Thursday, November 24, 2016

Neurosurgery Appointment - October 12th, 2016

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!!

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!

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.

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.

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!

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!

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!!

Thursday, August 25, 2016

My first... - August 22nd, 2016

At 3:00 am when I woke you up to eat, I noticed that you now had at least 20 more petechiae. I got very nervous - you didn't have a wet diaper either and you ALWAYS have wet diapers. I woke daddy up and told him about it. I went back downstairs and took your temperature which was normal, and noticed you had peed a little bit. I felt a little better, and decided we would just watch you until the morning. We could then call hematology when we got to CHOP to see if they could fit you in.
At your urology appointment, you had your first giggle. I was kissing your belly and you giggled about 4 times! It was the best sound I have ever heard!!! We were so happy that we were able to get it on camera.
When the doctor came in, he told us everything that was wrong and told us how they would correct it. I was told in the NICU that you would have your hypospadias, circumcision, and hydrocele repaired at 6 months. However, the doctor informed me that you will have the surgery at 6 months corrected. Which would be when you are 9 months. It would be a 2 to 2.5 hour outpatient surgery. He said that sometimes they have to correct everything in two surgeries, but after looking at you, he thinks that he can do it in one surgery. Let's pray only one surgery is necessary! He gave us all the information we needed, including having to give you testosterone shots 5 weeks before surgery and then 2 weeks before so that they can operate on you easier. You will also have a stent stitched into you and we will have to come back two weeks after surgery to get it taken out. We have to get clearance from hematology and neurosurgery first before you can have surgery. We see neurosurgery in October so we can get clearance then, and I have to call hematology to get clearance from them. Other than that, we will schedule your appointment next month for sometime in November.
Another surgery that I will be a nervous wreck for! I'll never get used to you having surgery. Now I know how my parents felt when I went through 5 surgeries (and a traumatic childbirth). I pray that everything will be fine and we will be able to take good care of you at home after the surgery.
Later on daddy took me out on a date. Our first time away from you at the same time (besides the NICU stay). Mom Mom and Pop Pop watched you after your 6 pm feed. We had a nice dinner together. I wasn't as nervous as I thought I would be, but I still like to be with you as much as I can. I know that before I know it I will be going back to work and missing out on a big chunk of your life. I want to cherish every moment with you that I can, while I can!
We love you so much and love watching how much you are growing and learning. PT and OT are really helping, and they are both so impressed with all of your progress. I do have to say that I work hard every day making sure we practice what they tell us to practice. It is the only way we can keep up and hopefully get ahead of where we would be without them. Keep smiling and giggling!!

ER Visit - August 21st, 2016

Last week we increased your feed from 105 to 110 on the 16th. You got sick at your 3 and 6 am feeds, so that meant that it was too much for you. We backed down to 105 ml and that is where we would stay. You had PT on the 17th, and you did well. You are doing so well with holding your head up on your own! You went to another party for a friends 30th yesterday, and you slept through most of it.
Today, we went to church for Delaney and Nora's baptism. They were your NICU neighbors at Virtua. We went to a nice lunch at their house after church. You met a lot of new people, and met tons of people that have been praying for you! It was nice to meet so many people who have been praying for you since you've been born.
At lunch, we fed you and you got sick after. Threw up your whole feed. You have been doing this a couple times a day for a couple days and we aren't sure why. You have been screaming during your tube feeds when you are awake as well. You also have developed a few more dots on your left leg which are called petechiae. This also worries me. I decided to contact your pediatrician to see what he said. He told us to go to the CHOP ER. Guess we weren't going to the second party that we were supposed to go to today.
Off to the ER we went. We went at about 4 pm. They asked what was wrong with you and I said that you were throwing up, screaming while taking your NG feeds when you are awake, and you had petechiae on your legs. She asked what medical problems you had were and I started with hydrocephalus and she said next time just say "hydrocephalus and vomiting" and that will get you right back. So we were taken right back and they came in to get your medical history. The NP took a look at you and then said that she had to talk to the doctor and then the doctor would be in. The NP counted 5 petechiae. The doctor came in and took a look at the petechiae, and said that they were going to change your NG tube because it sounds like it might be irritating you. I asked if they could put it in your right nostril since it had never been in that nostril, and because we can't get it up there. She said that the nurse would gladly do that for us.
What seemed like hours later, you got an IV in your arm just in case you needed any fluids, and you also had blood taken. The nurse did your NG tube and had a little bit of a rough time getting it in your right nostril. The first time she got it in, she had to take it back out because you were coughing which meant that it wasn't in the right place. She gave you a break because you were screaming. She came back in a little later and put it in again and checked to make sure it was in the right place. Daddy taped it to your face because the nurse wasn't doing it the way we did it at home.
Meanwhile, one of your NICU nurses came to visit us! We just love her. It was so nice to see her. She said she didn't even recognize you because you have gotten so big! She couldn't believe that you are almost 6 months!! She met you when you were just 3 weeks old. She definitely was a nurse that kept me positive and always looked after not just you - but me as well. She was there for me when my fears came true and they had to bag you because you weren't breathing. As I cried, she hugged me. No words were needed.
A little later they came in and told us that your blood work looked great and that we just needed to feed you and if you kept down your feed, we could be discharged. It took them forever to come around to heat up your bottle. When we got your bottle, it was cold. You were starving, so it didn't really matter to you. You downed all 30 ml like a champ! Waiting around for someone to come in to heat up the other 70 ml of your feed took forever as well. (We decreased your feed from 105 to 100 just in case that was the reason for you getting sick.) After we finally had your milk heated up, I asked for a syringe and a line, and the lady went searching and came back with the line, but that didn't fit the syringe that they had. Luckily, I looked in the diaper bag and I had an extra one. We would probably still be there if I didn't have an extra one on hand!
We fed you by gravity and no one even came in to check on you. You finished your feed and just laid there for a little bit. The NP finally came in to ask how you were doing and we said you finished your feed and that if you were going to get sick, you probably would have by now since you were laying down. She said that she would go to get the discharge papers ready.
Meanwhile, I asked your nurse about an hour ago for a pump because I was full - she went looking for a pump to feed you your milk, not a breast pump. Maybe next time I need to clarify! She had someone go grab one so that I could pump while the discharge papers were being prepared.
Finally, daddy signed all the papers and we were able to leave. They said to just watch the petechiae, but they couldn't find a cause for it. They did contact hematology who were not concerned.
At about 11 pm, we were able to go home, just to get up early to be back in the morning for our 8 am urology appointment.
We are so happy that nothing is wrong! Now we just have to make sure you aren't screaming and/or vomiting with your new NG tube, and we have to watch to make sure the petechiae don't increase. We love you, bub!

Clearance! - August 15th, 2016

Over the weekend you were able to meet your Great Aunt Marybeth and Great Uncle Roy. We were so happy they came to visit and meet you! You also got to see Erin and Justin again. We also took you to Steve's birthday party, and you met a lot of friends there as well! We had a busy, fun-filled weekend!
Today, we had three appointments. One with Hematology, one with ENT and then your OT. At your hematology appointment, they told us that you would most likely always have your blood clot. That scares me to death - and that is even an understatement. They said that since you have had it for so long, it has hardened up and new veins grew around it so blood could get around the clot. They said that if we notice you favoring that leg when you start to crawl and walk, to let them know. They said that if that leg is cold and the other is warm, to let them know. Our concern was that parts would break off and go to your heart and they said that since it is hardened, it is very unlikely that that would happen. They said that your left thigh would always be a little bigger than your right because of the clot. They measured your legs and then told us that you were good to go and we did not need another appointment with them unless something was wrong. I asked them about two dots that I noticed that showed up - one on each foot and they said just to watch because it could be something called petechiae. Other than that, we were finally clear from one specialist! Woo hoo!
Right after our hematology appointment, we had our ENT appointment because we couldn't get your NG tube up your right nostril. It had never been in your right nostril since it was put in. The doctor came and said that he needed to do a scope, and I knew you were going to scream. He first put the scope up your left nostril and it went right in. He then took a look up your right nostril, and was able to go right in as well. He said that your right nostril was definitely narrower than your left nostril, but that we should be able to fit the NG tube up your right nostril. I thought that maybe they would do it for us - but they didn't. They said we could come back if we had any other issues and gave us a nasal decongestant to put in your nose before trying to fit the NG tube up your right nostril.
Our last appointment was with OT. She said that you were doing great and did her usual therapy with you. We are working on developing your vestibular system. You work on a yoga ball, we work on putting different textures in your mouth, doing joint compressions, and we also work on grasping and swatting at toys. Overall, she said you are doing well.
Phew. What a busy day. We are glad we are free from hematology, and that there is nothing wrong with your right nostril. You did spit up basically your whole noon feed at 2 today which is unlike you (but could just be because of your work with OT), so we will just have to watch to make sure everything is okay. Other than that, we are happy to be back home to relax!
We love you and are so proud of how well you are developing. You are doing great!! We are happy to be able to take you out of the house more, and can't wait to go on more walks with you once the weather cools down a bit!

Thursday, August 18, 2016

Where Did Mommy Go? - August 11th, 2016

Yesterday I said how another mom in the group gave me her number and told me about the other breastfeeding support group. In the back of my mind I knew I wasn't going to go. I wouldn't know anyone there, I would have to drive alone with you again, and I would have to travel 30 minutes away. Although part of me wanted to go, a big part of me knew I wasn't going to.
However, as the time came closer, I was trying to force myself to go. I kept telling myself that I need to meet new moms, it would be good to get out, and I would get to talk to another LC. I looked at the clock and it was 11:15. The group started at noon. I was at least 30 minutes away, and to top it all off, I had no idea where to go once I actually got there. I text a friend and asked her if she thought I should go, and she told me yes. I ran around trying to get everything that I would need to go, and I text the mom who gave me her number asking if it was okay if I came a little late. She said it was fine and I hurried up and got you ready.
When I got there, of course I went to the wrong place. I called the other mom and she told me where to go. We finally got there around 12:15 and there was only one other mom there. Another came a little after me. The LC wasn't even there yet. As 12:30 approached, the mom that invited me called the LC and turns out, the mom had her Thursdays mixed up. Group was next week, not this week. We still stayed and chatted with our babies and then left around 1:15. The LC even called in parking passes for us which was very nice.
I can't believe I went somewhere without knowing anyone. I don't know what happened to me. I am glad that I got out and went even if it was the wrong Thursday. It was nice getting out of the house for once. I am sure you enjoyed it too!

Busy Day - August 10th, 2016

Today we had a very busy day. Three things happening today. First was a pediatrician appointment, second was PT, and third was a breastfeeding support group that I wanted to join. Then, it was definitely time to relax after such a busy day!
I brought you to the pediatrician this morning. It was supposed to be an appointment to check on how your feeding was going since we can't get in to see the feeding team until next month. They weighed you and you had only gained one pound in one month so they said that you were on the low end for gaining weight. In this month, you had your lip and tongue tie revised, and we took out your tube for 2 full days. You did not take 1/3 of what you should have taken during those two days, so of course you lost weight. When we go again on the 29th of August to the pediatrician, I know you will go back to gaining more weight than needed since we are back to your normal schedule. Other than that, she old us to go from 95 ml to 100 ml and after that to increase to 105 after four days and then to 110 if possible after four days.
At 12:30 you had PT. She says that you are doing well. You are getting lazy during tummy time and like to fall asleep instead of lifting your head. You were also very sleepy during the session, but she did what she could with you. She told us a few things that she wanted us to practice, and then she left.
Right after she left, we went to the breastfeeding support group. I was very nervous because I never go places if I don't know at least one other person there. I felt like I had to go because the LC that we saw said that I could stay a little after the group to talk to her without being charged. I thought that was very nice of her, and kind of felt obligated to go. We went and we had a good time. I met new moms and we talked about our struggles. I was the only one there that bottle fed, but everyone made me feel comfortable. I didn't feel like anyone was judging me. We were even invited to another breastfeeding support group every other Thursday at a different hospital. Another mom gave me her number and told me that if I wanted to go tomorrow, I could. I said I would let her know either way.
So, aside from it being a crazy busy day with these three things, today was the first day I took you out of the house by myself. No one was in the back seat to watch you. It made me very nervous and every time we stopped, I would reach back to see if you would move - which you did. I took you to the pediatrician alone, and then to the breastfeeding support group alone. We did great. I am still scared to do it again, but I am glad we did fine.
As for an update on eating, you did much better yesterday and today. I am hoping that as you heal, you get better and better with eating. They say it takes two weeks to heal, so we keep doing your exercises (which you scream while I do them) and hoping that it heals quickly.
We love you and love how well you are doing. You are growing so much and you are 10 lb, 7 oz. You are getting so big! Pretty soon you will be out of your 0-3 month clothes!

Tuesday, August 9, 2016

Progress - August 9th, 2016

You haven't been drinking the best since getting your tongue and lip ties revised since you have to relearn how to use your tongue. It has been a rough road. We know that it takes two weeks for it to heal and to hopefully see improvement. Tomorrow will be one week since you have had the procedure done. You have been taking half of what you did before the procedure.
Today a friend came over and we were going to bake cupcakes. We baked cookies last week and had a blast so we decided to do it again this week. Last week when she was over, you took a lot from your bottle. Today when she was here, you took 30 ml not once, but twice! Today was the first day that you took 30 ml (the most we are putting in your bottle right now) since your procedure! I did one thing a little different, and that was putting my finger under your jaw to stabilize it while you are drinking so you don't have to do as much work. I learned that in the NICU from the SLP. One of the times that you took 30 ml, you didn't even dribble milk out the side of your mouth! Progress! We still have A LOT of work to do, but I will take it!
We are still trying to work with you on the suck training, and you rarely will take your pacifier. We continue to do your stretches 4 times a day (which you absolutely HATE). You just started to do the suck training yesterday which was exciting. One step at a time. I continue to work with you every day on your stretches, suck training, and trying to get you to take the pacifier. It is very time consuming, but in my mind, it is all worth it. We do this in addition to everything that PT and OT ask us to do 3 times a day. I am blessed to be able to be home to work on you with all of this. I have no idea what I would do if I wasn't able to be home with you right now. It is a lot of work, but I wouldn't have it any other way.
Tomorrow we have the doctor which the appointment was to talk about your feeding since we can't get into the feeding team until the middle of next month. Your pediatrician is on vacation so I am not too positive that we will get any information on how to progress from where we are now. We have PT tomorrow, and we are also going to the breastfeeding clinic tomorrow. Very busy day. I already can't wait to get home and relax!
We love you so much and love how much you are talking to us! You are starting to grab things better and you are definitely swatting at the hanging animals on your activity gym! You are doing well with holding your head up as well. As far as tummy time, you are getting lazy and just laying on your belly (which you love by the way). Hopefully we start to do better with tummy time! Other than that, you are doing fantastic!

Lactation Appointment - August 5th, 2016

Today we had our appointment with the lactation consultant. Daddy came with us since I still don't feel comfortable with leaving you in the backseat alone yet. I am glad he came to the appointment - he had a lot to add to the questions that the LC was asking us.
The LC was so nice from the moment she saw us. She asked us a bunch of questions and tried to make us as comfortable as possible. I brought the shields I was given in the hospital, along with the boppy. We told her our complicated medical history, and she started to help us out. She told us to do what we would normally do nursing wise, and I told her that we haven't done much in a while so I showed her what I learned in the NICU. You weren't a fan of much since you recently had your procedure. You didn't really want the bottle, a pacifier, or to nurse. You didn't really want anything in your mouth. The LC told us to try a few times and then take a break. Well, we weren't getting anywhere. She said that she thought you had a strong oral aversion, and she said that she was going to contact our pediatrician to see if we could get into therapy. I was planning on going to a breastfeeding clinic at the hospital next week, and I said I guess I shouldn't go then since he won't latch. She encouraged me to go and asked if I would be willing to stay after the clinic so we could see if we could do anything else. She said that I was still technically a breastfeeding mom since you were getting breast milk. I know that is true, but I was still so incredibly upset as we left.
She gave us a few things to try such as give you a bottle, then try nursing, then do your tube feed. She said to soak the nipple shield in my milk for about 15 minutes before trying to nurse, that way you smell the milk. She said to offer you the pacifier while you are being tube fed so that you could associate sucking with getting full. She said to still try to "suck train" as long as I could.
It was definitely an upsetting day for me. Daddy tried telling me that it was okay and that it had only been a couple days since you had your procedure. I was still so upset because I feel that nothing comes easy with this journey. But if this is the worst thing that is going on right now, I will take it. You are home, and that is all that really matters.
We love you so much and love seeing how much you are growing. You are smiling and talking a lot now. We actually haven't even had the monitor on you at night for a few nights now! You are doing great with PT and OT. We are so happy about your progress!!! Keep it up Mason!

Thursday, August 4, 2016

Outcome of Procedure - August 4th, 2016

We met with the pediatric dentist and he took our history and looked at your tongue and lip ties. He said that your lip tie prevented you from flanging out your lip and we told him your lip actually curled under when taking a bottle or a pacifier. He asked if we tried to flange your lip out by turning the nipple and I said that they tried in the hospital but it didn't work and he said there was no way they could. He said that you were using your facial muscles to drink by bottle since you couldn't properly latch. I asked him if that was causing you to become tired early and he said it was possible. Your tongue tie he said was preventing you from really drawing out milk by bottle or breast. He said your range of motion was limited, and if released would be better. After telling us that we had a unique situation and that he wasn't positive releasing the tongue and lip tie would correct all our problems, he said to talk it over to see if we wanted to go through with it.
We decided it would be best to at least get the procedure done because there was a chance that it would correct your latch issues and we hoped that it would make it easier to eat for you. He had us give him your swaddle and said one of us could go back with you. We had daddy go back with you and then he came back a few minutes later without you. The procedure took about 3 minutes and you were back in the room - screaming and crying. I held you while the dentist told us about the stretches that we would have to do with you for the next two weeks. He made sure that we knew how to do them before leaving (I had to show him that I could do them) and then he said we could feed you before leaving if we wanted and said we could take as much time as we needed before leaving. We left shortly after and you calmed down and slept on the way home.
When we got home, I fed you and you seemed fine. We didn't give you Tylenol since you didn't seem in pain. We took a nap on the couch together, and then you woke up screaming. I noticed your top lip was swollen (which the dentist did tell us would happen) and so we gave you some Tylenol. We did some skin to skin since that is supposed to help you with pain as well. You weren't the happiest baby, but who would be after having their lip and tongue lasered??
You wouldn't eat after that for a while. I was getting nervous since you didn't have your tube in anymore. Finally, around 5:30, you took 72 ml. The most you have taken by mouth - ever! We were so happy! During the night when I woke up with you, you only took half an ounce each time. In the morning, you did the same. One feed today you took 49 ml, but the rest were around 15 ml. We decided to put your tube back in today because you were only taking a third of your feeds. We didn't want you to get dehydrated. The dentist did say that it might take you a few days to learn to eat again because of the procedure, so we are hoping that you learn soon and don't tire out so quick. I was definitely upset we had to put it back in, but it's for the best right now. Hopefully soon we can take it out again.
Tomorrow we have an appointment with the lactation consultant. This morning I actually tried nursing you since you wouldn't take much from the bottle and you latched great - but I had a strong let down and you gagged. On a positive note, it didn't hurt! Hopefully tomorrow we learn to nurse well and we can continue practicing our nursing journey.
So, all in all, the procedure went well. We just need you to learn how to eat again with your new range of motion. Now that I think about it, I didn't hear you cough at all today due to reflux, but that also could have something to do with the tube being out.
Please pray that Mason learns how to eat better soon so that we can take the tube out.
Please pray that he heals well.
Again, thank you so much for all of your prayers - it has got us this far and I know it will get us through this as well!

Tuesday, August 2, 2016

Procedure - August 2nd, 2016

Last week the only things we had going on were our PT and OT appointments. We practiced 3 times a day everything they asked us, and it paid off! The lady that does PT said that she noticed an improvement with you! She is going away so she won't be here this week, but gave us plenty of things to work on. We are trying to get you to hold on to things, and you are trying. We will get the hang of it. One thing that we can do now is lay on our side and then when we move a toy to the other side of you, you follow it and roll your body over. You are also unintentionally swatting at things which they said was good.
As far as OT goes, she has us do some weird things. She has us hold you in a blanket and lift you up and move you around. She wants us to massage you and massage your palms with a washcloth to get used to a different texture. This week she has us spin you in circles and make sure that you can find us after (not fast, and no more than three times). She also has us doing joint compressions. All interesting things!
As far as bath time goes, you don't mind it now that we do it in the hospital basin. You just sit there while we wash you and don't really show a like or dislike for it. We always weigh you after and we figured out that the scale at home is 2 ounces lighter than the scale at the doctors office. On Saturday, you were 10 lb, 5 oz! Getting so big!
As far as feeding goes, you were still doing poorly with bottle feeds. Taking a minimum of 4 ml and a maximum of about 27 ml. That isn't close to your full feeds at all. I have been reading in my preemie group that a lot of the moms demanded that their babies go ad lib - meaning their babies just eat when they are hungry so that they can take out the tube. For many of them, it worked. I asked the pediatrician and the feeding team about it, and the pediatrician said to go for it! We haven't heard back from the feeding team yet. Our pediatrician told us we could yesterday, and today we took out your tube and started feeding you when you were hungry. At first you weren't taking too much, but you are doing much better tonight. You took 2.5 ounces between 7 and 8. We are going to feed you soon and see how you do then. As long as you take between 20-25 oz a day, I think you will be good. Now lets just hope we can do that so we don't have to put the tube back in!
Tomorrow you have your lip and tongue tie revision at 8:15 am. I am SO nervous about it. I have heard from other people who had their babies revised that the babies scream when it is done and that they are very fussy for a couple days. Some babies eat a lot after, and some don't eat at all for a while. I really don't want to see you in pain, so I hope that you do well with this. People said to do a lot of skin to skin because that helps with the pain. So that is exactly what we will be doing! We also bought Tylenol just incase you need it. The dentist said that you shouldn't need it, but to bring it if we felt more comfortable. I called insurance to see if they cover the procedure, and they won't cover it until you are 2 years old. We will be paying out of pocket, but I hear it is worth it. I have heard it helps speech, eating, reflux, and a lot more. The tricky part will be going in your mouth to do the stretches every 4 hours so that the ties don't reattach. Pray for us!
Other than that there isn't too much going on. You have been talking and smiling more. You are such a calm baby. Every now and then you can be fussy, but boy did we get lucky with you! Even OT and PT say how calm you are. Definitely our little miracle. We love you buddy!!

Please pray that Mason is able to take enough milk to keep him gaining at least .5 oz a day.
Please pray that Mason's procedure goes well tomorrow and that he isn't in pain.
Thank you so much - we are so blessed to have you all in our lives!!

Monday, July 25, 2016

Feeding - July 22nd, 2016

Yesterday for bath time we put you in a hospital basin and you did great. No crying or anything! I guess that is what we will do from now on since you seem to like that. After your bath, we weighed you and you weighed 9 lb., 13 oz. SO close to 10 pounds! That is crazy!
One thing that we need to work on is feeding. You have been doing great, up until today. Today you haven't really been taking as much as you have been, with 9 ml being your lowest feed of the day. You did take 25 ml once. I am hoping this is just a one time thing and you will be better with it tomorrow. This really worries me because if you stop progressing, I am almost positive that the feeding team will bring up the idea of a g-tube at your next appointment in September. That is not a surgery that I want you to have (not like I want you to have any surgeries), and I am just praying that you will start eating better tomorrow.
I contacted a LC for when you have your lip and tongue ties revised (hopefully) on August 3rd. It is not a definite yet, but we are going to go in for a consultation and he said that if we want you to revise them that day, we can, and if we want to wait, we can do that as well. It takes 3 minutes and there is no blood. This pediatric dentist lasers the ties and then you have to do two weeks of exercises to prevent them from reattaching.
The LC hasn't replied back to me, but the pediatric dentist recommended that I see the LC before and after our appointment since my goal is to try to breastfeed after the ties are revised. If it works out, great (I get a break from the pump), and if not, I am still blessed to be able to give you my milk regardless.
I am definitely nervous about the appointment, but I am hoping while we are there the dentist will make us feel more comfortable about it. If not, we don't have to go through with it. I have heard that it helps reflux, and I am hoping that it will help you eating as well. More pros than cons, and hopefully you do well through it.
We love you so much and enjoy watching you grow so much! Your smiles make my heart melt. You love to smile, and it is so nice to see!!!

Please pray that Mason continues to progress with his feeds and we do not have to have a g-tube.
Please pray that if we go though with the lip and tongue ties getting lasered, that it is relatively pain free and you have no aversions because of that.

First PT Appointment - July 20th, 2016

This afternoon was our first PT appointment. I wasn't really sure what to expect, but I knew that the appointment would last an hour long. I was hoping that I could get some good ideas of what to work with you at home on so that we could get you as strong as possible! Luckily, the PT came with tons of ideas for us.
Your PT came at 12:30 and introduced herself to us and immediately sat down on the floor to work with you (after washing her hands of course). She spoke with me about our goals for you and what we expected you to do in 6 months. I told her that when we had our family appointment, we basically felt as if we were laughed at when we said we would like you to move towards crawling and she said that it is just a goal, and if we hit it, great, and if not that is okay too. She really wasn't too concerned with the goal, and said that yes, it is a little harder of a goal for him to reach, but it is definitely possible.
After we spoke about the goal, she took you and did a few things while asking me questions about what you have been doing. She was very nice. She said that you were such a calm baby and that she now has baby fever (haha). She taught us so many things to do together to work on reaching some milestones and developing your strength. I was worried that I wouldn't remember everything that we did together, but luckily she wrote it down for us. She said that we should aim to do your exercises 3 times a day for 5 - 10 minutes each. One of the helpful things that she taught us was to keep tapping a rattle on the floor next to you when you get upset at tummy time. It really works to calm you down. You are now able to tolerate tummy time a lot longer than usual!
We are now going to have a new schedule incorporating tummy time and the other PT exercises she taught us. About 15 minutes before your feed 3 times a day we are going to work on these exercises so that you get nice and strong. Hopefully after doing them so much, we will see improvement next week!
One of the things that she said you were "behind" in, was grasping toys. You don't really grasp anything yet (occasionally you grasp our fingers), but that is another thing that we are going to work on. She also said that OT would work on that with us as well. Another thing that I liked about this lady is that she said early intervention does not correct for prematurity, but she likes to because obviously you are not going to be doing the same things that other babies your age will be doing.
I am so happy that we now have a plan with PT to get you working more to strengthen your muscles and practice skills so that you can meet more milestones. You are doing so great and we can't wait to see how much you improve in the coming weeks and months with these therapies. We love you so much!!

Eye Exam - July 19th, 2016

Today we have your eye exam. Mom-mom is coming with us because daddy has to work. She is going to pick us up so that I can sit in the back with you to make sure you are all good! I am hoping that the appointment goes well!
We got to the appointment and there was no one in the waiting room. We got right in and the lady that took us back was happy to see you again. She said that you grew so much from three weeks ago. She did your first set of eye drops and said she would be back in ten minutes to do the second set. Ten minutes or so later, she came back to do the second set. She said she didn't think you would need a third set. She came to check on you ten minutes later and said that you were good and the doctor would be right in.
The doctor came to look at your eyes and said that he couldn't see anything! No more ROP! Woo hoo! He said that he didn't need to see you back for another SIX months! No more every two weeks finally! I was SO happy to hear that. It is always nice when things are headed in the right direction after what you have been through.
After the appointment, mom-mom treated me to lunch and we went back to the house to eat. She stayed for a bit and then she had to leave to go to a meeting.
That was pretty much the excitement of the day. We love you and are so happy that you have no vision problems so far. That was definitely a relief! Keep growing buddy!

Saturday, July 23, 2016

Second Outing - July 17h, 2016

This morning we went out to breakfast with mom-mom. We were waiting outside for our table (the place is small inside) and I was carrying you. People did their usual "aww" and then a lady came up and asked how old you were so I did the "5 months but he was born 14 weeks early" thing and she said "is he going to be alright?" and I think after she said it she realized what she said. Yes mam, he is going to be okay, thank you for asking.
When we sat down to order, the waitress said "how old?" and I said 5 months and left it at that. She then said "wow, he is so small" and then of course I explained how you were premature. I decided that from now on I am going to just say you are whatever your corrected age happens to be at that time. Much easier that way.
Anyway - we had a good breakfast and you only cried for a couple minutes. It is a loud restaurant, so no one heard. You did great for your second outing!
Tuesday you have an eye exam and on Wednesday you have PT. Your first session. I am excited about it to see what types of things they will do with you. I am also excited to be able to learn about different things I can do with you to help you develop more.
We love you and are so happy that we are able to take you to other places. Of course we will only take you places when there are two of us since you sometimes choke in your car seat and we wouldn't be able to know that if no one was in the backseat with you. I'm sure the time will come before we know it where you will be alright on your own in the back. We can't wait to take you to other places!!

Saturday, July 16, 2016

Our First Family Outing - July 16th, 2016

Yesterday at 3:59 pm, I heard my phone ring but I was busy with you. I figured if it was important, they would leave a message. Of course I heard the tone for my voicemail go off. After I was finished doing what I was doing, I listened to the voicemail. It was the pediatric dentist that would possibly laser your tongue and lip tie. I called right back and they were closed. Of course. I will have to call on Monday to schedule an appointment with them.
Last night we had Christine and Steve over. They picked up dinner from Tarentella's and we ate and hung out. Christine got to hold you for a little bit. The neighbors stopped by as well. It was a late night for me. I was tired at 9, but managed to stay awake a little while longer. I slept until my alarm went off at 8:30 this morning, which never happens.
This morning I got up to get you your Prilosec and then sat in bed reading because apparently we were all tired from a late night and you and daddy were still sleeping. At 9 I had to wake you up to change you and to feed you, and I let daddy sleep in. I got a text from Cait that they were going to leave their house at 10, so I went upstairs to let daddy know so he could get up with enough time to get ready.
Around 10:30, Cait, Chas, Cooper and Callen came over. Callen had a great time since we now have some baby stuff in the house. Cooper was so excited to meet you. We have a few good pictures of you two. Cooper has the biggest smile on his face as he was sitting next to you in your bouncer. You also smiled at Cait which is great! You are starting to smile even more! We had a good time visiting with friends. We will be able to do that more soon.
Daddy asked what we were going to do for lunch. He said that he wanted to take you out to lunch. Now anyone that knows me knows how neurotic I am about you and that I do not want you to go out in public because I don't want you to get sick and end up back in the hospital. I know you do not have any immune issues (besides your chronic lung disease from being a preemie), but it still makes me nervous since I sat in the NICU with you for 111 days. That is not something I would like to go though ever again. Anyway, I agreed. Yup, you read that right. I told daddy we could take you out to lunch. In public. Our first family outing. We went to Otts and had some lunch. You were the perfect little baby. You didn't cry or fuss or anything. We had a successful first outing.
I bought a book last week when I went to Barnes n Noble that I have been reading while pumping. It is Emily Maynard Johnsons book I said Yes. Some of you may know her story, some of you may not. Her fiancé was a Nascar driver and he had passed away in a plane crash and she later found out she was pregnant. One of the things she said in her book was that she would do anything to keep her baby safe. That got me thinking. I have no idea why I started thinking about this, but I did. I started questioning what would of happened if I went to the hospital earlier than I did. I felt the "contractions" that I didn't know were contractions of course at that time, but if I went to the hospital when I started feeling them, would things be different? Would they have put me on bed rest and given me medicine to keep you in? (They did say that I wouldn't be leaving the hospital when I went in that night until I had you, but we all know I wasn't able to keep you in long.) If I would have known that they were contractions, could I have kept you safe? I know they said there was nothing I could have done and it was NOT my fault (they made it very clear in the hospital to let me know that it was NOT my fault), but what if I went to the hospital earlier? I now feel like maybe there was more I could have done that day to keep you safe. I have no idea where these feelings came from. I told daddy about them and he said he was going to make me stop reading! We all know that will never happen.
Anyway, there is nothing I can do at this point. I can't go back in time, but I also can't help but to wonder. I am just glad that you are here and I hope and pray that there are no long term disabilities that you will have from this. The hydrocephalus is under control (and I hope and pray that it continues to work properly) and we are going to be working with PT and OT on your development. I just want the best for you. We love you with all our hearts. You make us SO incredibly happy. And no matter what happens in the future, nothing will ever change that.

Your Main Goal - July 13th, 2016

Woo hoo - I am finally at 100%! Finally not sick anymore! I am lucky enough to have an amazing husband and an amazing family to help take care of you. I think that is the reason you didn't get sick. They did everything so that I could stay away and rest to get better.
Yesterday we had to replace your NG tube because you decided that you wanted to pull it out. I hate when we have to replace it, because you SCREAM at the top of your lungs. Not because it hurts, just because it must feel so weird. They told us in the NICU that it tickles as it goes down your throat and into your stomach. Daddy is a pro at putting the tube in. He has had to do it quite a few times now.
I remember the class that we took at the hospital about the NG tube. The instructor told us that we needed to keep changing the nostril that the tube goes in. As daddy tried to put it in your right nostril, he couldn't quite get it. He tried multiple times, and I cringed each time because it looked like it was hurting you. After a few tries, I said to just put it back in the left nostril. This wasn't the first time that we have tried the right nostril. We thought back to the NICU days, and it was always in your left nostril. We aren't sure if that is because they couldn't get it in the right nostril, or they just kept it in the left.
Today we had to get up early and get your feed ready so that we could feed you in the car on the way to your neurosurgery appointment. Of course I didn't leave enough time to do half of the things I wanted to do. I got out of the shower only to realize that I still had to dry my hair and that it was 8:40 and we needed to leave in 5 minutes. I also noticed that daddy left you in your mamaroo and hadn't even changed you or anything. I decided that I wasn't going to dry my hair and I literally started running around trying to get you ready as daddy was in his office working. We got out of the house a little later than we wanted to, and we got to the appointment 5 minutes late. Luckily, they still took us.
We were so excited to see your neurosurgeon. We just loved him in the hospital. He was hilarious, and that definitely helped because the time in the NICU was far from a happy time. They called us back and a lady came in that I thought was the nurse that would take your head circumference and ask us questions. Come to find out, it was a doctor and we were not going to see the doctor that did your surgery like we were supposed to. That was a disappointment. She was nothing like him. She was very informative and said that your shunt is working properly and told us the signs if the shunt were to fail, but she was definitely not the doctor we looked forward to seeing. She said that she wanted to see us back in 3 months. Hopefully in 3 months we will be able to see the neurosurgeon.
We stopped at a drive thru on the way home to get some lunch and then we had to go home to eat and feed you again. We still had time before our next appointment, so I tried getting a lot done that I usually get done between 9 and noon. I wanted to nap, but didn't have the time to do that. I would just have to go to bed early.
Daddy forgot all about your appointment at 5:20, until I said something about it around 4:30. It never fails that he gets on a phone call right as we are supposed to leave for an appointment. It never fails. So, as I was getting you all ready to leave, and as we were supposed to walk out the door, he gets on the phone. I was going to leave and just take you by myself. It just makes me nervous because you like to choke when you are in your car seat, and if I am in the front seat with no one in the back seat, I may not see you choking and that just wouldn't be good. So I got you in your car seat and into the car. I started the car and got in the front seat and adjusted the settings so that I could take you to your appointment. I hate being late. All of a sudden I hear a faint noise, and I got out of the car to just make sure that everything was okay. I got in the back seat and you had projectile vomited all over yourself and the seat in front of you. Ugh. I ran inside quick and told daddy and he came downstairs and I told him he needed to come so I could sit in the back seat. We were going to be late again.
We waited to clean you up until we got to your appointment. We never have to wait which is nice, we always get into the room quickly. We took off your clothes and your diaper so that we could weigh you. You weighed 9 lb, 6 oz. You are a little chunker! I love it! We then put on a diaper and waited for the pediatrician to come in. He checked you out and told us that you were gaining more than you needed to which is great. They want you to gain half an ounce a day. You have no problem doing that! He asked about any concerns that we had and the only "concern" I had was whether it was safe to give you Prilosec at 8:30 pm since we were late with your dose this morning. He said it was fine. I asked daddy if he had any questions, and he did. Usually I have a list and daddy is quiet. It was the opposite this time.
Daddy asked about your tube and told him that we can't get the NG tube up your right nostril. The doctor said that he would try it but he didn't want to bother you even more than we already did. He said that sometimes there is something in the way, or maybe the bone didn't fully grow. He recommended that we see an ENT doctor and said that they would take a look to see what was going on. Another specialist.
The doctor talked to us again about your ultrasound, saying that your veins were growing around the clot. I asked about a piece of the clot breaking off and he said that it was rare. That is what the hospital told us as well. It is still a concern of mine. He said that he would like us to also follow up with hematology, just to see if there is anything that they would want to do. Also, we could come up with a schedule of when to get ultrasounds, since it has been staying the same for a while.
I think your goal is to see how many specialists you can see. You are doing a great job at it! I don't care about it as long as you stay healthy. I will gladly take you to every single appointment if it means keeping you healthy.
I will call tomorrow and make your appointments with the ENT and hematology. Hopefully we can get in sooner than later for the ENT. I am not too worried about hematology since we just had an ultrasound, but I wouldn't want to wait too long.
We love you. We are so blessed to have you as our son. We enjoy every day with you!! There is no where else that I would like to spend my days than at home with you! You are my little love!

Home Care - July 11th, 2016

This morning we had an appointment with CHOP home care. I wasn't entirely sure what this appointment was really for, but on the phone they said that they were from respiratory, so I figured it was about your pulse ox. I was right. A nurse came from CHOP to check the pulse ox, make sure everything was working correctly, and to see if we had any questions.
I did have one question for him. I have noticed that your oxygen level went down from 100% to 95% and sat at 95% all night last night. I was worried that I had got you sick. (By the way - I am STILL sick! Better, but still sick.) He said that it was completely normal, and that I should only worry if it is staying around 90 or below. Thank goodness.
Later today I took your temperature (because I am neurotic and I am convinced that you will get sick since I have been sick for what feels like forever) and it was 99.6. Great. You felt warm, and I just knew you were sick. I JUST started handling you again today. Daddy said that it was because you were in your bouncer and that you are always warm when you are in your bouncer. I said that I would take your temperature again later to see if it changed at all. If so, I was going to have daddy go out and get you some Tylenol.
I took your temperature the next time I did your diaper change. It was 98.6. Phew. Not sick! I did wear a mask this morning, just incase. I did not want to be the person to get you sick, because I would have been SO mad at myself.
Tomorrow we have a day off from appointments, and then on Wednesday, we have two appointments. The first one is at 9:30 with neurosurgery. The next one is at 5:20 with your pediatrician. After these appointments, we don't have another appointment until the 19th! Woo Hoo! Finally some quality time at home relaxing with you!!
We love you and love to see that you are starting to smile without it being gas related. It makes my heart melt. We are excited to see how much you weigh on Wednesday! You are getting to be a chunker!!

Sunday, July 10, 2016

Early Intervention Appointment - July 8th, 2016

This morning I woke up and still didn't feel well. As the day went on, I had the worst runny nose and continued to wash my hands after I blew my nose every single time. My hands are so dry and my nose is so raw! Another day that I do not get to take care of you.
Daddy had to go to work today since he stayed home with us yesterday. Luckily, grammy and poppy were here so that they could help take care of you. Grammy learned how to feed you so that daddy was able to leave the house. Of course I watched her like a hawk while she was feeding you because I didn't you to choke, but hopefully she realizes that I didn't mean to do it in a bad way. If that makes sense. I just am VERY overprotective with you since you are fragile. She ended up doing a good job and you didn't choke at all. I can't wait to feed you again!!
Daddy made sure to come home right before our appointment with Early Intervention to create our family plan. We weren't sure what to expect. I sat on the couch and looked at the milestones that you would be hitting if you were not a preemie (early intervention does not correct age) and put marks next to ones that we would like you to accomplish in the next 6 months. You will then be 10 months. I was hoping that this would help with our goals for you.
When the team arrived (PT, OT, DI, and the coordinator) we sat down at the kitchen table. We started with a family goal. Since we do not take you out in public yet or even out to friend's houses, we created a goal of getting you out of the house - slowly. Remember this is over 6 months! I'm sure a lot of people think I am crazy - and I don't care. Try having a preemie then come talk to me.
The next goal we started was PT. We said that we would like you to work towards crawling. The basically laughed at us and said that the PT that would be coming to our house would hate the PT that wrote the goal. I thought that was rude. No one has any idea what you are capable of right now. It is a GOAL. If we hit it, we hit it. If we don't, we don't but we are going to work towards it. I was a little upset after that goal - and I am sure everyone would understand why. After all, these are family goals, so if we want to see you crawl by 10 months, write it down and leave it at that.
The next goal was for OT. Since you HATE bath time (and we are awful parents and haven't bathed you since the 4th because I have been sick) they said that we should put you in a hospital basin and wash one part of your body at a time and then cover up that body part with a warm towel that just came out of the dryer. I think that is taking a few steps backward, but hey, we will try it. Hopefully you will enjoy bath time sooner than later.
After we created our goals, we talked about the services they recommended. They recommended PT and OT each once a week. They said that they can't really do much speech wise, so they don't think that it is necessary to have speech come at all. They said that the PT or OT can just watch to make sure everything is going well with speech, and if they think it is necessary to have a SLP, then we can have one down the road. The next step was to look at our schedules. Since daddy works every Tuesday and Thursday, we thought it would be best if they came on a Monday, Wednesday, or Friday. Apparently no one likes working on Friday, so no one is going to pick up a Friday (I wish I had a job where I didn't have to work on Friday if I didn't feel like it). An agency looks at the information and decides if they want the job. If not, another agency will pick it up. They said within two weeks we should get a call from the therapists or a scheduler. Then we can start the services which continue until they are not needed or until you are 3. After that, special health services will take over.
After that I started to ache all over. I was hoping that I didn't have the flu. I decided it would be best to sleep on the couch tonight. I put a heating pad on my back and I felt a little better. I actually slept through the night for the most part. I woke up when daddy came down to do your care, but other than that I slept. When I first woke up, I could breathe and didn't have to blow my nose a million times. However, when I got up, my nose was like a faucet. Ugh. I just want this sickness to be over so I can take care of you again! I am VERY lucky that you haven't caught my sickness yet. Hopefully it stays that way.
I am hoping tomorrow I feel better so that I can take care of you. Grammy and poppy were supposed to leave this morning, but I asked them to stay so that they could help out a bit more. We are lucky they agreed to stay one more day! We love you and love how much you are growing and changing!

Saturday, July 9, 2016

Ultrasound Appointment - July 7th, 2016

Yesterday I woke up with a sore throat - just on the right side. I tried a million different natural remedies to try and knock it out before it got any worse. I also tried Zicam, but I don't think I took it in time. This is not the time to get sick.
In the middle of the night I woke up and could barely even talk. My throat hurt SO bad. I woke up daddy and told him that he would have to take care of you because I didn't want to get you sick. We do not want you back in the hospital. He took care of you and your feedings throughout the night. I got up just to make sure he didn't need help with anything, but made sure not to touch you or come too close to you. When I woke up for the day, my throat didn't hurt, but the sickness had moved to my sinuses. I had tons of pressure, and a headache. Daddy, Grammy, and Poppy took care of you and I just tried to stay away from you.  I started blowing out green so I immediately went to urgent care. The doctor was so nice there. I told him that I thought I had a sinus infection and I just wanted to come quick because I didn't want to get you sick. He asked if I was breastfeeding and when I said that I was pumping, he said that he would prescribe me azithromycin but to wait 24 hours to see if I felt better before taking it. They don't want pregnant women or breastfeeding mothers to take medicine, but if I had to, he said I could. He even printed me off an info sheet about the medicine and breastfeeding. He told me that I needed to make sure to wash my hands after every time that I blew my nose or coughed or sneezed. So EVERY time that I blew my nose (which was VERY frequent), I washed my hands. I have NEVER washed my hands so much in my entire life. I really should have no more skin left on my hands because I have washed them SO much.
Since I was sick, I couldn't take you to your ultrasound appointment for your blood clot in your left leg. Daddy had to take you with Grammy. While they took you to your appointment, I took a nap. I didn't realize how long you guys had been gone until Poppy woke me up to tell me that you were home. Your appointment was at 2:30 and you had to be there by 2:15. You didn't get home until 4:15! Apparently they had a hard time finding the blood clot so a few different technicians had to try and then eventually the doctor had to come in a do it.
Not even an hour after you got home, the pediatrician had called and told me that your blood clot had stayed the same as it has been previously. Veins were closing in around it and the clot hasn't moved. He suggested to follow up with hematology in the future. He said it isn't necessary to follow up with them right now, but maybe in the future we could follow up with them and we could talk about doing something about it.
Tonight I do not feel so well. My nose is starting to run and I have a lot of pressure in my sinuses. I am hoping that I will be able to sleep well and I am hoping that it goes away fast! I miss cuddling you and taking care of you! I contemplated sleeping on the couch and I ended up just sleeping in the bed since I did last night. You sleep in your bouncer on daddy's side, so at least you aren't close to me.
Grammy and I went around and sanitized every single thing that I had touched today and sprayed Lysol everywhere. Still hoping and praying that you will not get sick!
We love you and continue to be amazed at everything you do. You are doing great!!!

Thursday, July 7, 2016

Speech Appointment - July 5th, 2016

Today we had our speech appointment and you weren't able to eat for an hour before your appointment. Your appointment was at 12:30 and your last feed was at 9 am. By the time we got to the room, you were screaming because you were so hungry. We had to undress you so that they could weigh you and they also did a length. You weigh 8 lb., 14 oz. You are 18 inches long. The nurse said that you would be seeing four different doctors. We would be seeing two for the first half of the appointment and then the other two the second half of the appointment. After that, they would all talk about what they thought the next steps would be, and then one of them would come back and talk to us.
The first half of the appointment we saw an OT and SLP. OT took a look at you and gave us an information packet on what you should be doing at your age. It also gave us some things that we can work on with you. The SLP watched us feed you. She listened to you as you drank, and asked us a bunch of questions. We told her how well you have been doing, and she said that we were doing a wonderful job with you. She recommended that we increase your bottle feed to 25 ml instead of 20 ml, and if you take all your feeds at 25 ml for four days, then we can go up to 30 ml which is 1 whole ounce! We are getting closer and closer every day! After they were finished, they told us that a dietician and attending would come talk with us next.
Again, the attending and dietician asked us a bunch of questions. We told the dietician that you seemed to be getting hungry an hour before your feeds. We told him that the pediatrician recommended that we go from 80 ml to 85 ml to 90 ml over a period of time. The dietician recommended that we even went up to 95 ml after four days of 90 ml. Other than that, he said that he was doing well. We spoke with the attending about your episode the other day. We told her that the pediatrician said that he didn't think that you needed to be on a stronger reflux med, but that he wanted us to make sure that speech thought the same. The attending asked us more questions and said that she wanted you on Prilosec and to stop the Zantac. She said that if we didn't see an improvement in a week to call. She also said that if you had another episode like you did before, to immediately call the pediatrician and possibly 911. Hopefully the Prilosec helps you and stops you from gagging.
After we spoke with both sets of specialists, we sat there and did the rest of your feed. The attending came back and went over all of the recommendations with us. She also said that she wanted to let us know that a discussion about having a g-tube was had. She said that it will be a long road with the NG tube and thought it would be best for you to have the g-tube instead. However, speech thought otherwise. Speech said that you were doing very well and didn't think that you would need the g-tube at all. Thank goodness. I am not even sure I would of wanted you to have the g-tube. It is another surgery, and there are chances of infection around the surgical site. I hope that you continue to do well with your feeds, and you keep advancing. Otherwise I think that at the next appointment they will talk about it again. That isn't something that we want to go through. You already have had enough going on, and will have more going on in the future.
They want to see you again in 4 weeks. Since they are so backed up, they have to schedule us for the first available, and then put us on a list for cancellation. Right now, your appointment is scheduled for September 13th.
We love you and are so happy with how well you are doing. You continue to amaze us every day. You are so strong!!

Please pray that Mason continues to advance with his feeds. We are praying that we will not have to go through another surgery for the g-tube. Also, please pray that the Prilosec helps his reflux better than the Zantac. Thank you for your continued prayers for Mason.

Wednesday, July 6, 2016

Breaking Records! - July 4th, 2016

Yesterday was a very busy day, but it was great to be with family. We haven't all been together since last summer, so it was definitely nice getting together and having all of our children together as well! Today was a very busy day as well, and I am completely exhausted. I haven't napped in two days!
This morning we woke up and started to get ready for the day. Me and you hung out for a bit so daddy could get together everything he needed to cook for the day. Family came over this afternoon and Carter and Cal played outside in the pool. You and Row hung out outside with everyone when you guys weren't napping.
We had a lot of good food and had a great time hanging out with everyone. You had taken 20 ml in your bottle every feed throughout the day which was a first! Just in time for your speech appointment tomorrow! At 9 pm, I was nervous that you were going to take less than 20 ml, but you did great! You finally took 100% of your feeds. So exciting!
Later we gave you a bath and again, we set another record. You didn't cry at all during bath time like you usually do! We weighed you on our scale and you weighed 8 lb, 15.25 oz, which daddy calls 9 pounds. We will see how much you weigh tomorrow at the doctors. Usually our scale is about 2 ounces less than the scale at the pediatricians.
Other than that we had a great day. You enjoyed your first big party, and had an amazing day. We are so happy that you are now taking all of your bottle feeds! You still need to take the tube feeds as well, but we are making progress. I can't wait to see what they say tomorrow at your appointment. We love you and are so happy with the way you are progressing!

Physical Therapy EI - July 2nd, 2016

Today your grammy and poppy are coming, and Uncle Ryan and Aunt Katrina with your cousins Cal and Row. Tomorrow Aunt Jess and Uncle Travis are coming with your cousin Carter and baby Laverne. All cousins get to be together!
Physical Therapy came this afternoon to assess you. She gave us a bunch of recommendations and went over everything you could do and what they were looking for. She said that she would write everything up and then send it to us when she is finished. She said that she would be on the phone while we have our meeting on Friday the 8th.
Later Uncle Ryan and Aunt Katrina came over and hang out for a while. It was nice catching up with them!
Tomorrow we are going to have everyone over and then have dinner at mom-mom and pop-pop's house. It is going to be a long day, but hopefully I make it through!
Hopefully you get to start your services for PT and OT the week after the 8th. You are starting to do some things on your own that you couldn't do before. You are starting to smile at people now, but it isn't all the time. You are definitely tracking things with your eyes now, which is great! The PT thought that was great! Keep growing and developing new skills! We love you!

Tuesday, July 5, 2016

Early Intervention - July 1st, 2016

This morning we had an appointment with the Coordinator of Early Intervention to talk about finances. Luckily, I am out of work, so with me being out of work and only daddy working, we have to pay $8.00 an hour per therapist. This is not to exceed $260 a month. When I go back to work, we have to pay $36.00 an hour per therapist. That is just crazy! I do not make that much money for it to jump that high! We have to pay it though, because we know you need it.
At the visit, she also asked us what our concerns were with you and told us a little bit about what would be going on at the appointment next Friday. We will have to let them know what we want you to do within the first six months and that is what we will work on. We will have different therapists come to the house - not the ones who came to assess you. We will all come up with a plan and then come up with a schedule for the therapists. More appointments!
We have an appointment tomorrow for PT to come from EI to assess you. She is coming at noon. That is the last person to come an assess you before our meeting next week. They will then determine what services we will need. I am assuming we will definitely need PT and OT, and I am sure they will recommend speech as well.
Other than that, nothing interesting happened today. You are doing so well at home! Luckily we haven't had another scare. I hope we never have another scare again. We love you so much!

Friday, July 1, 2016

Quite A Scare - June 30th, 2016

Since I wrote the blog early on the 29th, you missed out on some important information. Daddy sat in the chair that I usually feed you in at your 9 pm feed, and he tried feeding you! He did a great job. I was there to coach him along. The way we have to hold you was a little uncomfortable for him, so he kept switching you from his right side to his left side. You choked towards the end and he did exactly what he was supposed to do to get you to breathe again. Unfortunately, because he kept moving you from side to side and you are super sensitive with food in your belly, you threw it all back up. Daddy felt discouraged after that and said to himself "I should of stopped earlier" which is exactly what I would say to myself in the hospital when you had an episode while eating. He said he now knows how and why I blamed myself when you had the episodes during feeds. However, I reassured him that it was not his fault. He did great!
This morning daddy was working and I had just finished mixing your milk for the day. I decided to sit on the couch and research where to get the cheapest pampers diapers (since I am cheap as daddy tells me). You have been doing these things where you look like you are choking/gagging the last couple days which I am assuming is reflux. I was going to ask the pediatrician about it. As I was sitting on the couch and you were in your mamaroo, I noticed you choking so I ran over and tried grabbing you out of your seat (which didn't work so well so I had to quickly unbuckle you) and usually you are fine. Not this time. As I grabbed you to pick you up and put you over my shoulder to pat your back, you went limp and your eyes rolled to the back of your head. Daddy yelled down "are you ok?" and I yelled back "no" and he never came downstairs. After I told him what happened, he said that I should of told him "no, he isn't breathing!" but now he knows when I say no, I mean no. He said usually he comes right back so he figured we were okay. Anyway, I put you over my shoulder and began hitting (not patting) your back and you finally started breathing again. Talk about scary. And people wonder why I won't leave you yet.
Today was the pediatrician appointment. I had prepared a list of questions (like always) and couldn't wait to see how much weight you had gained (even though we have a scale at home, I wanted to see how they compared). We got into the room and weighed you first and you weighed 8 lb, 13.5 oz! I knew when I picked you up this morning that you felt heavier! Next, the doctor came in and took all my questions before looking at you. He said you were gaining weight nicely and that we are doing a great job with you! I asked him about upping your Zantac dose, but apparently you are already beyond the max dose that you should have at this point. He said that usually babies with reflux don't gain weight good and don't sleep well at night, and you are doing great with both. He said that at our speech appointment next week, we can ask them if they feel that you need to be put on prevacid or Prilosec, but he doesn't think so. I also told him about your episode this morning and he said that gagging/choking is because of reflux, and he isn't worried about what happened this morning as long as it doesn't keep happening. He also wasn't worried as much because the event lasted 5 seconds or less. Daddy asked if we could take away one of your feedings so that we could get more sleep and the pediatrician agreed with him and said that he is a big proponent of never waking a sleeping baby. We are also going to increase your feeds gradually to 90 ml to make up for the ml that will be cut out. We are to increase the feeds from 75 to 80 ml for 3 days, then to 85 for three days, and then to 90 ml. This is to make sure that you can handle the increased food. We are thinking you will be able to since you are waking up early to eat. He said to talk with speech and make sure that they are okay with the plan, and to give him a call just to update him on what we talked about at the speech appointment on the 5th. He also said that since you were gaining weight so well, we no longer needed to see you weekly, we could come every other week.
On our way home, daddy had to stop at Lowes. Since it was time for you to eat (I got smart and brought your feed this time), I started heating up your food - except the bottle warmer must have tripped the car adapter and it wouldn't heat up. Daddy was going to bring us home, but since it was literally right there, I told him to stop quick. As daddy was in Lowes, I noticed that you smelled so I knew you pooped. I looked at your leg and it was coming out of your onesie and your shorts and I immediately grabbed a burp cloth and paper towel that we had and placed it under you so that I could at least save the car seat. Daddy came out and all we did was laugh. Needless to say, when you got home, you got a nice bath. I weighed you after your bath and our scale at home said that you weighed 8 lb., 11.25 oz. So, the doctors scale and our scale are off just a little bit. Anyway, we got you in your jammies and then went down to get more things done.
Today was the first day that I cooked dinner. It was an easy dinner, and it turned out well. I was happy to have had the time to cook while daddy watched you.
Later, the girls came over to see you. They brought us a lot of food, which was very nice of them. We love when people bring food! They stayed for a while and then I had to do your 9 pm care. They left around 10 pm which I now know can never happen again because I am dying this am! It was great to have them over for a bit anyway.
Tomorrow we have the Early Intervention Coordinator coming over to speak about finances with us. Hopefully this doesn't cost us too much money, but of course we need it for you. Hopefully since I am out of work it will be a little cheaper. We also have an appointment tomorrow with PT for EI. Next week is our meeting with OT, PT, DI, and SLP to come up with a plan.
I received an email back from the pediatric dentist about your lip and tongue ties. He said that it definitely looks like we have a problem, and he will accommodate us most likely in a month. He said that they are very busy right now, but he will do his best to get us in. He is the only pediatric dentist that people recommend in Philly to get the lip and tongue ties in infants revised by laser.
We love you and are so happy that you are okay after giving us quite the scare. You have given me a few scares since you have been home, but they were all with eating. I am hoping revising the lip and tongue tie help out your reflux. The tube doesn't help with you reflux either. Keep growing and developing little man!!