Well, I said I'd start from the beginning...so here goes!
My daughter (birdie) was born 16 days late and when she finally arrived, she was very quiet, lethargic, jaundiced, and very weak. She had no fat left on her body, and her muscle was being eaten away. She was too weak and not strong enough to eat. It was a scary way to become a mommy, (daddy too). She was in our local hospital for 5 days when our pediatrician said there was nothing more they could do for her there. She had already had a spinal tap and been in their peds ICU on oxygen and other cords everywhere, not to forget...her head started to grow in size. So, they airlifted her to the Children's hospital at UNM in Albuquerque. That was so hard on us, for them to take her and not be able to be right there with her. My father-in-law drove my husband and I down there as fast as he could. It is about an 1 hour and 45 minute drive, but it seemed like an eternity. We were scared and unfamiliar in this new setting. They led us to the NICU and got us up to speed on what they were going to do and asked us ever kind of question possible. We met so many nurses, technicians, and Doctors with enormous specialties. They ran a gazillion tests, basically guessing at what may be wrong.
She was in that unit for a few days, while hubs and I stayed at a 'cancer' house until a room opened up at the "Ronald McDonald" house. That was a scary, lonely and sad place, but we were grateful to have been able to stay as close to the hospital, as it was. (It was very inexpensive compared to a hotel.) My poor hubby had the job of calling family to give them updates on our birdie, I just cried and slept and cried some more. Oh, and pumped enough milk to have fed all of New Mexico. The nurses were very good at telling us what to do and when. They had very strict rules about visitation. With NICU, you just can't hang out in there by your baby. Terribly hard on a new momma. After a million tests and no answers, other than: "No, its not her kidneys, her bladder, her heart, her lungs"...she was moved to another unit, still like an ICU. But in this room, we could be in there a little longer, and I was finally able to hold her. Still more poking and proding, with no answers! We finally got up the nerve to ask our Doctor back home if all this was really necessary. He said give it a few more days and if nothing comes back, tell them you want to come home. Boy, we were treated like criminals, taking a seriously ill newborn out of their care! But we had to go through some class like procedures first. She would go home on oxygen, so we had to be 'trained'. She was there for 14 long, hard days. She was airlifted back to our home hospital and it was so much quieter and more peaceful, not a thousand beeping monitors. She was still in the peds ICU, but much more cozy, and the only baby. Talk about special treatment. Anyway, we finally got to bring our birdie home after 5 more days. We were anxious, happy, scared, all these different emotions. We were worried something would go wrong, because we were so used to having nurses around us all the time. Besides the oxygen, she was also on an apnea monitor. This machine was scary...it beeped at you when she would stop breathing.
Fast forward 12 years...she is still on oxygen, (at night only) and still has sleep apnea, seizure disorder, low muscle tone, but is the sweetest, kindest, most loving child we could ever have asked for. We wouldn't trade her for all we have gone through, for anything in this world. She has taught us so much! Lots of patience, love and most of all...brought us closer to the Lord.
She has had many surgeries and tough, scary times, but we cling to the fact that Jesus is there holding her, and getting us through these times. I will share more specific stories in other posts, about the long road we have traveled. Some are crazy and some are quite funny, (we had to laugh or we might still be crying...), and some are worrisome.
All along the way, we have had our families, many friends and church members lifing up a gazillion prayers on birdies' and our behalf. She goes to an amazing elementary school with amazing teachers, aides, and kids. She has received OT, PT & Speech since she was 3 months old, and continues to receive these services through her school. We are so blessed to have an awesome Doctor who has been our friend as well as our childs doctor, he has been a godsend! There are other doctors in the children's clinic in our town who are great with her as well. We have also been blessed to have a wonderful Pastor who has been along side us on this journey. Her story is fun, crazy and unique. There has not been a diagnosed syndrome, believe me, they have checked on many out there, but we just take it all in stride. We have to or we would be "livin' at the funny farm". Some times I think we have been there, ya know, after many sleepless nights, you get slap happy. But, those stories are for another day.
This should at least wet your appetite, there are 12 years worth of stories, so stay tuned...
The verse of the day is one of my favorites, I come back to it time and time again.
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7 (NIV)
Until next time,