NICU Day 6 {Heaven on Earth, Lab Changes}

Day 6 was truly a day that Heaven came to earth. I got to hold a literal angel in my arms for the first time... our angel! 

Before I get into that incredible story, let me start from the beginning of the day... It started out a little rough. Remember when I mentioned previously that the routine head ultrasounds for babies born at her gestational age was at 5 days? Well she turned 5 days old on Christmas day. Since they had gotten that head ultrasound to ease my mind just 3 days earlier, they decided to wait and get the routine scan on the morning of the 26th. I didn't sleep that night, worrying about the results, even though she had a clear head ultrasound just 3 days prior. Anything could have happened in the last 3 days. I asked the nurse to let me know as soon as she had the results. She kept me updated via text throughout the night.

At 1:30 a.m. she let me know that they had gotten in to do cares and did her weight. She weighed 396 grams... 13.9 oz. She had lost weight as expected. I didn't panic at that point because the rest of her update was positive. She was stable on her oxygen and her blood gasses, most of her labs and other vital signs had remained stable. There was one change that did catch my attention and made me extremely nervous- a shift in her I:T ratio- which could mean one of two things;

1. Residual effects on Paige's bone marrow from my preeclampsia

2. Infection

I was so worried about the I:T ratio, that I didn't even notice that the nurse had texted back that Paige's head ultrasound had resulted and that it was all clear! I was elated, but in the back of my mind I couldn't stop thinking about that lab result. The Nurse reassured me that for the time being, they weren't super concerned about infection. Paige's temperature was normal and all other vital signs were looking great. I just couldn't shake the feeling of worry though.

When I got to the hospital the morning of December 26th, I was exhausted and in tears after worrying all night about her lab results. I asked the nurse if Paige's Doctor or Nurse Practitioner could come discuss the results with me. I explained my concerns and I asked them why they weren't digging a little more into why the I:T was shifted. I asked them why they weren't doing blood cultures or other tests to make sure she didn't have an infection. The nurse practitioner explained that when mom's have severe pre-eclampsia, the babies bone marrow production can be suppressed and as it's trying to catch up, the I:T can appear shifted. Even though I still felt deep down that something was wrong, I relented because well, I'm not the doctor or nurse practitioner and they obviously know more than me. If I could go back and fight it, I would do it in a heart beat. But more on that later.

Paige had been pretty stable that morning. So stable, in fact that they were talking about letting me hold her that evening! She had been under the bilirubin lights since the day she was born, and her levels had improved enough that they were able to turn those off. They also removed the arterial line going into her belly button. We couldn't hold her until that was removed because the line was in her umbilical artery, so we were so happy to have that out. 

I was terrified to hold her because I didn't want to hurt her, accidentally pull our her breathing tube, or take her out of the incubator and expose her to the cold air or any sicknesses floating around. But they reminded me that being close to her mom was the best thing for her. It could help her heal, improve her vital signs, and help her to feel more relaxed. So all that day I looked forward with so much anticipation to holding her that evening. I couldn't wait to have her back with me. I still wished so badly that she was still growing inside instead of going through what she was going through. 

The time finally came at about 8 o' clock that evening! Mike had taken the boys to a hot springs with my family, so I called him and told him to hurry down after they were done, so that he could be here when we took her out. 

When he arrived around 9 o' clock, the staff gathered into her room to help us get her out. It may seem pretty easy to get a 14 oz baby out of an incubator, but its no easy feat. They had to have 2 RT's and 2 RN's there to help us. In order to take her out, she needed to be wrapped in plastic to help preserve her body temperature, she also had to have a thermal hat on because babies loose most of their heat through their head. They had me pick her up while the RN's watched the IV lines, and and the RT's watch the breathing tube. They were also watching her vital signs to make sure she could handle the transfer. I remember picking her up and putting her on my chest and it literally felt like nothing was there, she was so teeny tiny. They pulled the reclining chair up to me and I slowly sat down, all the while holding her little body on my chest. The nurses and RT's helped get her and I situated into a comfortable position. They stuffed pillows under both arms and taped her tubes to my shoulders to hold them in place. Once we were settled and everyone left, I just cried. It felt so good to have my little girl back with me. All my worries disappeared and Mike and I just enjoyed the moment. I got to hold her for 3 hours and they were right, her oxygen sats improved and she relaxed more than she ever had. 

It took every thing I had to put her back and say goodbye for the night, but around midnight we had to get her back in. Babies that size need to be under humidity because of the fragility of their skin, so we were only able to hold her for 3 hours. I wanted more than ever to just keep her close. It was so hard to let her go. But I was so happy that I got to spend 3 hours holding our little girl and hopefully helping her feel safe, comforted and beyond loved. It's one of the most special memories I've ever had in my life.

NICU Day 5 {December 25th-Christmas Day}

The boys woke us up at 7a.m. on Christmas morning. I was absolutely exhausted and in an incredible amount of pain. I didn't want to take anything because I wanted to be able to drive down to the hospital later, so I toughed it out with ibuprofen. Once I was able to pump, get my pain under control and get myself out of bed, I made my way out to the living room so that we could open presents together.

I wanted to keep the morning as normal as possible for the boys because they were so excited. I tried to get a video of their reaction when they came down the hall like I always do, but the excitement just wasn't there for me. I felt like a piece of me was missing and I didn't want to celebrate. I wanted so badly for Paige to be back inside my tummy and it literally took every ounce of emotional strength that I had to not break down and cry.

I couldn't focus on opening presents and didn't really care about what was going on around me. I pretended to be excited so that the boys could enjoy the day, but I was dying inside. I remember it being difficult for me to lay there because I was so anxious. I was glued to my phone waiting for the next update from Paige's nurse. The anxiety was so emotionally draining. Not just that day, but for the next 30 days. On top of that I was in pain and physically exhausted as well.

After we finished opening gifts, the boys played and I attempted to get up to get myself dressed, but the exhaustion had caught up with me. I knew that I had to try to take care of myself so that I could be strong enough to be there for Paige and I knew that I wouldn't be in a good place mentally if I didn't sleep, so I attempted to nap. I felt okay sleeping for a bit after I received updates that Paige was stable.

At one point, they sent me a video. I opened it up and it was a video of her little left eye opening for the first time! I was SO excited! I jumped up at ran over to show Mike and the boys. To that point, her eye's had been fused, so for her eye to open on Christmas morning was the ultimate Christmas present. I couldn't wait to get down there to see it for myself!

At around 12:00 I was finally able to get myself ready to head down to the hospital. The boys were still busy playing. I wanted so badly to sit and watch them play with their toys, I just wanted Christmas to be normal... but it was anything but that. I was anxious and worried and I needed to be with Paige, but I felt like I needed to be with the boys too. The boys were always so sweet about me going to the hospital and didn't mind me leaving. They knew their baby sister needed someone there with her.

I drove down to the hospital and ran up to the NICU. I couldn't wait to see her and do her cares so that I could see her little eye open. When I arrived at her bedside, I got my update from the doctors and spent the morning holding her hand. As soon as it was time for cares, I had the nurse turn down the lights so that we had the best chance at seeing that perfect little eyeball. I gently woke her up, but being her stubborn self, she kept those eyes as tight as she could. I don't blame her one bit! After cares I sat by her side for the rest of the day and into the evening. 

My family was having Christmas dinner that night and I was feeling guilty for being away from my boys, so I headed over to my parents to eat real quick. Again, the anxiety was so overwhelming while I was away, I could barely function. After I finished eating, they begged me to sit down and open presents, but all I could think about was getting back to Paige. Opening gifts for her was like a literal punch in the gut and every gift was more painful than the next.. I was trying my hardest to stay positive, but knowing that there was a chance that she wouldn't ever get to wear the cute outfit or use the stuffed animal tore me apart. After we opened gifts, I sat down to pump before I headed out the door to go back to the hospital. 

Before I left the house, I had asked my dad, my brother Skylar and brother in law Jordan to come down to the hospital with us to help Mike give Paige a blessing. They willingly agreed and we all headed down. It was the first time they had gotten to see her and they were all amazed with her size and strength. They gathered around as I sat by her side and Mike gave our beautiful little girl the most peaceful blessing of rest and healing. After the blessing, we felt at peace. My dad and brother's stayed for a while and after they left, we spent the rest of the night quietly by Paige's side, talking to Paige's nurse. I was just so thankful that we made it through Christmas.

NICU day 4 {December 24th-Christmas Eve}

The morning of the 24th (Christmas Eve) was difficult to say the least. Christmas has always been my favorite holiday. I have never had anything but happy memories, and then our kids came along and made it 1000 times more exciting. I love the magic of it all and seeing their faces light up.

That day though... that day felt dark and sad, and to be honest, I didn't want to celebrate. I was still in utter disbelief that my life had been literally flipped upside down in what seemed like an instant. Just a week ago we had been so excited for the holiday's. Mike had just finished up his second to last semester of nursing school and we were both only working 2 days a week, so we had a lot of time off together while the boys were at school. We had gotten all of our Christmas shopping done and had wrapped everything 2 weeks early because I was supposed to work Christmas Eve and Christmas Day. The plan was that I would work Christmas Eve, Mike would put all of the gifts out that night and that I would come home and we would open presents together with the boys before I had to go back to sleep so that I could work that night. It was the first time I would have to work Christmas in 12 years of working in the medical field and I had been so sad. Looking back though, I just want to kick myself, because I would have given anything to be at work with her still growing inside of me, instead of where we were.

The nurses made Paige a little footprint card.

I spent most of Christmas Eve morning in the NICU with Paige. I cried a lot that day, knowing that I would have to leave such a huge piece of my heart at the hospital. I was trying to figure out a way that I could make everyone happy. Should I just stay at the hospital and bring the boys up for Christmas? No... they needed some sense of normalcy and they needed their mom too. It's so hard needing to be in two different places at once. I also just wanted and needed to rest. I couldn't rest in that hospital. Deep down, I wished they would have just let me go home before I had her because being in that hospital made me anxious. Maybe I could have gotten further a long if they would have let me go home in the first place... but would she have survived? Would I have died? There were so many thoughts going around. See what I do there? Like I said, those thoughts still creep into my head here and there and it sucks. One thing I was happy about though, was that Paige was pretty stable... stable enough that I felt comfortable leaving for a few hours. The plan was that I would be discharged, we would go get the boys, eat dinner at Mike's parents and go right back up to see her before leaving for the night.

Mike left that morning to take care of things with the boys. I was cleared for discharge at around 3 so he came back to pick me up and to say goodbye to Paige for a few hours. We were both so sad when we walked out of that room. Her wonderful nurse, Emily, told us to contact her whenever we needed and that she would give us updates every 5 minutes if we wanted her to (which is pretty much how it was!). I felt at ease knowing an update was just a phone call away and it made leaving just a little easier.

Side note- Emily was the nurse who trained me when I started as a new grad nurse in 2016. When I walked in the day after Paige was born and saw her in there I can't tell you how relieved I felt. I couldn't  have been more thankful to have her be Paige's primary RN. I knew how she worked... she is one of the most thorough and caring people that I know, and I knew that Paige was in the very best hands. The care we received from EVERYONE was incredible.

We went back to my room and packed up all of our things and transport wheeled me down to our car. We got in the car and started to drive away and I just burst into tears. I remember feeling something similar when I had to leave my boys in the NICU, but like I said, they never had any serious conditions. Leaving Paige that day, in the condition she was in, was almost too much to bear.

We drove to my parents and picked up the boys. Everyone was there to greet us. I again burst into tears when I saw them all. It felt like an out of body experience. I had been so excited for all of my siblings to come into town for the holidays, we had so many fun activities planned and I had barely gotten to see them. All of them had come up to visit Paige and I, but that's the most I had seen of them. They were worried about me and wanted me to get some rest so we gathered up all of the boy's things and left for home.

By that time, it was close to 5 o'clock. We were supposed to be to Mike's parents by 4. We told them to go ahead and eat without us. I was sad, exhausted, in a lot of pain and just wanted to go home and shower. I contemplated not going over there at all, but again I wanted my boys to have a fun time so we told them we would be there as soon as we could.

Walking into our house was a painful experience on its own. Seeing Paige's clothes laid out at the foot of our bed that we had just picked out together as a family just 3 weeks before, and all of the excitement of Christmas we had left behind was so hard. I just wanted everything to go back to how it was. I felt so bad and missed her so much... I wanted to get back to her. I hadn't even been gone from the hospital for an hour before I called her nurse to check on her.

She told me that Paige was stable so I felt slightly more at ease. After I got a positive update, I felt a little better and we continued to get ready. Before we left, we took pictures of the boys in front of our tree on Christmas eve like we do every year. I always get my boys nice new clothes to wear on Christmas Eve, but with everything that happened, I never got a chance to go out and buy them anything so I tried to put something together for them. This picture was so hard to take... we so badly wanted Paige there with us. I just wanted her back in my belly. It was heartbreaking.

Before we went to Mike's parents house, we stopped by the Meridian St. Luke's to pick up my pain medication prescription. I hadn't had anything for pain for over 8 hours, and I was hurting pretty bad by that point. As I sat in the parking lot, waiting for Mike to pick up the medication, I decided to start an Instagram account for Paige. I had received advice to start one from a friend who had a previous 23 weeker. She told me how nice it was to have a central place, other than a personal account, to update everyone and that it could second as a journal to look back on. I thought it was a wonderful idea. I was so excited to be able to share our beautiful baby girl's story with everyone! Here was my first update...

By the time we got to Mike's parents house, I felt awful. For one, I had finally been able to take a pain med and felt pretty loopy, and two, I just didn't want to be anywhere but with Paige. I sat in one of the spare rooms, crying as I pumped and waited for an update. I didn't want to keep bothering her nurses, but I wanted to make sure she was okay. At that point I would have given anything to have a real-time camera in the room with a way to communicate constantly with the nurses. I texted Mike to come in because I was having another panic attack. I asked him all the same questions... mostly I just wondered how we were going to get her through this. He quickly eased my mind by reminding me how stable she had been that afternoon and that we could go visit her before we went home for the night. He also reminded me that her nurses were always available for updates and would let us know if anything had changed. I knew that he was right and that I needed to somehow pull it together no matter how bad I was hurting inside. I needed to be strong, focus on the positive, and try to make this day special for my boys. Being able to receive updates from her nurse throughout the evening whenever I needed was pretty much the only way I was able to stay. I would have been a wreck without the constant contact. I was glued to my phone waiting for the next update on how she was doing.

She had found her little toes! Cutest thing ever!

We spent the evening eating and exchanging gifts. The boys had so much fun when the elves dropped off presents for them on my in-laws doorstep. I mostly sat in the corner, trying to enjoy the evening, but not succeeding. I remember everything being so loud because of the side affects of the medications I was on. I just wanted to go into a room and hide. I cried when I opened presents with Paige's name on them. It still brings me to tears-those feelings of wishing so bad that things were different. Wishing she was still in my belly and that I was opening her gifts with cute clothes in them in anticipation for her arrival... not wondering if she would even make it to wear them.

At shift change, Emily went off shift and Amy, the night shift nurse came on. She was also one of our favorites. Let's be honest, everyone was our favorite. Paige had so many amazing fill in parents when we couldn't be there! We knew that she was in wonderful hands with Amy and she continued updating us throughout the evening and Paige continued to have a quiet Christmas Eve.

We left Mike's parents as soon as we could, (around 9:30p.m.) to go visit Paige before we headed home. When we finally arrived back at the hospital, I couldn't get up to that NICU fast enough! Mike dropped me off at the front and I ran in, as fast as I could having just had a c-section. 

When the boys and Mike arrived after parking the car, I came out and took a picture of the boys in the waiting room in front of the Christmas tree. It was the closest we could get to having the three of them together, and I hoped with all of my heart that next year this would just be a memory and that all my babies would be gathered around our tree at home. 

Mike and I each spent time with Paige that night. At one point, one of the staff members offered to go out to the waiting room to hang out with the boys, so that we could get a picture together with Paige on her first Christmas Eve. In total, we stayed for about an hour 1/2 before we decided that we should probably get home. I just keep thinking of my poor sweet boys in that waiting room, on Christmas Eve. I felt awful. It was so hard to leave her again but I knew that she was in good hands, that I could get updates whenever I wanted to, and that I needed to be home for my boys too.

When we got home, we tried to keep everything as normal as possible. We read the boys "The night before Christmas." and laid out Christmas cookies for Santa. I usually bake cookies with the boys on the 23rd, but again, wasn't able to do that this year. I was thankful to my mom for doing that with them for me so we had something to leave for Santa. After we got them to bed, Mike and I were up until about 2 a.m. getting Christmas ready. There were lots of tears, and lots of anxiety. I wasn't sure how I was going to sleep that night being 30 minutes away, missing and worrying about our sweet angel, but somehow, I got through it.

Throughout the night I continued to call Amy for updates. Looking back at the time stamps of the calls, I realized that I didn't sleep much. I knew that the boys would be up early and I honestly was so exhausted I didn't know what to do. After pumping and getting ready for bed, I finally drifted off to sleep before the boys woke us up about 2 hours later to open presents on Christmas morning.

NICU DAY 4 According to Daddy (December 24th, 2018 Christmas Eve) 

Hey there little one. Well it’s a great start to this Christmas eve day. Mom had me call down to your room this am at about 0600 to see how things went and we couldn’t have gotten a better report. You went down on your O2 needs (PIP, PEEP, etc.), and the only I guess major thing was the need for your ET tube to be pulled back just a “smidge” because on the chest X-ray it looked to be a little too deep. So, it got pulled back just a little bit to maximize the efficiency of the jet and work of breathing. So, with that news we went back to sleep with happy hearts.

Well with every up there seems to be a down when it comes to NICU babies. But listen this down was the only negative aspect of the day. Because they went down on your PEEP, this caused you to be increased on your FIO2 which would flirt with the 60% margin but stayed 40-55% most of the day. The reason your PEEP was turned down even more from the 0600 cares to 8.5 around 0900 after the morning Dr. rounded which was related to the X-ray obtained earlier showing expansion in the abdominal picture. I guess you can say they are trying to fine tune you to perfection, although your practically there.

Mom on the other hand had a good day of pumping and milk production. At the rate you are eating I would say you could probably survive in the wild for at least two months. Speaking of mom, Paige, she loves you so stinking much it hurts her to see you in that giraffe. I hope you know that we love you so much and that you are loved by many many people.

Today was a great day little one and again a pretty short report for you but nothing really happened which we love to hear as parents. A great day and a relaxing day at its best.

Today was a great day and tomorrow is another day, stay strong little one.

We love you sweetie

NICU Day 3 {December 23rd-Paige's First Doll from Daddy, and Christmas Eve, Eve in the Hospital.}

I had to share this story because it's too cute not to share. The day after Paige was born, her primary nurse Emily, told us that we should go out and buy a cute doll, or something to compare Paige to as she grew so that we could see the progress she made. We thought that was such a great idea and Mike took it very seriously. He went out the morning of the 23rd, without me knowing, and bought his little girl her first baby doll. I will never forget him walking into my hospital room so proudly holding that little baby. It brought me to tears then and still does to this day. When we found out we were having a girl, he was so excited, as we all were, to be able to do all things girl. He couldn't wait to take it over to her and give it to her. Here is the first picture we took with her new dolly.

The 23rd was a fairly stable day for Paige. She still continued to fight the battles I mentioned in my previous post, but overall it was a fairly routine and quiet day.

That morning, the patient care coordinators told us that there was a group of people who organized a Christmas closet for the parents of all the kids who had to be in the hospital over the holidays. They had people donate hundreds of toys and the parents could go in an pick out 3 toys for each of their children. Mike and I were in tears as we walked through the room. It made me realize even more that Christmas is about serving others and I hope to be able to one day help others in a similar way.

We had already gotten Christmas for the boys, and we didn't want to take things away from people who really needed it, but they insisted that's what it was for, so we picked out a few things for all 3 of our babies and they wrapped them up and delivered them to our room. That night when Paige had a stable few hours, we had our family bring the boys in and we had a fun little Christmas eve, eve at the hospital.

I had been begging my doctor's to let me go home for Christmas. Dr. West (my OB) was not on call over the weekend and into the holiday, so the doctors who were on, didn't know me. All they knew was that my blood pressures were still scary high and that they were still needing to rescue me with IV medications every night. At one point I was over in the NICU with Paige and I thought my head was going to explode. They had to rush me back to my room and found that my blood pressure was extremely high. They had to give me an IV medication and wouldn't let me go back over with our visitors to visit Paige. I wondered if I would ever get home. We had already been through so much... all I wanted was to be home and make Christmas as normal as possible for the boys. I told them I would come back the night of the 25th if they'd just let me go home and rest for one night. They told me I could only be discharged if I had a good reading on the night of the 23rd and didn't need any IV medication.

That night, I was determined to get a good blood pressure reading. The nurse gave me my blood pressure meds and a sleeping pill, I took a shower and rested for 30 minutes. She came in and took it and we got one within the parameters. I was so happy, but at that same moment, I was so sad because I knew that meant I would have to leave my baby at the hospital the next day.

NICU DAY 3 According to Daddy (December 23rd, 2018) 

Our little pipsqueak, man do you know how to give mom and me a run for our money!!! Yesterday was a day that we will remember forever and eternity. With your low labs and O2 needs leading to an US of your head and mom going from crying to super crying to her asking the same questions over and over to the Drs, etc., we got through it with smiles on our faces because it turned out to end on a good note. With you settled and ready for a nice sleep mom was able to get back up to her room on antepartum and actually rest (as well as anyone can say they actually rested in a hospital).

Although you scared the crap out of us (one of many time I’m sure), you seemed to pop right back even if that required a little bit of support from RT. I can’t begin to tell you what a relief that was as parents of the sick child to see you work so hard to want to do it all on your own. It was a very uneventful day to say the least which is a good day in my book, it means that you got rest and are letting that little body grow. Now don’t be surprised at your own body if you lose a little weight this first week, that is totally normal, so we will see what tomorrow will say.

Cares went smoothly, and you have been peeing like a race horse. You had a couple poopy/smeary diapers which is good to see but also required an enema today to help that go a little more smoothly (no pun intended). I think that enema was the biggest excitement for the day today. Did you like it? No, you told the nurse that by kicking at her and squirming around like a boxer does before a fight. You were ready to throw down for a good hour before mom and I left to try and get more sleep. But as always, we checked in on you with the nurse about every couple hours to make sure you were behaving.

Today was a great day and a short report and tomorrow is a new day. Stay strong little one and know that we love you.

Love Mom, Dad, Jace, and Brooks

NICU Day 2 { December 22nd- Treat every single day as a gift}

Things started to settle for Paige around day two. All the lines were in place, the breathing tube was in, and she remained fairly stable. Now our hopes were that she would continue to do well and be able to sit on that ventilator and grow. She needed to grow her lungs and obviously her little body, and we needed her to do it without getting sick.

Her first wave. Her eyes are still tightly fused here, but she is absolutely perfect.

Back in my room, I got the news from my doctor that he was sure that Paige wouldn't have survived much longer inside of me. He told me that my placenta looked very aged and sick. It was extremely small, below the 5th percentile of how big it should be for that gestation, it was fragmented, and it was ischemic (blood and oxygen deprived). He also said that when he delivered Paige, her fluid was in fact low, as seen on the ultrasound, and that it was murky in color. He said this was all due to the severe pre-eclampsia and that she wouldn't have been able to survive in those conditions for much longer.

In a way, that brought me some comfort knowing that we had made the right decision to deliver her when we did. It was still hard to accept either way. I continued to blame myself, and was constantly questioning everything, wondering if there was anything I could have done differently. I still really struggle with those same feelings, even today.

One thing I was extremely concerned about from the very beginning, was Paige suffering some form of devastating brain injury. Babies born as early as Paige have a high risk of brain injury such as hemorrhaging, or damage to the white matter of the brain. I knew that the biggest risk for hemorrhaging was within the first 5 days (from the birth, moving around, pressure changes, etc), and on day two we had our first big scare. During rounds, the morning of the 22nd, they informed Michael and I that her hematocrit (blood count) dropped pretty significantly, meaning she was losing blood somewhere. That is a huge red flag for a brain bleed. The doctors weren't sure if she was bleeding somewhere internally (possibly in the brain) or if they had just drawn so much blood from her that the blood count was low. She was incredibly small, so any amount of blood they took from her was too much, even half a milliliter! Either way, it absolutely terrified me and I couldn't go on another minute without knowing for sure. The routine head ultrasounds for babies born at her gestational age are scheduled for day 5, at 2 weeks and then at a month. I just couldn't wait until day 5 and asked them if we could get an ultrasound that day to check. They said that they would be happy to order that to try to put my mind at ease.

The wait for that head ultrasound was excruciating. I knew that if she had a severe brain bleed, we'd have to reconsider if we wanted to continue life support. From the very beginning, Mike and I discussed that we didn't want Paige to suffer through a life of severe disability just because we wanted to keep her here with us. As devastating as it was to think about, we had to put our own selfishness aside. We didn't think it was fair for her to have to be bedridden, unable to walk, talk, eat or care for herself, and possibly live in a hospital for the rest of their life. No one should have to live that way.

I wanted to be there to hold her little hand while she got the ultrasound. They told me it was scheduled at 11 and I had a medication I needed to take back in my room before that time, so I hurried there and back as fast as I could. I think I was gone for about 10-15 minutes and by the time I had gotten back, they had come (early!), completed the ultrasound and were gone. The nurse said it took the tech less than 5 minutes to get all of the pictures they needed. Paige was very cooperative! I was so proud of my sweet, amazing little girl. While waiting for the results, I sat by her side holding her hand and praying with all of my heart that everything would be okay. 

About an hour and a half later, the doctor came in and said, "Well Danielle... (my heart sunk)... the radiologist just called me and told me that other than an extremely small spot on the right side, the rest of the ultrasound is completely normal. The radiologist thinks the spot is either a very small grade 1 bleed (which the brain can absorb and heal), or a choroid plexus cyst (small benign cyst found on the brain). The hematocrit drop was most likely due to the blood we drew for labs."

Paige's perfect Brain on Ultrasound that Day.

I can't tell you how relieved I was to know that her brain was okay! I almost collapsed with relief and just started crying. I had been so worried and tense, that after I found out the good news, I thought I might pass out. I realized right then that I was absolutely exhausted from the stress of everything and decided to head back to my room and try to rest for a bit. Before I left I sat for a little while longer, holding her hand, telling her how much I loved her and how amazing she was and thanked Heavenly Father for such an incredible miracle!

For some reason, I remember that walk back to my room so vividly. My room was on the same floor as the NICU, but on the complete opposite side of the hospital. I will never forget walking down those halls, pushing my wheelchair, crying with happiness that our baby girl was okay. When I got there, I called Mike to let him know the amazing news. He was out taking care of the boys for a few hours. He was elated too and couldn't wait to get back to spend time with his baby girl. I let our parents know, and for the next few hours I finally felt a little more at ease and was able to take a good nap.

Over the next few days, sweet Paige started to fight several battles;

The first and most concerning battle was her respiratory status. Her lungs were extremely premature and we expected her to struggle, but we were honestly just praying for a miracle. She was up, down and all over the place with her oxygen requirements. One the night of the 22nd, her oxygen needs went up into to 70-80% (we breathe 21% oxygen, just to give you an idea). It was during evening rounds and I was once again, beside myself with worry. I swear, being a NICU nurse brought about 1000 times the anxiety that I feel a normal mom would have. I've seen babies sit on 100% oxygen for a few days/weeks, only to have the doctors eventually tell the parents that there is nothing else they can do. I was terrified of that happening and the closer she got to 100%, the more worried I would get. I asked them what they would do if her oxygen needs got to 100% and they didn't have anywhere to go. They said they had several options left to try if she got anywhere close to that. It was beyond terrifying to be on the other side of those conversations.The great thing though, was that she would always eventually wean back down to her baseline needs which were 40-50%, especially during the day. Paige always did so much better during the day.

An X-Ray of Paige's Lungs on December 22nd.

The next battle she was fighting was her weight. Everyone knows that the first week after birth, it's not unusual to see babies lose up to 10% of their birth weight, before stabilizing and beginning to gain. I can't tell you how many times I've given that speech to new momma's in the NICU. But with Paige, I was terrified of any weight loss. She was already so tiny! How could she handle losing any more? She wasn't even a pound at birth. I just remember wanting to get through that first week without any significant weight losses, unfortunately we wouldn't be so lucky, which is a story I'll get into later.

It was so hard to see that weight written out.

This gives you an idea of how tiny she was, although pictures don't give you the proper perspective, she was tinier in person.

Momma taking care of her. <3

The third battle she was fighting was her nutritional/metabolic status. Because she was so tiny, they had trouble getting her the nutrients she needed without causing issues. Paige had two central lines inserted into her belly button. One was going into a vein, and the other was inserted into an artery. The line going into her vein was where they were giving her TPN (IV nutrition- Sugar, electrolytes, Fats, etc.) and medications, and the line going into her artery allowed the medical team to monitor her blood pressures constantly in real time. She also had an tube inserted into her mouth that went down into her stomach to give her my breast milk. Babies as small as Paige need to be slowly introduced to feeds because their stomach is so immature and they can develop a deadly complication called NEC (Necrotizing Entercolitis), which is basically where the bowel and intestine become inflamed and die. So until they could work her up to full feeds, they gave her the nutrients she needed through her IV.

You can see her lines pretty well here (the two tubes coming out of her belly button). The one on the left is going into her artery and the one on the right is in her vein. The brown tube coming out of her mouth is her feeding tube.

Unfortunately because of her size, what she needed to keep the lines open (keep them from clotting off), and get the nutrients in that she desperately needed, was more than her little body could handle. If they gave her too much fluid, they could fluid overload her, yet if they didn't give her what she needed, she wouldn't grow. On top of that, her liver was struggling with metabolizing the fat's they were giving her, so they would have to turn the fats off for several hours or a day and then turn it back on so that she would get what she needed. The feeds she was getting through her feeding tube with my milk (which was only about 1 milliliter), was fluid they had to factor into her fluid calculations as well. It was a fine and confusing balance, and there were many dietitians and pharmacists working very hard to find something that would work for her.

 The last notable battle she was fighting was staying hemodynamically stable (stable blood counts and blood pressures). As I mentioned above, because she was so tiny, taking even the smallest amount of blood from her to check labs was enough to cause her to need a blood transfusion. She had to have labs drawn almost every day to monitor her status, so they usually had to transfuse (give her blood) her every other day to replace what she lost. In her short little life, she received over 15+ blood transfusions, not including other blood products they had to give when she got sick. That is why I'm now and always will be such an advocate for blood donation. She's our little warrior.

As I mentioned in my previous post, her blood pressure was also a concern. Paige struggled with low blood pressures, which is common in premature babies. Because her blood pressures were low, her vital organs weren't getting the blood they need and weren't working like they should. The first day she wasn't producing a lot of urine, which meant her kidneys probably weren't getting the perfusion they needed because of the low blood pressure, so they started dopamine (a medication used to raise blood pressure) to help her blood pressure stabilize. It did the trick and she continued to pee well. By day 2, she was going potty like a champ and they started weaning down her dopamine. As they did, she maintained great blood pressures all on her own, which was very exciting!

Behind the scenes Mike and I spent a lot of time at Paige's bedside. I spent most of the day in the NICU and would rest back in my room when I needed to, and Mike was always by her side.  The only time he left was to spend time with the boys for a couple hours. We would always bring our boys up in the evenings to spend time with them and then we had lots of family in town for Christmas who took them to do several fun Christmas activities. I can't tell you what a relief it was to know they were taken care of.

Dad and the Boys. He's the best dad.

Roller Skating with Grandma, Grandpa, Aunts, Uncles and Cousins.

Playing with cousins. We're so thankful for family who helped us with the boys.

Although we appeared to be keeping it together on the outside, on the inside we were absolutely terrified. I remember sitting down with Dr. Amy Kirk on the night of December 22nd. Paige's oxygen was up and I was crying, overwhelmed and panicked. It was the first of many long, heartfelt discussions we had with her. She told us what I already knew. That this was going to be a long, hard journey, but that we needed to take it one day at a time and treat every single day with Paige as a gift. She told us that we needed to focus on the GOOD for that day, or even just for that moment, or we were going to go crazy. And when I say she said we, I mean me, because Mike was ALWAYS incredibly positive and always had so much hope.

Right then, I changed my outlook on the entire situation and my focus was on positivity from then on. I will forever be so thankful for that advice from an amazing doctor. Even though the worry was still there and I was still extremely anxious, we continued to move forward with faith. We felt so lucky that she was here. She was here and she was wanting to fight! We needed to be strong so that we could continue to help her fight for her life! We were her advocates, we LOVED her and still LOVE her more than life itself and she NEEDED us! We literally took it minute by minute and day by day and remained hopeful that our amazing baby girl could beat all of the odds.

Getting ready for cares.

Oral Care with Mom's milk.

Every day she lived, I knelt down each night and thanked Heavenly Father for another day with her!

NICU DAY 2 According to Daddy (December 22nd, 2018) 

Oh Paige, if mom and I could get a dollar for every hour she worried about you we would be rich beyond belief hahaha. But besides making mom worry, today was an ok day. It started out as an ordinary day for you deciding whether you wanted to give us a scare or if you wanted to relax and have a good day. Well by the way I’m talking it was the first! Mom and I got down to room 20 and found out that your H&H was low meaning the blood volume was low in your body. Of course, this freaked mom out not only because your hematocrit was low but also your blood glucose was high worrying mom that you might have a brain bleed. This can happen in micro preemies in the first week or so and can be graded on a 1-4 scale. So, the Dr. on today was very understanding of mom’s feelings and decided to order the head ultrasound a couple days early to figure out why your hematocrit was so low. 

Backing up a few hours before this happened, throughout the night the RNs and RTs were getting labs and gases from your blood that let them know how your breathing and body were responding to different things that they did to your little body. The biggest thing they were looking at was your hematocrit because it kept dropping lower and lower. This is why the head US was ordered to see why it could be happening.

Now your morning X-ray was a bit too high for the liking of the Dr. meaning it didn’t get a picture of your abdomen also, so they ordered another x-ray that afternoon to confirm placement of the UAC and UVC along with the breathing tube. Well this showed the Dr. that the UVC and the breathing tube were a little too low and needed to be adjusted a bit. Well as you already can figure out, this picture also showed that you had either a collapsed lung on the right side or fluid on the lung which explained your need for an increased FIO2 up in the 40-50% and them having to figure out what to do with you. So the RT increased your PEEP (positive end expiratory pressure- helps relieve the pressure in the alveolar sacs in the lungs, and puts less stress on the breathing as a whole). So as time passed your need for oxygen decreased today into the 30’s which was a great hurdle to jump.

So back to this head US. By this time, I took Jace and Brooks to finish up some Christmas shopping and to go see Santa at the mall while mom waited for the results of your scan. I got a call from mom saying that the scan was negative, and everything was fine. AHHHHHH #angels, #praise… This didn’t mean you were out of the woods at all but a big win in our minds.

Today ended on a good note and tomorrow is another day. We love you with all our hearts Paige, you are the light of our lives and we can’t wait to see what you bring us next.

We love you so much…

Love Mom, Dad, Jace and Brooks