Sullivan Sideroads: 2010

12/28/10

Walk down memory lane

My sweet David is 8 months old today!

Each month I can't help but think back over his life and marvel at the events that have taken place. Our life is getting more and more normal. Or maybe we are just getting used to the medicine, feeding, mortor skill work, and doctors appointment schedules.

Just 6 weeks ago David had his 5th open heart surgery. That brings his total to 8 surgeries and 2 heart caths. Thank goodness they could do some of his procedures at the same time as others. This picture is of David's fourth EEG. It reported no abnormal brain activity and allowed us to get him off another of his meds. We now give David medicine only 12 times a day, down from 24! He's come a long way. Looking through pictures is painful yet therapeutic for me.

Sweet David around 6 months

David around 4 months

The amount of syringes we used daily!

Thank goodness he is no longer needing his two injections of Lovenox a day!

It's weird to think he started out with a g-tube hanging out of him instead of a g-button.

His liver is located over his stomach so they had to shift it and wait for it to heal before they could place a g-button.

Our best friend the feeding pump! Shocking the doctors David went from classified severe oral aversion to nursing. Unfortunately after 3 weeks he developed thrush in his mouth and his oral aversion returned. He is tube fed but can drink an ounce and a half by cup each feeding. He is also eating pureed baby food now! It's alot sloppier than my other babies were but he just needs to work on his coordination and oral muscle tone!

David at 4 months

David coming home for the very first time at 13 weeks!

The kids were thrilled to have him home at last!

We have many cherished memories of his first weeks home.

We were walking on cloud nine but also holding our breaths and dog tired!

David's big boy room. He was 2 days shy of 3 months when he was moved out of the ICU!

Days after his 7th surgery they let him try a bottle for the first time.

Andy loving on David before his stomach surgery.

It took months for us to see David with out anything on his face.

Four tries at extubation and a g-tube surgery.

David's first hair cut was the nurses shaving the right side of his head to put in a pick line. I was so mad. They had said it was going in his arm or groin. I learned to appriciate it's location as it allowed us to dress him in clothes without having to open lines and risk infection.

David wore little hand braces to heep his hands open.

We'd left David sleeping so sweetly around 11pm on his one month birthday. The nurse has surprised us by putting him in clothes for the first time. At 5 am the police knocked on our door and said the hospital had been trying to call for hours and we needed to hurry to the hospital. I'll never forget trembling as I called them. I had to dial 3 times. Once there they told us David was going to die.

My sweet Caleb had his 8th birthday the week of David's big crash. I remember trying to figure out when to have David's funeral without having it on Caleb's birthday or the day before, since Caleb's birthday fell on that Sat.

This was the day before David's pacemaker surgery. 72 hours after his big crash. Jentrey was saying goodbye. When I see pictures of myself during this time I just want to go and give myself a big hug and say it will be ok. But I wouldn't know what I know now if I had known how things would work out then.

Another thing I'll never forget is when I held David for the first time since his birth. You'd have to live through it to truly understand. 28 days! It was an eternity to watch your child go through so much and not be able to hold and comfort them. To go from feeling their every movement to nothing but a gloved hand or stroking their head.

Every Sunday we'd bring the whole family up to visit David. There was a four person rule but they broke it for us.

My first mothers day as a mom of 5! I gave David a bath for the first time.

Some of David's less gory bling.

After open heart surgery #2. They kept his chest open for almost a week afterwards and we could see his little heart beating through the clear yellow iodine patch.

The day I came home from the hospital was made sweet by the nurse who let Andy hold David for the very first time. I thought walking out of the hospital with out him would be my hardest moment but God was looking out for me.

2 days old. He had his 1st open heart surgery at 5 days old.

When David was born his eyes were wide open, he cocked his head and looked strait into my eyes.

It is a moment I'll never forget.

He's come along way and I feel like a totally different person.

12/23/10

Christmas PJs!

I made some PJs for the kiddos. I bought the fabric back before David's surgery. I started cutting them out but got stumped as I considered whether or not to cut our a pair for David. These pictures shout miracles to me!

Lately

Right now I'm feeling incredibly grateful. I feel strong able and excited about our future. If you ask me in an hour I may tell you I feel drained, tired and am wondering if I will ever be able to manage everything I need to be managing. This year has been one of amazing adventures, that's for sure. I feel like the spinning top is just about to stop spinning and as much as I will be grateful to not be getting more and more dizzy by the second, I am a little concernd about the top falling over and seeing what I'm left with! Thankfully just thinking what I am not left without fills me with courage and allows me to face whatever the next chapter of our life holds with optimize. At least for today.

David is doing great! He can hold his head up and is trying to learn to sit. He can drink milk sloppily from a shot glass and a sippy cup with no stopper inserted. he eats baby cereal in the mornings and a few bites of pureed foods in the evening. I brush his mouth and tongue with a towel or finger numerous times each day to help desensitise his mouth. He still doesn't like the bottle and tries to suck by placing the nipple of the bottle under his tongue instead of over. He's still trying to protect his throat, poor thing. It's been 6 week today, since his open heart surgery and we can now give him tummy time! He hates it, but since he hasn't been allowed to be placed on his tummy his whole life, it's no wonder! Most babies like David will sit close to age one and take even longer to crawl. Since he's just now getting tummy time I'm thinking at least 6-8 months will go by till he can crawl! He'll be like 15 months old by then! I'm just happy to get to savor my sweet baby!

Luke turned three on the 18th. He is pure sunshine! Yesterday David was sitting in the bouncer seat and Luke would grab David's feet and bash himself in the face with them. Then he would make great sound effects and fall to the ground. David was squealing and laughing at him. It was picture perfect! Luke also has started pushing around all his treasures in a laundry basket. The basket usually includes all his mickey mouse club house figurines and some balls! He also has taken to running around the house in his undies. Why he choose the dead of winter to start doing this I'll never know. His toes are always freezing and I can't keep clothes on the kid!

Jentrey will be 5 in two short weeks! She is so much fun. She is finally starting to do a decent job at her chores and had taken a liking to helping out. She asks to make peanut butter and jelly sandwiches for the whole crew! The big boys empty the dishwasher on alternating days. On the off chance that I need the dishwasher emptied twice in a day I'll ask her to do it. She'll always slump, tring to conceal her smile and say to the boys. "Aww man! I have to empty the dishwasher!..Me, all alone!" She jumps right to it and is soooo happy. She also says to me often "We can do that cause we're girls!" I love having her as my little girlie. She is trying her best to teach herself to read so after scolding myself millions of times for not taking the time to sit daily with her and practice, I have made great plans for our homeschooling in January and have bought some great readers for her and I to start practicing with. I can't leave off the fact that she is sooo fast when she runs! I really think she'll be faster than her brothers by summer! Boy, that'll make them crazy!

Anthony or Gabriel, depending on my mood, will be 7 on the 7th! He is reading great and stays up late most nights reading his big brothers books. He always wants to know how things work and why we do things certain ways. He is quick to obey and HATES being in trouble! The only time he causes trouble is when things aren't fair. Ok not only, he's also big on the NO GIRLS ALLOWED thing. One thing I love about him is that he is always ready to talk! Ask him one question and he will keep the conversation going FOREVER! It's amazing to hear the way his mind works!

Caleb is 8. He has really gotten big lately. Little kid games and jokes no longer amuse him. He won't be consoled with a little hug or a story. He is very kind to me and often surprises me with large cups of water when I sit down to pump. He always offers me the last cookie or slice of pizza. He is so gentle with David but has continued to bug me about getting to carry David around. I keep telling him when he's bigger! He can bathe the little kids and dress them in a flash! He reads to the kids and can clean the living room as well as I can! He's great.

Things are good for us. We look forward to flu season ending so we can actually take David out in public! This Christmas is going to be the best Christmas ever. Things may feel crazy at times and we may be really be hind on alot of stuff at home, but what's important is all in place and we feel truly blessed!