Oh My Goodness Gracious - Good Times

I can't even remember what the last few things were that I blogged on so I'm just going to roll with it right now.

Today, my little 13 lb. baby girl is SIX MONTHS OLD!!! 

Maci's SSI has been reinstated.  I won't get into all of the frustrating and upsetting details; I was just glad it was sorted out.  Maci's insurance is also worked out.  I have had to learn so much about health insurance that I never cared to know!  Maci also has Medicare.  I thought I would have Medicare before my daughter did!!    I am still sorting through some questions with Medicare but I should have answers next week.  The different parts, A, B & D....it makes my head spin.

Overall things are going well at home.  Non stop busy but going well.  I love being at home but I will say that I miss the nurses.  I don't get to talk to adults much now that we are at home so I miss the interaction with other people that I did have at the hospital.  I still wish I could move us all to our own little neighborhood.  LOL  I miss all my NICU peeps! 

Maci is getting her early intervention.  So far she has a Special Instructor and has been evaluated by an Occupational Therapist.  I need to check next week to find out when OT will actually start.  A Special Instructor basically helps with enhancing Maci's skills and development and social interaction. 

Yesterday was the last of the post hospital discharge follow up doctor visits.  All of the docs that Maci saw while in the hospital she had to see in their office.  Neurology said she looked good and come back in 3 months.  If things are good then, we go back in 6 months.  Endocrinology said labs were good, keep taking same med, see ya in 3 months.  Opthamology we go back to see in 6 months. 

Maci has a pale optic nerve.  This is a result of parts of the brain being deprived of blood flow at birth when she lost over half of her blood volume.  Her kidneys took the biggest hit but there are parts of her brain that now are filled with water instead of "brain".  Neurologically, the areas effected relate to motor skills of the lower extremeties.  She's doing fine there and the Neurologist encouraged us to continue physical/occupational therapy.  The other part of the brain effected involves vision.  The optic nerve is what sends visual information from your retina to your brain.  Maci's optic nerve being pale indicates that she will have vision issues but to what degree, we do not know.  Dr. Hoehn (the Ophthalmologist) said we would have to wait and see.  She said that Maci is slow to focus and to follow light and objects but that could be developmental, not solely a result of the optic nerve thing.  The Early Intervention program has someone who can visit once a month to work with us and Maci on enhancing development and coordination, etc and so they are supposed to be contacting him.

It's just so frustrating and heart breaking.  Is the kidney problems NOT enough.  Is the fact that she will likely have 2-3 kidney transplants in her lifetime, NOT enough.  is the fact that she could have to be on dialysis again, later in life, NOT enough that we have to wonder if she will have problems with her vision....minor or severe?  Really???  REALLY!!!??? 

Dear God,
I. Am. Not. Job.  Please don't trust me so much, K?
Thanks,
Jima  

Maci had gotten over her gassiness and tummy problems but they seem to be creeping back.  It's not as bad but it still breaks my heart for her to cry and there not be anything I can do for her.  She's been a bit more fussy the last couple of days and I am wondering if she's not trying to cut teeth as well.  The all natural Hyland teething tablets and the teething gel help temporarily (about an hour or two) and then she gets fussy again.  You pair that with gas and the need for a nap and you have one baby that can throw a good ole, down right, Southern hissy fit.

Dialysis is continuing to go positively.  The machine will still alarm on sporadic nights for low drains and we just have to play around with Maci's position to see what will allow her to drain best.  Last night....ALARMS!  Yesterday was a rough day, I was up the majority of the night with minimal sleep and my poor baby is fussy today.  She's happy and playing one minute and the next screaming with her teeth (lack of) and tummy).  She tries so hard to get calm but she is so restless.

I get more sleep now but I am still tired.  I stay tired.  My brain is tired.  But, my heart...is FULL.  At an appointment the other day, I heard the lady tell someone else about Maci and she said "the Mom is very intellegent and can tell you from memory everything you need to know about the baby".  It made me sad in a way but mostly proud.  It's a lot of information to keep up with!  Little does she know that some days I forget to take a shower! 

I keep saying that I am going to blog about a typical day.  Having a baby is busy....I know that and I understand that those who have had children understand that.  However, having one with a g-tube who is machine fed for two hours, then an hour break, then feeds for two hours again.....7 meds in the morning 4 meds at night.....gas drops every three hours but 20 minutes before feeding.....the twice (or sometimes more) a day puking, often needing a clothing change and sometimes requiring a bath....the gagging and choking but not puking but having to pat her on the back (stupid reflux)......doing the physical therapy and "homework" on the days Maci doesn't see the therapist......
It's non stop.  To go somewhere means packing up milk and her feeding pump and depending on how long we will be gone or the time of day we will be away from home, sometimes means packing up a lunchbox/cooler and the bottle warmer (because it takes two days to warm a bottle with those crazy warmers that plug into the cigarette lighter thingies).  Don't think that I haven't warmed a bottle, in public, using any outlet I could find.  There is no grabing the baby and going out the door for me.  Nope, doesn't happen. 
There is always SOMETHING to do and I can never talk on the phone.  Even trying to order Maci's supplies, call about insurance, get med refills is difficult and sometimes takes multiple attempts.  Now don't get me wrong, I am NOT complaining.  If I knew in advance that this would be my life with Maci and I could have this or not have Moo.....I would do this time and time again with even more stuff to do.  I love my little girl more than anything and would trade her for nothing.  I just feel the need to state why I can't drop and run, talk on the phone for more than 2 minutes or sometimes my texts are delayed an hour....a day, etc.  Yes, I facebook but often in the car on the way to a doctor's appointment, late at night, right before Maci wakes up, in the bathroom......and sometimes a status update gets started and then updated hours later. 
I have also been busy preparing for the National Kidney Foundation walk on June 2 and keeping up with t-shirt orders while communicating with the company making the shirts on the design, etc.  It. Never. Stops.  I just keep going. 

I'd like to say I will update again soon.....but why make a promise that I am not sure I can keep.  LOL    

     "Scratchin' and surviving.
Good Times."

The Moo Krew t-shirt. They are $12 if you'd like one and my deadline to order is this Monday, May 21. Just email me your size to MaciMoosMom@gmail.com