Thursday, January 29, 2009

Bath Time

Nick is still off cpap and doing well with it. He is still on 4 liters. They are thinking about weening him down to 3 or possibly 2 liters on Monday. Once they do that, they will start getting him ready to take a bottle, or breast feed. Hopefully next week, I will be able to feed him for the first time (fingers crossed).

Today, I gave Nick a bath for the first time. They have special wipes for the babies. It is a process. You have to warm them up, strip him down, monitor leads and all. It was really neat to do that for the first time. He woke up and watched me the whole time. Only once did he look at me like he wasn't quite sure if I knew what I was doing. He seemed to really like his bath. He just watched me the whole time, with very little fussing. Now that I know how, I am going to give him quite a few baths while he is there. That was the highlight of my day! Sorry I don't have any photos of his bath, but my hands were a little full.

Wednesday, January 28, 2009

Try, Try Again

So, after the conversation I had with one of the doctor's on Monday, I came in Tuesday to find Nick off cpap! He was on 2 liters and doing well. Last night, however, he had a few spells, but instead of putting him back on cpap, they incresed his flow to 4 liters. So, as of 9:30pm, he is still off cpap and doing well. He hasn't had any spells today. He is doing well. I had a lot of pep talks with him over the last few days, so I am hoping that he will stay off cpap. If he does, they will try to give him a bottle sometime in the next few days. I have requested that I be there but it will depend on when they decide to do it.

Nick's weight: 4lb 5.8oz. Guess I am going to have to take those preemie clothes back to the store. He is working his way up to 5lbs.

Of course you know I took photos of Nick without the cpap!

Monday, January 26, 2009

"Big" Boy Bed

They decided not to take Nick of cpap today. They are going to give him one more week. They plan to take it off either Sunday or Monday. The thinking behind waiting a week is if they took him off now, they would have to put him on a 4 liter nasal cannula. A 2 liter nasal cannula is better for him. So, they are hoping that by waiting a week, they can switch him to a 2 liter instead of a 4 liter. A few more days isn't so bad. The doctor said that the longer he stays on it, the easier time he will have to come off it.

This weekend, they decided to put Nick in an open air crib. No more isolette. He is big enough now, that he can hold his temperature on his own while being swaddled. He still isn't so keen on being swaddled, but he is tolerating it. It is really neat to see him in the crib. He is much easier to touch and kiss... you know he is thrilled with that.

The big news for the weekend... Nick reached 4 pounds! 4lbs, 1.5 ounces to be exact. Growing so big. We just have a few more hurdles to get through. I know he is going to get through them and be home in no time.

Now for a few more photos...

Now, just to give you an idea of how much he has grown over the last (almost) 2 months...

This is Nick at 5 days old, with his elk stuffed animal.

Nick today with the same stuffed animal... and of course he is in his "big" boy bed.

Thursday, January 22, 2009

Bigger and Bigger

Nick is getting so big! He is now 3lbs 12.8 oz. I can't believe he is almost 4lbs. Wow. He is just getting himself ready to come home. He continues to take little steps toward that goal.

Yesterday, they began transitioning him to come out of the isolette and into an open air crib. Because he is gaining good amounts of weight, he is able to maintain his own body temp. Therefore, he doesn't need the isolette be heated anymore. They swaddled him all day yesterday and had the heat off in his isolette. If he does well on that, he will move into an open air crib. I don't think Nick really likes being swaddled though. He really likes the freedom to move around, which he does a lot. When he is all swaddled, he can't really move his arms and legs like he would like. He gets a little fussy when he goes to move, and can't. He is taking it well though.

The plan now is to retry him off cpap Monday. If he can stay off cpap, then they will bring in OT and see how well he can take a bottle. Some babies take to it immediately, some need a little coaching. I am not exactly sure how long he will be off cpap before he starts trying a bottle, but it won't be too long.

Things are looking good. They are still saying end of February for him to come home, but I think it may actually be sooner. I won't get my hopes up too much, but I am thinking maybe mid-Feb. Can't wait!

Tuesday, January 20, 2009

Doing well

Nick has been doing well back on the cpap. He has had no de-sats or spells today. We snuggled and had some good kangaroo care today. He always really enjoys that. Last night was a weight night... 3lbs 9 ozs! Well on our way to 4lbs. I can't believe he has almost tripled in size in 6 weeks. He is going to be home before I know it. I have been working on his room. This weekend is Nick's baby shower. So as soon as I get the stuff put away from the shower, I will post pics on Nick's room. It is starting to look really cute!

Monday, January 19, 2009

My New Favorite Photo

I know what you are thinking... another new favorite photo... but this really is awesome... check it out...

Notice anything different? Missing maybe? Yes, the cpap is gone! YEAH! I can't believe it happened this fast. He is doing well. He is working a little harder because the cpap is gone, but so far so good. He hasn't had any de-sats. He did drop his heart rate a few times earlier, but he has done better this afternoon. I can't believe it! Yeah, my new favorite photo!

UPDATE: Nick had a few de-sats yesterday evening, so they decided to put him back on cpap. While it is disappointing, I know he just wasn't quite ready. The plan is to give him a few days and try again. Hopefully next time we will have better results.

Sunday, January 18, 2009

Awake and Alert

Nick had a very good weekend. He is growing... 3lbs 7.2oz. He has also started being much more awake and alert. It is amazing. My mom, brother and I went to see him today. He was awake the whole time we were there. He just looked around. He would look at us, and look around. When he was laying on my chest, he was still looking around. He was so tired, but he kept trying to stay awake and look around. He was really fighting going to sleep. It was really cute, although I probably won't think that when he is fighting sleep after he comes home.

Nick is starting to fight the cpap machine. I think he really wants to have it off. I can't blame him. They are hoping to be able to take him off cpap in the next week or two. I think he will be so much happier if that isn't on anymore. I almost can't wait as much as he can't. I really haven't been able to see his face all that well. There is always something in the way.
Anyway, I have a new favorite photo now. I know, every week I have a new favorite. This one is too cute though. It really shows how awake and alert he is. He is really starting to gain some weight too. You can see his little double chin. He really hates this, but I can't help but to kiss the chin!

Saturday, January 17, 2009

Growing and Growing

Nick has had a good couple of days. The hernia doesn't seem to be bothering him much. He has been doing well. No de-sats over the last few days. I think they are going to wait until he is about ready to come home to do the surgery. That seems to be the consensus for now.

They stopped giving Nick his morning caffeine this morning. The caffeine was to help stimulate his brain, to make him remember to breathe. It takes about a week to 10 days to fully leave his system. He has to be off the caffeine, and not have any de-sats to be able to come home, so this is just one more step in the process. Hopefully when the caffeine is out of his system he will not have any de-sats. We will see over the next week how he does with that.

Tonight was a weight night. He is now 3lbs 7.2 ounces. Getting to be such a big boy! It is so weird to say that 3 1/2 pounds is big, but considering where we were, it is big. More than double. They say that the next few weeks he should gain weight more and more. From about 34 weeks - 40 weeks, babies gain weight at a faster rate than at any other time.

I have been working these last few days on getting Nick's room ready. I have the furniture now (of course some of it I still have to put together). It is all painted (thanks Troy). I am going to be putting all his stuff away over the next few days. I will post pictures of the room as soon as it is done. I think it is going to be adorable. I can't wait for it to be complete, and for him to be home enjoying it.

Thursday, January 15, 2009

Positive Changes, and Bumps in the Road

First, Nick is doing well. He is still on cpap and not having any desats. He is really handling it well. They are talking about trying to ween him off cpap and on to a nasal cannula in the next two weeks. It will really be up to Nick when he is ready, but the goal is to have him off of it by the time he is 34 weeks. Every baby is different, and handles it different, so they will be monitoring him to see how he does.

Today, they also started changing his feeding pattern. He is used to getting 10cc's of food an hour by continuous feed. Now, they are not feeding him for an hour, then they give him 30cc's of food over a two hour period. So he is still receiving the same amount of food, just over two hours. They will eventually feed him over 1 hour, then feed him all at once. Once he can handle his food all at once, and he is off the cpap, they will try to start feeding him by bottle. This will be a little bit of a process. Nick will have to learn how to eat and breathe at the same time. This is sometimes hard for a preemie to learn, but I know he do well. All of this is in preparation for him coming home.

We are still looking at him coming home at the end of February. It just feels like they are getting him ready to send him home.

There was a little bit of bad news today, but it is minor. Yesterday, Nicks belly was a little distended and tight. They did an x-ray to make sure he didn't have a blockage. They found a hernia. Basically he has what is called a inguinal hernia. It occurs when the loops of the intestine slip down from the abdomen where it belongs. It doesn't hurt him. The doctors and nurses will check him regularly to make sure it remains soft and can be pushed back into his groin. As long as it stays like this, he will have surgery in a few weeks to repair the hernia. He will have a regional anesthesia to prevent him from having to go back on a vent. It is a fairly easy straight forward procedure. It is actually the most common surgery performed on preemies, because the risk of hernias is fairly high in preemies.

In the event that the hernia becomes hard and can't be pressed back into his intestines, they may have to perform emergency surgery to prevent the blood flow from being blocked in the intestine. This could lead to permanent damage of the intestine if not repaired quickly if the blood flow is blocked. So, they will be watching him closely over the next few weeks. The goal is to not do surgery until he is almost ready to come home. If they do it in the middle of him learning how to do things like eating, or breathing on his own, it may interrupt his learning process and set us back. Generally, they do the surgery about 2-3 days before they think he will be going home. Then he will stay in the hospital 2-3 days and come home. That is the goal. Of course we all know that Nick sometimes has plans of his own.

Last night was a weight night. Nick is up to 3lbs 5.8 oz. He is growing like a champ! He is in the 30th percentile for weight. I know that seems low, but considering he was in the 11th percentile when he was first born, 3oth percentile is fantastic.

So, while all the news wasn't positive today, it wasn't bad. We are making positive steps to Nick coming home and that is the most important thing. The hernia isn't a set back, just a bump in the road. We are still moving forward and that is all that matters.

Tuesday, January 13, 2009

Getting Bigger

Nick has been on cpap now for over 24 hours. He had a few de-sats at first, but since then, he has done great. No de-sats since about noon yesterday. He is doing well on cpap.

Last night was a weight night. Nick is up to 3 pounds, 4.4 ounces. Growing so big, so quick. The increased his feeds to 10cc's an hour.

So, still just going along and getting big. That is his only job right now, and he seems to be doing it well.

Monday, January 12, 2009

Eye Exam

They did Nick's eye exam again today. This time, he tolerated it much better. They were able to see what they needed to see and declared that he does not have retinopathy. They won't even have to see him again until he is 6 months old! I am so happy. That is just one more thing we can check off of the list. One more step that makes Nick that much closer to coming home.

I don't think he will be able to be held today, but I am so happy for him, that I will be okay with not holding him... I think.

They did not turn him down from bipap to cpap today. They figured since he was having the eye exam, they thought it best to leave him as he was. He is handling it well though, so that is good. At least they didn't have to turn the rate up. As long as he continues to do well today, they should turn him to cpap tomorrow.

So, all is well on the Nick front. He did a good job today. I am proud of him.

Sunday, January 11, 2009

A Good Weekend

Nick had a really good weekend. He didn't really have any de-sats all weekend. Because of this, the doctor felt like it was time to start weening him off the bipap, and back onto the cpap. The bipap has a rate associated with it. Nick's rate has been 20. He went down to 15 on Saturday and did well with that, so they turned him down to 10 today. The goal is to turn him completely to cpap tomorrow. So far he has done really well. In fact, they were able to turn his oxygen percentage to 21%. That is the same as room air. He has really been doing well.

I am still continuing to hold Nick everyday. It is the highlight of my day, and I think he really likes it as well. He opens his eyes for about 20 minutes when I get him out of his isolette. I don't think he can really make anything out right now, but he looks around quite a bit. He seems alert when he is checking everything out.

Nick really likes being held these days. He lays on my chest everyday for at least an hour, if not more. Today, when I went to put him back in his bed and get him all situated, he threw a little temper tantrum. I guess he wasn't ready to go back. He wanted more mommy time. He got really mad. Crying and de-sating. I finally got him to calm down after about 10 minutes. He made me feel so guilty. He also made me feel loved. I felt so bad that I had to leave him, but it felt good to know that he enjoys his time with me.

I can't believe he has been here for 6 weeks. We are half way there... half way to him coming home. I can't wait to see him all the time. Be able to pick him up, hold him, and kiss him every day.

Here are a few new pictures...

This is Nick yesterday. He stayed like this the entire time he was on my chest. Guess he didn't want any photos taken of him... too bad...too cute!

Thought I should have a picture taken of Nick, showing all of him, to give you a better idea of how big he is.

One of my new favorite photos. This is the best photo I have of his face. Even though you can't really see it all that well, I love his little mouth. So sweet.

Thursday, January 8, 2009


Nick had another good day today. He only had one de-sat this morning. Nothing else has changed much... except we are at 3 pounds! That means he has doubled his birth weight. He is such a big boy. I still can't believe that I think 3 pounds is big, but I do. He is really trying to get his weight up. I guess he is making up for lost time. I am so proud of him. He is growing so quick. He might not even need preemie clothes by the time he comes home!

Wednesday, January 7, 2009

Pictures... Finally

Nick had a much better day today...mainly because no one messed with him. I went this afternoon, and held him for almost 2 hours. He was quite content. No major changes today. That is what we are hoping for. The next few weeks he should just hang out, and grow. He got weighed last night, but there wasn't really a change in weight. Nick is 14 1/2 inches long. He is going to be so tall. Here are a few photos... Enjoy!

I took this today. He is starting to look so big... as if 3lbs is big!

This is currently my favorite photo. I love seeing Nick's eyes open.

This really gives you an idea of how small he is compared to me.

Nick just hanging out in his isolette.

Tuesday, January 6, 2009

Eye Tests

Nick had a bit of a rough day today. He didn't have any de-sats. They needed to do the eye test on him for the Retinopathy. They dilate his eyes, then use a device to hold open his eyes. Once the eye is open they look at the eye using a magnifying glass and light. Needless to say, he did not like this AT ALL. He dropped his heart rate and his oxygen level all at once. The doctor opted to suspend the test for the day. They were able to get a look at the right eye, and a peek at the left eye. They felt like they didn't see any problems, but they want to try again to make sure next week. After that, Nick didn't really want to be messed with the rest of the day. Just touching him irritated him. Other than that, he is doing well. As long as no one was messing with him today, he was a happy boy. Tonight is a weight night, so I will let you guys know tomorrow what his new weight is. We are trucking towards 3lbs.(fingers crossed).

Sunday, January 4, 2009


So, I started thinking. I throw around a lot of terms, like sats, de-sat, cpap, and never really explained any of it. Thought you might want to know a little about that. Plus, a few of you have "casually" mentioned that you don't know what I am talking about. So, I am going to do my best to try to explain things. I don't have a nursing degree, so bear with me. This might be a rather long post, so if you are just interested in knowing how he is doing today, I suggest scrolling to the end.

To start, when Nick was born, he was considered 28 weeks old by gestation (by date of conception). Upon assessment once he was out, they felt he was more like 26 weeks. This is common with most newborns. Some of it is based on the fact that there is no guarantee when I conceived, unless it was done by invitro. Also, his size, weight etc lent them more to think of him like a 26 week old preemie. That comes in to play when we are trying to figure out different milestones that he should be meeting while in the NICU.

Once Nick was here, there are a few health concerns that he could have. I am going to go over a few. Most of them, we will be looking for in the next few weeks.

Breathing: Most babies born at this stage have Respiratory Distress Syndrome. Their lungs are simply not mature enough to do the work that they need to do. Thus the ventilator and cpap. Both do relatively the same job, making sure he has the oxygen he needs. The ventilator provides more support than the cpap. However, the ventilator has it's own drawbacks. The longer he is on the vent, the more chance he will have chronic lung problems through his toddler years.

Apnea of Prematurity: When I say Nick has or hasn't had any spells/episodes or de-sats, this is what I am talking about. Basically, if Nick was still inutero, he would be all happy and content. No one would be messing with him, touching him, etc. He wouldn't have to worry about eating, breathing, going to the bathroom, all those things he is doing now. That is a lot for his little brain to have to worry about. Sometimes, his brain just has a hard time doing all these things at once, and something suffers. So, he kind of forgets to breathe. He is hooked up to machines that let the nurses know if that happens, and they can stimulate him to get him to breathe if he needs to. Right now, if he does that, he can usually bring himself out of it without any help. His oxygen level should be around 86-94%. Yours and mine is somewhere usually close to 100%, but if Nick actually gets too much oxygen from the machines, it can actually cause problems of it's own, so they like to keep him at about 86-94%. They can adjust the machine to deliver a percentage of oxygen as well. If his oxygen level is a little low, they can turn it up, or vise versa. A de-sat, or spell occurs when his oxygen level drops below 80. The apnea should continue to get better, and should be gone by the time he is about 36-38 weeks (by assessment).

Infection: Most preemies get some type of infection. Their immune systems are just to immature to fight off everything. We already experienced that with the staph infection. The nurses know what to look for in the case of infection. They do a cbc to look for indications of infection twice a week. If they notice something, they do a culture. If he has a bunch of de-sats in one day, they may do a cbc to look for infection as well. That is how they caught the staph so early.

NEC: This is Necrotizing enterocolitis. This is a disease that effects his intestines. You can't predict who will or won't get this. It generally starts two to three weeks after feedings start. He is past that point, but still at risk for this. They haven't had any trouble with him tolerating his feeds, and he continues to have bowl movements on his own, so hopefully we are in the clear for this, but there is still a risk. They treat this with some antibiotics, or in worse case scenario, surgery. Like I said, we look good on this front, but he is still at risk.

Retinopathy of prematurity: This is the development of abnormal blood vessels in the eye. It usually resolves itself without any vision problems. It may cause Nick to have to wear glasses. There is a risk of blindness, but it is a slight risk. An optometrist should come to look at him over the next few weeks to decide if he is at risk of developing this. He is at risk for this around 4-6 weeks.

Nick stays in an isolette everyday. He can't maintain his temperature well on his own, so the isolette delivers warm humidified air to make sure his body doesn't have to work to hard to keep him warm. The more work he doesn't have to do, the faster he can gain weight.

He still has his feeding tube. He has to be off the cpap for a while before he can try feeding on his own, from a bottle or the breast. He has to prove that he won't forget to breathe while he is eating.

Now for explanations of the things you see in the photos, attached to him. The cpap is the thing on his nose. It has tubes that are connected to it. There is one tube with humidified air, and one with just air. The tubes are somewhat cumbersome, so he wears a little hat to help keep the tubes situated and off his head. It also helps keep the cpap in place. He has two tubes in his mouth. One provides a constant feed for him. The other allows air to come out of his tummy. He can't really burp on his own. He sometimes wears a chin strap. It is the blue thing around the top of his head and around his chin. Nick likes to sleep with his mouth open. That lets too much of the air that is going in through his nose come out. So they have to keep the chin strap on to keep the air in his lungs.

So for now, the major issue is the de-sats. It is something he should grow out of. It seems like he is starting to. As of today, he still hasn't had any de-sats since the Jan. 1. That doesn't mean that he won't still have them. The next step will be to start weening him down off the bipap, and onto the cpap. (The difference in cpap and bipap: Bipap provides him with a little positive pressure to make sure his lungs are opening all the way when he takes breaths. Cpap doesn't do that, it just makes sure the oxygen is there) Basically, it is just getting him ready to do all this breathing stuff on his own. They will start to ween him down and see if he can handle it. Ultimately, the goal is for him to just be on room air.

To be able to go home Nick needs to between 4 and 5 pounds. Can gain and maintain between 15-30 grams a day. Able to maintain his own body temperature in an open bassinet. Doesn't have any apnea spells for 8-10 days. He also needs to be able to eat from the bottle or breast with no problem.

I think I have explained everything, but if I have forgotten something, I will try to explain better when I give you updates. Sorry for the extra long post, but there are a lot of things to explain.

Nick is doing well today. No de-sats. He continues to grow... 2 pounds 13 ounces. I can't believe he is almost 3 pounds. I can't believe that I think 3 pounds is this big number, but for him it is. So for tonight, all is well. I am still working on getting those photos, I promise. I will get some soon.

Almost 3 Pounds

Nick has been doing really well the last few days. On the first, he had a few de-sats, but recovered, and has not had one since. I almost hate to write that, for fear that he may start again. Even if he does, he went 4 days with no de-sats. That is so good. I spoke with the nurse about that today, and she said they will probably give him a few more days, then try to start weening him off the bipap and on to the cpap. I could give you an explanation of the difference between the two, but do you really want one? No, all we need to know is the cpap is a little better than the bipap.

Nick is growing so much now. They have increased his feeds to 8.6cc's an hour. Can you believe it used to be only .3cc's an hour. All that food is really making him grow... fast. He is up to 2 pounds, 12.2 ounces. Just a few ounces away from 3 pounds. I can't believe he is right around the corner from 3 pounds! Tonight is another weight night, so we will see how much he has increased tonight.

He is still getting the antibiotics for the staph, although that seems to be gone. His course of antibiotics is done on Wednesday.

I have been holding him everyday. We get snuggle time for at least an hour a day. It is truly the highlight of my day. He wiggles and cries a little when I get him out of his isolette, but as soon as I put him on my chest, he calms right down. He lays just lays on my chest. Sometimes he sleeps, sometimes he looks around. I talk to him. He wiggles. I love feeling his hands move across my skin. Sometimes he puts his hands up by my mouth. Most of the time, he just sleeps. He seems so content. His sats are good, his heart rate is always good when I hold him. It is wonderful.

All in all, I have nothing but good things to report on behalf of Nick. Now, according to form, he should prove me wrong within the next few days. He likes to do that to me. I think he wants to keep me on my toes. That part will probably not change at all the rest of his life.

** I know I haven't posted any photos in awhile. I took some really good ones yesterday. I promise to post a few over the next few days. I know some of you are anxious to see him since he has grown so much.

Thursday, January 1, 2009

One Month

Dear Nick,

Happy Birthday Nick. You are getting to be such a big boy. A whole two pounds, nine ounces. I can't believe that you have been in my life for a month. My only wish is that you were home with me now. I know that you are in the best place possible for you right now. You will be home soon. I can't wait for that.

This last month has been life changing in so many ways. I never knew that I could love something as much as I love you. I have heard other parents try to describe the love they feel for their kids, but until you have your own, you don't fully understand it. I would do anything in this world for you Nick. Please always remember that.

Your personality has really come out in the last week or so. I have been coming to see you every day and I am amazed at the changes I have seen in you. For the first few weeks, I think you knew I was there, but I never felt like you really cared if I was there or not. You just slept. The last week has been amazing for me. Every time I come to see you, I talk to you. You always open your eyes and look for me. You can't keep them open very often, but you always look at me. I feel so special. I love looking into your sweet eyes and talking to you.

Also, when you cry... usually after the nurses make you mad, I put my hand on your head and your back, and you always stop crying right away. I am so thankful that I can be there to comfort you when you need it.

The last month has been hard for me. I sometimes feel like I am not always able to be there for you when you need it. Today, that changed. You had a little bit of a rough morning. You kept dropping your sats. Your oxygen level would go down below 80. When your sats were above 80, it was just barely. They had to turn your oxygen up to 47%. (normally, your oxygen level is at about 25%) You would do that many times. When I came to see you, you did that three times in 20 minutes. I thought the doctors wouldn't let me hold you today, but they did. We got to do kangaroo care. They put you on my chest. Your sats came up immediately. Your oxygen level came up to 88-92 and stayed there. I just held you. I talked to you, I listened to you breathe, I felt your hands move on my skin, I kissed your fingers. Here it is 5 hours later, and no desats, not one since I held you. The doctors even did an x-ray on you. They thought there might be a reason for your desats. No reason though, you had no fluid. They were even able to turn your oxygen back down to 27%. You just needed some time with mommy. Thank you for that Nick. You have no idea how much I needed that today.

I think today was the first time I felt like a mommy. I felt like I was doing something to actually help you. That felt so wonderful. And I absolutely loved kissing your fingers! That was the best.

You are also starting to get a reputation in the NICU. You sometimes can have a little bit of a temper. Anytime any of the nurses or doctors do anything to you, you get really mad. You cry, and make fists. It is adorable. You totally deserve to have a tantrum. I know you get tired of being messed with. The nurses think it is cute too. Even the doctors know you have little tantrums. Please don't do that to mommy when you come home. Mommy might not think it is so cute later in life.

Nick, life won't always be easy. I guess you are learning that lesson early in life. I am going to do everything in my power to give you the best life possible. Please know that your are the most important person in my life. I love you Nick. Happy one month birthday.