Shabby Blogs

Monday, June 27, 2011

Why us? Why the sweet children?

Two questions Jackson and I frequently ask, still don't understand and will probably never know the answer to. When I look at Jack's sweet face I would do anything to make his defect mine. Nothing could have ever prepared us for this, and trust me, we tried. This experience has not just been the battle of his heart, it is so much more.

The other families who are going through this all have their own ways of dealing. Some are negative and can find something wrong with everything. Some just avoid others, almost have a transparent appearance and won't even crack a smile. Then there are ones who want to talk and share their story, listen to yours and pray for you. Jackson and I fell into the last category and we met several others like us, one family in particular. When we were in the PCICU we were told we needed to meet the Smith family, they were a lot like us. That day finally came and we did have a lot of things in common. We would run into them and they always asked about Jack and we asked about their sweet baby Emerson. We were floor ready about the same time and I had expressed that I was dying to be with Jack and they offered me their place because the didn't mind staying a bit longer in the PCICU. Emerson was almost 3 months and had been to the 8th floor before. She had some complications and had to return. She was a hypoplastic left heart and I have to tell you the left is a beast.

When they saw us on the floor they were so happy for us. We talked about how much our babies slept, their progress and more. On Saturday Jackson had been out in the hall and came back in to tell me they were taking Emerson for a stroller ride and how cute she looked. That evening I walked out to get some ice water and heard her sweet father talking about how they chose her name. They just liked it was how I understood it.

Sunday morning when I woke our room door was open. It looked as though our nurse had left our room in a hurry because all her equipment was left behind. I laid there wondering if she was going to return, waited a bit, then got up to close the door. Shortly after some of our favorite nurses started to stop by and I could tell they had heavy hearts.

See this is what you can never be prepared for. Yes the surgery, the status of your baby changing everyday, the challenges of feeding, the constant worry you cannot prepare for but people tell you about those. They don't tell you about the relationships and loss. We were not prepared to hear that Emerson had passed that morning.

Jackson and I have had such a hard time with this. It made us ask those questions again. Why us- parents who are so loving, responsible- why do they have to go through this. Why them- why does an innocent baby have to hurt, battle for their life. It hurts more than I can describe and I cannot tell you how precious each breath and every heartbeat.

Emerson is an angel now. It brings me back to a story I read while I was pregnant.

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves." -Author Unknown

Emerson's heart is whole again.

Jack is doing well. He will probably have a minor surgery in the next week or so to put a G tube in his stomach. The feeding is very hard for these babies and it could take months before he can take the volume he needs. When he drinks from the bottle it exhausts him and he falls asleep. It was described to me as running a marathon. It takes a lot of training. The G tube will allow us to work on the feeding at home. Ahhh.... Home.





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Saturday, June 18, 2011

Ups and downs

Jack is doing amazing! We are down to only a feeding tube and the leads that let them know his heart rate, respiration rate, and oxygen levels. This is awesome because now we can hold him anytime we like!




We are also floor ready and waiting for a room. We love the PCICU nurses and doctors (best in the world in our opinion) but we want to be 24 hour parents we are dying to be. We had our hopes so high we would move up today but the doctors told us they do not like to move the single ventricle heart patients up on the weekends.

Our newest challenge is Jack's feeding. We have officially made four attempts but he tends to get choked on the milk. We are working on the coordination of sucking and swallowing. He has the pacifier down, but when the milk is involved it throws him off. He is going for a swallow study next week just to make sure his throat is doing the right things. Sometimes after heart surgery nerve damage can occur and cause swallowing issues. Praying we are just having coordination issues.

So here are some of out latest pictures. The nurses love his hair in a mowhawk! Last night I changed his hair dew and when we returned this morning we were mowhawked again! It is cute on him though!















Tuesday, June 7, 2011

Finally a short update

Hello! I am so sorry this is the first time I have updated. I have missed so many calls and texts because cell servIce has been spotty but more than that we have been on the fastest roller coaster of events ever. Jack was born Wednesday late afternoon at 8 pounds, 13 ounces. Quite a boy. I am still recovering from the delivery because I fractured my tailbone, which is apparently not uncommon when women deliver large babies. It was all worth it though!

Jack has been doing very well. He had a heart cath on Saturday to rule out the very scary coronary artery restriction. He does not have it and if he has there would not have been any surgical options to save him. Heart transplant would have been it. Fortunately we have not been faced with that because after his BT Shunt surgery yesterday his EKGs and echoes look great. We are not completely out of the woods yet because we have to see how he does as they begin weening him off all the tubes and medication.

I cannot explain how exhausted I am because of the stress and worry. Please keep Jack in your prayers. I will try to be better about updating y'all but at the end of the day I am so tired I don't want to even talk about it anymore. I will write more about his birth, heart cath, surgery and recovery. I just need to get him up to the 8th floor first. That means we are closer to coming home.

I have included some pictures of him after surgery. It was not nearly as bad as i thought it would be! He is still so beautiful beyond all the tubes and tape! And yes he does have his hair in a mowhawk. The nurses love and fight over who gets to take care of him. One of our favorite nurses gave him his last surgical bath and fixed his hair. When he came back the OR team must have loved it too because it was re-fixed that way. :)



















- Posted using BlogPress from my iPad


Sunday, June 5, 2011

Showing off













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Thursday, June 2, 2011

Announcing

Jackson Paul Babcock
"Jack"




June 1, 2011
4:19 pm
8 pounds, 13 ounces
19 1/2 inches