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!!

Tuesday, September 13, 2016

Feeding Team Appointment - September 13th, 2016

Yesterday, I was so nervous about your feeding team appointment. You haven't been taking much by bottle, and I figured they were going to say that you needed a gtube. I did not want to have to see you go through another surgery. The more I thought about it, the more nervous I got. This was the first appointment that I actually did not want to go to.
For the last couple months, daddy kept saying that he thought you were getting fed too much. He thought that since you were eating every three hours, you never got the chance to actually be hungry. You never show hunger cues, and you very rarely take the 30 ml that they said you could take by bottle. For anyone that knows me, knows that I am a rule follower, so I never wanted to do anything different than what the doctors told us we could do. Daddy wanted to feed you every 4 hours, and I said we couldn't, that we had to stick with every three. If you went four hours without eating (which happened a few times due to appointments and an ER visit), you ate the full 30 ml. Maybe he was right.
Today, we had the dreaded appointment. You got your weight and length done first. You were 12 lb, 3 oz and 22.5 inches. The SLP and OT came in first. They asked us a bunch of questions. We told them that we didn't think that you were hungry because by the time we did the bottle feed and then tube feed, you would have to eat again in 2 hours. We told them that you usually take anywhere from 7-30 ml by bottle, with the average around 10-15 ml. We said that we thought you would take more if we were to space out your feeds (every 4 hours) and we also said that if we took away your 3 am feed, we felt that you would sleep at least from 10 pm - 6 am. I asked if I could breastfeed now that you will latch. She said that she would ask the dietician. We told them what you were working on with PT and OT, and then it was time to feed you. The SLP asked if we were still okay feeding you in the side lying position, and I said we are okay now, but that you were getting bigger and it was getting harder. She said that we could feed you side lying, and then try a normal position to see how you would do.
We heated up your bottle and then I fed you in the side lying position as the SLP listened to you eat. Half way through, she had me hold you like other babies eat, and you did great. She listened to you the whole time, and said that we would now be allowed to feed you normally. She also said that since you were doing well, you no longer had a limit as to how much you could take by bottle, and you could now take however much you wanted within 20 minutes. We were so happy! We heated up another 20 ml, and you took all 20 by bottle for a total of 55 ml!
Next, the dietician and NP came in. The NP asked a bunch of questions (and wasn't the friendliest). We told her about how you have been vomiting full feeds once or twice a day since mid-August. We told her the last 4 days you haven't vomited at all, but this morning you did. She said that she recommend that we get a pump through insurance to feed you your tube feed over a specified amount of time. We said that we didn't think it was necessary, and she said that if we changed our mind, all we had to do was call. I asked if she recommend that we see a GI doctor, and she said that she didn't think we had to, but that it wouldn't be a bad idea. We expressed to her the same concerns that we expressed with the SLP. The dietician didn't say anything at all, just took notes as we spoke. The NP looked you over and said that you looked good.
The next part of the appointment was where they all go talk together to come up with a plan. We felt so good about the appointment while we were waiting. We were so happy with you taking so much by bottle, and we were so happy that we can now feed you normally. We felt so close to that NG tube coming out!
Except when they came back, we didn't get the news that we wanted. She said that the dietician said that we couldn't feed you every four hours, that we had to stick with every three. She said that you need the calories, and since you are vomiting, increasing the volume and decreasing the feeds to 6 times a day would be counter productive. She said that I wouldn't be able to breastfeed because I wouldn't know how much you took, and because the breast milk wouldn't be fortified. She said that if I wanted to nurse you before bed, that would be fine. However, you aren't hungry now, so how in the world would you want more milk on top of all the milk that you get now? The NP recommended that you see the GI after all. She said that you may not be able to tolerate large feeds, so they would be able to work with us on that. She also recommended that you be fed with the pump. We were a little upset that we couldn't get your feeds to 6 times a day because we feel that you aren't going to progress with your bottle feeds since you aren't hungry. We expressed our concern, and she said that she would send in the dietician so that we could talk to him about our concern.
He said that at your adjusted age of 3.5 months, you should still be eating 7 times a day. He said that it is very rare for a baby of that age to only be eating 6 times a day. He also recommended that we increase your feeds from 105 ml to 110 ml to 115 ml. He said that changing your fortifier to 24 cal instead of 22 cal wasn't a good idea because usually it makes babies throw up, and you are already doing that. He said that if we were to go to 6 feeds a day, we would have to increase your intake during the day, and since you are already throwing up, that wouldn't help you. We told him that we were concerned because our goal was to get the NG tube out, and he said that we eventually will get there, but right now we need to make sure that you are getting the calories that you need. We told him that since our next appointment isn't until December 29th, that we were concerned because we feel like we get nowhere. He said that he is willing to work with us and that we can increase your feeds and see how you do in the next two weeks. If you are doing well, we can call and we will come up with a new plan so that you can progress.
We were a little upset after the appointment because we figured that you could at least eat every 4 hours. However, we have to look at the positives. You are now able to be fed on your back. You can take as much from the bottle as you want, and although you most likely won't take much, we know you can. There was no mention of the gtube - best part of the appointment! Although you will have your NG tube a while longer, we know it will eventually be able to come out. Although I was told I am unable to breastfeed when you finally decided you would latch, you are still able to get breast milk. So although we got some disappointing news, there are definitely positives.
We love you so much and are so happy that we continue taking steps in the right direction. We are so proud of you. We look forward to seeing how well you progress in the feeding area. We know you will over come it all!

Thank you so much to all of you who pray for us and pray for Mason. Our prayers continue to get answered, and we couldn't be happier. Mason is growing and is doing so well with everything. Please continue to pray that he can tolerate the larger feeds without vomiting, and that we can soon progress towards lengthening out the time between feeds.

Saturday, September 10, 2016

Progress with PT! - September 7th, 2016

Today before PT we were working on some of your exercises and lately when we do tummy time, you love just sleeping. Well, today, for the first time in a while, you actually lifted up your head and kept it there for a while! I was SO proud of you! I couldn't wait to show the PT what you did! Also, yesterday when I had you facing me on my legs, you reached for your feet! That is also something we have been working on - getting you used to the fact that you have feet! I knew she would be so happy for all the progress you have been showing!
When she came, Grammy and Poppy also came (they were going to watch you because I had a doctor appointment after PT). Everyone was so happy with all the progress you have made. You are starting to kick your legs up and move them to the side to roll over. You are getting so close! You showed the PT how you could lift your head during tummy time AND support yourself with your hands - you used to just lift your head and leave your arms out. We would have to tuck them under you! Now, you hold yourself up with them. She tried lifting you up from a lying position to see if you would bring your head with you - and you did! You are doing so well with your head control. This is something we practice every day. I am glad to see it paying off!
She put you in your Bumbo and gave you a toy to play with. You loved it. You did such a great job holding your head up and looking and holding your toys. You are starting to hold toys now and grab them if we put them in front of you. Sometimes if toys are on the activity mat next to you, you will grab them which is good too. I bought you a turtle that has buttons to push for music, and you are pushing them by yourself (or should I say hitting the turtle and accidently hitting the buttons haha).
You are making so much progress and we are so happy to see all the new things that each new day brings. You are such a happy little baby and we love seeing you smile! I look forward to being home with you and watching you grow for most of your first year!! We love you bub!!

Tuesday, September 6, 2016

NICU Follow Up - August 31st, 2016

This morning we had an appointment with the NICU follow up team. We were one of the first appointments. The nurse that took us back was one of our NICU nurses, so it made us feel comfortable from the start. She took and weighed you, but she did so with your clothes and diaper on, so it wasn't a true weight. She then told us how well you looked, and told us that the doctor would be right in.
The doctor came in and was so excited to see us. She said how wonderful you looked, and did a bunch of different things with you. She said that your tone was great, and that usually when babies are in the NICU for so long, their tone isn't so good. She listened to your lungs, put you on your belly, watched you track objects, and talked to you. All you did the whole appointment was talk, and she kept saying how she felt the need to talk back to you since you were talking so much. After doing all the things that she needed to do, she said that you were on track for everything, and that you were even ahead in speech. We were laughing because we told her all you do is talk at home.
She said that we would need another appointment in 4-5 months, so we scheduled that for February. She said that during the next appointment, we would be seeing a psychologist as well who would do a few tests with you. The psychologist actually stopped in for a few and introduced herself and told us that we would be seeing her during our next appointment as well.
The doctor told us about a NICU Graduate Reunion, and told us that we should have received an invitation in the mail. Since we didn't "graduate" from Virtua, I am assuming that is why we didn't get one. She invited us, and we got the information from our neighbors that we in the NICU with us. We registered, and we will be attending the reunion on September 24th. We are pretty excited to go and see the nurses that took care of you! When you get older, you can attend and go on all the rides!
We are so happy that the appointment went so well. You have come such a long way, and we continue to be amazed by everything you do. You are our little hero, and we are so blessed to have you in our lives. We love you so much, and can't wait to see what the next few months bring!

Six Month Appointment - August 29th, 2016

Today we had an appointment with the pediatrician. He said that you looked good and you were gaining weight like you were supposed to. He said that you throwing up one or two full feeds a day is also normal, as long as you are gaining weight. He upped your Prilosec prescription and did the same for your iron prescription. He asked us a few questions about your development, and said that you were doing well. He said that we should make an appointment for three weeks after your feeding appointment for another weight check, unless we had another specialist appointment where they would weigh you.
The nurse weighed you and you are 11 pounds, 4 ounces. She also took your length, and you are 22.5 inches long. Since this was your 6 month appointment, you also had your shots. You cried for a minute after, but then you were back to your happy self before we left.
On Wednesday, we have your first NICU follow up appointment. I am actually excited for it. They say that it can take up to two hours, and that we will see a few different specialists during the appointment. We also are seeing one of the doctors that usually delivered the bad news to us while you were in the NICU at Virtua, and regardless of having to deliver us bad news, we liked her. It will be nice to see a familiar face.
OT came again today. She said that you are doing very well. You are swatting at your toys, starting to hold on and grab toys, and doing well with all the exercises she has you do. You do a lot of work on the yoga ball, and you love bouncing on it. You are still not much of a fan of tummy time, and by that I mean you don't like to lift your head up, but you love sleeping on your belly. We are also working on sitting you in the bumbo and moving you all around. It looks like you are on a carnival ride.
We love seeing you progress. We can't believe that you are 6 months old already! It's crazy how time flies. We are cherishing every moment with you. We love you so much!!