Tuesday, May 31, 2016

Happy Due Date - May 31st, 2016

Today is the day you were supposed to be born. I am so lucky that I was able to meet you three months before you were due, and so blessed to be able to watch you grow outside of me. Although this journey is not what I imagined the day I found out I was pregnant, I can't imagine not meeting you until now. I have had the chance to witness a miracle growing in front of me. I still remember the day that daddy said "I didn't want to say anything, but I thought he was going to grow up without nipples!" You hadn't developed everything yet when you were born, so we were able to watch you grow and develop different things as time went on. Your eyes were still fused shut when you were born! We literally witnessed a miracle grow in front of us.
This morning I knew that you weren't going to eat much because you did so well over night. I did your care and then fed you. You were sleepy so you only took about 7 ml. I hoped that since you were so tired, you would do well for your noon feed.
The doctors rounded after your 9 am feed. They weren't concerned with your one day of weight loss. They said that you weren't gaining a lot of weight, and they would like you to gain more. The nutritionist wanted to increase your feed to 60 ml every three hours. She also wants to put you on iron since you haven't had a blood transfusion within the last month. Since they don't like making too many changes at once, they increased your feeds to 60 ml today, and are going to start you on iron tomorrow. We spoke about dropping your heart rate during feeds and they said that they would feel more comfortable for you to stay this week to see how you do. Since the majority of your heart rate drops are caused by reflux, they increased your dosage of Zantac to see if that would help. Since your throat hurts when the fluid comes up, you hold your breath. We are hoping that this helps. They didn't give another time frame of when you would come home, so we are just taking it one day at a time. We changed our CPR and NG tube classes from tomorrow until Monday since you aren't coming home this week. As for you taking the bottle, they said to continue doing what we have been.
At noon you were so awake. You took 35 ml, and then the rest by gravity. You have been doing well with the gravity feeds. Lets hope it stays that way! I figured since you did so well this feed, that you would be tired for your 3 pm feed.
At 3, we did your care and you were basically sleeping the whole time. I knew you wouldn't do well with your feed. We didn't want to push you to eat while you were tired because that would just result in an episode, and we didn't need that. I held you for a while until I went to grab something quick to eat.
Since daddy was working late, I got to do your 6 pm feed as well. I did your care a little early since you woke up early, and then fed you. You had a pretty big episode where your heart rate dropped to 58, so we stopped for a bit and you got really tired. We never tried again after the episode. You took 6 ml this time.
Hopefully the Zantac works. If not, I am not sure what they are going to want to do. Hopefully they have a plan tomorrow, and if not, I will ask to see what they think will happen if you continue to have these episodes while eating. Luckily it is only around your feeds.
I am glad I got to spend the whole day with you today. We got to cuddle so much, and even the nurse was jealous that she wasn't able to cuddle you today! I hope you do well again with your feeds tonight (the same nurse is back that had you last night when you did really well) and I hope your reflux doesn't hurt much. We love you and will see you tomorrow!

Monday, May 30, 2016

High Hopes - May 30th, 2016

When we got there this morning daddy and I did your care. I then fed you and you took 25 ml with no drops in heart rate! And daddy was there to witness it all! We were so proud of you this morning.
The doctors rounded (not your usual doctors - they will be back tomorrow) and said that you were taking 27% of your feeds and that you lost 5 grams. They said that they think you need more time at the hospital until you have less heart rate drops and until you have a steady weight gain. What they don't know is that you almost never lose weight, and this is the first time you lost any weight since you were on Lasix a few weeks ago. Also, the reason your feeds look like they went down is because you were tired for two of your feeds, so they averaged in two zeros. When I asked if you were still going to be discharged this week, they said that they were going to see what the doctor tomorrow says, but they said that they think you should stay until you have less episodes. They said you may be able to come home on a monitor, but to wait to see what the doctors say tomorrow. I knew I shouldn't get my hopes up because this could happen, but how could you not!? The only change they made was that you are no longer eating over an hour, you are getting the rest of your feed by gravity.
Daddy held you for a bit and then I held you. Pop-pop and mom-mom came to visit you and it was pop-pop's birthday. He held you for a little bit and then it was time to do your noon care.
Daddy and I took care of your care at noon again. You were a little fussy before your care, so we were hoping you would do a great job with eating this time around. You ended up stopping early, and taking 13 ml. You fell asleep as I as burping you. This time, you had two instances where your heart rate dropped.
We had to leave to go to babies r us to finish getting everything we needed for you to come home. I called the nurse to see how you did and she said that you took 10 ml and then 15 ml. She said that you were pretty tired. I forgot to ask her how you were doing on your gravity feeds. I will ask the nurse that is on tonight when I call her. Other than that she said that you are doing well.
I will be there in the morning and I will hopefully be able to feed you three times tomorrow. It is hard when there are so many people feeding you. Each person may do something different or pace a little different than the last person. It is hard to judge the number of events you are having because of that as well. Anyway, I will see you in the morning. I love you buddy! Daddy does too!
**Please pray that Mason has less drops in heart rate while eating. Also, please pray that he gets to come home soon!!

Sunday, May 29, 2016

Eat for Daddy, Please! - May 29th, 2016

This morning daddy came with me to see you. The last two times that he came to see you, you wouldn't eat for him and just slept. We were hoping that he would finally get to see how well you do with the bottle.
For your 9 am care, we changed your diaper and took your temp. After the nurse bundled you back up, you fell asleep. I was hoping that once I started feeding you, you would wake up. You didn't. This is the third time you didn't take anything when daddy was there. The only three times since we started bottle feeding you! Daddy said that if it happened for the noon feed, that he was going to leave the room.
Doctors rounded between your 9 am and noon feedings. They said you were taking 37% of you feeds by bottle now, which is more than the 25% that you were taking before. The doctors asked if we were signed up for the NG tube class yet, and we told him we were signing up today (we are taking CPR and the NG tube training on Wednesday). They wanted to put you on a different floor until discharge, but the nurse said that you were still dropping your heart rate with feeds, so they said it wasn't a good idea to move you to the other floor. The nurse told us after the doctors left that you wouldn't be hooked up to monitors, so they wanted to keep you where you were. Other than that, the plan is to continue to work on your bottle feeds!
For your noon care, I changed your diaper again. You still haven't pooped since yesterday. The nurse said that it was normal for babies who have breast milk. You also were changed to a different fortifier, so that could have something to do with it as well. Hopefully you go by tomorrow.
You were awake for your noon feed. You took 25 ml this time, and daddy finally got to watch! You dropped your heart rate 3 times during that feed. You need to remember to breathe after you suck!
We left shortly after that and I called the nurse before she left for the day to see how you were. She said that for both the 3 and 6 o'clock feeds, you took 25 ml. You are definitely more consistent. She said that you only dropped your heart rate once for the last feed. She told us that our classes on Wednesday were CPR at 1 and the NG tube training was from 2-3:30. I am assuming since we haven't taken the classes yet, that you won't be coming home on Wednesday. We still don't know when we should bring in the car seat either!
We are going to come again tomorrow for two of your feeds. We then have to go to babies r us to get more things for you so that we can be ready for you to come home. I can't believe I am actually saying these things. We have been in the hospital so long already, that it just feels natural to have to go to the hospital to see you. I don't know what I am going to do when you are home (besides snuggle you all the time)! We hope you have a great night and you continue to improve on your feedings. We love you buddy!!

Saturday, May 28, 2016

Quiet Day - May 28th, 2016

This morning was the first morning that you took more than 8 ml for me at your 9 am feeding. Usually you are tired and don't take much, but this morning you were awake and took 22 ml for me! You did such a great job. It seems like you are now averaging 20 ml per feed, which is great!
I held you for a while after your 9 am feed. I only put you down once to go to the bathroom, and then it was almost time for your 12 pm care. I changed your diaper and then fed you. You did great again, and took 21 ml. Again, I held you until we went to lunch.
The doctors rounded late today. Since it is memorial day weekend, the doctors were not your normal doctors. They didn't really say much at all, except for the fact that you are on PO feeds and are continuing them throughout the weekend. Other than that, they didn't say much.
After lunch, daddy, Mike, and Kelly came to see you. Daddy was going to stay for your 3 pm feed so that he could see how well you do. Last time he came for your feed at 3, you only took 1 ml because you were so tired. When we walked in, the nurse said that you were still awake, and haven't slept since before your noon feed. I knew that wasn't a good thing for daddy, and that he would most likely not get to see you eat again. That was the case - when I put you on your side to get ready to eat, you immediately fell asleep. Hopefully tomorrow he will get to see you eat since we will both be there for your 9 am feed.
We left at about 4 pm, and I called your nurse before she left for the night to see how you did for your 6 pm feed. She said that you took 25 ml for her, which again, is great! She will be back again tomorrow.
We are going to come early tomorrow morning to see you. We will stay for at least two of your feedings. We hope you do a great job tonight, and can't wait to see you in the morning. We love you so much and can't wait to see what this week brings! Daddy, Kelly, and Mike got your stroller, pack n play and mamaroo all set up (mommy was stressing just a little bit)! We are almost ready for you to come home! Love you buddy!

Friday, May 27, 2016

Something We Have Been Waiting to Hear - May 27th, 2016

This morning I came in and you had another eye exam. They said they just wanted a baseline, and they knew that you had just had an eye exam done on Tuesday. They said that your eyes looked great.
At 9, we did your care and then started to bottle feed you. You did about the same as you did yesterday at 9 am. You took 8 ml. Over night the nurse had you drinking around 20 ml, so I was a little upset that you didn't take as much. I held you after we did your bottle. Speech came and said that she wanted to come for your noon feeding.
The doctors rounded as I was holding you and said that we are going to keep going with the feeding plan. They said that you would need a hearing test and that they would schedule that. They said that you looked great. I asked if you could come home on the NG tube and they said yes. We could continue working with speech and getting you to eat even while at home. I asked if you would have to be on gravity feeds and they said no, that they could contact insurance and we would be sent home with a pump. I asked what the requirements would be for you to come home and they said that you can't have an episode that required stimulation within the last 5 days, and they checked and you haven't had any episodes that required any in a while. You would need to pass the car seat test which is sitting in your car seat for an hour without having any episodes. You need to have the caffeine out of your system, which it should be pretty soon anyway. The doctor then said "lets make it a goal to go home mid to late NEXT WEEK! You read that right! NEXT WEEK! AHHHH! Again, this is pending your car seat test and not having any episodes that require stimulation. I can't believe that we are actually talking about possible discharge! We have been waiting forever for that to happen! June 3rd will be 100 days in the NICU. Now we have tons of things to do to make sure we are really ready for you to come home!!! The doctor told me about the follow up appointments we would have - We are going to be busy! You have neurology, ophthalmology, speech, neonatology, pediatrician, urology, and early intervention. Crazy! They were talking about your 4 month shots, as well as the shot for RSV for you to get in September. Ahh!!
At about 11 am, mom-mom and I went to get some lunch before we came back for your speech appointment. She watched as I fed you, and then told me to try keeping the nipple in your mouth and just tipping it to the side every 3 seconds instead of fully taking it out of your mouth. You ended up taking 48 ml for me!! We were all SO excited about it! You did amazing! The nurse called the doctor to ask if she could just gravity feed the rest and he said yes. You stayed awake for a while after that. We ended up leaving before your 3 o'clock feed, but I figured you would be pretty tired from not going back to sleep and from working at getting 48 ml.
When I called to see how you were doing, she said that you took 15 ml at 3 pm and she was still feeding you, but you had taken about 15 ml for your 6 pm feed. Practice, practice, practice!
We are so excited and can't wait to see what happens next week. I am trying not to get my hopes up, because we all know things can change so fast. However, I am looking forward to you being home! We can't wait to experience what everyone else is able to experience after giving birth. We love you and can't wait to welcome you home!!

Thursday, May 26, 2016

Keep Eating Mason! - May 26th, 2016

When I got there, your nurse told me that you only had one episode over night, but other than that you did really well with your bottle feeds. I got there in time for your care and to bottle feed you. You were sort of sleepy, but were still showing cues. You took 8 ml for me. I held you after your feed and waited for the doctors to round.
When they rounded this morning they said that they wanted to increase your feeds to 55 ml every three hours. They said that you were taking 25% of your feeds by bottle now (so excited about that). They said that we need to continue working with speech with your feeds. Your eye exam will be next week. You are on a human milk fortifier right now, and they said that you can't come home on that specific fortifier, so they changed you today to a fortifier that you will be able to come home on. I also found out that they stopped your caffeine yesterday and you haven't had any episodes that weren't related to feedings!
For your 12 pm feed, you took 10 ml. Speech came for that feeding and showed me more tricks just incase certain ones are not working on you. Originally we were using a pillow under you and you were laying in front of me horizontally on your side. Today, she showed me how to hold you in front of me, on your side, vertically, without a pillow. I would have to say that todays positioning is more comfortable. She told me a few other things that she wanted to work towards with you, like beginning to keep the bottle in your mouth but tilting it to the side so that when you suck you don't get anything in between drinking. Speech will be back tomorrow to work with you again.
Before speech left, I asked a couple questions that I was curious about because the doctors said it was up to speech. I asked if you could come home without taking full feeds, and they said that it happens all the time. I also asked about taking your feeds over an hour and how that would work. They said that you wouldn't be able to go home until your feeds were gravity feeds. That is something that we need to work on. They said that as long as you don't keep having episodes, we will continue to bottle feed and that we will not need a swallow study. Let's hope that you continue to improve everyday!
I told daddy that if he came at 3 pm, he would be able to see you eat. Unfortunately, you decided you wanted to sleep instead of eat. You took 1 ml and then fell asleep. The only good thing about that, is that you would get some rest and hopefully be wide awake for your next feed at 6 pm. Hopefully daddy gets to see you eat soon! We left after your feeding because mommy was very tired - I fell asleep on the car ride home!
When we got home, I had a few things to do before I could lay down and rest. I called your nurse at about 6:45 so that I could see how you did with your 6 pm feed. She told me that you were wide awake and that you took 30 ml! You did an amazing job! She said that she wished that we were there for it, but I told her that I was just happy that you took 30 ml! I really like the nurse that you had today, and she is going to be there again tomorrow.
I hope that you continue to do well with your bottle feeds. I can't wait to hear how you do overnight. It seems like you keep doing better with practice every feed. I have a couple questions to ask during rounds, and I can't wait to hear the plan (if they have one yet) from here on out. You are doing so well!
I will see you in the morning. I can't wait to feed you again tomorrow! Every feed is one more step closer to you coming home! We love you and are so proud of how far you have come. See you in the morning!

Wednesday, May 25, 2016

Happy 3 Months! - May 25th, 2016

Today was our first full day at CHOP. We are back to our old schedule. Daddy dropped me off on the way to work this morning around 8 am. I came in to say good morning to you and then went to get some coffee and a muffin (Wednesdays at CHOP they have free coffee and muffins). I quickly went back in so that I did not miss rounds.
When the doctors came by, they didn't really have anything different to say. They said that speech would come in and evaluate you. They also said that they wanted to try you off of caffeine, but one of the doctors who worked with you the last time said he didn't know if that was a good idea. I think they were holding off on doing anything with that. Other than that, there was nothing new. They welcomed us back, and said they are sad to see us back, but happy we were there.
I held you for a bit after your care. The nurses got a message that there would be someone coming around for professional photos of kangaroo care if I was interested. Speech stopped by and asked if it would be okay for her to come around at about 11:40. I said that I was okay with it, but I just had to go eat lunch quick. I had some lunch and made sure that I was back for 11:40. Speech came and asked for your history. I told her everything we have been through. She said that she was going to start with paci dips. You did great. Then she said she wanted to work on the bottle with you. I was very nervous about that. She listened to you swallow and worked very slowly with you. You did fine while working with her. She then asked me if I wanted to feed you. Of course I did. I did exactly what she told me to do. You did well. You took 11 ml out of the 52 you need. She then said that she doesn't think you need a swallow study, and that you just need practice eating because you forget to breathe. When she taught me how to feed you, she said that I needed to count to 3 and then take the bottle completely out of your mouth so that you would swallow and breathe. It is a long process, but you need to practice.
I ended up signing up for the professional photos. The photographer was a respiratory therapist at the hospital and was a photographer on the side. He took a lot of pictures with us, and since you are three months today, he also took some photos of you and I with your board. He said that we would get the photos back next week.
At the 3 pm feed, I was able to try again. This time, you took 30 ml in about 40 minutes. The speech person came back after I was finished feeding you and I told her how well you did. She said that she was worried because some babies do well with one feeding, but not the next. She put up a sign that said exactly what the nurses needed to do to feed you so they could continue to do it throughout the night.
I called after your 9 pm feed and the nurse said that she saw the brady and desats that I was telling them about earlier. She said that she was watching your monitor as she was feeding you and when she saw your vitals go down she would stop. She said that she was being "strict" like the paper said to be, but it didn't seem like she was doing the 3-4 seconds and taking the bottle out of your mouth completely. I am going to call back and tell her that that is what she needs to do. I do feel bad calling and telling her what to do, but I also don't want you to go backwards when we had some progress today. Hopefully she takes it okay.
I will be there early again tomorrow and I hope you continue to do well. We love you and are so proud of you for today!

Tuesday, May 24, 2016

We Have Arrived - May 24th, 2016

This morning I decided to stay home for your 8:30 feed so that I could get stuff done at home since now I will be spending long days at CHOP. I got a phone call at abut 9:45 from Virtua, telling me that the transport team would be coming at 11 am. I quickly finished bagging some milk, got together what I would need, and went to the hospital.
When I arrived at the hospital, the eye doctor was examining you. I didn't think that he would come today since you were leaving. However, he examined you and said that your eyes look better than they did last week. Phew! We could use some good news!
I took a few things to the car really quick that we wouldn't need at CHOP. When I came back they were waiting for me to sign papers and to get you ready to go. I asked them if I could ride in the ambulance with you and they said that I could. I said goodbye to some of the nurses, and off we went.
The ride was uneventful and they said that you slept the whole time. I stayed with you as we went into CHOP and into your new room. We are on a different side this time, which is even less private than your old room at CHOP if you could imagine that. As we walked in, one of my favorite nurses that you had before was there and we both were so excited to see each other again. We hugged and talked about how it was luck that she was admitting you because you now have a new team of nurses (and she is not on that team - the team was just short today). She let the other team know that we were back, just incase they wanted to come visit you. Luckily, we had the same team of doctors, so everyone knows what is going on already.
I haven't had anything to eat since breakfast, yet I was nervous that someone was going to come in and see you and I wouldn't be there. I had to eat, so I asked the nurse to call me if anyone came by to take a look at you. On my way back from eating, I saw a girl I used to talk to and have lunch with sometimes when we were there before. Her daughter has a g tube, and I was asking her questions about it just incase you have to have it as well. She said there is a class that you have to go to on how to learn to take care of it and change it. I told her I would be nervous and she said she was, but now it's easy and she doesn't mind it. She is going home on Tuesday, and she was telling me that you won't be able to go home until you are able to take some of your bottle by mouth. I thought that we may never go home if that was the case. However, I said something to the nurses about it when I got back to your room, and they said that isn't the case. Phew.
Daddy and mom-mom came and we stayed for a bit. You seem nice and relaxed. Speech will most likely come tomorrow morning. We were told that your swallow study most likely won't get done until the end of the week. CHOP likes to evaluate you on their own without Virtua, to see what they think is necessary. So before you get the swallow study, they are going to evaluate you as well and I am assuming they will say that you need the study done as well.
I will see you in the morning. We love you and hope you have a relaxing night in your huge crib! Stay strong!!

Monday, May 23, 2016

Back to CHOP We Go - May 23rd, 2016

This morning Grammy and Poppy had to go back home. I came at my usual time and did your care. Speech came at 8:30 to work with you. She said that all they were going to do for now is to do pacifier dips (putting two drops of milk on a pacifier and giving it to you) for 15 minutes. They said you need to practice coordinating your sucking and breathing. She also said that sometimes your suck is uncoordinated, but you have a strong suction. She said that she would be back again at 11 to do the same thing to see how you do. This time your RR was high when you sucked on the paci. We need it to be much lower before feeding you through a bottle.
I held you for a while after speech worked with you. I put you in your bouncer at about 10 and went to the Ronald McDonald room for a snack (which there wasn't any). I then came back and sat with you for a bit. The NP came in and said that she was glad to see me. She said that the team was talking about the next steps for you. They were all in agreement that if CHOP would do the swallow study before 40 weeks, that we would be sent to CHOP. They said that they (Virtua) wouldn't do anything before 40 weeks and they didn't want you sitting around if you were able to get the study done earlier. They said that the doctor was going to call after lunch, and they would let me know. About 10 minutes later, one of your neonatologists from CHOP came to see you and she said that she didn't think CHOP would do the swallow study earlier, so we would probably stay at Virtua. The doctor was still going to contact CHOP just incase.
We did your care early so that speech could work with you again. This time you were more tired. You didn't suck much, and I saw you do some of the same things you would do when we tried breastfeeding. The SLP said that this is all we can do for now, until you learn the skills needed to bottle feed. She stopped earlier than the 15 minutes because you wanted nothing to do with the paci anymore. She told me that she has learned what you can do, and so now it was my turn to do the paci dips, and I could do them without her in the room.
As I was talking to our neighbors (they went home today and I was so excited for them), the NP saw me and said that CHOP said that they would do the swallow study on you. Back to CHOP we go. I cried, but I know it is the best thing for you. They said that since you are not an emergency case, that they could come whenever they had a chance. Which means you could leave in the middle of the night. They said you would go within the next couple days.
Daddy had a lot of questions about why you were being transported back if they could do the swallow study at Virtua, so we called in the NP to explain everything to us. She said that since you are so fragile, they wouldn't even feel comfortable doing the study with you at 40 weeks. She said that they think you will need to come home with an NG tube (which you have now) or a g tube (which requires surgery). CHOP would teach us how to take care of whatever it is you need to come home with. They said that sometimes babies get sent home with the NG tube to see how they will do, and after about a month if they still can't take food by mouth, they will then put in the g tube. We still have many more questions to ask once we get to CHOP, but for now that is about all we know. Just waiting on the transport team to come get you.
We went back to the hospital tonight to see some of your nurses to say goodbye just incase we don't see them again.  You now weigh 6 lb., 4 oz. The nurse said that the pre-cert will take 24-48 hours, so you may go tomorrow afternoon or night to CHOP. We stayed at the hospital for a while, and we are exhausted!
We will see you tomorrow. We love you and are so proud of how strong you are. Hopefully we figure out what is wrong soon!!

Sunday, May 22, 2016

Happy Grandparents - May 22nd, 2016

Since we got home late last night (technically early this morning), everyone was exhausted. This was the first time that mommy didn't come see you at 8 am. Instead, I let everyone sleep in and I even got to sleep a little more than usual. We went to have an early lunch, and then we came to see you.
When we got there, you were in your bouncer. I noticed that there was a sign on the wall for your individualized developmental care plan. It said that when no one is there to hold you, they are to put you into your bouncer, as it helps with digestion and development. If we are there to hold you, we are to make sure to change the way we hold you every hour. You are favoring turning your head to one side, and they want to break that habit.
Daddy got to hold you for a little bit when we got there. After he was finished holding you, he told grammy to wash her hands so that she could hold you for the first time. She loved every second of it. While grammy was holding you, mom-mom said that her and pop-pop were on their way to see you. Since only four people are allowed in the room at a time, they had to wait outside until someone came to switch spots with them. Since we wanted mom-mom to hold you as well, she came in and poppy left. Mom-mom then held you. Her first NJ grandson! Grammy left and pop-pop came in to hold you. Daddy and poppy went to the grocery store to get some things for dinner and then poppy held you when he came back. I am sure all of the grandparents were so happy to be able to finally hold you!
Daddy did your temp for your 2:30 care and I changed your diaper. Since you hate your temp being taken and your diaper changed, daddy didn't want to be one to make you cry for your 5:30 care. I took your temp and changed your diaper. The nurse told us that your feeds went up to 52 ml every 3 hours. Your feeds are still over an hour. We left after your care at 5:30 so that we could go eat dinner.
While it was just me and grammy in the room, the LC came to see me. The nurse was also in the room. She came to see how I was doing and I asked if either of them knew how long they would wait before doing a swallow study. They said that they usually wait until you are 40 weeks, which would be May 31st. However, the LC said that they want to recommend that they do it at 39 weeks instead so we could get the ball rolling just incase something was wrong. She said that the doctors listen to the team to a certain extent, but the doctors definitely listen to what the parents have to say. She said that we have to be squeaky wheels. She said that if I ask to have it done a little earlier than 40 weeks, it will be taken into consideration more than if they were to ask. So tomorrow while the doctors round, we are going to talk about what to do.
I just got off the phone with your nurse tonight and she said that you are now 6 lb. 2.5 oz. She said that this is the third night that she has had you in a row and you are great for her at night. She said that all you do is sleep through the night and you are awake during the day which is definitely a good thing! She said that you love your bouncer as well. She had nothing else to report, other than that you are doing great for her.
Grammy and Poppy have to leave early in the morning, but they loved that they got to hold you finally. I will be there at the usual 8 am tomorrow morning. At some point daddy will be by to see you as well. We love you and hope you have a great night!

Saturday, May 21, 2016

Short and Sweet - May 21st, 2016

This morning grammy, poppy, daddy and I came to the hospital to see you before we had to go to Matt and Courtney's wedding. The nurse said that you did great last night with no episodes. I did your care and then held you for awhile before we had to leave. You had two episodes while I held you. One was because you were sucking on your paci and you made this weird noise and I pulled out your paci quick and your heart rate dropped and you started coughing. The other was when you were sleeping. I held you for about an hour and then we had to leave.
Since I wasn't there all day like I usually am, I don't really have much else to report. I just got off the phone with your nurse for tonight and she said that you had one quick episode, but other than that you are doing well. She said that you were in your bouncer and that you now weigh 6 lb., 1 oz. She said that there were no other changes.
We will be there again to visit tomorrow. We love you and hope you have a great night, free of episodes. Can't wait to see you buddy!!

Friday, May 20, 2016

Devastating News - May 20th, 2016

So, if you recall from the post yesterday, the NP was going to fill me in more about what the ENT said about your tongue tie. So, when I came in this morning, the NP came and told me to sit down so she could tell me what was going on. She said that there are two types of tongue ties - one that is in the front that is easy to clip, and one that is in the back that would need surgery to be fixed. Of course you have the one in the back that would need surgery. The doctor said that he didn't feel comfortable with fixing it right now because you would have to have anesthesia. I asked what some of the long term effects would be of not having surgery and she said that it is possible that you would have some speech issues and you may not be able to do things such as licking an ice cream cone. She said that they would be able to reevaluate you in a few months if we still wanted to do something about it. With all that being said, she then told me some devastating news. You would not be able to breastfeed because your tongue can't stick out far enough to draw out enough milk. I immediately got tears in my eyes and tried to hold it back. She told me that it was okay to cry, and she felt bad giving me bad news on a Friday. She then gave me a hug and left the room. I held you and just sat there crying. Nothing is easy on this journey.
The LC came in to speak with me about their plan to start bottle feeds. Speech did the same. They were going to try to do some bottle feeding at 11:30 and 2:30 to see how you would do and they would come up with a plan after that.
At your 11:30 feed, you were tired. You did not sleep since your 8:30 care. I knew you would be exhausted and probably not do so well. Speech came in and showed me what they would be doing with you and then she started to try to bottle feed. She placed the nipple to your mouth and says that if you did not open, she would not feed you. You had to be ready to eat, and they would not force you to eat anything. You opened your mouth a few times, and you choked a little and your heart rate dropped. She let you come back and waited for you to be ready to try again. The second time it happened she called it quits.
At your 2:30 feed, I wasn't there, but I had asked her to call me to let me know how you did. When she called me, she said that you were wide awake and cuing. Unfortunately, the same thing happened this time, as last time. She said that some preemies just have a difficult time eating, and some learn after a few feeds. She said that they would try again on Monday, and they would work with you every day. She said that if you didn't start to get the hang of it, that they would have to take pictures of you while you are eating to see what is going on. I am assuming they meant a swallow study, but they didn't say that. I will ask tomorrow.
We had a rehearsal dinner to go to tonight so we weren't there after 2, but I called at 10:30 to see how you have been doing. The nurse said the only new thing is your weight. You now weigh 6 lb., 0.7 oz! She said other than that everything is the same. Nothing new to report.
Grammy and Poppy are here for Matt and Courtney's Wedding tomorrow. We are going to come see you in the morning. We won't be able to stay all day like mommy usually does, but at least we will get to see you for a little bit before we go to the wedding. Mommy and daddy love you so much and are praying that you learn how to eat soon. We hate to see you have so many hurdles. However, we know how strong you are and we know that you will get over them. We hope you continue to have a good night and that you get some rest. Night buddy!

Thursday, May 19, 2016

Happy 12 Weeks! - May 19th, 2016

Today we had the same nurse as yesterday, and the nurse from last night had spoken with her about using a shield for nursing. She wasn't sure why we weren't allowed to use it, and wanted to make sure that everyone was on the same page, since preemies usually use a shield. The nurse also told us that the night nurse put you in your bouncer and you loved it. You cried when she took you out of it.
For our 8:30 feeding, I didn't want to try NNS because I didn't want to tire you out for our 2:30 session of NS. While I was changing your diaper, the nurse went out for rounds. When she came back in she said that the LC was going to be there during the 2:30 session in addition to speech. Soon after, the LC came in to speak with us about trying to come in at your 11:30 feeding. She wanted to have you do NS, and I told her that speech wanted to be present every time that we nursed. She didn't know why, and she said she wanted to still do 11:30 as long as the doctor said it was okay. I saw the doctor a little later in the hallway, and she said that she is all for it. So at 11:30, we tried NS with the LC.
The nurse also said that during rounds they said your cannula could come off, and your feeds were going to increase to 50 ml every 3 hours. We are almost to the 2 ounce mark! Hopefully you have your cannula off for more than a few days!
I made sure that I was all ready for your 11:30 feed. I went to the bathroom, got a snack and coffee, and pumped a little before your feed. The LC came in to make sure that we were ready, and she started getting everything together. She put a pillow behind my back and had me shift to one side of the chair, put a rolled up blanket under the boppy, another two rolled up blankets under the side of the boppy, and gave me a rolled up pillow case for under my breast. She wanted to make sure that your head was propped up higher than your feed because of your reflux. I was much more comfortable that way than the previous ways we have tried. You latched, and the LC gave me different tips and tricks to help you. We worked at this for about 20 minutes, and they weighed you. (They weighed you before as well to compare.) Right before weighing you, the LC said to me "expect nothing." So, I expected nothing. After she weighed you, she said that you took 4 ml. My thought and her thought too, was that 4 ml is better than 0 ml. We have to start somewhere!
After your 11:30 feed, you stayed awake and refused to go to sleep. I was with you the whole time until your next feed and you did not go to sleep at all. You looked wide awake so we were going to try again with both the LC and SLP there. However, as soon as we got all set up and got you settled, you passed right out. You were so sleepy from not taking a nap in between feedings. We weren't able to do anything that time, but I was thankful that we were able to at the 11:30 feeding.
I was going to go home to take a nap after the 2:30 feed, and on my way out I saw the SLP and LC talking. I know that the SLP and LC have different thoughts on breastfeeding and ways to go about it. The LC said it would be okay to use the shield, and the SLP didn't want us to use it. The SLP wants to be present for all feedings, and the LC doesn't think that the SLP should have to be there (as long as a nurse is there or the LC). The LC thinks we should try more than one time per day, and the SLP thinks only one time is good. I am assuming they were talking to come up with a plan.
I called right before day shift ended to see what was going on with you and she said that you were doing well without the cannula. She said that ENT doctor came to assess your lip and tongue tie and said that the risks outweigh the benefits because they would have to give you anesthesia. So I guess more pain for mommy, but it is worth it. The LC said she would give me exercises for you to work on to try to stretch your tongue. The nurse also said that the LC, SLP, and NP were present for the assessment, and they all came up with a plan on where to go from here. They are going to speak with me about it tomorrow.
As the LC said today "today is a home run!" I consider it a success, knowing that I can use the shield, and that you transferred 4 ml. Your feeds also increased to 50 ml, and your cannula came off. A lot for one day, and you made it through. As always, we are so proud of how strong you are!
We came to see you again around 8:30, and you now weigh 5 lb, 15.4 oz. So incredibly close to being 6 pounds! You are getting so big! I can't believe how big you have grown in the last 3 months!
We love you and although we have a busy weekend, we will be around to see you and feed you! We will now be practicing daily, so it is important to stay on that schedule to give you the best chances of learning to nurse (and of coming home quicker). We will see you tomorrow morning buddy. Get some rest so you can be ready for tomorrows feeds!

Wednesday, May 18, 2016

Eat Please! - May 18th, 2016

I expected to see one nurse on today and came in to find another nurse on. She asked me what I did for your care and I told her temp and diaper. I was able to do those for you (with the exception of your 11:30 because I was talking to your neighbor and lost track of time) for the rest of the day.
The NP came to see you and said that you looked good. I asked her about your weight gain and she said that since you look good physically, she thinks you are just gaining weight. She doesn't think that it is from fluid retention, but will continue to watch you. She also said that she wanted to wean your cannula down to .5 to see how you would do because everything was looking good.
We tried NS this morning but you wanted nothing to do with it. You would latch, but that is as far as you would go. We are going to try again tomorrow at your 2:30 feed since the other speech therapist would be there. Hopefully we do better tomorrow!
We tried NNS today at 2:30, and again, you latched but sat there. You don't really want to do a lot of work! We can keep practicing, but one of these times you have to start to eat so we can get you home!
Daddy and I came back later because we heard that one of our favorite nurses was going to have you. We got to give you a bath all on our own tonight! I would have to say the best part of the bath was when you peed on daddy! He used to laugh when you peed and/or pooped on me, well now he gets a taste of that as well! It was bound to happen sometime. We stayed while I held you and talked to your nurse for a while until she had to start taking care of the other babies again. She will be back on tomorrow, so I am sure we will go visit her!
You now weigh 5 lb., 14.5 oz. We are pretty sure that tomorrow night you will be 6 pounds. It's crazy to think of how small you were, and now how big you are. You are growing so well. Now we have to get you to eat!! Maybe tomorrow you will be more interested. We don't need you to stay even longer because you refuse to eat. Your due date is coming up pretty soon, and I'm almost positive that you won't be coming home until after your due date. But at least you are here with us now (even if it isn't at home)!
We love you and hope you have a great night. We know we don't have to worry at all since know the nurse taking care of you pretty well from when you were first born. We will see you tomorrow buddy. Rest up so you can do well with NS tomorrow!!

Tuesday, May 17, 2016

Possible Growth Spurt? - May 17th, 2016

This morning your nurse said that you now weigh 5 lb. 10.3 oz. and that you were now 18.7 inches. She said it was a big weight gain and I brought up the fact that the day before you had a pretty big weight gain as well. She said that one reason for the big weight gain could be that you are retaining fluid again, but they were going to look at your weight gain chart and see how it looked over a weeks time. To my knowledge, they did not do that yet, but we did make sure that you looked good physically, and you did not look swollen anywhere. There still could be water retention in your lungs, and that is what they wanted to watch out for since that happened last week.
For your 8:30 am care, we tried NNS again since speech wasn't here today. You didn't do as well as yesterday, and kind of just sat there like you have been. Your RR was getting a little high when you were on, so I took you off and just held you. I held you until about 10:15.
For your 11:30 am care, I did your diaper and then kept you in your crib while your feeding ran. I needed to run some errands, and then when I came back I wanted to hold you. Running errands took a while, so I didn't get back until 2 and by the time I got back, it was time for me to pump again.
When I got back, I noticed a little note on your table saying that the eye doctor came and that your eyes were still stage 2 zone 2, and that they didn't get worse than last week. The doctor said that he would be back again next week, and was not ready to come in 2 weeks because a lot could still change depending on your medical status. So, eye exam again next week.
I left you in your crib again for your 2:30 pm care, just so that I could eat a little something in the Ronald McDonald room. After I ate (since I didn't have time to while running my errands), I came back and held you when your feeding was finished. I left at about 4:30 pm.
Tomorrow we are back to doing NS, and I am hoping that it goes well. I feel like learning to eat is going to be a long process, especially because boys take longer to learn than girls. However, I am very optimistic about it, because you did take 43 ml in one session before! So I know it is possible!
We love you and are continued to be amazed by you. You are growing so much and we can't wait to have you home. I will see you in the morning and I hope you have a great night!!

Monday, May 16, 2016

Trickster - May 16th, 2016

I went in this morning to see that you now weigh 5 lb, 8.2 oz. You definitely do not have any issues gaining weight! You still had your cannula on at 1 liter. The nurse said that you had two episodes on night shift. Other than that, nothing else changed.
For your 8:30 am care, I noticed that your butt was red again. I had the nurse look at it and she said that since you had a couple red bumps, that you had a diaper rash and she was going to have the doctor come look at it. The doctor ordered a special ointment to put on so that we could stop it early. She also said that we didn't need a CBC because you didn't look sick. (This was a different doctor than yesterday.) We then did NNS since I didn't know when speech was coming. Usually, you just latch and then sit there. Today, you decided to suck for 20 minutes! After 10 minutes had passed, I was going to pull you off, but the nurse said that since you were doing so well, to keep you on for a bit longer. You were still going after 20 minutes, so I figured I would pull you off then so you didn't over work yourself. I held you until your next feeding.
At 11:30, I was going to skip NNS since I didn't want you to get too tired. Speech came in and asked if 11:30 or 2:30 would be better and I said 2:30 since you almost always sleep for your 11:30 feed. She said that she would be back at 2:30. I held you until mom-mom and Fran came. We went to the Ronald McDonald room to eat, and then came back to see you again.
For your 2:30 care, we tried NS. You decided you didn't really want much to do with it. You latched a few times, but wouldn't do too much. You kept closing your eyes. We joked around and said that since daddy thinks I "trick" you with NNS, that you were "tricking" me now that it was time to do NS. They weighed you before hand and weighed you after to see how much you took. You only took 3 ml, but like I said to them, 3 is better than none! We decided that since you have your eye exam tomorrow (and no one from speech will be in tomorrow), that we would only do NNS. If you latch and act like you did this morning, she said to do it for 20 minutes. If you just sit there like usual, she said to do it for 10 minutes. I am hoping that you are like you were today, tomorrow. She also said that from now on, we would do NS at your 8:30 care since that is when you are the most alert and willing to try. Wednesday will be the next NS session.
Daddy came while I was holding you and so I let him hold you for a bit. Pop-pop came to visit you as well. Lots of visitors today! We stayed for a little bit and ended up leaving before your next care.
I am so proud of you for doing so well at the NNS and for even attempting NS. I know you are just starting, so it will take a bit to get the hang of it. We love you and we can't believe that next week you will be 3 months old. Crazy! You have come such a long way! Continue growing, buddy! We love you and I will see you tomorrow!

Sunday, May 15, 2016

Always Keeping Us On Our Toes - May 15th, 2016

This morning when I came to see you, you looked comfortable and your vitals were good. You had a new nurse who I haven't seen before, which I was confused about because I thought the nurse you had yesterday was supposed to have you again today. She was working, just not your nurse. The new nurse came while I was pumping, and asked me what part of your care I normally did. I told her temperature and diaper, and figured since she was early and I was still pumping, that she would wait. Well, she didn't. She did your diaper and I got to take your temperature later while I was holding you because she forgot.
When it was close to 11:00 am, I put you back so we could start the process all over again. I had hoped that starting to pump 5 minutes earlier would allow me to change your diaper. She came at 11:15 and id everything before I even finished pumping again. When she first came in and looked at you, she said "you probably just put him back, didn't you?" and of course I did so I said yes. Then she said "Wow, you put him back really well. Are you a nurse?" and when I said no, she said "you should be!" Trust me, I have thought about it through this whole journey, and as much as I would LOVE to go back to school and become a NICU nurse, it is too expensive. After your care, I went to have some lunch with daddy and mom-mom and then we were going to come back to visit again.
We got back around 1 pm and daddy held you for a little while. I held you for about 5-10 minutes because I had to pump soon, and I noticed that you were breathing really heavy. I thought it was because you were moving all around and just needed to relax, but that wasn't the case. I gave you back to daddy and after a little bit, decided I would tell the nurse (especially since the doctor came in this morning and asked if I noticed that you were retracting). When I couldn't find the nurse, I saw the doctor and told her that your RR was pretty high. She said that sometimes the lead can pick up your heart rate, but I didn't think that was the case. I could hear you breathing really fast. She looked at you and said that you usually have a higher baseline, and I said not that high! She decided to put you back on the cannula to see how you would do. Shortly after, you were breathing normal again. You just needed a little boost! Hopefully you will be off of it soon.
We left after your care (that I wasn't able to do again because she comes early) and I went shopping for you at Carter's. I brought back all your preemie clothes that you do not fit in anymore, and bought you some newborn clothes that you can wear in the hospital (the ones with snaps). Now you can wear more than the same 4 things over and over again!
I called to speak with the nurse to see how you were doing before she left at 7 pm. She said that with the cannula, you were breathing great. She said that she noticed that you do better when you are held, so she held you for a while. She said she loved working with you and the girls (our neighbors who we actually happen to know!) today. She was very nice, just early and I have a schedule that has been working for everyone, but now I know if I have her, I will have to change my schedule a bit.
Tomorrow I get to bring in your bouncer so that you can do something other than lay in your crib. Hopefully you like it! I feel like we are getting closer to you being able to come home, yet still so far. All of these new things we get to try, but I feel like there is always some set back. We are supposed to start working on breastfeeding tomorrow, but with your high RR, I am not sure if they will want to. If your cannula is in and your RR is normal, we can still try, so lets hope that we can try without any issues. Tomorrow the doctor also ordered another CBC, just to make sure that you aren't sick or anything. You don't seem like it, so lets pray that you aren't!
We love you and can't wait to see what tomorrow brings. You always have something in store for us! Always keeping us on our toes. I hope you have a great night and you relax and calm down your breathing. See you in the morning!

Saturday, May 14, 2016

No Changes - May 14th, 2016

This morning when I came in, you were sleeping with your arms up again. You love sleeping with your arms up near your head. It's very cute. We did your care and I ran out to get breakfast again because I didn't get up in time to eat. When I got back, I held you until your next set of care.
At 11:30, we did your care again, and we kept you in your little crib while you ate so that I could run home and help daddy clean a few things. We ate lunch and cleaned, and then I headed back up for your 2:30 care.
After your 2:30 care, we did NNS, and then I held you until 4 pm. You looked SO comfortable as I held you this time. I know I usually say that, but I really think this was the most comfortable position that I have seen you in. It was really hard for me to put you back in your crib so that I could go home.
Daddy and I had some friends over for a cookout, so we didn't come back up. I just got off of the phone with your nurse so that I could see how you were doing. She said that you had one episode for your day nurse, and one episode at the change of shift. She said you are peeing and pooping normal, she changed you into your dark blue outfit, and that you now weigh 5 lb, 7 oz. Before we know it, you will be 6 lbs!
We will see you in the morning tomorrow. Daddy is going to come to see you and stay for a while since he didn't get to see you today. We are so happy that you are doing so well these last couple days. We hope you stay strong and continue to get better and better so that you can come home soon! We love you!!

Friday, May 13, 2016

Finally - Some Good News! - May 13th, 2016

Last night you had two episodes, both self resolved. The nurse we were supposed to have called out, and luckily the nurse we had yesterday was able to cover for most of the day. She told me that your retic count came back at 4.7 - meaning you are making your own blood!! Woo hoo! She didn't know your hemoglobin level, but said she would check after your care. I heard the doctors rounding and asked her if they would know your level, and she quickly looked it up just incase. Your level was 9.8! Higher than the beginning of the week! This means that you don't need another blood transfusion! All the prayers worked! As the doctors rounded, they asked what we thought of taking you off of the cannula. The NP told me and the nurse to decide what we thought was best. I asked the nurse what she thought, and she said we should try it. No more cannula, and making our own blood - what a great day!
I completely forgot to do NNS with your 8:30 care because I was so excited by the good news! The nurse asked me if I just wanted to give you a break since you were just weaned off the cannula, but I let her know I forgot, and I would do it with 2:30 care.
Right before your 2:30 care, speech came around to see how you were doing. She wants to start NS on Monday. She wanted us to start tomorrow, but both the nurse and I felt more comfortable if someone from speech was with us while we did it. We are back on the right track!
We did NNS at the 2:30 care, and you did great. Usually you just latch and sit there now that I swear you know we are faking you out (as daddy would put it). We did that for ten minutes, and then you fell asleep on me for a while.
As I was leaving to go home, the developmental specialist stopped me and asked how you were doing. I told her the great news. She told me to bring in a bouncer from home. She said that they have them at the hospital, but most parents like to bring in their own. We will start to put you in that next week. She also has me working with you on following a book with bright contrasting colors. I worked on that with you today. She said that she was going to work on it with you as well.
We visited around 10:30 pm, and you were sleeping. We didn't want to bother you, so we just sat with you in your room. The nurse said you basically slept through your care, which is great! You must be very tired.
We will see you tomorrow. Have a great night and get lots of rest. You still have a lot of growing to do! Love you buddy!

Thursday, May 12, 2016

Happy 11 Weeks! - May 12th, 2016

Again, this morning when I came in your head looked good, and all of your vitals were good as well. I know not to get too excited about anything, as anything can change in the blink of an eye. I asked the nurse when your blood test would be, and she said she would ask the NP. She said that it would be tomorrow. Since your color has been looking good, I hope that you started making your own blood! That would be one less thing to worry about.
I held you after your 8:30 am care. You spit up once, which had no comparison to yesterday. Just a little mouth full. Before it, you coughed, which shows me that it is reflux related. When I told the nurse about it, she asked if I thought that extending your feeds over a longer period of time would work. I told her that is what they kept doing at CHOP, so she extended them to an hour. At your 11:30 feed, you did not get sick.
The doctor and NP came to speak with us so we could ask questions. Daddy asked a lot of questions about your head and the doctor said that if it would make us feel more comfortable, they would do the ultrasound.
When I came back from lunch with daddy, the nurse told me that the ultrasound was supposed to be at 1:30 pm, and asked if I had seen them. I told her that I haven't seen them at all. They came around 2:15 and finished a little after we were supposed to start your care. The nurse said that the results would be back in a couple hours.
As I was getting ready to leave after holding you after your 2:30 pm care, you had an episode. I heard you cough first, and then it happened. Again, most likely reflux related. I turned around and came back in the room just to make sure that you were good. Once you were good, I started to leave again. This time the doctor stopped me and told me that she had the results of your ultrasound. She said that your ventricles are large, but the shunt isn't over working like we thought a couple days ago. She said she has nothing to compare the ultrasound to.
We came back later after dinner and daddy held you until your care. He took your temperature and I changed your diaper. After that we just left you alone because your feed is over an hour and we weren't going to stay that long.
I will be back in the morning. We love you and hope you have an episode free night. Stay strong and rest up. Hopefully you are making those red blood cells so that we don't have to worry about that! See you tomorrow buddy!

Wednesday, May 11, 2016

Stop Scaring Mommy! - May 11th, 2016

This morning I noticed that your head was much better than last night. The fontanel wasn't sunken in at all, and your sutures were visible, but not as much as last night. I still spoke with the nurse and NP about it just incase something were to happen again. The NP said that it was up to me and your nurse, but if we wanted to turn down your cannula from 2 to 1, we could. The nurse said that she was going to keep it at 2 until your next care just incase.
I held you as your feeding was going in. After your feeding was over, I planned on holding you until about 10:50. A little bit after your feeding ended, you started coughing and vomited. Then you vomited again and no one ever answers the call button when I press it so I yelled to your nurse. She was able to get me stuff to clean you up and stood there for a bit to make sure that you were okay. After she left, about 10 minutes later, you vomited again. This time she didn't respond when I called her, so I yelled out the NP's name. She came and I told her this was the third time this happened and you never vomit this much. She was trying to think if anything was new in the past few days, and nothing was new. I was already holding you at an incline because of your reflux (that is supposed to help). She said that she was going to continue to watch you to see if it was a one time thing.
I was afraid to put you back in your bed, but when it was 11, I had to put you back.
We did your care at 11:30 and then I left to go get you some nail clippers and a book that the developmental specialist suggested that I bring in. She suggested that I bring in a black and white book and show it to you while you are awake. She told me to let you focus on the page, and then once you were focused to move it to the left a little bit to have you follow it. Then she said to move it back midline, and then to the right.
I did a few things at home so that I didn't have to do them tonight when I got back from the hospital (maybe I will be able to go to bed a little earlier). I kept thinking about how you were doing and hoping that you didn't vomit at all. You definitely like to keep us all on our toes.
When I got back to the hospital, the nurse said you were good and that you didn't vomit at all. I held you after your 2:30 care, hoping the same would be true. You slept good on me for a while and then you made the face like you were going to throw up again. I immediately yelled for your nurse who did not respond, but luckily you didn't end up throwing up. That is when I realized it is probably your reflux and nothing more.
At your 5:30 care, I took care of your diaper and your temperature, and then I went home so that I could eat dinner. I am getting a little better at leaving some time to do some things around the house. However, I don't like leaving for too long, as I will never get this time with you back.
When I told daddy about you this morning, he wanted the doctor at Virtua to call your neurosurgeon at CHOP. The vomiting was one sign of the shunt malfunctioning. However, the doctor said that you do not have any other signs of the shunt malfunctioning, so she didn't want to contact the neurosurgeon just yet. She said that she would do an ultrasound of your head tomorrow, and if needed, she will contact the neurosurgeon. She did not want to do the ultrasound today because you had your last dose of Lasix.
Tomorrow or Friday they will do more blood work to see about your hemoglobin. Your color has been much better, so maybe your body finally decided to start making blood cells. Lets hope!! Other than that and your ultrasound tomorrow, you should be able to rest the rest of the week and weekend.
For all of you that pray, please pray that Mason's body started making its own red blood cells so we don't have to do a blood transfusion and wait even longer for his body to start making them on its own. Please pray that the ultrasound of his head comes back normal, and there is no over draining or malfunctioning of the shunt. Please pray that the medicine finally starts helping his reflux as well.
Mommy and daddy love you and we will see you tomorrow. We hope you have a nice and relaxing night without any issues. Stay strong, we know how much of a fighter you are!

Tuesday, May 10, 2016

Busy Day! - May 10th, 2016

When I came in for care this morning the nurse said that you had one episode over night and one episode for her. I noticed that your heart rate looked better than it has in a few days and same with your respiratory rate. When I was changing your diaper at your 8:30 am care, I noticed that your feet weren't as swollen either. The nurse told us that you had an eye exam scheduled for today.
I usually hold you after your care, but since you had your eye exam this morning, they needed to put eye drops in your eyes before the ophthalmologist came, so we left you in your bed. When the ophthalmologist came to see you, they asked if I wanted to be in the room and if I have seen the exam before. I told them I don't like watching, but I would stay in the room while it was happening. I made the mistake of watching it at CHOP and I don't want to see something metal holding your eyes open while they take a look at your eyes again. The ophthalmologist was very smart and kept using all this medical terminology, but in the end, your eyes are still stage 2 zone 2, with the right eye being worse than the left eye. You are scheduled for another exam next week. He said once a baby hits zone 2, they are scheduled every week for an eye exam because things can progress quickly.
For your 11:30 am care, we did the usual and I held you while your feed ran. Aunt Karen from NJ came to visit you for a while as well. I decided that I would leave when daddy and Aunt Karen left so that I could grab a bite to eat and get a couple things done at home.
For your 2:30 pm care, you had an ultrasound of your leg. We are still unsure of the results. When we went tonight for your care, the nurse said she hadn't seen anything yet, so tomorrow morning we will ask your nurse and hopefully we will know then. I am assuming it hasn't changed, otherwise I am sure they would have told us.
I left at about 4 pm so that we could get a few things done and have dinner. After that we came back up to the hospital. I was able to help you take a bath, change your clothes, and do your care. Before the nurse weighed you, she told me to make sure that I didn't get upset if you lost weight because you are on the diuretic. You did lose more weight, and now you are 5 lb., 1 oz. Tomorrow is your last day on the diuretic. You will probably dip under 5 lb. tomorrow. Your head circumference is usually anywhere from 33-34. Tonight, it was 32.5 cm. Daddy and I have been saying that we think your shunt is overworking and taking out too much fluid. I have spoken with the doctors about it a few times now, and they seem to think that everything is fine. We can now see your sutures which we were never able to see as much before. We can also see a part of the reservoir we couldn't see before. Your fontanel dips in more than it ever has. We decided that when I say something again tomorrow about it, and they say it looks fine, I am just going to call your neurologist just for comfort. I would rather say something now, than wait and have it be taking out too much fluid and it be an issue. Hopefully I don't have to go above their heads, but if I have to, I will just so that we can feel more comfortable about it.
Hopefully tomorrow you can rest up. We haven't been doing any NNS, so you just get plenty of extra snuggles with mommy after your care. We love you and mommy can't wait to snuggle you again tomorrow. I am bringing you some extra clothes tomorrow since you are outgrowing your preemie outfits! See you in the morning!!

Monday, May 9, 2016

If It's Not One Thing It's Another... - May 9th, 2016

As far as episodes go, you had a few last night so they upped your cannula to 2. They did your blood work this morning and your hemoglobin went down (again) to 8.7. Your Retic was 3.6, and they like that number to be at about 4 or 5 (or higher). I was waiting for the doctors to round to let me know their plan for the day. I figured with those numbers, they would give you a blood transfusion.
For your 8:30 am care, we did NNS. You did well this morning. I held you until you were done eating, and then I put you back because I needed a nap. I took a nap (or closed my eyes at least) until the NP came in to speak with me. She said that she wanted to do a chest X-Ray to see if they could take you off of the cannula. She said that your legs were swollen and she thinks it is because you are raised in your bed because of your reflux. She wants to try Zantac for reflux and if it works, then they can lay you flat and get rid of all the swelling. She weight adjusted your caffeine, so maybe that will help you as well. They didn't tell me this - but I noticed your feeds are over 40 minutes now instead of 30. Speech came and said they wanted to start NS, but the doctor said to wait and see what the X-Ray showed. Since the X-Ray still had to be read, I went home quick after you 11:30 care (and after holding you for your feed) to get some lunch.
When I came back from lunch, the nurse told me that they saw fluid in your lungs. She said that they were going to start you on a diuretic for three days to hopefully get rid of the fluid in your lungs and your legs. I started making a list of questions to ask the doctor.
We did your care again at 2:30 pm and I did not hold you after because I wanted to be able to ask all the questions I had. The doctor came in and sat with me as I asked a page of questions. She basically said that you most likely will need a blood transfusion by the end of the week. She said your retic count is lower than they would like it, but they still want to hold off to see how you will do with these new medications. If at the end of the week your hemoglobin is even lower, they will most likely transfuse you. I asked how long they wait to transfuse babies and she said the lowest they let it get is 7 and then you get blood. I asked how long it takes for the reflux meds to work and she said 3-4 days. They will see if the meds are working around that time, and if they are not, they will take you off of the medicine. Your RR is high, making anything with speech difficult. You can't learn to eat when your RR is high because it could cause you to aspirate. We don't need that!
After your 5:30 care, daddy and I left. I just got off the phone with the nurse for tonight and she said you only had one episode today. She said that you now weigh 5 lb., 3 oz. I asked her why you lost weight and she said because of the diuretic. She said your diaper was just 111 grams, which is 3 ounces! You are getting rid of all the fluid, which hopefully will help you feel better.
I will see you in the morning. We hope that you have a great night and you start to feel better. Hopefully by this weekend you feel like a brand new little man! We love you and love how strong you are!

Sunday, May 8, 2016

My First Mothers Day - May 8th, 2016

I got to spend all day cuddling with you for Mothers Day! There is no where else I would have rather been. I got there at 8 and there was artwork from you and a bracelet from you as well. I will keep them forever!
We did the usual routine for all 4 cares today - pump, care, NNS, hold. You did so well with the NNS, but I think you have finally figured out that nothing is coming out so you just gave up. You still latched, but just sat there. We have an appointment with speech in the morning. We will see what they would like us to do from here. The doctor also lowered your oxygen from 2 to 1.
We had a mothers day dinner at our house tonight and we went back to the hospital so that Alena could come see you. (By the way - people are very angry at her for getting to see you first!!!) When we came, the nurse that was there said that you had three episodes, and one was pretty significant - your heart rate dropped into the 140's. She also said you vomited a bit after the episode. I thought we were in the clear since you were doing so well.
I asked to speak with the doctor because I wanted her to know what I thought. The doctor came in and I told her that you haven't had episodes in a while and now you are getting pale, having episodes, and your heart rate is high. I told her that I think you needed blood, and that I understand why they were holding off. I said that I was also concerned with the vomit because of your shunt, and that is one of the symptoms of the shunt not working properly. Both her and the nurse said they think everything is fine neuro wise. She said that they were going to do a CBC and RTIC in the morning, with possibly more labs to see if they can figure out what is going on. I guess for now all we can do is wait. The doctor said we are all on the same side, just not on the same page. Guess we will talk again tomorrow.
As for today, I am so happy, blessed, and thankful that you made me your mom. It was a very emotional day for me, as I never imagined that this is how I would spend my first mothers day. However, I got to spend the day cuddling with you, which made it much better. I'm glad you had such a good day, but a little sad about tonight. I know you will do fine, but just hard to hear after a good day!
I love you so much and I will be there in the morning when they do the blood work. Hopefully they figure out something to help you, because I feel like we are just taking steps backward at this point. I hope you have a better night tonight buddy! We love you!

Saturday, May 7, 2016

A Little Better - May 7th, 2016

I got some sleep last night after the nurse told me to go home and have a glass of wine. I did just that. I came to the hospital nice and refreshed this morning.
I came for your care at 8:30. I started changing your diaper again since your poor butt isn't so red and/or bleeding. After that I had a hair appointment that mom-mom got me for mothers day. I tried SO hard to make it back for your 11:30 care, and I called on the way to the hospital to see if your nurse would wait. She did.
When I got back she told me that you had two episodes while I was gone. Since I wasn't able to do your non-nutritive sucking (NNS), I did your paci-dips. You had an episode while I was doing that and the nurse said that sometimes babies just keep sucking and forget to breathe. I stopped the paci-dips just incase. I continued to hold you for a while until mom-mom came and brought me some lunch. I would forget to eat if people weren't asking me what I wanted all the time.
For your 2:30 care, we did some NNS, and you did great. You latched right on (however - a shallow latch) and did well for a little bit. Then I held you until about 30 minutes before I had to start the process over again.
At your 5:30 care, we again did NNS and you did well again. The nurse was happy that you were calming down and you weren't having any episodes.
The developmental specialist came in while I was pumping and asked me how everything was going and to tell her about how you took 43 ml from me. I told her how I thought you needed a blood transfusion and how I think you would be doing much better with your feeds if you had one. She said that she doesn't think that you getting pale and having all of the episodes are related to you breastfeeding at all and I would have to agree with her. At first I was nervous that that was the case, but looking back, you are still getting pale and having episodes, so I just think a blood transfusion is needed. Since they won't give you one because they want you to make your own blood (which I understand), I think your feedings will suffer a bit. I guess we will see on Monday when we have a speech appointment and your blood work.
You now weigh 5 lbs, 4 oz. By the time you get out of the NICU, you are going to be like 8 lbs! It's crazy! Keep growing buddy!!
Mommy will be there in the morning and daddy will come at some point. We love you and hope you have a great night. We will be there to cuddle you all day!

Friday, May 6, 2016

More Episodes - May 6th, 2016

I got there this morning and was able to meet with speech. We tried to do some nutritive breastfeeding but you weren't really wanting to do much. Speech asked if we could get a consult for your lip and tongue tie. She also said that you had a shallow latch, which hurts mommy. We switched pretty quickly to non-nutritive, and from there, speech decided that we were not going to do any nutritive feeds, only non-nutritive. This weekend, my goal is to do non-nutritive feeds, and paci-dipping where we dip your paci in the breast milk, and put it in your mouth so you learn to swallow better. Then we will meet with speech again on Monday.
I held you during your feed and then I had to go turn in my car since the lease was up. I told your nurse that I would try to be back for your next feeding, but probably wasn't going to make it until your 2:30 feeding.
I got back at 1:30 pm. The nurse told me that you had 6 episodes while I was gone. I didn't feel comfortable doing non-nutritive, so we didn't. It was time for me to pump, and then to do your care. Daddy and mom-mom came for a bit. You decided you were going to have a few episodes, and turn pale again.
The nurse said she thinks that you are going to have to have a blood transfusion - exactly what I told the doctors yesterday. I told them this is what you do when you need blood, and they told me that they were just going to watch you because you needed to start making your own blood. I told the nurse what the doctors said and she said that she was going to speak with them because she has seen a change in you already in the few short days that you have been there. I told her your heart rate is never over 200 when you get mad and it has been for the last week or so. I also told her that your heart rate is usually in the 130's-140's range and it has been in the 170's-180's range. Increased episodes and high heart rate along with being pale are your signs that you need a blood transfusion. I guess we will have to see what they say.
I am going to call later to see how you have been doing. I hope we let you rest and I hope they decide to transfuse you. You are a whole new person when they transfuse you! I will see you in the morning love. I miss you already!!We love you!

Thursday, May 5, 2016

Happy 10 Weeks... - May 5th, 2016

I got there around 7:50 am to start our routine - pump, breastfeed, hold. We did just that. Except this time, you took your whole feed (43 ml) from me this morning. Everyone was so excited and couldn't believe how well you did. I was so happy that you did so well.
The doctors changed a few things for today. You are back on Vitamin D (never even knew you were off of it - no one at CHOP told me), your feeds are being increased to 43 ml (they made a joke after your feed this morning that you knew what it was changing to), and after three feeds of 43 ml, they were increasing it to 46 ml. You are also on high protein now.
Speech was coming for your 11:30 feed to see how you were doing. She tried to get you to latch, but you would latch and not suck. She checked your mouth and she said that you had a lip tie and a tongue tie. This would make it difficult for you to empty me she said. Since you wouldn't really do much, she said that she wanted to come back when you do well at 8:30 am.
We let you rest for the next feeding, and after that you had a cluster of episodes. You got really pale and I told them that they needed to check your hemoglobin because that is what you do when you need blood. They said they didn't think your hemoglobin would change that much from the 27th when you last had it done. I also noticed that your left foot was swollen a bit as well. We elevated the foot, and I convinced them to do a CBC. The results came back and your hemoglobin went from 13.9 to 9.4. They said that they didn't want to do anything yet (except put you back on oxygen), they just wanted to watch you for now. You had another cluster of episodes. When you got even more pale, I went out to find the nurse and told her that you weren't looking good at all. She went to tell the doctors and the NP came to speak with me.
The NP said that she didn't think that you had an infection because your blood work came back good. She said that she thinks what happened is that you worked so hard this morning getting my milk, that you just ran out of all your energy. She said that your color going is part of that too. She said that you needed to rest. If you were continuing to do this, the wanted to do a CBC again on Monday along with a RTIC. Then we would take it from there. I asked her if you could be silently aspirating and she said that you wouldn't show signs this soon if that were the case. She said that you would start to show signs 24-48 hours later.
Daddy came home from work early to see you. Your color was back to normal by the time he came. A little later, you had another cluster of episodes, and daddy got to see your pale face. Your lips start turning blue when you drop your heart rate, which obviously makes us very nervous. The had to use stim a few times to get your heart rate back up.
Just as we were getting ready to leave, you had more episodes. The nurse saw the worry in my eyes (I obviously didn't want to leave) and said that I could leave. She said that if she thought I needed to stay, that she would tell me. She says that you are just getting so mad that you cry and cry and forget to breathe. I asked her how the process is when I call in and she told me. She told me to call as often as I want.
I hope that you have a good night. We love you so much. Keep fighting, Mason. You are almost to the finish line. We just need to learn how to eat. You do great, just need to get some energy! I will see you in the morning - please rest up so we can have a great day tomorrow!
P.S. Two of your nurses from when you were first at Virtua came to visit you today! They said they loved taking care of you and that they missed you. They were so happy to see how much you have grown!!

Wednesday, May 4, 2016

All These Firsts!! - May 4th, 2016

This morning the nurse asked what my schedule was like for the day. I said that I would probably be going in and out since we live so close. Last time you were at Virtua, I went for your care every 6 hours, so 9 am, 3 pm, and 9 pm. Now you have care every 3 hours, and I didn't really take that into consideration.
I ended up staying all day. Here was what my day was like: pump, care, non-nutritive sucking, hold you. Pump, non-nutritive sucking, hold you. Lunch. Pump, breastfeed (!!), hold. Pump, breastfeed (!!), hold. Its crazy how much our schedule has changed since you were at Virtua last! I could come and go much easier then. Now that we are starting to breastfeed, it is a lot harder for me to leave during the day.
Lets talk about breastfeeding! So, when you were at CHOP, you were having some trouble with bottle feeding. They said that they didn't want us to do any bottle feeding until we started working with speech. Now at Virtua, speech said that we should try breastfeeding since you are giving all of the cues that you want to eat. We tried at 11:30, but you were too sleepy. At 2:30, you were awake and you did SO well! No brady's or desats, and no high respiratory rate. It seemed like you knew when you needed to take a break. The nurse didn't weigh you because she didn't think you would do as well as you did. We had to take a guess as to how much you ate and feed the rest through your tube. At 5:30, we decided to try again. This time, I pumped half of the time on the one side, and then when I was finished, I had to wait for the nurse who didn't come in for another 30 minutes or so. You latched and started coughing. You got too much - which I think is because you didn't latch on right away when I was finished pumping. So we tried one more time and said if you were to cough again, we would stop. You did great for at least another 15-20 minutes. Then you coughed again, so we stopped. This time the nurse weighed you before and after. Instead of giving you 40 ml's, she gave you 32 ml's. She said that we will try breastfeeding for three days, and if you do well, we can then introduce bottle feeds. (Please pray that he does well with breastfeeding, and then bottle feeding!)
The only thing I do not like about your stay at Virtua, is the bed that you sleep in. You had a large crib at CHOP that was so big and nice and comfortable. Now, since you have reflux and they have to tilt you up, you slide all the way to the bottom of your bed. That can't be comfy for you!
Well, another day down. One day closer to coming home. You are doing great. I hope this continues! We love you and we will see you tomorrow. Hope you have a great night!!

Tuesday, May 3, 2016

And We're Back! - May 3rd, 2016

This morning speech came to feed you. She listened to your lungs as you were just sucking on your paci and then she put a drop of breast milk on the paci and put it in your mouth, and then finally she gave you the bottle. You started coughing after and she said that she thinks that it is unsafe right now to bottle feed you. She said that boys take longer to learn how to feed. She also spoke about a swallow study, but you are too young to have thickened liquids, so they won't do that for another 8 weeks, if they have to at all. They said it may just be a "preemie thing" and you may grow out of it fast.
When the doctors rounded today they asked if we wanted to go back to Virtua, as there was a bed open. I asked a bunch of questions about your care and what would be taken care of differently if we were to leave. The doctor said there is no medical reason to stay at CHOP, as they will do the same exact thing the Virtua would do if we were to get transferred. I asked the doctors what they would do, and they said that they would go back to Virtua to be closer to home since you were stable. After speaking with daddy, we decided it would be best to go back to Virtua. A few hours later, mommy went in the ambulance with you back to our old "home".
When we came back to Virtua, they did all the necessary admission stuff. After they finished, you settled down a bit and were able to go to sleep. You woke up for your feeding and care. As mommy was changing your diaper, you decided to pee on the wall, and poop all over mommy's hand! First time you pooped on me! I can't wait for daddy to start changing your diapers! Although after seeing you poop on my hand, I'm not quite sure he will want to anytime soon! It is true - if it is your kid, you really don't mind pee or poop on you. Weird!
We stayed for a bit to meet your night nurse. So far I like both of the nurses we have had. We spoke with them about continuity of care and it seems like you will have the same nurses all of the time, unlike CHOP.
Tomorrow will be the first time in a while that I will be able to sleep a little longer than 6:45 am. I can now come and go as I please and daddy will be able to see you more! We are happy that we are back. Hopefully in a few weeks you will be coming home. We just have to practice eating!!
We love you buddy. You had a lot go on today, and you still did great. I will see you tomorrow for your care at 8:30 am! Hope you sleep well in your new home!!

Monday, May 2, 2016

Another Milestone! - May 2nd, 2016

This morning I was holding you when the doctors came around for rounds. They said that they wanted to do a swallow study on you to see if when you bottle feed, any of the milk goes into your lungs. If it does not, we can continue on the bottle feeds. Speech was supposed to come around today to check you out, but with you having your eye exam, they called and asked if tomorrow would be better and I said yes. Nothing else was going to change for the day.
Your eye exam was today and they said that you are still stage 2 zone 2. Nothing changed from last week. They will come again next week to see how you are doing, and if nothing changes next week, they will come in two weeks after that. They took pictures this time to document what your eyes look like so they can compare them to next weeks eye exam. They showed me the pictures and told me that when you get older, I can tell you that I have seen the back of your eyes.
I like how you are in a crib now with less wires connected to you. I feel like I can just get you out of your crib whenever I want now. I don't have to ask anyone to get you out of the isolette anymore. I no longer have to hold you in hour long increments. I hold you a lot more now! I also noticed that they put a onesie on you, so I washed some of your onesies so that I can bring them in tomorrow and you can wear your own clothes.
We did non-nutritive sucking at 9 am today because you couldn't bottle feed today. You were tired, so you latched for a couple sucks and then fell asleep. I wasn't able to try the rest of the day because I needed to eat lunch and because you were so upset with the eye exam. Tomorrow is another day!
Now for the news you have all been waiting for - I called tonight and she told me you were doing great. She said that you now weigh 5 lbs! You are gaining weight so fast!
You amaze me every day. I can't believe how fast you have grown over these last few weeks. All of the milestones you have hit and all of the obstacles you have overcome. It won't be long before you are home and we can finally take care of you on our own! I'd gladly lose sleep if it meant that you could be home!!! We love you so much and I will see you in the morning!

Sunday, May 1, 2016

March for Babies! - May 1st, 2016

Today was the March for Babies walk that we signed up for to support preemie babies like you, Mason! There were SO many people that came out to support you. We are so thankful to have so many people that support us! After the walk, we had people come to our house to thank them for coming to the walk. We look forward to having you come with us next year!
I called last night and this morning at about 5 am to see how you were doing. Yesterday you did so well with the bottle feeds. The night nurse said both times that you were getting overwhelmed with the bottle feeds. I was so confused as to why because you did so well yesterday. Today when I called the day nurse, she said that you did really well for her and took down 11 ml's. She said that on the very last sip you coughed. I guess the doctors came and said that you were burning a lot of calories by trying to bottle feed so much, so they wanted to stop the bottle feeds for the rest of the day. They also said that they usually don't start bottle feeding this young, and that you were exceeding their expectations.
Daddy, mom-mom, pop-pop, and I came later and visited. Daddy held you for a bit and then I did as well. The nurse told us that you were 4 lb., 11 oz. now. You are getting so big so fast! We stayed for about 2 hours and then left to go home since it was such a long day.
Other than that, there really isn't too much that is going on. You will get your eye exam on Tuesday, and some blood work tomorrow. You now have all of your vaccines. Just waiting on a bed so that you can get transferred back to Virtua. It doesn't seem like it will be anytime soon, but maybe we will get to go back sooner than later.
We love you so much and hope you have another great night in your crib. I will see you in the morning. Maybe I will get to bottle feed you once tomorrow!