Moments That Change You

Party Bow! Happy New Year!

I think we all have moments in our life that permanently change us. You enter the day one person, the catalyst occurs and you come out of that moment different.  Sometimes for the better and sometimes not.

Most of these moments in my life have been unexpected. A lot of these moments have been so painful that I didn't think I'd ever recover. Some of them have been so sacred, tender and special that you didn't know your heart could feel that much joy.

2 days ago I had one of those moments.... and I'll never be the same. A better person. Full of more love and hope, and less fear. 

I got to hold my baby.  My living and breathing baby. Skin to Skin. It is a moment my heart has longed for for years.... yet a moment I didn't know if I would ever get. An hour of pure bliss that I wish I could have paused forever.

It was something that both Dalley and I needed. Her oxygen saturation has never been better than it was in that hour. Her heart rate came down in those minutes, and I felt a greater love and bond with her than I thought was possible. 

Dalley has been on antibiotics for a few days now. Her numbers have leveled out again and she is acting more like she did before she got the infection. The doctors and nurses are hopeful that the treatment plan is working. We won't know for a few more days and once the infection is gone, they keep her on antibiotics for 10 days to make sure she has kicked the infection completely. 

One of the infections has been identified and they are still waiting on a few more cultures to see if she has a fungus as well. 

I think I am coming down with a cold so I am avoiding the NICU today. It's breaking my heart to not be with her, but I am happy that Adam is still on break so he can go sit with her. Dad is reading her books today. 

I think him spending as much time with her is crucial. I know he is worried sick about leaving us here to start school. We just keep reminding ourselves to take this one day at a time. We can't look much past that point or it starts to feel too overwhelming. 

Happy New Year from our family to yours!

Thank you from the bottom of our hearts for the continued, love, support and prayers. We feel so much love during this time. 

Infection

Dalley opened her eyes to say "Hello!"

I read a quote today that says, "The walls of NICU's have heard more prayers than churches."

I can't say for sure, but I believe that to be an accurate statement. I would even bet the most faithful atheist has sent a few up in their moments of desperation and fear.

Today was a pretty good day initially. Dalley had a rough night last night and couldn't keep the oxygen levels in her blood up without a lot of assistance from the ventilator. They had to go up quite a bit on the oxygen settings last night. However, after several hours, she was able to maintain the oxygen on her own a little bit better so the ventilator settings were able to come down. They thought it was just a fluke thing since her numbers were back to normal by 2 AM.

The same thing happened again today. About 2 PM her oxygen saturation started to go down again and the ventilator had to pick up the slack. Everyone kept telling our nurse that it probably wasn't a big deal since the same thing happened last night, but our nurse (God bless her) just didn't feel it was right. She ordered a "septic work-up" to see if there was something bigger going on.

She was right.

Dalley has come down with her first infection. Being a 25 week old baby with a VERY immature immune system, it is nearly impossible for her to fight these infections on her own. They can be very serious.

They immediately started another IV in her head/scalp and started her on antibiotics and an anti-fungal medication.

We were walking out of the NICU doors to grab some dinner when the Neonatologist pulled us aside to tell us the news. Our hearts sank and swelled with worry. Our appetites went out the window. We had so many questions. Could this infection be deadly? Is the infection treatable? Can the infection cause permanent damage? Are infections expected? Are they common? Am I going to lose my mind in here?.... to name a few.

Right now it's just a waiting game. They took some blood cultures from 2 separate locations to try to identify what kind of infection it is. In the meantime, she has been started on some "Big Hitter" antibiotics (as Adam referred to them) that should get a lot of the expected and common infections. When the cultures come back in a few days and if the infection is identifiable, the antibiotic and treatment plan may change according to what the infection is.

Because of her size and age, infection is one of the most common threats. This is why they watch for them so closely. I am so grateful for our nurse (Lisa) today that just FELT something was off. It could have easily been dismissed. I guess that's what being a NICU nurse for 25 years will get you. They are hoping that the infection was caught soon enough and will be taken care of by the antibiotics. They did warn us that she may be on the medication for 7, potentially 14 days. We don't care. Whatever it takes to make her healthy.

The NICU walls heard a few more desperate prayers from these worried parents today.

 Dalley holding Dad's hand.

Dalley holding Mom's hand.

Brain Scan Results are In.

In the NICU world of peaks and valley's....today was a valley............that turned into a peak.

We were informed yesterday that the brain ultrasound was rescheduled for this morning instead of yesterday. AHHHHH! NOOOOOOO! WHHYYYYYY!

This morning we showed up at the hospital bright and early to be there for her "early" morning scan. We sat there for hours. As we waited, the nurse practitioner came to us and informed us of the new developments.

Her most recent hematocrit level had dropped "significantly". It had dropped from a 39 to a 29 in a 24 hour window. This is a substantial decline. She said it could be a result of a faulty or diluted blood draw, or there truly is something going on that is concerning. Basically a 10 point drop could indicate what we have been dreading. A major bleed on her brain. This news sent us into a tail spin.

Her heart rate was also elevated in comparison to the baseline that she has set over the past week. This further exaggerated the emotional tail spin we were experiencing.

My emotions got the best of me today. I felt hopeless. I felt angry. I felt defeated. How do parents survive this? I seriously want to know.

I had already convinced myself that the results of the brain ultrasound were going to show a bleed on the brain.

They decided to repeat the blood draw and re-run the hematocrit test. This time the results were a little better. It had dropped from a 39 to a 33 (instead of 29). At this point, they felt it best to start her on her second blood transfusion. Her body being low on red blood cells results in a lower level of oxygen that is in her blood. The oxygen that her growing and immature organs desperately need right now.

FINALLY at 2 PM the ultrasound technicians made their way into our room. They performed the ultrasound and said the results would then be sent to the radiologist to analyze. The radiologist would then contact the neonatologist with the reading. But because the scan was completed so late in the day, we may not get the results until the following morning. Queue another tail spin.

Luck was on our side and 2 hours later the results were in. To my utter amazement and complete sense of gratitude and relief, the results were good. Mostly good. There was no bleeding on the left side of her brain and there was maybe a potential small bleed on the right side of her brain, but it was small enough that the radiologist couldn't confidently that it is actually a bleed.  As far as results go.... they are as good as they could be without being completely clean. When I think of it in relation to a scale of 1 to 10, the results would be a 9 (with the potential of being a 10).

Today was a hard day. For Dalley and her parents. She had to have 2 chest x-rays to fix the placement of her PICC line, a blood transfusion, an IV placed in her head and her brain ultrasound.

I was a wreck. Visibly so because they sent a social worker in to talk to me to see if I need medication or therapy. (I probably need both).

But we've made it a week. She is 1 week old today. She is a 25 weeks old baby... and a 1 week old baby. Wrap your head around that one!

She is still fighting like crazy and it still breaks our heart to see her having to fight so hard.

We could't do this without all of your prayers and love and support.

I'm sure you've got other people on your minds and prayer lists, but we still wouldn't mind a few being sent up on our behalf.

-Love Adam, Lacey and Dalley

Merry Christmas from Dalley

 Merry Christmas from Dalley!

I was released from the hospital yesterday afternoon. It was an unsettling and familiar feeling that took us back to a year ago. I went into the hospital pregnant. I came out of the hospital no longer pregnant.  Leaving the hospital without our baby felt like a loss... again. We sobbed. We kept chanting to ourselves through broken tears, "She's okay. She's still here..... She's okay. She's still here."

We drove back home for the evening to do laundry and pack the items we would need for our stay at the Ronald McDonald house in Salt Lake City.

I called the hospital 4 times throughout the night to make sure she was okay. Each time I was convinced I was going to get some devastating news. Each time I was wrong. I hope this continues to be the case.

We arrived at the Ronald McDonald house this morning and got settled in. This place is amazing. Rooms are provided. Food is provided. We have been blown away at people's generosity.

We spent most of the afternoon and evening with our little girl. What a great day it has been!

We each got to hold her! I use the word "hold" loosely... in the fact that she was placed in our open hands long enough to take a picture and then immediately put back down. But those few seconds opened up a piece of our hearts and I know it is a moment that neither of us will forget.

(I have a picture of me holding her as well, but she isn't wearing a diaper and I didn't want to expose her lady bits on the world wide web. She'll thank me for that later I'm sure.)

The nurse also helped Dalley give us a little Christmas present. I put a quarter up there for size reference.

We also took some pictures with some of the Christmas presents that she was given.

Adam said, "She's as small as the elephant!" and then started laughing at the irony of the statement. 

Today was a good day. Her nurse today told us what a good day it was today. She also said that she is doing as well as anyone could expect from a 24 week old baby.

She also assured me that the hard days are coming. That there will be days when the outcome looks pretty grim. But to hold on to and enjoy the good days when they are here.

I remembered today the feeling I got when I first saw her. How much it scared me. How certain I was that she wasn't going to make it and in a way I was subconsciously trying to hold back my love for her. I think it was in self preservation. But my ability to hold any of that back has been destroyed by this deceivingly powerful tiny human. She has our whole hearts and we will shower her with all the love we have to give.

Merry Christmas from our family to yours. I'm grateful for another tiny baby that was born many years ago. I'm asking for his help as we endure this journey with our Christmas miracle.

-Love Adam, Lacey and Dalley.

Dalley stats as of December 25, 2016:

-Head circumference: 28 cm
-Stomach circumference: 15 cm
-Length: 28.5 cm (11.2 in)
-Weight: 500 g (1.1 lb)

Some Firsts

Unless you've experienced it for yourself, I don't think anything can prepare you for the emotion that hits you when you walk into the newborn ICU and see your tiny baby completely covered in cords and wires. Every time we check in to see her, I have to prepare myself mentally for it. It becomes an immediate mind game with myself. Which voice is going to win this time? The voice that sees a sick little micro preemie, or the voice that sees a feisty little warrior that is going to beat all of the odds? 

To be completely honest, each voice has won it's fair share of mental battles. 

We've experienced a few firsts with Dalley over the past few days. .....

1. I got to touch her for the first time. I got to hold her tiny little foot in my hand. I never knew I could be so happy to hold a foot. I also didn't know that holding a foot could make a person weep. Oh how I love that tiny foot with abnormally long toes. 

2. Adam got to touch her for the first time as well. He got to touch her head. He is usually the calm and steady one in the NICU but I could see his hand tremble a little when their skin first met. I love how much he loves her. 

3. We took our first family photo. :) 

4. Dalley received her first blood transfusion today. From what I have been told, this is pretty typical in a 24 week baby. They are constantly measuring her hematocrit level in her blood to make sure she has adequate amounts of red blood cells in her blood (Red blood cells carry oxygen to various parts of her body. Oxygen is essential for growth and nutrition to her body). Because she is so small, her body is not producing very many new red blood cells. Every time a blood sample is taken for a lab, her body is not able to replace it fast enough, so they gave her a blood transfusion to make sure she has adequate amounts of red blood cells. Because she is as young as she is, she is highly susceptible to bleeding on her brain, We won't know until Monday when they perform an ultrasound on her brain to see if there is any internal bleeding. Right now, the doctors and nurses don't suspect that she has any internal bleeding, but we can't rule it out for sure until Monday. So.... until Monday, just know that I am a nervous wreck.

All I want for Christmas is a bleed-free scan.  

There are several moments throughout the day that I start to feel completely overwhelmed and I honestly question myself and wonder if I can get through this. Every day is SO... INCREDIBLY..... HARD......! I start to think about time, about the future, and think, "I barely made it through today, how can I make it through several months?" 

But then  I look at our tiny little baby. She is resilient. She is feisty. She is a fighter. She is battling every single day just to make it to the next and that's all I can ask of her. And I realized today, that's all we can ask of ourselves as well.  One day at a time. One hurdle at a time. One victory at a time. If Dalley can do it, so can we. 

I've been assured that there will be many hard days in the future as a NICU parent. There will be bumps in the road and days when we feel like we can't go on. I wonder how I will cope with everything when Adam is back in school full time and isn't there every single day to calm me down. I also wonder how he will be able to maintain his busy school schedule with such a heavy load in his personal life. But we will keep up this fight for her.  Just like her, we will take it one day and one hurdle at a time. 

We have never been more determined to come out victorious as we have with this. We have to believe that she will continue to surprise us. We will be there for her. We thank you for being there for us.  

She's here.

It was a moment I have never experienced before. The moment I first saw her and was afraid of how much I loved her. Afraid to love her because I am so terrified she is going to get ripped from my grasp. What would that do to me? What would that do to us? Would we be able to bounce back from it if this didn't last? I honestly think it might break me.

Tuesday, December 20 started out pretty good. Monday had been a rough day as far as morale was concerned, but I was bound and determined to make Tuesday better. I had no reason to believe this little baby wasn't going to keep cooking for several more weeks. The visit with the doctor on Monday night went well. She had passed her daily BPP ultrasound (an ultrasound performed to make sure baby isn't in any stress and is in an adequate environment and growing sufficiently), my blood pressure was stable and I had felt her move quite a bit during the day. I was feeling good.

All morning Tuesday I was riding high on that feeling I went to bed with on Monday. I was hell bent and determined on thinking positively and hanging onto the hope I still had. But I was nervous. I hadn't really felt her move very much during the day. Maybe she was napping?

We got called in for our daily BPP ultrasound and I went into it fully expecting her to pass. Why wouldn't she? She had just passed Monday's test with flying colors. The ultrasound is given a 30 minute window and in that 30 minute time frame, the baby is supposed to attempt to breath and also have adequate movement. Our baby did neither. We sat there and looked at the screen and with each passing minute I felt the worry rising inside of me.  She just layed there perfectly still. I begged her to move. I poked my belly. They put a buzzer on my belly to stimulate her. Nothing worked. She just remained perfectly still with a heart rate that was slower today than it was yesterday.

The technician left us in the room to call our doctor to find out what they wanted to do and we just broke down. Pleading to whoever or whatever might be listening. "Please don't take her too. Not again. Please... please.... Not again."

The technician came back in the room and said she had spoken to our doctor (who was in Jackson Hole seeing their high risk patients), and he wanted to admit us in to labor and delivery for continuous monitoring. He sent me a text telling me that he was on his way back to Salt lake and that his colleague, Dr. Andres, (whose opinion he values very much) would be in to assess our situation.

We slowly walked ourselves over to the labor and delivery section of the hospital with our heads low with sorrow. Walking past rooms full of mothers waiting to give birth to their perfectly healthy and full term babies. Hearing babies cry and eat and people gush over how perfect they were. Seeing mothers get wheeled out in a wheelchair to be taken home while the fathers beamed with pride as they held their new baby in their car seat. Wanting to be happy for them but at the same time, feeling like an earth sized hole is going to be left in my heart for what I could lose. How could this possibly be happening again? We just didn't understand. She was fine. Yesterday.... She was fine! And yet...one day later, there I was.... in my mind trying to pick out which song I would sing at her funeral if she didn't make it.

I was immediately hooked up to a monitor so they could continuously monitor my baby's heart rate. Her baseline heart rate was still within the "normal" range for a 24 week baby (120-160 bpm) but it was a lot lower than what it had been the day before.  After the tests ran for about an hour, Dr Andres came in with Dr. Jenkins to give us the prognosis. Our baby wasn't doing well. In a nut shell, the placenta was insufficient and she was slowly dying. It seemed as if it was a matter of when at this point and it was up to us if we wanted to deliver her now and give her a fighting chance in the NICU or try to prolong it a few more days and risk her dying in my uterus and giving birth to a stillborn baby. The choice was ours.

Dr. Andres and Dr. Jenkins were able to reach my doctor, who was in an out of service driving back from Jackson, and my doctor agreed with the prognosis but said he would like to keep me on the monitors and repeat the BPP ultrasound around midnight. Dr. Andres sent the neonatologists into our room to give us the information regarding the NICU and how the events would transpire once our baby was handed off to them. This is when it happened. I thought we had a few more hours to process things. ..... but I was mistaken.

As the neonatologist was sitting there talking to us, we could sense an urgency in the room amongst the nurses and the resident that was on duty. They couldn't find our baby's heart beat anymore.... but there! They found it! But it had dropped down to 80 bpm. It was so low that they had mistaken it for mine. It was happening. Our baby's heart was slowly stopping right before our eyes. They called Dr. Jenkins in the room and the decision was made to rush me into an emergency c-section.

An oxygen bag was placed over my face as people were running around in an organized chaos. They knew what they had to do. I knew what I had to do. Just breath. Slow and deep. Slow and deep. They wheeled me away from my husband. My strong and capable husband who was managing to say through tears, "Please save my baby. Please take care of my girls."

I was sent to an operating room and within a few short minutes of prep, I hear someone say, "We are ready to cut", and my world went dark and I fell asleep.

Dalley Raye Garfield was born at 5:03 PM. She weighed 1 lb 2 oz. She was approximately 11.5 inches long. She is perfect and tough.

I had awoken from the surgery and Adam was there to tell me everything was okay. As of that moment, our baby girl was doing okay. She was tiny and the smallest baby in the NICU but she was and is a fighter and she is in the most capable hands.

As of that moment the count changes. She was no longer weeks old in the womb, but she was born and as of today she became one day old. She is our tiny miracle and fighting like crazy.

It was very hard for me to see her today. I can't hold her yet. I can't touch her. I can't feed her or sing to her while I rock her. She can't see me because her eyes are still fused shut. They have somebody watching her 24 hours a day and running tests on her and making sure her blood pressures and blood sugars are stable. I am so afraid of the power that this tiny person has over me and us, but I guess this is being a mother and a father. It's  no longer about us. It's all about her.

She is one day old. We have so many things to be grateful for today. We're grateful we made it to 24 weeks and 0 days before she had to be born. Her chance of survival goes up from the 30-50% range to 90%. We're grateful that we were on the monitors when her heart rate started to dip so that we could get into surgery immediately. We're grateful for the highly educated individuals that have and will be part of our journey here. We're grateful for my family who came to be with us, despite me telling them not to come. We're grateful for the texts and calls we have gotten from people to wish us well and tell us they are with us and support us through this. We're grateful for the donations and gifts people have sent to brighten our spirits and lighten our financial burden. You have no idea how much you mean to us and how much you ease the pain by caring. The world is full of so much love.

This is going to be a long hard road. We have cried many tears together already and I'm sure we haven't cried our last. I'm reassured there will be good days and bad days. I know those hard days will be made lighter by your continued love, support and prayers. We are still hoping and praying for a miracle and that when all is said and done, we will get to take home our beautiful baby girl.

Please keep the prayers and positives vibes coming. We need you now more than ever.

-Adam and Lacey

Ups and Downs

Today has been a weird day. Ever since Friday I have felt so positive and hopeful that we are going to get several more weeks into this pregnancy and let this little one grow a little more, but today that feeling of hope has been harder to find.

I can't really explain why either. Maybe it was because my blood pressure has been on the cusp of my 160/110 parameters for days.... or maybe it's because in my daily BPP ultrasound they weren't able to see her practice breathing..... or maybe because the first ultrasound wasn't enough and they made me go back for a second, which immediately instilled in my mind a reason to panic..... maybe it's because I woke up emotional because today marks the seven year anniversary of my dad unexpectedly passing away. For whatever the reason, I have been unable to shake this feeling of pending doom and despair.

Tomorrow marks a 24 week gestation. This is considered a viable pregnancy in most hospitals (even though the University of Utah can intervene at 23 weeks). This makes me feel so excited and nervous at the same time.  When you make it past the 23 week gestation point to the 24 week gestation point, the likelihood of survival increases immensely. But I also know the 24-28 week window is the scariest time for a baby to be born because so many complications can be present due to an underdeveloped baby. I hear so many amazing stores from people... who know people...who know a person, who had a baby at 25 weeks, or 27 weeks or 30 weeks.... and that baby is doing awesome. These stories are everywhere and people tell them to me and I am so very grateful that they do. But somehow my catastrophic mind can hear these stories and yet still think, "maybe for them, but maybe not for me."

Some days I am able to combat my catastrophic mind with contradictory positive thoughts. Today has not been that day.

The doctor just came in to tell me that everything is still holding stable and my self diagnosis of SEVERE preeclampsia and a 24 hour pending delivery were incorrect. I didn't realize just how much I was holding in today, because with those few words, tears of temporary relief just came gushing. We've made it one more day. We've made it one more week. This is a victory I am going to let myself celebrate.

Laying in my hospital bed all day it was impossible not to think about my dad. It's hard to believe that it's been seven years since I have had a conversation with the man I admire most. Days like today I wish I had a fraction of his indescribable strength and grit. He could and did weather any storm that life blew his way. He did it without a word of malice, anger or regret. Never once did I hear him complain that life had been unfair to him. He lived his American dream and he loved the people in his world fiercely.

I miss him more than I can say. I remember getting that phone call telling me that he had unexpectedly passed away and I knew my life was never going to be the same. I knew that I was going to have to dig down deep and find a strength inside myself that did not exist at the time. Similar moment of realization have come to me in other times of trial, and this one is no different.

It's time for me to channel my inner Todd Gilbert, and strap on my boots. This trail we are currently on is going to get a lot rougher before we see the light at the end of it. But tomorrow is a new day and with that new day will come new resolve and strength.

Thank you for the continued support and prayers.

Happy Trails.