hospital).

Grandma Rosanne came to visit yesterday and she and Holden played with his toys and tambourine.

The little Monkey has been weaned down to a low flow cannula again and is breathing more comfortably. Doctors will do another echocardiogram tomorrow to measure his pulmonary pressures. If all looks good, we are hopefully a couple of days away from getting moved to a private room. If the pressures are high again, Holden may need another catherization. Doctors are debating whether we should go home for a couple of weeks before having the surgery for his reflux and hernia. A couple of the doctors have mentioned doing the surgery as soon as his recovers fully from this one (PDA). Either way, we do know that the surgery should be done before Flu and RSV season, so we can keep Holden away from all the germs in the hospital.

We continue to draw on the strength from everyone’s love and prayers and can not thank you enough for your support.

The Comeback Kid

If I were a betting woman, all my money would be on Holden as he continues to fight his way to good health. By Tuesday AM he had done a 180 and seemed to be feeling much better than he had on Monday. He no longer had a fever, his sats (oxygen, heart rate, respiratory rate, etc.) were good and best of all, he was comfortable and in a great mood. The little Monkey laughed at all of Daddy's funny faces and was giggling as Mommy kissed his belly. Doctors have been able to wean his oxygen down slowly and hope to restart his feeds tomorrow. We were happy to learn that Holden is being moved to a semi-private room in the CICU. This will reduce a lot of the excess stimulation that he is currently experiencing.

For me, Holden is a daily reminder of the power of "Faith"!!

Although Holden had a great day on Sunday, he woke up today with a fever and has had a difficult day. Doctors have taken blood to test for an infection. And while we won't have the results for 24 hours or so, they've gone ahead and started him on antibiotics. They also did an echocardiogram - that showed that his pulmonary pressures were high. The only thing I can say is "This Sucks!". It is not fair that Holden has to go all through this - especially more than once!

I know God is watching out for our little Monkey and I try not to get discouraged, but some days are definitely harder than others. Holden seemed to be feeling better this evening and his vitals had definitely improved. Mommy told him he needs to keep fighting and reminded him of all of the great things he's going to get to do when he's feeling better. I even promised him a trip to Disney World to meet Mickey Mouse (one of his favorite stuffed animals!!).

I know I sound like a broken record, but thank you for all of your thoughts and prayers. Holden will be okay. And he's going to be one tough kid after all he's been through. God Bless...

Love,
Christine

Roller Coaster

Holden kept the nurses busy today. One minute he would be doing well and then the next, he would have trouble breathing and require additional oxygen. After throwing a fit this morning, when they moved his bed from space #7 to #13, doctors decided to put him back on the high flow nasal cannula and oxygen. He continued to have his ups and downs throughout the day. Doctors think his lungs sounded wet and gave him an extra diuretic. Hopefully that helps explain things and we'll see an improvement again soon.

Because of today's setback, Holden will be hanging out in the CICU for a bit longer while they wean him back down to the low flow cannula. Although discouraging, we have to remember he was flying through his recovery much faster then doctors had initially thought. So he'll get better, just at his pace. And we are proud of him for continuing to fight his way through this.

Another Good Day for Holden

Holden is doing great today! He was weaned down on this oxygen to a regular (low flow) nasal cannula. They also reinserted his NJ tube and have been able to restart his formula feeding. His continues to receive sedatives and pain medicine as needed.

Mommy and Daddy were able to hold the little Monkey for awhile. He was also able to sit in his bouncy chair and watch Baby Einstein DVDs this afternoon.

We are hoping to move out of the CICU and into a private room sometime this weekend.

Answered Prayers

Holden is having a good day today. Doctors took him off the ventilator and he is breathing on his own with oxygen support. His color looks good and he was sitting up and watching cartoons earlier. He then held Mommy’s finger and fell asleep while we sang him his favorite songs.

He is currently on a high flow nasal cannula. Doctors will continue to wean him down until he gets back to the low flow system. If things continue to go well, we should hopefully move back to a private room in a couple of days.

We are so proud of our little monkey. What a roller coaster ride for a 6 month old. I can only imagine what he’s going to achieve when he makes it past these challenges and is enjoying life as a healthy happy baby!

Photo: Holden, Mommy & Daddy before surgery on Wednesday.

Update on Holden’s Surgery

Holden’s PDA Surgery went well. Although we may not know for weeks if it will reduce the pressure in his lungs, Doctors were pleased to see that when they tied off the valve, his systemic pressures increased (which they say is a good sign). Holden is now in the Cardiac Intensive Care Unit and resting well. For now, he is sedated and still on the ventilator. If all goes well, he will hopefully come off the vent tomorrow and be breathing on his own with continued oxygen support. He will likely be in the CICU for several days, before he’s stable enough to be moved to a private room.

Mommy and Daddy survived the stress of the day and found great strength in everyone’s prayers. We can not thank you enough for the support. The Angels were truly looking out for our little monkey today! We’ll try to post updates every day or so, as things progress.

UPDATE ON HOLDEN'S SURGERY

THANKS FOR CHECKING IN ON HOLDEN. HIS SURGERY HAS BEEN RESCHEDULED FOR TOMMORROW AT 11:00 AM. WE'LL UPDATE HIS BLOG ONCE HE'S IN RECOVERY.

08/08/08 Post

Holden is still at Children’s Healthcare of Atlanta - Egleston, slowly recovering from his catheterization and the infections he got during or following the procedure. Doctors think the infection likely came from one of the lines (cath, IV, PIC, etc.) He was moved from the Cardiac ICU to a private room last Friday morning. As of now, the plan is to keep him here in the hospital where he can receive a full course of antibiotics while continuing to recover. As of today, he seems to be feeling much better and is finally going in the right direction. Mommy has been staying at the hospital with the little monkey and Daddy comes to visit daily.

Holden still needs some surgeries (stomach for reflux, hernia, and PDA & ASD closure, etc...). Doctors are discussing which is most beneficial for him to do first. He will likely have one of these procedures in the next couple of weeks. Then, once he recovers from that -- we’ll be able to go home until he is ready for the next surgery.

Trying to find some humor in the situation… Holden received his first haircut, as nurses had to shave both sides of his head for IVs. So Monkey will be sporting a Mohawk until his hair grows back.

Although this journey has not been easy for the little guy, he is a fighter and will make it through this okay. And I am sure he feels the power of everyone’s thoughts and prayers. As always, thank you for the love and support.

Love Mommy

Update on Holden

Holden is still at Children's at Egleston recovering from his Catheterization that was done on Friday. He is doing okay, but is still requiring more oxygen than he typically needs, so they are keeping him in the Cardiac Intensive Care Unit for constant monitoring while they attempt to wean him back down to the level he was on at home.

And although he made it through the Catheterization and is recovering, the procedure did not provide us or doctors with much information. It confirmed that Holden is complicated as he has multiple issues going on that all need to be considered as we move forward with treatment. They did attempt to close his PDA (small hole between his heart and lungs), however, due to his size, they were not successful and will have to reattempt when he is older. The plan is still to do the stomach (reflux) and hernia surgery in August. By reducing/eliminating the reflux, Holden will be able to safely eat and grow without posing any additional risk to his lungs.

While the little monkey is holding his own in the CICU, he has been fussy on and off and showing the nurses that he's not happy to be there. We are visiting him as much as we are allowed and he seems more content when Mommy and Daddy are with him! We hope to get moved to a private room soon. We are not sure how much longer Holden will be here, but we know he's a fighter and will get through this. We will post another update as we know more. Thank you for the support and prayers!

We're Back!

It has been a couple of months since we've brought Holden home from the hospital and we wanted to give everyone an update on how the little monkey is doing and share some recent photos.

Since we've last posted, Holden has had some great successes - along with some pretty big set backs, but he continues to fight his way through each obstacle.

First and foremost, we are so blessed to have Holden in our family and Reece and I are enjoying parenthood. Even Alex looks forward to his daily kisses (or as we call it, "sugar") from our little guy. The monkey now weighs over 11 lbs and is nearly 23" long. Holden has been enjoying finally meeting his family - including Grandmas, Grandpa, his Aunts, Uncles and most recently, his cousins!!



The month of June brought some set backs for Holden with 2 hospital visits totaling nearly 3 weeks in the hospital. The 1st was due to severe reflux, the 2nd was pneumonia that resulted from Holden aspirating from his reflux. It has taken several weeks for Holden to get back to where he was before the pneumonia. Although he is feeling better, he is still requiring slightly more oxygen than he needed before his hospital stay. Doctors have made several adjustments to his care and we are hopeful that we are now going in the right direction.

Holden does have a challenging summer ahead of him with 2 surgeries/procedures planned. He is scheduled for a cathizeration on July 25 (to check his lungs and heart) and then surgery for his reflux and hernia in August. Although all of these procedures are considered relatively safe, Holden is still medically fragile, so he is at slightly greater risk. As nervous as we are about what the next several weeks hold, we are hopeful that these procedures will help our little guy on his road to being healed.

Those of you who really know me, know I am the eternal optimist. But even I occasionally have a day where I wonder how we are going to make it through all this. But it is those days that I dig deeper, fight harder and pray more. And while I admit, I never thought Holden would have to endure so much, I still believe he is going to be okay. And it is my faith that gets me through and enables me to be strong for my son. And every night, before we go to bed, Holden and I say our prayers and thank God for the good health that he will be blessed with!

We will continue posting updates each week or as we have more information - or more cute pictures!! We thank you for all of your support and love during this challenging time and we ask that you continue to keep Holden in your prayers, especially the next several weeks.

Love,

Mommy