That Elusive Thing Called Sleep…

posted in: Apollo | 11

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Any and all improvements made in the night-time sleep department seem to have vanished. We saw a slight increase in night-time sleep when we switched to a high fat diet for Apollo…but slowly that has crumbled away until he is back to waking three or four times a night. And worst of all it sometimes takes 30-45 minutes to get him back to sleep…Yes, I am dead, dead, dead tired. And I've been sick for over a month with a cold (or something) I just can't shake. Probably because I can't get more than two hours of sleep at a time.

I'm also incredibly discouraged about Apollo's eating. It is work, work, work to get him to eat enough to not walk around hungry and grumpy. He ends up eating at least one of these a day, just to fill his tummy. Unfortunately, they are fat free. My theory is that  while he can eat regular, solid food, whatever is obstructing his trachea makes it too much work to eat enough…hence him eating the pureed baby food. We've had zero luck getting him to drink: goat's milk or high calorie formula. I did have some success with this Odwalla Superfood juice though. It is an incredible amount of work to get him to eat and I have no idea if his night waking is because he's hungry, in pain (from reflux) or just in the "habit" of waking. We are still five weeks off from his next visit to the pulmonologist and if he simply sends us on our merry way again without trying to find the source of the suspected obstruction, I may just cause an obstruction in his trachea.

And on that note, Apollo's "wet" breathing sound is often absent now- definitely a good thing. He now however gets noticably "out of breath" if when he cries or runs around. It is disturbing to see your one year old wheeze and retract from simply playing like a toddler.

{If you're new here you may want to read this update on his health}

And for those of you interested in my recent post about Avi, you may want to click back to that post…I responded to some of the comments and added a few things I forgot when I was writing it up}

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11 Responses

  1. Will he not drink the pediasure canned stuff? That may be something you tried. We tried some toddler formulas and failed, so the doctor ordered pediasure for my son. He didnt eat anything but goldfish crackers from about age 19 months to age 3… I mean he ate bites here and there but refused all food for the most part. It was pretty scary, his ears hurt him and drained and we didnt know it. He was on pediasure and I learned that he didnt notice pureed veggies and fruits so he was on a liquid and goldfish diet. I dont know why he ate the goldfish, seems they wouldnt have been fun to swallow with a sore throat but maybe they dissolved well, or he just loved them and they were worth it. Once tubes went in, he ate and still eats a huge amt. Not the same as Apollo health-wise but it was a frustrating situation, he just didnt grow or thrive. He did well on pediasure though, especially with my sneaky additions.

  2. My son Cade has had growth /eating issues since birth at 33 weeks. He has a hard time gaining weight and continues to hover at the bottom percentiles in height and weight. He also spends lots of time grumpy because he is hungry and can’t find anything to eat out of lots of choices. He is now 11. I now make a potato soup with butter, carrots, onions, celery and evaporated milk every week and he eats tons of this. I know Apollo can’t have dairy…so ???? I will continue to pray for Cade and Apollo to thrive. Be very forceful with the pulmonologist. You are your child’s ONLY TRUE ADVOCATE. Hang in there…..

  3. Jo- he wont drink pediasure or anything else. The only thing Ive had success with is the Odwalla juice in his special open top cup from the occupational therapist. Believe me, if a bottle of anything would make his sleep at night Id do it 🙂
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  4. About two years ago, I found out I was pregnant with my 5th child. I was over the moon happy! A few months later, you posted on your blog that you were pregnant, too. We were due at about the same time. It was fun reading about your pregnancy as I was experiencing many of the same things as you. A few weeks later, though, my baby boy died. It was crushing for us as a family. We are strong Christians but, after this experience, we were crippled with fear, wondering, disbelief, and so much more. It was the lowest point in my life. Since that time, I am so happy to say that God has restored my hope in Him, helped me in so many ways, and given me another baby. I will never take her for granted – I love her and am ever so thankful for her every day. Even so, I know the night wakings, feeding issues, health problems, and exhaustion are very real concerns for you: but please be encouraged just a bit today that you have Apollo in front of you. Hold him, tell God how thankful you are for him, and cuddle him. He is a gift. One more thing: one of my other children struggled with intense vomiting e.v.e.r.y time she nursed. We did everything we knew of to keep food in her, but she just vomited all the time. We tried different diets, doctors, food, supplements, well … you understand. Guess what worked? I decided to treat her nursing sessions just as I treated the rest of our family’s meals. Before we eat, we take a moment to thank the Lord for His provision as well as asking for His blessing on it. So everytime before she nursed, I asked for His blessing on her “meal”. It wasn’t immediate, but her vomiting has completely cleared now. I’m sure you’ve prayed for Apollo, but I wanted to encourage you to be diligent about praying before every meal of his. The Lord has designed Apollo’s body to eat and be nourished. I will commit to praying for you as well. Keep up the great work – your advocacy for him with the doctors is very inspiring.

  5. Sorry to here improvement is still not showing it’s face. Really wishing for good meals for him and sleep for BOTH of you!!

  6. please, please, ask for an echocariogram .

  7. Rebekah- I am so sorry to hear of the loss of your little boy. I cant imagine…except that Apollos life has been on the line twice: during his cord prolapse and when he was close to death with Pneumonia and RSV and I saw fear in this doctors eyes and realized the Dr. was afraid he was going to die…thank you for the reminder of how fragile life is, and yes, believe me, I am thankful for his life every single day. Getting up at night, his feeding issues, going dairy free to keep nursing him, I am happy to do it all….and I am so glad to hear that you have been blessed with a little girl!
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  8. ssmazzon- thank you for the encouragement to keep being that annoying mom…
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  9. Rachael Spencer,RN

    I, second, cecliy please ask for a cardiology consult. Being short of breath after a small amount of activity could definately be cardiac related. He could have an undiagnosed congential heart defect. An Echocardiogram is simply an ultrasound of the heart so very non-invasive but could offer up answers. Think of your family often.

  10. Rachael- thank you so much for this! I was trying to figure out how to convince my dr. to look more at this heart. He doesnt want to because he has no mumurs, etc. I love our doctor, but the reality is there is an art to working with them…Your comment made me realize I can go in and let him know I want his heart checked out due to his shortness of breath- which he never had before…thanks.
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  11. So soryy you are going through all this. Poor Apollo. Hope you have a better meeting with the plumonolgis next time you go.

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