The Bond of Brothers

A few days ago Aidan told me that he wanted to keep baby Jacob forever. I smiled and told him that was why the doctors were fixing his heart, so we could keep him forever. Aidan said "No mommy I don't want them to fix his heart I just want to keep him forever". I asked him why he did not want the doctors to fix his brother's heart and he said "because I don't want him to go to the hospital, I want him to stay here with us".

I am blessed with the sweetest boy ever. Aidan loves his brother so much already, it makes my heart melt.

I love you Aidan and Jacob. I am here for you always and forever.

Love, Mommy

Boston Med

Tonight's episode of Boston Med is about a couple who had a baby born with HLHS. It will help give some insight into what families like ours go through. A time that should be full of joy turns into a time of fear and anxiety but also one of hope and inspiration.

Jake's Journey was even more risky and he was much sicker than most babies with HLHS because of his restricted septum and lung disease. Please watch tonight's episode so you can see a little bit of what families like ours go through.

Here is the synopsis:

Renee Peerless has spent nearly nine months of her pregnancy alone while her husband serves with the military in Iraq. His absence is made more difficult by the knowledge that their baby in utero has a serious heart defect and will need surgery within days of being born. A story of courage and hope, viewers will recognize the universal themes of motherhood, duty and determination that summon the best from us in difficult situations.

It airs tonight at 10pm on ABC. Set your DVRs

Love,
The Bakers

The World is Full of Good People

Thank You From The Bakers

This journey has shown me that there are still so many good people in this world. Perfect strangers who are willing to help you. I am sorry to those who have helped and not received a thank you note. Believe me I thank you in my heart and your gifts have not gone unnoticed, nor have your prayers and kind words. During the day I am taking care of the kids and keeping up with the chores around the house. Once they go to bed I start working. I am lucky to make it to bed by 1am and then it all begins again at 6. I just keep meaning to sit and write thank you notes but it never seems to get done. For this I apologize.

Our Thanks to You

I know I have thanked some of you already and this may be repetative but I really want everyone to know how much we appreciate you.

Thank you to everyone who sent us a donation to help with the costs of traveling and medical expenses. I was away from home for a long time. I had to resign as Art Director for the paper. I am able to work from home but on a part time basis. The medical bills, medications and Dr. Appointments add up fast so we can't thank you enough.

Also thank you everyone for all of the cards that I received while in Philly and all of the many prayers that were sent out. I know God heard them, Jacob is proof.

I want to send a big Thank You to Kim Corbin. She saw the story about Jacob in our local newspaper when I was pregnant with him and has been following this blog ever since. She contacted me recently to offer her hotel points so that we would have a place to stay on our trip to Philly and on our way home. Jacob does not like being in the car for a long time so we like to stay in Morgantown so we are close to a Children's Hospital and so we can break up the trip a bit. Kim does not even know us personally yet she was willing to help us have a place to stay. I can't tell you how much this means to us. As we found out the first go around we have no idea how long I will have to be away from home and it adds up so this is a major help. Thank you Kim so much for your generosity. I promise one day I will pay it forward.

I also would like to thank Nicole Slaughter and all of the members of her church. They all sent me letters of encouragement and faith while I was away from home. Nicole has been such an amazing supportive friend. She even sent me a gift on mother's day knowing I would be missing Aidan. Nicole's church members have been cooking us meals twice a week for dinner. It means so much to us. Our days are so busy. I literally make a pot of coffee but it is 2 hours later before I get to pour a cup lol. Thank you all. You are all amazing cooks!

Thank you to my family at the newspaper. Thank you for allowing me to work from home and thank you for the amazing outpoor of support. You all are family to me. Thank You!

Thank you to my fellow heart moms. Without your support and knowledge I would have been lost. You helped show me that I could do this. You helped show me that there is a rainbow at the other side of this. You gave me the most important gift. You gave me hope. To those who have lost their sweet angels, my heart aches for you. Your children will NEVER be forgotten and will always be dear to us. I love you all. Heart Hugs.

As always thank you to my family. Without you this would not have been possible. Thank you for giving up your lives to help us get through this difficult period in ours. I am here for you always and will def. return the favor one day.

I promise everyone I will pay it forward. I will volunteer at a Ronald McDonald House one day once things settle down. I will continue to be an advocate for Congenital Heart Defects. I will continue to help others who are just beginning this journey. Most of all I will continue to be the best mom possible for my children and I will make sure Jacob knows how many people loved and prayed for him.

You do not know how good the world really is until you are in this situation. Jacob is so special and he is so lucky to have you all on his team.

Isn't He Beautiful

Jacob is continuing to inspire and amaze me daily. He has become quiet the cuddler. He has been sucking his fingers for a while but today I noticed him studying his hands. He is so alert and smiles so much now. He seems to "talk" more and more each day.



Jake has aquired quite the entourage lately. I set him up with Birth to Three. They are a program designed to work with kids who could have a developmental delay due to a medical condition. Even though most HLHS kids do very well, they do spend a lot of time in the hospital so they qualify. Jake has a nutritionist, speech therapist (for bottle feeding), physical therapist, developmental specialist and a coordinator. Here is a breakdown of what we are working on.

Speech-
Trying feeds in different positions and pushing the formula in much slower. This is working really well. So far he has not cried on the last 7 feeds and slept through the night last night. She was very excited about how much Jake LOVES to eat. Most cardiac babies could care less about eating so she was very impressed. I am able to give him the bottle twice a day now, still for about 5 minutes. He loves the bottle so this is nice. We discussed the possibility of puting him on continuous feeds if he continued to have issues. We just don't want him to relate pain with feeding. That could cause problems when we try to feed him food by mouth. So far the slight changes have helped so hopefully that won't be needed. She also suggested I put his bassinet mattress at an angle thinking he still has reflux issues even with the nissen and prevacid. He is showing signs of it like the arching and he always needs me to put him on his stomach after a feed, it helps his stomach.

Physical Therapy-
Working on Jake sitting up and tucking his neck. Working on turning more to the right side. He favors his left and always rolls to that side. I think this is because while in the CICU I always sat on that side when talking and visiting with him. Sorry Buddy, mommy will sit ont he right next time and maybe it will even out. We discussed Jake's arching and Michelle suggested I put something under his legs at night to break up the pattern. It has worked. The past 2 days I have woke up and he was not arched in the bassinet.

Developmental-
We talked about similar thing that I worked on with the physical therapist. Jake's arching, crying in pain during feeds, throwing his arms to the side and not liking the right side. She thought that Jake may have some sensory issues from being in the hospital. He does not like being in the car seat. Fusses when you switch his position to much and is a very light sleeper. The hospital may have scared him some but we can work on that.

The nutritionist will be coming tomorrow for her evaluation and then we will have a group meeting on August 7th.

August 7th is also the day Jake's cardiologist will be back. All of his doctors went on vacation at the same time! I feel like I am being tested lol. So far no panic attacks, we are doing good lol.


Pulse Ox Troubles-

Jacob's pulse ox machine has been driving me mad. It started acting like he was having bradycardic episodes at night. I even woke him up a few times out of fear and he was ok. It looses the heartrate a lot. The at home nurse checked and I am putting it where it needs to be. I have swapped out the probe 3 times. The bad thing is it has become like "The boy that cries wolf". I hear it and sometimes turn it off knowing it is not a true read. I don't want to miss something that is real. This is a crucial time and I need a machine I can cound on. I called Apria and they are coming tomorrow to swap out the machine. Turns out it was recaled a long time ago and they don't even use that one here. Hopefully this one works better!

Jake's heartrate does hang out a little lower than normal at night so I am anxious to speak with his doctor about it. Have I mentioned I can't wait until he comes back lol.

Well I am falling asleep as I type as I am sure you are while reading.

Sweet Dreams and Thank You to everyone.

Love,
The Bakers

Sweetest Big Brother

Making a Difference

I has been a busy week and I am sorry I have not posted in a while. I am excited because my work has decided to let me work from home part time so that I can still bring in some income. I am not able to leave Jacob so this is perfect and I can not thank them enough for making this possible. I am a graphic designer and I love what I do and am excited to be able to be creative again. So I am nurse/mommy by day and designer by night.

Making a Difference!
I was excited to find out that the American heart association will be having a heart walk in September. My boss told them about Jacob and they were very interested in his story. I emailed them and told them how I want to help spread awareness anyway that I can. I have become so passionate about sharing our story in order to help others. There is no better feeling then knowing you can help someone through this roller coaster. As I have mentioned before, when I first found out about Jake I was not giving much hope or told about all of the kids living normal lives with this illness. Until I went searching and found so many amazing heart kids and parents I was devestated thinking we would lose our boy. That is why I started this blog. I want to show other people that there is hope.

Jake was even more complicated then a typical HLHS. He also has lung disease and has been through more in his young life than many of us will in a lifetime. Despite all of that he is here with us smiling and thriving! People need to see that. When you hear about The American Heart Association or other charities you know its nice that they are there to help people but you do not truley have a face to go along with the cause. If people can see Jacob and know that these illnesses are out there then maybe they will be more willing to donate. They can see who they are helping. I would put change in the Ronald McDonald house box occasionally but never really knew what it was going towards until I lived it. I can tell you that I will ALWAYS put money in there now. They were amazing and I don't know where we would have stayed for 2 months if it were not for them.

The American Heart Association would like us to participate in the Heart Walk in Sept. if possible. I really hope I can but it is dependent on how Jake is feeling, since his surgery will be in August. They are going to have a newscast and want us to be on that as well as give him a feature in their special section that will be in The Charleston Gazette and the Charleston Daily Mail. They are also doing a Heart Ball in February and are going to highlight Jacob for that as well. I am so proud of Jacob. He has already taught so many people about life and love and now he will spread awareness and hopefully help other babies just like him.


Update on Jake
Jacob continues to grow. I swear he gets longer and chunkier everyday. We had a great visit with Mimi but sadly she had to go home on Sunday. Thank you Mimi for everything you did for us.

Over the last few weeks Jacob has been changing so much. He has found his hands and loves to hold them together. He eats his fingers all of the time. He is turning to his right more which is great because he always favored his left. We have been working with him a lot on this. His eye contact is so great and he has been holding his head up consistently. He has been doing so well with holding his head up that we decided it was time for a Bumbo! Jake loves it and he looks like such a cute little peanut I love it.





The best thing is that Jake is smiling all of the time. Cooing and just amazing us with his personality.

Big Smiles for daddy on Father's Day!

Smiling at Mommy

Feeding
The feeding issues have been better. We decided to give him "snacks". Our problems have always been with volume for Jake. He gets hungry an hour before his feeds are due so we decided to give him 65mls during his normal feed (We were doing 60). He is doing well with that but still getting hungry so we are giving him 10mls about an hour before his feed is due which seems to sustain him and its not overloading him all at once. We are also slowly increasing his night feedss as well. We increase the rate by one/hour (10mls total) each week.

We had a first. Jake's G-tube fell out but Mommy and Mimi saved the day. Jake's G-Tube had been very red and purple and he would cry anytime we would touch it. When it fell out I noticed it did look irritated inside as well. I noticed it was low on the water and I put it back in with the correct amount. I also started putting an ointment we got at CHOP on it. It is better than it has been in a very long time. I had always had the doctor change it but was told can do it on my own and it really was not difficult. Jake has been so much happier since then also. So it was a good thing it happened.

Pictures at the Park
We recently had our photo's taken. Photo memories are very important to me especially now. Jacob is not able to go in public so I was not sure we would get pictures done however Deanna Pinkerman (a local photographer) met us at a local park. This was perfect, Jake got fresh air and we got our pictures. I am so excited by how good they turned out. There are so many beautiful pictures of the kids.

Click here to view our pictures

Way to go Mommy!
We took Aidan to see Toy Story 3 on Saturday since my in-laws were here to watch Jacob. When backing out on the way to the movie I side swiped my father-in-laws car. I felt so awful but called my insurance company and they are taking care of it. I could not believe I did that, especially since he even said "Do you need me to move my car or is it ok where it is" I said it was fine. Sheesh. Here is a picture of my handywork. Sorry Pappy!



It was nice having some time just for Aidan however I have to say that Toy Story 3 was a bit dark for little kids. It was almost like a little kid horror flick lol. Overall it was good and we all had a good time.



Thank You
I would like to thank everyone so much for the cards, words of encouragment, gifts and support. I am sorry I have not had time to send out thank you cards to everyone but please know that we appreciate everything and can't tell you how much it means to us.

Thank you to our family who has helped us more than we could ever repay. Thank you to Nichole's Church for cooking us meals twice a week. That is such a huge help to us. The days are so busy that cooking dinner difficult to do. Thank you to Nolan Road Baptist church for the walmart gift cards. Thank you to all who have donated towards Jacob's care and most of all Thank you for all of the prayers that have been sent up for Jake.

We love you all and are so blessed to have so many people who love and care about our family.

Mr. Adorable

The date has been set. Jacob will have his next open heart surgery on August 4th. We have to be in Philly by the 28th of July for testing. We will most likely drive up on July 26th, spend the night somewhere half way and drive the rest of the way on the 27th. Dr. Spray said that his last cath was so reassuring that he won't need another. If the echo shows the pulmonary vasculature well enough then he won't need an MRI either. If not then he will have the MRI on the 29th. If everything looks well then he will have surgery on the 4th of August.

They usually do this surgery between 4 and 6 months of age. The goal is for them to do it as early as possible because the highest mortality rate is between the first two surgeries, however they want the kids to be 12 or 13 pounds. Jake is already 11 and gaining a half a pound to a pound a week!

Jake's last cardiologist appointment went very well. Jacob is gaining weight and thriving. He is 11 pounds already. Dr. Heydarian said he should do fine with the Glen (Second surgery). He said that is the easiest surgery and its a piece of cake compared to the first one. Lets pray he is right! Both his cardiologist and pediatrician told me they thought his lungs sounded MUCH better. I plan to get aa pulmanary consult while in Philly. Hopefully we can get some answers and a diagnosis for exactly what kind of lung disease he has.

So proud of my little man. The G-tube although uncomfortable for him, has really done wonders with his weight. What I love is that he still wants to use his mouth. A lot of these kids have trouble eating because they never had to eat by mouth. I have always said I wanted Jake to keep that reflex and practice. We do a bottle once a day for about 5 minutes and he LOVES it. During his other feeds I dip his binki in formula and he can't get enough. If you try to feed him without doing that he cries. He loves the taste and want's to eat by mouth. If it were not for his breathing we could do so much more.


I contacted birth to 3 and they have assigned specialists to come and work with Jacob. One is Speech who will work with him on taking more by mouth. He also has a nutritionist, developmental specialist, coordinator and a physical therapist. We really need to install a revolving door in our home lol. Jake has a huge entourage of people for such a little guy. I am so glad we have this team looking out for him. I think it will be great for him developmentally since he is going through so much.

I am anxious to talk to the physical therapist because Jacob has always favored his left side and I am afraid it is causing some problems. Since birth he would move his head so he was laying on his left side. I noticed lately that he still favors that side. I try to switch him up but he always rolls back to that one. Jake has become a huge fan of the rattle lately. We have noticed that if you put it in front of him he looks, if you put it to the left side he will turn and look but if you put it to the right he has a harder time. I want to work with Physical therapy on strengthening that muscle.

Jake has also discovered his hands. He keeps holding his hands together and examining them. He also has become a big fan of sucking his two fingers. This comes in handy when the binki falls out. He is also cooing so much more and smiling all of the time. He is growing up so fast. He has such amazing eye contact and acts like he is taking to you. He is doing so great!

Aidan asked me what Jake was saying the other day and I told him he was doing "Baby talk". Aidan looked at me and said no mommy he speaks spanish lol. Sorry had to share that it was just too sweet. Aidan has been so amazing with his brother. He loves him so much and it just makes my heart melt to see him interact with Jacob.

Best Friends Forever

Too funny not to share lol

Well it has been a busy week here like always but we are loving every moment. Please continue to pray for our sweet boy as he gets ready for another surgery.

Here are a few videos we made tonight... Enjoy!

Date with Dr. Spray (Take two)

Spoke to Jacob's cardiologist in Philly. He is tentatively on the surgical schedule to have his Glenn the last week of July. It feels like we just got home and now we are talking about going back. They typically do the Glenn between 4 and 6 months old. Jacob will be 4 months.

The shunt is dangerous and can wear on the heart muscle so the earlier the better but they want them to be at least 12 or 13 pounds. Jacob is 10pounds 8 ounces now and gaining about a half a pound a week. If he keeps that up then he should definitely meet that requirement by then. So this is good news, and scary news. It will be so hard for me to hand my sweet Jacob over for yet another surgery. At the same time I know he needs this, I know he will be much more stable after this.

We will most likely go up 7 to 10 days prior so that they can do heart echo's, x-rays and any other testing they need. The social worker there is going to see if the Ronald McDonald house will let us stay there. Normally you have to have the child admitted to stay but since we will be required to go there early they are thinking they will allow it, if there is room.

I am going to also see if we can get a pumanologist to take a look at his lungs while we are there. At least maybe they could tell us why he has such trouble breathing.

Please pray for Jacob.
1. Please pray his heart continues to do well.
2. Pray he continues to gain weight
3. Most of all please pray for a smooth surgery and recovery!

Also please keep all of the other heart babies in your thoughts and prayers... Little Lorenzo who went to be with the angel. Bodie who is fighting a bacterial infection and back on the vent. Ruthie and Emma who are waiting for their new hearts. Jilly who continues to struggle. Zoe and Mia who just got to go home! And all of the other precious warriors and angels.

Sad Reminder

An amazing little boy lost his 13 month battle with HLHS yesterday. Lorenzo Trujillo is a baby whom I have grown to know and love. His mother was one of the first people to reach out to me and support me when I learned of Jacob's diagnosis. Lorenzo like Jacob had an intact atrial septum. Shannon had in-utero surgery to place a stint in his heart prior to being born. He and Jacob had many similarities. Lorenzo was a fast breather and he had a g-tube. Shannon was from Colorado but traveled to Boston to give her baby the best chance possible. Shannon has always been an inspiration to me. Her love for Lorenzo was never ending. Lorenzo did very well with his 1st and second open heart surgery. A few month's ago he started having trouble with fluid build up. He was hospitalized multiple times for chest tubes. Recently Lorenzo got viral pneumonia, he was in the hospital and was about to be discharged when he unexpectedly passed away.

My heart aches for this family. Please pray for their strength and for peace during this tragic time.

Hearing this sad news about Lorenzo reminds me about how fragile Jacob is. Sometimes I look at him and forget how fragile he is. His breathing has even become "Normal" to us so its easy to forget that this little child is living with half of a working heart. The littlest things from breathing to eating are challenges in his everyday life. Every time these beautiful children pass I am reminded that I may not have him forever.

There are no guarantee's in life however in my reality there is even more of a chance that my sweet Jacob may not out live me. This although unfair is my reality. Regardless of how long Jacob has, be it a week or a lifetime it does not change what I will do. I will love this baby like everyday is my last. Each and every person should do this with their child. Don't waste a second. You may be tired and want peace and quiet but remember that there are no guarantees and one day you may be begging for those precious moments. Soak them in and don't look at what you don't have but look at what you do have. Look at your children and hold them tight.


Jacob will never feel sorry for himself or feel disabled. I will make it my mission in life to give him and Aidan a life of joy and happiness. To not pity themselves but to take every day with gratitude and hope. To appreciate what they are given and to love life and live it to their fullest. I have said many times that I am blessed. Many look at us with pity but I don't. Jacob has taught me so much and for that I am blessed. For that I am the luckiest mom in the world.


Jacob's appointment with the cardiologist went well. He continues to say how well Jacob looks. He said if it were not for the breathing you would never guess he was a cardiac baby. He is so chunky and his color is great. I pray Jacob continues to thrive! Next week I have to call Philly and set up an appointment for testing. It is hard to believe that in a month we may be there for his second surgery. We just got home. However this is one step closer to Jacob being healthier.

I also met with birth to three today. They are a program that helps families with kids who may have delays due to a medical condition. Jake now has a nutritionist, speech therapist, physical therapist, developmental therapist and a care coordinator. We will all meet on July 7th. Our house has become a revolving door lol. I love it! I want Jacob to have every resource available.

Please continue to pray for my beautiful Jacob. And please keep my friend Shannon in your prayers. Please pray for all of these heart warriors and angels who fight a fight that all of us can't fathom. These babies are precious miracles from God and I pray for them all daily.

Thank you for all of your support and prayers...
Love,
The Baker Family