Thursday, September 26, 2013

Tyler's health at 4 months old (19 weeks)

Our little boy Tyler is 4 months and a week old (I think he's 19 weeks?)
When I hold him and snuggle with his little fuzzy perfect head, I just can't believe he had open heart surgery 18 weeks ago. Six days in the hospital with all kinds of tubes sticking out of him, breathing machines, feeding tube, C-Pap machine, wires & other horrible things. Six very long days. Sometimes I close my eyes and and imagine that never happened... but then I am reminded of the harsh reality of his condition when I change his diaper or shirt, and see his scar. His scar is part of him and it's a beautifully healed scar at that. But it's a reminder every day how much this little beautiful baby boy has been through in his short life already. It's a reminder of how blessed we are to have our little by in our life and that he is meant for big things in this world. It's a reminder that we have a lifetime of worry ahead of us.... worry about his future and 'what' could go wrong, or maybe nothing will ever go wrong with his repair and heart growth. Worry about the unknown.

Fear sometimes consumes me so much that I feel paralyzed. Fear takes over and looms over me like a dark cloud some days. The fear of losing Tyler. The fear of losing him to a CHD related sickness. The fear of never seeing his beautiful little perfect face again.
All parents have fears. This I know. When your child has a lifelong condition, it makes the fear that much worse. I hope over time it subsides, but maybe it won't. It's not the kind of fear that stops me from leaving the house or doing what I want to do, but it sure consumes my thoughts and keeps me up some nights needlessly. It makes me never want to let him out of my sight EVER.

This feeling is always in the back of my mind every day. So if you take other 'normal daily' stress and then combine it with the "Tyler" aspect, it makes my mind overload with anxiety some days. Some days I feel like the littlest thing is going to put me over the top and I am going to snap so easily. I guess there is only so much a person can handle at once, then something has to give. Sometimes it's in the form of me snapping at my daughter or my husband, crying, over-eating, or just not talking at all... and waiting for it to pass. On an ironic note, I don't let small things bother me (like I used to) since Tyler's surgery. I also feel like I'm more compassionate to other people's needs and try to put myself in their shoes now before being so quick to judge. I try not to be negative or try to stay away from that when I have control over it.

I am off (again) from work until October 3rd, and he will then start full time daycare on Monday 10/7. Tyler will be almost 5 months old when he starts daycare... and I am truly going to be devastated to let go of him and send him away from Mama & Daddy. Luckily he will be going to the same woman that watches Julianna right now at her house, whom we love & trust completely. In the meantime, I'll enjoy these last few days off with him.

In other news...
Tyler had his 4 month 'well visit' to the pediatrician last week and did very well. He took all of his vaccines like a pro with just a little crying. He is 14.4 lbs and 24.5 inches tall. He is about 20% in weight and 12% in height. A little on the small side but making good progress overall - the doctor is thrilled with how much weight he has gained since his last appointment!

Some milestones Tyler has reached at 4 months
(My reason for milestones - I am so happy I kept track of Julianna's milestones in my blog because I truly enjoy looking back now to see what she was doing at this point in her life, and I do plan on printing out her first year and also his) 

  • Self-entertaining himself. I can lay him down and he keeps busy by holding a toy, looking at his mobile or eating his hands. 
  • Sleeps 10 hours at night
  • Takes about 6 oz of formula every 3.5 hours. Not in a hurry to try solids - maybe in the next week or so. 
  • Takes 3 solid naps of about 1.5-2 hours each. 
  • He has full on conversations and laughing - He talks A LOT! 
  • Does good with tummy time but doesn't love it. Rolls from front to back (but gets very confused! why it happened!) 
  • Holds his head up very strong and looks around all over the place. 
  • Likes peekaboo and laughs at me - he just loves his mama and daddy! He is the happiest being in our arms. 
  • Faces forward in the Beco carrier (Love that thing!!) 
  • Loves sitting on our lap and looking around - the best thing ever for him! 

Here are some random iPhone pictures from the last few weeks ....

Wagon ride that Julianna loved going on! (She's in the back) 

I feel that I need to mention Daddy picked out her 'matching' socks. 

One last plug for our CHD Coalition Walk - We are walking for Tyler and all the Congenital Heart Defect babies just like him this coming up Sunday... We are walking for CHD research. One in every 120 children are born with some form of CHD and yet there is no early detection for this or known cause yet. This needs to change. Please help us by donating IF you can. For those of you who already did, thank you from the bottom of Tyler's heart! No donation is too small. God bless! (Click below for details)


  1. First of all, I laughed that you pointed out your husband picked out the socks. Mine has done the same and I always want to put a sign on Kylie saying that I wasn't the one that dressed her!

    So sorry about your fears, I'm sure it is normal for what you have gone through. I can't even imagine how much you worry, I know I worry and luckily Kylie has been healthy. Maybe there is someone you could talk to about the fears, that could make you feel better? I would think as time goes by and you learn more about his condition then you might not worry as much.

    I need to look into the carrier you have. I didn't use anything with Kylie, but I think having one for baby #2 will make things a lot easier.

    Enjoy the rest of your time off with Tyler!

  2. Goodness, your kids are gorgeous. Their complexions are stunning. I can't imagine having to deal with a chronic issue.... i let the little ridiculous things stress me out (that really don't even matter!) and your posts really provides some perspective. xoxo Hugs to that sweet boy!!

  3. Not being a parent, I can only imagine the stree that your baby's health crisis brings on. I think you're doing great. There
    is no way to go through this without a lot of stress.

    Maybe the other parents in the CHD support group can be of help and provide suggestions on de-stressing techniques. Can
    you call each other to talk? That might help in between meetings.

    I went through having a very sick partner so I know the stress of that, and having friends to talk to was the lifesaver. Also, a
    relative was extremely ill -- iw now okay. But I started being compulsive about how I folded my clothes to put in drawers and
    about hanging up clothes in a very exact order for awhile. I was told that this was normal, and that people all over the
    world react to stress like this in different ways but people do react. We wouldn't be human if we didn't.

    So, I'd suggest talking to other parents and friends and finding ways during the day to focus on some relaxing things.
    The photography is great, and always gorgeous.

    1. THanks KAthy - yes it does truly help to talk to the other parents and I also belong to a couple online groups for parents of CHD kids. I haven't called anyone - yet - but I also need to know someone well to call them - email works better for me (sounds weird right?). We all do react to stress differently for sure. I am a compulsive cleaner when I am stressed haha! I whip out the bleach and the soap and go at it! Those are the things that have gotten me through this stuff most times. THere will always be days with more stress and/or sadness of course... and you just get through it and move on... that'a all you can do. I love getting big hugs from my daughter and giving my son a big hug - that has more power to heal than most anything else ever could! :)

  4. Oh, do I ever wish I was a compulsive cleaner, times of stress or not! I just fold and hang up clothes in order and throw out papers.

    I'm sure that in addition to talking to other CHD parents and your friends, too, that hugs with your two adorable children are the best
    de-stressers and are so healing. .


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