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!


  1. Kathy, I love this new update! LOVE LOVE LOVE thinking about how far our boys have come from when we were pregnant and anxiously awaiting their arrivals, you know? Also can TOTALLY relate to the pulse-ox comment. I walked by Bodie's room tonight and saw him satting 88 (he's been at least at 86 every time I checked since putting him down), and I am literally grinning from ear to ear!

  2. Love you Kath. I'm so blessed to have you in my life. Jake is doing amazing! I just sent you an email tonight about Zoe's reflux which I think is returning, like post-Norwood style. Interesting I see Jake may be having some problems too. Let me know if you find out anything good/helpful.

    Love those high sats! Keep it up Jake!

  3. P.S. Great update. You wanna do mine? :)

  4. Lol Stacey it took me two days to do this one. I have been so bad about updating, hard to find the time to concentrate and get it done.

    I am blessed to have you both in my life as well! Love you and yoru sweet babies!

    Jake had tummy troubles as well after he started solids.. I emailed you back. Try Mirilax, helped him.

    Go Bodie on the SATS!

  5. Your boys are adorable love the pics! Just wanted to say too how much I liked this words you wrote: "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." This is how I feel too. Yes, I worry but I try to push the worry and fear aside so it does not interfere with the fact that my baby is happy and with me NOW and I must enjoy it! Also, don't worry about the other ... hugs. =)