A few new things

So this week River had a series of new things: first, she had an eye appointment, then her first OT appointment, she also got a new pump this week, and we have big new plans!

She saw Dr. Deem for actually the 2nd time. He was the ophthalmologist that checks the retinas in preemies at the hospital. He saw River when she was about 2 months old. We were visiting for several reasons which I won’t get into, but not because we were concerned about her eye sight. Turns out we might have to be. First to say is that the anatomy of her eye is totally normal and healthy! Dr. Deem was super good with the little ones, and River behaved pretty well at this new experience. Her Horner’s Syndrome is still very present, although he doesn’t think it causes her sight problems. He did say that she was developing an astigmatism. That’s the bummer news. I have astigmatism and it makes me terribly nearsighted. I got my first glasses I think in the 5th grade. I believe River may be needing correction at a much younger age unfortunately. But he doesn’t think he needs to see her for another year!

Sweet girl with her new backpack pump

After that we went to her first OT appointment. It went swimmingly considering she keeps refusing to nap, but obviously still needs them. She sat in a swing for a long time! The OTA says that River will get more comfortable with her balance and her sense of movement by working on such things as playing on moving items, swings, slides etc… and getting her feet up off the ground. We hope this helps her want to learn to walk!

The other advancement this week was getting her new Infinity pump. It’s smaller, lighter, and she can wear it as a backpack! We do this about once a day, but the hope and dream is that she won’t need it for very long!

I was inspired by a story I heard recently, and it led me to read about several inpatient feeding clinics in the world, and some research that’s been done about weaning children off of their feeding tubes. I decided that it’s time to give it a try, here at home, a short weaning program over two weeks. The last two weeks in December are the most ideal since i’m off of school, and am staying at home, and my mom is coming to town! I’ve spoken to her dietician, and even Dr. P her GI doctor is onboard! We are super excited and we believe whole-heartedly that River is ready. She has a high interest in food and wanting to eat lately. She has been teething in her molars and it’s made her congested and drooly and uncomfortable, but that comes and goes. She nibbles all day long, not enough to count, but she always wants a bite of our food. I really believe if we can shut off the tube feedings and get her surrounded by food everyday that she’ll take off with her consumption!

I’m going to loosely follow the program that they do at Seattle Children’s Hospital, and the Graz clinic in Austria. I’m attaching a paper that I read that is a medical research paper regarding the success rate at this clinic in Austria and what they do. tubeweaning-paper-nov-081

I’ve found this mom’s story nothing but joyful and tear-jerking to inspire me: http://www.anunexpectedpath.com/gias-tube-weaning-story. And here’s another great blog on tube weaning: http://lifeandtimesofstella.com/tube-weaning-resources-and-tips/

I still have a  bunch of planning and reading to do, and we have an appointment with Dr. P on the day we plan to start, December 16.  We will go through just after Christmas. We are visiting the family back home and leaving on December 29th, so we will wrap up our attempt by then. We have great feelings about this! And even if she’s not completely weaned, which I think is not possible at this time, it could take her up to eating 50% or more of her daily requirements! I’m really hoping for that! Also we are looking for other babies to come join us for our daily Play Picnic in my kitchen for the weaning period! It will help River to see peer models playing and having positive experiences with food. Anyone up for getting messy??!?

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Back to the NICU

As my baby girl desperately reaches towards my keyboard, trying so hard to assault my computer and drool all over it, I never do forget how tiny and fragile she once was, and how long and it took to finally get her home with us. I have always wanted to give back to the hospital somehow, the NICU or the ICN.

As Mother’s Day approaches, I will never forget how last year at this time, we were visiting her in there everyday. How Mother’s Day was her true due date, and how she came way too early. I still struggle to forgive and forget how it was somebody else’s decision to take her out. I still hang onto some of those feelings, which I need to learn to let go. I didn’t get to choose when she came (do we ever?). But did she really have to come out so early? Did my doctor truly believe she was in danger? Did she really have to suffer such an early birth? AHHHHH I need to get over it, but it’s really hard!!! We attended a lecture recently on PTSD, it was given at our Mended Little Hearts meeting. PTSD is now recognized as a valid medical condition for parents whose child suffers a “life threatening event”. Our guest speaker said it is possible to suffer from symptoms of PTSD and not actually have PTSD. We most definitely have suffered from the symptoms, but gratefully it never was a full blown condition. My heart still quickens sometimes when I encounter triggers. Last week at the MRI I felt a touch of panic, memories. It’s my own journey to learn to overcome these things. I will be very hopeful that this year, my Mother’s Day, will be full of great memories instead of what happened last year.

But all of this has also been brought on by the fact that I made this picture up finally to give to the NICU/ICN. There were such pictures, all around both the NICU and ICN hallways that were given by parents, drawings, or photos of their children. Some letters, and short stories also. Sometimes they expressed gratitude, even though their child didn’t survive. Most of the time they expressed gratitude and photos of the child getting big and healthy and leaving the hospital! The pictures in the ICN, the stories of success, I did look at while I was there, and they did give me a sense of hope. Pete and I have always wanted to give one of these, and hope that it hangs somewhere where is might give a stressed out parent a little hope. Also to thank the many staff member, nurses and doctors, that helped to ensure River’s success.

It’s all done and ready to go! Next week I will call up our old case manager and arrange a time to bring it by and, of course, show off River! And hopefully, get a sense of closure, maybe I can learn to move on from those memories of fear and panic and trauma, and learn to feel the peace and gratitude in it’s place!

Release and a well deserved break

This morning was an exhausting trial of River’s, Ewan’s, and my patience. River had her Neonatal Development Clinic follow-up this morning, and I was expecting to be there a while, but not nearly 3 hours. They were way over booked! They monitor the progress of premmies, and address any concerns with development, and help you if needed with programs and therapy. But it was an exhausting and irritating wait today, and we ended up canceling her weekly PT today because River was so tired by the end.
BUT the good news is we don’t have to go back!! At 18 months old I can choose to come back if there are concerns. River has all her necessary therapists and medical care and they released us!!! One less thing.
Now as I was going over with them her medical care and how much I am there it dawned on me that this trip home to Utah starting tomorrow will not only get River to Utah, but give her and I a MUCH needed break from medical visits. Holy Crap I’m suddenly very excited to not see Mary Bridge for 2 whole weeks!!!