Saturday, April 7, 2012


What a week!  It all started on Monday.  Livy decided she was going to have a bad feeding day so we ended the day with both of us frustrated and tired.  She had only taken in about 14oz.  She should be eating at least 24oz like Aria.  Tuesday we went to see the Easter bunny and had a lunch date with some friends.  She didn't eat a lot but she didn't do her crying game either.  She spend much of the day with a bottle in her mouth but was using it as a pacifier.  We got home around 7pm and I put her in her bath which she ALWAYS LOVES!  She SCREAMED like someone was hurting her.  I just cried while I bathed her because I didn't know what to do.  I considered taking her to the ER if she continued to cry like that.  I took her out of the bath and made a bottle while she screamed.  I didn't even put a diaper on her I just wanted her to eat.  Nate finally came home and it took us hours to get 2 oz in her! She ate about 10oz total on Tuesday.  On Wednesday things worsened.  She screamed all day long and refused to eat.  I called the speech pathologist , our GI doctor and our pedi.  We were told to bring her to her pedi for a weight check.  We got there and found she had only gained a few oz in almost 6 weeks.  She was also very dehydrated.  We tried to syringe feed her with our pedi and she wouldn't take it she would just spit it out or chock on it.  We called her GI doctor right from our pedi's office and she was discharged with instructions to bring her to Children's hospital in Boston.  So we headed down to Boston.  We got there and they immediately brought us to a room and started to get fluids into her.  The ER was amazing!  Everyone was so helpful and nice.  Anything you wanted or needed they would get fast!  Best ER experience I have ever had.  They decided to admit her so we could figure out what was going on.  They brought us to our room and we settled in for the night.  The room was huge with a view of the city.  The next day a it felt like a million doctors came to see Liv.  We did xrays and a lot of observations.  They decided to keep us another night to see how she did with bottle feeding.  SHe has decided to only take in breastmilk and refuses formula.  They decided to have me meet with a lactation consultant since after taking out dairy and soy my supply depleted a lot.  I am now on medications to help.  SO when the lactation consultant met with me we discussed how I was still a little said I couldn't get them to actually breastfeed.  She looked me square in the eye and said well lets remedy that. She was determined to get Aria breastfeeding which would also help my supply increase.  It took and hour and a lot of crying but she did it.  She has been breastfeeding ever since! She did great when we got home yesterday and all last night!  So in a nut shell they feel Liv has severe silent reflux and she is on medication for it.   She also aspirates so we still have to thicken everything and add formula powder to the breastmilk to increase her calories.
We should know by next week if the medication is working and we have follow up appointments all next week.  Only time will tell if this is the whole diagnosis but I am thankful as of right now we don't have a feeding tube!  They did say that could still happen but we are all optimistic that we can do this without it.  Overall our experience at Children's was amazing.  OI don't have one complaint!  Everyone on staff was amazing and always went over and above.  They had someone on staff that came by just to bring stuff to make it feel like home.  They brought toys, bouncy seats and play mats.  They also had someone come and see how Nate and I were doing.  They have clowns that make ballons for kids, a theater playing The Lorax, they even have robots that you see in the halls bring the food trays to and from the patient floors and when you walk by it makes train noises!  The girls where a big hit and that always makes me proud.  I left the room to go wash bottles while Livy was sleeping and apparently she woke up while I was out.  When I came bake 3 nurses and a doctor were entertaining her.  Our friend Lisa lives a couple blocks from Children's and offered to let Nate and Aria stay at her place.  She was a lifesaver!  A free place to stay in Boston saved us a lot of money!  Over this week I have been so thankful for the love and support from everyone!  I know Livy felt it as well!  Times like these make me remember we are lucky and blessed with such great people in our lives.  So thank you everyone for everything, my family really appreciated every thought and prayer.

Here are a few photos

They had to put a diaper over Liv;s IV

So Cute

Aria was cranky so I put her in Liv's bed and she immediately stopped crying and held Liv's hand!

The scary Easter Bunny!

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