7 months old!

Our precious baby is 7 MONTHS old.  She makes our whole world better.  We spent the day at primaries where we ran into some of our heart friends.  Stephanie is one amazing mom, you would never know that this is her first!  We had an x-ray and it looked great, yay!  Feeding clinic was pretty upset with us and is pushing for a G-tube.  Our sweet girl has been throwing up A LOT and feeding the bed more often.  Remember how she has advanced fine motor skills?  Well, she thinks opening the feeding tube is all kinds of fun and does it on a regular basis.  Feeding the bed happens too often.  We lost a half a pound in two weeks :( 

On the bright side we have learned to beckon/wave, the kids keep telling people that she's "fanning herself."  She still sleeps through the night, yay!  We had to move her mattress down since she has such super abs that she can almost sit straight up from laying without using her hands, lol.  She rolls from her back to her tummy often now and has two pearly whites.  She now gives open mouthed "kisses."  Our Adelina LOVES daddy and has separation anxiety if either one of us leaves the room.  I think she may have seen "Moana" one too many times as she likes to rest forehead to forehead with those she loves.

Miracle moments

Our baby girl pulled her feeding tube this morning so we gave bottle feeding a go all day.  The feeding clinic asked us to go three days where we let her be hungry during the day and feed her through the night through the tube.  First hurdle was cake, she didn't have a problem taking her meds by mouth.  Then came the milk, the first bottle didn't go so hot, the second she took more, by the third she was breaking previous records and just before bed she sucked down almost an ounce in 3-4 minutes.  Total we did 80 ml and need to get to 420 ml.  We have two more days and are so hopeful that she can take in all by mouth.

***update: Day two she took an ounce in 3-4 minutes and then decided not to eat the rest of the day so we went back to full feeds in the tube and will try again another time.

Oxygen woes

I have spent HOURS upon HOURS on the phone trying to get us a pediatric oxygen concentrator that runs continuously at 1/2 a liter with an extra battery pack.  Yes, it's a mouthful but it should NOT be this impossible.  We have not been able to come to a solution.  The only option that we have been given is renting one for around $400, this is problematic since we will need it over and over again.  The other option is buying...

MIlestones

Our first tooth broke through on Wednesday and yesterday Adelina decided to roll over all on her own from back to front.  She has been able to roll over before but would only do it when pushed.  She went through all the effort to get a pez dispenser :)

Prancing along

A cold swept through our family a couple of weeks ago but our poor Adelina is having the roughest time with it.  We have been warned what a big deal it is for our little fighter to get sick and they are right.  I took her in to Primaries for an appointment a couple of days ago and luckily this cold is all in her head so her oxygen levels are holding steady.

We had more good news while there.  Adelina (once she is over her cold) no longer needs oxygen at night unless she is sick.  It's a good thing too since she's been getting tangled up in it.  Right now we are on four meds multiple times a day.  Next week we get to stop one of the them and we are going to outgrow the dose of the other two and then stop them at our next appointment.  That will leave us on just half a tablet of Aspirin every day (she will always be on Aspirin).

Speech therapy has been given the go ahead to be a little more aggressive in teaching our baby girl to eat.  We are working to get her stomach to expand so that she can take a full feed in 30 minutes.  We have a long way to go but a solid plan.  We will try this method for 2-3 months.  If it does not work we will get a G-tube but we hope she will be able to take everything by mouth and not need the G-tube.