Letters to Holland

Hello Baby, you had another great day! You are still doing well with no oxygen. Whenever your oxygen sat drops you will correct it on your own by breathing faster. We had increased the speed of your feeds recently. You are not spitting up, but you have shown signs of re-flux. That’s okay, it is probably just something you need a little time to become accustom to. Your tasting sessions have continued to be hit or miss, which is what we would expect so early in this process. We will continue to track that progress closely. You gained 38 g and now weigh in at 3 lbs 13 oz.

I got to hold you before going to work, which loved. I also got a video of you from Nana while I was at work. That always helps me get through the day. Mommy came and held you in the evening. She sent me a picture of your very first outfit! The staff has decided to start weaning you off you isolette(baby box). This is basically lowering the temperature so that you can learn to adjust your body temperature without our help. Currently you have a little thermometer stuck to your skin all the time. As you heat up or cool down your isolette adjusts the air temperature to keep your body at a good temp. So now you wear little onesies and are wrapped in a blanket. The temp in your box is a little cooler and its becoming more your job to keep yourself warm. You still have the thermometer just in case. It will alert  the nurses if you get outside your comfortable temp. You are growing fast and are as beautiful as ever! We love you and can’t wait to bring you home!

Hello Baby, you had another great day. You continued to do very well without extra oxygen. You have been sleeping well. Your tasting sessions are going pretty well. About half the time you are awake enough to try, so that’s not bad. As you eat more and become hungrier that will cause you to wake up more near feed times.  When we do give you tastes, about half of those times you respond well and give us positive feedback for most of the 1 ml tastes. We give you up to 1 ml per taste, drop by drop, as you suck. We do that until you finish the 1 ml or until you get overwhelmed. We have to be careful not to push and to just let you tell us when you want more. It is important that we do not make you have negative response to anything food related. You have had so many negative senses in your mouth from all your tubes it is critical you enjoy your pacifier and  milk.

You gained a whopping 54 g and now weigh in at 3 lbs 12 oz. I am glad to see you have made up a little ground as you had a couple slow days in a row. I got to hold you 3 times yesterday. Since you have gotten so big the nurses have said I can hold during your feed times. They start feeds as the last thing we do at touch times, so now I can be here at a touch time and help the hold for 45 minutes. I like this way better then having to block out a 3 hour session. This new stage is so fun, we really interact with you and have new fun things to do together. We are so excited to have you come home someday. You are so loved and you still have this whole world out side of your hospital to learn about. Keep up the great work and we will soon be exploring this world hand in hand!

Hello Baby, you had another wonderful day. You gained 22 g and now weigh in at 3 lbs 10 oz. Four pounds seems just around the corner. Today was maybe the biggest milestone you will have in your stay here. You got taken off oxygen all together, and now just breathe regular air with no assistance just like everyone else. We are so proud. You have handled it extremely well. I actually think you do better now that you don’t have any uncomfortable tubes in your nose or mouth. You seem as comfortable as ever and I think with less frustration in your life you stay calm and have better numbers than when you had oxygen.

So we are now tasting food! The next hurdle for you is learning to eat well. So, when you are alert at touch times we hold you and give you your pacifier. Whenever you suck on it we give you a little drop of milk. You really enjoyed your fist taste. I could see your wheels turning  when it hit your lips. I asked you if you liked it and you gave me the biggest smile I have ever seen. It is clear this is something you like. I really enjoy this too. We get to do this together. I very much feels like a little bonding moment for us. We also get to hold you almost every touch time now. If you are awake and alert we give you your little taste. We then try to hold you while you tube feeding starts right after the taste. The staff wants you to learn, that when you suck you get milk, and then you get full. You are a quick learner so I imagine this will be a quick schooling session.

Mommy gave you a bath for and for the first time actually dipped you in water. Previously, it was just sponge bath. She loved being able to do that with you. I think we both thought the day was as fun as we’ve had here. It was just full of bonding moments. We loved it, Without the oxygen, and then being able to try feeding stuff, and the big girl bath we felt like just the average family doing average parent stuff. We both needed that. It really makes us excited to get you home someday. We love you and you make us so proud.

Hello Baby, you had another wonderful day! You did not gain any weight which  kind of stinks. The doctors did drop you to a low flow nasal cannula at 25 ml oxygen. This is the lowest possible setting they offer in the NICU. The next step is no oxygen at all. I can’t even believe it. I am so happy today. This is such an exciting time for everyone involved. They moved you feeding tube into your nose instead of through your mouth. You finally after over 9 weeks have no tubes in your mouth. You seem so comfortable and content. We are probably going to start bottle feeding this week. Just the thought of feeding you a bottle makes me feel full of joy and hope. It makes me think of us having you home, and being normal parents, and comfort and a lovely home and family. It is so exciting. You are the most beautiful thing I have ever seen and could not be more happy to have you as my daughter. I am just overwhelmed with joy today. Your progress really lifted my spirits lately if you can’t tell. I can’t wait to  feed you a bottle and hold you at home. We love you baby girl.

Hello Baby, you had another great day. Your vent settings were stable. I feel you may not even need any assistance with oxygen anymore. The prongs in your nose are basically out 75% of the time. You pull them out the second your caretaker turns their back. You are trying t send a clear message. I come in and see you often and they aren’t in your nose and you do fine. So, I just leave them out. You have super tiny nostrils so its hard to get them in there. I wouldn’t be surprised if you were on low flow in the next couple days and off oxygen all together in a week or two. You just blow by all expectations.

You gained 18 g, so not a whole ounce but that is fine. Maybe tomorrow we can get a big gain. The doctors like to see an average of over 30 g. So keep that in mind as grow today.

Mommy held you and you both “napped hard.” She said as soon as she laid back you kind of crawled up her chest to where you felt comfiest and then just napped. I have noticed this too. You definitely move to your comfortable spot. You push with your legs and even move your head to whichever side you like at the moment and then pass out.  It is pretty adorable to watch.

You make us so proud! We got your crib ready at home for you! It is patiently waiting your arrival as Mommy, Daddy and Sis are. Keep up the great work, we love you!

Hello Baby, you had a great weekend. You gained like 55 grams over both days and now weigh in at 3 lbs 9 oz. Your oxygen needs and setting have been reduced as well. It seems you may be just a few days away to changing to a low flow cannula. The great news is that low flow is the last step. After that you will someday just have no assistance. I just can’t wait for you to not have to deal with the discomfort with all these tubes.

Mommy and Daddy both held you Sunday. I can really tell you are more aware of the holdings lately. It seems like as soon as we pick you up you are happy because you know that means nap time. I can just tell that you know whats going on now when we hold you. You always try to look up at our faces when you lay on our chest. You lift your head pretty easily these days. I am impressed with your strength, you must have got that from me. I am so strong, like I can lift lots of stuff.  Your mom? Not so much.

You had an eye doctor look at your retinas, which I guess often have problems in babies born as small you. He said you had some problems, but because they have caught it early they will monitor it and address if needed. He said half of babies with this problem self correct over time and the other half need minor laser surgery to repair. He doesn’t think it will be anything he can’t fix if need be. Everything is going so well. You really make us happy. We can’t wait to bring you home.

Hello Baby, you had another great day. You enjoyed your nasal cannula all day. I don’t think you missed the C-Pap at all. You stayed right around 25% oxygen all day. You gained 32 grams and now weigh in at 3 lbs 7 oz. You had a pretty uneventful day, you just grew stronger and older. The doctors seem happy with your progress, we all celebrate a little each day together. Your high-flow nasal cannula is set at 4 liters per minute. It was initially set at 5 L/m. You will stay on this cannula until you drop down to 1 L/m. Then the nose piece is smaller and more comfortable for you. This will also allow them to move your feeding to tube to your nose instead of in through your mouth. This is also a big step in your comfort. You haven’t ever had a mouth empty of tubes. I imagine this will be huge for you. Lots of babies that have had tubes as long as you grow disdain for things in their mouth. You have had a lot of negative feeling associated with things in your mouth, so that is understandable. As a baby, you need to enjoy your pacifier and bottle feeding. It’s a big part of your development and you need to develop your ability to eat on your own. This is often a hurdle for babies that have been through a situation like yours. So, we need to get that tube moved ASAP. As soon as we can move it they will begin letting you taste milk and teaching you to feed out of a bottle.  If your history is any indication, then you will conquer this next step in no time. We love you and you make us proud, keep up the great work. 

Hello Baby, You had another wonderful day! You gained 11 grams, which is not much but still on the positive side. We will see if you make up for it tomorrow with a big gain. You are on 25% oxygen basically all day. You seem to like to like the time on the cannula just as much as the C-Pap. In fact, the doctors just announced to no longer do 6 hours on and off that they are just leaving you on the cannula to see how you handle it full time. That’s exciting! You just progress so quickly lately. I can’t help but start to get overly optimistic and think about you coming home each day. At the rate we are going I could see it happening in as little as 3-4 weeks from now. I in no way expect that, but you just grow and progress so fast lately I keep dreaming about it. I can tell mommy does to, she is nesting at home like crazy. I think its instinctual. She seriously looks like a bird moving around sticks in every which way to make it all just right. It cool I guess, but I don’t think you will notice if the blue picture frame looks better to the right or the left of the television. You currently live in a box with a blanket over it, but she feels better so I try not to complain. We love you and can’t wait for you to come home. Keep up the great work.

 

Hello Baby, you had another great day today. You gained 26 grams and are now up to 3 lbs 6 oz. Its been pretty incredible to watch you pack on the grams lately. You did really well on your 3 hour trial yesterday, so well they extended it to 6 hours. You still seemed fine at the end of 6 hours they have decided to put you on high-flow cannula for six hours and the C-Pap for six hours. This will be a new on and off cycle for a little bit to help you adjust easier and not over stress your body. Mommy held you last night. You guys both enjoyed it. You have just been great lately. I no longer stress about talking to doctors during rounds, instead its more like a time when everyone talks about how great things. It used to only basically cover concerns and major upcoming tests. Doctors are literally cheering you on. So you just keep on and keep growing stronger. We love you and love cheering you on too!

Hello Baby, You had another great day today. It was one of the best days I can remember. You are so adorable and beautiful. Everyone tells us and we couldn’t agree more. You gained 34 grams and now weigh in at  3 lbs 4 oz. I just can’t believe your growth lately, it blows me away. I believe over the last week you have averaged over an ounce a day. You are just incredible. The staff here has tweaked all your feedings and formula to find the exact treatment to help you grow the most. We are all so lucky to have such a talented staff caring for you. Also, overnight the staff decide to try you out on a high-flow nasal cannula instead of your C-Pap machine. So that is a huge step. You have been wearing this mask and head wrap thing for a few days. It really doesn’t look comfortable, and I see you fighting with it regularly. So, thinking that you may be transitioning off this soon depending on how you respond to this trial is extremely exciting. Of course, I want you to have whatever the doctors decide is most appropriate for you, but I hope that you are ready for the change. I feel like it is a big step in your overall comfort.  Plus, we all love being able to see your face.

I got to hold you, and as usual you  zonked out hard. Whenever I look at you sleeping in your bed, it looks like you move around a lot and just don’t feel comfortable. Whenever Mommy or I hold you, you are straight comatose. You are just limp all over and drool on us. That really makes us feel great that what we do can make you feel better. We love you so much. Everything you do impresses us to no end, keep up the great work and you can be home in no time.