our son, miles, will be one year old tomorrow. here is the story of our cute, wonderful little guy.
i should have known that something was up as God was setting me up with a support group ahead of time. in the months before miles birth i made a friend who's brother has down syndrome, there was another mom on the center where i worked who had a baby almost exactly a year ahead who has downs syndrome and i had a prayer partner who's sister has special needs.
my pregnancy was going normal, at least for me and my high blood pressure issues. i went to the high risk doctor (because of the aforementioned bp issues) and after looking at my sonogram for what seemed like hours he finally told me that there was a chance my baby could have down syndrome. he told me that my baby's heart valve looked alittle thicker, it wouldnt be a problem but it was a possible indicator of down syndrome. there were no other markers for down syndrome so he upped my percentage for having a baby with down syndrome from 8% to 8.5%.
i went home from the appointment overwhelmed. the high risk doctor had horrible bedside manner and made me feel like i was going to die soon from my bp issues and he had also told me my baby could have down syndrome. i told my husband and in his usual calm way he told me it would be okay, whether our baby had down syndrome or not. we prayed about it and that helped.
i kept thinking about down syndrome and even looked it up online once, i just wanted to know if it was because of something i had done or put in my body, it wasn't all those strawberry lemonades i had. i already knew about many of the complications that babies can have when they are born with down syndrome, specifically heart and intestinal problems because of the baby i knew from work who had already had multiple surgeries for those complications. when i would pray for my baby i always felt God was telling me not to pray against the possibility of down syndrome but that i could pray that he was healthy and whole.
i ended up getting gestational diabetes in my pregnancy as well so i was induced early. the labor and delivery went so much better than my first pregnancy. thank you Lord i had a non-freaking out doctor. and at 9:30 pm our son miles was born. they let me see him for a moment and then whisked him to the warmer since he had a weak cry and low muscle tone. nurses from nicu came up and were working with him and whispering. i just wanted someone to tell me what was up, i had a suspicion that i knew what it was. my doctor finally said that because of the weak cry, low muscle tone and extra thumb there was a possibility that miles had down syndrome. i dont remember really feeling much at the news, i was pretty tired, but i do remember thinking "i thought so". i think its totally true that moms can just know these things. they let me try and breastfeed miles and he had some trouble but so did our daughter and i had no milk since my babies were early.
they took him to the nursery and moved me to my room. they would bring miles to my room every 3 hours and he did latch on well, even the nurse was pleased so that made me happy.
the next day they checked miles' heart and it looked great, no problems. he also passed the hearing test. but he had trouble maintaining his temperature and eating so they took him to the nicu. that was probably the hardest part, having just given birth but not having your baby with you.
miles ended up staying in the nicu for 10 days. he dealt with jaundice and acid reflux just like normal preemie babies. i was thankful that my labor and delivery was relatively easy - no stitches or tearing, so i didnt need pain killers. it made it easier for me to visit miles often. i will never forget visiting him 3 times a day, so we could help in half his feedings. i was able to breastfeed him once a day, in front of the therapist who ensured the doctor that i was doing it right. this was a miracle as the nicu doctor told us that only 1-2% of babies with down syndrome can breastfeed.
our daughter stayed with my parents while miles was in the nicu. i'm so thankful that they could step in and help us. we were able to visit her once a day. one of the times we took her to ihop, let her get the chocolate chip pancakes and then let her buy candy at target. i felt like a grandparent, sugaring her up and then leaving.
on july 2 we were able to bring miles home. they didn't need to have us room-in because the nurses told the doctor we could care for our baby. i was so thankful to finally have him home, off the monitors and be able to bring our daughter home.
since leaving the nicu miles has continued to impress his pediatrician with his health, growth and development. he is a healthy, chubby baby (its all that good breast milk). miles sees a geneticist, where at this point it seems that she is the down syndrome specialist, telling me what i need to make sure is checked, like his eyes and ears every year. he is also in the early childhood intervention program, seeing an occupational therapist 2 times a month at a baby group.
miles has been a joyful baby and we rejoice every time he conquers a new skill. we know that God knew exactly what He was doing when he made our miles and i don't think i could love him any more than i do now.
who wouldn't love this cute face?!
1 week ago