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.

Great News

We are cleared to travel home!  We just have to go to one more visit in May to be sure but we are okay to travel home after almost a year.  Brent will fly out in May and we will fly back with him when the kids are out of school.  We are so excited!

Adelina had an appointment with speech and nutrition on Thursday and after that we saw her cardiologist.  Speech is on board with teaching her hunger before we go straight to the Gtube and has started us on the road to bolus feeds.  In other words we are slowly increasing how much she gets in three hour blocks until she is being fed for one hour, off for two, on for one, etc.  During the night she will still be continuously fed.  So far we have given her bananas, applesauce, a smoothie (which she liked).  She likes to suck on apples.

Dr. Pinto came in and turned off her oxygen!!!  She did just fine and now I have the song from Pinocchio stuck in my head, "I've got no strings to hold me down..."  We can go outside without several minutes of planning.   I can follow the kids out to the garage.  We are no longer a tripping hazard.  So many wonderful freedoms.  We are still on at night but have really enjoyed the freedom of our last couple of days.  

Tough choices

Huge improvement today and another testament to the power of prayer.  Adelina took, from a bottle, 10 cc's of milk.  That is about 2 teaspoons.  Prior to this amazingness we have only managed 2 cc's.  We need to decide if we can get her off the tube quickly or if it would be in her best interest to get a G-tube which is placed directly into her stomach with a "button" above her belly button for feeds.  She has three speech therapists that work on feeds and they are all very different.  One thinks that she will learn to eat around age 4-5, she is in no hurry to get her eating by mouth, pretty discouraging.  One feels that we need to get her hungry and she'll eat (this is what happened today).  The third had a tube fed child until the age of eight and recommends not waiting for a G-tube.

Therapy

Our speech therapist, one of three, came by today.  We discussed just going straight to solids.  For Adelina they are easier to eat and she wants to try what we are having.  She tasted yogurt and a smoothie today, if I'd had ten seconds I would have given her more smoothie, she LOVED it!  Unless she is formula fed we were told that most babies don't care for baby food and just to start with the things we eat and puree them.  So, welcome to the table little princess :)

Physical therapy came by yesterday and once again this little gal was ready.  She is able to sit for about 30 seconds, more if she is interested in what is in front of her.  She likes to jump up and down and is getting pretty skilled at push ups.  Her PT had her kneel up to a board but she didn't want to kneel, she decided to crawl over the board.  It was a little rocky on the other side since she didn't use her hands but just her legs.  We are now working on crawling.  It takes two people to more her arms and legs but considering that she has only been allowed to use her arm and chest muscles for a couple of weeks this is huge progress.  I thought for sure she would sleep the rest of the day, instead she threw up and took a cat nap.