Wednesday Night - Thank You

It is with the heaviest heart that I write this tonight. Our beloved darling Emma Brielle Flores past away this afternoon. Her mission on this earth was finally complete and she was called home to the only person that could love her more than Bianca and I, our Heavenly Father.

Writing this opens everything back up so painfully, but I feel that I need to on behalf of my family, to say thank you to so many people. So on behalf of Bianca, Eva and Emma please let me say with all the love a father can have, thank you all. Thank you for the prayers, thank you for the positive thoughts, thank you for the phone calls, the text messages, the emails, the facebook posts, thank you for the hugs and kisses, thank you for taking care of my little girls, thank you for sharing this time with us.

I struggle with words at this time, but I have such a strong conviction that there is a greater plan, a higher purpose for us here on this earth and that one day I will see my beautiful girls once again. I have never known love like this and I hope that for the rest of my life I can make my daughters proud and do things as they would have had me done.

The turn of events has been so sudden that no words can describe the total state of shock we are still in. Bianca went to the hospital yesterday around 12 and stayed with Emma until I arrived around 8pm. Our friend Kris had gone with me to pick up a new freezer we purchased to store all of the milk we had ready for Emma's one day arrival home. I can remember so vividly sitting on the couch and thinking, I am so tired, it's been a long day, I am sure there would be no harm in staying home tonight and seeing Emma first thing in the morning. How grateful I am for the still small voice that said, go see your little girl.

I arrived to find Bianca and Emma cuddled up together and resting so peacefully. I stayed and got to spend some wonderful moments with them and see how beautiful Emma was, squirming, kicking her little legs out and doing what she did best, making me fall in love with her all over again.

This morning I had a doctors appointment early and Bianca prepared to go to the hospital as I would be meeting her after work. My doctors appointment concluded and I came home to let Bianca know of some bad news. I don't want to make this update about me, but in keeping with the narrative, I was diagnosed this morning with Type 2 diabetes. My doctor and I discussed the events of the past two months and we concluded that the stress and eating habits and lack of sleep finally set my border line status over the edge. As Bianca and I discussed what this would mean for our family, the nurse practitioner called to let us know that Emma had began destating even with full oxygen.

We were told that she had a lot of residual from her last feed and that her bowels (tummy) looked distended. She had this same symptoms a few weeks ago and an x-ray then cleared her. Today's x-ray showed the same type of loopiness and  so the doctors order her to be on her side for a few minutes and a new tube to placed in her stomach to remove anything in there that may be causing her trouble. As her intestines were beginning to balloon they were putting additional pressure on her lungs, hence causing her to not be able to breath. Bianca quickly left to the hospital and I went for my newly prescribed medication.

As I was approaching my office Bianca called to tell me that things were not right, and that the doctors told her that Emma needed surgery immediately. I was beside myself as she was fine not more than an hour ago. I changed directions and went straight to the hospital. Along the way Bianca called me several more times to let me know that things had gone from bad to worse devastatingly quickly. By the time I arrived running through the hospital Bianca had been told that there was little hope for a good outcome.

I immediately wanted to talk to someone, anyone, upon my arrival. I was not there more than 2 minutes, when Bianca announced that our nurse was making a b-line right for us. When she told me that the doctors would like to speak to us in another room, my heart sank. I could not believe this was happening and as I write this through tears, I still cannot believe this happened. 4 doctors and several nurses were awaiting us, and in the middle I saw doctor Jones, who we had met on our very first day of arrival at the hospital. He had answered so many questions for me that day and was so compassionate that looking in his eyes, I knew everything had been done, but that Emma was not ok.

Emma's cause of death was a very rapid moving disease of the bowels known as Necrotizing enterocolitis (NEC).

It is the second leading cause of all premature infants and can move as fast as a heart attack or stroke. Although the first x-rays showed slight signs of infection, the condition spread so fast that even with the emergency surgery there was nothing of her intestines that could be saved. Her little tiny bowels had essential died living her with no chance of survival. I looked and pleaded for any other option, but there was none that could be given.

Her little body had already gone through so much that I just could not take the pain of her hurting any more. I wept like only a parent could for their child. Emma was still alive, essentially on machines only. Her bowels had swollen to such a level that the doctors could not even put them back inside her little body to close her after surgery. She was wrapped as best as possible in sterile gauze, a diaper and tape. My little girl was being held together by such fragile things that it broke my heart into a million pieces. She had been so heavily sedated for the surgery that she was effectively paralyzed and not able to move what so ever. She was just not our squirmy wormy and I was so destroyed to see her this way.

We were moved to a separate room where we got to hold her for hours and just be together as a family. Sadly the doctors left it up to us as to when we could remove the breathing tube and medication that were effectively keeping her alive. I was just not prepared to make that decision, and although the doctors and nurses gave us amazing care, I felt like it was so unfair to have to make me decide when she should go. It's been a few hours now so I see their wisdom and the little choice they had, but I do not wish this on my worst enemy ever. After several hours and holding and kissing our little girl, I made the call to remove her breathing tube and IVs so that she could finally rest. Every 30 minutes or so the nurse would come in to administer additional pain medication, but I could see that Emma was starting to feel things. Her body had been through so much I just could not let her suffer anymore.

For the first time since the day she was born I saw Emma with no mask, no tubes, no wires; it was just her. Perfect little Emma was so beautiful today, she is daddy's little girl and I had my breath taken by her. She survived for a few minutes longer and we held her in our arms until her little heart stopped and we knew she was  gone. I pray that no one ever has to hold their baby and watch them slowly pass, but if she had to go, I was glad we held her. We never let her go and we never will. She is my light, my world and I would die for that little girl. I would do anything that was ever asked of me for her to be back.

I know that Eva was there to meet her today along with countless members of our family who have passed on before. She is not alone and hand in hand she walks now with Eva Aimee to go about doing the Lord's business. I find myself asking so many questions as to why, but it is not my time table, it is not my decision - I leave it in God's hands and trust in him.

Our lives will never be the same and I know He hears and answers our prayers. We prayed for so long to be parents and we are; we will forever be Mom and Dad to two little angels Eva Aimee and Emma Brielle.

I don't know if I will write again or what we will do next, but again I want to say a sincere thank you for all of you who have prayed and watched over us. We had an army of faithful people praying for us and your prayers were felt each and every day. I am humbled at the amazing at the out pouring of love for our little girls, I could not ask for more. I consider each one of you family now, as what we have gone through transcends friendship. Thank you for being our angels on this earth.

We love and care deeply for each one of you and on behalf of Eva and Emma - THANK YOU!

Tuesday midday - quick update

So far Emma is doing good and has been resting. She has had no Bradys or Apneas and she has shown no signs of bacteria or other complications. 

She is being taken off of the iv fluids and going back to feeds so we are very happy about that. 

She is also being slowly taken down off the respirator from 40 breaths a min to 30. This means the machine breathes 30 times and she breathes 10 on her own. Slow and steady :-)

And thus continues our roller coaster...

Monday night - small step back

Last night we were here very late and uncle Benjamin and aunt Vaueli got to come and see baby Emma. It has been such a blessing having some of our oldest and dearest friends come visit and spend some time with our little miracle :-)

This morning very early Emma starting to have lots of breathing issues, so much so that she had over 17 Bradys all before 10:00am. At that point she was taking a lot longer and more stimulation to come back. The nurses and doctors finally agreed it was time to intubate her again. 

This was a serious blow to both Bianca and I as we (the three of us) had been so comfortable with the progress being made. As so often I am reminded, the nicu is a roller coaster. 

It took a little over an hour for the doctors to place the tube back down her throat and get a new line started. Sadly she has been pulled off milk feeds again and is back on IV fluids and electrolytes and lipids via IV. She also did have some bleeding from the pressure and so she has had a rough day. 

The doctors have ordered lots of tests and so far everything has come back looking really well. She had an X-ray this morning and her chest and little lungs are doing well which means this is not a developmental issue; more this is an issue with her stamina. She is tired of doing so much so soon. 

In reality I have to remember that she is a little over 27 weeks and so she has been doing all sorts of things that big kids do :-) looks like she finally needed to take a break. 

The good news is since about noon today she has had no Bradys and no Apneas. She is resting well and seems really comfortable. I am happy she is taking a break although it is a tiny step back. 

Sometimes we have to slow down and take a step back to move forward!

Thank you all for your love and prayers...it's still a long road to go :-)

Saturday Evening - Night Rounds

We are about to go through rounds for the day, but a quick update. Emma is having a few more bradys and apneas than she was having before, but that is just the roller coaster of the NICU.

Her weight has been steady at 1lb 10oz although we are hopeful that she will start gaining lots more weight - BECAUSE SHE IS ON FULL FEEDS NOW!!

Yup I mentioned it last night, but she is finally on full feeds and off all additional liquids. My very fist question this evening will be - when do we get that pic line out of her :-) - side note (after I wrote this we got the all clear - line is coming out YAY!!)

She is loving her time with Bianca and her way fun kangaroo care. One day at a time is all we can ask for. She has begun developing some breathing issues, but we both think this is more due to the mask then anything else. Nurses also think it may be that she is feeding so much more now, but its not making us super happy. Other than that things are going as well as we can expect and we are happy and glad that she is doing well.

Today also is one month since Eva left this world much too early. We were able to take flowers and visit with her this morning and were reminded of that amazing, scary, difficult and humbling road we have been on. It is hard to believe that so much has happened so fast. I can't thank all those who have worried, prayed and pleaded to God on our behalf. I feel that all of those prayers have been answered and we are so thankful for the blessings in our lives.

A big thank you for all those who have donated to the March of Dimes on behalf of Eva, we are so happy at the amount of money that was raised for this amazing cause. We have met so many parents, nurses, doctors and dear friends now that work miracles each and every day that we feel so humbled that there are still very good people in this world. We will be closing the site tonight and again a sincere thank you.

To end this evenings blog post I'd like to include a poem/story that I received over ten years ago from one of my dearest mentors Coach Deby Lewis  - Thank you Coach for being such an amazing person - not a day goes by that I don't use what you taught me about being a leader, a student, a role model and most importantly a friend! I didn't appreciate this I think when I was 17, or at least not at this level and I am sure in another ten years I will look at this again and realize I still don't appreciate it today :-)

The Value of Time:

Imagine there is a bank that credits your account each morning with $86,400.

It carries over no balance from day to day. Every evening deletes whatever part of the balance you failed to use during the day.

What would you do?

Draw out every cent, of course!!!

Each of us has such a bank. Its name is TIME.

Every morning, it credits you with 86,400 seconds. Every night it writes off, as lost, whatever of this you have failed to invest to good purpose. It carries over no balance. It allows no overdraft. Each day it opens a new account for you. Each night it burns the remains of the day. If you fail to use the day’s deposits, the loss is yours.

There is no going back. There is no drawing against the “tomorrow”. You must live in the present on today’s deposits. Invest it so as to get from it the utmost in health, happiness, and success!

The clock is running. Make the most of today.

To realize the value of one year,

ask a student who has failed his final exam.

To realize the value of one month,

ask the parent of a premature baby.

To realize the value of one week,

ask the editor of a weekly newspaper.

To realize the value of one day,

ask a daily wage laborer who has a large family to feed.

To realize the value of one hour,

ask lovers who are waiting to meet.

To realize the value of one minute,

ask a person who has missed the train, the bus, or a plane.

To realize the value of one second,

ask a person who has survived an accident.

To realize the value of one millisecond,

ask the person who has won a silver medal at the Olympics.

Treasure every moment that you have! And treasure it more because you shared it with someone special, special enough to spend your time. And remember that time waits for no one.

Author Unknown

Friday late night!

Emma has been doing very well with a few oxygen problems since yesterday. They have started her on a new cpap mask that we aren't exactly thrilled about, but the old one was starting to irritate her skin around her nose. 

So the good stuff, tonight we stop all fluids and she will begin full feeds!!! Yay much rejoicing she is a big girl now :-) 

I also feel much more like a dad! I got to hold her for two hours and she pooped on me! Welcome to parenthood :-)

All her other stats have been good and she is really starting to fill out more. Her little face is much more full and she has big eyes that love to look around. 

Doctors just came by to do rounds and we did ask about Allison's question: her next mike stone is full feeds then we need to get her off cpap all together. 

Her breathing has been at 26-30% with this new mask where she was stable at 21% which is room air, with the old mask. Hence why we aren't thrilled with this new one, but we are hoping in a few days she will be used to it and good. 

She will probably be on cpap for a few more weeks at this point then we can start hoping for a spot on the 8th floor aka feed and grow time. 

Thanks for all the love and support as our road is not over yet :-). Tomorrow also is one month since Eva passed so it is a bitter sweet moment for us. 

We are so happy for the blessings in our lives and our wonderful children that have taught us so much. Love you angel baby Eva and little sister Emma !

Thursday morning

Quick update - Emma received another blood transfusion on Tuesday and that seems to have really helped her. Very few Bradys over the past three days and she is tolerating her feedings very well. 

She is now up to 9cc and she has been lowered on her lipids (fats) and tpn (electrolytes) in anticipation of her taking full feedings soon!! Hopefully once that starts she will start gaining weight fast. 

Taking one day at a time but we could not be happier with her :-)

Sunday Morning

Emma did great through the night with very little bradys. She did have to be suctioned a lot, but that is part of her normal routine and we are super ok with that. She is beginning to hurt a little because of it, but the doctors have ordered some rash cream for her.

She is also up to 4cc of feeding again, so fingers crossed that she tolerates it well! Bianca and I both woke up a little under the weather, so we may not go see her today as there are strict rules about being sick and in the NICU. I am hoping we both feel better by this afternoon so we can at least say hi :-(