With it being heart month I have been posting a lot about CHD awareness and have not given you all your Jake fix lately! There is so much to share. Jake seems to be growing up so fast lately and hitting so many milestones.
Jake's last cardiology appointment went very well. He is doing great and doesn't need to go back for 3 months! That is huge considering when we first got home from Jake's first surgery he was going weekly. He is still in the 50th percentile for his weight. He weighs almost 21 pounds! Go Jake Go!
We will be going to Cincinnati Children's Hospital on March 7th and 8th for Jake to get his scopes. They will be looking at his upper airway to see if his vocal cords are paralyzed and hopefully find more information about his unique breathing. They will also be doing a heart echo while he is sedated and may be removing his skin tag that is on his ear. I am very nervous about this trip but also very excited to hopefully get some answers and see where we go from here. I will be sure to blog once we get home and let everyone know what we found out.
The biggest news is we have not used Jacob's g-tube for feeding in weeks! Jake was taking so much by bottle that his doctors and I discussed just letting him take what he wanted and not pushing the rest. Jake has done so amazingly well with this. He usually takes 3 to 4 eight ounce bottles a day and has no problems chugging it down. Since we are no longer pushing formula all of the time he is also taking 3 containers of baby food a day and snacks. You would never know this child ever had any feeding issues in the past. He LOVES to eat.
I can't tell you how unbelievably good it feels to not have a forced feeding schedule. To be able to just feed him when he is hungry and let him decide when he is full. To have some normalcy. Jake is much happier as well. No more sore skin around the tube site or feeling too full. Thank you GOD!
Jake is also eating snacks without gagging. It seems like yesterday he would gag when I fed him Stage 2 foods and now he is eating cheese puffs, cheerios and even cookies without a problem. Boy does he love them! I have to watch him though because he will try to shove a whole handful in his mouth at once.
I do still use the tube for his Prevacid right now because I have been warned by his pharmacist that it tastes very bad. I am picking up a new prescription tomorrow which will have flavoring and then I hope to give him everything orally.
As for when the tube comes out, we don't know. Usually they leave it in for at least 6 months after it is no longer needed just in case. Taking it out is easy, its like taking an earing out and letting the hole close up. However if you need to put it back in that requires surgery. I am hoping to have some more answers after we get his scopes done in a few weeks. They should know more about his vocal cords and upper airway which might affect the decision to take it out or not.
Jake is just doing so much these days. He loves to imitate us. He is clapping, waving and his new favorite trick is to put his hand in his mouth and make his voice vibrate. It's easier to show you what I am talking about...
Its so fun watching Jake learn. He watches us all so closely. His favorite game is playing peek-a-boo. I don't think he could ever get enough. He is learning what all of the functions on his toys do. And just like his brother he loves trying to get the computer. If he sees it he will roll right over to it and start hitting the keys. He loves trying to play with anything Aidan is playing with. Aidan doesn't like that so much. Jake is always trying to take Aidan's toys and Aidan is really good about it. He just looks at me and says "Mommy Jakie is teething on my toys" lol. Jake puts every thing in his mouth so Aidan says he is teething on them.
Jake's crawling skills have really improved as well. He knows he can get where he needs to go by rolling around and he is super fast! I look away for a second and he is across the room. Lately he has been pushing up on his knees with his belly off of the floor and trying to scoot forward. He moves by teetering and lunging forward. It takes him more time but he is crawling!
So to recap.... we are clapping, waving, blabbering, crawling and TUBE FREE!
Jake has also been quite busy raising awareness. Jake's CHD Awareness news cast will be airing on WCHS8/FOX11 on February 28th. Be sure to tune in and see Jacob's first TV interview. I will post the newscast on here when I get a copy of it. I am very excited to see how it turned out.
Jake's story was also was published in the local newspaper in the Go Red section of The Charleston Gazette and the Charleston Daily mail.
Here is the text from the article:
Life as a heart mom
By Kathy BakerMy husband and I went into my 20-week ultrasound excited to find out if we were having a boy or a girl; we left not knowing if our baby would survive. Our son, Jacob, was diagnosed with a severe congenital heart defect called Hypoplastic Left Heart Syndrome. The left side of his heart did not form. He only had half of a heart. We were told we had to decide to either terminate the pregnancy, have the baby and hold him until he passed away or choose for him to have a series of three open heart surgeries, the first of which would take place a few days after his birth. We chose to fight for our son and I thank God every day for that decision.
We traveled to Children’s Hospital of Philadelphia, where Jacob would be born in one of the top hypoplast centers in the country. Jacob had a very rough start. The first time I saw him, he was on a ventilator, and two hours after he was born, an extra piece of tissue in his heart collapsed over the only opening the blood had to travel through in his heart. He crashed and we almost lost him. The doctors rushed him into the catheterization lab and re-established blood flow. Jacob was very sick and no one knew if he would survive surgery. I held my sweet baby for the first time when he was nine days old. He was covered with wires and was about to have his first open heart surgery.
Thankfully, Jacob not only survived his surgery but he continued to grow stronger.
We were finally able to take him home when he was eight weeks old.
At four months of age we returned to Philadelphia for his second open heart surgery. Jake amazed us all and was home just six days later.
Jake continues to have rapid breathing due to the restriction in his lungs at birth. We will be going to Cincinnati Children’s Hospital in a few months to assess his airway. Jake continues to stun his doctors with his constant progress. He weighs more than kids without a cardiac condition. He is developing normally and enjoying life.
Life as a heart mom is not easy. There was a time when I was giving him eight different medications a day, some multiple times a day. You constantly worry, is he too blue? Is he sweating? Does he look puffy? I had to monitor his oxygen saturations closely since they are lower for a baby with his heart defect. He was on oxygen and a feeding pump. He also has a g-tube due to the strenuous work out on his heart from oral feeds. In a moment, I went from a pregnant mom excited to find out the sex of her baby to a fulltime nurse. I may not have chosen this life, but I can say, without a doubt, that I am proud to be a heart mom.
Jacob has taught me so much about life and what really matters. He has also taught me the importance of spreading CHD awareness.
One in 100 babies are born with a CHD. Four thousand babies each year won’t make it to see their first birthday.
Congenital Heart Defects are the #1 birth defect and the #1 cause for death from a birth defect. Yet it is underfunded.
Twice as many babies die from CHDs as all of the pediatric cancers combined, yet pediatric cancer gets five times the funding. I never even knew what a CHD was until I had Jacob. I feel like I owe it to him and to all of the other children to be their voice. Thanks to groups like the American Heart Association, we can share our stories and spread awareness and hope. Thirty years ago, HLHS proved fatal 100 percent of the time. Parents were told to take their baby home to die.
Today, experienced hypoplast centers are seeing 93 percent success rates.
With awareness, funding and medical advancements, I can only imagine what we can do for CHD children in another 30 years.
Jacob is a pioneer in this field. The doctors feel that children with HLHS may one day need heart transplants. We have learned that each day is a gift and we live life one day at a time. I pray that if Jacob, one day, requires a heart transplant that medical advancements will make that easier.
There is so much hope for CHD infants and children.
Jacob shows each of us, every day, that miracles do happen.
Please donate to the American Heart Association and help us fight heart disease, foster hope and build a future for hundreds of thousands of children.
Learn more about Jacob at jacobsspecialheart.blogspo
Thank you as always for all of the prayers for Jacob. Please keep them coming as we head to Cincinnati in a few weeks. Also please continue to help spread awareness for Congenital Heart Defects. Jake and all of the other thousands of children need us. Thank you for helping us make a difference!The Bakers