Sunday, October 31, 2010

Happy Halloween

Happy Halloween From The Baker's!

We had a great Halloween this year! After going back and forth about whether or not to take Jake out trick or treating with us, we decided to go ahead take him. We went trick or treating in my parents neighborhood which is not very crowded and I had decided he would stay in his stroller and I would not take him right up to anyone. That was the plan anyway...

Jake like usual showed us he had his own plans. He fussed so I took him out of the stroller to carry him and before we hit the second house he was fast asleep on my shoulder. So I brought him back to my mom's house and put him to bed while we took Aidan trick-or-treating.

It was so fun watching Aidan run from house to house. The previous years we would have to drag him up to the doors. This year he was in full trick-or-treat gear. He couldn't wait to go to each house. Of course he had to go dressed as Thomas the Tank Engine. There was no deciding, it was a given. Aidan LOVES Thomas. He is so funny though because if anyone called him Thomas he would look at them straight in the face and say "I am not Thomas, I am Aidan Baker". He is funny like that. Such a serious little guy.

Aidan made out like a bandit with candy. Which means mommy and daddy made out with candy as well lol. Overall I would say it was a perfect Halloween.

Jake is rolling over onto his belly all of the time now. He still doesn't like it very much but is starting to get used to it. He is also starting to sit up much better now. I can see him being mobile very soon.

Another big advancement is for the past few days he has been taking 4 ounces of formula at a time. This is big for him since not to long ago (weeks) we barely could get him to take 2 ounces. We still have a long way to go before he does not need him g-tube anymore but its a step in the right direction.

Aidan and Jacob continue to grow closer. Every morning Aidan tells me he wants to see Jacob's Friendly Face lol. Jacob leans into Aidan like he wants to hug him and he can't get enough of watching him. Its really amazing to watch this bond grow.

Now for some more pictures...



So, Aidan... how about you slide that pizza over my way?

Hey Waitress.. You forgot my pizza.

He's not looking.. now is my chance!

Silly Aidan... Cribs are for babies.

Those smiles say it all.

Tuesday, October 19, 2010

Appointments and Shots Oh My!

It is hard to believe but on Saturday Jacob will be 7 months old! I am happy to report he continues to thrive. He is 17lbs 9oz and 26.5" long. He gained a pound and a half in the last month which is great. Here is an update from our busy week so far.

Monday we went to get a chest x-ray for Jacob. I thought I had one-upped him because I gave the girls a heads up that he loves to move at the last minute and we always need to re-shoot. So thinking we would beat him at his game one of the techs helped me hold him down. We left to wait for our x-rays and I was confident that this time we would not get called back for another x-ray... a few minutes later Jacob showed us lol. He arched at the last second on one of the x-rays and it was not lined up right so we had to take it again. Here we were so confident but Jacob as usual showed us who was in charge.

Tuesday we went for Jacob's cardiology visit. The x-ray looked the same as before which was great considering he was taken off of diuretics a few weeks ago. I had been worried about how his body would handle not being on them anymore. Luckily everything looked good so he can stay off of them. All hypoplasts are weened off of diuretics after the Glenn but I was not sure if it would be as easy for Jake since he has the breathing issues. SO happy that he transitioned smoothly.

Jake will remain on 3mls of Captopril and 0.6ml of Bethanichol 3 times a day and 1/2 baby aspirin once a day. He will also remain on Prevacid however we may increase his dosage. I need to contact his GI doctor about this but he has been arching alot lately. This is something he did alot while recovering from his Norwood operation. CHOP did a neurological scan and it was normal. Jacob's doctors and I feel that the arching is either from his reflux or its more comfortable for him to breathe. He seems to do it more after he eats or when he is tired. We have not been using his swing at all lately because he always does it in there so it may be positional as well. If it is reflux then we will need to increase his prevacid. He has been on the same dose since he was 13lbs, he is now 17.5lbs so that makes sense.

A month ago Jake had his first dose of the flu shot. He has to get it in two parts since this was the first time he got it. Yesterday he had his 6 month shots and his second half of his flu shot. He was fussy at night and had a 99 degree temp but Tylenol and Motrin did the trick. Today he was much better. I only had to give him Tylenol a few times.

Jacob is doing so well that I only use the pulse ox machine every few days now unless I have a concern. About every 3 days I keep him hooked up all night. Every time I do this his oxygen stays between 85 and 90 which is perfect! I walk by his room and see the numbers and can't help but to grin from ear to ear. You don't know how happy it makes me. When we came home he would dip into the 60s. I worried so much over that bright red number and now it just makes me smile! Have I mentioned lately how proud I am of Jacob. He is a fighter through and through.

I may have said this in a previous post but Jake is completely off of his overnight feeds and its wonderful having him be wireless at night. You don't even think about these basic things when you have a healthy kid, things like being able to check on your baby or hold him without navigating through all of the wires they are hooked to. It is GREAT to be able to walk up to his crib, pick him up and take him wherever I need to. LOVE IT!

He takes 6oz of formula 4 times a day, then another 4 ounces around midnight just to hold him over and give him some extra calories.

For the day feeds he is taking 70 to 100oz by bottle (about 2 to 3 ounces). The rest goes through his g-tube. He just gets to tired and loses interest in it. He tolerates it through the tube and tolerates me increasing his volume weekly which is great.

Jake also LOVES baby food. He eats 2 to 3 containers twice a day. He loves his veggies just like Aidan did. The only thing I have found that he does not like are peaches. He even liked the bananas which Aidan would never eat as a baby.

We decided to change Jacob's pediatrician. Not because we did not like Dr. Harris. We love Dr. Harris and his staff. We are changing because Jacob has special needs. He is a complicated kid as everyone knows. His Cardiologist and GI doctor are both in a group of doctors at Cabell Huntington Hospital. This is also the hospital where Jacob would have to go if he needed care locally. Dr. Harris is affiliated with a different hospital.

Dr. Harris has a family practice so its not specialized just in pediatrics. Things like RSV shots are not common there so its harder to get it approved. Jake needs monthly RSV shots through the winter. The past month the nurses and I have been trying to get someone to send the shots to the doctors office. It has been one dead end after another. The companies that would send it wanted me to pay $700 out of my pocket. I can't pay $700/month.

Andy, Aidan and I will still be going to Dr. Harris. I am excited to have Jacob's care all in one group of doctors. This way if they need to get together for any reason they can. Also if Jake has to be admitted (Praying that doesn't happen) then multiple doctors will be familiar with his history. Dr. Heydarian thinks very highly of his new pediatrician so I am sure she will give him great care.

We continue to work with Jake on rolling over. Its so frustrating because he can do it he just does not want to lol. He rolls over almost all the way. He loves being on his sides. He even sleeps on his side. I barely have to put my hand on his bottom and he flips right over. He has started pushing all the way up on his hands. He kicks like he is trying to crawl. He has gotten better about tummy time. He still does not like it for a extended period of time but I can distract him for a few minutes.

I have also been sitting Jacob up a lot. He does well. He can sit unsupported for a minute or so before he starts leaning hehe. If I have a toy for him to hold on to he stays even longer. He is doing great with head control but we are not at the point of sitting unsupported without me right there.

Tonight we sat him on this little walker that you can also ride on. He put his feet up and I wheeled him around the house (Supporting him so he did not fall). He loved it! We raced Aidan up and down the hall way. I don't have any photo's of this yet but will take some soon and post for everyone to see.

Loves to eat his feet!

Lately there have been a lot of babies who have died from HLHS. Each time a baby dies it is a painful reminder of how fragile Jacob is. How he is a medical miracle and a pioneer for this illness. 20 years ago he would not be here right now. Its sad but death has become a big part of our life. It goes along with having a sick child. I am friends with over 100 moms on facebook who have HLHS kids. I am also friends with adults in their 20's who have HLHS. I must get a letter or a friend request every week from a mom who just found out her baby will be born with this. Some people ask why I put myself through all of the sadness because as you know many babies don't make it.

The answer... These moms are the most amazing support group. Yes there is death and yes there is sadness and it is very hard at times. You grow to love these children and watch their families go through the most unimaginable pain of their life. It is also a place of support and hope. I have made the most amazing bonds with some other moms who are walking the same journey as we are. These moms would do anything for you no matter what battles they are currently fighting. Its a family. Its my family. It is not a family I ever imagined joining but I am proud to be a part of this family. You don't abandon your family when they need you most. You hold them tighter and love them stronger.

I also am honored to be able to help moms who have just been diagnosed. I remember that fear of the unknown. I remember going to my 20 week ultrasound excited to see if we were having a boy or a girl and walking out in tears after hearing "There is something wrong with the heart". I remember being told I had to chose if my child lived or died. I remember feeling lost, devastated, alone. There is no greater feeling then giving another mom hope, showing her she is not alone and give her the information that I wish I had someone give to me. I thank God everyday I made the choices I did. I knew Jacob may not make it when I chose surgery but look at him now. I can't imagine never knowing his smile. I have seen my baby on full life support, with his chest open, go through 2 open heart surgeries and countless other procedures. I honestly should have a nursing degree by now with all of the meds I have given and machines I have mastered. I have felt helpless and put all my faith in GOD and the doctors. It is not easy, its hard as hell but it is so worth it! It has gotten easier and I consider myself so blessed.

I am focusing on LIFE. I refuse to live his life fearing his death. I want his life to be spent LIVING not FEARING. He is a blessing, he is a miracle, he is my baby. I thank GOD everyday for each moment we get with him. I pray its a lifetime but that is in God's hands. I am here to love him, teach him, cherish him and that is exactly what I plan to do.

Aidan and Jacob are my world and I want them to have the best life possible. I won't settle for anything less!

This poem was given to me by my cousin Lisa. It was given to her by my Grandfather on my father's side before he passed away. Lisa has two children of her own with heart conditions. Her one child Sarah had a heart transplant and her son Ian may need one in the future. Its pretty amazing that he chose this poem to give to Lisa, he had no idea how much it would mean to us. Thank you Grandpa, I know your in heaven watching over our beautiful children.

To All Parents
"I'll lend you, for a little while, a child of mine," He said.
"For you to love while he lives, and mourn when he is dead."

"It may be six or seven years, or twenty-two, or three,
But will you, 'til I call him back, take care of him for me?"

"He'll bring his charms to gladden you, and shall his stay be brief,
You'll have his lovely memories as solace for your grief."

"I cannot promise he will stay, as all from earth return,
But there are lessons taught down there I want this child to learn."

"I've looked the wide world over in my search for teachers true,
And from the throngs that crowd life's lanes, I have selected you."

"Now will you give him all your love - think not the labor vain,
Nor hate me when I come to call to take him back again?"

"I fancied that I heard them say, 'Dear Lord, thy will be done.'
For all the joy this child shall bring, the risk of grief we'll run."

"We'll shower him with tenderness and love him while we may,
And for the happiness we've known, forever grateful stay."

"And should the angels call for him much sooner than we planned,
We'll brave the bitter grief that comes, and try to understand."

~Author Unknown


Enjoying the nice weather

Boston Fans

Sneak peak at Jake's Halloween costume

Fall Fun
We took Aidan to the Pumpkin Festival and the Corn Maze...
Thanks Grandma for watching Jake for us so we could have some Aidan time!

Sunday, October 17, 2010

Sweet Dreams Emma Grace

I have a very heavy heart tonight. Emma Grace Scott earned her wings at 11:54 this afternoon. Emma was born on August 7th, 2009 with HLHS. She spent all but a few weeks of her life at Children's Hospital of Philadelphia. I met Emma and her mom Christina while at CHOP with Jacob. Christina and I became close friends and shared many cups of coffee while at CHOP with our babies.

Emma has struggled her whole life and was waiting on a new heart. She had been on the transplant list for months. Recently she had been fighting infection after infection and her body could not fight any longer. She passed peacefully while in her mother's arms.

As sad as I am that Emma is no longer with us I also know that she is no longer struggling. Her heart is now whole again and I like to believe she is flying high with the other angels taken from this earth too soon. She no longer has wires and tubes and she is free from all pain.

Please pray for Emma's mom Christina and her brother and sister. Please for comfort and strength for the entire family during this difficult time.

Rest in peace baby girl. Your strength and love was inspirational. You may be gone from this earth but you will remain in our hearts forever.

Friday, October 15, 2010

Wave of Light

October 15th Pregnancy and Infant Loss Wave of Light

Today at 7pm candles were lit all over the world in recognition of
International Baby Loss Awareness Day.

This past year has shown me a whole new world. I have always said that the loss of a child would be the greatest pain anyone could endure. Many could not imagine that pain. This past year I have come face to face with that fear. I have also seen many families go through that loss. The CHD world is full of hope, friendships and support. It is also full of sadness, pain and death. We go through life taking for granted that we will always have a tomorrow. Jacob has taught me how fragile life is. We need to cherish every moment we have no matter how stressful because tomorrow is not a given.

According to a 2004 National Vital Statistics Report issued by the Centers for Disease Control and Prevention (CDC), in 2000, 15.6% or 1,003,000 of the 6,401,000 pregnancies in the United States ended in either a miscarriage or stillbirth; the CDC also indicates that in 2003 the number of live births in the United States was 4,093,000; of those births, 27,500 ended in the death of an infant under the age of one.

Please take a moment to remember all those children who were lost while in the womb and those whose life was cut way to short. Remember all of the families who deal with this loss everyday. Remember that life is a gift and slow down and enjoy it. Hug your kids and spend as much time with them as possible. The dishes can wait, these moments can't.

Thursday, October 7, 2010

Big Changes!

I am pleased to write that Jacob continues to thrive since his Glenn. He is now 17 pounds and 25.5" long. His oxygen levels have really improved. He is always around mid 80's. He even stayed at 91 for a while the other night. It seems like his lungs just needed time to heal.

The biggest change is that he is no longer on his diuretics and he no longer gets overnight feeds.

Jake is down to 4 medications (Aspirin, Captopril, Prevacid and Bethanichol). He will always be on Aspirin and Captopril (This will change to Enapril when he is older). He will be on Bethanichol and prevacid as long as he needs them.

Jake no longer needs his overnight feeds! One less wire attached to him at night. He is up to 160mls 5 times a day. He takes about 70mls by bottle before he gets tired of it and I have to put the rest through his g-tube. Jake also LOVES baby food. He likes the vegetables the best just like his big brother did. I wish his big brother still liked them lol.

The next step is to condense his feeds so he gets more volume less times a day. So far he is doing very well every time we increase his feeds. He does get a lot of air in his belly when drinking from a bottle so I have had to vent him a few times a day lately but he has been pretty good overall.

I also switched his g-tube out the other day and he did not even cry. I have had to put it back in when it was yanked out but never took it out on purpose to put a new one in. Food was not going through as well as it should so I thought it may have been getting clogged up. He did not even wiggle around a lot which was good since I was alone and did not have an extra pair of hands. I just talked to him and he smiled away and I popped the new one in (Covered in KY Jelly so it would not hurt). Amazing how things that once would have made you cringe become so normal to you. I have faced so much that I never imagined I would face in my life. I think I could be a nurse at this point lol. I love taking care of Jake though and would not change it for the world.

The best thing is that Jake is our life is becoming more and more stable and normal. We are seeing less medications, less machines, less doctors appointments and more smiles! This makes me so happy for my boys. Instead of crying I wake up hearing Jake talking in his crib and laughing. He has started this new laugh which sounds like a cough. Its adorable. Scared me at first but now that I know it, its adorable. He has this smile that just melts your heart. He squints his eyes and sticks out his tongue. So cute. Aidan wakes up every morning and tells me he wants to see "Jake's Friendly Face". He is such a GREAT big brother. He hugs Jake, talks to him, lets him play with his toys. It means so much to me to see them bond. We are just so happy to be home together.

Jake is rolling from side to side all of the time. He has rolled onto his belly a few times on his own but usually I have to bush on his leg a little bit and he rolls right over. He is still not a fan of tummy time but he is getting more used to it. He can hold his head up with his arms so he can see everyone.

He puts EVERYTHING in his mouth. I have to keep onesies on him or he grabs the gauze around his button and tries to stick it in his mouth. He also tries to rip the g-tube button out so I have to keep that covered. Jake has started sucking his thumb. I have to admit its cute but I keep telling him that I can take away a binki, can't take away a thumb so he really needs to stop that lol. Hey this kid has earned some thumb sucking.

Jake is also sitting up much better on his own. He still needs some help as he topples over a lot (I don't let him fall, no worries) but he is learning.

Overall he is doing better than I ever imagined.

Jake and Aidan both had their flu shots this week. Aidan wanted to go first so Jake would not be afraid. He cried and was more upset about crying than the actual shot. He was so sweet, he looked at me and said "I don't like that". Then he watched as Jake got his. Jake cried for a second but I dipped his pacifier in apple jelly and he was good to go. Neither of my kids had any fevers or adverse effects and were good to go by the time we left the office.

I am still trying to figure out Jake's RSV vaccination. I am trying to get our doctors office to order it. Jake HAS to have it monthly through March. Dr. Heydarian gave me a form that they can mail in so the insurance will pay for it first. I was going to have home nursing come but they are out of network. These shots are $1500/shot so many people don't want to order them. Our insurance covers it but I am just having a hard time getting someone to give it to him. Pray I get this worked out soon since he needs his first one in November.

We are still not bringing Jake into the public until after flu season. We take him from walks and our close friends and family can come visit. They all know that they must be prepared to use TONS of hand sanitizer lol. I just don't see the need to take him to stores and restaurants. Honestly he would probably cry the whole time so it would not be fun for us anyway. I just think its to risky during flu season. When its over he will be one year old and stronger. I don't know if I will ever be totally comfortable having him around large crowds but I will feel much better when he is older and its not flu season.

So for now if you want to see us it will have to be at our house and you have to be 100% healthy. Jake has been through so much and we owe it to him to protect him as much as we can. On the flip side... when he is older I will have to relax more because I don't want him to fear his body or his life. I will just have to trust that he will make the right choices and be there to ground him if he doesn't lol. I guess I have some time before I have to worry about all of that.

Until then I am LOVING and ENJOYING every moment with all of my boys!

Now for the fun part... PICTURES!

The Bakers