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.

Update

Today we had our meeting with Doc Snyder and some other key members.
Long story short...They are giving Livia about two weeks to get it together with her feeding and breathing...
If she does not improve over these next two weeks we are going to seek a second opinion for her care at either CHOP or St Chris's. We are feeling very anxious and concerned for Livia b/c tonight she refused her cannula try and stopped breathing and needed to get bagged plus she refluxed about 9cc of milk (she has not done that in over a week)
As far as Nina, she needs to get her feeding time down to 30 minutes before we can give her a bottle. She and I will also work on breastfeeding. She needs to get bigger and weaned out of isolette. I am sure a lot of other things need to happen that I just can't think of right now.
We are hopeful she will be home by her due date of 7-1-07.

Smiling on the outside

Tomorrow we are having a "family meeting" (meeting with Dr, nurse, case manager,social worker to talk about babies) and up until a few hours ago I was happy about the meeting, but I was told these meetings are not the norm and only are held when the babies are sick/have a long road ahead of them.
The meeting is being held on account of mostly Livia...
Livia is a pretty sick kid. At the meeting we will address such issues as why are her bilirubin levels increasing?What does this mean for her in the long run?What about her feeds? Will she continue to feed continuously? for how long? when will you make the bump up to 3 hrs on and 1 off? When will you add formula? What if she cannot tolerate it like a few weeks ago? What about her swelling? What about her stomach distention? How much longer will she be in isolation? Is she still too sick for PT? How long will you keep her on CPAP/cannula before you want to transfer her to another facility? Will she need a tracheotomy ? When will she ever come home? Will she ever be normal? Am I ever going to get to hold my babies at the same time?

WHAT IS THE PLAN?

Gas Girl becomes Cannula Girl

Livia did great her first try on the cannula. For now she's on for one hour every six hours. YOU CAN DO IT LIV!

Gas Girl

This morning's call into hospital found Livia at 38%O2 on CPAP with a belly full of air and gas. Drs are keeping an eye on this. To help alleviate some of the air, Livia is going to take a break from CPAP and go on cannula once every 6 hours. She is going to be getting drops for her gas and her feeds have increased to 9 ML an hour over 4 hours (36mL) and fortifier in the milk.

Nina feeds have increased to 35 ML but they have increased the time from one hour to one and a half hour (she was not quite ready for a one hour feed)

Day 71 updates (almost 3 pounds)

Livia is on CPAP holding her own. I held her for a while today (yeah!!)and she hung on to my finger most of the time while sucking on her pacifier. So far she's tolerating her milk and no big changes with her today. She got her first vaccination tonight and did well.

Nina caught up to Livia in weight, both girls are 2.14 pounds! Nina is doing well, Nurses want to wean her from 23%O2 to 22%O2 but Nina just won't have it. She desats in 30 minutes after the change. She'll let them know when she is ready. Today she got promoted to one hour feeds. She is getting 34ml. So far so good...
Jason and I are trying to handle Nina more now that she can tolerate it. We are dressing her to come out of isolate to be held, we are taking her temp and changing diapers while we are there.

We look forward to the same interaction with Livia some day very soon!!!

3rd time's a charm??!!

Livia is off the vent. This is her third try coming off and we are hopeful
this is it! Livia weighed in at 2.13 oz today. With her weight behind her, this should be it! No more machines for us!

Nina is growing (2.11oz) and is just hanging out eating and pooping(you know regular baby stuff) She's very alert and tonight we put up some black and white graphics on her isolate so she can check out when she wants.
Nina can't wait for her first game.

Look Ma! I pulled my feeding tube out!

Nina hated the feeding tube in her mouth so she pulled it out (you go girl!) and now she is feeding through her nose like a big girl!

Nina had a good day, she is done with her 2 month vaccinations.
Her air pressure flow on the cannula has been decreased to 1 liter and she is hanging tough on 23% O2.

Keep your fingers crossed for Livia, she is on basement settings(low O2 support and she's doing most/all the breathing on her own) on the vent and expected to come off either tomorrow or Monday.
So far she has tolerated her milk. She is getting 32ml over four hours continuously.

The girls are getting big. Nina is 2.10 oz and Livia is 2.12 oz.

I think I can I think I can

OK we have been here for 68 days now and enough with this ventilator Miss Livia! No one else in the NICU has one but you! Mommy and Daddy know you can do this.
Just like the Little Engine...I know I can I know I can...
Livia is in wean mode on the vent and has starting her feeds back slowly.
She is getting 16cc over 4 hours and will gradually get back to full feeds.
Hopefully she can do this and digest her milk like a big girl. COME ON LIV!!


Today Nina came out for a while all dressed in pink and ready to party.
Nina's doing great. Her air pressure flow has been decreased from 2 to 1.5 liters. She is getting 33 ML of milk/formula on her same schedule which is 2 hours on 2 hours off. We need the inside of her nose to get less swollen so they can take the feeding tube out of her mouth and put in her nose. Now that's she is getting bigger she plays with the tube and gags and her heart rate goes down and so does Mommy's...

Day 67 update

Nina received her first round of vaccinations today. Her feeds have gone up to 32 ML and she weighs 2.9 ounces. She had a great day with Mommy holding her and loving her up.

Livia has been off feedings since last night and will continue back tomorrow with a decreased density diet (only breast milk) The GI specialist came by today and said Liv looks good. She is active and not sick...her belly is soft and round... Little by little Docs will increase her calorie as well as the volume of her feeds until she can tolerate it all. Livia is much less swollen then she's been in a long time. She weighs 2.10 oz. They are weaning her off the vent for hopefully early next week. She had hours of Daddy time tonight loving her up.

Day 67 Nina photo shoot

Nina Rose weighing in at 2.9 oz and 13.5 inches long

Blog

The girls have their good days and they have their bad days ...lately we have been in a bad day mode and it's hard to write about those... I even thought about stopping this blog b/c sometimes it's just too much, but I want to write because I want to share this with Liv and Nina one day. The blog is for them.

Jason wants me to focus on the good things happening...well Livia's respiratory continues to get better...Her lungs look the best they have in weeks. She is still on the ventilator and Doc is hopeful to get her off by next week. What we are focusing on now is her feeding issues. She was getting 28ml of milk/formula over 4 hours and then refluxing about half of that for a few feedings. Doc stopped feeds tonight and is just giving her IV fluids until tomorrow morn when she will just get plain milk. The reflux started Sunday night when they added formula(for extra calories) to her feed. She is also getting a visit from the GI specialist tomorrow.

Nina had an EKG today which was normal. She was having a few Apnea and Brady's episodes so Doc just wanted to make sure she was OK which she is. Nina also had a visit from the Physical Therapy lady tonight. It was a good report, she evaluated her muscle flexibility and Nina is great. She is lifting her head and is very active. PT lady will follow Nina's progress weekly until we get the heck out of here! Liv is too sick to get PT yet but soon...
Also tonight we received papers for Nina's first round of immunizations. This may sound weird, but I can't wait to sign the papers and have her get the shots...In my mind this means that she is going to make it and come home one day. Again Liv is too sick to be talking about shots, but soon...

you win some you lose some

Great day for Nina. She's cruising along with her feeds and her cannula loving life and gaining weight.

Nina can't wait to meet her sister

Livia is not doing so hot. Her vent settings have increased as well as her O2 support. She is also having a problem with reflux even though her feeding tube (NJ tube) is located down into her small intestines. Dr Cleary did an xray and saw the tube location was a bit off so he put in a new NJ tube tonight which should fix the problem.
They are pulling up a lot of mucus from her vent tube and that is getting cultured tonight so we will have 24 hr results tomorrow night.

Dandelion Wishes

When I was a little girl I picked dandelions for my mom and she would be so happy as I watched her put them in a glass of water on the windowsill. These dandelions were not weeds to me; they were a beautiful gift that I could give to my mom to make her smile. They were not weeds because they soon became magical wishes that I could wish upon and blow.

Now as an adult I walk past the dandelions and dream of the day my girls will pick them for me. I walk past the “wishes” and pick one up, and wish and hope and dream for the day my baby girls will come home and then I blow.

Livia (in pink) and Nina (in red) in their first outfits. Thanks Maria!

Nina came out to play with Grandma

Nina and Livia got a nice visit from Grandma Fox today. While Livia took a nap, Grandma held Nina for the very first time. Nina loved it and so did her very happy Grandma!


The girls are going well today. Nina is down to 23% O2 support on the cannula, she gained some weight and is up on her feeds.
Livia is also down on her O2 support and her vent settings. She has lost more excess fluid and her feeds are up too. The PICC line is out and she is done with the meds and TPN.

Happy 2 month B-day

OK we do have a few things going our way.
I'll start with Nina. SISTER IS OFF THE CPAP AND ROLLING WITH THE CANNULA.
Dr. Moom said that b/c she was at 21% O2(room air) on CPAP and her nose was getting super irritated by it, that we can try her on the cannula and goodbye to CPAP. Her cannula O2 support is set at 27% as of today.
She is loving life and says thanks for the wonderful Birthday gift.

Livia received a gift as well. She is done with that horrible TPN
TPN is cool at first when the baby is young, but Liv has been on it for so long it was messing with her liver. She's OK and we are happy she'll just be getting milk now. Livia lost another ounce with is great b/c that means she is getting rid of that excess fluid.

Day 60

Dr. Moom called after his morning rounds to give updates:

Livia is less puffy and lost 1 ounce (yeah!!) Her O2 support is down to 23% and he is talking about taking the breathing tube out this weekend if she behaves. She has two more days of antibiotics and she should be off the hydracortizone in a couple days too.
Her milk intake has increased to 4cc an hour continuous.

Nina gained an ounce and she has been promoted to using the cannula for 4 hours and then CPAP for 4 hours and so on. Her feeds have stayed the same.

In all, I think it's pretty encouraging news this morning.

MRSA sightings..no that's just my Appie

Livia is doing a bit better. She did not gain any fluid weight overnight so that's great news. I held her today for a long time and she did great! She sucks so hard on her ET (vent) tube that it sometime goes in and out. (I think she's feeling better) Her vent setting continue to decrease and her milk intake continues to increase.

Nina had a big day today. She finally was held by her Appie (DiYenno term for Grandmom..long story, but named by niece Ada)
Nina needs to gain some weight so Dr put on her a cocktail of half milk and half formula so she gets more calories. She seems to dig it so far(today was her first day on it)
The MRSA seems to be back..yep...they took a nasal swab and that pesky little bug is in there. She's not acting sick so no drugs for her.
Nina's does great with her cannula and when she gains more weight she can try to be on it a little longer.

Both girls get their eyes examined last night for ROP and so far they are still just immature retinas.

The good, the bad, and the bloated

(The good): Livia's respiratory is improving, her vent settings have decreased as well as her O2 support (down to 26%) Her cultures all remain neg so Dr took her off two of the antibiotics today. Her feedings started back up (8cc over 4 hours) Hopefully we will be on full feeds by weekend. She is peeing up a storm which is great since (The bad) she gained 6 oz over the past two days. Livia now weighs (the bloated)2.13 oz.
I held Livia for about 3 hours today. While holding her the harp player came by (there is music therapy at the hospital) and played "Good Night" by the Beatles.

(The good) Nina is now allowed to be on cannula for 4 hours at a time. She loves her cannula and we love seeing her on it! She is tolerating her increased food intake of 30cc 2 hours on 2 off. We finally made it to 1 ounce. She is up to 2.7 pounds and she began nippling this week.
She's still in the back isolation room(the bad) even though she is negative across the board for infection.
Daddy (the bloated)after too many bags of Cheetos from the hospital vending machine.

Livia

Livia's O2 support has decreased(that's good), her xray look better and so does her blood gas.
Her edema has worsened and her urine output has decreased. Dr says her capillaries are leaking fluid into her tissues. They are giving her meds to help with this. They are paying special attention to her kidneys and liver, so far OK. Her labs are coming back neg for infection but DR have her on 3 bacterial antibiotics and 1 fungal antibiotic. Please keep her in your thoughts as we go through this latest hell.

Update:
Dr are saying the edema may be linked to her adrenal glands not producing sufficient amounts of cortisol?? Who knows, they are taking a stab with this and going to put her on a 3 day course of hyrocortizone to see if that helps. Something needs to work soon, she gained 3 oz of fluid just last night. If not they are calling in for an Endocrinologist consult from CHOP or St Chris's.
All we know now is that her respiratory system is stable, she's comfortable.
Dr told a urine sample today to see if there's an infection there.
Tomorrow they may begin her feeds.

Dad held Liv for 2 hours tonight. She loved her "Daddy time".

8 week mark- can anyone think of a better term than roller coaster??

Big issue for Livia is her weakened respiratory system coupled with the edema which makes it all the harder to breath. She's on the vent and it's helping her. Her edema(swelling) is getting a little better. She is on a stronger med to rid her of the excess fluid. Dr have stopped her feedings for the past two days and she will begin back tomorrow on her new NJ tube.
Since she has not be acting herself the past few days they started her on antibiotics to fight anything that may be brewing. The 24 hr mucus culture was neg. and we'll see what tomorrow brings with the 48 result.
What stinks is that all the progress we were making with her the past 2 months is gone..we are starting all over with her.

Nina is doing great(thank goodness) The stuff around her nose is from when she is on CPAP to keep the prongs in place. She is doing really good on the cannula and if all goes well she will start "sprinting". "Sprinting" in when she takes turns during the day on CPAP and cannula. She is up to 2.5 pounds.

Two steps back

They told us that the NICU is a place where we go one step forward two steps back... (whatever)
This mornings call into hospital said that Livia had another bad night(lots of A's and B's) so they are putting her back on the ventilator later this morning for the next week or two so she can chill out, relax, and grow. We remain optimistic for her outcome.

PartII

In addition to Livia's tube down her she is getting her food through a NJ tube which is a feeding tube which goes directly into the jejunum, a part of the small intestines.She used to get the food through a tube that went directly into stomach(the kind Nina has and most of the kids here in NICU land have) but Dr's said it was maybe contributing to her breathing issues. Today's lung x-ray was not the greatest. A lot of white (white in xrays is bad) Basically today sucked for Livia...

Nina is going great. She's down to 23%O2 support on CPAP and I held her for 2 hours on cannula.
I am afraid to get too excited about her progress and jump to paint the nursery b/c anything can happen ....it can all fall apart.One day we are up and one day it just falls apart.

She's Too Young to Know Any Better

At this point in her life, Nina doesn't know any better. She doesn't know that each summer the Phils are going to break her heart, but you have got to love her loyalty. Nina and Livia have to be the world's smallest Phillies fans and we will be sending this in to the Phils, can you say free tickets! Each of the girls has an infant Phillies hat and Livia has the ticket from opening day hanging in her pod.

Not much to report today, Judith got to hold Livia this afternoon and I got to hold Nina tonight, Kangaroo style. Livia continues to show swelling, still on the CPAP. She has bradycardia and apena episodes now and again but the nurses say she does fine most of the time. Feeds are increasing and hopefully soon we stop the TPN.

Nina continues to be a champ. Her O2 levels on her CPAP are down to 25% and she did 70 mins on the nasal cannula tonight with Dad. She settles in nice when the nurse puts her on my chest and sats really well. Nina will continue to take the nasal cannula for a spin once a day as she builds up her strength.

Keeping The Faith

This afternoon I got to finally hold Livia. It went OK up until these pictures were taken and she dropped her heart rate and O2 sat and had to be bagged while on my chest.... All in the life of a preemie mom... Livia is swollen and yellowish from the high billirubin. She's still on CPAP and does good for the most part. I think her face is a bit swished in this photo from the CPAP. They are increasing her feeds to 10 cc an hour. The sooner she gets food increased the sooner she will be off the TPN crap and return to the pinkish cutie she once was.

Another big night for Nina! Dad did Kangaroo with her for an hour on the cannula. She did great! Her sats were high, she was blowing bubbles with her spit... Jason may have exhaled 3 times during this hour hold.

Cann-u-la Believe It?

Huge night for the Fightin' Foxes. Nina was allowed to take a try on the nasal cannula: http://en.wikipedia.org/wiki/Nasal_cannula (thanks Jen C for the link)
She did really great, it took her a few minutes to get used to the different prongs(she sneezed a bit) but after a while she settled in and so did we. We want to thanks Nurse Sharon for making this happen for us tonight(we were going to wait until Friday.


The plan now is to let Nina breathe on the cannula once a day while doing Kangaroo for as long as she can tolerate. WE ARE SO PROUD OF NINA!! Livia had a good day. She is going to up to 7cc over an hour. She really needs to get up her feeds so we can put the TPN away. Her blood gas did not come back so good (Carbon Dioxide too high) so the plan is to do another blood gas tomorrow and decide if she should come off CPAP and go back on ventilator. This would not be the end of the world. Livia may just need some extra time to get it together. Tonight she had bad Bradycardia episode so I think she may be trying to tell us she needs a rest.

Day 51

Look what Nina and Livia made for us for our anniversary!

Nina is being a good girl today. She's up to 2.3 oz!
She is down to 28%O2 on CPAP. I got to hold her during the day and she was being so good that she was able to get out for a second holding by Dad. Her feeds have been increased to 26cc every 2 hours and she is handling the feeds great.Keep up the good work sister Nina!

Livia is doing OK with her CPAP. She's st 48%O2 and no having any episodes. Her blood gas results are not stellar so she is staying at the high level of 7 for CPAP for now. Livia is weighing in at 2.5 oz. We do not know how much is fluid since she is still swollen. Livia was having some residuals from her feeds so they decreased her feeds to 4cc over and hour and that seems to be working better for her.