Got Synagis? We do!

I am so sorry that it has taken me so long to post an update. But no news is good news in our house. Between two kids and working from home its hard to find the time to blog.

Here is what's been going on lately...

SPEECH/NUTRITION
Jake continues to do very well with eating. He has been averaging 80 to 100mls by bottle and the rest goes in his tube. Amy and Bryn (Nutritionist/Speech therapist) are both happy with his volume right now so we are not going to push it anymore right now. Instead we are focusing on him taking more by bottle. I am giving him more breaks and trying to see if he takes more by mouth. Jake tends to drink 80mls real fast and then he is done and wants nothing more to do with it. The longer we wait between feeds the more he drinks by bottle.

The good thing is that since he is no longer on a feeding pump I don't have to be so structured on when he gets his feeds. Its blissfully normal now so I just take his cues on when he is hungry. I have to give him the rest of the food because he needs the calories. It is hard to tell if he stops because he is not hungry or because he is tired. He doesn't cry when I put the rest through his tube so that tells us that its because he is tired not full.

We are increasing his baby food intake to 3 times a day. Again, I go by Jake on this. If he doesn't seem interested then I don't push it. He has never had a problem eating baby food. He even smacks his little lips, its really cute. He usually eats about one stage two container (3.5oz) and then he is done. If we get 3 in a day that adds another 10.5oz to his calorie intake which is great.

Both ladies were very impressed with all of Jake's new "Baby Talk". His favorite thing to do right now is to scream lol. Mommy of course loves this stage. He is also experimenting with blowing bubbles and other baby sounds. Still no ma-ma or da-da but I am working on that with him. He is interacting so much more these days. His favorite game is peek-a-boo. He laughs so hard. It is so fun to see him light up and try to play.

PHYSICAL THERAPY
We are in the process of switching physical therapists. I loved Jake's physical therapist, she was great with him. Unfortunately her kids have been sick a lot lately and we have not been able to have a visit because its to risky for Jake. Its been over a month and I really want someone to come and start working with him more frequently. I work with Jake everyday on sitting, tummy time, and we even practice walking (with mommy holding under our arms). Jake can sit for a little wile but still topples to the side after a minute or two. He rolls from side to side and rolls over to his back every time I put him on his belly.


Jake is not crawling yet but Aidan did not crawl until he was 9 months old and Jake spent a few months in the hospital which could cause a delay in his gross motor skills. That is why its really important to me that we have someone come in more frequently to work with Jake.

SYNAGIS
For the past few months I have been on the phone trying to get Synagis shots for Jake. RSV season is coming up and for children with a complex heart condition RSV can be deadly. Synagis is a shot which is given to prevent RSV. It is an antibody that will help protect Jake if he were to get it. The problem is that Synagis is very expensive so its hard to get approval for it. Jake's doctors all agreed that he has to have the monthly shots through March. First Medco called and told me it was going to cost me $700/month. That is just what my portion was going to be. I told them NO WAY! After calling my insurance company and about 4 other numbers I finally figured out who we needed to order specialty drugs from. They called me a few days ago and told me that my insurance would cover 100%... AMAZING NEWS!

PEDIATRICIAN VISIT
Today we went to Jake's new pediatrician. She was really nice and great with Jake. Aidan came with us today. Its great having all of Jake's doctors in one area. Bert (Dr. Heydarian's nurse) made Aidan's day by giving him stickers and crayons to color with while we were there. Thank you Bert!

Jake weighed 18lbs 9oz! He is getting so big. Jake was all smiles for his new doctors... until the shots came. Aidan was really sweet. I asked him if he wanted to hold Jacob's hand and he replied... of course! He held Jake's hand the whole time. Although I am sure Aidan made him feel better Jake still screamed bloody murder. He was calm by the time we left and all smiles again. Jake has been great all night, no side affects from the shots. His pediatrician said there rarely are any because its more of an antibody than a vaccine. He was a tiny bit fussy tonight but he has been teething a lot.

PEDIATRICIAN TAKE TWO
On our way home from Jake's appointment Aidan told me his ears were hurting. He said it a few more times and when I asked where he pointed inside of his ear. I figured I better take him to his pediatrician just in case he had an ear infection. They were just about to go to lunch but said to come on in so they could check it out. We got there and I rushed the boys in so he could be checked out. When we got there I asked Aidan again and he said he was pretending but then when I said we would cancel the appointment he said no it does hurt mommy. He told me that it hurt really bad and he was not pretending. I had my doubts but decided we were there anyway so we went in. After Dr. Harris said his ears looked perfect Aidan said "I told you I was just pretending!" He was so proud of himself. KIDS!!!!!

I told him that his little prank cost me $20 bucks and its not good to pretend about health matters, especially in our house! I couldn't be mad at him though because I know why he did it. Jake goes to the doctor all of the time and he was wanting some of the attention even though its not good attention. When we were at Jake's new pediatrician Aidan mentioned that he wanted Dr. Harris. He loves Dr. Harris and I think it confused him that we were at a different doctor. I know it may be easier to have one pediatrician for both kids but I am going to keep Aidan with Dr. Harris because he really loves him and I think some stability is good for him right now.

So taking Aidan today was great for him to feel bonded with his brother and feel included. It also backfired on me with the prank illness lol. I have to say I love my boys more than life itself. Life would be so boring without them.

VISIT TO CINCINNATI
Next week we will be heading to Cincinnati for a follow up pulmonary appointment and a fetal heart echo. They won't be doing any testing during the pulmonary visit but if they feel it is necessary than we will have to go back for that. Jake will be sedated for the heart echo so he won't be able to eat anything for 6 hours prior. Jake HATES heart echos. The last one took us 2 hours to get him calmed down. The sedation will just be oral sedation and won't be anything strong. They said you could pinch him and he would wake up. It will just help him sleep so they can get good pictures. It has been a while since he has had a echo so I am anxious but also very glad to know how he is doing internally. I am excited to meet Dr. Heydarian's daughter, she is a cardiologist at Cincinnati Children's. She will be there when we get Jake's echo.

It is always nerve racking to travel and go to a hospital with Jake. Next week will be especially hard because his appointment is exactly one year from the day we were told about Jake's heart condition when I was pregnant. Last year at this time I was traveling to Cincinnati for a fetal echo and I was told I had to decide if my baby would live or not. I was told I had to decide if I would terminate, have the baby and let him die or choose to do 3 open heart surgeries which won't ever fix his heart but would give him a chance at life. I know that it is going to be emotional for me to be there again. On one hand I am so blessed that I have him and he is going with me. On the other hand in the back of my head I am scared about the results and what they will say. I got such horrible news last year there. I left thinking we were going to lose our baby. I am praying that we get very good news this time.

We will be leaving here on Tuesday and Jake's appointments are on Wednesday. My mom and Aidan will be coming with us. Daddy has to work. I am bringing Aidan because although he did so well with everything we have been through this year it has still affected him. Almost daily he tells me "Mommy I am going to miss you when you go to the hospital" or he tells me that I hurt his feelings when I left him to go to Philadelphia with Jake. It does not bother him much but its there and that is completely understandable with us having to be separated the first few months of Jake's life. I think it will be good for him to come and see that I am not going away and I will be back. I don't want him to resent Jake for taking me away from him.

I have decided to stay Wednesday night there as well. I don't want to put Jacob through a long car ride after the long day he will be having. I will update the blog next week and let everyone know what happened.

Please pray that everything goes well for Jake next week.

Thank you so much for all of the prayers for our beautiful miracle.

Love,
The Bakers

Jake's Blankie with a Cause. Created by Shannon in honor of her angel
Lorenzo who lost his battle with HLHS at 13 months old.