The first hours and day in the NICU...

NICU Day 0:

After Paige was taken to the NICU with her daddy by her side, I laid there in that operating room with the silence that remained in complete shock as to what had just happened. I don't remember much, but I remember feeling slightly relieved that she was doing okay. At the same time, I still felt overwhelming fear because I knew that she was no where near being out of the woods by any means. There were so many conflicting and confusing emotions going on. I knew that she was most likely honeymooning. Honeymooning is a phrase we use in the NICU world to describe the phase micro-preemies go through in the first couple of hours or days where they do really well, until their little bodies realize that they have to take over. I was very aware that our scary journey was just beginning.

When I got to the recovery room, the first thing I wanted to know, was when I could go see Paige. I wanted to see her, touch her and I wanted her to know that I was there. They told me that I needed to recover and that I wouldn't be able to go down for about 2 hours.

Mike came in with the boys to check on me shortly after they got me settled in. I was so happy to see them. They both ran over to me and gave me the biggest hugs. I just love those sweet boys. I was anxious to know how Paige was doing and wanted to see all the pictures and videos Mike had taken. He told me that while he was over there, they had weighed her. She weighed 400 grams (14 oz), and was 10.5 inches long. It wasn't exactly what I was hoping to hear. I was praying that he might come back and tell me the weight was off all along in the ultrasounds and that she really weighed 600 grams. Regardless though, I was happy to see that she was kicking, screaming and still breathing on her own. Mike showed the three of us the first pictures and videos of our sweet little girl. We were all so happy. Every single one of us had the biggest smile on our faces. The boys were so excited to have a new sister and couldn't wait to meet her. Mike told me they went out and told everyone in the waiting room how cute their new baby sister was and that "she is the size of a soda can!"

Here are the video's and pictures he showed us.

Family slowly started to trickle into my recovery room. The first person I remember seeing was my mom, who instantly started crying when she saw me. She had been so afraid that something was going to happen to me during the surgery because of how awful I had looked before. She was happy to see me awake and doing okay. Together, Mike and I showed each of them the pictures and videos he had taken in the NICU. We were so proud of our sweet little fighter!

After all the family came in and briefly wished us well, Mike headed back over to the NICU to be with Paige. I continued to be monitored and tried to rest. I remember I was so tired, and every time I'd try to sleep my heart rate would drop super low and I'd forget to breath. I kept telling my nurse I was afraid I would stop breathing if I went to sleep. She reassured me that she would wake me up if that happened.

Not long after our families left, Dr. Thornton the Neonatologist (Paige's doctor) came in to update me. He told me that Paige was still breathing on her own with the help of the CPAP machine and that she was just a feisty little thing. I was happy to hear that! He told me that the Nurse Practitioners were in the process of putting in central and arterial lines, so they could hydrate her and keep her more closely monitored. He was very impressed with how well she was doing being as small as she was, and informed me of what the plan was going to be for the remainder of the day. Basically the plan was to get the lines in, get fluids going and continue monitoring her respiratory status. I asked a lot of questions... as many as I could think of being as groggy and as tired as I was, but overall I was super pleased with what he had to tell me and couldn't wait to get over to see her.

After he left, I rested a little while longer and not too long after, they let me know that it was finally time to take me over to the NICU to see her! 

They called transport in to wheel me down. I was honestly terrified for what I would be wheeled into when I got to her room. What if she suddenly crashed and they were trying to resuscitate her? All the awful scenarios ran through my head. However, when we arrived, the room was surprisingly cheerful and calm. I credit that to the wonderful nurses and RT's! They wheeled me up to her little isolette and pulled the blanket back that was covering the top to keep it dark. It was the first time I really got to see her semi-close up. The second I saw her, I said... "She is so beautiful! And looks just like Jace! That is Jace's mouth!" The Nurse and RT were both amazed that I could see that with all of the equipment on her face, but I knew that she was ours :) She had Jace's mouth and Brooks' eye's. Her eyes were fused, but I could tell by the shape of them, they were his.

I laid there in my bed, for about 30 minutes just doting on our new little girl. To be honest, I was in such a fog, I don't remember exactly what was said or done. I just remember that I was so excited to have my little girl and that she was doing so well. I kind of forgot in that moment the reality and seriousness of what we would be facing. I was so intensely proud that she was ours and amazed at how impressive she was. She was such an incredible little fighter. The Nurses and RT's were so kind and reassuring (We love you Jen and Terra!) and promised me they'd take good care of her until I could come back. 

After that first visit, they wheeled me back to my room on Antepartum where it had all started. It felt weird to be back in that room. I slept the remainder of the day and night- And when I say I slept, I mean that I tried to sleep, but was up worrying the whole time. I was so exhausted and weak that I don't think I moved the entire night. I felt like I had been hit by a train. I remember dozing off and waking up at one point in the middle of the night in a panic. I asked Mike how we were going to get through this? What if she didn't make it? What other awful decisions could we potentially be faced with? What if she came out of this severely disabled? Blind? Deaf? Needing a trach for the rest of her life? How was this going to affect the boys too? Every horrible thought ran through my mind. I felt so guilty and so awful that this had happened to her... to us, and I hated that I couldn't fix it. All I wanted was to be able to take it all back and for her to be safely nestled back in my belly. All I wanted was to be over in the NICU with her all the time. What if something happened to her when I wasn't there? It was so hard knowing that I couldn't physically be where I wanted and needed to be. Mike was so comforting, and was back and forth all day and night keeping me updated on how she was doing and trying to take care of me too. He's the best.

Because I don't really remember much from the first few days, I wanted to include Mike's account of that first afternoon in the NICU and the days following. He was a lot more alert and present than I was and kept a pretty detailed journal of her first week. I am so glad that he did! I remember him sitting in his little bed by the window in my hospital room, writing these every night. It made me love him even more than I already do. He was so excited about his little girl.

Here is his first little entry, I took out the first part because it pretty much said exactly what I wrote about the days leading up to her birth...

NICU Day 0 According to daddy:

Now that you have gotten the backstory of how you started early in this world, lets skip to you, Paige L. Tinker. The C-section couldn’t have gone any smoother, with nurses, respiratory therapists, neonatologists, nurse anesthetist, and the scrub tech awaiting your arrival. Because you were so small, the reality of a baby coming out of the womb crying let alone with tone and fighting at 24 weeks gestation was not looking very good. Man were we wrong. As mom and I waited behind the blue paper screen, anticipating your arrival, what to everyone’s astonishment did we hear? But a tiny little cry that could melt the world. Our little fighter was showing science and everyone in that room who the boss was. No need for intubation or assisted breaths by the RT, but a little oxygen help from a machine known as a c-pap. You were breathing all on your own and getting those lungs working. 

Your eyes were still fused, and  your skin was almost like leather almost as if it could be see through if a light was held up to it. Your feet were as big as my thumb and your tiny little hands were as big as my thumb print. The most perfect little round head and long fingers and toes were all accounted for. The staff taking care of you in the NICU said you are a feisty little thing, but would calm down when they didn’t mess with you anymore, sounds about right. 

The next few hours they got you settled into your NICU room (#20) and watched you like a hawk. Now, because you were so premature, the thing that they worry about the most was your lungs and respiratory status. With this in mind, they had to do what was called a tube and surf from my understanding. This was to be an in and out intubation (insertion of a breathing tube into the lungs) to give you surfactant (liquid that keeps your lungs expanded to help you breathe better). Well it’s only natural to be stubborn, so they had a little trouble getting the surfactant in, but they were going to give you more a little later. Well a little later was upon us, but now they were talking about intubating you (placing a tube to help you breathe) because you started having spells (hard time breathing) and they told me if you were to have two spells in an hour then you got the tube indefinitely. 

Today was a hard day as a parent but the day is over. It is now 11:36 p.m. on Dec 20th and no intubation has been done as of yet. Tomorrow is another day and I am so glad you made it to us and showed us you are a fighter. We love you so much little one and welcome to the family! Love, Daddy

Start of NICU DAY 1 According to daddy (December 21st, 2018):

Yesterday you left us wondering what you wanted to do with your breathing. Were you going to amaze everyone and continue do it all on your own? Well you decided at 0445 this morning to get a little more help from the RT as far as the percent of oxygen that you required to keep your O2 saturation up. You went up to high 50's, low 60's for FIO2 needs. You didn’t have any more spells, but the Dr. didn’t want to wait until it was too late to intubate and get more surfactant into your lungs. 

Well mom and I were sleeping when I got a call from the Dr. telling me that they had a bit of trouble intubating you but were able to get it and the surfactant placed where it needed to be. So, as you may know by now you were intubated for the next little while and hooked up to a breathing machine called the JET. What the Dr. and RT were concerned about was the shearing force of the lungs without sufficient surfactant causing issues later in life… bringing us to the jet. What this did for you was pump little spirts of air into your lungs, keeping the alveoli open to reduce the collapse and shearing effect. This still let you breathe on your own but also helped you along as you grew stronger. 

They started feeds with you today via donor milk just because moms milk hadn’t come in yet. TPN (nutrition) was also started which gave you nutrition for development of your body, eyes, lungs etc. etc. This all was done through tubes that were placed in your umbilical cord called a UAC and a UVC (One vein, two arteries in the cord). With all of this going on., mom was anxious about you every minute of the day.

It's true. I was anxious every moment of the day. Like I said, I barely slept and woke up absolutely exhausted the next morning, but I was determined that I was going to get over to Paige as soon as I was physically able to. After we found out they put the breathing tube in and that they had struggled to get it in, my anxiety heightened even more. I sent Mike over at 6:00 a.m. and several times after that, to check on her. The poor guy didn't get much sleep either. I wanted him to stay there and just update me in real time so that I didn't have to keep bothering the nurses. He would send me updates and pictures to keep my mind at ease.

I called my nurse in at about 9 and asked her if I could try to get up. The conditions were that I had to be able to walk to the bathroom, without passing out, before they'd let me go to the NICU.  That first time I tried, I was able to sit up in bed and scoot to the edge of the bed. When I tried to stand up, I was too dizzy to even take a step, so that was my first failed attempt. I asked the nurse when I could try again, and she said in about an hour.

Exactly one hour later, I promptly pushed my call button to get the nurse in to help me stand again. I was able to get to the side of the bed, stand up and I made it about half way to the bathroom before I realized I wasn't going to make it and almost passed out onto the floor. Mike and the Nurse got me back to my bed and I just laid there crying, because I wanted so bad to get over to the NICU to see my baby. The nurse told me it was probably the magnesium that was making me so woozy and that it would be best if we waited to try again once they turned off the drip. Then, they could take out the catheter too. The magnesium drip had to be on for 24 hours, so they could ensure that I wouldn't have a seizure due to my elevated blood pressures and preeclampsia. They had started it just prior to my delivery at about noon the day before, so I waited, a little impatiently, until noon for them to come in and turn it off. 

While I was waiting, I decided it was time to announce to the world, the birth of our incredible daughter. Here is what I posted...

Introducing: Paige Lorraine Tinker 💕 Born 12/20/18 at 12:31 p.m. Weighing in at just 14oz. and 10 inches long. She came out fiesty, crying and fighting and is continuing to fight. She lasted on cpap for about 15 hours before they had to intubate her and she continues to impress all the doctors, nurses and RTs. She looks just like her older brothers and loves to hold daddy’s hand. This is going to be a long, hard road and we are scared to death, but we know that Heavenly Father has a special and unique plan for her and that gives us so much comfort. We love you so much sweet girl!

Finally the time arrived. They came in and shut that yucky magnesium off! They told me to wait 30 minutes to an hour before we attempted to get up again, that way we could give my body time to get rid of some of the medication in my system. Shortly after the nurse left, I felt the sudden urge to pee so bad. I had the catheter in and I knew it had to be kinked because it was the most uncomfortable feeling. I pushed the call light because the nurses didn't want me getting up without their help, and  they didn't want Mike helping me either, so I sat there on the side of the bed waiting for them to answer my call light. I finally couldn't wait any longer, the pain from my bladder being so full was so bad that it was hurting my entire abdomen, including my c-section incision. I was literally almost to the point of screaming out in pain. I told Mike to get me up and get me to the bathroom right away. Long story short and sparing you all the details about my excursion to restroom, I made it there and back without passing out (barely) and they were able to take out my catheter. After 4-5 hours of trying, I was finally cleared to head over to the NICU.

I remember so well, that second time wheeling back to the NICU to see Paige. This time I wasn't on magnesium, or the high from just giving birth. I again didn't know what I was about to walk in to and I was absolutely terrified. When my boys were in the NICU, they didn't have any serious conditions...they had blood sugar and feeding issues and that was it. It was always exciting to visit. This time was so very different. 

Mike checked us in at the front desk and we stopped by the scrub room to get all scrubbed in. I have never washed my hands so thoroughly in my entire life. I didn't want any germs left on my hands, I did not want her to get sick. As he wheeled me down the long hallway towards her room, I am not even kidding when I say those walls have never felt so dark. I felt like they were going to cave in on me. I was cold and scared and felt physically sick to my stomach. Right in front of us, the X-ray technician pulled out the machine and started wheeling it down the hall. I just knew it was for Paige and I started to panic inside, wondering why she was needing an X-Ray. 

We followed the tech all the way to Paige's room and we sat outside the room, watching as they took an x-ray of Paige's lungs. They came out and explained to me that they had just given her another round of surfactant and they were doing an x-ray to follow up. I was relieved that it wasn't super serious, but right then, the reality of everything hit me like a ton of bricks. I just lost it. I started hysterically crying, asking if they thought she was going to make it. Asking if they had given her blood, antibiotics, asking anything I could to find out what was going on. They reassured me that she was still doing great. She hadn't needed any blood or antibiotics so far. She was now on the Jet (The ventilator Mike talked about), but other than that, there weren't really any changes from the previous day. I remember the nurse practitioner reassuring me that there was a baby down the hall who started out as small as Paige, one that I had remembered from working there, who was now bottle feeding and getting ready to go home. She told me that Paige could beat this and they were doing everything possible to help her. I felt reassured for the moment.

After they completed the X-Ray, Mike wheeled me in to see her. This was the first time I would see her with a clear mind and be able to touch her. I couldn't believe my eyes. She was so tiny, so fragile, yet so perfect. She had all ten fingers and ten toes, she had the most perfectly round head and the cutest little ears. I couldn't believe her bright blonde hair and eye brows. She was absolutely gorgeous!

As I sat there and watched her, I wondered how a person could be so tiny, yet so strong. I thought about all the NICU mammas I’ve watched come in, terrified to see their baby, terrified to touch them. I now knew how they felt. I wondered how in the world I got to that point. I couldn’t believe this was happening. I never dreamed that this would happen to us. I never thought it would be MY baby in that isolette, with that breathing tube, on that ventilator, with those lines, the transparent skin... it was all incredibly and painfully overwhelming. I again broke down as I thought about what the next several months would bring. Infection? NEC? Brain Injury? Respiratory problems? I knew too much and I was making myself crazy with all of the scary thoughts. It was such a confusing feeling to be so excited about just having a baby, yet terrified at the same time that I might not get to keep her. I felt so guilty that my body had failed her. She was now required to fight every day just to live, and it was because of me. It tore me apart, and still does to this day.

Our first time holding our little girl. Such an unrealistic experience. We wore gloves because we were so terrified of getting her sick.

The doctor came in shortly after we arrived and told us that other than placing the breathing tube early that morning and the issues they had getting the surfactant into her lungs, that the only probelm they were currently having was that Paige was not peeing as much as they would have liked and her blood pressures were borderline low. He wanted to give her a saline bolus over one hour and start dopamine (a blood pressure medication used to increase blood pressure), to see if it was in fact a blood pressure issue that wasn’t allowing her to pee. It worked great. She started to pee more and more each diaper change and her blood pressures were improving.

I don't remember much more from that day. It was all incredibly overwhelming and I was exhausted and not feeling well. My blood pressures were acting up again, so I was back and forth between spending as much time in the NICU with Paige and trying to rest.

Here are details from the remainder of the day in Mike's words...

You loved to lay on your right side as it seems you’re the most comfortable there. After the surfactant, you were weaned down to 30% on your FIO2, meaning you didn’t need much more help with oxygen delivery. 

                                             

About 11:00 p.m. on Dec. 21st, the RN was doing cares when you decided to dip your oxygen saturations and the RT had to keep turning the FIO2 up and up and up. Suctioning and repositioning were implemented to try and assist you in your recovery back into the 90’s. Now before this happened I got to change your diaper and you were kicking at me like crazy. Every time I got the diaper under your butt you would plant your feet and scoot up in the crib. STINKER! So maybe it was I who started the decrease in O2. But as with anything mom was by my side coaching me through it, this being her forte’. She also of course got to change your diaper before me and it went as smooth as butter, NORMAL!

Day two is now over and tomorrow is a new day. We can’t wait to hold you little one (hopefully soon). We love you with all our of our hearts. Love, Daddy