Dear Nick,

Dear Nick,

I know, I usually write on the first of the month. Today is a special day though. The first of the month is only two days away, anyway, so I figured I could write today and it would cover both. Today, was my due date. I think about what my life would have been like if you would have been able to wait. The last few months have certainly been stressful. Maybe my life would have been easier if I were able to stay pregnant for a few more months. Given everything, I wouldn't wish it to be that way. I got to meet you and hold you and love you for a full 3 months earlier than I should have. I am lucky to have had that opportunity.

I looked at you today while I held you and wondered what you would look like if I were meeting you for the first time today. Would you look the same? You face so cute and so sweet. I wondered what my day today would have been like. I am sad that I didn't get to be awake and witness your birth. I am sad that I didn't even get to see you for 12 hours after you were born, or hold you for the first time until 3 weeks after you were born. Then again, I got to hold you 2 1/2 months before I was supposed to.

How things have changed since the last time I wrote to you. You are so BIG now. 6lbs 11 ounces. I can't believe it. You are still on oxygen, but only a nasal cannula, and you are on a low setting. We are concentrating on getting you to take bottles now. You do well with it sometimes, and other times, it seems as though you are too tired to be able to take it. That is okay though, you are trying, and right now, that is all that matters. I try to give you pep talks every day. This is really the last hurdle you have to surpass in order to come home. I know it will come soon.

Home... I thought the last time I wrote to you, that this time, you would be home. I am sad that you aren't here with me now. I know that you will be home soon. You just have a few more weeks, I hope.

I still hold you and love on you everyday. Sometimes when I kiss your neck you squirm and grunt, but that's okay. I know it probably annoys you, but I will keep doing it. You still lay on my chest everyday and sleep, and it is still the best part of my day.

You are such a strong willed, some may say stubborn, little boy. The other day, I was giving you a bottle, and you thought you should be done with it, so you clamped your mouth shut, and wouldn't open it. You were just exerting your will. We may have to have a discussion about that at a later time, but for now, it is okay.

Keep working Nick. You are getting so big and strong. I know it is only a matter of time before I get to hold you all the time. I know that you will be home soon, and we can start our life together. A life I know will be filled with laughter, giggles, and lots and lots of love.

Love you little man,

Mommy

This is what I see everyday when I hold you:

Growing Like A Weed

Nick is growing like a weed. He is already up to 6lbs 8.4oz. I can't believe the rate at which he is growing now. He is really packing on the weight.

The bottles are going okay. They are offering him a bottle with every feed. Sometimes he does really well and takes the whole thing, other times, not quite as well. He seems to have some trouble breathing while he is eating. His breathing becomes a little more rapid and labored. They are going to try turning up his oxygen while he eats to see if he can do better with the bottles.

That is really the only changes for now. We are just really continuing to concentrate on the bottle feeding. They really want him to get good at that before they make any changes with the oxygen.

6lb Baby!

This is what a 6 pound baby looks like...



6 pounds 2.3 ounces actually. Everything is still going well. Nick is continuing to take bottles. They actually offer him a bottle with each feed now. He goes back and forth with taking them. He usually takes a whole bottle at every other feed. On the other feeds he usually does about half, or a little more, then they give them the rest through the tube.

They are still happy to leave his oxygen as it is, so that he can concentrate on the bottles with out having too much change at once. Once he is taking bottles better, they will again try to ween him down on oxygen, or perhaps send him home on oxygen. Right now, they are thinking that sending him home with oxygen is a pretty good bet. Plans do change often though, so we are waiting to see what the final word is. He is doing really well. Can't wait for him to come home!


One more picture of the 6lb little man...

Bottles

Sorry I haven't posted in a few days. There have been some changes with Nick. Some good, some not so good, but overall, everything is going well. Early Saturday morning, Nick had two spells where he dropped his oxygen level, and his heart rate, so they decided to put him back on his oxygen. He is on a low setting and doing well with it. I think he doesn't really like to have it on. He keeps pulling at the tube. Since his breathing is still a little labored, they want to give him some more time with the oxygen.

The bottle feeding has been going well. The nurse decided yesterday to turn his oxygen way up while he was taking his bottle to help him out a little. He took the whole bottle in 20 minutes. They did the same last night, and again, he took the whole bottle. Having the little bit of extra oxygen helps him out a lot. He can use his full energy to eat. That is a positive step forward. They should start to add a few more bottles to his day over the next few days.

While I am disappointed that he is still on the oxygen, I am thrilled with the bottle feeding. In all actuality, the possibility is there for Nick to go home on oxygen. They don't do it often, but it is a possibility. He can't go home with out taking all his bottles, though. So for now, it is better to concentrate on the feeding aspect. The oxygen thing will come as he gets bigger and older, and like I said, he could always go home with oxygen for a while.

Nick is getting bigger and bigger. He is now 5lbs, 12.8oz. He will be 6lbs before long! He wakes up a little before feedings and then is awake for a while after. He just looks around at everything and takes it all in. I will try to take some new photos today to post!

A Whole Bottle

Nick took a whole bottle today. He really worked hard to do it, but he did it. He will continue to take a bottle a shift to build up his stamina, until he can take a whole bottle at every feed, then they will add more bottles to his day. At a robust 5lbs 5 oz, he is really only a few weeks away from coming home!

No Oxygen Support!

Nick has been pulling out his nasal cannula for a few days now, so they thought this was his way of telling them he is ready to be off the oxygen. So, he has been off all day and has had no spells. He seems to be doing well. He still has the tube in his nose for feeds, but hopefully that will come out soon.



Speaking of feeding... Nick has been doing ok with that. He has been trying to nurse, although he doesn't seem to want to put forth the effort. He took a bottle today and did well with that. He took 20cc's of a 50 cc bottle. He is going to get one bottle a shift until he can build up stamina to take more. So, that is our last step. Once he can take all his bottles, he will be ready to come home. We are still shooting for his due date at the end of February for him to come home. It is totally up to him and how well he catches on to this whole bottle/nursing thing.




No oxygen! I don't know what is up with that face though... he makes it all the time. I have tons of photos with his little lips pursed. I may be biased, but I think it is cute!

Bigger and Bigger

Today, Nick tried to actually breast feed. He didn't do as well with that as he did with the bottle. The bottle is a little easier for him. He doesn't have to work as hard with the bottle. We will keep trying though. Don't worry, I don't have pictures from today.

They turned him to 1 liter of flow on his nasal cannula. He is still working toward no support. He had a few spells today, but it was really to be expected. He has had a lot going on yesterday and today. Between the feeding, and the lower oxygen support. Nick also got his first round of immunizations yesterday and today. So, that is a lot of stuff for such a little guy. He is still doing well though. He is up to 5lbs 4 ounces. He just keeps getting bigger and bigger.

Bottles, Big Boy Clothes and 5lbs!

Lots of news! First, Nick reached 5lbs yesterday. 5lbs, 0.8 oz to be exact. Such a big boy. I started bringing him a few onesies to wear as well. He looks so cute in his "big boy" clothes. I posted a photo below of him in his outfit.

Bigger news, Nick tried a bottle for the first time today. He did REALLY well. He actually did better than the nurse and occupational therapist thought he would do. They were worried about how coordinated he would be with the suck, swallow breathe, thing. He took his bottle like a champ. He took 21 cc's from the bottle. He got really tired after about 15 minutes. His stamina isn't all that great, which is to be expected. He finally just sacked out. They gave them the rest of his milk by his tube. We will try a bottle once a day until he builds his stamina, then add more bottles. Once he can take all of his feeds by bottle, and drink the whole bottle, he will be ready to go home. This is sort of the last step to getting to go home!

Nick is also down to 1.5 liters of flow on his nasal cannula. If he continues to do well, they will turn him down. I am hoping that by next weekend he has no oxygen support at all.

So, it was a big weekend Nick. Big and great! You know I have tons of photos...

one of my favorite photos of Nick...

His big boy clothes...

Nick's first bottle

Growing

There haven't been big changes over the last few days, but we are on the verge of some big changes. They have turned Nick down to 2 liters on his nasal cannula. YEAH! That means he will be able to try a bottle very soon, providing he does well with it over the next few days. He has been growing like a champ... 4lbs 12.7 ounces. Only a few more ounces to the 5lb mark.

So, because he is almost 5lbs, and trying the bottle soon, we are really weeks away from him coming home. He has to eat well, which may take some time. They figure he won't get the whole bottle feeding thing very quickly. He will probably get very tired by sucking, and not want to take the whole thing. It will come though, it might take a little while. They will also continue to turn down the oxygen until he is able to be on room air with no assistance and no de-sats. Once he has that fairly mastered, they will do the hernia surgery. That is his last hurdle to coming home.

They took the feeding tube out of his mouth. Now it is down his nose. That is a good step, although it doesn't sound terribly comfortable for him. They leave the tube in the nose until he has really got the feeding thing down, and can take a whole bottle in 30minutes or under. At first, most babies get so tired, they stop after a little while, so the nurses will give the rest of his feed through his tube. Eventually he will be able to just have a bottle.

New pics of Nick with even less tubes!

(before bath)

during his bath (don't worry, this won't embarrass him later)

after his bath, all clean and wrapped up.

Almost There....

Nick is still going strong off of his cpap. They have been turning down the pressure on his nasal cannula. He started at 4 liters and is now down to 3 liters of pressure. The goal right now is to have him down to 2 liters by Friday, then possibly early next week see how he takes a bottle. Of course if there is one thing I have learned it is that although we have plans, Nick has plans of his own, and we have to go with what Nick wants.

He is doing so well off cpap. His oxygen level has been in the 90's consistently. That is really good. Before, he only seemed to be in the 80's.

We continue to have our daily bath dates together. It is really the highlight of my day. He is so awake and alert and happy after his bath. I love looking into his eyes when he is so awake and talking to him. He just looks at me. It feels like he knows who I am. That is an awesome feeling.

Nick continues to grow at a good rate. He is now 4lbs 8.7 ounces. I can't believe he is almost 5 pounds. He has come such a long way. I feel like I can finally see the light at the end of this long tunnel. We are almost to the point of Nick coming home. I am not sure I will believe them when they tell me I can take him home.

2nd Post

Dear Nick (munchkin man),

Wow! I can't believe it has been two months since the day you were born. It seems like just yesterday. I remember that day, thinking that February seemed so far away. I remember all the doctor's telling me that you wouldn't be home until around your due date. I thought that was a lifetime away, and yet here we are, just a few weeks away. Time has gone by so fast and so slow at the same time. My wish right now is the next time I write a letter like this you are home, asleep in your bassinet as I type.

You have made amazing strides in the last month. I am so proud of everything you have accomplished. Your tiny victories mean so much to me. Actually, they mean so much to everyone around that loves you. Everyone constantly asks me how much you weigh now. Each ounce is a triumph. Each day you are off the breathing machine is a blessing. You have done an amazing job since you were born. I remember the doctor talking about all the things that could go wrong with you while you were in the NICU. So many of those things haven't happened. You have done spectacular.

I remember a particular conversation I had with your dad about 2 days after you were born. I told him that I just had this feeling that you were going to be the star of the NICU. That you were going to sail through the critical periods with no problem. I knew you were going to make great strides and not have any major setbacks. While the road hasn't always been smooth, I feel like you have done such a great job. All the nurses love you. They always tell me how cute you are, how great you are doing. The "attitude" that I mentioned in your 1 month letter, has almost disappeared. While you still get mad, it is a lot less often. I realize now, that I would probably have a little bit of an attitude to if I had someone messing with me as constantly as you did.

I started being able to give you a bath this past week. It seems like such a simple thing. I am sure a lot of parents take that for granted, being able to give their child a bath nightly. It has become the highlight of my day. You are so awake and alert afterwards. It is amazing. You look around and look at me. You seem so happy and relaxed after your bath.

It is getting so hard to leave you at the NICU. Sometimes I just want to sneak you out. I can't wait to cuddle with you and be able to hold you any time I want during the day. Sometimes it is so hard to leave you. I miss you so much. Before, it was easier because I knew that you had to be there. You weren't strong enough to be home. I know you still need to be there, but with each passing day, I see you getting stronger and I know the time for me to take you home is getting closer and closer. Maybe I am just getting impatient.

Your room is almost ready for you. As I type this, I have a large load of your laundry waiting to be folded. Your room has been painted and furniture put together, clothes are hanging in your closet and toys waiting to be played with. All I need now is you.

Nick, please always remember, that life's struggles are nothing compared to what you have already faced in your short life. You have already made it through so much, nothing can compare to this. You are a fighter and you always will be. I have been with you everyday, and will be for the rest of your life.

I love you Nick.

Love,
Mommy

1st Post

Nick is still doing very well off cpap. He is still on 4 liters of oxygen and doing well. The plan (for now) is to start slowly turning down the liters. They will try to do 3.5 liters tomorrow. Then if he does well with that, they will turn him down again. He will have the feeding tubes removed and start trying to actually take a bottle after he is down to 2 liters.

Everything else seems to be going well. I give him a bath every day. It is truly the highlight of my day. He is so awake and alert after his bath. He spends 20 minutes just looking around and taking everything in. He always looks so cute all bundled up after his bath.

Nick after his bath... awake and alert.