Obsessed

"Block with the left... jab with the right."  -Dalley

I am obsessed with this baby. I stare at her all the time.

She has had several good days in a row. .... besides the fact that she is not gaining weight, but has been losing weight. This is mostly because she was given a lot of fluids while she was on her antibiotics, and she is now just starting to pee off all of the excess fluids. One of her favorite past times is peeing through her diaper so the nurses have to change all of the bedding. She thinks it's hilarious. She has also had several FULL diapers. I LOVE when she has a full diaper. I never thought stool could bring such happiness.

She was taken off food when they thought she had a stomach infection. Now that they have ruled out a stomach infection, she is back up to full feeds of 14 mL. They are fortifying the caloric amoun from 22 calories to 24 calories. Hopefully the fortification will help her gain weight but will not cause an excess in gas production and give us another NEC scare.

One of our primary nurses, Jane, getting her nightly weight.

Last night she weighed 850 grams (1 lb 14 ounces). Today she only weighed 810 grams (1 lb 13 oz). Now that she's feeling better, I hope she starts gaining weight. She clearly has her dad's metabolism, instead of her mom's.

I've started to notice a few things with Dalley. Her dark hair is turning blonde and I think I saw some curls. I think she is getting big and mature enough that she is more aware of things that bug her. She is constantly trying to spit out the tubes going down her throat. She gets antsy when she's hungry. She also seems to hate when she has to lay in the same position for too long. She still doesn't like being swaddled. And she still sleeps with her hands all over the place. I think she's going to be a free spirit.

"You're letting the light in..." - Dalley

Yesterday when Jane was changing the bedding on her bed, I got to hold her for a brief moment. I cannot wait until holding her is second nature to me. When I can just pick her up and hold her close to me. That will be a day I will never forget.

It's amazing to me how much power this tiny little girl has over us. 

She has left her footprint permanently on our hearts. 

Enjoying the Moment

In my life, I have developed a terrible habit of being unable to relish life's blissful moments. Even on some of the happiest days of my life, I always have in the back of my mind a cautionary voice telling me that the joy of this moment will not last.... so be prepared for when it ends. I don't like this characteristic of myself.

The day Adam and I got married, my mom was laying in our house dying of cancer and passed away 3 days later. The day we found out we were pregnant with triplets, I was so afraid of the risks that I couldn't enjoy the moment. The day we found out we were pregnant with Dalley, I was overjoyed for a few minutes before realizing the heightened risk I had of developing preeclampsia again. I never really let myself get excited for fear of having to bury another baby. We tried to remain cautiously optimistic but I still have never allowed myself to buy a single baby item for fear that we would have to take stuff back like we did when we lost the triplets. It was too crushing. As much as I hate this characteristic about myself, I feel like it's a form of self preservation. Don't let yourself get to high in excitement because the fall hurts a lot less if it doesn't work out. 

Today was a good day.... and that side of me did not win. It was a good day and I let myself bask in the calm. I'm not naive enough to think we won't have any more bad days... but I let myself enjoy today.

This was Dalley on the day she was born. I remember after I had awoken from the c-section surgery, I asked Adam if she was alive. After he told me that she was, I felt as though I wanted to be happy but I had the same apprehensions. Don't get too happy. Don't get to high. The fall will hurt. 

Every day we would come into the NICU to see her, and I would just stare at her with eyes full of tears and a heart that was so broken and afraid. I was starving for any kind of hope that she was going to be okay. I would ask the nurses constantly for reassurance. I just wanted one person to tell me, "she's going to be fine. You are going to take your baby home." But no one ever did. They never could. They still can't. All they can say to me is, "We are going to do everything we can." 

Here we are 5 weeks later and it is a good day. Today was the first time we have reduced the settings on her Jet ventilator. We have only had to go up on settings to increase the support. Today we went down and she is still able to saturate on her oxygen. Today was also the last day of her antibiotic for the pneumonia. The other blood infection that they thought she had turned out to be a contaminated blood sample. The second sample did not grow anything. And she finally had a full diaper which made her tummy look a lot less scary. 

Normally, I don't think I would have let myself enjoy today in preparation for the next bad day. But I feel like I can begin to taste the hope that I was so thirsty for in the first few weeks. 

She is maturing and filling out. She now weighs 860 grams (1 lb 14 ounces). Only 50+ more grams and she's a 2 pound baby! 

I am going to do my best to let myself try to enjoy these good days as they come, because she deserves that. 

She deserves all of the Faith that we can muster. She gives us Hope. And the Charity, or love we feel for her is something that will drive us forward on the days when it feels completely impossible. 

I guess it's only appropriate that she has 3 big sisters, Faith, Hope and Charity as guardian angels to help her and us along. I'm sure they keep her company more than we know. I know those babies are a powerful force for Dalley.  

Life is so beautifully challenging. We're doing our best to live in the glorious moments when they come. 

Goodnight kisses from Dalley.

Longing for Boring Days

My friends Levi and Lindsay brought me a burrito from Cafe Rio. A few bites in, I had the realization that the burrito was in fact BIGGER than Dalley. It also weighed a lot more too.

Today I feel tired. I feel so exhausted from being stressed, scared and worried for the majority of my days. I long for boring days in the NICU when there's nothing to report besides resting and growing.

Monday morning I got a call from the NICU. It's not usually good when I get a call from the NICU before I've even had a chance to get up there for the day. The NNP (Neonatal Nurse Practitioner) that was looking after Dalley for the day was concerned about another infection that could potentially be presenting in her stomach or intestines. Her abdomen is abnormally distended and when they push on it, it was causing her some pain. These are some first signs of an infection called Necrotizing enterocolitis or NEC for short. I don't know much about NEC, other than it is common in really tiny preemies, that it is an infection in the wall of the intestines, and that I met a mom who had a baby die from the infection.

The words from the NNP saying that they were worried it could lead to that had me racing in my car all the way up to the NICU. Why does the world seem to be driving like they are on a leisure drive through the mountains on a Sunday afternoon, when I am trying to get to the hospital in a hurry?

I enter the NICU and I'm immediately greeting by the Neonatologist to tell me they are very concerned with her belly. They had completely stopped all feedings, put her back on the TPN fluid, and put another large tube down her throat and into her stomach. This tube was hooked up to a device that was sucking all air and fluid out of her stomach. The goal was to put her digestive system completely at rest.

I felt the tears starting to burn my eyes. How many times can I beg and plead for a miracle? How much more can Dalley take? I know she's tough, but none of us are invincible.

When I went to see her they were taking blood samples from her PIC line and from another site. They sent them off to be cultured to make sure the infection hadn't once again entered her blood stream. I looked in at her and saw her gagging on the giant tube that had been put down her throat. Sometimes I feel like such a coward when I have to walk away and bawl during these moments. I cannot watch her suffer. I wish I was stronger. I wish I could sit next to her bedside and tell her it's going to be okay.  But All I could make out to her was a whisper of, "I'm so sorry. This just isn't fair."

Fast forward to today......

They are starting to rule out an "infection" of her gut. But the size of her stomach is still concerning to them so they will continue to watch it vigilantly. The poor little girl just needs to poop. It's amazing to me how victorious a full diaper is to me.

Tonight I was also told that one of the blood cultures that was taken yesterday is growing positive for another infection. It came from the PIC line location again. I hate that the PIC line is necessary for medication delivery. It's a double edged sword. The site that is feeding the body the life saving drug... is getting infected. The other blood culture hasn't grown anything yet so they are "hoping" that it was a contaminated sample. If her blood were truly growing an infection then both cultures would be growing the same thing. Another sample was taken from the PIC location again today and if it tests positive then we will know we have yet another infection on our hands.

I just want her to have a break.

"Kicking these infections butts!" 

One of our primary nurses and one of our favorite nurses, Jane, is on watch tonight. She can seem to make miracles happen for our little Dalley girl. Fingers crossed that tonight is no different.

Good night from our worn out family to yours.

Pneumonia

They said that our time in the NICU would be a "roller coaster ride"..... and right "they" were.

Dalley now has pneumonia. A few days ago (January 19) her stats started becoming a bit unstable again. She was showing a scary resemblance to the last time she got an infection. She had an increased heart rate, temperature instability and a higher requirement from the ventilator for gas exchange in her lungs.

They pulled blood cultures and cultured the aspirate from her trachea and the trachea tested positive for an infection.

She was immediately given another PIC line and started on another round of antibiotics.

My little buddha belly baby getting ready for her third PIC line.

It breaks my heart to think about how much pain this tiny person has already had to endure in her short life. Most babies her age are still safely tucked away in their mother's womb. No requirement put on their lungs to breathe or on their digestive system to digest milk. Her tiny little body is being asked too much and the result is an insufficient immune system that is very susceptible to illness. 

But like every battle she's been forced to fight, she seems to be winning. Her body seems to be responding to the medication and the doctors and nurses luckily caught this infection before it entered her blood stream. In the NICU world, a blood infection (which she had last time), is much worse than a lung infection. 

Yesterday and today she was stable enough that we got to have "modified" skin to skin time. They pulled down the walls of her isolette and I was able to wrap my hands around her body. My small hands completely cover her. 

I was able to contain her for about 20 minutes and in that time I sang to her some of my favorite songs. I sang "You are my Sunshine", because that's what my mom used to sing to me when I was a baby. I sang "Someone like You", because that was one of my favorite songs my grandma Gilbert used to sing. I sang "The Rose", because that's my favorite song of all time. Lastly, I sang to her "The River", by Garth Brooks, because to me it's about the journey of life. .... and hers is just beginning.

Like the rest of us, she is going to have a lifetime of incredibly happy and great times, but also a lifetime of incredibly painful, difficult and trying times. It will be in those moments of anguish that I will remind her of her strength. She is fighting harder than most of us had to just for a chance to exist. Her struggle is hard to watch, but inspiring me at the same time. I will always remind her of the fight she put up to be here and remind her that there isn't anything in this life that she cannot do. 

Rocky Pose!!!!!!

Victory is on the horizon. 

4 Weeks Old

Who Turned 4 weeks old today????????

Her likes include:

-Sleeping on her belly

-Putting her hands up by her head.

-Reading books and being sang to

-An occasional binky

Her dislikes include:

-Tubes down her throat

-Sleeping on her left side

-Noisy babies/roomates

-When you lift the blanket and let in light while she's trying to sleep

I don't know when most people start counting "the months".  I think I might be 3 days early because she was born on the 20th, but today still feels like a day to celebrate. 

4 weeks old. We've survived this for almost a month now. 

It's strange to think that Dalley has been alive for 4 weeks, yet if I were still pregnant I would only be 28 weeks along. 

 She was 510 grams (1 lb 2 ounces) the day she was born and today she weighed in at 730 grams (1 lb 10 ounces). 

She keeps having some issues with her oxygen saturation that they believe are being caused by the PDA in her heart. They don't think it's causing a big enough issue to do anything about it right now but they continue to watch her closely. Her kidneys are also immature so her urine output has been insufficient. They have her on a mild steroid to help with urine output. 

Every drive up to the hospital and every step I take into the hospital is filled with intense anxiety. I wonder what catastrophic scenario is going to be unfolding in front of me when I walk into her room. However, the only scene that has ever been there to greet me is this tiny little warrior that is fighting like hell to make it through another day.

It almost seems like an oxymoron that one of the strongest people I know is my 1 pound baby, but it is the absolute truth. It is something I will remind her of every day for the rest of my and her life. She is going to conquer this life one battle at a time. That's what every day feels like right now. At the end of every night we fall into bed weary because it has been an exhausting victory. 

Good night from our weary warrior. 

24 Days Old

Something unexpected happened to me this week. Most days when I walk into the NICU and look into the isolette where Dalley is, I either break down into tears or fight them off. It's never been easy to see my tiny baby in that condition. I image even years from now I will look back at pictures of this time and it will still be difficult to remember. But on Tuesday, I walked into the NICU and this is what Dalley looked like and when I saw her, I smiled. No tears. Just a smile that was quickly followed with some baby talk as I questioned her about how her day was going. It was one of the first times that she looked like my baby and not like a NICU patient. My tiny little pink burrito. This kid has my heart.

This week has been euphorically boring.  Her oxygen saturation has been relatively stable. She finished her 10 day antibiotic treatment today with no signs of any further infection. Her PIC line was also removed today. They have been steadily increasing her food volume and have even been fortifying it with additional calories to help with growth. She was moved from room 1 (critical care) to room 2 (very low birthweight center). She has even sucked on a pacifier a few times.

She's also starting to show little bits of her personality. When she sleeps, she likes her hands to be either touching her face or her head. Even when the nurses swaddle her, it's usually only a few minutes before she has one or both hands free and raised up to her head. I obsessively take pictures of every new pose because every position is so darn cute.

Drama Queen

"No more pictures please!"

She also hates being bothered. She'll give you the one-eyed pirate scowl when you raise the blanket and let light in while she's trying to sleep. She also doesn't like noise. Looks like she takes after me in more ways than her abnormally long monkey toes.

I can't believe we've made it 24 days. She's almost 4 weeks old! We have also officially made it through 2 weeks of Adam being back in school. I know it's really hard for him to be away from us during the week. He says that it's taking a lot more effort for him to try to focus on school with everything that is going on.... but he's doing it. He misses his girls... and we miss him too. I haven't looked forward to Friday nights with this much anticipation in years.... because this is what I get to see....

Normally I love winter. .... but I wish it were May already. 

Dalley agrees. 

We love you all and thank you for your continued love and support. 

A Good Day

Today has been a good day. One of the better days we've had in a while. There is a direct correlation that exists between the kind of day Dalley has and the kind of day Adam and I have. When she has a good day....we have a good day. I have a feeling this is just parenthood. I don't expect this phenomenon to leave anytime soon.

We finally have control of the infection. We got 3 days in a row of "no growth" on the blood cultures and they have started to wean her off the nitric oxide gas. Despite the weaning of the nitric oxide... she has still been able to maintain her oxygen saturations without as much help from the ventilator. She should be completely off the nitric oxide by tomorrow afternoon and they are not anticipating any problems. ... Fingers crossed. She did so good today.

They also performed an echocardiogram on her heart today. The scan did show that she has a PDA (patent ductus arteriosus)... I had to google this.....but this is something they expect in any baby as small as she is. Right now they are not worried about it. Sometimes it's an issue that fixes itself, sometimes they give medication or there is a surgery that can fix it as well. As of right now, she is so small that it is just something that they are going to keep an eye on. Other than the PDA, the scan showed no other abnormalities.

They've started swaddling her in a little pink bandana. I think she likes the security that it provides, except she always wiggles out one or both of her hands. I love that we're starting to see little parts of her personality... I also love that the swaddle makes her look like a burrito. I've actually seen a burrito that is bigger than she is in her swaddle.

My sister is in town to spend the week with me. We've lovingly referring to it as being on "crazy control". :)  We went to the bookstore and she bought Dalley some new books. We spent the day reading them to her.

I love that she's here. My family is close. We've always been close, but the bond became even stronger and more necessary when our parents died. They get me. I have laughed more today than I have in a long time. It was good for my soul.

We all needed this day. Today was a win. Tomorrow marks Dalley's 3 week birthday or 27 week gestation time period. 3 weeks ago I didn't know if we'd make it to this point. I know the road ahead is still long, but we can handle long... as long as the result is her coming home with us.

"Everything is okay." -Dalley Raye Garfield

Thank you for the continued love and support.

The Truth

The truth. That's what I started this blog for. I promised myself I wouldn't sugar coat anything. I was never going to pretend to be stronger than I am. I was never going to lie to myself or anyone else about how "strong" or "put together" or "resilient" we are, or to tell everyone that "everything is fine", when in reality it's not. I think that does more damage than good. The truth is, I think we're all entitled to a break down at some point. We're all entitled to a bad day. We're all allowed to feel despair. I think the challenge is to not let those emotions take command of our plane. The crushing moment happens..... we feel pain.... we feel sad.....we feel angry, but in due time, we let ourselves rise above and allow the hope to creep back in.

It has not been a week full of "hope creeping back in" days.

The days have been full of so much "bad news", "set backs" and "what-ifs", that at one point I found myself sobbing in a bathroom so uncontrollably that I felt my knees buckle beneath me. The only thing to keep me standing upright was my sister-in-law Lisa, wrapping her arms around me and holding me up.

The infection has been a lot harder to kill than we thought and it has caused a lot more problems than I ever thought possible.

All day Wednesday Dalley was having a hard time keeping her oxygen saturations up. Whenever her oxygen levels drop below 85% saturation, an alarm starts going off on her machine. When this happens, the nurse just increases the amount on the ventilator. However... this didn't happen on Wednesday night. I was sitting by her bed and kept watching her oxygen saturation fall. The nurse would get up and increase the settings on the machine. But with every change in the machine, her oxygen still kept falling. Finally the machine was up to 100% and her oxygen was still dropping. Past 70... past 60... past 50.....  past 40. WHAT WAS HAPPENING!?!?

I stared at the monitor and then back at the panicked nurse. I could not just watch this happen. I stood up and paced the room as additional nurses, Neonatal Nurse Practitioners, respiratory therapists, Neonatologist, Fellow's all came rushing to her bed. She started to turn color from a nice healthy pink, to a pale white... almost blue.

I walked into the hall and called Adam. I just cried. He knew immediately that something was wrong and it instantly sparked an emotional response from him as well.

"Is she okay? Is everything okay? Lacey.... is she okay?"

"I don't know. I'm scared. You need to come be with us."

He immediately got in the car and started driving while I just leaned against the wall and slithered to the floor. It felt like I was there forever. I didn't have the courage to go be with her. I wasn't sure if I was strong enough to see what was happening. I was frozen with terror.

It felt like an hour, but in reality it was probably a few minutes before the Neonatologist, Dr Yost came and sat by me on the floor. I asked him if it was bad. He shook his head and said no. I asked him if Adam needed to come to be with us. He said, "we're not there yet."

YET!!!??????  I still felt pending doom. A nurse took me into the consultation room where I waited for news while Adam drove. It wasn't long before a Neonatologist fellow came in the room to tell me that she was stable again.

They had completed an x-ray really quickly and saw that her lungs were almost completely collapsed. The infection had caused an inflammatory response in her and all of the fluid and white blood cells had settled in her lungs. There was hardly any gas exchange going on.

They quickly increased the settings on the ventilator and expanded her lungs again and started her on nitric oxide. It worked. Her numbers became stable again and she started to turn a nice healthy pink. I called Adam and told him the crisis was over. He turned back around and we just cried on the phone the rest of his drive back.

That was Wednesday night and the past two days have been damage control. ......For both Dalley and myself. She is still requiring a lot more from the ventilator and I am realizing that this might be bigger than me right now. I realize that we might need a lot more help to get through this than we thought.

Today has been a better day. I've had some really amazing people stay by my side the past few days to make sure that I would be okay until Adam got here. I asked my sister to take a week off work to be with me next week. She agreed without question. Adam's classmates have been so supportive and kind. They started a meal calendar for people to bring him meals to make sure that he is eating.. even though he initially denied the service. Thank you.

The truth is.... we all need a little extra help every once in a while. Dalley is needing extra help from the ventilators while she kicks this infection. Adam and I may need a little extra help to get through these humps as well. ... and I think that's okay.

"I WILL CONQUER!" - Dalley Raye Garfield

I took this picture of Dalley today. It perfectly sums up our week. We came out victorious..... but not without our battle wounds.

Daddy's Girl.

I might be biased but I think Dalley looks so beautiful in this picture. I think it's the fact that her eyes are open and she doesn't look as sick as she usually does in pictures.

Dalley had a few set backs today on her ventilator. She was having a hard time keeping her oxygen saturation levels up and after getting a chest x-ray completed, it was discovered that her lungs had collapsed. They had to amp up the settings on the ventilator to get her numbers back to where they need to be. Another bump in the road.

Today was the first day of our "new normal". Adam is living down in Springville because he started class again this afternoon. I am living in Salt Lake at the Ronald McDonald house. He will be coming up to see us on Friday and stay for the weekend.

I am already feeling his absence quite profoundly. I spent 20 minutes trying to find my car keys when I was leaving the hospital. I tore apart every bag I had with me and retraced my steps throughout the NICU 15 times before I remembered I had used the valet parking service.... and they had my keys.

Dalley and I miss our dad and husband. We knew today would be hard. Which is why yesterday, Adam was allowed to do "kangaroo care" or "skin to skin" with Dalley. I was still trying to decide if I had a cold or not, so I opted to let Adam hold her. It was honestly ALMOST as emotional and rewarding for me to watch him hold her as it was for me to hold her myself.

She is going to be switched over to a new ventilator in 2 days, and that ventilator has a short hose so we can't hold her when she is on it. I'm so happy that he got a chance to hold her before he left today and before she gets switched over.

It just about melts your heart to see crocodile tears running down your husbands face as he holds his baby for the first time.

I tried to capture the moment the best that I could. It takes so much work and several people to be able to move her out of her isolette and into our arms.

The respiratory therapist and the nurse have to work together to make sure the hoses aren't kinked and that they don't move at all in her airway.

I think it's safe to say that dad is wrapped around her tiny tiny fingers.

She did so well doing skin to skin with her dad. Her numbers were equally stable as they were when she was with me.

I can't wait to watch their relationship grow. There is something about a little girl's relationship with her dad. And I think this little girl has got the best dad around.

I catch him staring at pictures of her on his phone.

He sits and reads books to her.

And he leaves her mom reminder notes on the door because I'm a space case.. and he is abnormally organized. (Notice that 'keys' is on the list of things I habitually forget... :) )


I've cried a thousand tears today. I hate seeing my baby the way she is. I miss Adam. I miss my mom. Moments like this I really, really wish my mom were alive to come be with me.

This is our new normal.... for now. Not forever. But for now.

And we can do this.