Heart Moms

I have met so many amazing moms and their kids during our stay here and online through facebook. Today a few of us got together to share stories. I can't express how much their support has helped me. It is a bond that I will cherish for the rest of my life. It was great meeting all of you and your beautiful children!

Had a great day with Jake. Jake is around 8 and a half pounds and I think the time and weight gain is helping with his breathing. I see him all of the time so its harder for me to notice the change but his main cardiologist mentioned his breathing seemed like it was improving. Then Lauren his speech therapist (they work with the kids on feeding) came and also commented that his respiratory rate was much better. Tonight when I called to check on him his night nurse also said he was breathing in the 60's. He has always had a baseline in the 70's. I am afraid to get my hopes up but I am praying this is a trend that will continue to improve.

In wired but good news Jake pooped today lol. He had been constipated and I felt so bad for him because he kept baring down and was not happy. We were going to give him a suppository and then as if he knew and did not want it he pooped.

Feeding:
As I said earlier Lauren came back today to work with Jake with bottle feeding. Although his respiratory rate was better he still works really hard when eating by bottle and wears himself out. Our goal right now is to just be able to feed him once a day for a short period of time. Just enough so he won't forget the taste and the reflex of feeding by mouth. Then once his breathing gets better we can do more.

We got a good pattern and I am not aloud to do it once a day even without them. We let him eat from the bottle for about 2 minutes with small breaks about every 5 swallows. Give him a break for a few minutes then do it again. Then we stop. I know that doesn't sound like much but for him it is. Its the equivelent of climbing a mountain while drinking as you gasp for air. If it were up to him he would chug the bottle but its so hard for him because of his breathing. He has been doing great though!

So another great day with my baby boy!

Cath pushed back to Monday

We were just informed that the cath will now be on Monday. I am frustrated but at the same time I am blessed that Jacob is stable and doesn't NEED to have his cath today.

This cath is to decide whether he is healthy enough to come home or needs to stay here until his Glenn. There is another baby who needs and emergent cath. It will take all day for what they need to do for that baby. Praying for that family.

So although I had hoped to have answers today, I am glad that Jacob is doing well enough to be pushed back as opposed to NEEDING it emergently.

We are getting all paperwork and such done today so if Monday goes well we could leave here within a day or two once he is healed from the cath and won't be stuck with as much paperwork.

Thank you as always for the prayers and support. Hope to have some answers Monday, until then... we wait.

Heart Cath Today

Jacob goes for his heart cath soon. He is second on the schedule so it will be whenever they are done with the first one. Please pray that everything goes well. They will check the pressures in his heart and look at the blood flow to the lungs as well.

Please pray. I will update when I know something!

Jacob and baby Mia update

Heart Friend Baby Mia:
I have been so lucky to have met so many amazing moms on this journey. The support has helped so much while coping with this. One mom that is very dear to me is Jennifer Marrone. We met through facebook while pregnant and in person later on here in Philly. She is from New Orleans and had a set of twins, Madden and Mia. Mia has HLHS like Jacob. For those of you who have been following her story she is doing very well. Her surgery was this morning and it went like textbook. Thank God it went so well. I am asking everyone to please also keep baby Mia and her family in your prayers as they are just beginning this journey.

The Today Show and NBC is doing a documentary about the twins and baby Mia's journey with HLHS. I will let everyone know as soon as I find out when it will air. They even scrubbed in and filmed the surgery. It will be very interesting to see and will be great for HLHS awareness.

Twins Madden (left) and Mia (Right) Marrone

Now on to Jacob! Jake had a pretty good day today.

Here are the highlights:

Feeding:
We tried feeding him by bottle yesterday and again today. Both days he did very well. We have to go very slow because of his fast breathing. He tires very quickly. His feeding therapist says for him its like climbing a mountain while trying to gulp water. It is very hard for him. He gets so excited though and drinks from it so well. I hope we can make it work without putting him at risk because he loves it. Eventually his breathing will slow down and it will be easier. We want him to be able to do it at least a little bit so he doesnt loose that instinct. Even once a day would be good for him so he won't loose that.

Infection:
His incision looks so good today. The redness has faded and its already scabbing over. They did labs again today and his while blood cells are back down which means the infection is gong away. Thank God the antibiotics are working! The infection never went to his blood it was just a superficial skin infection, again thank GOD!

Heart Cath:
Jake is still set to have his heart cath on Friday. They may have to push him back to Monday depending on what else is on the schedule. This is just to explore his heart and get data so its not emergent. If something else comes in which needs to be done first then he may get bumped. Hoping he gets to go Friday because if it looks good then we would be able to start talking about discharge plans on Monday. If its not done until Monday than the earliest would be later that week. As I have said before we will get excited about going home the day they kick us out. Until then things are up to Jake and we have to take it day by day.

Even though this is not a HIGH risk procedure there are still risks. He has to go back on the vent AGAIN, and have anethesia. He also has risk of clotting and they go into the heart so there is always risk of bleeding or rhythem problems. Please, Please keep Jacob in your prayers. I am so nervous but I know we have to do it to make sure we know exactly what is going on. Echo's only give estimates, this will give them actual data to go by. They will be able to make sure there is no narrowing of the shunt, aorta or any of the arteries. They will also get a better look at how his lungs are working. So again we are asking for prayers.


As always thank you so much to everyone who has been fighting along with us and praying for Jacob. And thank you to everyone who has donated toward helping him get well. Our family never imagined we would face something like this and I can't tell you how much we appreciate everything.

Love and Heart Hugs
Kathy, Andy, Aidan and Jacob

The Plan

Talked to Jacob's doctors today. Here is what we found out...

Infection:
Jacob is now on IV antibiotics. They are stronger so the hope is that it will clear up the infection sooner. He can switch to oral antibiotics after a few days if it helps. They think the infection was caused by an abscess in a stitch. He will be on some form of antibiotics for at least 7 to 10 days.

Weight/diet:
Jacob is doing so well that eventually we may have to back off the extra calories he is getting. He is 8 pounds now! For now we will keep his diet the same since he has catching up to do. The g-tube and fortifying worked so well!

They are going to start trying to feed him by bottle again. We can give him a little bit through the bottle before each feed and the rest by the g-tube. We will see if his breathing can tolorate it. Praying it does, he loves the taste!

Going Home:
The doctors are all still concerned about his lung condition and the rapid breathing. They said that they want to do a heart cath before we go home. They are not opposed to us going home but since he has been through so much and since he still is having breathing issues, they want to know that his heart function is good enough to go. With the cath they can measure all of the pressures in his heart and lungs and get a much clearer picture of his situation. It will be sometime next week.

Jacob is a unique case and he has had many setbacks so we want to make sure that once we go home, we wont have to turn right back around. They should also have a better idea of when to do his second surgery after seeing the results from the cath. It should be sometime between 4 and 6 months old.

So we will just have to wait and see... again. I won't be home for mother's day after all.

Please pray that Jacob's infection goes away. And please pray his cath goes well. Even though it is not an OR surgery it is still a difficult procedure that takes 3 to 4 hours. He will need anethesia again which scares me because of what he went through after his last surgery with the medication.

Thank you again for all of the support and prayers. This journey has been more difficult than we ever imagined but we are so blessed to have Jacob and to have so many people praying for us.

Love,
Kathy, Andy, Aidan and Jacob!

Just as I thought...

Infection:
Jacob's incision is most likely infected. I knew 3 days ago it was looking green where the scab was at the top. They were not concerned but kept an eye on it. Yesterday the scab came off and it started draining. Today it looked a little red so they did bloodwork. His blood work came back and showed that his white blood cells were elevated which means it most likely is infected.

Jake was put on oral antibiotics today. Praying they caught it in time. If an infection gets really bad they have to open their chest back up to scrape it out. PRAYING THAT DOESN"T HAPPEN. The good news is that if the doctors decide he can come home, he can go home on these antibiotics.

GETTING ANSWERS...

Hoping we get some answers tomorrow. Jacob's primary cardiologist Dr. Swazst will be back from vacation tomorrow. Everyone has been waiting for her to get back so we can come up with a long term plan tomorrow. Hopefully we will find out whether they think he is strong enough to go home or whether they think he will need to stay until after his second surgery. It seems pretty split. Some doctors act like they think he should go home, others think his breathing is too fast and he should stay.

I am prepared for either decision. I hope we can go home so our family can be together again in one place. However I also want to do what will be best for Jacob. This is all temporary and is to give him a good life. Right now our goal is to keep him alive and his heart in great shape, whatever it takes. Unfortunatly unlike other parents I do have to worry about the fact that my son is incredibly fragile and little things that are not a concern for most people are for us.

It will be nice to have a plan though, to know one way or another.

Regardless of that decision we won't be going anywhere until his cultures come back negative for infection and it starts looking better.

Feeding:
I plan to see if speech can come back tomorrow. It has been over 2 weeks since they have let Jake try a bottle. They are to worried because of his breathing but I also don't wan't him loose that instinct. He loves drinking from a bottle but he gets so excited and he breathes way to fast.

I also plan to ask the nutritionist if we can feed him more often. He did better today but still gets hungry early so I want to see if we could feed him more volume or more often.

Jake and I went on two long walks today around the 6th floor. It is nice not being cooped up in that room.

Aidan got a haircut today.. Thanks Pappy and Mimi! It looks really cute. They also planted flowers outside for Jacob and I. Hopefully we will get to see them soon. I miss everyone so much.

I will update more tomorrow.. until then please keep praying for our sweet baby boy!

Hungry Boy

When I got to the hospital this morning Jacob was looking Tacky... Literally! Jake got so upset that his heart rate was registering as tachycardia. It was in the 180's which is not horrible but not good either. He was so hungry he was eating his hand. He was due for a feed but not past due however for a few days now Jake has been getting hungry about 2 and a half hours after he eats.

Feeding:
The problem is they want to feed him every 3 hours. The dietitian does not want to push his stomach because of the nissen. I think we should spread out his feeds more. It can't be good for him to be getting so hungry that his heart goes crazy. Plus the goal is for him to gain weight. When he gets upset he breathes twice as fast and burns more calories. I think its worse for him to get that upset than it would be for him to spread out his feeds. He has a specialist that takes it all into account so I will talk to her again on Monday.

Good news is he is gaining weight stedily. He is just about back to his birthweight now. GO JAKE!

Other than then him being so upset when I first got there we had a good day. We took a walk around the CICU, and CCU and also went down to the special delivery unit to say hi to Jenn. She had her twins Mia and Madden two days ago. Mia has HLHS like Jacob. Please pray for Mia who will be having her surgery next week.

Praying for good health:
So they are once again talking like we may go home this week. I am afraid to get my hopes up though. It is all up to Dr. Swazst on Monday. She will see if she thinks he is ready.

And of course when they are talking about going home everyone seems to be getting sick. Aidan has a cold and has had a cough. He is at home in WV. He has not coughed today and his cold seems to be going away so I am praying it does. My mom has a sinus infection so she has not been to see the baby in days. I have had some sinus pressure not much but just in case I decided to start antibiotics to. I am so terrified of this baby getting a cold that I do not want to take ANY chances. I have even been wearing a mask around him and I wash my hands like crazy. I know I can't keep him in a bubble but he is so fragile and he has such a hard time breathing I don't want to chance anything.

So even if I am being silly and a neurotic worrier I think this situation grants it. Everyone better get used to it because I am sure it will be even worse once I am home lol. So please pray everyone gets or stays healthy so Jacob can safely go home. And pray, pray, pray that Jacob continues to be healthy and gets stronger so he can go home. Although I am so afraid of not having the nurses and being so far from the hospital I am also anxious for Jake to know life outside of the hospital. I wonder if the fear will ever fade. It seems so overwheming sometimes.

I told Jake today how grateful I am to have been blessed to be his mother. I can't believe they offer the option of termination or compationate care now. Jacob is such a miracle and such an amazing child. I know this life is not what I would have chosen for him and to say it is difficult and scary is an understatement. But I would not change it for the world. When I look at that sweet angelic face I thank God for him and can't imagine my life without him.

Thank you again for all of the continued prayers, we appreciate the support we have received more than you will ever know.

Love the Baker Family