Letters to Holland

Hello Baby, You had another great day. You gained 50 grams and are up to 2 lbs 7 oz. Way to go girl. The doctors also decided to up your feed amounts by 1 ml. It doesn’t sound like much but it is a 5% increase. Not that long ago you weren’t able to finish the 20 ml feeds without spitting it up,  so this is good. Your oxygen needs were weaned down a little overnight to 24%. This is with the recently lowered pressure as well. So you were on 24% previously but whenever they change your settings down then they bump your oxygen.

You had some visitors today! My friends Adam and Courtney came by to see you. They both enjoyed it. Adam had met you before and called you neat and made a reference to Benjamin Button because you were tiny and wrinkly. This time he said you look like a real baby. I am pretty sure they both thought you were beautiful. I held you so I had to take my shirt off in front of them. They didn’t seem to mind, and I know you like it.

We had been given a crotchet octopus to give to you. So we had to get it approved by your doctors which to some adjusting. We had to have it cleaned by the NICU. We then decided to take it home to sleep with us one night before we gave it to you. That way you could smell us and your home. So, Rowan found it in our bed and started playing with it. No big deal. Until she shoved it in the back of her panties and ran around the house with a new “tail.”  Good thing this was hilarious, because the amount of hoops we had to jump through to get this ready for you had been undone in a second. In one dousing of big sis butt germs the fate of your first toy animal sleeping companion was uncertain. After discussing it with your medical team they were okay with laundering at home with preemie friendly detergent and then brought in to give to you. So crisis averted and tomorrow you meet your new friend. We love you and you make us happy.

 

Hello Baby, you had another great day today. It was extremely uneventful, which we all like around here. You basically got a day older and a day stronger.  Your vent pressure got lowered by just one. That isn’t because you aren’t adapting well, but because the doctors don’t want to upset anything while you are on your lung steroids. I guess you will respond better if there isn’t extra stress on you. You were stable on weight with just a minimal loss. Everything else is great. We love you bunches. Keep up the good work, you are making us so proud.

Hello Baby, you had another great day. I got to hold you around lunchtime. We both enjoyed our time together. You used it to sleep deeply and drool on me. You were out of it. You were able to suck on your pacifier for a long while then you went straight comatose. Your heart rate stayed way low and oxygen high. I could tell you were groggy when our time was up. You did wake up finally and were happy to interact with mommy. Your eyes were so open and you just engage with us on a deeper level lately. I seriously think you smiled at us the other day. It may be me imagining things, but I loved it anyways. All your new noises, you loving your pacifier, and the eye contact you make with us make it feel like you aren’t even a preemie anymore. It feel so normal and  what I expect most parents experience with a newborn in their homes.

You just love your new vent. You are down to 24%  oxygen needs, room air is 21% so you have very little supplemental oxygen. You gained 60 grams and are up to 2 lb 6 oz. Your heart rate is constantly back down to your normal levels. You seem so comfortable and happy lately. You do pull out your feeding tube almost daily, so maybe its not your favorite, but you seem to always have your hand in your mouth now so it may just be kind of happening. The other night the nurses came in and saw you had pulled it out and swung it around and sprayed milk all over your bed. They said you were like doing a lasso thing  with your feeding tube. Maybe you were trying to get your pacifier from the other side of your bed. I don’t know. You need you food so maybe lay off for a bit cowgirl.We love you and you make us proud.

 

Hello Baby, you had a wonderful relaxing weekend. You just kept improving and feeling better each day. The weaning of your oxygen continued. You are down to 25% needs his morning. I think they may switch you to the next step ventilator soon. It is a lot like a CPAP machine. You gained 20 grams each day this weekend. That seems good, but I bet the doctors hoped for a little more. You are now 2 lbs 4 oz. The doctors finally figured out what was giving you fits earlier. It was not withdraws, it was your breathing treatments. You were getting them every 4 hours and they have changed them to only when you sound wheezy, which is not often.  You sound really good on the new vent. Your lungs have just cleared up a lot lately. You are now weaning off your steroids and antibiotics. The doctors are happy with your progress, and so are we. Mommy held you and you loved it. You have also grown to love your pacifier. It is adorable to watch you with that little thing. We love you and you make us proud. Keep up the awesome work Baby.

Hello Baby, You had another great day. It didn’t start that well, but you stuck with it. You showed signs of discomfort all morning. You had elevated heart rate, you weren’t sleeping and just clearly not happy. The doctors started to get concerned and even talked of you having to go back on the previous ventilator. You just weren’t even sleeping very much. This was tough for Mommy and I. We felt you were pretty miserable, and it wasn’t easy seeing that.  You had so many changes in your care the last two days it was hard to pinpoint what was causing the problem. The vent tube came out, and with it they discontinued morphine and versed. They also started you on new steroids and antibiotics recently. They tried giving you versed  and that did nothing. Then they gave you morphine, and for the first hour and a half had no real changes. This is just at the time Mommy held you and you calmed down, your heart rate lowered to normal and you slept peacefully in moms arms. Whether this was the morphine or Mommy’s touch you were once again a happy baby. This really calmed us down as well.

You had a big group of new visitors today!!!!  Your Aunt Jana and her three daughters Amy, Amber, and Sarah came from Kansas City to see you. I could tell you liked them. As soon as you heard their voices you had to know what was going on. You couldn’t keep your eyes off them. I felt like it was your first time hanging with the girls, girls night out style. They took turns touching you and I’m pretty sure everyone involved had a blast. They loved you and you loved them. I am excited for you to grow up with such a fun group of girls to grow close to. I also thought about how I hope you and Rowan have as much fun with each other  as these sisters clearly do. Mommy’s side of the family is completely awesome, and I am sure you will grow up having a blast with them. We all went out after holding time to watch basketball and get to know each other. It was fun, exciting and interesting.

You had a great evening and stayed calm. You gained 20 grams and they were able to wean you way down on oxygen.  All in all it was a stressful day, but ended well. You slept well and so did we. We love you and you make us proud.

Hello Baby, You had another great day. It was your first full day without the breathing tube in.  You still have your feeding tube in, which you apparently also want gone, because you pulled it out overnight. That will have to wait. You have been restless all day. Your heart rate has been elevated to around 200 up from 175 ish usually. The doctors weren’t for sure why, but didn’t seem too worried. It bothered me because I could see clearly you weren’t resting as easily. The doctors checked your caffeine levels to confirm you were getting appropriate levels. You were getting the right amount. The breathing treatments they have been giving you since the tube came out can also raise heart rate in some babies. Also, when the tube comes out they stop giving you morphine. I imagine, stopping that can make a person cranky. You are also breathing differently than you ever have before, that can take some getting used to. All of these factors have probably contributed to your restlessness and increased heart rate. Hopefully, things will settle down tomorrow and you can rest easier.

During rounds the doctors were happy with your progress, but also stated you are still small even for your gestational age. With the lung steroids coming now that stinks because they can slow your growth. Last time you were on them you didn’t gain weight for the better part of a week. Yesterday you were stable and today you lost 30 grams and are back to 2 lb 2 oz. Good news is the nurses told us you can be held twice a day now. That’s good because mommy and daddy don’t have to fight over who gets to anymore.

Lindsey and Cait, our close friends got to  see you last night. You got a heel prick to draw blood and Lindsey got to hold your hand and comfort you during it.  You enjoy it, but not as much as her. The both love you and can’t wait for you to come home and become friends with their daughter Brynn. We love you bunches and you make us proud. Keep on growing and fighting.

Hello Baby, you had another great day today. I had to work and Mommy was still fighting her cold. So I came to rounds in the morning then went to work. At rounds, the doctors stated they thought you were ready for steroids and were hoping to ween you aggressively down on your vent and hopefully take the tube out of your lungs and switch you to a new vent. The p lan was to push and see what you could handle and hopefully in the next few days switch over vents. Well they started with steroids and immediately started weaning. I headed to work and expected to not miss much, with hopes of spending lots of time with you starting tomorrow after my shift. I wanted to be there when they  extubated you, so I could hear you. With the tube in your lungs going through your vocal cords, you can’t make noise besides the occasional fart.  I haven’t ever heard you make a peep. I really looked forward to hearing you squeak and try to cry. Well Nana came to visit you in the early evening and they had just switched you over. I am pleased you had family there with you.

When Mommy heard the news, she cleaned up all the germs and headed that way. She held back from touching you and had to wear a mask, but she got to hear you for the first time. I considered leaving work, but decided to stick it out and come see you in the morning.

The other really cool thing about not having a tube in your mouth is that your face isn’t all covered up with tape holding your tube. So we all got to see more of your beautiful face. Mommy told me she thinks you look like me. I like to hear it. It makes me proud, but for your benefit let’s hope as you age you resemble your mother more and more.

I was super excited to head to the hospital in the morning. When I arrived I shot right in past the nurses to see you. You looked as beautiful as possible. I was so happy to see more of your face.  I was so amazed, I forgot anything about the noises, when all of a sudden you did this little hiccup squeak thing and I was shocked. It took my breath away, literally I was speechless. I held my heart and probably my breath awaiting the next peep,  you had my full attention. There it was, another little coo or cheep or something. I don’t know what to call it other awesome. I loved it.

You are so big and overcoming so many obstacles and achieving new milestones so quickly. You make us so proud and we love you so much.

Hello Baby! You had another great day. First thing in the morning the nurse staff were installing a pic line, which is like an IV but the end goes all the way up by your heart. It is a sterile procedure so I had to wait outside your room, but I could watch as they worked on you. They had to give you lots of sedatives to get calm enough to perform the procedure. After giving you a second dose it really started to work. The doctor said you were loose as a goose. I would agree with that assessment. So, you were really groggy throughout the day, you can even tell in the picture I took of you.  I think it took over 8 hours to really get you back to speed. Your vent settings needed to be up for most of the day. Gradually, they were able to ween you back down. I was unable to hold you due to your increased vent settings, but I’m not sure you would have really woken up enough to have realized I was holding you anyways. During rounds the doctors didn’t seem too concerned with your possible infection, I think because you sounded clear and your vent settings have been stable. They actually had been able to turn them down before your morning procedure. The discussion basically revolved around how much weight you needed to gain prior to giving you a dose of steroids for your lungs. The doctors seem very pleased with your progress.

In the evening the nurses weighed you again and you gained 70 grams. This is a new record for daily weight gain.  You are now up to 2 lb 3 oz. I am so impressed by you. Overnight they were able to turn down more vent settings. You are making good progress. We are so proud and you make us so happy. We love you dearly.

Hello Baby, you had another great day today. The doctors lowered some of your vent settings. The respiratory rate to 18 down from 20 and the pressure down 1 psi. Good steps forward. Your weight was stable which is not concerning because yesterday was your largest gain ever in a day by a long shot. We did find out news that your infection is more serious than your last as it is a strain of staph. It is a strain that responds to antibiotics so it could be much worse. They have changed your antibiotics from a broad  spectrum to one narrowed down to your infection type. We will continue to monitor, but the nurses already are saying you sound more clear in the lungs than a few days ago.

I got to hold you again today. I really had fun but you became a little restless and kind of threw up on me. No worries, it doesn’t bother me a bit. I’m pretty sure I heard you fart for the first time too. I can’t be sure because your vent makes some noises some time, but either way it was cute.  We love you and you make us proud.

 

Hello Baby, You had a great weekend. Mommy and Daddy saw you a lot on Saturday. We gave you a bath and mommy held you. There was a moment when Mommy was holding,  you had your eyes open and I was talking to you. You were lying on Mom’s chest and staring into my eyes. I was hoping that you experienced a family moment. You felt her and watched me, maybe you felt family for the first time. I was really walking on clouds after that, it made my day. We love you lots and can’t wait for more family moments.

You had another chest X-ray and the doctors told us it didn’t look great. So they ordered a tracheal aspirate culture to  test for infection. It started showing infection quickly. The doctors started you on antibiotics immediately. This is concerning but not scary. You’ve had this and conquered it before. Your oxygen requirements have crept back up since your infection started.

I had a full day of work on Sunday and was unable to even visit you. That made me sad, but on top of that Mommy was feeling cold symptoms and didn’t want to spread germs your way.  So, Mommy rested the majority of the day to try to prevent a bad sickness that would keep her out longer. She took her temp and didn’t have a fever, so she came up at 8 pm so that you would go a day without  a parent visit. She loved seeing you and talking to the night nurses, that we don’t get to know as well. They are also really fun and good at their jobs. The love you bunches. You are constantly surrounded by love.

You had a weigh-in that night and hit a huge milestone, 2 WHOLE POUNDS! Everyone has been quietly waiting for  this. It feels so good to hear.This may even be cause for celebration. Mom and I just were able to take a deep breath and relax a little. You still have a long road a head, but this feels wonderful. Seeing you regularly progress really makes the grind easier. You seem not to go more than a day or two without noticeable progress. You make us so proud. We love you so much. This adventure we are all on together is tough, but it is also beautiful. It’s like a long hike up a mountain, some times more grueling than others, sometimes you wonder if you are strong enough to make it, but ever so often there are the breaks when you sit and rest and gaze out on the beauty of God’s creation. You don’t get those moments unless you climb and grind through the tough spots. Or at least they don’t feel the same. Today felt like a scenic rest stop. We thought about how far we’ve come, how far we still have to go, but most of all we enjoyed the beauty, your beauty. We recharged our batteries and are ready again to start climbing. Can’t wait to get to the summit with you babe. It’s been fun.