Jacob's cardiologist came back this week. Jacob weighed a whopping 12 pounds! His shunt sounded wide open which is great. He said Jacob looked really good and if it were not for his lung issues and the feeding issues he would have sailed through all of this. Everyone always says they can't believe how big Jacob is and how good he looks even though he has such a severe cardiac defect. The nurse at the cardiologist office has a grandson who is 3 days older than Jake. He has no health problems and Jake weighs more than him! This is highly unusual for heart babies. They are usually very small. I am so proud of my little peanut.
We only have one more cardiology appointment before we go back to Philly for surgery #2. His cardiologist is glad we are getting a pulmonary consult while there as Jacob's breathing is highly unusual for a hypoplast. We have been told how "unique" he is since day one. We know there is lung damage but we hope to find more answers as to what exactly that is.
FEARPanic has started to set in the last few days. It is hitting me that I am weeks away from having to hand my sweet baby over to the surgeons again. The first time Jacob had his surgery he was so sick. He was going to die if he did not get into surgery. It is going to be so much harder now that we have been home. We just got home 2 months ago. Since then we have adjusted to our new normal. There are days where I forget he is so sick. He looks like a normal happy baby. Other's notice he is sick because of his rapid, loud breathing. I have grown used to those sounds. Feeding time to others may seem difficult or strange. To me I am just feeding my baby boy. Bottle or tube I still interact with him as if anyone would when feeding their child. The meds also have become routine. I love my life, I love my baby.
Most of all we have bonded so much since being home. Jake has done so well and thrived. He has overcome so much. He has become very attached to his mama. He instantly calms when I hold him. His eyes stare at me, filled with trust and love. How do I hand him over knowing he will be in pain. How do I look into those eyes walk away as they bring him through those doors. How do I sit and wait while he is being cut open and his heart is being worked on.
I fear that his lungs won't be able to handle bypass. I fear the unknown. I fear losing my sweet baby who I love with my whole being. I fear Aidan losing the baby brother he has grown to love. I fear so many things...
FaithI know that without this surgery Jacob can not live. I know that this is what he needs. I know that it is not in my power. I know that faith can help me get through. I know that when my baby needs me I will be there. I know that Jacob has proven over and over that he is strong, he is a warrior. I know that he won't remember this. I know that this is what we have to do to keep him with us. I know that this will make us stronger and I know that I have done everything I can to give him the best chance at life and that I have to leave the rest to God.
Jacob continues to hit his milestones. He has sucked on his fingers for a while now but now he studies his hands with such wonder. I love watching him stare at them and move them around. It is amazing to watch his eyes and wonder what he is thinking. He is talking more and more everyday and that smile can light up a room. He smiles so big I expect him to burst out laughing.
Jacob and Aidan continue to bond with eachother. Aidan loves talking to his baby brother and loves to make him smile. He sings to him and tells me he loves him all of the time. I always hoped he would love being a big brother but I never imagined he would love it as much as he does. I am so proud of him. He is such an amazing little boy. He is also so smart. Yesterday he was playing with my mom's ipod and he spelled his name on it. He has been so interested in learning how to spell. We have pre-school time everyday since he can't be in daycare due to Jacob's health. He never tires of learning. I try to find ways to learn througout the day. We are working on writing letters right now. I am very blessed to have such great children.
FeedingJacob is growing up so fast and changing day by day. As I mentioned before he is gaining weight really well. This is amazing because he still is not even up to the calories he should be getting. He has always had issues with volume so we are going slow with him. He is getting about 20ml's less than he should be getting but still gaining what he should be. So everyone agree's we should not push him to much since he has surgery coming up. Plus if he gains too fast it could affect his breathing.
I have been raising his overnight feeds by a total of 10ml's each week. He has tolerated this very well. During the day Jacob has been getting hungry about an hour before he was due to eat. I had been giving him binki dips in formula to hold him over. After talking to his cardiologist we decided to raise his day feeds to 70ml each time. So far it has worked wonderfully. Jake has had no problems tolerating the food and is satisfied between feeds. It was just what he needed. It is so hard with him because I can not just give him a bottle and he drink what he wants. Instead I am putting it through his tube so the only way to know if it is to much is if he starts crying in pain and discomfort. Plus he has been gaining normally. It is all trial and error.
Birth to threeWe had our big meeting with all of Jacob's birth to three representatives. He does qualify to continue the program. He will have a speech therapist, a physical therapist and a nutritionist. The main focus will be getting him to eat more by bottle. Jacob also still arches when mad and he favors his left side. We also think that he may have some sensory issues from being in the hospital. He does not like to be in the carseat, take baths, change positions, basically does not like to be messed with. I think he favors the left because that was the side I always sat on when he was in the CICU. I plan to sit on his right side a lot after this next surgery. Maybe it will help. Until then I use a rattle to get him to turn that way.
They have already helped so much. Jake was crying during feeds but now we are pushing it in much slower and feeding him on the boppy or in the bouncer but no longer in the swing. This way his body is more elongated and he is more comfortable. He has not cried during feeds for weeks which is amazing. He does still cry after he eats at times but he calms as soon as I lay him on my legs on his belly. They said that may mean he is still having reflux even with the nissen and prevacid. We are going to leave his food volume as is for now so we don't put to much on him before surgery. After surgery the nutritionist will work closely with us to make sure he is getting the right amount of food.
Next Thursday I will be attending the American Heart Association's board meeting. I am excited to be able to share Jacob's story and reinforce why it is so important to raise funding for CHD research. I pray Jacob's story will open their eyes to what so many of our families go through on a daily basis. I will also be helping them with events such as the Heart walk, and the 2011 heart ball. I am very excited to be able to help raise awareness and support this great cause.
Making a Difference
Our local hospital is trying to raise funds to build a Children's Hospital. The closest children's hospital is 3 hours away. Our area really needs this. If something serious happens to our children they would have to be life flighted to Cincinnati OH, Pittsburg PA or Morgantown WV. That time could mean the difference between a child living or dying. I am really passionate about helping make this dream happen. I don't have to funds to contribute monetary donations but I hope to contact someone at the hospital and offer to share our story. I hope to help raise funds for them through this blog and my facebook page. I am also going to offer to write letters or speak to donors if they need me to. I just need to find out who I need to contact in order to do this. If anyone reading this knows how please leave me a comment.
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Well it is time I go to sleep. The kids will have me up in a few hours.
Please continue to pray for Jacob in the coming weeks. Pray his lungs will heal. Pray he will do well in surgery. Pray for his doctors. As always please pray for all of these precious heart warriors who continue to amaze and inspire us daily.