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!!