Wednesday, September 4, 2013

8 Weeks Together

We have had a very full eight weeks.  Fair warning: This post is going to be long.  We have been in all directions.   I don't pretend to think that everyone is going to find this completely interesting and will read the whole post, but families out there looking for other families on this journey might gain some detail that will help. Likewise, if you are a family reading this and says "hey, we were there and this is what worked...."  I would love to hear about it in the comment section!

Nutritionally

Our main medical struggle has centered around nutrition.  M has had a ng tube now for 7 weeks.  We quickly decided that the commerical ng tube formulas are "no good."

Here is the ingredient list of very popular brand of ng tube formula:
Water, Corn Maltodextrin, Milk Protein Concentrate, Sugar, High Oleic Safflower Oil, Soy Oil, Medium-Chain Triglycerides. Less than 0.5% of the Following: Potassium Citrate, Natural & Artificial Flavor, Magnesium Phosphate, Cellulose Gel, Salt, Potassium Chloride, Calcium Phosphate, Potassium Phosphate, Choline Chloride, Soy Lecithin, Monoglycerides, Carrageenan, Ascorbic Acid, Cellulose Gum, m-Inositol, Taurine, Potassium Hydroxide, Ferrous Sulfate, dl-Alpha-Tocopheryl Acetate, L-Carnitine, Zinc Sulfate, Calcium Pantothenate, Niacinamide, Manganese Sulfate, Thiamine Chloride Hydrochloride, Pyridoxine Hydrochloride, Riboflavin, Cupric Sulfate, Vitamin A Palmitate, Folic Acid, Chromium Chloride, Biotin, Potassium Iodide, Sodium Selenate, Sodium Molybdate, Phylloquinone, Vitamin D3, and Cyanocobalamin.  


Does anyone else eat this day in and day out?

Here is the more "real" food based alternative:
(Unflavored) Water, Corn Syrup, Green Pea and Green Bean Puree (Water, Dehydrated Peas and Green Beans), Chicken Puree (Water, Dried Chicken), Peach Puree (Water, Peach Puree Concentrate), Sodium Caseinate (from Milk), Cranberry Juice (Water, Cranberry Juice Concentrate) and less than 2% of Canola Oil, Medium Chain Triglycerides (from Coconut and/or Palm Kernel Oil), Partially Hydrolyzed Guar Gum♦, Calcium Phosphate, Potassium Citrate, Hydroxylated Soy Lecithin, Choline Chloride, Maltodextrin, Salt, Sodium Citrate, Sodium Ascorbate(Vitamin C), Magnesium Oxide, Carrageenan, Potassium Hydroxide, Taurine, Alpha-Tocopheryl Acetate (Vitamin E), M-Inositol, Ferrous Sulfate (Iron), Zinc Sulfate, L-Carnitine, Natural Flavor, Calcium Pantothenate, Niacinamide, Vitamin A Palmitate, Vitamin K1 (Phytonadione), Vitamin D3 (Cholecalciferol), Manganese Sulfate, Thiamine Mononitrate (Vitamin B1), Pyridoxine Hydrochloride(Vitamin B6), Riboflavin, Citric Acid, Copper Sulfate, Beta Carotene, Folic Acid, Biotin, Potassium Iodide, Chromium Chloride, Sodium Molybdate, Sodium Selenate, Vitamin B12 (Cyanocobalamin). 
So maybe a little better, but the second ingredient is still corn syrup.  After our insurance declined to pay for any formula, even though it is designed and prescribed for a ng tube, that made the decision easy for us.  We started making our own formula, with the help of a nutritionist, that would give her real foods, balanced, and thin enough for a ng tube. 

Our recipe:
2 cups soy milk
1/4 cup cooked brown rice
1/4 cup cooked oatmeal
1/2 banana
1/2 cup peaches
1/2 cup cooked greens
1/2 cup steamed carrots
1 oz of cooked beef, pork, or chicken (we have been alternating with beef liver for iron)
2 teaspoons olive oil
1/4 teaspoon salt
10oz of water

M also gets a liquid multivitamin, Floradix with iron, and fish oil.  The above recipe provides 600 calories and is enough for one day.  We had to buy a Blendtec (like a Vitamix) blender for this recipe to go through her tube.   (Side note: We actually love the Blendtec and use it throughout the day to make ourselves smoothies full of veggies and fruits.  We wouldn't have spent the money on this if it wasn't for M's food, but has turned into the most used small appliance.)  The recipe takes time to make, the ng tube is very narrow and, therefore, very difficult to get food through, and is a nuisance to have hanging from her face all the time.  But the better nutrition is paying off.  M's skin is supple, her color is improving, and she is rounding out in a healthy way.  Interestingly, although she is small, she is proportional, so the nutritionist doesn't want her to so much put on weight as to just GROW.

We have been in feeding therapy for about 5 weeks now.  Initially, M had taken some small amounts of food and water by syringe in Bulgaria.  Then she completely stopped eating and drinking.   The feeding therapist got her taking bites again, but then we started working on her stimming behavior: she sucks on her tongue with her hand against her mouth after every bite.  This action causes the food to dribble back out of her mouth, but it does help her to swallow what is at the back of her mouth.  The therapist had us working on keeping her hand away from her mouth and then cueing her with the word 'swallow' to get her to swallow.  This started working.  The foods were still completely pureed foods with no texture.  So we started adding some texture.  And then a sippy cup of liquid.  M started actually making progress; we were very thrilled. The therapist was pleased that she was actually making some chewing motions.  Unfortunately, M added teeth grinding after every bite, and the therapist would rather she sucked on her tongue than have her damaging her teeth.  So we started working on a gentle 'no' to the teeth grinding as well as rubbing her cheek for tactile stimulation.  But yesterday she shut down again.  Refusing all foods and drinks by mouth.  We'll see if she works back to where she was.
video

 'M' taking bites from her big sister, before we started messing too much with the form of her eating, and this is what she would revert to, if given the chance.


video

Picking up cheerios, dropping them, giggling, but not daring to put them in her mouth ;)

GI issues

M's referral listed GI issues.  The diagnosis changed with every update we got from Bulgaria.  From 'neuro-intestinal dysplasia' to 'celiac' to 'gastritis.'  But whatever it was, her stomach was terribly distended and she cried and fussed frequently with sharp pain. Now at home, we saw the GI doc.  The doctor quickly came up with 'she is full of gas.'  She suggested a few diet changes and gas drops.  I wasn't completely satisfied with this response as the diet was so radically different from the orphanage diet, it couldn't be food choices since her tummy was distended there and at home.  The doctor was confident that it wasn't an  anatomical problem.  We got an xray to confirm that it wasn't remnants of the constipation and went about our business.

Two days later we were scheduled to get a sedated MRI.  The anesthesiologist listened to M's lungs before starting.  Her right lung sounded wet.  So we got a quick xray to rule out pneumonia.  Turns out her right lung was being compressed by her diaphragm which was being lifted by her abdomen being full of air. The doctor was hearing bowel sounds where her lung should be!  This wasn't on the xray two days previous. The MRI was canceled for that day.  The GI doc called me at home to say that M is swallowing air as a habit to wanting to feel full when she was not getting enough food at the orphanage.  You would think that we would recognize this behavior, but, seriously, we didn't.  It doesn't looking like gulping and swallowing.  I remembered reading months ago about another little one from Pleven that coped in this manner, HasyaNow we are satisfied with this diagnosis.  It makes sense.  We can see that there isn't anything medically wrong with her gut.  She has just been starving for 6 years. We are venting her regularly through her NG tube by pulling air out of stomach using a large (2oz) syringe, sometimes up to 5 syringes full at time.  She deflates right before our eyes!

Remedy for Nutrition and GI issues

M will be getting a G tube surgically placed on September 12th.  This will make feedings sooooo much easier, will give us more time to let her set the pace with solid foods by mouth, and will allow us to vent her stomach and remove the swallowed air as she gets distended.  Hopefully, as she gets used to being a "healthy full" and trusts that she will eat again, she will let go of the air swallowing.

Ophthalmologist

M got glasses!



Neurologist

 M has been diagnosed with epilepsy.  She has had five seizures in our presence.  They appear to be tonic-clonic seizures.  We are scheduled to get an MRI done along with her G tube placement on September 12th.  The neurologist is tweaking her medicines to try to stop the seizures altogether.  We have been given emergency escape meds should her seizures last longer than three minutes.  Her caregivers in Bulgaria said that she had only ever had one seizure and then they got her the medicine and there was no more.  This is highly improbable.  The neurologist believes that the medication levels that she was being given were not high enough for a child of her size.  More likely, the caregivers weren't paying attention as she lay in her crib seizing.  She is almost silent while they are happening, and then whimpers for about 1/2 hour afterwards.   Afterwards, she is very drowsy and is exhausted for most of the day.  It will be interesting to see what the MRI reveals and would like prayers that her brain hasn't been terribly damaged by the neglect and malnutrition. 

M had also been diagnosed with cerebral palsy in Bulgaria.  The neurologist at Seattle said "She doesn't have cerebral palsy. She is just developmentally delayed due to neglect."  I don't have anything else to say about that.

'M' can pull to her knees!

Biogeneticist

The last test run in Bulgaria was a metabolic test.  The test came back abnormal and indicated an underlying disorder. All the specialists here have been telling us "Let's see what the geneticist thinks.  She will probably have an underlying syndrome or mitochondrial abnormality.  Because she looks so unusual."  I think they wanted a smoking gun to explain her delays and her size.   We, rather I, was nervous about this appointment.   Guess what?  The geneticist examined her and doesn't see any of the typical  features of any particular syndrome.   The bloodwork that would point to a metabolic problem are all normal except for the ones that point to being extremely malnourished for a long time.  He expects those will normalize and we will recheck them.  We will probably be getting another blood test that examines her DNA at a high level in an attempt to assign an all inclusive diagnosis for M.

The Next Steps

On the horizon we have audiologist, endocrine, rehab, OT, and PT appointments, and a sedated dental cleaning.  We are excited about the rehab, OT, and PT appointments.  These will be such an empowering portion of the healing process.  Currently we feel a little conflicted on the best ways to help M through her sensory dysfunctions, her lack of mobility, and her ability to communication with us.  The G tube placement requiring two days in the hospital and her MRI are on the 12th.   We will be continuing the feeding therapy.
  

Summary/Random Babbling

So I think that covers it.  We have had a lot of appointments.  Nothing earth-shattering from any of them.  Just a little girl that hasn't been fed, touched, talked to, loved, or free for the past 6 years.  It is hard to believe that everything, except maybe for the epilepsy, is coming down to nutrition and neglect.  On the one hand, it is good.  She doesn't have anything medically holding her back.  On the other hand, it didn't have to be this way.  This had a cure years ago.  Someone just needed to be a parent or a caregiver and give care, real care.   The absolutely hardest thing for us, as her family, is that M isn't happy here a lot of the time.  Everything is overwhelming for her.  It is our pray daily, that she will get better at understanding that this place is better than that other place, and we are not here to harm with the medical appointments, the therapies, or our touch. 

I ran into a friend at the grocery store and she sent me this passage afterwards in an email.  I greatly appreciate the reminder.

Proverbs 3:5-7

Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.

 

We have been blessed with family and friends that check in frequently, and ask for ways that they can help.  Forgive us when we don't know what to say.  We don't really know what we can turn over to someone else right now. We are still trying to commit to the six month adoption cocoon for bonding (we are too tired to go out and about anyway. ;) )  We are just holding each other a little tighter, here in the trenches.  We recognize each other's exhaustion and smile with a knowing look.  A gaze that says 'together, we are here together.'








2 comments:

  1. Wow. My heart breaks for M. Praise God that she has the love and care she needs now. I will be praying for you and for M. I believe that there is a diamond in the rough in this little girl and your love and care will bring it out. Sorry the process is so long and exhausting I can only imagine how hard it is. God is good and he holds your whole family. Praying. Let me know if I can help.
    -Bobbi

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  2. Maria, you're right in the middle of a very challenging assignment and you're doing an extraordinary job. It will be a long process--Katie is STILL bonding to us and we expect it to continue. We hadn't seen a whole lot by two months home, either! In retrospect, we can see that the smiles we got back in the beginning were mostly from her enjoyment of the new sensory stimulation she was experiencing. I'm praying for you as you persevere toward M's healing without seeing a lot of progress. Hang in there, mama! I am praying for God to uphold you and heal your precious M and I know He will.

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