My 3 month photo shoot

Hello everyone. I would like to share some of my 3 month pictures that my friend Kristi took after the Buddy Walk on September 7th. She does a great job don't you think?

Here they are:

By the way, we survived our first night all on our own without the help of nurses and monitors. I managed to keep my oxygen tube in my noise for most of the night even though I have to admit that I try to pull those silly things out often when I'm awake. We all slept fairly well and had a good nap this morning after my breakfast. I think we are all starting to catch up on much needed rest. Mom and Dad gave me a bath around noon and it looks like my incision is healing very nicely already. I can't believe it's only been just a week since I was just out of surgery because it feels more like a month. Thanks again for all of your prayers and support and I hope that you enjoyed the pictures above.

Blog at ya later,
Lydia

Day 7, Got to go HOME!

So as the title for this post says I am home now but let me catch you up on the last few days.

The last time I updated things I was awaiting the results of an EKG test for the conduction thing that was seen in the last EKG. Well, this was just a miss measurement and was determined not to be a problem. Yippy! We all were very glad to hear these good results.

Another thing that I left you with on the last post was that I was waiting to get my second chest tube out after the x-rays were taken. Unfortunately they wanted to leave the tubes in on Day 5 (Sunday) for a little longer to see if any more drainage was going to come out. They ended up not taking the tube out until Monday late morning. I have lots to say about Monday in just a bit.

Later on Sunday afternoon after another thrilling victory by the Broncos, I had some visits from some of my friends. Darin, Ali and their boy Sam stopped by and brought us some nice flowers for our room. Later, my friends Paul and Heather stopped by and got us dinner. They also told us that they picked a date for their wedding. It was good to hear about stuff going on in the outside world.

Mom holds me up so I can watch the Broncos game.

Now for Monday, that was quite a day. If I were to put a title for Monday it would have been "a bad case of the Monday's". I had one procedure after another for what seemed to be all day. None of the procedures were fun at all. As we were all sleeping at ~8AM there was a knock on the door and it's the echocardiogram technician ready to do a 45minute long look at my heart so that the doctors could see if the repair was successful and how my heart was doing. I did okay with this test because I pretty slept during the whole thing but then started to get very hungry with about 15minutes left. I think Mom and Dad slept a little bit during this time as well while they were holding me still. Without any time to breath the lab tech game up to take me down for an x-ray on my chest. The x-ray test required me to have my arms pulled all the way above my head, not the best thing to do after open heart surgery I might add. I also had the last chest tube and pacer wires pulled out after the x-ray results showed no more fluid in my chest cavity. They gave me Morphine prior to the pull but I think they actually just gave me sugar water because I was not happy at all, and for quite some time. I also had a failed attempt at getting a blood draw via a heel prick (two pricks actually) even though my parents warned the nurse that I have not had successful heel pricks in the past. Later they had to find some place left unpoked on my little body to poke me for a vein draw for the blood test. Again, this was not fun but at least it only lasted a minute or two instead of the 20 minutes for the failed heel pricks. The new formula has also caused me to be a little more backed up then I usually am and needed a suppository to help move things along. A necessary evil that ended up doing the job, and quite well as a matter of fact. A group of doctors stopped by to discuss the results from the echo that was done early in the morning. They noticed that the pressure was a little bit high in my right ventricular side and as such I would need to stay on oxygen for a little while after going home. With all of the possible outcomes with such an involved surgery we will take this. I don't like having the little tubes up my nose but we'll see how that goes over the next few weeks. After all of the stress and business that went on during the day we all slept very well that night.

Man, Monday was a long day!

I needed a swing to help calm down after my blood draw.

Tuesday Day 7. We all woke up feeling a little better about the day ahead. We didn't know that we were going to be discharged from the hospital for sure but there were a few hints from a few nurses and doctors the day before. I just thought they saw that we were all a bit down and thought this may make us feel a bit better. Mom and Dad prayed that we could all have the strength to make it through how ever many more days that we needed to be there and we took on the day with a renewed energy.

Our energy was tested pretty early on when I had to go down to get another chest x-ray. Dad helped me with my arms and I did very well. I stretched my arms way above my head and did everything they needed without one little peep. I knew it might be the last one and just got er' done. Later the doctors told us that the x-rays looked good and that we could go home.

We got set up with oxygen from the hospital and a referral for a gas company near our home. We were given prescriptions for the medicine that I needed and had one last discussion with the doctors and the nurses. We were free to go. I thanked them all for helping me to be able to live a more active and longer life.

We are out of here. Thanks doc's!

I'm wearing an outfit home that I got from one of my Mom coworkers Joey. It goes pretty well with the quilt on my bed don't you think? By the way, we got to take the quilt home as a "parting gift" from some volunteers at the hospital.

It's great to be home and to see my pal Boscoe. My friend Leah and her son stopped by with a wonderful dinner. It was perfect timing as we had just got settled in and realized that we were starving. It was a very nice gesture and we really appreciated it. We have such wonderful and supportive friends. Now that we are home Mom and Dad have to figure out how to take care of me without the aid of the nurses. I think they will do fine even though they may be a little scared. They have become use to looking at the monitors to see if my oxygen tubes are still in and now I just have to try and not pull them out when they tickle my nose. Needless to say we have a bit of adjusting to do with the oxygen but what a big step and what a relief it is to be home.

I'm telling Mom how glad I am to be home.

Thanks everyone for your prayers and thoughts over the last week. Mom, Dad and I all felt it and God gave us the strength to get through it and come out on the other side ready to take on the next challenges that will come.

We cannot wait to go to sleep in our own beds. I can hear it calling to me now. Goodnight everyone.

Love,
Lydia

Day 3PM "The speed bump", Day 4 and Day 5AM

Sorry that I have not been able to keep you all updated on my status for the last two days but on Friday afternoon (Day 3) I hit a little bump in the road on my way to a healthy and speedy recovery.

The bump in the road was that one of my Lymphnode vessels was knicked during the surgery and as such I was leaking the fat from my milk into my chest cavity. The doctors were glad that they detected it as soon as they did and I am now on a special low fat formula and will be for anywhere from 4 to 10 weeks. I sure miss the good milk that my Mom makes for me. Dad kids with me that I am on the ultra slimfast diet. This is such a change for me since my goal up to surgery was to get as big as I could and now I'm on this fat free formula. I quess that's just how it goes sometimes and hopefully the little micro leak will heal soon and I can get back to my favorite food of choice.

Dad comforts me.
So I stayed in the CICU (Intensive Care) on Friday night so that the nurses could see if the special formula would help to clear things up. Friday night was a big night because my Mom got to hold me for a little bit and my Aunt Lauren and Uncle Jason stopped by to visit. It was not for very long but it was sooo nice to be held and to see my Aunt and Uncle. On Saturday AM the nurses and doctors were happy with the progress and felt that they could remove a few tubes. This was not a fun thing but it meant that I was close to moving out of intensive care and on to progressive care.

My Aunt and Uncle visit while I'm held by Mom.So on Saturday afternoon we made the big move up to the 9th floor where the CPCU (Cardiac Progressive Care Unit) is. I still had the right chest drainage tube in and I'm still on oxygen to keep my blood saturation levels up. The good news is that by being up on the 9th floor I don't have continual IV drips going and it's nice and quiet in our own private room. They allow us to have more visitors on the 9th floor - no more having to rotate to get everyone in. We are also able to all sleep in the same room at night which is very nice. On Saturday night my Mom and Dad got to hold me for a little bit longer than she did on Friday night. It was very soothing to be back in the arms of my parents. I think my parents liked it a little bit as well.

Dad holds me while Mom prepares my little nest in bed.
I ate well during the night and we all got some good rest. Sunday AM my G-ma and G-pa stopped by on their way back to Iowa. It was extreemly nice to have them around. It really meant a lot to me, my Mom and my Dad.

After I had my morning feeding I got to go for a little ride in my super sweet Radio Flyer wagon down to the chest x-ray lab. They want to look at my chest cavity to see if they can get this last chest tube out of me. Once the tube is out I will be able to be more mobile and can go on a few more wagon rides around the CPCU.

Hanging out in my cool red wagon.

I still have a few more tests to do today. One of these is another EKG to measure my hearts electrical workings. I would appreciate your prayers since the doctors want to do this test since there was a little conduction glitch that they saw in the last EKG that may need special attention and treatments. They have not seen anything in the continual monitoring of my heart beat that would suggest that anything is wrong. One doctor said that the previous EKG could be a miss reading and they want to run this EKG again to make sure that it's not a real problem. Thanks for you prayers that my heart does not have a conduction problem.

I must head back to bed to get some rest. I will need it if they pull more tubes out today. I feel like I have one foot out of this place and I'm that much closer to going home and completing my recovery.

Hello everyone! I feel better.

I love you all very much and hope to see you soon,
Lydia

Surgery: Days 1-3

Here are some pictures of me at Childrens Hospital over the last few days:

Friday AM in Cardiac Intensive Care Unit (CICU). Check out my sweet zipper, I bet you wish you had one too.

Thursday PM in the CICU with Mom comforting me.

More comforting from Mom in my big girl crib. I needed more comforting because getting off of the ventilator tube was very traumatic.

All together in the pre-op room before I headed off to surgery on Wednesday at 8AM.
The night before surgery. Here I am getting one of my sanitizing baths. This is my pre-zipper belly picture.

Hey all,

I'm still not that "with it" but I'll try to get you all up to speed on what's going on with me.

So things seems to be progressing nicely for me... when the Dr's and Nurses look me over, they usually smile at me - I'm not terribly impressed with them (considering the circumstances) - so I don't grace them with my illuminous smile.

Today, my goals are to get my drainage tubes taken out from my chest and to eat more of mom's breastmilk and to be able to have Mom and Dad hold me. They also want to try to get me off of the supplemental oxygen, but that may take a little while.

Thanks for keeping up on my progress and for continued prayers for a healthy and speedy recovery.

Surgery Day Complete

It was a successful day and we are very happy.

I'll start out this little message, but I'm not feeling up to too much activity tonight, so Mom will fill you in on the details for today:

Lydia has been such a trooper for the last two days of events revolving around surgery. Yesterday she had blood tests, an echocardiogram, an ECG and she was calm and alert during them all - even smiling during some of the stuff. Those tests/procedures from yesterday all proved that Lydia was healthy enough to undergo surgery today. That was a huge answer to our prayers and made all of ours and Lydia's hard work worthwile.

However, this also meant that today was, in fact, the big day!! It all started at 6AM when we had to be at the hospital. Grandmas and Grandpas and our associate pastor from Arvada Covenant Church were all in attendance before the surgery to send up some prayers before we handed Lydia over into the skilled hands of the OR staff. It was very hard, but we knew it was inevitable and that it was for the best.

After hours of updates from nurses inside the operating room, they were finally able to tell us that everything had gone well and surgery was a success at about 1:30PM. It took a few hours after the final stitches before we got a chance to see Lydia (they let us in at about 4:00). She looked so much better than we had expected - we prepared for the worst and were pleasantly surprised. However, we're not sure that we will subject you to those pictures... we'll start posting some of those as the days progress and Lydia becomes more responsive and as tubes and dressings are removed.

Although everything was satisfactory on the surgery end of things, we're still not totally in the clear. Lydia will be monitored closely for the next few days to make sure her little heart takes completely to the new set-up.

Your prayers and good thoughts were definitely felt yesterday and today but still welcome more for the days to come.

We'll keep you posted... but as for now, we're headed up to say good night to our little trooper.

Thanks again to all of you!

My first boo-boo

So last night I was getting my weekly manicure from Dad and there was an incident. Dad usually does a good job clipping my nails but this time he got a little skin with the nail on my left thumb. Needless to say I was not a happy camper and Dad felt pretty bad as you can see.

Dad and I are sad about this little situation.

The up side was that I got to get a pretty "cool" field dressing even though it did not really warrant such a bandage. The "big" bandage did make me feel a little bit better.

My super cool field dressing.

It was also nice that my buddy Boscoe was there to comfort me along with Mom and Dad.

Me and my pal Boscoe.

I guess it was good to have a little prick on my finger since I start my pre-operation stuff tomorrow at the clininc with a chest x-ray and a blood draw. I will then have the weekend to recover before I have to do another blood test and an echocardiogram on Tuesday next week. Mom, Dad and I are going to get a good deal of rest and relaxation in this weekend in preparation for next week's activities. Thanks for your continued prayers for the upcoming surgery.

The Buddy Walk (and other exciting events)!

Well, everyone, it seems that I've been preoccupied with eating, sleeping, and playing and have forgotten to update you all in the last couple weeks... I just wanted you all to process all the old information for awhile before overwhelming you with all the new exciting stuff.

Last week Friday Mom and Dad went to a birthday party for our friend Molly, but I could not go. So, Mom and Dad got me a babysitter. I was a little scared of being with a stranger, but mom assured me that Brittany was really nice and would play with me and continue to feed me - I would not go hungry. Mom was right - as always!! Hopefully Mom and Dad will go away again sometime and Brittany can come and play again.

On Labor Day, my mom and dad took some time to labor around the house while I rewarded their hard work that night with a full-fledged giggle!! Mom was so excited that she had to call grandma and my aunts to tell them about it. I haven't rewarded them with flashing one of my heart-melting grins for the camera though... I'm saving that for when they really deserve it - until then I just smile whenever that camera is not around.

This was rare catch for Mom!

I missed my cousin Ethan's birthday party on Labor Day - hopefully next year, when I'm not getting ready for heart surgery, I can party with the rest of the family. But I hear Ethan had a really great day.

My Occupational Therapist is very excited about my progress with interacting with my parents as well as picking my head up when I lay on my tummy. She also thinks it's great that I like to look at that other baby in my crib... who can blame me, she's really cute!

I think Dad is pretty funny and sometimes I like to try to grab his chin.

There's that other baby... I didn't know I was going to have to share my bed!

Yesterday was a gem of a day. It was the 12th annual Buddy Walk in Denver (of course, this was my first annual). The Buddy Walk is an event set up to raise money for the Mile High Down Syndrome Association so that they can provide support groups, activities, and events for kids like me and for their families. We met a lot of cool people who have experienced a lot of the things that I might face in the years to come. We also met another little girl names Ava who is 3 days younger than me and will be having heart surgery this week Thursday - we hope she will be out of the hospital by the time we get there for my surgery on Wednesday next week, but if not, we'll be sure to visit with them.

Here's a picture of Team Lil' Lydia for the Buddy Walk

Here's a picture of Team Lil' Lydia in action around the lake.

I had 24 people walking with me as part of my team. There were about 125 teams all together and about 2500 people. We finished in the top 15 of teams for our fund raising efforts - we felt like that was pretty good, but my dad won't accept anything less than being in the top 10 for next year... hold onto your wallets everyone!! My auntie Julie came all the way from Sioux Center, IA to walk with us and brought three of her friends with her - I think she likes me a little bit, which is good because I like her just a little bit too! My team also decorated bandannas that said "Team Lil' Lydia" on them and Mom, Dad and Julie decorated their Buddy Walk T-shirts with puffy paint. Mom and Dad also made buttons for our team to wear with my picture on it. I think we'll be doing the Buddy Walk for many years to come.

This was my chariot for the walk - I got to ride in style while everyone else huffed it out.

This is how I spent most of the walk... my chariot was quite comfy.

After the walk, we had lunch at the park with all the other 'Buddies' and then invited our team to our house for some volleyball and an evening barbecue... it was a beautiful day! I had another photo shoot with Kristi while everyone else played volleyball, so I'll be sharing those with you soon.

This is Uncle Jason (not sure how he's going to play volleyball with a burger in his hand), Zach, Paul and Todd doing volleyball poses by the net in the backyard. We really did play volleyball, but the action shots were hard to come by.

Yesterday was a last hoorah for the next couple of weeks as Mom, Dad and I are on lock down this week to prepare for surgery - we don't want to come down with anything and have to postpone the big day. Mom and Dad are pretty apprehensive about Wednesday next week, but they're told that it will make a world of difference for me.... even though I feel and act pretty well right now! I'm not nearly as worried about it as my parents are though because I know that I'll bounce back really fast and that God is going to help my surgeon in the operating room. Besides, this way Aunt Julie and I will have matching scars on our chests - too cool!

Well, that's about all for now. I'm not sure if I'll blog before my surgery day, but if not, I'll be keeping you all posted on how it goes. Please keep me and my parents in your prayers though for next Wednesday the 17th - we'll really appreciate it!

Love you all,
Lydia