This morning we were rushing around to go to your neurosurgery appointment. Since we were going to be late, I was rushing around and I walked really fast around the corner and hit my toe on your daydreamer bed. I knew immediately that I broke my toe. Daddy didn't think I could break it on such a small piece of plastic, but when I started getting light headed and when I took off my sock and my toe was crooked, I knew it was broke. I couldn't miss your appointment, so I put ice on it and got in the car really quick before I passed out (I didn't pass out - but I felt really light headed and wanted to be in the car just incase). Great start to the morning!
I was in so much pain that daddy asked if I wanted him to drop me off at urgent care and he would take you to your appointment, but I said that I would just wait and go to urgent care after. We made it to your appointment, and we didn't even get called in until 11:00 (your appointment was at 10:00). We weren't going to see your neurosurgeon again, but I asked to see him and he came in. He said that you were doing great and that he takes all the credit for you "turning out to be a normal boy." He said that usually preemies have some issues when they are born that young, but you looked like you were doing just fine. He said that he wants to see you back in three months. He said he wants to follow you closely in your first year. You haven't needed any revisions yet, and hopefully you won't need any anytime soon. The neurosurgeon said that sometimes after a shunt is put in, the fluid finds somewhere to drain and you may not need the shunt to work.
He felt the top of your head where the reservoir is and said that if it is still that prominent when we come back in three months, you will need surgery to take it out. Usually when your skull closes, the reservoir is hidden, but that didn't happen with you. Since it is still that way, I am assuming that we will need another surgery to take out the reservoir. That will be your 4th surgery before you are 1 (assuming that you will have it done before you are 1). You are the strongest little boy I know.
When we got home, I went to urgent care and they did an x-ray. It was confirmed - my fourth toe was broken. They said to buddy tape it to the other toe and to wear a boot for 4 weeks. They said if it still hurt after 3 weeks to make an appointment with an orthopedic. I iced my foot the rest of the night and sat on the couch as much as I could. With a baby, it's kind of hard to stay off my feet when I have to change you and play with you!
PT and OT are still impressed with all that you are accomplishing. You are doing so well for everything that you have been through. We are amazed everyday. We love you so much and love seeing you grow (even though it is sad at the same time - time goes by so fast). Keep doing what you are doing!!
Thursday, November 24, 2016
Monday, November 7, 2016
Audiologist Appointment - October 11th, 2016
Today we had our appointment with the audiologist. I was very nervous, especially since while we were in the NICU, a little boy in our quad had hearing loss. I read somewhere that it is common to have hearing loss in preemies (not sure how true it is). Anyway, I knew you could hear, but didn't know if there was any hearing loss.
The audiologist was very nice. He told us exactly what he was doing at all times and what he expected. In our case, he said that they usually didn't test babies until they were around 7 months, and you were only 4 months adjusted. He said that he was going to do a test like they did in the NICU, and then he said if you were cooperative, he would do another test that they usually didn't do until at least 1 year of age.
For the first test, everything went well. He said that there was one high pitched noise that didn't register in your right ear, but he said he wasn't worried about that. He said that could be because of a variety of things. He said that since you were doing so well, he wanted to take us into another room to try the second test. He told us not to be worried if things didn't go well for this test, since you normally wouldn't be having this test at this age.
For the second test, he said that we would go into a room that had puppets that lit up and danced, and he would go into another room and he would talk to us through speakers. You sat on daddy's lap, and the audiologist played certain sounds and lit up the puppets in the direction of the sounds to see if you would look. You didn't turn for the majority of them. He said that was to be expected. He said you were still too young to do that, and assured us that you were just fine. He said that if we were still worried at 7 months corrected to make an appointment.
I am so glad that everything turned out okay. I remember when I was worried a few weeks ago, I would let you fall asleep and then shake a rattle to see if you could hear. Sure enough, you would startle! That probably wasn't so nice, but I needed reassurance that you could hear since you wouldn't turn towards noises! The PT said that you were just bored with sounds and the audiologist agreed. He said that its like us - if a door keeps opening and closing, we don't continue to look every time the door opens and closes. We get used to a sound and stop responding to it. I guess that makes sense!
We love you so much and are so happy that you will be able to hear just fine. Hopefully in the coming weeks you will start to turn towards noises. I am sure everything will be fine! Tomorrow we have your neurosurgeon appointment. I am excited to see your neurosurgeon!
The audiologist was very nice. He told us exactly what he was doing at all times and what he expected. In our case, he said that they usually didn't test babies until they were around 7 months, and you were only 4 months adjusted. He said that he was going to do a test like they did in the NICU, and then he said if you were cooperative, he would do another test that they usually didn't do until at least 1 year of age.
For the first test, everything went well. He said that there was one high pitched noise that didn't register in your right ear, but he said he wasn't worried about that. He said that could be because of a variety of things. He said that since you were doing so well, he wanted to take us into another room to try the second test. He told us not to be worried if things didn't go well for this test, since you normally wouldn't be having this test at this age.
For the second test, he said that we would go into a room that had puppets that lit up and danced, and he would go into another room and he would talk to us through speakers. You sat on daddy's lap, and the audiologist played certain sounds and lit up the puppets in the direction of the sounds to see if you would look. You didn't turn for the majority of them. He said that was to be expected. He said you were still too young to do that, and assured us that you were just fine. He said that if we were still worried at 7 months corrected to make an appointment.
I am so glad that everything turned out okay. I remember when I was worried a few weeks ago, I would let you fall asleep and then shake a rattle to see if you could hear. Sure enough, you would startle! That probably wasn't so nice, but I needed reassurance that you could hear since you wouldn't turn towards noises! The PT said that you were just bored with sounds and the audiologist agreed. He said that its like us - if a door keeps opening and closing, we don't continue to look every time the door opens and closes. We get used to a sound and stop responding to it. I guess that makes sense!
We love you so much and are so happy that you will be able to hear just fine. Hopefully in the coming weeks you will start to turn towards noises. I am sure everything will be fine! Tomorrow we have your neurosurgeon appointment. I am excited to see your neurosurgeon!
Sunday, November 6, 2016
Pediatrician Appointment - October 5th, 2016
Today we had an appointment with the pediatrician for a weight check. We also had a couple questions about your hearing. Our PT told us to ask about it, and OT agreed. Other than that, you were doing fine.
We got to the pediatrician and got into the room. The nurse did a weight check and you were 13 pounds! She said that if we wanted, we could also get the flu shot today. Since our neonatologist said that she recommended it, we got it. You didn't even cry at all! We waited for the pediatrician to come in, which took longer than usual. Since it was taking so long, I decided not to waste time, and that we could practice tummy time on the table. I had my camera out, and caught you rolling over from belly to back for the second time! I was so excited for you!
The doctor came in and took a look at you and said that you looked great. I asked him about your hearing (you won't look towards sounds) and he said that usually that happens when you are a little older, but because we were concerned, he referred us to an audiologist. Another specialist.
Our next appointment is with the neurosurgeon on the 12th. Hopefully we get to see him this time! Other than that, you are doing so good and PT and OT always say how good you are doing.
We love you and are so happy with your progress. We enjoy watching you grow and learn new things every day.
We got to the pediatrician and got into the room. The nurse did a weight check and you were 13 pounds! She said that if we wanted, we could also get the flu shot today. Since our neonatologist said that she recommended it, we got it. You didn't even cry at all! We waited for the pediatrician to come in, which took longer than usual. Since it was taking so long, I decided not to waste time, and that we could practice tummy time on the table. I had my camera out, and caught you rolling over from belly to back for the second time! I was so excited for you!
The doctor came in and took a look at you and said that you looked great. I asked him about your hearing (you won't look towards sounds) and he said that usually that happens when you are a little older, but because we were concerned, he referred us to an audiologist. Another specialist.
Our next appointment is with the neurosurgeon on the 12th. Hopefully we get to see him this time! Other than that, you are doing so good and PT and OT always say how good you are doing.
We love you and are so happy with your progress. We enjoy watching you grow and learn new things every day.
Wednesday, October 12, 2016
Nutrition - September 30th, 2016
Today we called the nutritionist to talk to him about the next steps that we could take to help you with your feedings. The last appointment we had was with GI telling us that you may be a volume limited child. We were excited to talk to him and finally be able to decrease the volume so that you may take more by bottle.
I called and was so surprised to find out that the number was a direct line to the nutritionist. He answered and I told him who I was and that we saw GI and told him that they suggested we decrease the volume and increase the calories. He looked up your information and then told us that he wanted to increase your calories from 22 calories to 24 calories. He told us that we now needed to mix 1 tsp of formula to 90 ml of breast milk. He said to keep feeding you every 3 hours, with the exception of midnight. I was happy about the changes, and so was daddy when I told him what we were doing.
After I got off the phone, I got to thinking. I never asked how much you should be getting every 3 hours, and just assumed it was 90 ml. It didn't seem right to me after calculating the calories. I called back just to make sure I knew what we were doing. It was a good thing that I called back. He wanted you to still take 110 ml every 3 hours, but now 24 calories. So, after what GI said, he said that he wasn't going to do that, and he thought you still needed more calories. He said to stay where we were for 5 more days, then start the 110 ml with 24 calories for two weeks. After that, we could call him and see what to do from there. Daddy was not happy with this information, so he got on the phone to talk with the nutritionist. The nutritionist explained that he wasn't backing down on the volume because he would have to increase your calories to over 30 in order to have you get the intake you needed if we decreased the volume. After talking for a bit, we agreed to do 2 weeks of 24 calories, and then we would do 2 weeks of 27 calories. After that, if you are still doing well, we may be able to go down to 6 feeds a day instead of 7 feeds a day. Hopefully then you would be hungrier by the time we had to bottle feed you, and then maybe you would take more by mouth. I guess we will have to see how you do.
We decided that we weren't going to wait another 5 days doing what we have been doing, rather, we would start the new calorie mixture today. Hopefully things go well, and we can get closer to getting this tube out!
We love you so much and love seeing how well you are doing. We still need you to eat more by mouth, but you are doing so well with everything else. We are praying that your eating will go well and we can find something that works for you soon.
I called and was so surprised to find out that the number was a direct line to the nutritionist. He answered and I told him who I was and that we saw GI and told him that they suggested we decrease the volume and increase the calories. He looked up your information and then told us that he wanted to increase your calories from 22 calories to 24 calories. He told us that we now needed to mix 1 tsp of formula to 90 ml of breast milk. He said to keep feeding you every 3 hours, with the exception of midnight. I was happy about the changes, and so was daddy when I told him what we were doing.
After I got off the phone, I got to thinking. I never asked how much you should be getting every 3 hours, and just assumed it was 90 ml. It didn't seem right to me after calculating the calories. I called back just to make sure I knew what we were doing. It was a good thing that I called back. He wanted you to still take 110 ml every 3 hours, but now 24 calories. So, after what GI said, he said that he wasn't going to do that, and he thought you still needed more calories. He said to stay where we were for 5 more days, then start the 110 ml with 24 calories for two weeks. After that, we could call him and see what to do from there. Daddy was not happy with this information, so he got on the phone to talk with the nutritionist. The nutritionist explained that he wasn't backing down on the volume because he would have to increase your calories to over 30 in order to have you get the intake you needed if we decreased the volume. After talking for a bit, we agreed to do 2 weeks of 24 calories, and then we would do 2 weeks of 27 calories. After that, if you are still doing well, we may be able to go down to 6 feeds a day instead of 7 feeds a day. Hopefully then you would be hungrier by the time we had to bottle feed you, and then maybe you would take more by mouth. I guess we will have to see how you do.
We decided that we weren't going to wait another 5 days doing what we have been doing, rather, we would start the new calorie mixture today. Hopefully things go well, and we can get closer to getting this tube out!
We love you so much and love seeing how well you are doing. We still need you to eat more by mouth, but you are doing so well with everything else. We are praying that your eating will go well and we can find something that works for you soon.
NICU Reunion - September 24th, 2016
Today we went to your first NICU reunion! We knew that there would be rides, face painting, and games and that you weren't big enough for them, but we wanted to see some of the nurses that we haven't seen in a while. We didn't know who would be there, but we hoped that we would see a lot of the nurses that we spent so much time with.
We got there and walked around for a little bit. We didn't really see any of the nurses we knew. We then got some pictures taken, and then we were going to leave if we didn't see any of the nurses. Finally, we saw one of the nurses that we loved, and spoke with her for a while. After that, we walked around a little more, but didn't see anyone else that we knew. Since you weren't big enough for anything yet, we decided to leave.
I do have to admit that when we started walking towards the hospital, I started crying. It brought back so many memories. Daddy looked at me like I was crazy, but I am sure deep down he understood. It was definitely hard going back there, but it was nice seeing one of your nurses!
Tomorrow, you are 7 months. I have no idea where the time has went. All I know is that I am so blessed that I have been able to be home with you for the last few months. I really think that working with you every day has helped you in so many ways. We love you so much, and although we are sad at how fast time is going, we are so happy to see how well you are growing!
We got there and walked around for a little bit. We didn't really see any of the nurses we knew. We then got some pictures taken, and then we were going to leave if we didn't see any of the nurses. Finally, we saw one of the nurses that we loved, and spoke with her for a while. After that, we walked around a little more, but didn't see anyone else that we knew. Since you weren't big enough for anything yet, we decided to leave.
I do have to admit that when we started walking towards the hospital, I started crying. It brought back so many memories. Daddy looked at me like I was crazy, but I am sure deep down he understood. It was definitely hard going back there, but it was nice seeing one of your nurses!
Tomorrow, you are 7 months. I have no idea where the time has went. All I know is that I am so blessed that I have been able to be home with you for the last few months. I really think that working with you every day has helped you in so many ways. We love you so much, and although we are sad at how fast time is going, we are so happy to see how well you are growing!
Sunday, October 2, 2016
GI Appointment - September 21st, 2016
Today we had our GI appointment. When the doctor came in, she said that you looked really good. We love hearing that. She asked us a bunch of questions and then we told her what we thought and she told us what she thought. Basically, she said that she didn't think it was necessary right now to do any testing or anything because you only throw up once or twice a day. She said that if it was something wrong with your anatomy, then you would be throwing up more than that. She said that she didn't see why we couldn't try lowering your volume and increasing the calories for a couple weeks to see if that would keep you from throwing up. She said that you may be a volume limited kid. She said that she would notify nutrition and let them know what she thought. We made a follow up appointment for November, and she said that if we didn't need it that we could cancel.
I was happy about that because that is what we thought the whole time. We have to wait for the nutritionist to get back from vacation before we go ahead and figure out what to do next. Maybe we are finally getting somewhere!
We also had PT today. She is really impressed with what you are doing. She said that you are doing very well, and you keep improving each week. We have to change our time for next week because she is going to attend a field trip with her son, but at least she still gets to see you.
Tomorrow I am shipping out some of my milk to donate to a milk bank that uses it for human fortifier for preemies. I am so happy that I am able to donate so that other preemies like you can get the nutrition they need to grow big and strong. I will donate as much as I can, and I will make sure that you still have enough to get you to your first birthday, and possibly one year adjusted.
This weekend is the Virtua NICU reunion. I am really excited to go. I hope that we an see a lot of the nurses that took care of you. I can't wait to attend the reunion when you get bigger so you can participate in the activities that they will have!
We don't really have too much more going on until your weight check on October 5th. We also get to see your Neurosurgeon in October as well. Hopefully this time when we go we actually get to see him, and not someone else. I may call just to see if we can make sure to see him.
We are enjoying spending tons of time with you. We love seeing you learn new things and meet new milestones. You are such a good baby - you are always happy, you sleep through the night (with the exception of us having to wake you up to eat), and you just make us so happy. We love you more and more each day. We can't believe that you are almost 7 months old! Time goes by so fast and I am blessed to be able to spend these months at home with you. We love you, handsome!
I was happy about that because that is what we thought the whole time. We have to wait for the nutritionist to get back from vacation before we go ahead and figure out what to do next. Maybe we are finally getting somewhere!
We also had PT today. She is really impressed with what you are doing. She said that you are doing very well, and you keep improving each week. We have to change our time for next week because she is going to attend a field trip with her son, but at least she still gets to see you.
Tomorrow I am shipping out some of my milk to donate to a milk bank that uses it for human fortifier for preemies. I am so happy that I am able to donate so that other preemies like you can get the nutrition they need to grow big and strong. I will donate as much as I can, and I will make sure that you still have enough to get you to your first birthday, and possibly one year adjusted.
This weekend is the Virtua NICU reunion. I am really excited to go. I hope that we an see a lot of the nurses that took care of you. I can't wait to attend the reunion when you get bigger so you can participate in the activities that they will have!
We don't really have too much more going on until your weight check on October 5th. We also get to see your Neurosurgeon in October as well. Hopefully this time when we go we actually get to see him, and not someone else. I may call just to see if we can make sure to see him.
We are enjoying spending tons of time with you. We love seeing you learn new things and meet new milestones. You are such a good baby - you are always happy, you sleep through the night (with the exception of us having to wake you up to eat), and you just make us so happy. We love you more and more each day. We can't believe that you are almost 7 months old! Time goes by so fast and I am blessed to be able to spend these months at home with you. We love you, handsome!
Tuesday, September 20, 2016
Neonatal Nurses Day - September 15th, 2016
For Neonatal Nurses Day, you decided that you would roll over from belly to back! You were looking at yourself in your mirror, laughing, and then you rolled right over! I was too busy taking pictures of you smiling, that I missed out on getting a video of you rolling over! At least I was able to see it in person. I dread going back to work and missing out on some of your milestones.
Since going to the feeding team appointment, there are times where you will take more than 30 ml. Not too many times, but we think that you are way more comfortable on your back than you were on your side. Six am seems to be the time where you would rather play than eat. You rarely take a bottle at all during that time. You go back to sleep and wake up around 8:30 most days.
We are still throwing up feeds once or twice a day, but we did schedule your GI appointment for September 21st. Hopefully they can tell us what is going on. The doctors at the feeding team appointment seem to think that your reflux is better, so who knows. Maybe the problem is that your belly is too small for all the food that they want you to eat!
Other than that, you have been doing great with your therapies. They are always impressed with what you are able to do each week. You are starting to reach for your toes, you are laughing when we talk to you (no tickling needed), you study people's faces, you are beginning to recognize mommy and daddy apart from other people, and you love putting all your weight on your legs! We just love watching all the things that you are able to do. Months ago when we were in the NICU, we weren't sure how everything would work out and what you would and wouldn't be able to do. So far, you are doing so well and exceeding our expectations. Of course there is still a lot that we will have to go through, but we are s proud of how far you have come.
We love you so much and can't wait to see what the GI has to say about everything. Maybe we will be able to stop the vomiting and eventually get you to eat 6 times a day and get that tube out! Keep on growing and hitting those milestones!!
Since going to the feeding team appointment, there are times where you will take more than 30 ml. Not too many times, but we think that you are way more comfortable on your back than you were on your side. Six am seems to be the time where you would rather play than eat. You rarely take a bottle at all during that time. You go back to sleep and wake up around 8:30 most days.
We are still throwing up feeds once or twice a day, but we did schedule your GI appointment for September 21st. Hopefully they can tell us what is going on. The doctors at the feeding team appointment seem to think that your reflux is better, so who knows. Maybe the problem is that your belly is too small for all the food that they want you to eat!
Other than that, you have been doing great with your therapies. They are always impressed with what you are able to do each week. You are starting to reach for your toes, you are laughing when we talk to you (no tickling needed), you study people's faces, you are beginning to recognize mommy and daddy apart from other people, and you love putting all your weight on your legs! We just love watching all the things that you are able to do. Months ago when we were in the NICU, we weren't sure how everything would work out and what you would and wouldn't be able to do. So far, you are doing so well and exceeding our expectations. Of course there is still a lot that we will have to go through, but we are s proud of how far you have come.
We love you so much and can't wait to see what the GI has to say about everything. Maybe we will be able to stop the vomiting and eventually get you to eat 6 times a day and get that tube out! Keep on growing and hitting those milestones!!
Subscribe to:
Posts (Atom)