A Healthy Heart Makes for a Happy Mom!

Today I took Reid to his annual check up for his heart.... he has had two heart surgeries in his little 4 year old life. One at 7 1/2 months and the other just before he turned 2.
The last surgery was to fix his leaking mitral valve...it had been repaired with the original surgery along with 2 holes in his heart but the valve was continuing to leak moderate to severely so needed another repair. For those of you that followed us through that repair you may remember that it was a bit touch and go and the threat loomed that a third surgery would be necessary to replace that valve altogether since the leakage continued to be severe shortly after surgery....
However, his last echocardiogram a year ago looked good with only mild to moderate amounts of mitral valve regurgitation and we were given the ok to now see the cardiologist once a year. Well, our year was up and for some reason I was particularly nervous this morning as I watched the technician measure different things on the screen during the echocardiogram and as I saw red and blue pumping through his valves, I worried that what she was seeing and measuring was indicating too much of a blood flow in the wrong direction. It's hard watching something and not knowing what the heck you are looking at... The only types of ultrasounds I like to look at are the ones where your Dr. tells you ... "See that little sac there, that's your baby growing big and strong" ....or "It looks like you are having a boy" lol!
...I held my breath as the Dr. came in to report out the results, waiting for a ball to drop, but the only thing that was dropped were the words, "I am pleasantly surprised that this echo actually looks even better than the one last year with now only trace to mild amounts of leakage...AND I am really pleased with his growth as Reid went from the 25-50th percentile on the Down syndrome growth chart to the 50-75th percentile". Could you hear me audibly exhale?.. umm, yes I do believe you could!! Yahooo... such good, good news!
So, needless to say a healthy heart makes for a happy mom today!!

I Can't Believe It's Been A Year... Heart Update

I can hardly believe it was a year ago today that our littlest guy came out of the operating room looking like this.... For those new to our blog, this was Reid's second open heart surgery. The first was to fix an ASD, a VSD, and his mitral valve when he was 7 months old. The second surgery, just before his 2nd birthday, was to further repair the mitral valve which had some moderate to severe leakage. The surgery seemed a success at first but then things went a little south and it was thought he would need to go back into the operating room for surgery # three to replace the valve altogether with a metal one before he would be released...which quite possibly could have caused more complications and more surgeries down the road. However, long story short (or read here for posts from that time) over a course of several hand wringing days his swelling and excess fluid had dissipated and they decided to send us home to see if we could get a few more years out of his own valve before needing to completely replace it. But............ drumroll please...........I have not updated on his heart (shame on me) until now and as of last month he is now completely heart medicine FREE......AND his last echo showed a near perfect heart. The cardiologist said that if he keeps on like this there will not be a need for another surgery. Makes this mom's own heart very, very happy!!

Reid's surgery happened to be scheduled on Toby's 40th birthday.....which means TODAY is his birthday.....Happy Birthday Toby! We love you!

Below are pictures of what his little "zipper" looks like today, Reid in his "I did it" shirt because it just seems appropriate, and then him just being his little hambone self!

Thank you for checking in on our little Reid!

We have been loving being home from the hospital!!! I believe the first 5 days we literally stayed in bed and watched movies all day just trying to get caught up on lost sleep. It has been so nice to snuggle with our littlest guy without all the wires and beeping sounds going off at all hours!

Thank you to our faithful family and friends for checking in regularly on our little heart patient! Your visits, comments, words of encouragement, and prayers meant more to us than any of you will ever know! Truly...we are speechless and humbled by the love we felt during that time with Reid in the hospital!

Reid's follow up appointments have gone well. He will have another echocardiogram in a month to see how things are managing, but he seems to be recovering well. Although....I rushed him to the pediatrician today in a fluster because he seemed out of sorts....diagnosis from the doctor... "Well, honey I think he's just a little gassy!". Red faced..."Ok, thank you very much we'll be on our way now"... :) Gassy I can handle, it's the leaky valves that throw me over the edge!

Below are a few pictures from the hospital I never got around to posting. The one on the top cracks me up because if they had any reservations as to whether to release him from the hospital I think this guy was going to make a run for it..whether they liked it or not!

Reid got a chance to pet one of the volunteer therapy dogs.

Our prayers were answered....Option #1 it is!!!!!!!!!!!!!!!!!

This picture is Reid calling his brother to say, "Guess what "Da" I'm coming home, I don't need another surgery after all!!" 

Our prayers were answered...miracles do happen! We got option #1 after all! The team of doctors met today in regards to how they should proceed with Reid's care. After reviewing yet another echo performed yesterday, the team was now in 100% agreement that they felt the echo looked very similar to the one in the operating room, and called the surgery successful once again. It is not a complete perfect fix, as with any surgery when you close certain things up and tighten valves it often reveals weaknesses in other areas, which is what was the case here with Reid's heart surgery. But, today "The Foremans"  heard the words we had prayed so earnestly for..."Your discharge papers are being processed."

We are so thrilled...we hardly know what to do with ourselves. Actually number one on our list is to catch up on sleep...so we are snuggling our boys in with us to watch a movie and to call it a good day, a fantastic day...a day of blessings! Thank you so much for all of your prayers, thoughts, encouragement, and care for our little 2 foot 2 inch charmer! And charmer he was...as we pushed the metal button on the wall to open the PICU doors and walk on through for hopefully the last time, Reid was waving back at a group of staff who were waving right back. He melted quite a few hearts there as his mended. :)

I emailed and asked...Has anyone's child had to have a heart valve replaced?

Sunday night after we had been given the news that it looked like Reid would need to head back into surgery in the next few days I was so burdened. I couldn't sleep that night so I stayed up and sent a mass email out to about 100 women who live in the general LA/Orange County area who also have children with Down syndrome, to see if anyone else's child had gone through this. The next time I checked my email, the email below was in my inbox and I had the chills...

Cheri,

My son Isaac had a mitral valve repair at 2.5 years with Dr. Starnes at Childrens LA. Pre-surgery, the surgeon and cardiologists said that the fix was easy and a procedure that they have done millions of times. Post-surgery, everyone thought it was a success. A week after we went home and at a follow up echo with the cardiologist, we were told too that the leak had been greater than and in even more places than prior to surgery. It would seem that the surgery did MORE damage than prior to surgery. The echo was sent to Dr. Starnes and he thought some sutures had pulled through. We asked him given his expertise and experience, how often do sutures pull through. He said almost never. We were told we'll need another surgery to try to go at it again- without much confidence from the surgeon as he relayed the best outcome should have been the first round. We were told to be thinking about an artificial valve for the 3rd round if the 2nd round was unsuccessful.

While we were considering our options between a 2nd surgery to re-do the 1st one and a possible 3rd for either an artificial valve or a pig valve, we monitored the leakage or any enlargement of the chambers with a weekly echo. About 2 months after the surgery, the cardiologist asked me the weirdest question in the middle of an echo. He said "Have you been praying?" The truth was I never prayed in my 31 years of life until I was faced with the prospects of multiple surgeries for my son. I thought if science was not doing it for us, the only thing left for me to do for my child was ask help from the supernatural. I have never prayed with more sincerety than I had the 2 months following Isaac's surgery. The echo that day showed a much diminished leakage than before. We were told to come back on a monthly basis, then on a 6 month basis, now on an every 3 years basis. Isaac just turned 9 yesterday- its been 6.5 years and his heart is doing great.

I had never been religious nor am I today a fervant believer. But I do believe I was heard, that there is a connection that was absent prior, and that I was blessed with a miracle. The doctors say that the post surgery swelling that makes the leakage seem worse might just takes 2 months to return to normal. That could very well be the truth- and that is why I felt compelled to respond. I don't have a heart valve replacement experience to share, but I was facing the same decisions you are now and our story might be a possiblity you or your doctors have not considered. If there are signs of enlargement in any chambers, they would have to do the surgery sooner than later. But if they are not seeing signs of enlargement given the leakage, could you hold out as long as you can to give the little guy a chance to heal?

Marian

I responded back to Marian with tears down my face and asked permission to publish her story, a story that is too neat not to share. Thank you again for reaching out...your email was more encouraging then you will ever know. It reminded me that faith, even the size of a mustard seed, can move mountains! 

Reid Maddux Foreman- His namesake retires from professional baseball today

Our little Reid's full name is Reid Maddux Foreman. I write about this today because today his namesake happens to be retiring from major league baseball. The Maddux comes from baseball giant and pitcher, Greg Maddux. Both of our boys' middle names are after professional baseball pitchers, Luke's being Ryan after Nolan Ryan. Hmmm...this could have a little something to do with Toby's love of baseball and maybe a little something to do with him pitching for the Seattle Mariner's Minor League, before throwing his arm out and needing the Tommy John surgery. :)

We love baseball around here. We have found 2 incredible baseball families who also have children with Down syndrome and have each respectfully started their own amazing foundations to support and educate. Pujols Family Foundation and Team Up for Down Syndrome. If you are interested click on the names and you will be taken to their sites. These sites were some of the first we found when we first began our own search for support and education after learning of Reid's diagnosis. Actually, side note here....just coincidentally my mother-in-law was one of the labor and delivery nurses in the room when Rex Hudler's (Team Up for Down syndrome) son was born with Down syndrome. Funny, how things happen.

Quick update on our littlest baseball player's progress...We saw glimpses of hope today. Our cardiologist came in this morning, he had been off yesterday and did not get to see the echo until today. He indicated that he actually thought the echo did indeed look better than the one dictating the need to look into surgery #3. What???? Wow!!!! Not what we had been told yesterday. No doubt we were thrilled to hear that! We remain cautiously optimistic as we still need to see what the new echo shows tomorrow and then what the team decides when they meet Wednesday to discuss the possibilities. We were given hope today that my original option #1 might still be a possibility after all! Thank you for your prayers.....they are felt!!

Not the news we wanted...

Just a quick update because I am completely exhausted. We got the results of the echo and unfortunately it was not the news we were hoping for. The echo showed just about the same amount of fluid leaking from the middle of the valve. So, we now wait some more. The surgeon comes back tomorrow and I am sure we will see him then. We were told that Reid's case will be reviewed with the cardiologist team, surgical team, and some PICU doctors during their Wednesday conference to see what the next step is. Sigh.I just have to trust that the "laid back" guy you see in the picture from the previous post is going to sail right on through this, it's just going to take a little longer.

Well Look Who We Have Today... "Mr. Laid Back!!!!"

Last night we had the best nurse of all time watching over our little guy....my mom! My mom has been a nurse for, well let's just say a very long time :). Yesterday she came for a visit at the hospital and asked us if we wanted her to stay the night so both Toby and I could be home together. Mom...what a blessing, THANK YOU!! We decided to take her up on it knowing he was in the best of care. She kept a keen eye on all the nurses and knew all the right questions to ask...she even pointed out a plugged IV line. Mom, we love you!!

When we got back this morning we met up with "Mr. Laid Back" as you can see in the picture as well as "Mr. I think I'll look over the children's menu" and "Mr. I think I'll read a good book guy". He is doing really well this morning, the best he's been since the surgery. His x-ray looked super as well and they decided not to wait until Monday to do the echo cardiogram to determine our next steps....they're doing it TODAY. I am taking that as good news, we are ahead of schedule.

He said "Mama"!!!!!

Today Reid was a little more alert and just so snuggly. When I laid my head on the crib bed to be near him he lifted his arm to put over the back of my neck and we laid cheek to cheek for a long time. I just love this little guy. I was also asking him today to say all the words he knew. When I said, "say Mama".....he actually said Mama. It may have been very faint but definitely it was Mama. For those that don't know, Reid doesn't call me Mama, he calls me...gulp, "Bob". I don't know why he calls me Bob, but he does, or at least he did. But...today my little guy called me Mama....such sweet music! 

Update on our not so good news

I wanted to write an update to our last post. The plan right now is to continue Reid on diuretics to completely "dry" him out, they said this will take several days.  So, if his fluid levels are where they would like them then we can proceed with another echo cardiogram on Monday or Tuesday. This echo will tell the doctors how to proceed. We spoke with the surgeon last night and there are 3 ways this could go. If the echo comes back showing the original small leakage that was originally found in the operating room, then great, we may need to do nothing and we can get the heck out of here. If it comes back still showing the considerable sized leak in the middle of the valve as the last echo showed then we go back into the operating room to first try and fix it, and if that doesn't work than they will move on to removing and replacing it with a valve.  If we do indeed need to go back into the OR I guess the possibility of another fix is a good thing....I didn't think this was an option. But, still of course my prayer is option #1. If this is the route we get to go...Nan P. even you all the way over in Ireland will be able to hear the squealing of our tires from our car getting out of here...Rrrrrrrr.

Reid is handling all of this like such a champ. He is so sweet and dosel right now. When Luke got here this morning he asked Reid to say, "da"...that's what Reid calls Luke. Reid replied with the sweetest sounding "da" and then gave a little giggle. Here are some pictures of Reid. The top one is from today sleeping on his tummy, which we are so excited he can do now, now that the chest tube and...the oxygen up his nose are both gone, Yeah!!!!

Not so good news... specific prayer request

Okay, so we have been so excited feeling like Reid's recovery from heart surgery was going so well. But, we got the results tonight from the echo cardiogram taken earlier today....and the small amounts of blood cells they saw coming through the valve on the initial echo in the operating room is now showing a significant leak, and in a different location in the valve altogether. This is not good news. This could be because he has a lot of fluid in his chest as well as some swelling which is causing so much pressure, making the leaks present themselves. The doctors removed some of the fluid from his right side with a needle and are putting him on a diuretic drip through the night to see if this helps. They will perform another chest xray and echo in the morning to determine where we go from here. The cardiologist came in tonight and the dreaded words "possible valve replacement" were spoken. Noooooooo!!!!!!!!! This can't be happening!!! My little guy has been through so much already. I can't image him going into the operating room again. I am back on my knees for this littlest son of mine! A specific prayer request would be that by morning the excess fluid would be completely gone so they could see what we were dealing with. Actually as his mom I am praying even beyond this and praying for a miracle...praying that when they perform the echo they tell the Foreman family that they no longer see any leakage, I'd love if you joined us. I posted a picture of "the Foreman family" but little Mr. Reid is often not a fan of the camera so in addition I posted two recent pictures of him that makes me smile... Firefighter Reid!

Seeing glimpses of Reid's personality...through recovery

Reid has been so irritated during his recovery. He seems so uncomfortable and having a hard time getting into a  sound sleep. The doctors have been trying to stear away from any sedation meds for him, for fear that his breathing  would get lazy... and we absolutely do not want him back on the breathing tube as that was such a huge victory for us to have that removed so quickly. So they decided to try letting me hold him to see if he would rest more peacefully...and he did except he was still a bit squirmy and managed to wrap all his cords around himself at one point, sigh :). We are certainly giving his nurse a run for her money! 

While he was in my arms Toby and I tried talking with him and reminded him of all of his favorite things. When we mentioned bubbles....he started signing bubbles. We were so shocked because he is still so out of it, his eyes were even closed! So, we pressed on and asked him more things. He and Luke taught Reid the sign for snake (I have to look this up to see if this is the real sign or if my guys are making this up...but it is to stick your tongue out), when we said the word snake you could see him trying so hard to stick his tongue out, we saw enough to know he understood. Later in the day we tried again. One of Luke's favorite things to do is to command his brother to demonstrate karate moves. If you say "Hiya" Reid sits on the floor and lifts one leg way up over his head. This makes Luke squeal with laughter so we hear "Hiya" around our house a lot. So...though Reid was back in his crib and a little grumpy... when we said Hiya he lifted one leg....just a little. Yup, just little glimpses of our little guy's personality shining through all of this hard recovery stuff, and mom and dad are so pleased!! ..."Hiya!!!!!!" :)

We are feeling...so loved!!

Yesterday we had a surprise visitor at the hospital once Reid was out of surgery... I have mentioned on my blog before about a cardiologist who came into our lives the day Reid was born. Not only were we initially impressed with his ability to draw a diagram of our son's heart and the details of its defects upside down on a hospital paper towel (we still have that paper towel by the way, I used to carry it around with me because I always got so tongue tied trying to explain to people about Reid's heart) but more importantly he was the first person besides family to look us in our eyes and congratulate us on our son. He walked us through this new journey of a child with a heart condition and was always reassuring and encouraging. He walked us through our first heart surgery and I must say we felt Reid was in such good hands under his care. This past summer he took a position at a different hospital so we are now under different doctor. But....even though we have not seen him in months, even though he is no longer Reid's cardiologist, even though this hospital was now out of his way........he showed up to check on our Reid. How is that for care?? Dr. Loo we were so deeply touched, not only will you always be our favorite cardiologist but a friend for life.

Okay so that was yesterday....

Today....

A respiratory therapist came into our room to thank us for the turkey wraps. I told him he had the wrong family. He said, "no this is Reid's room right?" I said, "yes, but maybe they were from someone who had the last name Reid". He smiled and said, "hang on...I want to show you something". He handed me the piece of paper pictured here and tears began to run down my face...

To: NICU Nurses, especially those caring for Reid

From: The Grizzlies (on behalf of Cheri and Toby)

Please take care of our littlest cub, as well as mom, dad, and brother. (Please make sure Toby and Cheri get some food also)

Love:

The Grizzlies

I had a lump in my throat as I tried to explain to him and now 3 other nurses in our room who the Grizzlies were. I met an amazing group of moms when Luke was in preschool. Many of the boys had been in the same preschool classes for a couple of years. When Pre-K ended and everyone was going on to different schools in the area for kindergarten we decided to try and keep our boys together and bonded by registering an Adventure Guide Group through the local YMCA. The preschool our children went to was known in the neighborhood as "Teddy Bear Preschool" because it had a big wooden teddy bear out front. So, since our "teddy bears" were moving on and growing bigger we decided to graduate them to "Grizzlie Bears" hence the name, The Grizzlies, for our group. The Grizzlies along with other family and friends joined us for our local Buddy Walk in November, which is where the picture is from. Grizzlie boys and your fantastic moms... you blessed us so much today by this incredibly kind gesture!!!! And, you helped us score points with the staff...always a good thing!!

Also thank you to everyone for the prayers, comments, phone calls, emails, and home cooked meals that have been bestowed upon us by you all!!

We are feeling so loved!! THANK YOU!!!!

Big sigh of relief...surgery went well!

I haven't had a chance to update on Reid's progress yet, so much has been happening.... but HUGE sigh of relief for us as surgery went really well!!

The surgeon actually found more defects that needed to be repaired than anticipated so he took care of those issues as well as worked on the mitral valve which was leaking and the main concern. The last time Reid had this surgery in August of 2007 the Dr. actually had to create 2 valves out of 1 with the tissue that was there. One of the newly created valves was working great...but the other one was leaking so his lungs were filled with fluid. When they went in to repair the valve yesterday it had actually twisted so they fixed that and tightened up the stitching from before. However they found that the back flap of that valve did not have much material to work with. They added man made material to help construct that valve better. The initial echo cardiogram they performed while he was still in the operating room still showed some minor leakage, but in comparison to before a vast improvement! The Dr. was happy with what he saw though and felt it was extremely successful. The fabulous news about it all is that his body is not requiring much medication, he is doing most of the recovery on his own. They even took out his breathing tube last night which to me is HUGE because last go around he did not come off of it until the night of day 8. He had basically been in a coma state until that time. He is a little agitated and they are giving him morphine....I say bring it on and give some to mom too!!!!!!!

Here are some pictures of our little trooper.

Pictures from the night before surgery

First update...so far so good

It is now 11:00 and we just got our second call from the surgical nurse that Reid is now on the heart and lung bypass machine and ready for the repairs. It has been a really long morning. They wheeled Reid over to the holding room before entering surgery around 7:00 but there were some delays and they were very busy in there so Reid stayed with us until about 8:00. You could clearly see he was getting a little agitated and tired of this whole thing already, so Luke and I sang and danced for him the best we could to keep his spirits up and we were able to get a few giggles out of him. He actually finally ended up falling asleep in my arms at 8:05 and then the anaesthesiologist came and gave him something through his IV to knock him out further....what a complete blessing. It was so nice to be able to hand him over in this peaceful nature and he is none the wiser of what is happening to him...at least not yet! :)

This is not the first time we have been through this...yet somehow this time is so, so much harder on us all. I wish I could post pictures but I brought the wrong thingy ma bob to plug into the camera and computer, so I'll post pictures later. But...picture this if you will... Reid had a crib ride over to the room where they pick him up for surgery...but he was not going to sit down for this ride. He stood up the whole way holding on to the edge of the crib, he wasn't quite as flirtatious as last night...he was now too suspicious by this time and had quite a look of angelic ferociousness on his face if that is possible, but still managed to pass out waves and kisses along the way. One nurse called him, "dangerous guy" because he was standing the whole way... oh I just love my angelic, ferocious, danger guy!

Heart Surgery in the Morning...

We have been up at the hospital since 3:30 this afternoon to have Reid admitted and prepared for surgery in the morning and only now getting back home. I had this whole wonderful "The night before heart surgery..." post I was going to write, but, for now just a quick note to ask for prayer and I will write more detail later of our special moments leading up to surgery. Surgery time for Reid has been switched now to 7:30 AM. Toby decided to stay the night with Reid so I could get home and get a good night's sleep....Thanks Toby! Luke has already fallen asleep but not before telling me he was going to sleep with Reid's Blue's Clue's pajamas he found laying on the bed. He is seriously curled up with these PJ bottoms next to his cheek.

Reid was all smiles for the nurses and ever so flirtatious! We ended up in the same room we had for surgery #1 a year ago....only this time Reid was walking back and forth in his crib and flung one leg over the top trying to escape! He is such a big boy now!

We are praying for a full repair of his mitral valve and to close up a hole between his heart chambers.

Thanks for checking in on our little Reid!

Cheri and family

Celebrating One Year Post Op Today!!

TODAY WE CELEBRATE! One year ago today, August 21, 2007, our sweet little Reid underwent heart surgery. We learned the day after he was born that nearly 50% of children with Down syndrome also have a congenital heart defect...our son fell into those statistics. We were told to anticipate surgery somewhere between 6 month to a year...and for him 7 1/2 months was his time. I think my own heart stopped when I had to hand my baby over to the surgical team and retreated to pray like no other time. My husband recently added the song, He's My Son, by Mark Shultz to our play list below...and every time I hear it I well up with tears. It takes me back to the 2 weeks we stayed with him in the hospital (8 of those days he was unable to breathe on his own and kept in a very sedated state...we missed our little cooing, babbling guy!). After surgery Luke tried to comfort his baby brother by saying (in the sweetest little voice), "I'm sorry they had to cut you in half buddy...!). I am posting a picture we took of Reid's chest right after surgery and then a recent picture to show off how amazing his scar healed....I am sure this scar will be shown at many a "Show and Tell" at school in the years to come! Thank you Dr. Loo and the surgical team for taking such good care of our son! We are forever grateful for your care!