One Year!

It's hard to believe that Hannah is 1 year old! The first half of her life was so stressful just trying to keep her alive, and the second half was busy taking care of my family and trying to find my own sanity. It turns out that even with a normal healthy baby, five kids is a lot of work and is really loud!

In the first 6 months of her life, Hannah had 3 ER visits, five hospitalizations at 3 hospitals, 4 months on a feeding tube, 2 respiratory viruses, 1 febrile seizure, a month on oxygen, 1 esophagram and 5 swallow studies, 2 esophagoscopies, 2 surgical procedures, 1 lumbar puncture, 1 MRI, 1 CT scan, a million x-rays, a dozen weight checks, and relearned how to eat by mouth (which is actually really hard).  I became an expert on inserting an NG tube all by myself, although taping it to her face just right was actually harder.  I could spell cricopharyngeal achalasia in my sleep.  Despite these circumstances, Hannah grew and learned to laugh and smile at her parents and siblings, and we could tell that she knew she was safe and loved.

In the second six months, she learned how to roll, sit, crawl, and then walk, has traveled to Illinois and Washington State and all points in between, and at last checkup was 18 and 1/2 pounds. She has 6 baby teeth, has put on some thunder thighs and has grown a head of curly dark hair. She is thriving and is a smiley happy playful little girl. She loves being tickled, taking a bath, or playing peek a boo.  She also loves pulling hair and eating our faces.

This year has certainly been a year of medical needs. Hannah has seen countless doctors and technicians and therapists. She still sees a feeding therapist every week or two and we are working on getting her to eat more table foods. While developmentally on track in every other way, she really is 4 months behind on all eating milestones.  She just doesn't want to try new things!  Except for cheerios, just about anything chunky that she can't hold onto she loses in her mouth and gags on. By 6-9 months, babies should have a certain level of interest in self-feeding and holding onto their own bottle. Hannah is just now learning to hold her own bottle.

What is the baby-tossing game called?
Because Hannah loves it.

Hannah also still has thickener in her bottle. Even though she technically passed her swallow study in August, we parents used our brains and powers of observation to identify that she drinks more of her bottle and coughs less while still at half nectar thickness.  It is a very delicate balance of thickener amount and speed of the bottle nipple. The thickener makes the liquid go down a little bit slower allowing her more time to get it down safely. 

Hannah sleeps most of the night, but I still have to feed her at 11 pm or midnight before I go to bed otherwise she will wake up at 3 a.m.  This is a side effect of not getting enough calories orally throughout the day.  As she learns to eat new things and as she learns to eat MORE of them, we can get more of her calories in her during the daytime and she will hopefully sleep all night long and not wake up at 3 a.m.  Chris and I have never had to share a room with a baby before now, and Hannah is a light sleeper, making it complicated for any of us to get a good night sleep and have Chris get out the door for work early.

On a more personal note, once Hannah's health crisis had passed and she was really out of the woods, I completely had a nervous breakdown!  I had been in caregiver mode and so completely obsessed with her needs and getting to some kind of safe finish line, that I didn't have any emotional reserves left for myself, my children, or my husband. After she came off the tube, I threw myself into sewing for my Etsy store and abandoned all other responsibilities. June, July, and August found me questioning what I want to be when I grow up and whether I should really be a stay at home mom at all rather than a career mom with her kids in daycare, or a mom who drives off into the sunset by herself and never looks back. So far I'm still here-trying to anchor myself in this role of mother to 5 and find a balance of self-identify, service to my family, and starting a small business.  But this blog isn't about me.



Hannah turned one on Thanksgiving Day, and we celebrated in Washington with Lola, Great Lola, and Uncle Robert.  She ate pizza crust and pigged out on cake, and then at Thanksiving dinner refused to eat anything at all!