Bittersweet

Today we laid Livia to rest. Her Grandmoms and Grandpop as well as her aunts and uncles and Great-Grandmom and Great-Uncle were there. We loved Livia very much and she will now join her sister in Heaven and watch over Nina. We will never forget the two beautiful baby girls we loved and lost.

Today was also Nina's upper GI study and it went well, everything is moving along good, she does not having any GI problems,so she was able to start back on a tiny amount of milk late this afternoon and that will increase over the next few days. Nina's still off the cannula, the only thing in her nose is her feeding tube.
Nina had lots of visitors today, so she was a very happy baby. RALLY TIME!
Nina + Daddy = LOVE

Day 80- Rally time

Last night Nina's nurse weaned her to 21%O2 (room air) so today Dr Cleary said let's try her without the cannula, so around 2 pm, for the very first time in her life, Nina was breathing on her own without any assistance. (Nurse Karen left the tape on her face just in case) but Nina is doing great so far on her own. We are so proud of her. Nina is weighing in at 3.5 pounds and hopefully tomorrow after the GI study, she can eat.

Nina's first test

Because Georgia and Livia died from NEC, Drs are being extra through with Nina and her GI health. Today she had her lower GI study and it was all normal. On Thursday she will conclude the study with her upper GI.
Nina will not eat until after the study is complete(Thurs afternoon) she will be given TPN to sustain her. The TPN will not affect her liver/bilrubin b/c she will be on it for such a small amount of time.

Thank you all for your well wishes and kind words as we continue this journey.

Keep On Keepin On

Nina had a good day, let's start there. Her belly distention subsided, from 29 cm to 26 cm and she continues to be a very vigorous little girl. Again the doctors assured us this course of action is not being driven by Nina's behavior but rather due to the recent circumstances with her sister. That being said they want to rule out any congenital condition, i.e. present at birth.

She was very active and I got to hold her for 2 hours while Judith and Appie (Judith's mom), looked on. I even got to change another poopie diaper. The plan is still to hold her feeds for another day and proceed with the barium enema but her continued bowel activity continues to be a good sign. The surgeons from Temple will also consult and work with the NICU docs but we are hoping they might resume feeds tomorrow or Wednesday. Her weight was up to 3 lbs 4 oz, but 1 oz was probably the arm board where her IV is placed, nonetheless progress.

Judith and I are overwhelmed with your thoughts and kind words for Livia. We hope you will continue to share your thoughts with us and Nina when she is older so she will know what a special miracle she was part of. We will be having a private memorial service for Livia some time this week where she will be placed with her sister Georgia and Grandpop DiYenno, we know he will take special care of them.

Enough with the sad stuff, on a lighter note Judith and I actually partook in some fun tonight and went and saw a movie, Spiderman 3. Honestly don't waste your money, but some cool special effects. We went to our favorite store, Target and a sporting goods store, although it was to buy flip flops for Judith. We would have stopped at Rita's but we are now on a modified South Beach diet, so no special treats at this time.

Please continue to keep Nina in your thoughts and prayers

Keeping a Close Eye on Nina

First, thanks to everyone for their kind words about Livia. She was truly the best of us.
Judith, Nina and I will miss her dearly.

When we got to the hospital today we did not get the news we were hoping to hear. Dr. Chang and the care team have decided to hold Nina's feeding for 24 - 48 hours. Her belly has been a little puffy lately and this is being done strictly as a precaution. When we spoke further to Dr. Chang he assured us that her condition raised no red flags but given what has happened in the last 24 hours and 50 days ago to Georgia, the team wants to be over cautious and explore all avenues.

The plan is to hold her feeding for 24 - 48 hours and supplement with TPN, not exactly what we wanted to hear. But Dr. Chang explained the risks associated with TPN, which has more negative effects when used for longer periods. It is a necessary evil because despite the risks, TPN will give Nina what she needs until the feeds resume.

On Tuesday or Wednesday, Nina will have a lower GI exam with a barium enema: http://en.wikipedia.org/wiki/Barium_enema

The enema will track how her intestines are processing the contents of her stomach, i.e. food. This will be followed a few days later by an upper GI exam, sorry no details on this as of yet. Hopefully they will find nothing and attribute the growth in her belly to what we have been calling her Buddha Belly but if something is found we will hopefully have time to correct.

On the positive front, she is not acting sick and shows no signs of any other stress. She is breathing great, pooping and peeing and is very vigorous. Please say prayers for Nina.

Livia May

We are sad to report that Livia passed away today at 5pm. She developed a perforation in her bowel or NEC. Judith and I were able to make it to the hospital in time and she passed away in my arms. We want to thank everyone for their love and support for all of our girls and please keep little Nina in your thoughts and prayers.

Here is one of my favorite pictures of Livia from just a couple of days ago:

Day 75

Oh where to begin...
First we must celebrate Nina for she has reached
3 pounds!! She is on 21% O2 on her cannula and we expect her feed time to decrease in this coming week. June will be Nina's month to kick some NICU ASS!
YOU GROW GIRL!

Our sweet Livia does not have that much to celebrate lately, she is still having nutrition problems and today Doc took her off my milk and put her on this special formula called Progestermil: used for malabsorption/inability of the bowel to absorb nutrients normally. Please Please Please work... She needs to gain weight and get healthy. Her liver is inflamed and she is just not turning the corner to where she should be at this age. Next week we are considering transfer to CHOP where she will be seen by many Specialists. We have to give her a fighting chance.