Feeding Update

 

It is hard to believe that after all of the things that Abigail has gone through (liver surgery, heart surgery, etc.) that learning to eat again would be so difficult.  The last few days we have continued to work on Abby taking the bottle at every other feed.  Her progress has been slow going and she is usually able to take 1/3 of her full amount (now 70ml) through the bottle.  The remaining amount is put down the tube in her nose.  We were trying to give her time to catch back on before other measures were taken but this could take a while to get up to the full feeds for all of the feedings.  Needless to say we have been really frustrated lately.

G-Button

The decision was made Tuesday to go ahead with the process of putting in a "g-button" to assist with feedings.  A "g-button" is essentially a direct port to the stomach.  It will be yet another surgery but it will make going home a reality.  We would continue to work with Abigail on taking the bottle and run the rest of her feeds through the the "g-button".  We had hoped we wouldn't have to go this route because the poor girl has gone through so much but we could be home shortly and that would be really fantastic.

Fundo

Before this next operation occurs several tests are being run to rule out reflux.  Yesterday, she had an Upper GI test done and today they put another tube done her throat to track ph levels.  This ph probe will be left in for 24 hours and will determine if Abigail has acid reflux or not.  Since she is having occasional spit-ups the doctors are trying to find out why.  If indeed, she does have acid reflux it is likely that when they put the "g-button" in that she will also have to have a "fundo" or fundoplication.  The "fundo" has typically been paired with the "g-button" surgery because it prevents acid reflux. Unfortunately, it is also more invasive.  In Abigail's case, she has already had significant surgeries and we hope that she doesn't need another one.  We will see what the results are when the test is complete but we are sure hoping that she will just get a "g-button".

Another tube, please...

Liver

On Monday, Abigail's bilirubin level dropped to 5.4, the lowest in a really long time. So that's a bit of good news and her color is quite a bit better as a result. Her labs can be done outpatient should we get to go home soon.

Next Step

Alright, so long story short, we want to bring this girl home! We would also really love it if she didn't need to go though a whole lot more just to get there.  Tonight we took a CPR course and checked that off the list of requirements to get to go home. It's been really tough seeing the possibility of getting to go home and having the fear of something occurring to hold it up. Abigail has been more active and alert over the past few weeks and we know she will thrive even more at home with nonstop attention. She is growing steadily and currently weighs 8 lbs 1.8 oz.

As the time creeps closer for Stephanie to return to work, the frustration of not having our baby home is taking its toll.  We look forward to writing about Abby eating, and smiling, and babbling while she here at the house.  More than likely there will be a surgery early next week. The extent of the surgery we will know more about in a few days.  Thanks for reading to this point and keep the prayers coming. Below are some pictures of the last few days.

Getting a sponge bath!

Actually not hating a sponge bath!

Resting with Mom