Tuesday, December 13, 2011

The scale is not our friend....

December 9 was the 3 month anniversary of Henry touching down on American soil....

to a land of abundance and plenty....

he weighed 13 pounds 6 ounces.... not even on the charts (less than the 1st Percentile) for his age in weight and height....

we thought that would soon change....

The staff at the orphanage had said he could drink from a regular bottle......


Our first feeding on September 2 ("Gotcha" Day) took almost an hour of coughing and sputtering to feed him 3 ounces with a regular nipple, which is not surprising since he has a cleft palate and cannot create any suction...

I had brought a special bottle to Ukraine known as a Haberman feeder, which I knew from my years as a La Leche League Leader is used to feed cleft palate babies. It has a special valve to create its OWN suction and releases milk far back into Henry's mouth with only a tiny pit of pressure....

Here it is....with some with my breastmilk - I was still nursing my 2 year old daughter when I left for Ukraine so I pumped several times a day throughout the entire 25 day trip, even in the bathroom on our British Airways flight over the Atlantic....

Henry LOVED being able to eat without choking and he sucked down both breastmilk and formula (I was not producing enough for the 25-30 ounces he needs each day) with equal gusto.

Yet he LOST weight his first weeks home.

I was crushed.

But our pediatrician described how Henry's intestines, in response to chronic under-feeding, adapted by decreasing the available absorptive surface. He prescribed a special formula with proteins in extremely small pieces in order to best utilize the decreased absorptive villi in the intestines and improve Henry's nutritional status as soon as possible...

but here we sit, after 7 full weeks of the formula being prepared to concentrate it with additional calories and feeding it to him in amounts which SHOULD CLINICALLY PROVIDE ENOUGH nutrition to have Henry gain weight.

Yet he does not.

Other children have come home from Eastern Europe in near-starvation states.

One little one almost a year ago.... www.carringtonscourage.blogspot.com

One little one about a month ago... www.theblessingofverity.com

They began to gain almost immediately..... and kept gaining.

Henry gains. Then loses. Then stays the same. Then gains a bit more. Then loses a bit more.

He weighs 13 pounds 4 ounces - 2 ounces less than when he came home.

I am tired of doctors appointments.

I was looking forward to a break over the holidays.

But now it is time to gear up and find some answers.


  1. Praying for precious Henry!

  2. Is it a by-product of the Larsen's Syndrome? I know nothing about it. . . Praying!

  3. Have you talked to your ped about re-feeding syndrome? The kids you are referencing had the help of BIG children's hospitals that knew how to take care of orphans and chronic starvation.
    You may need to take him to a children's hospital where the doctor's know how to handle his situation. Some of the bigger children's hospitals even have doctor's who specialize in international adoption issues.
    Praying for the little guy and for you and your family! GOOD JOB on the pumping! That's just amazing! (I am a certified breastfeeding educator and I am always impressed with the adoptive mamas who pump for their newest additions!)

  4. When our son Abraham came home from ET he was so sick...and I was so excited to fix him. He had h-pylori and horrible acid reflux (puked 100 times a day). "Fixing him" was a lot more difficult than I thought and it took a full year to get him healthier. I used to cry in frustration over it. Give Henry time and give yourself a break hon. You're both doing the best you can with what you've got - and go girl on the breast milk!

  5. So sorry. Praying they figure out the reason he isn't gaining so you guys can move forward and up that scale!

  6. Is there any possibility of celiac?

  7. Could be Pentimento, although he did not have any solid food from September 4 until last week when he tried McDonalds fries....

    I am seriously gluten intolerant myself...

    I just called his ped office to see if they did thyroid numbers on his blood workup so we can check that...

    thanks! Carla

  8. Could be Pentimento, although he did not have any solid food from September 4 until last week when he tried McDonalds fries....

    I am seriously gluten intolerant myself...

    I just called his ped office to see if they did thyroid numbers on his blood workup so we can check that...

    thanks! Carla

  9. Carla,
    Please reach out to those of us who also have kids with Larsen Syndrome. I think you will find that weight is a challenge for all our kids. No documentation that i've found but it is a challenge. Beth is 26 months and weighs 24 lbs very thin even though she eats better than most of my other little ones. Don't get discouraged! Hugs, Linda

  10. Thanks Linda! I was told by the geneticist at Rush that Larsen's does not affect weight gain...but I will trust the mommy specialists any day...

    the pic you sent me of Beth as a baby shows her pretty chunky though ;-)

  11. Hi Carla,
    I'm following your blog and keeping your little guy in my prayers.

    This has probably been done, but I'm just putting it out there...has he been screened for parasites? That could definitely impact weight gain.

    Sending love from Canada,

  12. Any thoughts of using a homemade formula? There is a version that has bone broth as a base - very healing for babies with problems with dairy and absorbing nutrients, as gelatin (naturally occurring in homemade stock) helps heal the gut lining. http://www.westonaprice.org/childrens-health/recipes-for-homemade-baby-formula
    I really hope you can figure out what's causing his problems with weight gain. I know how that must be so hard on your Mama's heart!

  13. Oh Carla. Praying for Sweet Henry!

  14. My son doesn't have Larsen, but we both have Ehlers Danlos and struggle with him keeping weight on. He is 27-28 lbs at 4, and that's with a lot of effort. I have few tricks, and most are only applicable when he is older. But I would definitely look into specially formulating his nutrition yourself. I'd look into any sort of metabolic considerations like the celiac someone mentioned, and others. Another side-effect of the weight issue will be his joints will be more unstable. We deal with that as well with our disorder. I'll try to think of some other things for you, and keep praying that he gets over this hump and starts hitting a weight gain stride.

  15. I can't believe it's been three months already! I am praying for you and Henry.

    Even though his little body isn't gaining much weight, think of all the "weight" you and your loving family are adding to his emotional health and soul!

  16. I have Larsen and had 3 kids with it too. I do remember my first kid struggling to reach the goal of 20 pounds and some unhappy doctor visits over her lack of weight gain. She did not have a cleft palate and I was nursing her. She is now 12 and still is on the thin side. The thing is having Larsen, with the unstable joints, makes it so they don't move as much as other kids do. I just don't think they work up the appetite from not moving as much as other kids do that are born without joint issues. When the doctors used to describe my kids weight gain (charts), I used to want to say so bad so how do they compare to other kids with Larsen. He might well be very normal in the weight gain department if they chart him compared to 100 other kids with Larsens. But no such Larsen chart exists, does it? And truthfully when they try to walk they don't need the extra weight on their joints anyway. I do believe that some of kids with Larsens muscles are affected which is another reason why they are weak, and may not have the same appetite. My other child had a submucous cleft palate. I describe him as having mild larsens. I didn't have any issues with him gaining weight and his muscles were strong from day one of his life. He was holding up his head the first couple days after he was born and he was born a week early. Now my third kid is much weaker over all, he is 4 now. I had big issues with him holding up his head/sitting up. He eats barely nothing but is okay on the charts. He doesn't use up the calories as fast when he eats, since he isn't walking yet. Waiting on the next couple of surgeries to help get him on his feet. I have more issues with getting him to eat the healthy stuff. It is frustrating, but you just got to keep doing it, keep trying different stuff till you figure out what works. I hate to say it but there will be lots of doctor appts, lots of surgeries, lots of therapist, lots of ups and down. And no the doctors don't understand you want a life too. They sometimes make you go in for an appt when you may feel that you don't really need an appt, but just a prescription or some advice on what to try. I remember when my oldest who was born without larsen had to have an appt at the local children's hospital. They asked me if he was ever there before. He was 12. I thought about it and said NO. He at the age of 12 was never seen at the local children's hospital. His 2 year old brother with larsen had been seen so, so many times already there, I had already lost count of the visits we made there. I thought my kids with Larsen got croup very easily too. That alone was a big head ache for me. It is rougher having a child with Larsen, no doubt. And I still think every kid with Larsen is different. Depends on how badly they are affected. Good luck. Dorothy Snyder

  17. Carla, we brought Ember home from UA this summer (she has arthrogryposis). She weighed close to 16 lbs at that time. Since then her weight dipped into the 15's and 2 days ago at her 2 yr. old well child she was back to just over 16 lbs. Small. She eats great though. My personal theory is that in addition to the arthro - which can be a cause of her small size - she had little "action" in the orphanage. I think since being home and being much more active with the family, playing, therapy, etc. that she is expending many more calories than she used to.
    I hope that Henry gains soon!

  18. I'm so sorry that Mr. Henry isn't gaining weight. Feeding problems are such a heart break. I'll be offering up my prayers and sufferings that this mystery is solved pronto.

    Happy Advent!

  19. Oh man. Come on Henry!! Praying for some poundage!!

  20. Dear Carla,
    I know how upsetting it is to put all these calories into your newly adopted child with so much effort, only to see them lose weight. Our son came home at 18 months and weighed about 13 lbs - way, way below any chart and graph. Could it be that Henry has acid reflux that interferes with his appetite? Does he cry a lot during or immediately after the meal?
    Wishing you strength,