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 BeautifulJacob 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
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
Your pics are awesome Kathy. Great job on the blog. You will LOVE this more and more as your boys get older and you can look back. I've done the same on my blog and am so happy i started it when i did. Take care. -c-
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