Defeated, Angry and Thankful

The past couple of days and nights have been a little rough. Jack is having some serious acid reflux as a result of GERD. This, unfortunately is one of the many diagnoses that follow CDH. It has been keeping him up at night (and us as well) and keeping him fussy during the day. He is now refusing to eat anything orally and is relying completely on continuous feeds into his gastric feeding tube. I have been in contact with the High Risk Clinic at Children’s Hospital who is responsible for Jack’s general care until he is healthy enough to rely on a pediatrician. Side note: I hate that last sentence. But then, there are a lot of things I hate as a result of CDH.

The solution to Jack’s reflux is to increase his Prevacid by 100%, which at first I thought seemed like a large increase until I realized that most 5 months olds are not prescribed Prevacid, therefore making this an unusual circumstance from the start. It’s been a full day on the new, increased dose but he is still refusing bottles. I’m at a loss. Every time I offer him a bottle, I put the nipple in his mouth and he just looks forward, with a lack of focus and lets the milk drip into his mouth. He does not swallow but lets it dribble out the side of his mouth when I remove the bottle. There is no effort, no desire to drink. I just don’t know what to try anymore. But I know I can’t give up. He will eventually have to start eating orally, and I would be doing him a serious disservice if I didn’t help him develop.  So I have to get past the fact that I feel completely out of control, defeated and depressed. I have to keep myself from getting angry at Jack’s lack of effort and at God for putting us in this situation. I have to ask, “Why us, why now” another day. I have to put my faith back in God, back in Jack and back in my patience and try again tomorrow.

And just if you were wondering, Matt is being very calm and patient about all this. I am jealous. I wish I had half the confidence that he has sometimes. My biggest fear right now is that I will not be able to fill the void with parenting that CDH has caused and Jack will suffer, even the slightest. But Matt continues to work with Jack and never shows any frustration in his progress to develop. I’m glad that I have Matt to lean on and help me collect my thoughts to regroup.

There is some good news at the end of this sad rant of mine though. After all the difficulty that Jack has been through with CDH, GERD, chronic lung disease, complete tracheal rings, perforated bowel and obstruction (twice), collapsed left lung (I could go on all night), Jack is kicking A-S-S on his oxygen requirements. We are working with him having windows off his oxygen which should be about 1-2 hours as long as his oxygen saturation does not drop below 95%. He was off his oxygen for 5 hours today and didn’t drop below 97%! Now, this has happened quite a few times in the past week and a half but today, it was extra special. I needed this little something to cheer me up and give me just a little more momentum for tomorrow. So…wait no further. Feast your eyes on a couple photos of Jack enjoying some time with room air.

What a beautifully naked face. He’s sleeping now, so I hope this will get him back to sleeping through the night. Cross your fingers.


11 thoughts on “Defeated, Angry and Thankful

  1. The kids, Dave, and I are all “OOoing” over that most adorable naked face of his! Yes, indeed! We love you Jack! You are an inspiration Kaytee, and a very special mom. We are super proud of you and Matt, and thankful to be able to read about how you are all doing. So, thank you.
    All our love.

    • I’m happy to be writing about how well we are all doing. Jack has been a big reason why I have an improved look on life (and less sleep). He’s certainly putting a hop in my step.

  2. Welcome to motherhood, where everything is scary (you just get it all multiplied) I’m glad you and Matt have such a strong relationship and can lean on each other. I think your the strongest mother in the world but I may be bias. Love mom

    • Thanks. I sometimes feel like I’m the most manic mother in the world so it’s nice to hear that I may not be all that off the mark of a ‘normal’ mom and her ‘normal’ concerns.

  3. Proverbs 31:28-29 Her children rise up and call her blessed; her husband also, and he praises her: “Many women have done excellently, but you surpass them all.”
    You are an amazing mom and woman. Matt is a strong man. Together you can do this! Thanks for sharing with us and know that we love all of you. Love the pics!

  4. When my children were born healthy and full term, I worried about them every second. I can’t imagine your very real fears. I have no answers about why God would put you in this situation, but in the 10 years since our first baby, teaching preschool, and working with families I have learned that God made you Jack’s mom and he is in the very best of hands with you. You are the best mom. The best mom for Jack, and Matt the best dad. It seems you have both learned so early in your parenthood journey about fighting for the needs of your little one. There’s no doubt about that in the grand plan. God Bless each of you.

    • I certainly know that we are dealing with different issues than parents of a ‘healthy’ baby but at this point, this is parenthood for us. But I do agree with you that Jack was given to us because we can handle this. If Jack was with a different family, he may not have had the same outcome. We are all happy and thankful to have eachother and the opportunity to learn and grow from this.

  5. Kaytee you have such a beutiful boy! I cant wait to meet him! Im so glad your doing this blog, not only for other mothers struggles but for a day to day encouragment! Thanks!!
    Your cousin Courtney!

    • I am eager for you all to meet Jack as well. He’s starting to make his way out into the world since flu season is officially over. I think he will have to make an appearance at the Lake House soon for some ‘Family in the Sun’ time.

  6. Dave, Matt and I definitely appreciate you and Debbie taking care of Jack for the night while we went out. We thoroughly enjoyed out time out. He is a handful with all his accessories, medications and special care, but he is an absolute joy. I’m sure you can agree with that.

    He is strong, and stronger than most of us will ever have to be, but he is a sure inspiration if we ever find ourselves in that position.

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