SHE IS HERE!
Sarah-Rose Elizabeth was born at 9:30 pm after a fairly traumatic c-section in which I lost a lot of blood. The pediatrician was standing by along with a whole team of helpers to assess the baby's health. She weighed in at 3 pounds 6 ounces and was 16.75 inches long, but despite being so small she seemed to be in rather good shape. Her Apgar score was 8 and so her lungs were okay, but she was so little and weak that she was soon rushed off to the Neonatal Intensive Care Unit (daddy went with her) but not before I got a peek at her and a chance to give her a little kiss on the forehead.

She was so tiny, but she was awful cute and the only apparent flaw she had was her size. She looked so precious to me and she had this cute little tongue that she would stick in and out like a little frog. I spent only a brief moment with her but I was terribly relieved to hear that they thought she would recover fine and she seemed otherwise healthy. All we'd have to do was fatten her up.

MOM'S FIRST VISIT TO THE NICU
Thus began the long wait to see my new baby. Logistically it was harder because she was in the NICU, and I would have to be feeling much better before I could be taken over there. Even when I was feeling good enough and asked the nurses to please take me to see my baby, they drug their feet. I kept sending Alan down to check on her, and kept bugging the nurses to take me down there, finally after nearly 12 hours of waiting they took me to the NICU.

Sarah-Rose was all hooked up to wires and receiving O2, they assured me it looked worse than what it really was. They let me hold her tiny little body, they even said it was okay to try to nurse her although they seemed sure she was too little and weak to be able to do it. She gave a really valiant effort even managed to latch on a couple of times but only for a few seconds. They said don't worry you can try again later, in the mean time we want you to start pumping your milk for us to feed her by bottle. Their plan was to fortify my milk with extra calories so that she would gain weight more quickly and be able to gain strength to go home and eventually to breastfeed.

ANOTHER SURPRISE TWIST ADDED
I was happy to have finally seen her and held her, and we arranged for our other kids to be brought in for a visit. We had other visitors throughout the day as well. Just before it was time for the kids to arrive, the baby's pediatrician came in to talk to us. He said he had some disturbing news for us, apparently the nurses in the NICU, who had spent much more time with our daughter than he had, noticed the baby had some features that might be indicative of Down syndrome (DS). He said he'd ordered blood to be drawn and sent to the lab for confirmation, however the results would not be in for 2 weeks.

He explained the Down's features they saw in Sarah-Rose including almond shaped eyes, smallish facial structure, and tongue protrusion (and I thought this was just a cute little thing she did with her tongue) . He said these could all be a coincidence but he suspected that when the tests came back it would show she indeed had DS. Talk about shock! Both Alan and I were dumbfounded and in disbelief. Soon after the ped left us, our family arrived and so started the long process of telling everyone.

HER MEDICAL BATTLES
Our family and friends were very supportive, keeping us in their thoughts and prayers. We all hoped against hope that they were wrong and the blood tests would say Sarah-Rose did not have Down syndrome. I spent every moment I could in the NICU, the nurses let me hold her as often as it was safe, and they let me change her diapers. Then she became jaundice and had to be under the Billie Lites, this was actually humorous, as she had to be placed in there with no clothes, with these protective goggles for her eyes, she looked very much as though she was in a tanning booth wearing sun glasses. We got great pics of this-lol!

Then they deemed it necessary for her to be put in an incubator to help maintain her body temperature. This would limit how much we could hold her, but it was necessary because she didn't have enough body fat to maintain her temp on her own. All of this was being done to help her gain her strength and gain weight so she could go home, so we never complained, it helped that the NICU staff were all so wonderful.

Sarah-Rose eventually tired from nipple feeding her bottles and so they were forced to put a feeding tube down her nose. They always offered her a bottle first and if she tuckered out before she ate the whole thing they put the remaining milk into the feeding tube and got it into to her that way. She was still gaining weight slowly but it was an upward trend and that was all they cared about. There was slow but steady improvement in her health.

As the days passed on we began to see more and more signs that she indeed had DS, so by the time the blood work came back positive for it, we were already accepting it and trying to cope with it. About day four they noticed she had a heart murmur and they ordered an echocardiogram (an u/s of the heart) and an EKG. This is how they discovered she had two holes in her heart, one called a VSD and the other called an ASD. They explained that 65% of kids with DS were born with a congenital heart defect so this was just another confirmation that she indeed had DS. At the moment the heart defect wasn't causing any problems, so we would take the watch and see approach.

Despite the heart defect she managed to graduate off of the incubator to an open crib. Then she acquired a urinary tract infection and she started going down hill quick. She was desating which meant her oxygen levels were going below desired levels and she had no strength what so ever to nipple her feedings, she even lost a few ounces. They ordered chest xrays, and an another EKG - the xray showed that she had the beginnings of congestive heart failure which meant that fluid was building up in her respiratory system causing her heart to have to work too hard.

THE TURNING POINT
A medicine called Lasix was the recommended treatment along with antibiotics for her UTI - of course she'd also have to have regular visits with the pediatric cardiologist. The Lasix was a diuretic and it would help her to release the excess fluids so that her heart wouldn't have to work so hard. Boy after 24 hours of these two meds, she became a different child. She nippled nearly 100% of her feedings, she was more alert and she started gaining weight more rapidly. A week later, and 24 days after her birth she was deemed healthy enough to come home.

HOME AT LAST
She was just starting to get reintroduced to my breast so that would take some time, but we had a great team of lactation consultants to help with that and they assured me she would eventually get the hang of it. It was a stressful time as there were a gazillion doctor appts (basically weight check ups), frequent visits with the lactation consultants, on top of that I was having to pump milk every two hours and feed her bottles every three hours. It seemed that all I ever did when I was home was pump, feed, wash bottles, and change diapers. Alan tried desperately to help out with all this and he had to be a more present force for Grace as I was now busy with Sarah-Rose. We were both exhausted, but finally when she was two months old she graduated to being 100% breast-fed. Wahoo! No more pumping. Once this happened things started to settle down, there were less dr. appts, no more visits with the lactation specialist, and no more bottles to wash.

Accepting the DS became easier as we spent more and more time with our daughter, we found she was very precious, and she had quite the personality, indeed she was very lovable. We rarely focus in on the DS features as she is just Sarah-Rose to us.

GRATITUDES AND ENCOURAGEMENT
The hospital staff, lactation consultants, and all other people we came in contact with were very supportive. They pointed us in the direction we needed to go to acquire the needed services for Sarah-Rose, including Social Security Income, an early intervention case manager and the all important therapies (occupational, physical, & speech). They even arranged for their daycare facility to care for Grace while I spent my days in the NICU, at no cost to us. They explained how early intervention would help assure our daughter a brighter future than she would have had even 15 years ago, and how it would help her to meet her fullest potential.

They told us that people with Down syndrome were now living longer, achieving more, and some even lived independently in group homes. We were assured that our baby would do all the things that other babies did, albeit at a slower pace. She would grow slower, achieve her milestones slower, and she would be slower cognitively but they never treated her as a lower class citizen because of this. "Down syndrome is just a smaller part of who she is" they said. Everyone there always treated her as a baby/person first, for this, we are ever so grateful.

Our family, friends, and even our church were supportive. We can never thank them enough for their encouragement, prayers, and gifts. They prepared food for us and even offered to clean our house. There were many phone calls to check on how the baby was doing and many people had to be put on the NICU's visitor list; okaying clearance for them to come visit Sarah-Rose when we weren't there.

I know that her story is long but you wouldn't have a real feel for what we experienced had I left any of it out. We certainly don't regret having Sarah-Rose or having had the TR. And we hope that it doesn't scare anyone away from having a TR. Our journey has been and continues to be a learning experience, one in which we continue to feel blessed to be a part of. We have not lost faith, and we trust that God orchestrated this so that we could grow and become witnesses to His awesome power. We hope that His glory would be seen through how we live each and every day. That is the story about our SPECIAL little Sarah-Rose. I realize that some may think this story had a sad ending, but I assure you we are quite happy. We ask that you not feel sad for us or offer apologies to us, as we don't think of all this as a bad thing, but instead to us it is more of a special blessing.

For those wanting to learn more about Down syndrome, click on my LINKS. On my links page there is also a link to a wonderfully written story, by Emily Perl Kingsley called Welcome to Holland, that gives a great analogy of what it's like having a child that is different. I encourage anyone to read it. Thank you for taking the time to visit my web site.

CURRENT UPDATE
Okay if you are still with me so far, then you are probably wondering how Sarah-Rose is doing now. Miraculously she has been very healthy. Her heart is nearly healed up on it's own, there is only one small hole left, which her cardiologist feels in time will also close. He assures us that she will not need surgery on her heart, and that she no longer needs to have follow ups with him.

Despite being healthy she has had more dr. appts in her short life than I've probably had in my whole 37 years of life. This is just the reality of having a child with a disability. We just take it one day at a time and enjoy every minute we can. Children with Down syndrome are often afflicted with major health problems, and so you see we can only praise our God in heaven that our precious angel is very healthy.

She has several therapy sessions each week to help her reach her milestones. Despite having physical and gross motor delays due to being hypotonic (meaning she has lower muscle tone), this girl is still a mover and a shaker. She is currently walking independently, and climbing furniture to get into things all over this house. She is a great eater and self feeds using normal utensils from plates and bowls. We are trying to build her core strength and teach her how to climb steps in the upright position and to step over large obstacles. She is communicating her needs via a combination of signs and spoken words, but more exciting we knows she is understanding things we say to her.

She is still pretty small, measuring in the 5th percentile on the Down syndrome growth chart (yes they grow smaller so they have a special growth chart comparing them only to their DS peers). Believe it or not this girl recently turned two years old, although by her size you might think she is only 18 months old.

She is a joyous child to have in our lives. She is deeply loved by our entire family. She has the most precious smile and a happy disposition most of the time. I know that children with Down syndrome are thought to be happy all the time, but I guarantee you that is a myth, I know this from talking to other parent's of children with DS and from personal experience. However, in Sarah-Rose's case there is no better way to describe her than happy. She is alert and active, she laughs and cries and does things just like any other child, just at a slower pace.

I'm now starting an online support group to be a support system to other people living closely to people with Down Syndrome. If you are a person seeking support please join this new group by clicking on the link below.

Back to page one of Sarah-Rose's Story

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