Improving

He had a rough day yesterday. I called the Cranio Facial nurse and she said it seemed as though he was getting full feeling back in his lip and that wasn't very nice. He refused to eat...I had to force feed him...meaning he never sucked he just swallowed. He just wouldn't form his lip around the bottle at all. He needed his pain meds every 4hrs on the hour...not a second later. The nurse said it was very normal and that today would probably improve a bit. Well he has slept his regular schedule last night. He went down at 8:30...we woke him at 10:30 just to give him pain meds...and its now 7:30am and he's still sleeping. His normal routine is 12hrs. So it seems as though he's feeling a bit better...I'll see in a bit when I feed him.

I was exhausted last night and went to bed at 10 or so. Yeah thats early for me. I think it was those first days in the hospital catching up with me...getting up at 5am surgery day...then the next night being woken every 2 hours to pump and feed Azlan all night long (the 12 hr nights spoil me )...then up for the day at 5:30 again...when you have doctors coming in all night its hard to just snooze away.

We were also part of a research I signed up for. It involved a little more than I first thought but as the research doc said "for all the future little Azlans...a big thank you" so I'm glad we did it. They said it wouldn't wake him all their testing in the night but it did. So thats why I had to feed him every 2 hrs...they woke him every 2 hours.

I'm feeling a lot better...I just always have this lump in my throat or knot in my stomach like I've lost something. Like I'm mourning. And when talking to the doc he said in a way I am. Yes I think Azlan looks beautiful ... Yes I know this is best....he just still doesn't look like little Azlan. Everyone keeps saying how its incredible that he changed from being Tirzahs' twin to now looking just like Zion. Funny. We are now realizing that his seriously square face was in part to an open mouth so everything just stayed square...b/c the surgery just transformed that square look.

My neighbor and friend came over last night to pick up her little boy that I was babysitting and she saw him for the first time post surgery....and she too thought he looked just like Zion. She kept saying how as soon as the stitches and nose stints are out...you will never ever know he ever had a cleft. Isn't that incredible?

When I was pregnant I was in Walmart once and saw this young hispanic couple with a gorgeous little girl (6mths old). I stopped b/c of her full head of hair but as I got closer I saw the finest thinest red line on her lip. I asked if she had a cleft. they nervously said yes then I told my story. They said her cleft was extremely wide which inside I boohoo'd b/c there was no way. This child had NO thin lip she had the biggest poutiest upper lip just all with a thin red line. that was it. nose was perfect. They said "no we even had to tape her everyday b/c they only do that with wide clefts...just make sure you tape your little boy everyday...it'll help so much".

Now. Fastforward to us. I can TOTALLY see the same situation happening...we're in the store...a couple either pg and aware of a cleft or have a little cleft baby...and see us. I try to tell them how severe Azlan's cleft was. They will totally be like "yeah whatever". Funny but it'll be true. I should carry around a pic of him before surgery. Actually not a bad idea.


I also learned at Children's HOsp that I'm far in the minority. The orthadontist was telling me that he often warns couples to be aware that after surgery you might miss your baby's cleft...I was saying OH I"M TOTALLY AWARE THAT I WILL...and he said about 95% of the couples that have it done say "oh no, not me...just get him looking normal". wow. How can you not fall in love with that little cleft face. Wide Smiles they call them. It taught me a lot about true love. The more people looked, stared, asked questions, screwed up their faces as we walked by...the more I loved his look. To consider something perfect that doesn't meet the 'standards of perfection' is just the best feeling. Perfect. Just as God made him. I know we are all formed by God...but when you have a baby that doesn't look average...then you really realize it. I just really believe that the hand of God touched him and made him just the way he was. And I couldnt' have loved him more. I also know how 'there' God was on Feb 6 in that little OR room where I left my little boy. He was so not alone. Sure the doc carried him away but someone else was holding him. "I will NEVER leave you..."

Everyday I get up I look at him and see a different child than I had last week. Soon this will become Azlan. This is him for the future...this is him for life. But I don't ever want to forget. I hope everytime I see a baby with a cleft my heart melts. and I remember. I have the smile train organization picture in my den...its an older child with teeth with a cleft lip. Everyone winces when they see it...I melt. See...God does have a purpose in everything. Maybe he just wanted us to always have that soft spot for another in a similar situation. Maybe I would have once winced...I don't know. I always HOPE not but I truly don't know. Maybe I would have been one that stared as I walked by in the airport...and jabbed my husbands arm and whispered as we walked by. I hope not but I don't know. Now I can't wait to see someone walk by so I can stop and say how beautiful their baby is and show Azlan how he started out.

ahhh...I am mourning in my own little way. I do know this is better for all purposes but it doesn't change the fact that I lost something. Forever changed.

When I see his eyes...I try to enter in. This IS Azlan. He is still there. HE hasn't changed. and I am and will always be...since the moment I found out I was pregnant...to the 19 wk ultrasound when we found out we were having a baby boy with a cleft lip and palate...to that first moment I met him on Sept 13...to the months that followed...to the day when he was changed for life on Feb. 6....IN LOVE with this little boy.