This morning we came for a bit because mommy wanted to be there for rounds. We noticed that you had no cannula anymore! You are now breathing on your own!!! We came at 9 am and stayed until 10:30 am and the doctors still didn't come around at all so we left to go meet grammy, poppy, great aunt Wanda and Great-Grandma. We had some lunch and then headed up to see you.
When we were there in the morning, I told your nurse to call me after the doctors rounded. I got a phone call just as lunch was over and your nurse said that you were doing great. She said that they were going to start to bottle feed and you would go in a crib today! So exciting!
When we got there with the family, they all took turns coming in to see you. At your 3 pm feed, daddy started out trying to bottle feed you, but the nurse told him that it was easier for you if he held you a certain way and he did not feel comfortable holding you like that. I did, so I fed you the bottle. You did such a good job, only dropping your heart rate twice! You gave us a big burp at the end as well. Since we were still there at your 6 pm feeding, I fed you with the bottle again, and you didn't have any drops in heart rate. You had the whole bottle both times (only 7 ml's) and they said as long as you were doing well with the bottle feedings, they would keep increasing the amount in the bottle. You still got fed through your feeding tube the other 33 ml's.
As we were getting ready to leave, I was upset because they still didn't bring the crib to your room. The nurse said she would go and ask what was going on, and about 5 minutes later, your crib came! I was able to transfer you over to your first crib from your isolette. You seemed like you were so big in your isolette, and now you seem so small in your crib.
After I had changed your diaper after feeding you the first time tonight, you went to the bathroom again. I changed that diaper, and then you went again. So I changed your diaper for a third time, hoping that was it. About 10 minutes later, it needed to be changed again! Gotta get it all out!
I just spoke with the nurse from tonight to see how you were doing and she said that while she was feeding you with the bottle you got a little overwhelmed. She said she put 10 ml's in the bottle since you did so well earlier and you weren't coordinating your sucking, breathing, and swallowing as well so she stopped after 5 ml's. Other than that she said you were doing well!
Such a big day today - we are so happy you are doing so well! You may have some troubles bottle feeding, but that is to be expected. Today is only your first day and you did so well! We hope you have a great night in your crib and you stay nice and warm. Pretty soon you will be home to cuddle with me and daddy! We love you buddy!!!
Saturday, April 30, 2016
Friday, April 29, 2016
Such A Great Day! - April 29th, 2016
I got to the hospital very early this morning, so I decided to go have some breakfast and get some coffee before having to go back to wait for the doctors to round.
When I got back up to the room, the doctors came fairly quickly. She said that she wanted to start bottle feeding (PO) and the nutritionist that was with her said that she wanted to increase your feeds to 40 ml. They didn't want to do both at the same time, so they decided to increase your feeds and worry about the bottle feeds this weekend. You are now getting dressed and bundled in the isolette and on air mode. They keep weaning down the temp to see if you can hold your body temperature. If you get down between 26 and 27 degrees Celsius, and you can still keep your body temperature with a blanket, then you can come out into a crib. The doctor said she wanted to take you off of your breathing support, but the other doctor said that it would be easiest to wean you from 1 to .5 just incase they have to turn it up a little bit. They are starting to gravity feed again instead of giving your feeds over 30 minutes.
After this weekend, it seems like the only thing that we are going to have to work on is eating. They said that they give a bottle before breastfeeding because it is easier to see how much milk you are getting. Hopefully even with the bottle feeds, we will be able to breastfeed. They say that preemies have a harder time eating because it is hard to suck, swallow, and breathe at the same time. Hopefully you don't have any issues!
Today was a very emotional day for me. Having so much good news at once was overwhelming, just thinking about how far we have come. I cried happy tears quite a few times because it seems like it won't be too long before you can come home. It will be a few more weeks, but we also have been in the NICU for 9 weeks. Just thinking about where we started is crazy. Such a crazy journey that I wouldn't wish upon anyone, but we are so happy to have been able to meet you so early and watch how much you have grown.
You are making amazing progress. We love you so much and can't wait to bring you home. Mommy is not going to want to put you down. A lot of parents don't like to change diapers and deal with babies crying, but I can't wait to change each and every diaper, and be able to hold you and comfort you when you cry. Maybe it will be short lived, but I have learned to cherish each and every thing that I can do for you while in the NICU. I hope it continues on when you come home. You are our little hero.
When I got back up to the room, the doctors came fairly quickly. She said that she wanted to start bottle feeding (PO) and the nutritionist that was with her said that she wanted to increase your feeds to 40 ml. They didn't want to do both at the same time, so they decided to increase your feeds and worry about the bottle feeds this weekend. You are now getting dressed and bundled in the isolette and on air mode. They keep weaning down the temp to see if you can hold your body temperature. If you get down between 26 and 27 degrees Celsius, and you can still keep your body temperature with a blanket, then you can come out into a crib. The doctor said she wanted to take you off of your breathing support, but the other doctor said that it would be easiest to wean you from 1 to .5 just incase they have to turn it up a little bit. They are starting to gravity feed again instead of giving your feeds over 30 minutes.
After this weekend, it seems like the only thing that we are going to have to work on is eating. They said that they give a bottle before breastfeeding because it is easier to see how much milk you are getting. Hopefully even with the bottle feeds, we will be able to breastfeed. They say that preemies have a harder time eating because it is hard to suck, swallow, and breathe at the same time. Hopefully you don't have any issues!
Today was a very emotional day for me. Having so much good news at once was overwhelming, just thinking about how far we have come. I cried happy tears quite a few times because it seems like it won't be too long before you can come home. It will be a few more weeks, but we also have been in the NICU for 9 weeks. Just thinking about where we started is crazy. Such a crazy journey that I wouldn't wish upon anyone, but we are so happy to have been able to meet you so early and watch how much you have grown.
You are making amazing progress. We love you so much and can't wait to bring you home. Mommy is not going to want to put you down. A lot of parents don't like to change diapers and deal with babies crying, but I can't wait to change each and every diaper, and be able to hold you and comfort you when you cry. Maybe it will be short lived, but I have learned to cherish each and every thing that I can do for you while in the NICU. I hope it continues on when you come home. You are our little hero.
Thursday, April 28, 2016
Happy 9 Weeks! - April 28th, 2016
This morning when the doctors rounded, they weaned you on the cannula to 1. You are almost off of breathing support. It is scary but exciting at the same time! They said you now have to focus on growing and eating. Daddy called while the doctors were there to clarify a few things. They gave you the lovenox for as long as they wanted to and since it isn't doing anything, they don't want to risk any bleeding. They said that it would resolve on its own.
I spoke with the neurosurgeon today and I asked him if he felt comfortable with you leaving and going to virtua. He said that you looked great and that he thought it was a good idea. He clarified for me that you would see him 1 month after discharge - not 1 month after the surgery.
As for nursing, we tried again today and you did even better than yesterday. You stayed on longer today and were more awake. I adjusted my pumping schedule so that I would empty before your feedings so we could practice more than once a day. Hopefully once you are able to really eat, you will be a pro!
Uncle Ryan was able to come see you today for a while. Pretty soon you will be able to meet all of your cousins!
When I called tonight she said that you were sleeping and that she did your care at 9. She said that you now weigh 4 lb., 8 oz. I think you only need one more day of weight gain and then we can start you on air mode in your isolette. One step closer to coming out of your isolette and into a crib!
These posts keep getting shorter and shorter because you are doing so well. There isn't too much to talk about anymore! Just waiting on our transfer to Virtua - hopefully within the next week!
We love you and are so happy with your progress. Keep it up! See you in the morning!!
I spoke with the neurosurgeon today and I asked him if he felt comfortable with you leaving and going to virtua. He said that you looked great and that he thought it was a good idea. He clarified for me that you would see him 1 month after discharge - not 1 month after the surgery.
As for nursing, we tried again today and you did even better than yesterday. You stayed on longer today and were more awake. I adjusted my pumping schedule so that I would empty before your feedings so we could practice more than once a day. Hopefully once you are able to really eat, you will be a pro!
Uncle Ryan was able to come see you today for a while. Pretty soon you will be able to meet all of your cousins!
When I called tonight she said that you were sleeping and that she did your care at 9. She said that you now weigh 4 lb., 8 oz. I think you only need one more day of weight gain and then we can start you on air mode in your isolette. One step closer to coming out of your isolette and into a crib!
These posts keep getting shorter and shorter because you are doing so well. There isn't too much to talk about anymore! Just waiting on our transfer to Virtua - hopefully within the next week!
We love you and are so happy with your progress. Keep it up! See you in the morning!!
Wednesday, April 27, 2016
Another First! - April 27th, 2016
This morning the doctor weaned you down to 2 on the high flow. You did very well throughout the day on it. No issues at all! They stopped the lovenox again because they said they were close to the amount of days they wanted to treat you for and you are going back to Virtua and there is too much of a risk if you were to continue it there. Apparently the Anti-10a levels that are checked at CHOP come back in 3 hours and at Virtua they come back in 3 days. If anything was wrong with the dose, we wouldn't know for three days which is too risky. They upped your feeds to 37 ml every 3 hours. I asked about when I could start nursing because they told me 35-36 weeks for boys and this week is 35 weeks. She said I could start today as long as I emptied before trying. They call it non-nutritive sucking. It is hard for a preemie to suck, breathe, and swallow, so we have to take it one step at a time.
When you go over to Virtua, you will have an ophthalmologist appointment there next week (if you are there by next week), and you will also be looked at by the doctors there for your shunt. They will then contact the neurosurgeon at CHOP to make sure it is how he wants it. They are starting your vaccines as well since you are 2 months old. I asked them if they did vaccines on a corrected age or actual, and they said your actual age.
After lunch the nurse got a phone call that you were being transferred to Virtua...TODAY. I was shocked, the nurse was shocked, the FLC (frontline clinician) was shocked... the doctor had called over there but apparently there are no beds as of today. When there is a bed available, we will be getting transferred.
When your feeding was starting, we tried nursing. The LC came and helped and made sure to tell me that you may not latch, may just lick, or you may latch. It took a little bit but you did latch! I wasn't expecting that at all! Now we just have to keep practicing and you'll be eating in no time! Right now you are just getting my milk through your tube, and I have to empty before we "nurse." Once we get the sucking part down, then we can try to get a little milk. So as of right now, when you are getting your feeds, we practice. Daddy said "so you're tricking him!?" That made me laugh!
I just got off the phone with the nurse for tonight and you gained some weight! You are up to 4 lb., 7 oz! That is grammy's birthday gift from you.. she loves when you gain weight! Other than that she said that you are doing great!
We love you and can't wait until you are closer to home! Keep it up, you are doing amazing!
When you go over to Virtua, you will have an ophthalmologist appointment there next week (if you are there by next week), and you will also be looked at by the doctors there for your shunt. They will then contact the neurosurgeon at CHOP to make sure it is how he wants it. They are starting your vaccines as well since you are 2 months old. I asked them if they did vaccines on a corrected age or actual, and they said your actual age.
After lunch the nurse got a phone call that you were being transferred to Virtua...TODAY. I was shocked, the nurse was shocked, the FLC (frontline clinician) was shocked... the doctor had called over there but apparently there are no beds as of today. When there is a bed available, we will be getting transferred.
When your feeding was starting, we tried nursing. The LC came and helped and made sure to tell me that you may not latch, may just lick, or you may latch. It took a little bit but you did latch! I wasn't expecting that at all! Now we just have to keep practicing and you'll be eating in no time! Right now you are just getting my milk through your tube, and I have to empty before we "nurse." Once we get the sucking part down, then we can try to get a little milk. So as of right now, when you are getting your feeds, we practice. Daddy said "so you're tricking him!?" That made me laugh!
I just got off the phone with the nurse for tonight and you gained some weight! You are up to 4 lb., 7 oz! That is grammy's birthday gift from you.. she loves when you gain weight! Other than that she said that you are doing great!
We love you and can't wait until you are closer to home! Keep it up, you are doing amazing!
Tuesday, April 26, 2016
Possible transfer - April 26th, 2016
No episodes last night or today. Definitely back to where we were (minus gaining weight 5 consecutive days) before surgery. Keep on going buddy!
This morning during rounds they were talking about getting a consult with urology. They said that they were going to wean your high flow down to 2.5 from 3 tomorrow. They are probably going to increase your feeds tomorrow as well. Other than that, they said that you look really good!
You had your eye exam today so the nurse had to put a series of drops into your eyes. You hated every second of it! The ophthalmologist came and he looked at your eyes and said that you had stage 2 zone 2. Two weeks ago it was stage 1 zone 2. He said that most cases resolve on their own for stages 1 and 2. He said that he would check you again next week.
Urology came to check out your hypospadias. They said that you were too little to do anything now, but they were going to fix your hydrocele, hypospadias, and do your circumcision when you are 6 months corrected. They asked if we wanted to have it done there, and we said yes.
Hematology came around just to make sure that I knew you were on the lovenox and to see if I had any questions. I said that the doctor told me you would be on it for 4-6 weeks and they said that they are aiming more for 4 weeks, not 6. That is a good thing because I am not sure if you were to come home before 6 weeks that I would be able to give you the shot!
I just got off the phone with the nurse for tonight and she said that you now weigh 4 lb. 5 oz. She said that last night you weighed 4 lb. 7 oz. but when I spoke with the nurse last night she said she weighed you again after that and your weight was the same as the previous night so I am not sure why she recorded the higher weight. Anyway, she said that you have been pretty quiet and she did your care and you are now back to sleep.
There is a possibility that once neuro clears you and all your doctors are in agreement that you are good, that you will go back to Virtua. I asked about the timeframe and the doctor said that it could be in two days. I really don't think it will be that soon. She said she needed to call my insurance to make sure that the transfer back to Virtua was covered, and that Virtua would give you the lovenox. She never came back to tell me what she found out, but I will find out tomorrow.
We love you and are so happy you are doing so well. We can't wait until you are home! Until then, keep gaining that weight!!
This morning during rounds they were talking about getting a consult with urology. They said that they were going to wean your high flow down to 2.5 from 3 tomorrow. They are probably going to increase your feeds tomorrow as well. Other than that, they said that you look really good!
You had your eye exam today so the nurse had to put a series of drops into your eyes. You hated every second of it! The ophthalmologist came and he looked at your eyes and said that you had stage 2 zone 2. Two weeks ago it was stage 1 zone 2. He said that most cases resolve on their own for stages 1 and 2. He said that he would check you again next week.
Urology came to check out your hypospadias. They said that you were too little to do anything now, but they were going to fix your hydrocele, hypospadias, and do your circumcision when you are 6 months corrected. They asked if we wanted to have it done there, and we said yes.
Hematology came around just to make sure that I knew you were on the lovenox and to see if I had any questions. I said that the doctor told me you would be on it for 4-6 weeks and they said that they are aiming more for 4 weeks, not 6. That is a good thing because I am not sure if you were to come home before 6 weeks that I would be able to give you the shot!
I just got off the phone with the nurse for tonight and she said that you now weigh 4 lb. 5 oz. She said that last night you weighed 4 lb. 7 oz. but when I spoke with the nurse last night she said she weighed you again after that and your weight was the same as the previous night so I am not sure why she recorded the higher weight. Anyway, she said that you have been pretty quiet and she did your care and you are now back to sleep.
There is a possibility that once neuro clears you and all your doctors are in agreement that you are good, that you will go back to Virtua. I asked about the timeframe and the doctor said that it could be in two days. I really don't think it will be that soon. She said she needed to call my insurance to make sure that the transfer back to Virtua was covered, and that Virtua would give you the lovenox. She never came back to tell me what she found out, but I will find out tomorrow.
We love you and are so happy you are doing so well. We can't wait until you are home! Until then, keep gaining that weight!!
Monday, April 25, 2016
Nice Surprise for Mommy Today! - April 25th, 2016
You did not have any events over night and did very well for the nurse. You had your ultrasound this morning at about 5 am and luckily, nothing has changed. I don't know what I would have done if something changed and it was because of the mistake that was made.
The PA came around before rounds to let me know that the ultrasound showed no changes. She said that they would be back around for rounds. I waited, and waited until I couldn't wait any longer to eat lunch so the nurse told me that she would call me if they came around. She didn't call, and so I ate my lunch and came back when I was finished. They rounded about 15 minutes later. They changed your feeds to 24 calories instead of 22 calories (you were on 24 calories before surgery, so they just slowly reintroduced everything). They weaned your rate down to 3 on high flow. Not much longer and you will be breathing on your own! The PA said that she was going to speak with hematology to see if they wanted to start you on lovenox again. Later, the PA came back and said that they wanted you on the lovenox for 4-6 weeks. They are going to start this tonight at 11 pm. This means if you come home before that, mommy and daddy will have to give you the shot....yikes!
After I ate and after your care, I wanted to do kangaroo with you since we haven't had a chance to kangaroo in a while. I held you for about 2 hours. Towards the end I felt something really hot and then wet... you peed on me! Your diaper had a little space and you happened to pee right out of it all over my belly and shorts, but I am sure that will not be the last time. It is so weird how when it is your child you don't even care. I just had the nurse put a pad between us and I kept holding you.
I asked the nurse when we could start dressing you again and she said when you get back to the weight before surgery, or if you gain weight over 5 days (whichever comes first) then we can start dressing you and weaning the air temp in your isolette. Then we can get you into a crib. (You weighed 4 lb, 6 oz before surgery and you weigh 4 lb, 4 oz today.)
You are going to have your eye exam tomorrow - you hate the eye exams. Hopefully nothing changed from the last exam two weeks ago. Other than that, I don't think there is anything else going on tomorrow which is good because the eye exam is enough for you.
We love you and we hope you have a great night tonight. Mommy will see you in the morning. Keep fighting buddy! You are doing great!
The PA came around before rounds to let me know that the ultrasound showed no changes. She said that they would be back around for rounds. I waited, and waited until I couldn't wait any longer to eat lunch so the nurse told me that she would call me if they came around. She didn't call, and so I ate my lunch and came back when I was finished. They rounded about 15 minutes later. They changed your feeds to 24 calories instead of 22 calories (you were on 24 calories before surgery, so they just slowly reintroduced everything). They weaned your rate down to 3 on high flow. Not much longer and you will be breathing on your own! The PA said that she was going to speak with hematology to see if they wanted to start you on lovenox again. Later, the PA came back and said that they wanted you on the lovenox for 4-6 weeks. They are going to start this tonight at 11 pm. This means if you come home before that, mommy and daddy will have to give you the shot....yikes!
After I ate and after your care, I wanted to do kangaroo with you since we haven't had a chance to kangaroo in a while. I held you for about 2 hours. Towards the end I felt something really hot and then wet... you peed on me! Your diaper had a little space and you happened to pee right out of it all over my belly and shorts, but I am sure that will not be the last time. It is so weird how when it is your child you don't even care. I just had the nurse put a pad between us and I kept holding you.
I asked the nurse when we could start dressing you again and she said when you get back to the weight before surgery, or if you gain weight over 5 days (whichever comes first) then we can start dressing you and weaning the air temp in your isolette. Then we can get you into a crib. (You weighed 4 lb, 6 oz before surgery and you weigh 4 lb, 4 oz today.)
You are going to have your eye exam tomorrow - you hate the eye exams. Hopefully nothing changed from the last exam two weeks ago. Other than that, I don't think there is anything else going on tomorrow which is good because the eye exam is enough for you.
We love you and we hope you have a great night tonight. Mommy will see you in the morning. Keep fighting buddy! You are doing great!
Sunday, April 24, 2016
Back to Normal - April 24th, 2016
We came to visit for a little bit this morning and you looked SO good! No more swelling, and just all around good. You look like you are back to where you were before the surgery! We sat there for a bit and I watched you and all of a sudden, your thumb went into your mouth and you started sucking! Daddy and I immediately grabbed our phones and started taking pictures and videos of you.
We left and came back later with mom-mom and pop-pop. Daddy held you for a while and you were staring at him and loving every second of being with him. Daddy loved it as well. After mommy was finished getting you some milk, I held you. I can't wait until you come home and I can hold you all the time when you aren't connected to any wires!
The PA stopped by to see if we had any questions or anything. You will have your ultrasound of your leg tomorrow and sometime this week you will have your eye exam again. The nurse said to the PA that they will be able to wean you quickly off of the oxygen. The PA said we will take it a day at a time. The nurse was right - you hate those prongs in your nose and half the time I look at you, they aren't even in your nose! But I also agree with the PA - lets take our time so we don't take anymore steps backward.
I just got off the phone with the nurse for tonight. She said she didn't do your care yet, but you have been very quiet. You are still on your full feeds at 35 ml every 3 hours. You are on the cannula like you were before surgery. The only thing we need now is 5 consecutive days of weight gain so we can put clothes on you again and wean down the temp in your isolette. Then we can get you out of there and into a crib!
We love you and I can't wait to see you in the morning! I will be there bright and early in the morning. Stay strong - you are doing great!
We left and came back later with mom-mom and pop-pop. Daddy held you for a while and you were staring at him and loving every second of being with him. Daddy loved it as well. After mommy was finished getting you some milk, I held you. I can't wait until you come home and I can hold you all the time when you aren't connected to any wires!
The PA stopped by to see if we had any questions or anything. You will have your ultrasound of your leg tomorrow and sometime this week you will have your eye exam again. The nurse said to the PA that they will be able to wean you quickly off of the oxygen. The PA said we will take it a day at a time. The nurse was right - you hate those prongs in your nose and half the time I look at you, they aren't even in your nose! But I also agree with the PA - lets take our time so we don't take anymore steps backward.
I just got off the phone with the nurse for tonight. She said she didn't do your care yet, but you have been very quiet. You are still on your full feeds at 35 ml every 3 hours. You are on the cannula like you were before surgery. The only thing we need now is 5 consecutive days of weight gain so we can put clothes on you again and wean down the temp in your isolette. Then we can get you out of there and into a crib!
We love you and I can't wait to see you in the morning! I will be there bright and early in the morning. Stay strong - you are doing great!
Subscribe to:
Posts (Atom)