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