Caleb's first and only Thanksgiving (2010)

It is truly hard to believe that it has been two months since Caleb left our family...some of the words below I had to copy from a fellow parent who is grieving the loss of their child who has left for 'home' well before we would have liked.

Everywhere.....
Home.
Church.
Target.
At the mailbox.
Driving down the road.
The grocery store.
A friend's house.
Everywhere I go I think of him.

I miss him so much, there are truly no words to describe how much.
I miss our life before he left for Home.
I miss our family as it used to be.

Thinking of him brings joy.
Thinking of him brings sorrow.
Such opposite emotions mingled together ~
inseparable in the thought.

I want to endure.
I want to have character.
I want to have genuine hope.

I want Ryan & Sara to be better, stronger people because of this.
Therefore, I must suffer.
There is purpose in this process.

I could choose to shut my mind off and not think of him, but what a gift his life was (and still is). Not thinking of Caleb would be not thanking Him for such a precious gift.

We are grieving,

but we are trying to figure out how to live life at the same time!

It appears life is as normal.
We go out in public and on the surface we look "normal".
Everyday is hard. Sometimes it's hard to even breathe or pick myself up out of bed.
My tears are always right below the surface, ready to spill out at any moment.

The reality is even though on the outside everything looks OK,
on the inside we are brokenhearted and hurting.
Reminds me to be tender with others...
because you never know what they're going through.

Happy Thanksgiving from our family to yours! What a different holiday we are going to have this year. We hope you have a truly blessed time with your family. Be sure to make lots of extra special memories!!!

There are truly NO words that describe how much I miss your precious face and everything that made you our perfect Caleb Andrew!

What we love (& miss) about you...

C - character. Caleb you had an amazing personality! You never cried about much of anything. You fussed if you were hungry or tired and that was about it. You loved it when someone was holding you or sitting next to you...esp. your brother or sister.

A - agility. You were more flexible then any little guy we had ever met. Your feet were always up by your head and you LOVED them there. I think you hated sitting up so much because you could not have your feet/legs up where you liked them the best.

L - laugh. You had the most infectious laugh. No matter how hard or busy one of our days was together...your laugh and smile wiped it all away.

E - EYES! Your eyes were the most beautiful blue. They were more beautiful then the most perfect sapphire gem! We received so many compliments regarding your eyes.

B - bounce. You LOVED bouncing away in your bouncy seat. You are the only one of our three that could bounce that seat by yourself or cared to anyway. You would bounce and bounce and bounce yourself until we were motion sick.
*****
A - attention. You got attention everywhere we went. Those that were even complete strangers would stop and talk to you and ask all about you. You were certainly stealing your older sisters thunder. ;) You made so many smile without even knowing you personally.

N - nestle. You could cuddle with the best of them and boy did we love to hold you and cuddle you when you were sleeping...well, anytime for that matter! You loved to have our faces right up next to yours...cheek to cheek.

D - DS! After the initial shock wore off that you had Down Syndrome, we felt truly blessed and honored that we were called to be parents to such a special and amazing child!

R - rolling...rolling...rolling. Once you mastered rolling over, you certainly never stopped when you were on the floor. Up there with rolling...Raspberries! You loved to blow raspberries at us any time, esp. when you were eating or suppose to be swallowing medicine!

E - endurance! You overcame SO many odds and obstacles to even be born, let alone your 414 days here with us. You endured two open heart surgeries with flying colors! Will always wonder where that nasty infection came from that took you from us. Even your favorite cardiologist said it is unusual for it to come on so late after heart surgery. You fought it for 12 days none the less!

W - wonderful...you were certainly beautifully and wonderfully made! This momma cannot wait to hold you again...

Video shown at Caleb's service...

A celebration of Caleb's 414 days on this earth. We are so blessed to have been his parents. We don't know why he had to leave us so quick, but we know that God is in control. He is God and we are not and we trust that he knows what he is doing. Many thanks to Steven Curtis Chapman for writing such a beautiful song...

Link to Caleb's video that his daddy put together for the service...
http://www.youtube.com/watch?v=aWn7Ri8mDiM

This is the video that played during the service, this is not the video OF Caleb's service. We do not have that yet.

Caleb Andrew...we miss you more then words could possibly express! Thank you to each and every one of you who have walked this journey by our side. Thank you for the prayers, meals, support and most of all love as we try to figure out how to move forward without our precious boy. We all loved him dearly and he blessed our lives in so many ways in just the 13 months he was with us. He was such a healthy, happy boy and we will never understand why a nasty infection had to take him from us so quickly. We will continue to use this blog...just may take me a little while to figure out what to say...

Caleb's celebration service

Please join us to celebrate each of the 414 days that Caleb blessed our lives! A casual celebration service will be held at Purcellville Baptist Church (http://www.purbap.org/) on Thursday, 9/22 at 4 pm. There will be a short time of visitation before the service starting at 3:30 pm. There is also a reception immediately following the service.

August 2, 2010 - September 19, 2011

Our precious boy went on to his eternal home to crawl into Jesus' lap this morning. There are truly no words to describe how much we miss him already! I am lost without him and have no idea what to do with myself. This house is not the same without him! There are just no words...

Caleb fought as long and as hard as he could. He probably lasted longer then Drs. expected after an infection like this takes over a little body. They did a great job figuring out what it was and getting him the meds he needed to fight the infection, but the damage was already done to his vital organs. His heart couldn't handle the dialysis and other interventions he needed.

We thank you all so very much for the encouragement these last couple weeks. They kept us going during a very rough road.

John & Joanna

We are getting very close to losing our precious boy...dialysis things had to be changed this morning and when they tried to hook him back up to it he had no blood pressure and heart rate about stopped. They had to do chest compressions and a lot of intervention to get him back...he is barely stable at this point and dialysis obviously cannot be started again at this point....

We are faced with the decision whether to put him through another heart surgery to fix the flaps on his valves that the infection ruined or what to do at this point...

On to dialysis...

Friday - Caleb was put on dialysis for the main purpose of trying to help him get this fluid off. It has built up so much in his system that he is having trouble breathing well at this point. It has built up in his belly so that his lungs are not able to take the deep in and out breaths that it needs to. We had a VERY rocky start to Caleb's dialysis as it made his heart rate low and his blood pressure really low. This also makes him very cold and his core temp was only 94 at one point. He is now under a very cozy warming blanket. His oxygen numbers all day had been a problem because of the increasing pressure on his lungs. His ventilator is set at the highest rates possible, so there is no room to go anywhere on that. He did receive some blood last night as starting dialysis obviously uses a lot through the machine at a time, so he was needing some more to compensate. It seems like once the extra blood was on board he was becoming a little more stable. So I headed home for a few hours sleep. Huge thank you to those who donate blood!!! Caleb has needed it quite a bit this week!!

Saturday - I had a very frank conversation with the Dr. this morning when I got in here. We are basically struggling with how much we are keeping Caleb alive with all these machines vs. what is still trying to save him? The Dr. basically said we are still saving him at this point, but we are certainly not far from the fine line that changes to keeping him alive. We do not want our precious boy to continue to suffer if his body is just not able to heal at any point. So we ask for your prayers that HIS will be obvious to us and the Drs. in where we need to go from here in Caleb's treatment. They are much more drastic measures they can try, but we are truly hoping this dialysis will be the answer to his problems and it will be able to get all of the excess fluid off as fast as they can. From there - everything else will be able to heal!

Psalm 107:26-30
New King James Version (NKJV)
" 26 They mount up to the heavens, They go down again to the depths; Their soul melts because of trouble. 27 They reel to and fro, and stagger like a drunken man, And are at their wits’ end. 28 Then they cry out to the LORD in their trouble, And He brings them out of their distresses. 29 He calms the storm, So that its waves are still. 30 Then they are glad because they are quiet; so He guides them to their desired haven."

Thursday - 9/15

Well, one would hope after being here almost a week, we would have plenty to report and update...not so. Sorry to say, we are not really getting very far in Caleb "better". When some lab work shows improvement one place, it also shows that other things are worse. At this point, Caleb has retained so much fluid that he is huge and in a size 6 diaper! He came into the hospital in size 3!! It is miserable to watch and can only imagine how he feels about it all. Although, he is kept completely sedated because of the ventilator. Drs. have tried different meds to make him get the fluids off, but they are just not doing much. His blood pressure has been better the last 24 hours so they were able to come down quite a bit on the blood pressure medicine. This has to be the worst thing a parent could go through...spinning our wheels in hoping Caleb will get better. Just feels like they have been spinning for days now and we are just not seeing any improvement. The liver seems to be getting better according to the labs, but the kidney numbers are worse OR you have one lab item show improvement, but the other lab pieces that go to that puzzle are worse, so he is certainly keeping these Drs. and residents on their toes! I understand this is going to be a very long, tedious process, but it would just be so much easier if we knew how things were going to go...how well he may or may not recover, etc...

So if you are the kind (like me) who likes to know the full run down...
Neurological - hard to say what brain damage has occurred but he does start to stir every so often, but he is just given meds to put him back to sleep.
Respiratory - he is on a ventilator, but his lungs are becoming really affected by all the fluid that is in his body plus that level of inactivity.
Cardiology - his heart rate has been fine. His heart function is somewhat affected. He has what is called endocarditis (sp?) which is where the lining on the inside of his heart is very swollen and mad. This is what is affecting the flaps they just made for him during his heart surgery as those do not open and close anymore. so as the heart pumps out, the heart is not relaxing enough to fill back up with blood and these flaps on his vessels are causing all kinds of 'leakage' or blood just free flowing in and out of the heart. Not pumping out and staying out to go to the body...just back and forth through the wide open vessels.
Liver - lab #s show slight improvement each day, but his bilirubin is becoming quite elevated so he is a little yellow, but NOT the type of bilirubin that can be fixed with photo therapy like newborns.
Kidneys - lab #s show a decline in function each day, which is the cause of why the fluid just keeps building up in his body. But yet, some electrolytes that would be affected by this lack of function are fine.
The cause of all this - Alpha Hemolytic Streptococcus!!! A raging strep infection in his bloodstream. It is a Strep that is found naturally in our saliva and GI tract and how Caleb's got into his bloodstream - we may never know. :(

Will keep this updated as best I can as anything changes, but at this rate...
As you can probably tell, I am quickly becoming one very weary momma. Having a very emotional day and just do not know what to do at this point...how long do we "wait and see"???
Thank you again and again for your support, encouragement, comments, meals, and prayers through all this!

Joanna

Sunday update

Good evening! We are basically still in a wait and see pattern...there is not much that has changed with all of his blood work, etc. The good thing we have to look at is that nothing is worse...just holding steady. Unfortunately, this is holding steady at "very critical", but holding steady none the less! His liver function tests still show a very sick organ by how insanely high the numbers are for his liver function so that has not gotten any better. His heart has been affected by this infection by more leakage from his surgery areas then before and the right side of his heart is not functioning the way it should or as well as it should. His kidneys are not working as well as they should, but at this point it has affected his liver the most! That is basically not working at all. This affects how well his blood clots, his glucose/blood sugar numbers so he has been on a little sugar IV as well as insulin and I am sure many more things. They are trying their best to regulate everything as well as they can from the 'outside'.

The cultures they have sent off to the lab are already showing something 'growing' in the blood culture. So far they are thinking it is some kind of strep infection...which one, we do not know yet. Here's hoping that the antibiotic they have started him on is near the one he needs to kill this nasty infection. He has been given medicine to help him void some of the fluid that is building up greatly in his system. He now looks like a sumo wrestler...it is pitiful! I guess I could take a pic of him tomorrow just for you all to see our extremely strong little guy!

Thank you all SO much for your prayers and words of encouragement. I came home tonight to get clean and to hopefully get some sleep. I also needed to see Ryan and Sara as I have not seen them or been home the last couple days. Here's hoping with tomorrow being Monday things will move a little faster when it comes to Drs., etc. It is always hard in a hospital on the weekends, they are just not staffed the same as they are during the week.
Please pray for John as he tries to focus at work, for Ryan as he just started the 5th grade and my parents, etc. who are caring for each of us the best we all can!
Thank you!
Joanna

Caleb update - Saturday PM

Please forgive me for copying and pasting these from facebook...this momma is beat!

Caleb was transfered to the PICU Saturday morning as his blood pressure was dropping really low. They gave him a lot of fluid and it did help. Unfortunately, his body is just holding on to all the fluid and he is looking quite puffy! For some reason his body is just not placing all this fluid where it needs to be. He has had an Echocardiogram this morning which showed some leakage at certain vessles/valves but we are not sure how much more there is vs. previous echos. Here's hoping they can put something together from all this! Thank you all so much...this momma is certainly getting VERY worried. :(

At this point, the Dr. is telling us that they think Caleb has some sort of hepatitis (sp?) infection and he is basically in liver failure and his heart is not doing well...he has been put on the ventilator, etc. to see if it will give his body the rest it needs to heal...he is VERY critical at this point...

Saturday PM update - Caleb is about the same as he has been. Most of the bloodwork and tests are either the same or slightly better...so I guess we can stay that he has remained stable at very critical. So it is a good thing that he has remained this way and has not gotten any worse as the day progressed. He is looking like a football player with how swollen he is becoming as he is still holding on to all the fluid.

Here's hoping this is just a 'hiccup' in Caleb recovery...

Wow...well, I can certainly say we never thought we would be back in Fairfax Hospital so soon! We knew if Caleb was ever sick enough for the hospital, we figured it would have to be Fairfax since the hospital closest to us just does not have the Peds department that he needs...never imagined it would so soon after his heart surgery! But here is whats going on...

Caleb was not eating well Wed. evening and was certainly not sleeping well Wed. night, but that is not unusual, esp. the sleep part since his surgery! By Thurs. morning when I tried to give him his morning bottle and the first ounce that went down, came right back up again...I knew something was up. So I took him to the pediatrician like I usually do when he is clearly not well and they thought he seemed like he had a typical stomach virus and said he did not seem dehydrated yet, but that his heart rate was up in the 150s so he wanted us to head to the cardiologist to make sure everything was still going on okay in there...so off we went to Leesburg to the heart Dr. to get checked out there as well. At this point, Caleb had nothing left in his system and was "gagging" (as I will call it) every so often. He checked out fine with the cardiologist so home we went, hoping that this was a 24 hour thing and he would be over it quickly. As the afternoon progressed and he was clearly not turning the corner to holding down pedialyte, I just took him straight to the Loudoun ER. There they hooked him up to some IV fluids and gave him some Rx med for the nausea and thought that would be enough. Needless to say, he continued to gag on a regular basis and so he was admitted. By morning, he was not doing any better and his gagging seemed to be getting worse, esp. after we tried to give him any sort of pedialyte by mouth. We started to notice his eyes were getting puffy and so next thing I know his cardiologist (the BEST Dr. in the world) was at his bedside checking him out. He still did not feel (as the cardiologist had said the day before) that this was heart related and so they needed to do further testing...this brought us to a sonogram of his abdomen. They did let him get a little morphine before attempting the sonogram as he would have NEVER been able to handle it otherwise - at this point, Caleb is clearly miserable! The sonogram of his belly showed fluid built up around his organs as well as inflammed kidneys and an undetermined 3mm 'growth' on his liver. With all this and some fancy names that go with these conditions, he was transported to Fairfax Hospital. This evening was a whirlwind after he arrived as I had to tell his "story" to his nurse, the doctors there, etc. In the end, they have NO idea why he is gagging so much, why this fluid is building up in his system and he is not peeing it out, etc. The Loudoun Hospital peds Dr. basically said it could be heart related, kidney issue, liver issue or an infection...there are a lot of pieces to a puzzle that just does not seem to go together!

We ask for your prayers as the doctors start doing a lot of tests to try and determine what is going on with Caleb's system. We pray that HE will give the Drs. quick and clear guidance as to what is going on and what has caused this. Most of all, we pray that Caleb will once again be completely healed!

Thank you,
Joanna

13 months old...

Today was interesting as I had a lady come up to me in the grocery store and ask me "how old is your baby?" I proceeded to tell her that he is 13 months old today! She told me she had a 9 month old grandson and then she basically asked me what developmental things Caleb is doing...well, I explained to her that he has had two heart surgeries in the last year, so we are a little behind. She was shocked and thought he looked so good for having heart surgery just 3 weeks ago. Guess it at least got us off the developmental subject - esp. since Caleb is not even sitting up on his own yet! Oh well...all in due time. Hopefully once he feels better from his surgery and gets to moving around more, he will catch up quickly. So at 13 months - Caleb is rolling! No sitting up, crawling, walking or eating table foods (he only has one tooth!), but hey, he made it through his major heart surgery with flying colors!! That is something worth being thankful for at 13 months! :)

As for surgery recovery...he is still doing well. We have to carry him around like a sack of potatoes for another 5 weeks, but he at least had no complications. He continues to not sleep very well, but hopefully that is coming soon.

Thank you for all the meals, prayers, cards and words of encouragement you have provided us over the last 13 months! Here's to another 13....YEARS...and then some! :)

As you can see in the first picture, Caleb's favorite thing is his feet! His brings them up to his face and past his ears ALL the time...they are truly his favorite toy! He is quite the flexible one!

3 weeks later...

It is quite hard to believe that it has been 3 weeks since Caleb had his heart surgery! Yet, on another hand, it feels like it has been months...

Caleb is doing really well, despite all that he went through those first 9 days after surgery. He was on SO many medications, many drugs to keep him sedated, etc. It is amazing he is not on ANY medications now for his heart! He does not last long without any Tylenol or ibuprofen in his system, but hopefully those will be done soon too! Our biggest struggle right now is SLEEP. We are not sure if Caleb is really uncomfortable when he is trying to sleep or whether he is having some kind of anxiety from his hospital stay?! It is really hard to tell but at least he is easily consoled when we pick him up...but that is not helping him get the much needed rest that his body (and ours!) so desperately needs! He is not even sleeping well at night anymore...we at least had that a week ago. :( Here's hoping whatever is plaguing him in his sleep will pass soon...

Caleb has had several appts. since he left the hospital. First stop was with the pediatrician for them to see him after his release from the hospital and he thought he looked great! Next stop last week was a check-up/post op visit with the cardiologist. He is very pleased with Caleb's progress and how well he is doing...besides the sleep part. They did another echo cardiogram (sonogram of the heart) and it looks just like it did after surgery when they did a couple of them in the hospital. The heart doctors are all so happy about his repair and how well it all looks. There are a couple leaky spots, but with how much work they did, a little leak is superb. He basically said that most with this big of a repair have a lot more leakage at the valves then Caleb does. So that is wonderful news!

Yesterday he had his 12 month check up with the pediatrician he usually sees and he was certainly thrilled with how well Caleb is doing and certainly happy the surgery is behind him! He now weighs 19 lbs. 4 oz and is 30.5" long. He has gained a pound just since we got home from the hospital...told you he has been eating really well since we got home! I think he is making up for all those calories he was burning with his heart the way it was. :) Now if we could just get him to make up in the sleep department...

Thank you all so much for your prayers and support during this time! He is certainly an amazing little one...I have seen shirts that say "tough guy" on them...he really needs one!! :)

Joanna

Post Op - Day 5 - 12

Wow - as you can probably tell by the delay in an update that Caleb is HOME! Once Caleb was transferred to the "floor" (reg. children's floor from PICU) on Day 6, everything went very quickly from there. I had to stay at the hospital the first night because Caleb was having some "junctional rhythm" issues and he was not sleeping well at all in his new room (w/a roommate!). So I felt I had to stay...one very LONG night to say the least!!! The rhythm issued seemed to be better by Day 7, so they said if everything continued to look good all that day, then we could probably go home on Thurs. (Day 8). After only 9 days since his surgery...Caleb was headed HOME! :) He was still having some PVC (premature ventricular contractions) but the cardiologist is not worried about this and is hoping they cease once his heart is more healed. Here's hoping they do! It is like a little extra blip on the heart monitor before you see the real heartbeat. Not sure if he feels them or not, but hopefully they will be going away as the heart heals. The cardiologist will be keeping a very close eye on him for the next few weeks, glad we like him so much! :) He will hook Caleb up to a 24 hour heart monitor if he feels these PVCs are not better in the next couple weeks.

Caleb has been doing well since he got home. He really tricked us by taking a 4+hour nap his first afternoon at home...he has hardly slept that much since. He is having a very hard time getting to sleep and when he does finally sleep it is not for long. I am only able to give him ibuprofen (they really only wanted me to give him Tylenol), so I am not sure how much of this restlessness is from pain or completely being overtired now or what...so we could certainly use some prayer in that area...SLEEP. He just cannot seem to find that comfortable spot to get a good sleep. Needless to say, this makes for a cranky, easily irritated little boy! Also keeping mommy on her toes...certainly not getting any downtime from his constant care. The fact we cannot pick him up from under his arms is quite a challenge too. You would be surprised how often you adjust him in your lap or pick him up from his bed, floor, etc. by his arms! A lot of scooping going on...and it isn't easy for a 19lb. 1 year-old!!!

Caleb is eating VERY well. He is eating more since he has been home then he did before surgery. His bottles are bigger and he is eating just as much food as he was before. So he is not lacking in that department!! :)

Thank you all SO much for your support in this labor intensive, exhausting journey!

Will keep you posted as much as we can at this point. He has a cardiologist check up on Thurs. so hopefully after that if he has anything special to say.

Joanna

P.S. The picture is from Caleb's last morning in the hospital...we were just starting to see a few smiles...they have been greatly missed!!! They are still hard to get, even to this day, but every now and then we are blessed with one. :)

Post op Day 3-4

Saturday - The ventilator is OUT! The extubation went very smoothly to say the least. The Drs. were well prepared for whatever may happen after the extubation, but thankfully all he needed was the nasal cannula, on a very high flow of air. This is creating 'postive pressure' against his floopy airway to keep it opened up. They are also trying to wean him from some of the meds, but that is a very slow process. So now that he is breathing on his own, they have to change what sedation meds they can give him, so that has been interesting on what works and what barely touches him. I have learned that kids with Downs metabolize certain meds very quickly and some of the pain meds/narcotics and sedation meds are included in this. The extra chromosome causes this quick metabolizing of some meds.

Sunday - Today was a long, uneventful day. Caleb's pulmonologist is now in the picture to look over his floopy airway issue and to make sure he is getting all the attention he needs in that regard. They left his airflow in the nasal cannula at 10 for now, which is alot! I think they are all a little aprehensive about changing anything in this regard just because of what may occur. Here's hoping they feel they can start to turn it down little bits at a time to see how he does. Caleb was more awake today and I actually could make some eye contact with him for a few moments at a time before he would fade off to sleep again. I am not sure this is a good thing because when he comprehended that it was me, he started to really fidgit and put his arms up as to say "pick me up mom!" Ugh...I can't! He still has two main IV lines in so he cannot be held. It has been 5 days since I have been able to hold my precious boy! He was able to start very small feedings this afternoon through his feeding tube. They will increase that little by little as he tolerates them. I am sure he would much rather suck on a bottle though! :) Our setback today was blood in his urine...not sure what this is from and of course to send it to the lab to check for infection takes a couple days. So hopefully nothing is brewing in his bladder/kidneys in the way of an infection. We are all hoping it is just irritation in the bladder from the catheter. They did remove the catheter because of this, so hopefully it will clear up soon.

We also added to the daily playbook some horrible looking "breathing treatments". These are for a section of his upper right lung that is deflated. Apparently normal after surgery, but there none the less. So they put a mask over his face to force a large amount of air into his lungs to try and get this section to open up. Caleb resists these treatments and gets very upset, obviously...it has to be quite scary to a little guy! To me it just looks like torture. They do this every 4 hours.

Thank you all so much for your prayers and support.
We would not make it this far without you! Caleb is coming along...one baby step at a time! :)
Joanna

Post Op - Day 2

Sorry I have not updated since surgery day...but not much has changed. We are truly blessed that Caleb has not really had any major issues since surgery, just the low blood pressure. The only major issue we are having are his wiggles. Apparently, kids with Trisomy 21 have the extra chromosome which can cause them to metabolize some meds quickly, this of course includes narcotics and sedation. So today he was given a different combination of meds to sedate him, rather then the paralytic they were giving him to completely knock him out. He needs to be so sedated b/c it is very risky to let him wiggle and possibly pull on the ventilator or an IV, etc. He is certainly more of a danger to himself when hands and feet start moving. He can not come off the ventilator on the paralytic, so heres hoping he remains stable on the new sedation meds so they can start to wean him off the ventilator tonight/tomorrow. They were talking about trying to remove the breathing tube tomorrow, but there are a lot of things that can cause that to change. His floppy airway is certainly playing a major factor. here's hoping for a perfect extubation! :)

He was moved to a private room today, out of the post-op/shared room he was in, so that is much nicer. It's just nice to have a place to sit down!
Thank you all so much for walking with us on this journey. We have some very rough, long days ahead once he truly is allowed to wake up...how in the world does one entertain a 12 month old in the hospital?!?

Joanna
P.S. I will post a pic of him when it is not so graphic. it is a little hard to see him so buried with IV lines, ventilator, etc. at this point. Not to mention his incision...

Surgery day...

Today began bright and early with Caleb being taken back to the OR (well, I went with him till he was 'asleep') at 7am. We did not realize the anesthesia part would take up so much of the operating time, but they had to start three central lines for him after he was asleep. We received our first call about 9 AM that the surgery had begun, so we thought we would have just a few hours to wait until he would be done. Well, 3 hours turned into 4 and finally by hour 5.5 we received a call saying that he was off the heart and lung bypass machine and he would be done in about an hour. By 3:15 we were meeting with one of the surgeons who said that things went well. It took so long just because there was so much that needed repairing. Kinda scary when one of the surgeons describes the holes in Caleb's heart as "huge". :( Tonight he is trying to rest, but being a pickle about it. He is obviously irritable from everything and very restless. His blood pressure is also very low and they have tried giving him blood, extra fluids, medicine, etc. and nothing is working too well so far. Here's hoping with a little rest from sedation it will help. He was on the heart and lung bypass machine a long time, so they are thinking he needs lots of extra fluids tonight to hopefully help the low BP. We thank you all so much for the notes, comments and prayers today on all of our behalf. We have a VERY long road ahead to get Caleb well enough to come home, but here's hoping we are able to see a little progress each day!

Thank you all so much.
We certainly covet your prayers for our precious little guy!

Joanna

Schedule change...

Well, when you have two of the best pediatric heart surgeons in the area, you have to be flexible! :) We received a call this morning that Caleb's surgery needed to be moved to Wed. AM. Apparently a little one was born over the weekend that needed surgery today, so today's scheduled surgeries were bumped to tomorrow and so Caleb is bumped to Wed. We are just thankful he did not get bumped any further then that. Aunt Ginny is here from Georgia and my parents all came in today, so we are ready...well, ready as we will ever be I guess...

Thank you for checking in...we will get an update posted just as soon as we can!

By the way, I know some of you are wondering exactly what type of heart surgery Caleb is having...
He basically has two things that need fixing. Both are typical with Downs kids, but not usually both - lucky Caleb! He has the hole in the middle, so he has two chambers instead of four inside his heart so they will be making/connecting the middle of his heart so he has four chambers. This also includes making one vessel into two, also making flaps that open and close to go with them. Eek. He also has "Tetraology of Fallot" which is a narrow pulmonary vessel. The BT shunt that was put in there at 2 weeks old has provided him all this extra time to grow bigger for surgery. They will remove the shunt and enlarge the narrow vessel, which will hopefully not cause him anymore 'blueness'!! :) Obviously some very tedious work to be done...thank goodness there are very gifted surgeons to help little ones like Caleb! I think the hardest part for this momma is thinking about him being kept alive by machine for a couple hours while they work on his heart. Necessary, I know, but nerve racking none the less.
I am probably not doing the descriptions any justice, but that is about as basic of a description as I can do. :)

Until Wednesday...
Joanna

The dreaded day is just about here...

Happy day before Caleb's surgery! I just wanted to thank each and every one of you who has encouraged us and prayed for each of us this past year. It is hard to believe that Caleb is one year old and exactly one week later is going in for his major heart repair surgery...

Over the last week, we have endured his heart catheterization procedure and a very long pre-op check up at the hospital. His oxygen numbers seem to have dropped drastically lately, so he is certainly in need of the surgery at this point...at least we are not second guessing ourselves and wondering whether we really need to put him through this yet...he certainly is in need!

We covet your prayers as we enter this very difficult journey. We have no idea what to expect, esp. as Caleb is older this time around and will certainly not be sleeping in the hospital the entire recovery. :( Any suggestions on how to entertain a 12 month old in the hospital?!

We will keep you updated as much as we can!

THANK YOU!

joanna

11 months and counting...

Well, the dreaded countdown is on to Caleb's heart surgery...August 9th! It is a day we have dreaded for over a year now. It will truly be an experience we will never forget. Not that it wasn't the first time around, but this time...it is SO different, SO much harder! I have cried about it, prayed about it, tried handing it over to God many times, and am so anxious I can't imagine being able to sleep as it gets closer, but we know God has placed Caleb in our family for a reason and so I have to believe that He will get him through this as well. We can't wait until this is over and he is back to us with a new strongly beating, healthy heart. He will go in on 8/1 for a heart catheterization procedure for the cardiologist to take all kinds of pictures, measurements, etc. to prepare the surgeons for exactly what they will be dealing with once they operate.

Below is a few pics of Caleb's 11th month so far...we made it to the beach for a few days. Trying to sneak a 'vacation' in with the older two before the summer becomes all about Caleb again. So there is a pic of him at the beach, enjoying HIS time with the remote, etc. :)

Thank you all for your prayers as this journey continues...
stay tuned, we will certainly update here as we get through each day.

Joanna

11 month pics...

Caleb's first trip to the beach

Caleb with his newest cousin Maggie

Caleb enjoying a little time with the remote :)

10 months ago today...

Caleb Andrew came into this world and he has blessed all of our socks off ever since! He has defied so many 'odds' already, he is truly a miracle. Coming into the world with Downs and two heart conditions, all doctors said he would have such a hard time. He has truly shown them! :) He is growing beautifully and our last visit with the pediatric cardiologist (we saw a different one this last check up), well, lets just say, he was amazed. I am sure before he came in to see Caleb, he looked over his file and expected to walk in and see a sickly, small baby. No, not Caleb. The cardiologist kept saying over and over "he looks SO good!" This doesn't mean Caleb does not need his major repair surgery, unfortunately, it just means Caleb has defied so many odds in the heart defect world. He has grown well, he is very alert and attentive, he is rolling, overall a very happy boy. We are hoping to avoid the dreaded heart surgery until right after his 1st birthday. His big brother, Ryan, will turn 10 on 7/31 and Caleb's bday is 8/2, so we are hoping to get those celebrations in before life turns all about going to and from Fairfax Hospital again.

Caleb now weighs 17 lbs. 3 oz. He is quickly outgrowing the "infant carrier" car seat, but he is not sitting up yet...so that will certainly present a challenge when it comes time to run errands and he cannot sit up in the shopping cart. His therapists are certainly working on this every time they come, here's hoping he will get the hang of it soon. His muscle tone is a little low b/c of the Downs, so using all of those muscles to sit up and hold himself there is a little bit of a challenge, but we know he will get it!

Thank you so much for joining us in this journey! We will certainly keep you updated as to when his surgery is scheduled. They have to do a heart catheterization procedure first, which is going to be in mid-to late- July. This will give the surgeons all the pictures they need of his current heart situation before they get in there. They will know exactly what they are looking at when surgery time comes. I am not sure how this momma is going to handle going through all this with our precious boy, but he did great after the first surgery, so we can only pray he does just as well after this one. His complete repair is SO much more intricate though. Not to mention, we are all much more bonded to him now. Dear Lord give me the strength!

Coming soon...

Just wanted to let you know that Caleb turned 9 months old yesterday, wow! We are having him dedicated this Sunday, Mother's Day, so stay tuned...more pics and dedication photos coming soon...what a huge milestone for all of us. A year ago, we were wondering how in the world we would get through this pregnancy, esp. how he was going to 'turn out'...look at him now! :)

8 Month pics...update below...

8 Months and we are on a roll...

Once again, we are here hoping we have not lost all of our 'followers' with our delay in updating Caleb's blog. Sorry!!

The last couple months have been quite busy. My original surgery was cancelled by my GYN, so I proceeded to a new one and so thankful I did! What a great Doctor!! He had no problems "taking care of this problem" for me and so he did. March 17th I endured my first major surgery and am recovering well. So far anyway. :) It is hard to not do too much around the house, as everyone says you only have one chance to heal, so I am trying hard to 'rest'. he he...pretty tall order for a mom of 3. I am just glad to have it behind me as we prepare for Caleb's heart surgery in the next few months. Here's hoping I am back to 100% by then.

Caleb continues to bless us each and every day. He is now rolling all over the floor and bless us with a wonderful smile whenever we need one! We never know where we are going to find him once he gets rolling, he certainly does not roll straight, a little too head heavy. :) He weighs 15 lbs. 9 oz. now as he loves his solid foods. We are already up to twice a day on solids, so I am sure he will be on a more regular schedule soon.

His last cardiologist visit surprised us as his oxygen was back up to 85, so surgery was not as close as we had thought from his previous visit. So here's hoping that continues and he will be as close to one year old as possible before he will need to have his heart repair surgery done. At his previous visit his oxygen was down to 81, so the cardiologist certainly thought it was going to continue to drop slowly so we would need to start thinking about the surgery in the near future. He does go back in a couple weeks, so I guess that will be telling as to whether his oxygen is still good or low again. He also goes to a pulmonologist for his floopy airway, although there is not much they can do for that. I guess it would require surgery if there was a defect, but his upper GI did not show one, so it is just a really noisy airway. Some days are better then others, but boy, he sure can get noisy.

Thank you all so much for your continued support and prayers during this journey.

Enjoy all the pics!

6 months later...

...here he is...rockin' some red in honor of National Wear Red Day. Yes, it is mostly about women and heart disease, but Caleb is still in great support of the Heart Association and their work in raising awareness of heart disease/issues. :)

Also included is one of our first attempts at starting solid foods! At his 6-month check up the other day, he weighed 13 lbs. 11 ounces. 26 1/2 inches long. Still a peanut, but we love him all the same. He is starting to roll over from tummy to back and is holding his head up with great support. It is not bobbing around near as much anymore! Thankfully he is now old enough to try some solids. So a couple nights ago we tried a little bit of the good 'ole Gerber rice cereal...needless to say, he loved it...but so far it has not loved him. We went to put him to bed that night (an hour or so after his cereal) and he was very restless, he could not get comfortable every time daddy kept trying to lay him down. I guess I will try it during a different time of day and see if it still has the same effect. Here's hoping he is not already "allergic" to something.

Surgery update...

It is very hard for me to say that I went in to the GYN for my pre-op appt. this past Tuesday, only for her to tell me that she is not willing to do the hysterectomy anymore! I have been devastated to say the least. When you have spent as much time (week after week) dealing with this 'issue' as I have, her saying that she was not willing to do the surgery anymore because it is just not medically necessary YET...there are just no words. I have spent WEEKS trying to "hang on" till this surgery...knowing that if I can just get there, I will never have to deal with this again. My wonderful mom has been up here almost 3 weeks helping me get through this time, providing much needed extra hands, etc... and now she won't do it?!? The biggest disappointment of my life, that is for sure. But how a Dr. can change her mind 5 days before surgery is beyond me! :(

In the end, she is going to keep my time slot on Monday in the OR and just do a procedure that she hopes will help. I am just hoping that it does not throw me into another 3 week tailspin!!

January 2011

Please forgive me for not updating this blog more often! I know there are many out there who keep checking this to see how Caleb is doing...so sorry!

I (Joanna) have been dealing with miserable post-partum issues ever since Caleb was born and it has just continued to get worse over the last couple months. I am scheduled for surgery on 2/7 and would appreciate prayers as I will be recovering from a hysterectomy at that point. I will not be able to care for Caleb anywhere near the capacity that I am used to and that is going to be SO hard for me!! My mom has been up here helping us out that last couple weeks and we are not even to surgery/recovery yet! Please pray for her strength and health as she continues to stay with us and provide some much needed extra hands...not that other grandparents and sisters have not provided lots of help as well! We could all use prayer for strength and good health the next couple weeks. I am becoming more and more useless around here and am just trying to hang on until surgery.

As for Caleb, he continues to be a bright light in our day around here! He smiles and coos at us all the time. If he is not getting enough attention, he will let you know and as soon as you come up to him and say something/give him attention, he immediately smiles and coos. Little stinker. :) He has us wrapped around his little finger already!!

Caleb is starting to roll over from tummy to back and is strengthening those legs as well. He currently weighs 13 lbs. 5 oz. and continues to do well through all of his check ups, including the cardiologist. His oxygen level remains to stay around the mid-80s, so here's hoping they will stay there for a couple more months. He will need his next heart surgery once his oxygen gets down into the 70s. We do not look forward to that day.