Waiting on the answering machine this afternnon was the very best news! A message from, Pat, the scheduling nurse at the GI practice...She got the baby in to see the Genetics Doctor the first week of December. We love Pat. Truly LOVE this woman. This is a miracle - as there is a wait of almost a year to get in. At our appointment last Thursday, I begged her to see what she could do to get us in - I could live with the baby moving to the other side of the state to be closer to Bio Mom if she at least had a diagnosis...But for DFS to make the baby start from scratch with a whole new team of doctors is just wrong. Pat understood. Love her, love her, LOVE HER!
Several people have mentioned a specific syndrome (1 per 10,00 births...) that accounts for a whole handful of her symptoms. She shares physical characteristics with others who have the syndrome - Looking at the photos in the literature - you'd think all the children were somehow related. So why is it important to know??? Remember she is not gaining weight and growing as she should??? Seven pounds nine ounces and will be four months old in a few days. If she is a "normal baby" then she is not even on the percentile charts she is so low...NOT GOOD. If she has this syndrome, she is in the 75% percentle for height and weight!!!! VERY GOOD. If she has this syndrome, we need to take care of some diagnostic tests to rule out some potentially life threatening GI issues....tests you would NOT run on a normal baby...so getting (or not getting) the diagnosis will be very important as to how we plan for her care. For example we are putting in a NG tube to slow infuse one extra bottle overnite - hoping that gives her a boost....The next step is a G tube- but I can't think about that now....The genetics appointment is HUGE. Absolutely HUGE.
Today was bliss. The baby napped and fed, and fed, and fed..and larned how to suck her thumb and poke herself in the eye at the same time...very cute and LOUD. The baby and I did not have to run around today like crazed women -Only one appointment: and the parent aide came and got the baby for a visit with Bio Mom. I took total advantage of the hour and a half and flew to the bank and Wal*Mart and flew back home. Cat litter, toothpaste, diapers...very exotic, I know!!!!
Tonight was Community Thanksgiving Dinner at The Other Mother's work (a youth development organization. The baby and I hunkered down in an office with one of those cozy, warm, blowing heater fans for the duration while the boys were put to work: Bobbby serving cranberry sauce and rolls, AK on beverages and Cal giving folks two tickets at the door: one for dinner and one for dessert. A splendid night - they served 180 folks - down from last year's count of 250.
I am tired and need some serious sleep. Looking forward to a pretty quiet day again tomorrow: Bobby has a play date with a friend, AK is chilling, and Cal has therapy tomorrow afternoon. The Other Mother and I actually have DATE NIGHT ??!!!!???? We are going out to dinner (with our chaperone: the baby, of course.....)
PS Are those just the cutest little chromosomes you've ever seen???
A g-tube is not all that bad!! It is much eaiser on the baby than an NG-tube. Is she on a high calroie formula? I diagnosis is very important because it could change the course or "treatment" Best of luck
ReplyDeleteYay! Yay! Yay! for getting in the with the doctor. And for a date night!
ReplyDeleteThanks!!! She is on a high calorie formula with caloric additives (rice and canola oil. I know the G tube will be more camouflaged/less visible than the NG tube - but surgery just seems so invasive on her tiny body.
ReplyDeleteyipee for dr. appts and fabulous woman who get them! Hope it goes well and I really hope those SW take a step back and realise how well this little oneis doing where she is!
ReplyDeleteThat is amazing! I hope that you are able to get a dx soon. She really does sound to be doing well but I agree that in her case it is important to truly know what the scoop is, especially with a potential move. Though truthfully, I don't think my KC was a whole lot bigger than that at 4 months and they didn't put him on high cal formula either! He obviously didn't have the other issues that sweet baby Dee has but truly my ignorance was appalling. I knew he was in the 10 per cent growth range but my dr said don't worry and I just didn't! LOL
ReplyDeleteI agree it is hard to see them go through surgery, but it is so worth it in the end. Having an NG-tube inserted over and over again cannot be pleasent! My poor niece used to have a seizure every time we inserted hers. Keeping my fingers and toes corssed for the apt!
ReplyDeleteAgree with other comments, G-tube is totally the way to go! Surgery is tough, but G-tubing it is really not bad once you get the hang of everything.
ReplyDeleteEmma had a GI defect when she was born so she had hers placed at birth, but check out Staci at mi4boys on my blogroll; she recently made the NG vs G-tube decision with her little Vinny.
And HOORAY for the CdLS growth charts!! I LOVE having data to show people that Emma is nowhere near "failure to thrive" (she's around 70% for height and weight as well)