Isaiah's Story

You see that 2nd line pop up on the pregnancy test. First there's the check, double check, and check again to make sure your eyes aren't playing tricks on you. Then you get excited and start to dream about the journey ahead. For some, you know immediately in your mind whether you want a boy or girl but deep down you think, "in the end it doesn't matter. As long as the baby is happy and healthy I'm excited!"
But what if that baby is born and he or she isn't healthy? Does that mean that you're no longer excited? I was once a person who used the phrase "... as long as the baby is happy and healthy..." but after having one that wasn't healthy, that phrase seems so conditional and subjective to me. As if you'll somehow love or want that baby less. And that is so far from the truth.

Isaiah was born on February 4, 2013 and when I first saw him something looked a little different in his facial features but I had also been pretty heavily drugged after the c-section with pain medicine plus benadryl for the itching. If you've ever had a c-section, you know that horrendous side effect that makes you want to claw your face off.

I was told that he was fine and I would see him again once I was in my room and he had all his newborn procedures. But instead of someone walking in my room with my baby boy, the nurse practitioner from the NICU came to tell me that my baby had some breathing difficulties and was taken to the NICU. Later the neonatologist came in and told me that my baby had a bacterial infection and was on oxygen as well as IV fluids. Oh, and we think he has Down Syndrome but we won't know until the test results come back from Mayo Clinic in a few days. Get some rest and you can see him in the morning.
As soon as my catheter came out and it was 9:00 am (no visitors...not even parents were allowed from 6-9 am and pm so the babies could rest, shift change could be done, and scary procedures could be done) I walked down to the NICU to be with him. Yes people. 13 hrs after a c-section I walked down to the NICU to see my baby.

Before I went my nurse tried to prepare me. She told me there would be tubes, wires, machines, beeps, and other babies with so much attached to them you can't see them. She said my baby was only on a nasal canula and IV but to not get scared when seeing the other babies. As much as she warned me, nothing prepares you for the first walk down the NICU hallway. It might not be YOUR baby on a ventilator but it IS a baby. And your "Mother's heart" bleeds for them. And in your state of unbalanced hormones, you being to cry before you even see your baby. And then I got to the pod where my baby was. And even with his nasal canula, IV, and leads on his chest... he was absolutely beautiful. I held him and rocked him for about 2½ hours before I started getting very tired again from the pain meds and my emotional night. The next time I saw him they had to add bilirubin lights to his course of treatment. Because he wasn't allowed to eat he couldn't poop out all the extra bilirubin and he had become jaundiced. 2 days later the pediatric cardiologist made his rounds. Nobody told me my baby had a heart problem. They had failed to tell me about his murmur and that they suspected a hole. So it came as a shock to me when I was told about these things.

Over the next couple of weeks he was able to start eating and did great. Eventually he was able to go to the step-down unit where he had his own private area behind a curtain and could wear clothes since he didn't need the bilirubin lights. All of the nurses were fantastic and by the end of the 2 weeks I was ready to take my baby home and face this new journey. I knew having a baby with special needs would be different from my other 2 babies but I wasn't prepared for HOW different it was going to be. In his first 4 months of life he has had 3 hospital admissions, strep throat, an ear infection, and now we're dealing with constipation & poor weight gain.

But even though there are challenges that I never imagined I would face, I also can't imagine life without him now. What I tell people is that I don't feel like it's a burden to have a child with special needs. Instead, I feel so honored and humbled that God trusts me with one of his babies that needs extra care and love. Those of you who are familiar with Down Syndrome know how loving and precious these children are. Isaiah loves to be hugged and cuddled. He gets really happy when he knows he has your undivided attention and might even give you a smile if you talk to him. He is a little behind on milestones but not by much. And each time he meets one, it is a very exciting accomplishment because he has to work a little harder to meet those milestones.

Suppose you were to ask me to look back and tell you if, before all this happened, this is something I wanted or imagined for my life. I would be completely honest and say, "No. It isn't what I wanted or imagined for my life". But in that honesty smile and then say, "Now that it has happened I wouldn't trade it for the world! This is my life now and I choose to embrace it and enjoy it. Through all its ups and downs."