A Busy Boy

Hello Everyone,

I hope you all had a nice summer. Our summer has been busy, but fun. I have learned to Army crawl and am into everything. My mommy and daddy are excited to see be doing so well, but they seem to have forgotten what it's like having a baby crawling around the house. So far I have done well without my oxygen and feeding tube. The doctors are happy with my progress and feel I am growing well. I still have physical and occupational therapy every week. My mommy, daddy, and my sissies enjoying playing with me and we have been having a lot of fun together as a family. We are getting ready as this winter I will be stuck back in doors away from people and from germs. Since my immune system is very week I have to be very careful not to get sick.

I would also like to thank my new friends at 8leggedgecko for all they are doing for my family. If you are visiting this site from theirs you can track my story back to my first surgery just over a year ago.

Please remember to say a prayer for me.

Love, Drew and Family

A visit with Family

Hello Everyone,

I hope you are all doing well. Life has been good for me. Recently me and my mommy and my daddy and my sissy's drove to Torrington, WY. We went there to see my Great Grandma Veneda, along with a few of my aunt's, uncle's, and cousins. It was great to get away as a family and this was the first time many of them got to meet me. I really enjoyed meeting some of the family that I had not had the chance to meet. I do miss them and wish we would have had more time to spend with them.

Right now things are going well with me. Once we get back to cold a flu season I will be stuck in doors again as we try to keep the germs away from me. Hopefully I will be able to stay healthy and germ free.

Please remember to say a prayer for me.

Love, Baby Drew and Family

One boy and his Special Day

Hello everyone,

I am sorry it has been so long since I have posted. Things have been going very well. I have been off oxygen for about 2 months and off my feeding tube for about a month and a half. As my mommy and daddy say, I'm tubeless. Yay!

On July 10th we celebrated my first birthday. Me, my mommy, and my daddy all had a cold, so we didn't do much. We waited until the 18th and then we had my party. My mommy and daddy are so happy to celebrate my first year and all my accomplishments. They love me so much and are so very thankful for all the blessings God has given us.

Thank you to all my friends out there who continue to follow my story and pray for me. I will work on getting better at updating my blog on a more regular basis.

Please remember to say a prayer for me.

Love, Baby Drew and Family

Enjoying Home

Hello,

Sorry I haven't posted in a little while. Me and my mommy and daddy are enjoying being home and spending time together as a family. My chest is still a little sore and it hurts when I cough, sneeze, get upset, or roll over to far. It usually takes 6 weeks to heal, but hopefully the soreness will go away soon.

As far as long term I should not have to have any further surgeries for about 2-3 years. In a year they might want me to go back for a heart cauterization to ensure my pressure levels are good and my heart is working well. Other than that I will be see my cardiologist weekly for check up's and echocardiograms.

Thank you for all your love, prayers, and support. It truly means a lot to my family and I.

Please remember to say a prayer for me.

Love, Drew and Family

New Journey: Awaiting Discharge

Hello,

I had a great night which means I will be discharged today. At the moment we are not sure when as these things can take awhile. We will stay in Spokane tonight and then finish our trip home tomorrow. Thank you for your thoughts and prayers, they mean so much to me and my mommy and daddy. Hopefully we will have a good trip home and I will continue to do well.

I will make sure to keep blogging and posting photos so everyone can watch me grow. My mommy and daddy are excited that I get a few years off before my next surgery.

Please remember to say a prayer for me.

Love, Drew and Family

New Journey: Good News

Hello,

Today we received some good news. As long as I tolerate my feeds well I will be discharged tomorrow, yay. My mommy and daddy are so proud of how well I have done and so very thankful that this trip was much easier than the last. So we are all praying that my feeding goes well and that tomorrow will be the day.

Thank you so much for all your prayers, they really have made a difference. My mommy and daddy are very thankful for them as well.

Please remember to say a prayer for me.

Love, Drew and Family

New Journey: On the Floor

Hello,

Today i made it down to the floor. My mommy and daddy are so very proud of me and so very thankful that I am doing so well. The Doctors are working on getting my feeding routine back on track and seeing if they can wean off my oxygen. They think that I will be able to go home within the next couple of days. I really hope so, I miss my sisters so very much.

Please remember to say a prayer for me.

Love, Drew and Family

New Journey: Day to Relax and Play

Hello,

There is no more c-pap and no more chest tube. So today has been a good day. I have been sitting up and playing with my toys and spending time with my mommy and daddy. Hopefully things will keep looking better and I will get to go home soon. My mommy and daddy are so very thankful that the Lord has watched over me and given me the strength I need.

Please remember to say a prayer for me.

Love, Drew and Family

New Journey: Snuggle Time

Hello,

My night got even better because I got to snuggle with my mommy and daddy. I know they love to hold me and I love being held. My mommy and daddy were so very happy and I enjoyed my brief time away from the bed. It is not easy as I still am connected to several wires and have a drain tube in my chest. Hopefully my x-ray will look good tomorrow and I can get off of c-pap and hopefully have my drain tube taken out.

Please remember to say a prayer for me.

Love, Drew and Family

New Journey: Better Day

Hello,

So far today has been a pretty good day. My fever is gone and my left lung looks much better. The only problem is now a small portion of my right lung is collapsed. So today they will leave me on c-pap to see what my x-ray looks like in the morning.

My mommy and daddy got to see me awake and playing with my toys today. There were so happy. They get so excited to see me open my eyes, smile, and play.

Hopefully tomorrow both my lungs will look good and they can get me off of c-pap and onto the floor.

Please remember to say a prayer for me.

Love, Drew and Family

New Journey: Bumps in the Road

Hello,

I have had a rough day today. I have been running a 104 fever. My x-rays this morning showed that I am retaining a lot of fluid and my charts also show I am fluid positive. They also showed I have a lot of mucus build up in my lungs and that I have a partially collapsed left lung. Do to this they have put me back on the c-pap machine and are hoping this does the trick and they don't have to put the breathing tube back. My mommy and daddy are very worried for me and are praying the Lord continues to give me strength.

Right now we are in a holding pattern to see if the c-pap will help re inflate my lung and if this makes my fever go away. They are also running cultures to see if I have an infection that needs to be treated. I will keep everyone posted on how things are looking.

Please remember to say a prayer for me.

Love, Drew and Family

New Journey: Weaning

Hello,

Today things have been pretty good, except that they just poked and poked me trying to get a new IV in and no luck. They will have to try again later.

Today they are working on weaning down my heart medicine and my oxygen with hopes that I will be off both tomorrow. If all goes well they will likely transfer me to the floor tomorrow. My mommy and daddy are so very proud of me and so very thankful that the Lord has watched over me and given me strength. We are all very excited as the floor is one step closer to home.

Please remember to say a prayer for me.

Love, Drew and Family

New Journey: No more Breathing Tube

Hello,

Today has been a good day. The surgeon said that the surgery went very well. Then the doctors in the ICU thought I was doing so well that they decided to extubate me and now I have no more breathing tube or ventilator. They will wean my oxygen overnight and then tomorrow they will work on weaning my morphine and milrinone. I have been doing so well that they thing I might be able to go to the floor tomorrow.

After the way things went last time this is very big news. My mommy and daddy are so very excited and so very proud of me. Tomorrow I should be able to give them lots of loves. They want me to tell everyone thank you for all your thoughts, kind words, gifts, and prayers. It truly means so very much to my family and I.

Please remember to say a prayer for me.

Love, Drew and Family

New Journey: On By-Pass Machine

Hello,

They just put me on the heart and lung by-pass machine. I should be on this for about an hour.

Please remember to say a prayer for me.

Love, Drew and Family

New Journey: Surgery has begun

Hello,

My surgery has just begun and should last about 4 hours. I will let everyone know when I am out and in the ICU.

Please remember to say a prayer for me.

Love,

Drew and Family

New Journey: Off to Surgery

Hello,

At 7:30 this morning they took me back to the OR. It will take between an hour or two to prep and then 4 hour open heart surgery. I will let everyone know when they start the surgery and then when I am out and in the ICU.

Please remember to say a prayer for me.

Love, Drew and Family

New Journey: Tomorrow is the Big Day

Hello,

I have enjoyed a nice weekend with my family. Today my sisters went back to Kalispell with my uncle Jon and aunt Mimi. Then me and my mommy and daddy spent 7 hours at the hospital for my pre-surgery appointments. Now we are just spending some time together. My mommy and daddy are very worried because I am a high risk case. We all went through so much last time and are all praying that this time everything goes nice and smooth. I will keep everyone updated on how things are going.

Please remember to say a prayer for me.

Love, Drew and Family

New Journey: Day Downtown

Hello,

I had a wonderful day with my family today. My mommy and daddy have been really worried, so a day away from it all is just what we needed. Me, my mommy, my daddy, my sisters, my aunt and uncle headed downtown to the Seattle Center where they had a fair going on. Here are a few pictures of our day. The first one is me just after getting my hair washed, as you can see it is a little crazy. The next is me riding the carousel.

Please remember to say a prayer for me.

Love, Drew and Family

New Journey: Heart Cauterization

Hello,

Today I had my heart cauterization. The doctor told my mommy and daddy that it went well and that my pressure levels look good. What this means is that they can do my surgery on Tuesday. However, there were a couple of things the doctor reviewed with my mommy and daddy. First it looks like there is a narrowing of my pulmonary artery on the right side. The surgeon did review and feels that he can fix this when he is in there on Tuesday. Then he let me mommy and daddy know that due to my past issues with my heart and lungs and spending 18 days on life support after the first surgery does make this one more risky. I trust in the Lord and believe that he will watch over me and give me the strength I need to come through this surgery stronger than before.

I will spend this weekend enjoying time with my family. On Monday my sisters go back to Kalispell with my aunt Mimi and uncle Jon. I also have all my presurgery appointments on Monday, so it will be a very busy day.

Please remember to say a prayer for me.

Love, Baby Drew and Family

Pictures for you

Hello, here are some pictures of me. I hope you enjoy. I will add another post to update you of my journey to Seattle.

Please remember to say a prayer for me.

Love, Baby Drew and Family

Now comes Da Da

Now my daddy is happy. I now say da da! Of course my mommy reminds him that the ma ma came first.

My next trip to Seattle is coming very quickly. We will leave here on the 22nd of this month and if all my tests go well my next surgery will be the 28th. My mommy and daddy are very nervous. They cannot believe how quickly this came. Everyone has been saying a lot of prayers for me and that really means a lot to both me and my family. As our trip nears I will be blogging more to keep everyone updated of the next part to our journey.

Please remember to say a pray for me.

Love, Drew and Family

My First Words

Yesterday I had my first word: ma ma. This made my mommy very excited. She has been working with me on saying ma ma, while my dad has been trying to get me to say da da.

I have been feeling much better and seem to be pretty much over my illness. Now the trick is to keep me from getting sick again before my surgery. This could be tricky, but hopefully will work out well. I hope you enjoy the photo of me.

So far everything else is going well.

Please remember to say a prayer for me.

Love, Drew and Family

Surgery Date

It is official, we have a date for my next surgery. On April 23rd we will travel to Seattle. Then on the 24th I will have a heart cauterization to determine the pressure level in my lungs. On the 27th the Doctors will review my case and if everything looks good I will have surgery on the 28th. It is nice to know a date, but my mommy and daddy are very scared. They are worried and have been saying a lot of prayers for me. I know the strength of the Lord will be with me and that he will keep me strong.

There is another little girl, Gracie, who has a bad heart and needs lots of prayers. You can visit her at: http://thegledhillfamily.blogspot.com/

We borrowed a heart poem from her website, I hope you enjoy:

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. He asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy and daddy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

Please remember to say a prayer for me.

Love, Drew and Family

Handsome boy

Hello everyone. Sorry it has been so long. I hope everyone is doing well. My mommy and daddy have found out that my next surgery will be in late April or early May. First they will do a heart cauterization to make sure the pressure in my lungs is low enough so that they can do the surgery. Then if that looks good they will do a procedure called the Glenn. As you can imagine, my mommy and daddy are nervous after what happened with the first surgery. Everyone is praying that this one goes much smoother and that I will not need to use life support this time.

I am still stuck in doors and away from people anxiously awaiting the end of cold and flu season so I can go visit all of my friends. My mommy and daddy are ready to start taking me to church and to see all the wonderful people who have helped them along our journey.

Please remember to say a prayer for me.

Love, Drew and Family

Enjoying my family

Hello, sorry it has been so long since my last post. I have just been enjoying my family. I do have a big kid crib moved into my mommy and daddy's room now. They had to completely rearrange their room to fit my big crib in. I have been rolling over from front to back and back to front. The doctors also ok'd my mommy and daddy to feed me baby food. So, for the last week I have been eating baby food along with my formula.

Tomorrow the doctors will discuss my case and determine the next step. On Thursday when I have my cardiologist appointment they will tell my mommy and daddy what will be happening. I will likely be going to Seattle at least once if not twice within the next 3 to 4 months.

Please remember to say a prayer for me.

Love, Drew and Family