Friday, October 17, 2008

More of Ro

When Ro was born, she was a seemingly perfect, healthy little girl. I really had a hard time connecting with Ro. I felt guilty about "replacing" So with a newer model and I kept thinking that something bad was going to happen, every time I was left alone with the kids. I never for a second thought that I would harm my child, but I kept thinking I would do something irresponsible, so out of the ordinary for myself and that it would indirectly create a bad situation. Like, what if I left my child in an infant bath tub to answer my phone (something I would never do) and when I return, I find her submerged. I can spare the details of my macabre thoughts and say, I knew right away what this was. I had the baby blues. I call it the baby blues and not post - partum depression, because, thank the good Lord it only lasted about two weeks. But, for those who have never experienced it, those two weeks feel like an eternity and you don't know at the time when it is going to end. You have these undesirable thoughts and feelings that you are aware of, yet you have no control over it. You can tell the thoughts to "get out of your head" but you can't make it go. I remember thinking, if this doesn't go soon, I will need meds, and that was not a road I wanted to travel. I was lucky, one day I awoke and the feelings of doom and haze were gone. Just like that!

I was feeling better and attempting to bond with Ro, but Ro had other plans. She had "colic" (just a word to describe something Doctors know nothing about). Between 4 pm and 9pm she was inconsolable. She would nurse non-stop, but never seemed satiated. She would nurse through the night, forty minutes or more at a time, falling asleep, only to wake twenty minutes later, wanting to nurse again. We tried having her sleep at night in a swing, an infant seat, a raised mattress, a mattress on the floor, next to Mommy, next to Hun, in a stroller, nothing worked. Hun and I were walking Zombies, trying to carry on through the day. Ro would not take a bottle, we tried every brand, every nipple, so we could see if supplementing would work, but she wouldn't take anything foreign in her mouth, not even a pacifier. Ro is the only baby I know who was constipated while only taking breast milk. She wouldn't just spit up, it was like a scene from the Exorcist. I had to change her clothing about 12 times a day. I had to use a thermometer to help her have a bowel movement. We tried Zantac for reflux, we tried feeding her water through a syringe. I was sore, and tired, and concerned.

We introduced solids at four months, hoping it would make her feel satiated, and solve any problems. All this time we were seeing a pediatrician. He is a good Doctor, still our pediatrician, but he does not specialize beyond pediatrics, and no longer knew what to do for us, except assure us, that although a fussy baby, she was growing and following her growth curve and hitting all her milestones. Ro did become a little less fussy and slept a little better at night, but her constipation and projectile vomiting only worsened. At about six months, Ro had a swallow study done, she had no swallowing problem. She was seen by an O.T. and it was determined she had no mechanical problems when it came to eating. She had a barium test under x-ray to test for Hirschsprungs. She had no blockage in her colon. She was tested for Celiac and many other things, all negative. At nine months old, Ro suddenly fell off her growth curve. She was starting to lose weight, now it was time to take drastic measures.

We met Dr. B, a pediatric Gastroenterologist from Children's Hospital when Ro was nine months old. He suggested we take a more invasive approach and have a colonoscopy and endoscopy done. I knew what that meant for a nine month old - sedation. I realized this was the only way we would find something if it was there, so I relented. She had to be intubated for the procedure and they told me they would call me when she was in recovery so I could be there when she woke. They waited too long. When they called me to recovery, she was awake and scared to death and crying hysterically, only you could hardly hear her because she was so horse from the intubation tube. My poor Ro.

Dr. Brown called us in with the results, there were signs of allergy in her intestines based on the eosiniphils he found from a biopsy. These results were not completely conclusive. It meant, something was irritating her, but what? Dr. B. suggested at that point, to remove dairy, wheat and eggs from her diet. We did this for two months, but at 11 months of age, Ro was no longer nursing, and still would not take a bottle (She would drink some apple juice from a sippy cup, but no formula and we did not introduce milk yet). And she was still losing weight. Dr B. kept her on the diet, and proposed we force feed her via naso - gastric tube a special hypo allergenic formula mixed with a special formulated powdered fat. That just sounded so tempting to me, but what was I supposed to do, my sweet Ro was waisting away, she was a baby anorexic.

I would love to say the only reason Ro needed to be force fed was because she didn't take a bottle, but that would be a lie. And here is where I "rave" about insurance companies, because I love 'em and they make so much sense. This special formula cost upwards of 300.00 dollars for a months supply. The special hydrated fat powder cost 100.00 dollars a canister, and the only way the insurance company pays for that, is if it is going from an i.v. pump through a tube down my daughter's nose into her tiny little belly. But it doesn't end there. Because she needs an NG tube, the insurance company will now pay for my daughter to have a two night stay at Children's Hospital so I, a registered nurse, who worked in a NICU, who paid 60,000 dollars for nursing school where I already learned NG placement and practiced it daily while working in a NICU, could learn proper NG placement. (Measure nose tip to earlobe to abdomen, insert that far down nasal passage, check for placement by inserting air via syringe into tube while listening with stethoscope - I could do it in my sleep). The insurance company also now pays for a nurse to come to my home to teach me how to use an I.V. pump (duh) and they pay for I.V. pump rental, tubing, tape and bandages... Could've just paid for the formula, brilliance, sheer geniuses.

We went through the force feeding every night while Ro slept. I bought a video monitor so I could watch her, because I was sure she would become strangled by all the tubing. I watched many nights as the I.V. tube separated from the N.G. tube and formula was pumped directly onto her clothing and crib sheets, or she would pull the N.G. tube out of her nose all together, (smart girl). Most mornings she would wake and vomit everything forced into her tiny little belly. There was one day I was taking her to an appointment at Children's. While driving down Lake Shore Drive, somewhere in the midst of her incessant crying, she projectile vomited EVERYWHERE, and the crying stopped, she felt relieved. I was done with this. After two and 1/2 weeks, I pulled the tube.

I already had the the special hypoallergenic formula and canister of fat paid for by insurance, they didn't know I was no longer using the pump and tubes. So I mixed some fat and formula with apple juice and with a little (o.k. a whole lot) of prodding, I got her to take it consistently in a sippy cup. She started gaining weight and we were all happy. When Ro was 13 months, we put her back on eggs (it was Passover and there was no way I could find anything to feed her without eggs in it). A couple months later we reintroduced milk and wheat. By the time she was 2, except for the fact that she was literally anal retentive (which went along with her personality), it was as if nothing was ever wrong with her.

Even today, at age 4 1/2 she will sometimes wait too long to go to the bathroom and then suffer for it, but like I said, Ro will do things when Ro is ready to do it and there is nothing anyone can do to change that. Ro will mature her digestive system a year and 1/2 after other babies do, and you just have to accept it. For those of us with a few kids, we realize they each come with their own operation manual. No two are the same, and troubleshooting is not the same either. We just get used to each of their special "kinks". Like the key hole that is temperamental, and only you know how to manipulate the key just right so the door unlocks, so is each child, needing special understanding. Ro is a beautiful, bright nurturing child. She has grown so much. She will come up to me out of the blue sometimes, stroke my face and say "Mommy, I am so happy you are my Mommy and I don't want a different one". Oh Ro, I am so happy you are my Ro, and I don't want a different one.

0 have shown Orah a little love: