Friday, October 2, 2009

31 for 21: Day Two "The Diagnosis"

I'm going to start my Down Syndrome Awareness blog by telling how we got the diagnosis and how I feel it should have been handled differently.

When any parent has a child they are so very excited about everything. We always hope for a healthy baby, for a safe delivery, and to live happily ever after. When I found out I was pregnant with twins, the excitement was doubled. I was so surprised, I NEVER thought I would have twins. That was just one of those things you see other people do or watch on a Baby Story and feel for those parents...LOL After the initial shock Tom and I were very excited.

I had a long complicated pregnancy. I had several ultrasounds done, including three Level 2 sonograms to make sure everything was ok with the babies. In one instance the perinatologist spent 10 to 15 minutes just trying to measure baby B's pinky and make sure it was straight. Boys looked good. Hearts were healthy, all organs looked great except baby B had one kidney dilated but that was nothing to worry about it should fix itself before he was even born. After finally getting the pinky measurement the words "There's no indication of Down Syndrome in either boy, they're healthy". Great!! One Less worry, now let's just get through this pregnancy.

My due date was December 15th. On October 13th a very good friend of my family died. My mom was going to keep the news from me in fear that it would upset me to badly, but I found out and I was really sad all night long. Woke up October 14th to a trickle going down my leg..uh oh. Off to hospital to see what it is. Ended up not being amniotic fluid but I was having contractions very steadily so they kept me. The next day doctors attempted to get them to stop and did not succeed, the next day they put me on magnesium sulfate....UGH, but it worked. October 17th, I was feeling well, contractions have just about stopped completely I was ready to go home. I ordered my lunch and was sitting with my sister and niece in my room and we were talking about me going home. It was a good day!

THEN, the Charge Nurse came running into my room as the lunch lady was delivering my lunch to me and told me not to take a single bite of that food!!! WHAT?? The sonogram that I had just had that morning showed that Baby B was in distress and they got poor readings for everything they were checking for so I was off to an emergency c-section.

Terrible c-secton, won't go into details, but they put me to sleep.

Fast forward 10 days. I was in the NICU with the boys sitting with my sister in law Megan. We were chatting about how tiny and cute they twins were. Caleb (Baby A) was 3lbs 3oz and Isaac (Baby B) was 2lbs 10oz, both were 15 1/2 inches long. The pediatrician came over to our pod and said he had the test results back on Caleb. Test Results? WHAT TEST RESULTS? "I'm sorry to inform you that your child has Down Syndrome." "At this time we cannot tell you how he may function in life or what other conditions he may have. We have several brochures for you to read and I'll have the nurses put something together for you. Do you have any questions for me?"

UM, no!! Can't you see the shock on my face, let me get a few breaths of air into my body so my brain can even function. Ok..Ok So Caleb has Down Syndrome. Does Isaac? "Well we don't know that yet. Because Isaac is so small the test requires so much blood we've decided to wait until the results of the placenta come back to determine if they are identical or fraternal. If they are identical they will both have it but we've never seen a case like that before so more than likely Isaac does not have it."

To back up the story and explain. When I had to have the emergency c-section it was due to Baby B, Isaac, not reading well on the sonogram. When he was born he had severe head trauma from being shoved up into my ribs. He literally had a heart shaped head coming out with the imprint of my ribs going from the top back of his head down to his chin. Due to this they did not suspect any Down Syndrome in the delivery room, just head trauma. Caleb however, they noticed some features of Down Syndrome and asked my husband if they could run some tests on him. At the time I was still heavily sedated and didn't hear any of the conversation. My darling husband, who was only trying to protect me, decided not to tell me this information because I had been through hell that week and then a terrible delivery. I do seriously thank him for that as I would have just worried for that first 10 days instead of enjoying them.

When we received the official word that Caleb had Down Syndrome we were not upset so much with the Down Syndrome, we were just nervous that we would not know how to do this and hoping that we could be the kind of parents that he would need to tend to his special needs. Neither Tom nor I had any experience or knowledge about Down Syndrome and it was scary. While we waited on the diagnosis for Isaac we kept discussing, what if's. What if they both have it? What if one does and one does not? Which way would we prefer it? How much did God think we could handle? How long did we have to wait? It was driving us crazy quite frankly.

Oct. 31st. Closed on our house...YUP!! We were buying a house and wanted to get it ready for our twins arrival in December and instead the twins came first and then the house right after they arrived. We went Trick Or Treating with older three kids and enjoyed our day bragging to everyone about our sweet little babies in the NICU.

November 1st. Twins seemed a little different today? Not eating well and having alot episodes of them not breathing? I went home knowing they were in the best care just to see the other children and have dinner with my family. I pumped and went in for my evening visit to deliver milk at 10pm and was met by a dear friend, Tina, who happened to be our NICU nurse. She said Isaac was having some trouble and they had called the life flight to ship him to Pittsburgh Children's....

November 2nd. Isaac and Caleb had both developed N.E.C. Because Isaac was the smaller of the twins he could not fight off the infection in his small bowels and had to have an operation. During this operation they drew blood to test for Down Syndrome and as they broke the news to us about his condition, they also said they were pretty sure he had Down Syndrome.

This was ALOT to take in, but we grew stronger in our faith in God, our love for our family and friends for their help and prayers, and we learned more than anything that we have no control in this life and to feel blessed for every day we're given.

Note to Doctors and Nurses:
I just wished that how we were given the news would have been done with more respect to us as parents, for the road we were about to travel, more respect for my children who may have a more difficult road but darnit they were both beautiful infant boys who needed the same attention and love as my other children did at the beginning, and more respect for the disability in general. Its not a bad thing that you have to be Sorry about. Instead Congratulate the new parents, tell them that you know several others who have done great things with their children and there are so many opportunities out there now that weren't here 20 years ago, Give HOPE instead of SORROW when you give a diagnosis. I can tell you from experience, I have been Doubly BLESSED and I would not want this any other way even if I could choose it myself now.


Christine said...

What a story! Your family is amazing!

Bill Cuba said...

I agree Stacy...the look in the doctor's eyes when they told us of Will's diagnosis, we will never forget! You could have sworn that someone had just died - not been born. I try not to hold anything against this particular doctor, but whenever I see his face I get sick to my stomach.
I will say that the doctor's in Pittsburgh at Children's were much, much more understanding of his diagnosis. They truly made us understand just how blessed we really were!

Anonymous said...

I remember this all as if it were yesterday...Its so weird that they're already going to be 4 years old! And I can honestly say with all of my heart I am very proud of you and I'm proud that you are my sister. You have taught us all so much and those beautiful boys teach us things I never thought I'd learn from them! You are a wonderful person and those boys couldn't ask for a better family!