Wanna See Something Scary?

So, a much belated update. Jack is now on the move. He has mastered crawling and is on to pulling himself up on furniture and cruising….and climbing the stairs. We have made a small investment in baby gates, especially since and addition of a new playroom on the second floor has become a large motivator for climbing.

This past weekend, he also had the chance to meet more members of the family. We all went to Brian and Mandy’s (my cousins) baby shower. They’re having a girl!!! Congratulations on your little Paisley. And your party motif was so cute. Sorry for eating all your Sixlets.  : )

Needless to say, Jack enjoyed all the attention and spent most of his time oggling at his beautiful cousin Cecilia, though he certainly didn’t think Courtney was hard on the eyes either. He does love the ladies.

We also have a new development on feeding. Though he is doing great on his oral feeds in regards to volume and calories, he is still trying to gain a little weight that was lost from a rotavirus that he had back in February. Paired with an attempt to wean him off of night feeds for safety reasons, we are slowly increasing his calories per ounce on his formula feeds. We are up to 26 calories/ounce from 20. The highest we can go with his current Pediasure is 30 calories/ounce, so we are almost there. Then we will turn off the night feeds and be pump free! just boluses during the day. Then after he gains his weight back, we will talk about weaning them too.

It is truly amazing how he is growing and learning. There were many times that I thought we would never get to this point. It’s a great blessing to worry about all the normal stuff like ‘baby-proofing’ and fighting with a picky eater. And to tell you the truth, I still do take a moment to listen when to him crying sometimes. It reminds me of his extubation when we heard him cry for the first time. I think it allows the frustration of a crying baby to set in a little slower.

About these ads

Jack’s Easter Egg Hunt

Here is some footage of Jack and his Easter Egg Hunt this year. He really likes the eggs with coins in it. I would also like to take this time to give a special thanks to Sharon, who sponsors the Easter Egg hunt for all the kiddies. Your kindness is amazing.

Enjoy!

 

Happy 1st Anniversary, Jack

March 21, 2013

Jack,

Today marks one year since you were brought home from your long and tumultuous beginnings at Children’s Hospital. Though you had a home in my heart from the first day I found out I was pregnant, you had finally settled into your own space in our family home. Even with all your medical equipment, it felt so natural for you to be there, with us. Though I had my occasional doubts and fears, I always knew that you would choose to be with us. I could see it in the way you looked at us through your squinty eyes after those first few days on ECMO. Or when you would give us a sheepish smile when we walked to your bedside though you were in obvious pain. And especially when you were well enough to get out of bed to play and laugh with us.

Today, I find myself thinking about all that has changed in the past year. It shows in every aspect of my day. For starters, today is a blustery 35°F…Last year was 82°F. Today, I am spending most of my time on Excel, last year was the second day of a two-week leave from work to spend time with you. Last year, you were coming home on continuous oxygen, with continuous gtube feedings and an ileostomy bag. You were fragile and scary and I was intimidated and unexperienced. But, today you are oxygen and ileostomy free. You are eating half of your calories by mouth and getting scheduled boluses by gtube. You have no tubes or lines that we trip over. Now-a-days, we travel with only one diaper bag. And you have grown into an intelligent and independent young man. You amaze me daily with all the information you process and demonstrate through your signs, words and actions. You are becoming a boy with ideas and desires and demands.

But there are also things that have not changed in the past year. You still look at your Dad and I as if we are coming to rescue you from world-ending boredom. You are excited when we walk in the door and greet us with blown kisses and an excited shriek. You still have that determined look in your eyes when you attempt something new and make discoveries.

And you still have that home in my heart.

You have made my world into a place where it will all be okay at the end of the day, no matter how the day starts. Where reading The Hungry Caterpillar for the 40th time is still exciting, and cinnamon animal crackers could fix all the world’s problems.

I have thoroughly enjoyed this past year learning who you are and am looking forward to spending the rest of my life seeing who you become.

I love you,
Mom

We Know Jack: The Trailer

I have finally put together the official trailer to “We Know Jack”. It was tough to revisit some of this old footage and see how sick Jack really was. It is helpful to take breaks from the film to actually watch and play with Jack now, and see how wonderful he really is. The experience, though stressful and scary, was totally worth it. Hope everyone enjoys. I plan on having the full documentary in the Fall of this year (2013).

Disclaimer: It is a tear jerker, so you may not want to watch at work. I have seen it 20+ times and it still draws a little water works.

My Resolution for Jack

I’m not usually one to start resolutions because I don’t deal well with failure. So, this year I am doing something a little different. My Dad has always told me, “If you don’t like you’re current situation, change it”. And here is my plan. Though I am not going through a tough time in my life (no tougher than the past year and a half), I still feel like there are many areas for improvement. For that, I have started a Do, Be, Have journal.

What is that?

A Do, Be, Have journal is something that was shown to me by a past fellow colleague during a ‘motivational’ presentation. It is a list of things that you would like to do, be and have. Pretty simple. The hardest part for me is to keep up with the journal and actually try to meet some of my goals.

One of my ‘Do’ goals is to feed Jack a more nutritious diet. Currently, we are feeding him anything that he will open his mouth for. This is crackers, anything with even a hint of cheese flavor, and convenience foods such as Chef Boyardi, Gerber microwave meals and Spaghetti O’s. Notice there was no mention of whole grains, fruits or vegetables? So, I am going shopping tonight after work. The items on my list are eggs, sliced cheese for grilled cheese sandwiches, apples (a cold apple slice would be perfect for a teething boy), tuna and whole grain waffles from the freezer section. I also need to add in some veggies which he has never been a fan of, so I will start hiding corn and peas. Meats have never been a problem so I will have to shift to more ‘healthful’ meats like lunch meat and chicken nuggets. This would be a great time to add in proteins from beans and legumes.

And here is where you can help us succeed. Do you have any suggestions for a picky eater with the eating development of a 6 month old?

Happy New Year!

I know it is past the holidays, and I am sure the last thing you want to be reminded of is Christmas (Kaytee), but here is Jack opening gifts for the first time at Home. There is also a little surprise at the ending for everyone. Enjoy.

The Second Plight of Croup

I have played the last couple days in my head over and over and am not sure how to start the story. I read back on my last post and feel like I jinxed myself with my own words. “ I have to admit, I have been enjoying this mundane life of ours lately.”

Jack is currently making a slow recover from his second episode of croup. His surgery that was scheduled for this Tuesday is being rescheduled and we are trying to take it easy in the Roettgers’ House this weekend.

During the day on Wednesday, I received a call from Jack’s in-home nurse stating that she thinks Jack had a mild seizure lasting approximately 10 seconds. During these 10 seconds, Jack’s lips turned a purple-blue. Following the possible seizure, he was dazed but calm and reactive and had regained color. He continuously signed that he was ‘all done’. My mom and Jack’s nurse loaded Jack and an oxygen tank into the car and met Matt and I at Cincinnati Children’s Hospital Emergency Department. Jack seemed a little sleepy to me but was his old self. He fixated on a baby girl also waiting medical treatment in the waiting room. He gave her his ‘eyes’ and blew her kisses. It was my first view into what I can only imagine will be his tumultuous relationship with women. He does have an eye for nurses (You know what I’m talking about, Shannon and Rachelle from the NICU).

The ED doctor we finally saw thought his episode was not a seizure due to the absence of a postictal state but couldn’t explain the shaking or loss of oxygen saturation. A x-ray taken showed that there was no concern for diaphragmatic reherniation and we were sent on our way. When we arrived home, all our clothes and other belongings were cleaned thoroughly to get the ‘ED flu season funk’ out. Jack finally took a nap.

Thursday started out as any other day. Jack’s second nurse watched him closely and reported that he was doing fine all day. He was attentive, happy, playful, ate well and took great naps. By the time Matt and I arrived home, Jack had managed to find a little mucus in his airway that was rattling around. He received two Albuterol treatments, a hot bath and enjoyed some back taps while watching a couple of night-time cartoons. By the time he went down for the night, his lungs were clear and he had no issues falling asleep. Matt went to play basketball and I went to bed, which is our thursday night ritual.

About 11:45pm, I was awoke from a deep sleep to hear Jack wheezing and gasping from his room next door. I ran in and disconnected his overnight feeding pump. I recognized the wheeze and cough instantly as croup. Any parent of a child who has had croup will say that the cough is unmistakable. Eery even. I picked him up and grabbed my phone to make a hurried call to Matt. This was a two person job so he would have to make it home quick. Luckily, he was already on his way home and would be able to assist me soon. I made my way downstairs with Jack in tow, kicking and gasping, coughing and wheezing. I tried to sit him on the floor while I wrangled the travel oxygen tank but Jack didn’t have the patience or the lung capacity to sit and threw himself lying on the floor. At least he can’t fall from those heights so I continued to fight with the little oxygen tank and its stubborn plastic tubing.

And then there was silence.

I looked at Jack’s face to see closed eyes, a sullen face and the color blue. He was rolling his head from side to side but making only the little noise that his hair makes on the floor play mat. I lost all feeling. I dialed 911 and continued to fight with the oxygen tank but at this point, the plastic tubing was like an intricate gold chain heirloom. Fragile and tangled. And lost.

Armored with my cell phone, t-shirt, pajama pants and absence of socks, I picked Jack up, unlocked the front door and stood on the concrete front porch. I explained to the 911 dispatch that Jack was not breathing, had turned blue and was only giving a little wiggle. He gave me instruction to stay on the front porch in the cold air and keep Jack upright. The cold air would help loosen the inflammation in his airway and the upright position would allow him to cough up any fluid blocking his airway. As I listened to the dispatcher’s instruction, I began to pray that God would take care of Jack. Even if it meant taking care of him in heaven. Jack was getting heavier. I started crying harder and hugging stronger. I was pleading with Jack to keep trying. He needed to start breathing in some cold air. I turned my body to look down the street for any sign of ambulance lights when Jack started to squirm. When I had turned, the porch light shined directly in his face; of which Jack is not a fan. In complete discontent, Jack let out a loud wail and started to cry. Crying meant he was breathing. This would be the second time in my life that hearing Jack cry was music to my ears. I kept the light in his face until I saw a car yield to an ambulance down the street. I recognized the headlights as Matt’s Camry and became unbelievably calm. A crying baby and your husband following an ambulance to your house does wonders for the nerves sometimes.

I filled the EMTs in on the current situation and all about Jack’s medical past. Matt joined Jack in the ambulance where the oxygen worked and I went to get some shoes and a coat on. We were headed to Children’s again.

Once we arrived at Children’s, the night become so much easier. The staff gave Jack a nebulizer treatment and an oral steroid. Like the previous time he had croup, this treatment cleared him up almost immediately.Over the next 5 hour observation period, he became more clear and actually took a little one hour nap as Matt and I continued to watch Disney Channel.

Today, he is working on his third nap but is starting to feel a lot better and even giving some smiles occasionally. The next time Jack is rattle-y, I am cutting out the drama and heading straight to the doctor’s office or ED. My emotional well-being can’t take another occasion with a blue baby.