Tuesday, September 27, 2016

Life as a NICU baby and parent

Starlynn's story starts in the NICU. After she was delivered, the doctor passed her through a window to the NICU team. She had to have a face mask with oxygen right at first to get her lungs open and breathing on her own. Then she was put on a c-pap machine for about an hour.

After that she was breathing room air on her own for the first week. She had to have 2 lines placed into her umbilical cord. One was into an artery and that one was kind of scary because if it came out she could have bled out. The other one was into a vein and that one stayed in longer than the other. She was also put under lights to help with her bilirubin and bruising. Because of the tramautic delivery, Starlynn was bruised all down her left side. Her left arm was the one she kept pushing out and because they kept having to push it back in, her chest was very bruised along with her knees and a spot on her left ankle. She even had a bit of a black eye on her left eye. She was pretty beat up. They did x-rays on her arm and chest multiple times to ensure no other injuries. It even appeared that she might have a serious s curve to her back but that straightened out after a couple weeks. We think it was just caused by the tight position she was in for so long. The light therapy she was on really helped and her bruising went away pretty quickly but her bilirubin still got too high and so she was under the lights for several days. She had to wear a little eye mask to protect her eyes. It was so great when they were finally able to take that off her permanently.

The day she was born, I was wheeled past her and got a quick glimpse of my tiny baby. I was then wheeled to my room and Connie stopped in with the kids before they headed up to the cabin for the week. The timing sucked but I was so grateful for so much family that was able to take on and love my kids so much while we were dealing with baby stuff. We hugged those kids and then sent them on their way. It was hard not seeing them for a whole week but luckily Rachel found a couple random spots where she had cell service and sent us pictures throughout the week. After they left, I had the most amazing nurse who helped me to the bathroom and really cleaned me up. She went above and beyond in my opinion.

Once I was cleaned up I was able to go back up to the NICU to see Starlynn. We had a sweet nurse who was explaining all the cords and tubes and giving us so much information but I got so sleepy and started zoning out. Starlynn was in A NICU which was where they triaged the babies who were just born and where they kept the seriously sick babies. Star was only there for 2 days thankfully. While she was in A we had some seriously awesome nurses who taught us so much about our preemie baby girl. They taught us how to touch her and talk to her and how to take care of her. By the second day I was able to change her extra small diapers and take her temperature. I was even lucky enough to get to hold her that second day. Most of the time, if they have an arterial line they don't like them to be held because of how dangerous it can be but the charge nurse that was there gave us the ok. It was the best moment I'd had in a long time. She was so little and weighed practically nothing but I felt complete once she was placed in my arms.

Those days while I was still in the hospital recovering were spent sleeping, pumping, and visiting Starlynn. The NICU has a system called 'cluster cares' where they change the baby's diaper, get their temp, and feed them. They have a pretty strict three hour schedule and we spent our days counting the hours until the next care. We were able to go see her anytime we wanted but it was best for her to just sleep during those hours.

From day one I was given a medical grade breast pump and got my milk to come in and pumped everything she ate. When Star was discharged, I had 50 bottles of frozen milk that I had brought in. Starlynn was born on a Saturday and I stayed my max allowed days and was discharged early Wednesday morning. It was a pretty emotional day for me knowing we were leaving and my baby was staying.

Thankfully, I have a great aunt and uncle who live in Orem about 15-20mins from the hospital and they had a guest room we used till Saturday. The kids came home from the cabin that day so we made the long drive home at that point. The day I was discharged was also the first day I got to do skin to skin with her. It was a pretty special moment and I'm so grateful for caring nurses who totally bent the rules to let me hold her a little bit longer that day. Ben and I spent as much time as we could at the hospital that first week but once the kids got home real life hit us pretty hard. Gratefully Ben has been able to work from home but he got the best connection at night so our schedules were off. He'd be up all night and sleep during the day. This put a lot of responsibility on our big kids because I would leave for the hospital at 10:00 every morning and not get home till around 2:00 in the afternoon. I would cry as I left Sam and the kids, usually Sam was crying too, and I would cry when I left the NICU. It was pretty much impossible to not feel completely torn in two. I wanted to be there and take care of my baby regardless of where I was. For weeks I pumped at home and at the hospital and drove back and forth. Due to having a baby in the NICU and a family at home, my incision took a long time to heal. I had to go in and see a nurse three times. I just couldn't keep it from pulling apart in a couple spots and had to have extra strips placed. I was pretty sore for weeks and finally felt normal about 4-5 weeks after she was born. But I never missed a single day of those 32 days she was in the NICU. Ben wasn't able to go in very often, once because he caught a seriously nasty cold and because he had other responsibilities at home he was covering for me. Starlynn was 2 weeks old when we were able to bring the big kids in to see her. It was Father's Day and pretty great to see their reactions to how little she was. It was also the first time I tried nursing her. Starlynn spent her time in the NICU as a feeder and a grower. She just had to be in their so she could grow and learn to eat. They have an amazing occupational therapist who teaches the babies how to eat because that's their 'job'. She was so great and very encouraging and helpful. She worked with me and Starlynn to get her to nurse. We didn't have much success in the hospital because she was still so small and lacked the muscles. She was also able to come home sooner because we bottle fed her instead. But I'm so happy to report that once Starlynn hit 38 weeks she started nursing and has been doing so ever since. She still needs a couple bottles for the extra calories and iron vitamins but she is nursing the majority of the time and I love it. Starlynn was around 2 week old when they clipped her tongue. It was a pretty severe tongue tie but once it was clipped her feedings increased and she latched a couple times. I was there for the procedure and it was pretty heart wrenching but I'm so glad we did it and after about 5 minutes she was totally fine. Starlynn also has a herniated belly button. As if being early wasn't enough she has these extra things we dealt with and continue to deal with. But I'm extremely grateful that she's didn't have any serious medical problems and that we just had to watch her grow in the NICU.

The NICU nurses are absolute angels. We had several that really took the time to answer any questions and reassure me that Starlynn was being very well taken care of. I truly believe she was but it was still so hard to leave her under their care. Finally on July 4th, the doctors informed me that Starlynn was ready to go home. We had a few things we needed to take care of but she was ready. The night of the 4th Ben and I spent our time cleaning out the car and installing car seats. I also tried to clean the house the best I could too.

On July 5th we went into the NICU and spent the night there taking care of Starlynn by ourselves. It was a pretty long night and we didn't get much sleep but on the morning of the 6th, after 32 days, we took our daughter home.

It was a pretty emotional day but much happier. Starlynn came home on oxygen and we are still dealing with that. It's a royal pain having her attached to a tank and monitor but I've been so grateful to have it. It's given me some peace of mind knowing the monitors will go off if she stops breathing for more than 20 seconds. It's scary when the alarm goes off but at least we can then take care of the problem. She's had some apnea problems that have been pretty scary but that's why we were trained in baby CPR before we could be discharged and why we have the monitor and oxygen. When Starlynn came home she weighed 5lbs 9oz. She was still very small and on the NICU schedule. She didn't really leave our bedroom ever and she just slept and ate. I continued to pump and bottle feed her and try to take care of her, myself, and my family. Then about 10 days after Starlynn was home we moved into our own home (I'll do a whole post on that next).

 Our life has seemed pretty crazy lately. While Starlynn has been an incredible miracle of a blessing, we also recognize that this has been a big trial for our family. I do think we have rallied and come together and are even closer because of it all. My big kids are seriously the best and are growing into some pretty amazing and compassionate people. I would not have been able to survive without their help. I don't know why my water broke early and probably never will in this life but I'm so grateful that the Lord was watching over me and Starlynn. During my hour long drives into the hospital I often spent the first part of the drive praying out loud. Some days I cried out in frustration and pain and others I cried out in gratitude. But I do know that my Heavenly Father hears and answers prayers and continues to help me. I found a little saying about preemies being a little bit of heaven sent down to earth so I can see a miracle in the making. And I totally believe this.  

Twinkle Twinkle

"Though she be but little, she is fierce"
Introducing our tiny miracle, Starlynn Tami. Born on June 4th at 7:30AM, weighing 3lbs 9oz and 16 inches long.

I have to share how we came up with her name. Really Ben takes all the credit for her first name. Of course we had to come up with another S name and we were really struggling with choosing a name we both really loved. Then one night Ben was in the shower and letting his mind wander to 'what ifs'. What if something happened to me when the baby was born? He wanted my name to be a part of her name but Staryn was kind of weird. Then Starlynn came to him. STARlYNn. When he first suggested the name I loved it immediately but somehow managed to love it even more after he showed me how my name was in it. For her middle name we had both wanted to use Tami. My mom's name is Tamara but she's gone by Tami her whole life and Ben has a sister who passed away as an infant, named Tami. It was the perfect name to cover both families. While I was laying in bed during that week, trying to stay pregnant, Ben would sing her lullaby to me, Twinkle Twinkle Little Star and I am Like a Star from the Primary hymnbook. We sing these songs to her even now and she will probably get sick of them someday but they mean so much to me right now.

Her birthday is kind of special too. The earliest I could have been induced if she'd gone full term, was my grandma Water's birthday. Well she was early and instead was born on my grandma's sister Janette's birthday. Janette passed away several years before my grandma and I could just imagine the two of them arguing over who's birthday she'd share. I'm sure they, along with Ben's grandma and my grammy Day, were taking very good care of Starlynn before she joined us on this earth. I know those sweet spirits loved on her and infused their fighting spirits into her little body to help her survive and make it through her first trial of this life.

She's our little shining Star and we are so grateful she's here safe and sound.

The Longest Week of my Life

This post is going to be long and detailed but I don't want to forget a single detail of one of the greatest miracles I have been a part of. Our family welcomed baby number 5 on June 4th at 31 weeks and 4 days. This is her story...

It was the night of Friday the 27th, the kids last day of school before summer. I had such grand plans of having lots of fun throughout June and early July before the baby came so the kids would feel like they had a fun summer before we were homebound for a while. But all that changed around 3:30 am Saturday the 28th. Ben had been up late playing xbox and I had been dosing in my chair. Earlier that night I had made a drink run and made a yummy dinner. Off and on I remember having a few Braxton Hick's but didn't think anything of them. Ben's back had been really bad that week and needed help in the shower, so we had decided to shower together after he was done playing. He woke me up from sleeping in my chair around 3:30 and I went to get in the shower. As I was getting undressed I had a real quick tight contraction. It didn't really hurt but felt really strong. I got in the shower and had another one. Ben joined me and I had two more by the time I was done washing myself and helping Ben. I remember grabbing Ben during one and expressing concern that it was too early for these types of pains. He tried to reassure me that everything would be fine and I stepped out of the shower. I had another tightening and then felt like I needed to pee (really detailed remember) so I sat and peed but when I stood up I felt the tightness but with lots of pressure and then my water burst all over the bathroom floor. This was a serious burst, like a water balloon had broke between my legs. Ben was just stepping out of the shower and saw the splash. I instantly became panicky and didn't quite know what to do. Ben rushed to my side and said a prayer. Now I don't really remember his exact words but I do remember feeling somewhat at ease. Ben then tossed me his towel and streaked down to our bedroom. He put the first clothes he could find on and that happen to be MY Old Navy flag shirt and his Superman pajama pants. I folded a towel up for between my legs and had Ben grab me a nightgown. Ben then raced upstairs to let his mom know that my water broke and that we were headed to the hospital. I waddled up behind him, careful to keep my towel in place. We managed to get in the car and quickly drive to American Fork Hospital. During the drive I felt a couple small contractions but nothing painful or regular. Once at the hospital, Ben pulled up to Emergency and got me a wheelchair and wheeled me over to labor and delivery. I think we were both in a state of shock and confusion but laughed a few times still. As I was being checked in at the labor and delivery desk, the nurse made a funny face when she finally got to the question of 'how far along are you?' The day my water broke I was 30 weeks and 4 days. I was taken back to a room and a flurry of action started happening. I can't even remember how many people kept coming into my room and talking to me and doing things to me. The biggest concern was to stop the contractions so I could be transferred to a different hospital because American Fork Hospital could only handle 34 weeks and older babies. So they put in an IV and started me on Magnesium and gave me the first shot of steroids for baby. My contractions didn't seem to be increasing and I wasn't dilating so a transfer to Utah Valley Hospital was arranged. Dr. Melendez said that I had a table for two waiting for me over there. I think he truly thought that I would be delivering that day. I was then put on a gurney and transported by ambulance south to Provo to Utah Valley. I even asked about sirens. They laughed at me but I was super excited to tell the kids about my ride. Three great paramedics transported me to the other hospital around 7 o'clock that morning. While I was riding in style, Ben left before me and had to drive by himself. He said it was one of the worst 15 minute drives in his entire life.

Once we arrived at Utah Valley, the paramedics took me up the back service elevator to the 5th floor. They raced and caught an elevator that had three nurses already in it. Little did I know what a tender mercy it was for me that we caught that elevator. Here I am laying on my side, strapped to the gurney, not really sure what to expect at this hospital and if I was going to be having my baby that day too early when one of the nurse asks me how I'm doing. I replied with the details of my water breaking at 30 weeks and being transferred because of how early the baby could be. This nurse then did something that will forever be etched on my heart. She reached out to me and said "Well we're your nicu team and we're going to take care of your baby. Everything is going to be alright because we are going to take care of your baby." I had an immediate wave of peace and comfort wash over me and I know Heavenly Father sent her to ride in that elevator for a reason. For the rest of the week I told everyone about my elevator angel and how, because of her, I felt so calm with the whole situation. And gratefully I ran into her about a week after baby girl was born and was able to hug her and express my gratitude for what she said and did in that elevator. And the night before, baby was discharged I was able to hug her again and let her know that my baby was going home and thank her for keeping her word and taking care of my baby. Just another spiritual experience we had during this trial. Well Ben was eagerly awaiting my arrival in the labor and delivery waiting room and I'll always remember the look on his face as they wheeled me near him. We were put in a room and a whirlwind of doctors and nurses descended on me. I remember being really thirsty but unable to eat or drink anything because they still weren't sure if I was having a baby that day. Ben was texting and calling and updating family about the situation and called his brother Steve to come help him give me a priesthood blessing. Ben promised me in that blessing that no matter how things happened, everything was going to be okay. Another tender mercy we shared. Steve was also a life saver for Ben because he ran and grabbed tons of snacks for Ben that he really needed throughout the weeks to come. Around afternoon time Ben's mom came to sit with us. We were still kind of in limbo and not sure if baby was coming or not. I was still having a couple contractions here and there but nothing strong and regular still. I did get some pain meds through my IV but I was really hoping to just be able to sleep but didn't get to sleep until later.

 By that night the contractions had stopped but I was continuing to leak water. The doctors were hopeful though that they could keep me pregnant till 34 weeks. At that point the risk of all the preterm stuff was less but it would all depend on balancing that with how my body reacted. I was given lots and lots of antibiotics to prevent infections in me and baby. And we then started the waiting game. Ben's mom went home to help with our other kids and we just sat around waiting to see what was going to happen. I stayed pregnant overnight and received the second and last shot of steroids. That was the first big milestone we needed to hit and are still so grateful I got those shots. We were also so grateful for the couple missionaries who brought us the sacrament that day. They left us with a sweet message and a strong sense of the Spirit. That night Candice brought our other kids to visit and that was so great too. It was good to see them and let them know that I was ok and that baby girl was ok. Those three big kids are pretty awesome kids. I sure am grateful for how well they handled and continue to handle our life right now. Sunday night into Monday morning I stayed pregnant but the first of the baby's heart deceleration's started happening. We had a bit of a scare Monday morning as her heart dipped three times in about 20 minutes. I was rolled over and given some oxygen and she started doing better. Also my IV became occluded and had to be relocated. An anesthesiologist actually came to do it because my veins are so crappy. It was also during this time that we were beginning to realize that 34 weeks was most likely not going to happen. Her little heart was not handling a fluid free uterus very well.

Tuesday we met with the maternal fetal medicine doctor that we had been seeing throughout the pregnancy. She said everything looked great and that I was staying pregnant for now but if her heart keep dipping a C-section was happening immediately. I knew a C-section was my only option because little girl had been breach and with my water breaking, she went transverse with her head in my right hip side area. That night Candice brought us dinner and the kids and we were able to all eat together in the same room. I sure was missing those kiddos at that point but Candice and Connie were doing an awesome job taking care of everyone and sending pictures and videos. I don't think I will ever be able to fully express in words my love and appreciation to those two for all they did for me and my family during that time. Wednesday June 1st and I finally got to shower. I had to have a plastic bag and glove over my IV but it was so nice to get cleaned up a bit. I also got a new room that day. The room we had been in had a beautiful view of Mt. Timpanogos but the bed was a break down birthing bed and I was so uncomfortable in that bed. Our new room had more of a regular bed with extra padding. It helped but I don't believe I have been so uncomfortable for such a long time as I was during my hospital stay. My back and hips were constantly aching and I was always in a battle with myself over whether I should roll over and risk losing baby on the monitors or just stay put and suffer through the pain. If baby girl would have just stayed on the monitors my choices would have been easier but we were constantly losing her and it stressed me out all week.

Thursday they let me get out of the building and get some sunshine. Ben pushed me in a wheelchair around the front of the hospital and back in. It was so nice to get out for a bit but when we got back to the room it took the nurses 15 minutes to find baby's heartbeat. They even had to bring in an ultrasound machine to locate her. It was pretty scary to say the least. She was found and put back on the monitors but her heart kept dipping and it started to take longer to come back up at this point too. Friday morning the relief society presidency came to visit me and it was nice to feel their love and concern. That day though, brought more and more deceleration to baby girl's heart rate. We had been told that if she had more than 5 dips in an hour they would schedule the C-section and if she went down and didn't come back up, they could do an emergency C and get her out in 5 minutes. Well this just didn't sit well with us. All afternoon on Friday June 3rd, Ben was restless. Every day that week Ben and I would take a long afternoon nap and that day Ben just couldn't relax. He just didn't feel good about waiting too much longer to deliver baby girl. I was at war with myself over it. I was just so uncomfortable and ready to be done but wanted to give my baby the very best chance and stay pregnant for as long as I could. I'm so glad Ben was in tune with the Spirit that day and made his concerns known to the doctor. Dr. Drewes was on call that evening and Ben expressed how we didn't feel comfortable waiting for the emergency to happen and felt like it wasn't safe for her anymore. Dr. Drewes understood and left to talk things over with the maternal fetal medicine doctors and came back to tell us that they were all in agreement that baby girl needed to come out. I think they would have delivered her that night but I had just eaten dinner and so I needed to wait. We were put on the schedule for 6:30 the next morning, one week exactly from when my water broke. Throughout my stay at Utah Valley I had some seriously exceptional nurses. They were so good to me and I felt really cared for but that Friday night I had Rebecca. She had been a night nurse earlier in the week and so she was familiar with our situation. The charge nurse assigned me to her and she had no other patients that night. From 6pm-6am she hardly left my side and I'm so grateful for her. She put in a new IV that didn't even hurt, she prepped me for the C-section, and made sure the monitors were constantly picking up baby's heart beat. That alone was a constant process. With the C-section scheduled I knew I wanted another priesthood blessing. Ben sent out a mass text to his brothers and at about 11:00 at night, Randall, Mike, and Bishop Gifford showed up. They had to wait a bit while Rebecca adjusted monitors as baby decelled again. But I was so grateful for them and their priesthood power they used to bless me and my baby. I know that because of those blessings and all the prayers said in our behalf, things turned out better than expected. After the brothers left Ben managed to squeeze in about 2-3 hours of sleep while I managed 45 minutes or so. I just laid there listening to her heart beat, willing my body not to hurt as I stayed in one position to keep her on the monitor and prayed, over and over again I prayed. It was an incredibly long night. Around 5:00 AM the C-section prep started. The nurses shift changed at 6:00 and I was sad to say good-bye to Rebecca. My new nurses came on right as I was about to get my epidural/spinal block. Getting that was a pretty crappy experience. I've never gotten an epidural when I wasn't in pain from contractions and really wanted that pain to go away. This time the pain of the epidural was a lot worse and I even passed out because of low blood pressure. I actually have no memory of passing out, I felt like I was there answering questions the whole time but according to Ben, I was out for several seconds. I threw up somewhere during that time too due to my blood pressure dropping. I really felt quite out of it during the epidural and for some time after it. Then they wheeled me to the operating room and started the C-section. Ben sat above my head and could reach out to touch me but it was weird going through that without him holding my hand and being much closer. During the procedure, Dr. Drewes asked about getting my tubes tied and Ben answered no, to which I chimed in with "I've been through enough, it's his turn". The whole room laughed. Now earlier in the week, the doctors had told us that they could rush me to the operating room and have her out in 5 minutes, if her heart rate dropped and didn't come back up. Well as Dr. Drewes opened my uterus, baby girl popped her arm out. He then had to keep pushing her arm back in as he tried to find either her head or feet to deliver her. He had to give me an extra incision to give him more space to get her out. I had absolutely no water left and because of that, she was tightly wedged. After 15 minutes, Dr. finally delivered her at 7:30 AM and told us it was a good thing we didn't wait for a more emergent situation because if she had been crashing when they did the C-section she could have been without oxygen for a long time and who knows what the outcome would have been at that point. I just know that I felt completely tossed around and like my pelvis was being ripped in two and the doctor said it was one of the hardest C-sections he'd done in a long time. I'm so grateful that Ben made a stand and urgently requested that she be delivered soon because we just don't know what could have happened. Once she was out, they handed her off through a window to the NICU team and Ben was able to go with her at that point. I laid there a while longer, dozing in and out. My blood pressure dipped again and it made me throw up again right as they were finishing up the stapling. Then I was given morphine and moved to another bed and taken back to my room. Ben met me there and laughed at my morphine induced state. I was pretty out of it for about an hour. After that hour, it was time to move me to my recovery room. On the way, we took a detour through the NICU and I got to see my baby girl for the first time. She was so tiny and had a few tubes and wires attached in and to her. It was kind of scary but I felt such relief knowing she was at last born and being so well taken care of.

End of School 2016

Wow! Our life has been super crazy the past 4 months. Bare with me as I try to play catch up and record every detail.

The kids last day of school was May 27th. I can't believe how grown up they all look. This was a pretty interesting school year with Stryder in Jr. High and the other 2 still at the elementary school. Stryder loved some of his classes but struggled in a few as well. He made so many friends though, he was super sad when summer was starting. Shelby was ready for summer but I think she was looking forward to starting 6th grade too. Shelby and Soren both had great teachers that made school so special for them. But Soren was really ready for summer. Heck I was really ready for summer.

My beautiful girl is turning into a woman. She got glasses over the school year and grew her hair several inches. I'm pretty proud of the incredibly talented young woman she is developing into.

Soren lost some of that baby look to his face. It makes me kind of sad. Soren is trying really hard to be a great helper but sometimes he still just wants to play and pretend he's still the baby in the family. But I'm excited to see him continue to grow and take on more responsibility.

This young man is exceptional. He is always the first one there when we need help and he's always willing to help. I don't know how I would have survived without him this past summer. Stryder is one of my heroes and I sure am grateful he's mine.