otto craig 7 month update

i can’t believe it. my baby is 7 months old. i think i say that every month but i just can’t believe how fast and slow time goes at the same time. this past month we have made so many changes and steps and new milestones it’s unreal. i feel like things are just going at a rapid rate right now.

this month we had the g tube surgery which finally got otto a tape free face. i try not to be angry at the NG tube because that is what got Otto to where he is now. BIG. but i feel like it had so many things to do with his oral aversions and discomfort. not to mention having that pesky painful tape in the way of his sweet cheeks. the g tube surgery went awesome. we were grateful again for another amazing team of doctors. i constantly think to myself  i never imagined us having a “family of doctors” but man oh man i am so grateful for the people who care about otto. i don’t know if i told you but some members of his cardio care team came down while he was in recovery from G tube just to say hi and see how he was doing? that is how you know you are in the right place for care. when they remember his name and come and say hello. they care about otto and that puts so much of my mind at ease.

we have begun working with purees and thickened milk on a spoon. he doesn’t love it but he takes it. we have to work a lot with the back of his mouth and his palette because he has such a bad gag reflex from both the tube placement (the nose tube) and just associating anything by his face with discomfort. we are working with some amazing therapists and are making tiny baby steps forward but they are FORWARD.

i think otto’s biggest accomplishment this month though is sitting up without support. i’m starting to see signs of his independence because he gets mad if you try to help him while he’s sitting up or if you put a pillow behind him. he wants to sit up all by himself. even when he starts to topple over in slow motion he gets this little stubborn look on his face that says NO I WILL TAKE CARE OF THIS. i gently let him learn and he will slow motion fall until he is on his tummy. even then he will sit there for a bit trying to figure out how to get out of this. it’s hard not to laugh or jump and help but this is how he is going to learn how to support himself and learn to trust and use his body.

things are going really good right now. we are getting 6 week intervals in between our cardio appointments. nephrology appointments are getting farther and farther apart and we are in a stage right now where it just seems like nothing is wrong. i sometimes feel that when things are so good i’m just waiting for the bad news. waiting for things to turn the wrong corner and sometimes just get totally paralyzed by fear. i sometimes feel that my faith is tested more in the good moments than the bad. i have to stay focused and i have to stay faithful. i know that in my heart otto will be ok. he might have a different path than some kids but i know that he is so strong that we can make it through whatever is thrown at us. but for some reason the reality and the stress of his october surgery is creeping back into my life.

i have nightmares about surgery day. maybe i was just numb to it in the moment. like i just had to put my nose to the ground and get through it. but now the feelings, the suppressed memories they come back to me when i try to be quiet. it’s a constant mental game. i read in my devotional by ann voskamp and i’ve shared it before and i’ll share it again.

“fear is the FACADE of taking action when prayer is” – Ann Voskamp

and that is the phrase that i keep replaying in my mind. because..

prayer has

• got us out of the hospital and out of a second emergency surgery
• kept otto from getting sick (so far)
• healed his nephrology issues
• weight gain
• maintained heart function despite valve issues
• given us an amazing prayer team from around the world
• given us  an amazing medical team right here in grand rapids
• kept us moving forward

so as we continue to grow i pray and rejoice that otto continues to flourish. i saw a fellow “heart mom” post that she promised the doctors that if they could save her son she would give him a beautiful life. And isn’t that the truth?

so my dear otto for your 7 month of life.

i am honored to call you my son. my son, a phrase that is so special to me. i save it for the most specialist of times. when i say it i almost (ok i do) tear up because you are just that my son. you are the miracle, the gift, the joy that i never knew i needed in life. you are the source of so much joy and the teacher of so many lessons. your father and i have the highest of hopes for you and we promise to continue to raise you the best way we know how. surrounded in love, grounded in Christ and living the most beautiful life as humanly possible.

happy 7 months my sweet son.