Letters to Holland

 Hey Baby, you had another great day! The scales show you gained 97 g, but I don’t believe it. You may have had a big gain, but I doubt that much. We will see when you weigh in tomorrow, I would bet that you lose weight or at best are stable. That is like the weight of three good days in one night. You continued bottle feeds today. You ended up taking a third of your daily feed by bottle, which is incredible. The staff doesn’t wake you for a bottle, so you slept through  few feedings. You even took an entire bottle in the evening. Your Nana was there to see you! I think you were trying to show off. Everything really went well today. You basically slept and ate and occasionally pooped. You are living the baby life, and living it well. Keep up the great work. The NICU ban on children under 14 has been lifted since flu cases are down enough in the county. So big Sis will be by soon! It has been months since she has been able to see you. She talks about you all the time and can’t wait to come visit! You make us all very proud and we love you bunches.

Hello Baby, You had another great day.  It will surely go down as one of our favorite memories of our time here. You got your first try at eating from a bottle. So, Mom was here, I was stuck at work, but got videos and lots of pictures.  We also had the occupational therapy staff here to watch and help.  You have been getting up to 3 ml of formula at each taste session. Well you must have saved up loads of energy, because you eagerly took 23 ml of formula. Your full feed is 36 ml, so you took 2/3 of you feeding. That really impressed everyone involved. Your doctors were even astonished when they heard how well you did. Everything you do is just above and beyond what we expect. I think your big bottle wore you out, because you slept through your feeding times for the next 12 hours.  We will be back at it early tomorrow though. We are all blown away by your achievements. You gained 18 g and now weigh in at 4 lbs 9 oz.  We love you bunches baby, keep up the great work!

Hello Baby, you had another great day! You gained 37 g and now weigh in at 4 lbs 8 oz. That’s huge baby! Your post eye surgery exam came back great and he said he was very pleased with what he saw. He will be back in a week to do a final check. You are still on 25 ml oxygen through your cannula.

The physical therapist gave you your first professional back massage. She also taught me how to do it. This will be something you start getting multiple times a week. You definitely enjoyed it. You became totally relaxed, like a little noodle. It was really fun to watch. The staff decided to up the amount of your tastes to see if you could handle it. They now give you up to 3 ml of formula. So far, you can have it no problem. This really points to you getting a bottle soon. You get a total of 34 ml per feed and can handle 3 ml tastes. So you take about 10% of your food orally. Hopefully this progresses upwards over the next few days and weeks. Since, this is the last major step of your development required before discharge we are really anxious to see your growth. At minimum you would need 80% of feeds by bottle before discharge. The possibility of discharge by your May 22, due date seems more and more possible each passing day. We are completely impressed by your growth and development. It is pretty incredible. The nurse told me that your temperament is pretty outstanding and outside of the norm. You have been through an incredible amount of discomfort these 12 weeks or so and still seem to be pretty peaceful and content. Your rarely cry even during painful treatments. You have the right attitude and I know that helps you and us a lot. So, thanks for being so awesome. We love you more than you can understand. Keep up the great work and we will brig you home in no time.

Hello Baby, you had another great day! You gained another 36 g and now weigh in at 4 lbs  7 oz. You are doing great in the gaining department. You are still on 25 ml oxygen through the cannula. I really don’t think you need that at all, but the Drs have decided to keep it for now. They know best and I completely trust them.  Your tasting of formula has really gone well lately. You took 2 ml with mommy and multiple times over 1 ml with nurses. I wasn’t as lucky, I spilled most of yours and then you weren’t happy with me. I kind of almost drowned you in formula. Sorry.

Overall it was a great day. We all had some good holding times with you, you slept well, and seemed happy and comfortable. We love you and enjoy watching you grow.

Hello Baby, you had a wonderful weekend. You have fully recovered from your surgery. You are back to sleeping comfortably, and waking up happily. You have put back all the weight you lost back on plus some.  You now weigh in at 4 lbs 5 oz, you are over 11 weeks old and gestational age of 36 weeks. It is amazing to think you have been out in the world for 11 weeks and that you sill weren’t supposed to be here even for another month. You are so mature for your age, lol. You are back on tastes now, so that is fun. We all really had a busy weekend. You had new visitors this weekend. Rusty and Julie got to meet you. They have been so influential in my life, and I really enjoyed introducing you guys. You liked them immediately. You were wide awake and kept staring at them and even smiled at them.  Your Nana held you too, and of course you both loved that as always. Mommy and Daddy also got some good holding time in. We all really had fun.

Daddy had a busy weekend. I had to work all day Sunday and didn’t get to see you. I also went to a funeral this weekend. It really hurt to see another family that I truly care about have to go through with their loss. They have been caring for their child in a hospital too, actually for much longer then we have. Life is hard to understand sometimes, Baby. I am sure you will find yourself confused often by how this world works. That’s okay though. Nobody really gets it, we are just all trying to do our best, and that is good enough. It seems unfair to me, that I was here holding you in the morning holding you, a beautiful time full of joy, and then had to rush across town to be with a family dealing with an unimaginable amount of pain and loss. It makes no sense, it’s not fair, its confusing. We all will experience joyous moments and moments of despair and pain. We don’t usually deserve either. So be extremely thankful, and cherish your joy. It is a gift. A gift, a blessing, you may not deserve it, but you get it. Be thankful Baby. Always. When you feel pain, and loss, fight through it. There is joy and peace on the other side. You may not be able to see it or believe it’s coming but it is. Stay strong, grow and learn from it. You will surely have more ups than downs in this world, but stay thankful and strong throughout. There is enough love in this world to go around. You are loved.

 

Hello Baby, You had a good day today. You are clearly feeling better and that really eases your mother and I. You sleep peacefully now and don’t cry much. Overnight you seemed calm as well. The whole surgery ordeal led to you losing a few ounces and now you are back under 4 lbs. That’s now big deal though. You will be back up soon. The doctors are considering asking for an ear, nose and throat doctor to perform a scope to see exactly what is causing your  stridor. It has improved, but not gone away. Hopefully it is just a little swelling caused by irritation from your tube. If you significantly improve they may be skipping it anyways. I got to hold you again early this morning and it was clear you were well rested unlike the day before. You seemed a lot more interested in your surroundings and enjoying a little hang out session with Dad, instead of an immediate zonk out. Seeing you clearly feeling better lifts everyone’s spirits, even your nurses seemed much more perky today. You bring a little sunshine to everyone’s day. We love you and you make us so proud and happy. Get well soon dear.

 

Hello Baby, you had probably the most difficult day we’ve had so far. It at least feels that way. You have definitely been through worse, but this feels like a step backwards. Your surgery went as expected. You were intubated about 5 pm for your 8 pm surgery. The surgery lasted 2 hours. The eye doctor said it went well and he is confident it will work. You did not enjoy your tube back in your lungs. You had to stay on it for about 23 hours. The sedation medicine you required for surgery kept you sluggish for a while. Your heart rate and breathing were really all over the place for a long time. You were clearly as uncomfortable as I can remember seeing you.  I think you are more expressive now and also know what its like to be comfortable. You had lots of secretions from having the tube and fought with it so much the staff was forced to take it out. When they did you clearly had a sore throat and loud stridor, which is a loud high-pitched noise made when you breathe in and out. We could ear you breathe from the hallway outside your room. The doctors started giving you medicine to help, but it didn’t seem to make things better. Mommy came up to see you and started bawling when she saw you in such an uncomfortable state. So she stayed and held you late into the night. It was really hard to see you like this. We know it was the right choice, as it’s a small price to pay to not go blind, but it hurts just the same. You have been through so much already watching this just made us each feel so bad for you and we wanted to comfort you in any way possible. I came up the next morning hoping to see improvement, and you till looked uncomfortable and still had loud stridor. Your eyes were basically swollen shut, and you would wake up only to cry yourself back to sleep. You did smile at me as soon as I started talking to you this morning. That made me feel better. I also immediately called in sick to work and decided to spend the day with you. I held you and it really made us each feel much better. Your stridor clearly improved. You still tried to cry every hour or so, but slept pretty peacefully in between. Your heart rate would drop by half every 2-3 minutes and you would not breathe for about 10 seconds then it would all return to normal for a bit. The nurses said it’s not uncommon and just signaling an unhappy baby. Mommy is coming in later as I return to work this evening. You are showing signs of improvement. I feel much better this afternoon than I did this morning. You have your cannula back in but don’t seem to need it. I feel like your lungs are now fine and you are just dealing with a very swollen and sore throat. We are both ready for you to be done with all of these tubes. You still have yet to sleep for more than a few hours without being poked or prodded. We are sorry that you’ve had this rough and bumpy life so far. We both promise to hold you a little longer and touch you a little softer when you get home.

Hello Baby, you had another great day. Grandma got to hold you for the first time!!!! You both absolutely loved it. You have two wonderful grandmothers who love you dearly. They both love holding you, and each cried their first time. You are a lucky girl to be brought in this world and immersed in a family full of such love. Mommy told me about how much she enjoyed watching her mom hold you. It was a great day for all of us.

The second half of the day was less great. Your eye exam was scheduled for noon. After the exam the eye doctor stated that your eye development problem had gotten worse. So, he recommended surgery within 24 hrs. They are worried that if the blood vessels in your retina continue to grow irregularly it will cause enough damage that some day your retinas would detach and would probably end in blindness. Retinas develop from the center out, so you have had very good development in the center, but as the development spreads out toward the edges you are showing irregularities. The doctor lasered  the end of the vessels to stop the growth that would cause future damage. So this procedure will not effect the majority of your vision. The believe over 90% of your vision will be unaffected. There will likely be diminished peripheral vision. So you will likely not have wide of a screen as most. The doctors don’t think this will cause life changes and should only  be slightly measurable.  So, all in all it is great this was caught early, because they were just a week or so short of not being able to stop the problem. We are very thankful for the eye doctor. He was extremely knowledgeable and kind. He clearly explained and answered all of our questions.

Prior to your surgery, to prepare for the sedation, nurses had to reintubate you, and return you to the full ventilator. Yes, the terrible tube is back into your lungs. This was really hard for Mommy and I to see. You have been so comfortable the last week it feels like a huge step backwards. We had only small steps forward it seems, never a step back. Now that you understand what its like to feel comfortable it hurts to watch you go through that pain again. It really set in just how much you’ve gone through, how strong you’ve been, and what progress you’ve made. We really hope you  can go back off the vent quickly. Overnight you needed it for sure. The settings weren’t really low either. As the sedative wears off hopefully  you will show less and less need for it. At least we know you are sleeping well with these pain meds and sedatives still in your system. We love you and already want to hold you again soon, You are so strong!

Hello Baby, you had another great day! You gained 45 grams and now weigh in at 4 lbs and 1 oz. You had no events that showed distress and your blood oxygen never dropped. So I expect to be taken back off the cannula tomorrow. We will see, that’s just my guess. You had some good bonding time with Mommy. She was able to hold you a bunch. You did very good on your tastings and took all of your 1 ml tastes about half the time and took part of it the other times. You seem to enjoy it, but also get a little confused at times. It is all good. You are still 5 weeks from when you were supposed to arrive so you are way ahead of the game. You even started sucking your thumb yesterday. Mommy says it was adorable. I am still waiting to see it for the first time. Tomorrow is your big eye exam and we hope it goes well. Everything else is kind of status quo as you continue to grow and learn. You are doing great!!!! We love you and you make us proud.

Hello Baby, you had a great weekend. We enjoyed trying different outfits on you, you enjoyed it less. I understand, but it was a fun experience for us.  You look adorable in any outfit. You had to go back on just a little oxygen. I think you just grew  a little tired after two whole days of breathing room air. You tired much easier and showed signs of frustration. After that the staff decided to put you back on oxygen to help you rest a bit. You will probably stay on it for a couple of days and ten give it a try again. This doesn’t surprise me since you moved so quickly through the last part of weaning off the oxygen.

The other big development this weekend was you growing!!! You are now a 4 lb baby!!!!! This really feels like a relief and a big milestone.  We are all so happy for you. You make your parents so proud.  You are 4 times your smallest weight. It is so incredible to look back at pictures of your tiniest days. You are a miracle and a blessing of the biggest kind.

We also celebrated Easter by going to church then going to Nana’s house. It was a wonderful day. I wish you could have been there with us, but as long as you promise to make it next year I will be happy. Everything feels so exciting lately because I always think  “next time I do this Holland will be with us!” It makes me happy thinking of just hanging out and doing stuff soon. For now, I will gladly take feeding and holding you. It still makes me very happy. We all look forward to your next adventure of joining the world outside the NICU. Keep up the great work and we will see you in no time.