Last night as I laid in bed, I was trying to figure out what to blog about today. I have 31 days of blogging this month, I thought... "How about a look at Lincolns life from the very start" ... On our first anniversary, my husband and I found out we were expecting a baby. Shocked, but excited at the same time, we were ready for this next step in our lives. The pregnancy was an 'easy' one - if thats possible... On April 17, my water broke. 2 weeks early. I wasn't too sure what was going on, but I was pretty sure that it meant it was time. I phoned my mom (who was in a movie theatre - she answered tsk tsk), and she said it was more than likely my water had broke. I told my husband, and started timing the contractions. Since we were 1 hour 15 mins drive from the delivery hospital, we decided it was time to get the show on the road. 25 hours later, we had our baby boy. His vitals were good, he passed his hearing test, and he scored 9/10 on the APGAR scale. We spent one night in the hospital and were sent home to begin our life as a family of 3. Lincoln had troubles latching, and so we used a shield for a while. After 3 weeks of gaining NO weight, I decided to pump, and feed him my super milk through a bottle. He started slowly gaining weight, and we started going to the clinic once a week for a weigh in and check up. Around 3 weeks old, he started refusing to drink. He had a soother, and so I started "tricking" him into continuing sucking but actually drinking... and it worked! He gained 2 lbs in 1 week, and 2 the week after. I remember it was always such a task, and no one else could do it right. I always mentioned the fact that Lincoln didn't EVER want to eat, and was always assured i was just not waiting for the right cues. Not to dwell on this, but if something is not right, fight for it. I didn't. No one ever got it, but it worked for me, and so thats what we did.
At around 7 months, i got tired of pumping and switched to formula, and he was enjoying it AWAKE!! 'freedom' set it. But it was on to solids now. He would eat, but vomit after - every time. This was a concern (finally) for our nurse practitioner, and she set up a meeting with a paediatrician. The second we walked into the appointment with the paediatrician, she said she knew right away, but did not tell me. She assessed Lincoln, looked at his hands, looked at his neck, the bottom of his feet, asked if his mouth was always open and tongue protruding, and asked about his low set ears. She mentioned that she wanted blood work done to look for 'chromosomal abnormalities'... then informed me that could mean anything from colour blindness to down syndrome. I went home, so confused. My baby doesn't have Down syndrome. Theres NO WAY! We did the blood work, and played the waiting game. I started googling everything, confused as to why someone would mention Down Syndrome to me about my 9 month old baby!! Yes, he has a simian crease, yes his pinky finger is curved, yes his mouth is open, yes his neck is short, yes his toes have a gap perfect for flip flops, no he doesn't crawl, but he sits, his ears are low, he's in the 4th percentile, and doesn't crawl. The signs were there. But I denied it. I'll tell you, that 5 week waiting time for the blood work results was stressful. Once we received the phone call to meet the paediatrician, we knew it was probably a Down Syndrome diagnosis. We went, found out, also found out his heart had a murmur, left, cried, prayed, phoned family, got home, cried some more, hugged each other, but then became thankful. Lincoln is Lincoln. He didn't change. He still did what he always did. Nothing changed, except we got a few answers to why he did the things he did.
The next day, Lincoln wasn't breathing right, and we took him to the hospital where X-rays confirmed he had pneumonia. His oxygen levels were very low, and we took an ambulance to a bigger hospital. While we spent the next 5 nights there, an echo (ultrasound of the heart) showed that he had some holes. We were then referred to sick kids where we also found out he had 3 holes (ASD) and pulmonary hypertension, and that surgery should be preformed ASAP. 10 days after his first birthday he had heart surgery to plug the holes, and to resolve the pulmonary hypertension. This changed a lot in the way Lincoln developed. He started eating solids (in puree form) like a champ, he started moving more, and he looked healthier! Every 6 months for the next 2 years, we spent at sick kids - having his heart evaluated to ensure that all was well. And it was. 2 years after his surgery we were discharged from his cardiologist. Since 11 months of age, Lincoln began therapy at least once a week. We had speech therapy, occupational therapy, and physio therapy. He loved speech, didn't need OT much, and absolutely dreaded physio therapy. We worked hard to reach the milestones he has hit, and continue to do so. Around Lincoln's 2nd birthday he started showing signs on sleep apnea. We went back to sick kids to have his tonsils removed, and his adenoids taken out, and tubes placed in his ears. We spent 5 nights in the hospital (8 months pregnant with his brother) patiently (ha) waiting for him to eat or drink anything. It was worse than his heart surgery. Seemed to take for ever to get our boy back! But he recovered. A month later, Lincolns brother was born... my new push to get him to hit new milestones.
For 6 months I carried both kids everywhere. It was time for Lincoln to start walking!! By 2.5 Lincoln started walking - full time, and was then discharged from Physio Therapy. He also started daycare - and loved it! He started eating finger foods, and graduated from puree. Just before his 4th birthday he started showing interest in potty training, and almost conquered it - until our family re located. He lost his skill, but we continued to work for it. When he was 4.5 he had a second set of tubes put into his ears - which are still in. He continued daycare full time, continued speech and occupational therapy and started swimming on his own with water wings. He is now 5.5, and fully potty trained. He goes to school full time, in a regular class room without an EA. He can write his own name, say his own name and recognize it. He is starting to talk more and more everyday, and continues to receive speech therapy. I'm happy that after such a rough beginning, his life is more relaxed. That he isn't always sick, that therapies are available, and that his brother is his push. We are his encourager and cheerleaders. I've never seen my life as a hard road to travel on. Though it may be different than the one you're on, I am just like you. A parent learning my way through this - one step at a time.
