Continuation of Sam's story

Okay, when I left off last, we had gone to the lab at 4:30 in the morning, got a good lab and headed south to be with my older children for a few days...

Well, as the doctors had told me to do, I sunbathed Sam all weekend...we returned Tuesday morning for the followup...this time, they drew the blood at the doctor's office...Sam was also weighed...he had lost more weight, now 5 pounds 8 ounces...he had dark circles under his eyes...what was I to do...

Sam's pediatrician suggested that he was not getting enough nurishment with the breast milk. I told him that I would do whatever I needed to do for my son. So, I began alternating feedings...One feeding breast, the next feeding high calorie formula, next breast, and so on throughout the day.

When I started this process, I soon found out that I was not producing much milk, I would pump for 30 minutes on each breast and only end up with about 2 ounces of milk. So ultimately, I was starving my little Sam. I continued to alternate nursing and bottle feeding and pumping, hoping the milk would flow...I did this for 6 weeks, before I gave up and switched to formula.

I felt so guilty, he was the only one of my children that I had let down...I breastfed the others for the first 18 months of their lives...more on this later...

Back to the Billi test...his results came back elevated again...14.9...the doctor started looking for other causes...He looked at the direct and indirect billi and saw something that concerned him...said he needed to be refered to Arkansas Children's Hospital for a GI scan. The pedi talked to the GI specialist and they put Sam on two meds--to help Sam's system rid itself of the billirubin.

They thought was that Sam may have Billiaryatrasia (sp). more on this later.

I was to still sunbathe Sam, continue alternating feedings, and have him weighed every 3 to 4 days...Well, I had to return to south Arkansas. The pedi said I could have Sam weighed at the Health Department. May 25, wt 5#11oz. at CCHU.

Returned to Conway on May 29. Another lab test, this time billi was good...meds working, continue with meds (they had "kick started his liver")...wt 5# 12oz.

June 1st weight check, 6#5oz...June 7th, Sam's one month old, wt. check 6#6oz...(1 1/2 ounces above his birth wt)

June 7, Sam was evaluated at Pediatric's Plus for PT and OT...did not qualify according to the scale they have to follow...however, they gave me some pointers about what I could work on...OT let me know that it was not totally my fault that I had a hard time feeding him...he had low muscle tone, which included his mouth and tongue...she taught me how to support his chin so he could get better suction. She also suggested that I change the type of nipple I was using on the bottle so that he could feed without wearing himself out. Re-evals scheduled for 3 mos.

On June 8, Sam and I met with Bettye Starkey, the DDS Coordinator for this area...She was very helpful in telling me about the services available to Sam...She gave me all kinds of paper work to fill out...some to help get Sam a caregiver that comes in and keeps him while I run errands (I haven't filled this out yet, I don't feel that we need it.), Medicaid papers, Tefra papers (Tefra is for people that make too much money to qualify for medicaid...it covers everything that medicaid does, you just have to pay a monthly premium for it like you do health insurance)...She also gave me a copy of all the laws that cover disabilities.

She is a great advocate...I have called her several times...even a couple of times in tears....

Well, my 17 year old daughter has come in here 3 times, "needing the computer" but "in no hurry" (lol) So, I'm gonna say more later....