National Prematurity Day!! And SLC update.

Today is National Prematurity Day.  So if you read this today, quick, go find something purple to wear to show your support for these tiny miracles.  Today, we celebrate Bella and other micro preemies and preemies around the world.  We remember the baby angels who for reasons known only to God were taken too soon.  We pray hard for those who are experiencing premature labor and the scary emotions that go along with it.  We pray for those in the NICU fighting to overcome the fact that they came too soon.  We pray for those of us who have "gotten well enough" to go home from the NICU but are still riding that preemie roller coaster.  Today is a day to find joy in the small things. 

I needed today.   I have been feeling a bit down lately.  Struggling with feelings of guilt.  Feeling anguish over the fact that Bella has to struggle so hard for so many things.  Then through a good friend I was reminded to celebrate the moment.  There are blessings all around, but it is up to me to see them and act on them.

Will you join with me today in celebrating life.  Go "get your purple on"!  :)

Salt Lake City update:

We saw a new eye doctor that I really liked.  He said he was optimistic about Bella's vision.  She does need glasses (which we have ordered), pictures to follow.  He also said she does have cortical vision impairment (which we hope will get better with time).  He also said she will eventually need patching and surgery to fix her eyes.  So, we pray for the best.  We pray that her brain will learn new vision pathways.  That with the glasses her vision will improve and in return maybe her motor skills will improve.

Her neuro appointment left me feeling both discouraged and hopeful at the same time.  Her ventricles were again, maybe, slightly larger.  But clinically she is doing so well that the surgeon said it would be a shame to do surgery at this point.  He has consulted with other doctors in his practice as well as with the Neurosurgeon who first started doing the choroid plexus coagulation.  This doctor started doing the procedure in Africa in hopes of helping kids with hydrocephalus have better outcomes.  In Africa shunts aren't really an option because these kids don't come in for follow up visits, so the shunts fail or get infected and the children would die.  So, he wanted to come up with another option that would hopefully help fix the hydro without a shunt.  Enter the procedure that Bella had done.

All of the neurosurgeons were in agreement, treat the patient not the scans for right now.  Both have said that Bella is a bit unusual (no, not our Bella.....lol).  Most patients either do great and have an obvious success or have an obvious failure within a reasonable short amount of time.....Bella, however, is riding that gray area in between.  In true Bella fashion, she is doing things in and on her own time frame.  I have talked to her and told her what it is doing to my nerves, she just smiled big at me.

We go back again in 2 months for a follow up visit with the eye doctor and neurosurgery.  She will have an MRI at that time in hopes that it will give the doctors a clearer picture of what is going on.

We thank you all for the many prayers and positive thoughts.  We are also so thankful for those who helped us on our trip to Salt Lake.  Your "gift" was timely and so needed.  I will just say this, Matt has amazing co-workers.  We love you guys!! 

Happy 11th Month Day

Very fitting, so much to be thankful for today as it is Veteran's Day and Bella's 11 month-day. Yep, in another month our little Bella will be one year old. Can you even fathom how fast time has gone in the last year? Amazing.
So much to report. Bella has had an up and down time since our last post. Becky has been consistent about getting therapy accomplished here in the home as our sweet, sweet therapist has been out sick over the last couple weeks. Bella lasts through the majority of the exercises and stretches, but still has trouble with keeping her head upright and trunk control. She kinda folds up like a taco, especially when her legs straighten out-almost as if it's a involuntary response.
She Cu's, laughs, cries pretty good, she can roll side to side and even side to abdomen occasionally. Shes still having trouble with focusing appropriately with her eyes, but I do know she is fixing on objects a bit better. We trialed her off the night time O2 and she did well, but the O2 sat probe thingy will not stay on her foot, when we asked for a larger or band-aid type one from our home O2 company, they sent us one that doesn't fit...buncha goobers.
Anyways, we now leave the cannula off because it was causing her some stuffy noses (even with the bubbler) and so now we have a blow-by set up of a simple pedi-mask that we set close to her. The first night we used that we also had the O2 sat probe connected and she did awesome! Now we just utilize the blow by at nighttime.
Got our 1st snow in GJ yesterday, it was pretty cold all night and throughout today. BRRRR! Currently it's 25 degrees outside. We are trying to get the ducts and registers blown/cleaned out before we fire up the furnace, but we are having some scheduling conflicts.
Just so you know, we are headed to SLC this week for a follow up at Primary Childrens in the neuro department. Scheduled head US, then potentially an MR scan, then depending on those results, a potential procedure and/or surgery for a shunt placement. We pray for the right ventricle in her head to be normalizing and for her to not need any further surgeries, poor baby.
She has been a little more fussy, puking a bit more often-we think closely related to the reflux and she is just not gaining weight. She is loving some baby food at least once a day, trying twice a day, but is still having concerns with constipation. Roughly every 10 days she needs a pedi-enema. They are not fun for her as she cries throughout the procedure and the after effects.
So....we move forward in faith-hoping for the best-praying for the best and God's will to be done. Thank you all once again for prayers and best wishes and your service to us in any capacity. We love you!

-Matt-