Author: letterstoholland

Hello Baby, We love you and are so proud of you. You are beautiful. You are the best thing I’ve ever had. Today was a mixture or fear, love, and hope. The first of the two big events was that one of our favorite nurses Jenn while discussing procedures and expectations, which she always is great about, explained that we can hold you soon. We will not be able to hold you like most might think of, but still super cool. Mommy or I can lay down on a bed during a touch time and the nurses will lift you up off your bed, scoot your bed off to the side and scoot one of us  under you then lay you back down on top of us. We will then basically be your bed until next touch time 4 hours later. The thought of this immediately excited Mom enough to ask for it right now. Mommy was ready, I was scared. Turns out I like your bed and your box. They make me feel like you are safe and protected from germs and the world. I guess we have to let you sooner or later. So we have scheduled this for early next week given things stay on the same positive track. I finally came around and I am now pretty excited too.

Today your chest X-ray came back looking like you may have the beginnings of a respiratory infection.  The doctors had also been concerned with the slower rate of weening of oxygen and ventilator settings you’ve experienced lately. You have been stable, but not making much progress. The combination of these two factors is a little scary and the doctors immediately started you on antibiotics. We have another chest X-ray scheduled tomorrow to see the progression or regression of the possible infection.  As the day moved on your ventilator settings and oxygen percentage needed increasing. It looks like the doctors  may have been right. Infections can turn bad quick in babies your size. I had been so optimistic the last few days I almost forgot what great risks still linger. This is a  reminder of reality. We must be thankful for every moment you are here. It could all end at any moment. We still believe in you and have faith in your team of medical professionals, but we also are more aware of our reality. You are fragile, very fragile. You are also strong though, very strong. You have many who love and support you, and all who spend time with you cherish it. We love you and you make us proud.

 

Hello Baby,

You had another great day! You are the best!! We all love you. Your echo came back and the medicine worked and your heart is all healed up. Every day you amaze us and impress us. Daddy had to work at the fire station again, and I found it even easier than last time to spend the day involved and focused on work. Other than waiting on your result and thinking about it, I was able to trust that you are in great hands and they would alert me if anything went wrong.

After my shift I bumped into my friend Ashlea in the NICU, who is an occupational therapist doctor or something. I am sure I am not giving her proper professional credentials but whatever you are 13 days old. She talked to me about what type of stuff to start thinking about as far as occupational therapy. Turns out I was clueless. I talked to her about how you are always trying to fuss and fight your tubes and wires and diaper changes. She says ” a little scrappy is good around here.” That made me smile. I like the nickname Lil’ Scrappy.” I doubt mom will. I think it embodies you fighter spirit. So keep on scrappin Lil’ Scrappy. You make us proud. We love you!

Hey Baby, We love you. You had another great day today. You got you final doses of your heart medicine. So tomorrow we should get an echo and the results will show us whether the medicine helped fix your heart or not. So tomorrow will be a big day for us. As for today, its really just the 24 hr wait between your final dose and your echo. It was just a day of staff adjusting your machines and you growing stronger. You are doing so well.Mommy, Nana and I all visited you yesterday. You are growing. You are up to 1 lb 7 oz now. That’s up almost 50% from your lowest weight. It makes me so happy.

This evening  came bearing bad news for daddy. I lost one of my dearest childhood friends. I loved him and this hurts. I know you won’t make it through life without experiencing this pain. Jason and I growing up spent as much time together as possible. I haven’t meet anyone who has brought more laughter and joy in each moment to those around him than Jason. We would stay up for days laughing and goofing off, until our parents were forced to separate us for our own well being. He always wanted to give everyone around him the good feeling of laughter. He and I drifted away over the last 20 years. We would bump into each other every few years and promise to schedule time to catch up. It never happened or at least not often enough. Just 9 days ago we had a little comment conversation on Facebook. I thought to reach out again, but then figured I was too busy and could probably find a more convenient time in a few weeks. Well that time never came. I lost the opportunity to ever talk with him again. A more convenient time never comes. Every day comes with new stuff that gets in the way. A few weeks is always just as busy. So I hope you prioritize friends, relationships, and the investment of time in them. The best investment, the most important thing you can do is to give time; time to listen and time to share. You never know when you will be out of time, so cherish it,and use it for relationships, and use it for love.

We love you and you make us proud. Let’s hope tomorrow’s results bring good news and if not we will fight our way through it.

Hello Baby, You had another great day today. It was a good first Valentine’s Day. The doctors started you on your first dose of the heart medicine yesterday. They checked your blood this morning to see how you responded and to check to make sure you can receive your second dose. You passed with flying colors and got your next dose. Good job baby girl. The doctors are impressed and happy with your progress, so am I. My emotion blob still worries that all this good news is about to be counteracted with upcoming bad news. Good thing my brain tells my blob that’s stupid. The respiratory therapists keep adjusting your your new ventilator and are really doing a great job of balancing keeping you healthy and teaching your body to take care of itself. It’s been fun watching them. So, this evening the doctors will recheck your blood and hopefully give you your third and final dose of the heart medicine. Then in the next day or two they will give you a new echo-cardiogram to check your progress. This seems like the next big hurdle.

Pastor Lori, Uncle Eric and Aunt Erin came to see you today. They all love you. Your Nana, Grandma(Gam-Gam) lol, and Mommy all got you Valentine’s Days gifts. I didn’t get you one, but I doubt you will notice. You know I love you though.  Grandma cooked  Valentine’s Day dinner for Mommy and I. It was delicious and a nice treat for us. She has been very helpful. All of our family and friends have been.

We all love you an can’t wait to hold you. You are getting bigger each day and make us so proud. I feel like this is all going by so fast. Part of me feels great about that because in a moment we will be holding you and taking you home. I’m also sad because I love you just how you are right now and this feels special. I love touching you and changing your diapers. This world loves  you especially your family. Hang in there, keep fighting and you will be driving and dating in no time. Love you.

Hello Baby, We love you.

You had another great day today. Your 2nd echo-cardiogram came and showed the minor problem with your heart has not been repaired by itself, as we had hoped. So your doctors decided to start you on a medicine that will repair the problem on 80% of preemies with it. Lets hope you fall in that 80%, otherwise you may need heart surgery. I can’t imagine how hard it would be on your 1 lb 4 oz body to have heart surgery. So we are a little nervous, but the doctors don’t seem too worried so that helps. I guess this is pretty common among babies your size. We should know with in a day or two if the medicine is helping. You have not liked your ventilator tube today. You pulled it out or spit it out twice. The nurses stayed calm and reinserted a new tube each time. Your newest seems to be your favorite. They have been able to turn down your oxygen further than anytime so far with this one. They took another x-ray to check your pic line placement. It is up in your neck instead of by your heart. So the nurses are planning on adjusting it soon. Your staff is so amazing. All of these procedures seem so impossible and they keep doing them like its nothing. The amount of talented people here working on you is incredible. We are so thankful.

I had to start back at work today. I was able to go to morning rounds and then I headed to the fire station. It was nice to be back, yet you were never not in my thoughts. I am thankful to have such a great place to work. This was my longest time away from you since you entered this world. I was able to handle it better than I expected. Just because I am away doesn’t mean I don’t love you. I went to work to love you better. I don’t think that’s always easy for children to understand. Mom and I love you. We hope you have  another great day. I miss you and look forward to going to see you right after work.

Hello Baby, We love you. You had another great day. Today was Sunday. They don’t have morning rounds on Sundays because the same doctor generally works all weekend. So, Mom and I slept in. It was glorious. We both needed it. We came in at 11 am touch time and rested in the Ronald McDonald House most of the day other than touch times and a few small errands. I ate all my meals for free in the house. A church from Ash Grove cooked dinner and dessert. It was very good. We kept it low key and relaxed all day. We got to spend some quality time at home in the evening with your big sister. She sends her love.

Your chest X-ray came back completely clear. You have adjusted very well to your new ventilator. You had great nurses all day. They all took care of you well and bragged about how well you are doing. You are so strong. We don’t know of any new test coming up, just standard stuff and watching you grow. You had the poopiest diaper I’ve seen yet. It was a mess, so much so I needed 3 wipes. I expect you to weigh in a little light tomorrow.

One of our dear friends made valentines cookies to give to your staff. The card says its from you but I think they know someone else baked them. Also, the other day my friend and ex roommate Betsy made drew you a picture of her and the outdoors. She says she loves you and wanted you to know what the world looked like outside your room. You are adorable and I can tell you are growing. We love you and you make us proud.

Hey Baby,

We love you! You had another great day. We love every moment with you. You got your new ventilator today! I think you love it. You had partially collapsed lungs and blockages on both sides showing up on your chest x-ray. So the Dr swapped your ventilator out from a conventional big breath in- big breath out style to a new kind that gives you smaller puffs while still expanding and contracting your lungs. It looks less comfortable, but you’ve responded well. The amount of oxygen you need has been cut in half in a day. Your x-ray is also showing small improvements. Small improvements on such a small girl can really make all the difference. The Dr seems pleased with your improvements as well as your overall state right now. So the days are piling up, and you are getting stronger by the minute. Your mother and I are comforted daily by the staff in the NICU.

Your mother and I checked in to the Ronald McDonald House. It is a wonderful place. We got a tour and signed some paper work and I took a nap. Naps there make me happy. All naps do but these are extra special. It feels like my home and yet its just a floor away from your room. We have a refrigerator, laundry, showers, a full kitchen, dining room and living room anytime we need it.They also provide many snacks and small meals throughout the day and a big dinner provided and served by volunteers. All this is the most wonderful gift given to us here. Comfort, relaxation space, and nourishment all so we can be better for you.

So your Uncle Corey drove up from and back to Dallas today. It was my proudest moment yet introducing you two. Corey and his wife Sarah have three of the most beautiful children that I have the honor to call nieces and nephews. I have always loved them so much , and have always been extremely happy for my brother to have such a wonderful family. Having him here to  show off my beautiful  family for the first time was a joy I won’t ever forget. He was immediately in love with you too. I knew how he felt, the same joy for me I had felt for him. I was proud and thankful and so was he. He thinks you are left handed because you kept kicking around your left foot, almost trying to capture his attention and introduce yourself.

My brother and I are only 20 months apart. Our relationship growing up, as with most brothers, was a mixture of allies and adversaries, best friends and annoying roommates. He was my role model and I was his little tag along. We fought hard. I had no line I wouldn’t cross in fights; he did. He protected me while simultaneously beating the crap out of me. We were brothers. I learned the importance of financial responsibility. His frugality still makes me laugh. My shaggy headed big brother reminds me that sometimes a haircut is a want and not a need. He showed me you can drive a turd and still be cool.

You are blessed with your older sister Rowan. Love her and learn from her. Remember that even when you hate her, you love her. You won’t have a closer ally. Learn from her victories and defeats. Give her a little space when she needs it but always stay close. Blood is thicker than water and you only have one family and yours is a good one. Cherish it.

We love you and can’t wait for another day with you.

Hello Baby,

You did great today. We love you and you make us proud. Thank you for being such a fighter. Today is the day of your head ultrasound. Your mom and I, after a good night’s rest, showed up a little before 9 for morning rounds. Immediately we asked the nurses when your ultrasound was scheduled. They said it had happened two hours ago, but the results were not back yet. The stress and worry continued. We felt so anxious. They also informed us that they scheduled an echocardiogram to look at your heart. This was also scary, as we didn’t know it was coming. We were as nervous as I could remember. We just tried to keep remembering Dr. Vish’s statements that there will be ups and downs.

Your mom and I decided to wait out in the lounge area to be near when your results were back. I had one of my dearest friends JD scheduled to meet you at 11 am touch time. He showed up a little early, and we were able to catch up and laugh over coffee. It’s always a great little break from the grind to just sit with a friend. Conversation can be healing and give relief, especially among loved ones. JD immediately saw your beauty; often, it’s hard to see past the tubes and wires and your fragile tiny body at first. JD has a young daughter too, so I think that helped him see you as my daughter and nothing else. I could see in him excitement and joy for me. He was proud, too.

At your 3pm touch time the staff informed us that your ultrasound came back clear! Your mother and I felt our nerves and burdens melt into relief. It was joyous, while in the back of our minds, the fear of the echocardiogram results lingered. We are becoming experts in feeling multiple emotions at once. None of this is remotely simple at this point in your journey. It is always concern and relief, joy and fear. It’s just a big blob. An emotion blob. That’s how I am gonna answer questions of how I’m doing: “emotion blob.” I’ve never been one to reflect on my emotions, but I am seeing that beginning to change.

So you also had a chest X-ray that showed concerning spots in both lungs. It looks like parts of both lungs are having trouble opening. This is also why the oxygen percentage you need in your lungs has tripled in just a couple days. The doctors have planned to change your ventilator, and they seem calm, like this was almost expected. The important thing is how you respond to your new machine. We will know more tomorrow. We don’t care what machine you’re on, as long as we’re able to keep you going until you can do it on your own.

Mom and I decided we could skip 7pm touch time to share a meal with our friends Lindsey and Cait. Turns out, it was just what mom and I needed. We laughed and laughed and enjoyed good food and watched them with their 3-month old, Brynn. Giant baby, at least compared to you. Time with loved ones is precious. I know I keep saying that, but it’s true. Build relationships. Step out of your comfort zone, reach out. Be vulnerable. Share true self. Grow your group of loved ones. It will save you someday. Your mom is finally learning this lesson, too.

We arrived at home exhausted again. We laid in bed and enjoyed milkshakes. Peanut butter, our favorites. We are gaining weight. Whatever. We will work it off later. We got a great call that we were accepted to Ronald McDonald house and we can just check in tomorrow. That’s a relief. They will be a great help. When you get older and have a job, you should donate to them. They are helping us when we are most in need.

We also got a phone call regarding the results of your echo. Not great news. You have a small hole somewhere in or around your heart. Not sure, I didn’t catch it all. the doctors say it isn’t uncommon, and it very well may heal on its own, but it also may not. Time will tell, but they didn’t seem particularly concerned by it, and as of now, there are no changes in your plan of care. Emotion blob.

We love you and are thankful for another great day of having you in our lives. You turn 1 week old tomorrow. Mom and I plan to share cake in bed in your honor.

Hello baby, We love you. We are so proud. Today was our first day starting from home. We slept in our bed and that helped Mommy and me tremendously. We started the day well rested; turns out, we needed our rest. It was tough getting big sis to daycare and making it to rounds on time, but we did it! Rowan was great this morning. She constantly reminds everyone of her new big sister status. It’s pretty adorable. She went to daycare and had a good day. We went to rounds and things were good. All of your stats were going as usual, and you were showing your strength. Afterwards, mom and I shared breakfast at the cafeteria and met with a child life specialist from the hospital. She was extremely helpful and gave great advice on helping Rowan adjust. Rowan’s life has been a little turned upside down from mom’s 10 day hospital stay and all the attention we want to give you. She is showing her strength and adjusting well, too. Mom had an appointment across town and I met a coworker and long time friend to talk with and introduce to you. He is a father of three and it helped discussing fatherhood and all its glory and struggles. Mom’s appointment ran long and she was late for 11 touch time and had to miss it. She was a little frustrated and I felt bad for it. We also forgot pumping supplies at home and had to drive home immediately after touch time. We warmed up leftovers and I stared at the ceiling, already exhausted from the day. Mom pumped away. I told her I had a headache and needed to lay down for a nap. She took time to clean and fold laundry and run errands. I overslept for 3 o’clock touch time. She made it. We met at home and she started pumping and I needed to run errands and get dinner stuff. She didn’t have time to rest, even though she desperately needed it.  After all, she is still recovering from major surgery, AND woke up at 530 am to pump and start getting ready for the day. She needed to pick up Ro from daycare, pump, and get back to her mom’s for the dinner I still needed to buy for and prepare. We finally asked Judson to pick you up and meet us there. I forgot to run my errands and just bought dinner. I started cooking pizzas and, after the first one, needed grandma to finish them so Mom and I could get to your 7:00 pm touch time. We had to leave before Judson and Rowan made it over.

Touch time was great.Your nurse told us that your blood oxygen stats had been falling steadily throughout the day and they had to turn you ventilator oxygen up a lot over the day. We also remembered tomorrow your first head ultrasound was scheduled to look for a brain bleed. This is a huge deal. Many babies your size have brain bleeds in the first week. The babies who make it through the first 7 – 10 days without one, though, are at a much lower risk for ever developing one. They can cause all sorts of developmental problems and even be life threatening. We are both frightened and anxious  for the results. During touch time you looked at us again with both eyes and we melted. Mom couldn’t stop crying, she was so happy. It was beautiful and totally lifted our spirits after an exhausting day and a little tough news. We headed back to grandmas to spend what little time we had left with Rowan. There, Judson and Rowan and grandma waited and we had a great time. We ate a little left over pizza. Mom was so tired I was concerned letting her drive home. So we left my car there, asked grandma to keep big sis overnight, and headed home.

Mom and I laid in bed exhausted staring at the ceiling. We both knew right then there was no chance to go through this without help. Day one from home and we both had no energy left. Nothing. We were empty of emotion, zombies. All along we have had crowds of people and organizations offering help and we replied thank you but we are alright. I think that was out of habit and pride. We can’t do this alone. We know that now. So we planned for the next day to talk with social workers, march of dimes, Ronald McDonald house and close friends and family to the help we need.

I feel bad we didn’t accept the help earlier. We would have done better for you and Rowan today if we had. So, please remember people love you and want to help. Know its a privilege to help loved ones in need. Don’t let ego or cliche answers of “we are fine, thanks” to ever get in the way of accepting love. We all need it. Everyone does. Humanity, community, and family are special and amazing. Use them. Accept love. Mom and Dad love you and you make us proud. I hope your brain ultrasound goes well tomorrow.

Hello baby,

You had another great day. We are so proud. We made it down to see you at 7 am touch time. You amazed us again. Your mom and I were both on your right side as a nurse was on your  left. We were both saying our good morning I love you to you, when out of nowhere we could see you move your head slightly toward us and try to open your eyes. With a little straining you opened you left eye half way. You were looking right at us. Your eyelids were fused together before this and it totally surprised us both. We weren’t expecting it and it immediately threw mom and I in to a fit of elation. It was the best moment either of us have had yet. It was so special to both of us that you looked at us and clearly had recognized our voices. Your first glimpse into this beautiful world. You will see so much in your lifetime. This world is full of beauty and colors, joy and pain, love and hate. Its a confusing place at times, but no one sees this world more clearly than children. The excitement from seeing trees, grass, snow, clouds, sunrises and sunsets fill children up while adults often run around staring at phones and watches. The beauty of this world can drift into the background in the hurry of life, school, work and responsibility. Stay calm, slow down and enjoy the beauty. Walk, don’t run. The beauty in this world is the creation God has given us, not the man made timelines, bridges and buildings. His greatest beauty is us. Humanity. Love and appreciate it all. Its always a struggle to focus on it, but something like seeing your child’s eyes for the first time is a moment that clarifies so much.

We had other great stuff today. We learned you were drinking mom’s milk today. The joy on Mom’s face when she heard that was awesome to see. She loved it. She is always pumping. It looks painful and definitely time consuming. She loves providing for you. I brought Kathy’s husband by to see you today. He was amazed by you and shared his love. He cant wait to show you his rock collection and pictures he has of himself. He reminded me of how seeing me being a new father reminded him of his first fatherhood moments too. Everything changes in a moment.

The nurses told us you may have had a seizure last night. That really scared us, but it happens to lots of preemies.We both focused on handling that as well as possible. About lunch time you had a spinal tap and the procedure took about an hour. The nurses said you did great. It was one of their easiest taps they remember. They are checking for meningitis. The result will be back tomorrow.

Mom got discharged from the hospital today! We are both very happy and excited to spend a night in our bed. We still come see you a lot. This evening we brought big sister Rowan to come see you. She was telling everyone one we saw she is a big sister. She and Grandma made a picture for your room. It has lots of stickers. That means a lot because she loves her stickers. We can’t wait to see more of you two together. She is proud of you and loves you. She promised to teach you how to climb on her bed and how to play with toys. We brought Daddy’s good friend Wes to see you too. He loved you immediately. He is one of dad’s favorite people. He is extremely kind and smart. He helped entertain Rowan while mommy changed your diaper. I got a picture with you and Wes. He is the tallest person I know and you are the smallest. It was cool.

Thank you baby for another great day of parenthood. Your mom and I are grateful for every second with you.