Wednesday, June 29, 2016

First Day Without Daddy - June 29th, 2016

Today was our first day, just me and you. We got up a little earlier than usual and started our day. Good thing I got up early because I received a phone call at 8 from speech saying that they had a cancellation on July 26th, so they wanted to know if we wanted that appointment. I obviously took it, Any appointment closer is worth taking. About an hour later, she called again and said that she just had another cancellation for July 5th, and of course there was no questioning taking that appointment. Finally, we are getting somewhere! I had emailed the speech therapist last night asking if there was anything that we could do until August because I felt that we were not progressing at all and possibly taking steps backward since we wouldn't be seeing anyone until August. I wonder if she got that and notified the front desk to get us in sooner. Who knows. All I know is that we have our appointment next week!
Just as I was about to pump, the cleaners came. I had to hold off since there were three of them and they all tackled different rooms. It actually worked out perfectly for us because you got hungry earlier so you took your bottle in the living room (which the cleaners do last) and then when you finished your bottle we went upstairs to hang your feed (and they were finished in our room). They finished shortly after and I just hung out upstairs with you while I pumped.
I had to mix your milk for the rest of the day so I put you in the mamaroo which you did not like. I figured I would try the Moby Wrap and wear you. It was a sad attempt, but it worked and you passed right out. I was able to get a few things done like that. We did our next round of care and then I bagged milk. Mom-mom and pop-pop brought us a couple items we needed from the grocery and then later mom-mom stopped over to give you some new outfits since we are running low for 0-3 months.
After I did your next feed, I was too lazy to go upstairs and get your pulse ox, so I kind of napped. I kept waking up to make sure you were breathing. I will just have to nap later when daddy comes home.
We had a pretty uneventful day today without daddy. I don't really have anything else to report, other than we have the pediatrician tomorrow. I am going to see if they can do something with your Zantac since you are starting to cough again. Also, I am going to ask about upping your feeds, but he may say to wait until our speech appointment. We will see!
We love you and love how well you continue to grow and meet new milestones. You are now tracking things with your eyes which is great!!

Tuesday, June 28, 2016

Busy Day! - June 28th, 2016

This morning we got up and did our usual routine. I tried to get as many things done as I could because we had the eye doctor at 11:15. Needless to say, I didn't get as much stuff done as I wanted to, but knew I would be able to get it done when we came home. As I was thinking about our appointment, I wondered if we should bring you food since you eat at noon, but the appointment in myCHOP said it would only be 15 minutes so I opted not to.
As we were driving to the appointment, I said to daddy that I had no idea how it would only be 15 minutes because at the hospital they had to put eye drops in your eyes for a bit before the doctor came to look at your eyes. I said maybe since your eyes were getting better that they didn't have to do that anymore. I was wrong.
We got to the office and signed in. They called you back not too long after we checked in. The nurse said that she had to put eye drops in your eyes, come back in ten minutes, put another set in, and then come back to see if your eyes were dilated. If they were, then all was good, if not, they would have to put another set of eye drops in. Luckily after the second set, your eyes were ready to go. Of course you had to make it interesting and spit up all over me and yourself so in between we also had to change you.
The doctor came in and had me sit in the chair with you. We went over some of your history and then he looked at your eyes and said that they were still getting better. One of your eyes was even almost at stage one again. He said he didn't need to see you again for another two weeks. Daddy took you to the car as I checked out and made our next appointment. As I was trying to check out, there were no receptionists, and the line to check out was getting longer and longer. A lady came up and said to us "it looks like they all took lunch at the same time. Someone will be back soon." How in the world do you let everyone take lunch at the same time? Ugh.
We were late for your feed obviously by the time we got home, but you did take all 20 ml by mouth that you are allowed to and then we dropped the rest. Again, you like to make things interesting, so as we sat down to eat our lunch, you decided to rip your tube out. We had a hard time this time getting it back in, but eventually we did. You were then way off schedule so we decided to feed you a little later than 3 because we didn't want to over feed you.
We had bath time after I took a short nap. You didn't cry as much as you usually do during bath time, which is great. We weighed you and you weighed the same as before, 8 lb, 9.25 oz. I am hoping the pediatrician says that we can increase your feed since you are basically staying at the same weight now. We will see.
Matt and Courtney brought dinner over for us which was great because I was so behind with everything I had to get done. Courtney held you for a bit and then they left. It was nice to relax for a bit, but now I am up when I should be sleeping because I have so much to do still! It will all get done eventually.
Tomorrow is the only day this week that we do not have an appointment to go to. Yesterday was speech, today was ophthalmology, Thursday is pediatrician and Friday is EI. I am assuming we will have a PT assessment in there as well, or maybe that will be in the beginning of next week. Or maybe not since next week is 4th of July. Looking at our calendar for next month, right now we have one appointment per week, which is going to quickly change once we get a schedule for EI. I am assuming we will be back to 4 appointments each week.
Anyway, I need at least some sleep, so I am going to go for now. We love you so much and love spending so much time with you. We can't wait to have you awake more often so that we can do more with you!

Speech EI - June 27th, 2016

Early Intervention wanted Speech to assess you, so a lady came today for that. She came right before your feed so she could see exactly what we do. She basically had all the information she needed from our assessment last week, but she went over everything just to make sure the other specialists didn't leave anything out.
She had me do our usual routine which consists of changing your diaper, checking your pH level, heating up your milk, putting 20 ml in a bottle, sitting down to feed you for either 20 ml or 20 min, then putting you in your mamaroo to finish the rest by gravity. While we did this, she asked me a lot of questions and I told her about the swallow study at CHOP, why we feed you on your side, how long we pace, etc. I old her we didn't have a follow up appointment with the feeding team at CHOP until August 15th, so I felt like we were just sitting back getting nothing accomplished. She said that she would call again, especially since speech at CHOP said that they wanted to see us at the end of June. She said that she is unable to tell us what to do as far as how many ml to bottle feed, etc. She would just be there for support for whatever the feeding team told us to do. Since I have what we do now under control (she asked me why he didn't have a pulse ox if his heart rate drops during feeds and I told her I know all of his cues now), I really don't think we need her, especially if we have to pay to have her come out every week. We will see what happens when we have our meeting with all of the specialists and see what they recommend. Our next meeting is Friday with the coordinator to see how much we have to pay out of pocket. PT is also supposed to call this week and schedule an assessment with us.
Today was the first day that I was able to get up at 7 and stay up with you. I did have to take a nap, but I felt like I got a lot done earlier. We did some tummy time, which you weren't took interested in this morning. We looked at a toy on your activity gym (didn't want you to get overwhelmed), and when I noticed you were falling asleep, we put you in your lounger since you are so used to the mamaroo and bouncer.
Daddy cooked mom-mom, pop-pop and me a yummy dinner. You were awake basically from 12-3:30 and then from 6 to 9:30. That was the most we have seen you awake! You slept great last night (or maybe I slept great) but you usually do. Tomorrow you get to take a bath (your favorite - jk) and we will see how much you weigh. I think the pediatrician needs to up your milk intake by a little bit because you are getting hungry sooner and don't seem to be gaining weight as quickly as you did before. I have to call to make you an appointment this week.
Anyway, I will write tomorrow to let everyone know how you did with bath time, how much you weigh, and how your ophthalmology appointment goes. Then hopefully we can skip a day with appointments. We need at least one day free of appointments this week!
We love you so much and are so happy to be able to see you grow every day. You are growing out of your newborn outfits, and are now into 0-3 clothing. You are also growing out of your newborn diapers and into size 1! You are growing so fast!!!

Friday, June 24, 2016

Early Intervention - June 24th, 2016

Wednesday, Early Intervention came to evaluate you. We were already told that you would qualify because of your medical history. They told us that they do not correct for prematurity, so that means that they were testing you on a 3 month scale when you are technically only 3 weeks. You were average in the receptive category, low average in the personal/social category, and had a significant delay in the following: adaptive, communication, expressive, gross motor, fine motor, and cognitive. They kept telling us that you were not "behind," and that preemies usually catch up by the time they are 2 or 3. Sometimes it takes a bit longer to catch up, but eventually you would catch up. They said that they would expect what they saw for a newborn, which is basically what you are right now. In addition to OT, they recommended speech and PT. We have an appointment with speech on Monday to evaluate you. On July 1st, we have an appointment to go over the financial aspect of the therapies. They charge you based on your income, and told us that it might be cheaper through insurance to go through outpatient therapy. We still have to look into it, but the disadvantage of going through insurance is that we would have to travel to get the therapy, where early intervention comes to you. Other than that, they were here for two hours asking questions and looking at you. We will put together a plan once PT and speech come see you. The therapies will be at the same time every week.
Today we went to the pediatrician. We had an appointment for Monday, but we ended up going today. I called because you haven't went to the bathroom in 3 days (which when we went last week to the pediatrician he said was normal as long as your stool was soft) and I figured they would tell me to go get some prune juice. They did not - they said to come in today. We went and they said that there is nothing they can do for you right now, just that you would eventually go to the bathroom. They said they didn't want to give you any prune juice or any juice because your stool is still soft when you go. If we gave you juice, it could cause diarrhea and we don't want that. They recommended doing bicycle exercises, massaging your tummy, and putting a thermometer you know where. All of the things I was already doing previous to going to the doctor. Hopefully you will go soon.
When we got to the pediatrician, the secretary told us that we wouldn't have to go to the appointment on Monday, that we could get your 4 month shots today as well. You got 3 shots, and one oral vaccine. You cried for less than a minute, and then you were back to normal. They weighed you and got your length today. You weigh 8 lb., 9 oz. and you are 20 inches long. They plotted your growth and length on a chart, and gave us the papers so we could see how you are doing.
Other than that, we are hanging in there. People have given us meals which we are very appreciative for. The days go by so fast. I feel like we feed you and change you and then I get a few things done and it is time to do it all over again. Having meals prepared already is a big help. We are slowly having people come over, and yes we are scheduling when people come. We have a lot of appointments and having people over the same day that we have evaluations or appointments is a lot for me right now. I feel as if I will be overwhelmed if a lot of people come at the same time, so we limit the amount of people. I also need a nap each day, so people just dropping by doesn't work out that well unfortunately. I get a little moody if I don't get my nap in! People have been great about coming in and washing their hands without us even asking (we are so thankful for that!). We hope everyone understands where we are coming from!
I am exhausted right now so I am headed to bed. Again, I apologize for not writing every day and sometimes not even every other day. Once this schedule loosens up a bit I will get more sleep and will be able to write more!
We are proud of how well you are doing at home, Mason. Every time I look at you I am reminded how strong you are. We love you so much and even though we are exhausted some days, we wouldn't have it any other way!

Tuesday, June 21, 2016

Appointments, Appointments, Appointments! - June 21st, 2016

I feel like all I have been doing is answering phone calls and making appointments lately. Besides snuggling you of course! We are so lucky to have such great insurance. I have no idea where we would be if it wasn't for the good insurance - probably in a cardboard box. No but really, we are fortunate.
Tomorrow morning we have an appointment with Early Intervention Services at 9:30 am. They said that it would be a two hour appointment where they evaluate you and let us know exactly what they saw at the end of it. Usually that is when they let you know if you qualify for their services, but we already qualify because of your medical condition. I am definitely interested to see what they say tomorrow and interested to see what services we will need from them.
Another phone call I received today was from CHOP with their insurance coordinator. She told me that we would meet with the feeding team which consisted of four specialists. Our insurance covers everything and we just have to pay a co-pay (one for each of the specialists). After letting me know that information, she said that we should be getting a call within the next few days to schedule an appointment with the feeding team.
Tonight Aunt Karen and Uncle Dave came over to see you. They brought us some dinner and we were definitely thankful for that. Any time that can be freed up is great! They both were able to hold you and Uncle Dave finally broke his record - he said that every time he holds a baby they spit up on him. You did not spit up on him! You stayed awake from the time they got there during your 6 pm feed and your 9 pm feed. You did not get to bottle feed at 9 pm because you finally fell asleep just as I poured your bottle.
Other than that, we have been doing the same routine basically every day. I am trying to add in more tummy time and reading to you. After bath time three days a week, we go into your room and read a few books. I would like to do that every day, not just after a bath. I would also like to go for more walks, but that requires us to go early or late since it has been so hot out. I am confident we will be able to fit it all into our daily schedule one of these days!
We love you and love being able to watch you grow. We weighed you after your bath tonight and you weigh 8 lb, 3 oz! I can't believe how fast you are growing. It is crazy. You are slowly growing out of your newborn clothes. I don't want this to go so fast!! Slow down buddy!! At least we get to cherish every second of every day with you now that you are home. I love being your mommy and I know daddy loves being your daddy as well.

Sunday, June 19, 2016

A Couple Firsts - June 19th, 2016

I have been told by a few people that they miss the blog posts. I will try my best to do at least every other day, and if I have time, I will do every day. Tough with not a lot of time to sleep, since you eat every three hours with bottle feed and NG tube.
Today we let daddy sleep in for the 3, 6, and 9 am feeds. We were going to cook him some breakfast, but he wanted bagels instead and went to go grab some for me too. You were awake for a bit after your 6 am feed, so I didn't sleep past 5:30 am. We cuddled in bed for a bit until we finally got up a when daddy left.
Since you were awake and cranky after your 9 am feed, we decided to take you for your first walk in the stroller. It was a success. You fell right asleep. Daddy was afraid that you would stay awake because the road was bumpy, but you loved it. It was starting to get hot and we were losing the shade we were walking in, so we cut it short and came back home. We took you out of your car seat and put you in your mamaroo and you stayed sleeping. I would say that you liked it!
Today was daddy's first fathers day. We got him a shirt and a matching one for you as well. too bad it didn't make it here on time. Luckily, we still had a cute little onesie for you that said 'Happy First Fathers Day. I love you.'. We were even able to get a great picture of him holding you and you smiling at him while you were looking at him.
We gave you a bath tonight and you hated every second of it. I tried to hurry to get you all nice and warm. Grammy keeps bugging us about your weight, and we were able to get that quick. You weigh basically the same as you did earlier in the week, 7 lb., 13.5 oz. Not sure how our scale compares with the one at the doctors office, but I guess we will see on Monday the 27th when we go back to see the pediatrician.
Other than that, we had dinner tonight with mom-mom and pop-pop for fathers day. You were awake a lot today which was great! Yesterday when you were awake for a long period of time we did some tummy time and you did great. Even when I burp you, you try to pick and keep your head up for a bit. We keep practicing every day. You keep getting better and better. You are so strong, but then again we all knew that from the beginning.
Since it is late (or should I say early), mommy has to get some rest before getting up again in a little less than 2 hours with you. We let daddy sleep for the 3 am feed. Speaking of feeds, you have been doing great. Over the last 5 days, the most you have taken was 71% of the maximum feeds you are allowed, with a low of 41%. Sometimes you are just so tired you don't want anything to do with the bottle, and other times you are so hungry that we have to feed you earlier than your schedule. Hopefully soon the pediatrician says we can do our own schedule, but I am assuming that won't be until your NG tube is out.
Anyway, we love you and are so happy to have you home and to enjoy you every second of the day. We hope you stay strong and continue to do well at home for us. We love you buddy and are so proud of you!

Thursday, June 16, 2016

Loving Life - June 16th, 2016

A little late with this post today. Not too much changes from day to day, so I will probably start posting when something new happens so that I can enjoy more time with you.
I decided I would try you off of your monitor today for a while since I was awake with you and daddy and I think it is VERY annoying. You have done so good since you have been home, so we felt comfortable doing that. Besides, the doctor said she didn't think you needed it, but if it gave us peace of mind, we could have it. She did warn us how annoying it was. Anyway, you did great all day without it. The only time we really put it on now is when we are sleeping at the same time. I am still nervous about something happening in your sleep, although you haven't done anything in a long time like that. Better to be cautious.
You have been doing amazing with your bottle feeds. Amazing. One of the nurses and possibly the doctor said that we might get home and he might do better because we are both more comfortable. That is so true for me at least. In the hospital I was nervous to feed you all the time because I was afraid you were going to have an event and delay you coming home. Now, since you are home, we are more relaxed and I still watch for any cues that you may stop breathing. We use the monitor frequently for feeds as well, but I haven't been using them today. Out of your 8 feeds today, there were only two that you slept through, and the rest you took 16 ml or above. At midnight you took 16 ml, and all the others you took 20 ml. There was only two times that you coughed a little.
Daddy has been working all day and all night for us. He is working as I write this, and it is 1:15 am. He works so hard for us, especially because I am no longer getting paid to be home with you. He is definitely someone you will want to look up to as you grow up!
We had no appointments today, but our pediatrician called to see if we had any questions that we forgot to ask yesterday. I thought that was nice of him to call us and ask. He told us that if we ever have any questions, never to hesitate to contact them, no matter how small the issue. I did ask him if we should make an appointment next week or if it was okay waiting until Monday the 27th for our next appointment. He said that we can wait as long as we feel comfortable and you didn't need anything. We are going to ask when we go if we can increase your bottle feeds since you are doing so well. You have been showing cues a lot lately, even after we are finished with the 20 ml.
Life with you couldn't be more perfect. I enjoy ever single second of being with you. No matter how tired I get, I am the happiest mama out there. I love taking care of you. Since daddy works so hard for us, I let him sleep though some of the overnight feeds so that he can get his rest since he is still working. I told him I would never complain about having to take care of you. I also think I have a completely different perspective than most first time parents. We are truly blessed to be able to have you here today. We love you buddy. Keep doing well!

Wednesday, June 15, 2016

First Full Day Home - June 15th, 2016

Last night you pretty much slept through the night, and we had to wake you for your feeds. Most of them we just dropped your feed because you were sleeping. You slept in your bassinet for half the night, and then your bouncer for about 2 hours. I got up with you at 6 am and basically stayed awake the rest of the day (with the exception of a 20 minute nap).
We had a pediatrician appointment today. They let us go in the "back " door (the back door was actually in the front) so that we didn't have to go through a waiting room at all (sick or not sick), and they got us right into a room. The doctor was thorough and took all of the questions we had. He said that you will go weekly for now, because you are basically 2 weeks old. You will get your 4 month old shots on June 27th. Not looking forward to that - I actually have to be there this time! He gave us a lot of good information and looked you over and said you looked good. You have a "Stork bite" - apparently it is a birth mark on the back of your neck that usually goes away. You weigh 7 lb., 13 oz. You are a chunker!! I love it!
Our days consist of the same thing every three hours. We are starting to learn to do things more efficiently as we go. Today I made all your "bottles" until 9 am tomorrow. Tomorrow morning I will do the same thing instead of making them every 3 hours. The reason I say "bottles" is because you get 20 ml by bottle, and the rest by gravity. I just make 75 ml bottles to heat up and then pour the 20 ml from that into your bottle.
We are still trying to get a routine going, but we are making progress. It is hard when it basically takes both of us to do your feeds (although I did do everything at 3 am so daddy could sleep - remember he is still working even though he is home with us). We are great with helping one another. I always thought it would be super stressful and would cause us to fight but it actually not that way at all. Whatever he needs me to do, I do, and whatever I need him to do, he does. Teamwork! Since daddy is a night person, he lets me nap between your 9 and midnight feed, and since I am a morning person, I let him sleep through the 3 am feed. He still is nervous to bottle feed you, so as long as you continue to do well with me every feed, he is willing to start trying next week. He is also a pro at changing poopy diapers now! I knew as soon as we got home he would be a fantastic father (not to say he wasn't in the hospital - he was just super nervous)!
Uncle Ryan came to visit you today since he was in town. Daddy showed him how well he can change a diaper, and then we had some dinner and ice cream. In a few weeks all of your aunts, uncles, and cousins will be here to visit you! We can't wait!
I know this is an early post, but as I stated earlier, I nap a little later and I find it hard to write this when I wake up. I am sure you guys don't mind!
We love you so much and are having the best time finally being able to care for you at home. We are so blessed to have you come into our lives.

Tuesday, June 14, 2016

The BIG Day! - June 14th, 2016

Today you came home from the NICU after 111 days! I feel like it went by so fast, but yet some days went by so slow. I am not as nervous as I thought I would be, but maybe that is because we have a pulse ox home with us. We are so excited to have you home and to be able to take care of you all on our own!
We came to the hospital extra early this morning so that we could get you out earlier than usual. The doctor came to do your exam soon after we got there (I was brining your prescription downstairs when the doctor came) and then they rounded fairly shortly after that. The doctor asked the other doctor if he could break off from them quick to get our paperwork done and then he went off to his office. He brought back your discharge papers and said as soon as the orders appear in the computer, we can "break out". We got out of there earlier than expected.
We got everything together and put you in your car seat. We felt like we should of been running out of the NICU, partly because we felt like we were stealing you, and partly because we didn't want you to do anything to have to stay! You slept the whole time, even the whole car ride home! We hooked up your pulse ox in the car just to make sure you did well in your car seat. We know you passed the car seat test, but I just had to be sure!
We got you home and put you in your bassinet in the pack n play. We put some things away and then before we knew it, it was noon. Time for your care and feed! We did your diaper and fed you. You took 11 ml with no episodes. Same thing happened for 3 pm. We did some things in between, and the time flew. This feed you took 11 ml again, no episodes. At 6 pm, you took all 20 ml, again no episodes. Daddy changed your diaper at 3 and at 6! You didn't fall asleep between 6 and 9, so we didn't want to chance anything by bottle feeding you. We just dropped your feed and you went to sleep.
We gave you a bath at about 8:30. Your first bath at home in a bath tub! You don't really like baths too much, at least that was what the nurse told us. You did squirm a bit and cry some. Nothing too terrible!
During one of the feeds, someone knocked on our door and delivered a stork! We loved it! Mom-mom got it for us and we can't wait to take a picture with it!
I am now going to get as much sleep as I can, so I am going to cut this blog short. We are so excited to have you home. You are doing so good, and we can't wait to spend our first full day home with you tomorrow. Hopefully we will start to get into a good routine. Have sweet dreams tonight buddy! You are home!!!
Congratulations, NICU Grad!!!

Monday, June 13, 2016

Big Day Tomorrow! - June 13th, 2016

This morning when I called the nurse said you did great. She said you took 3 out of your 4 feeds (all 20 ml every time). She said that she gave you a bath and you hated every second of it. She said you were so cute and she was so excited for us that you were coming home soon.
when I got there, you were wide awake. The nurse said you were awake and content when she got there as well. I knew you wouldn't eat for 9 am. Just like I predicted, you fell asleep at 8:45 am. Luckily, the nurse already took your temp and changed you, so all I had to do was check your residual, test the Ph and drop your feed. I held you for awhile after that until the ophthalmologist came.
He came and did his thing real quick. He didn't say anything other than you would need a follow up in two weeks instead of one week. He said that you could have your follow up at Virtua so we didn't have to come all the way to CHOP. That is what we plan on doing.
The doctors rounded while I was holding you and went over a few things. They asked if I had your prescriptions and I told them about CVS calling and saying they don't make the concentration of the vitamin D that we want. They said that the CVS in the hospital does, so we can get it there. They told me about your blood work this am and everything looked good except your platelet count. Apparently it came back low. They said that usually your platelet count is high, and they said that your blood could of clotted in the tube when they collected it, so they were going to try again at 3 pm. If your platelet count stayed low, you would not be able to come home.
You slept until I had to wake you up at noon. I changed your diaper, took your temperature, checked your residual, checked the Ph, and then I got your bottle ready. I put you in the side lying position, and you fell asleep. I sat you up to wake you up a bit and you wanted nothing to do with the bottle. I tried for about 5-10 minutes to get you interested, but the only thing you were interested in was sleeping. I put you back in your crib so I could hook up your feed and dropped your whole feed again.
I went quick to grab a snack before we had our 1 pm appointment. As I was coming back up, I met our old neighbor on the west side. She said that she was happy but sad to see us back. I told her we were going home tomorrow and she asked if we were going back to Virtua, or home. She was excited for us. I asked her how her little one was and she said they have been telling her they could go home and then changing the date. I told her we knew how that was and we would be thinking of them. Daddy came down the stairs as we were chatting, and then we went to sit and eat a snack quick.
We went back in your room and the lady was already there waiting for us from the medical supply company. She told us what we would be getting and what insurance would cover each month. She went over some paperwork with us and told us what number to call if we needed more supplies. She asked if we would be okay with the 3 pm appointment earlier than 3 pm and we were happy about that. About 20 minutes later, the nurse came with the pulse ox and showed us how to use it. She set it all up and then she took it apart and had me do it. After that, our nurse got us a ton of medical supplies just incase we needed extra and just incase the company doesn't bring your supplies until later tomorrow. We packed up a lot of your things, and left for the day.
We came home and got everything else ready that we could think of. I planned on going to bed early, but I still have a few more things I need to do. We are having a friend paint "Always stay humble and kind" on your wall in your nursery. We love that song for you! Anyway, I should get going to get my last "good" nights rest for a bit! We are so excited and can't wait to have you home. We love you so much!!

I am going to continue to write this blog as Mason continues to grow. For the readers - I am going to try my best to write every night, but I am not sure how good it will work out. I will try my best as I want to document Mason's journey through life. I think it would be cool to document as much as I can, as we never remember our early years of life. Thanks for continuing to read Mason's journey!!

Sunday, June 12, 2016

Car Seat Test - June 12th, 2016

This morning I called to see how you did over night and they told me that you passed your car seat test! We hoped that you would since you sit in your bouncer a lot. You now weigh 7 lb., 8 oz. You had a cluster of events over night but she said it wasn't bad and you came right back on your own.
When we got there you were already getting your bottle (we got there later than usual) and you took all 20 ml. We then got your gravity feed together and did that. I held you for a bit and then the doctors rounded. Daddy and I switched when the doctors rounded because I had questions that I wanted to ask them and the questions were written down in my notebook. They wanted to change you to 75 ml so that it was easier for me to make your milk when we come home. I have to mix a little formula in to make sure that you keep gaining weight nicely. We also spoke about you coming home tomorrow - but we said we would rather take you home on Tuesday because we have appointments at 1 and 3 tomorrow and after all that we wouldn't want to sit in traffic to bring you home. So Tuesday it is!
Aunt Karen and Uncle Ron came to visit you today. You stayed awake for a good amount of time and finally fell asleep around 10:45. I knew you wouldn't be awake for your noon feed. I still had to change your NG tube before we were discharged, so I decided I would do that before your next feed. Around 11:45 I changed your NG tube and then we did your diaper, and I tried bottle feeding you. You were so tired, and you only took 1 ml. I didn't want to risk more, so we dropped the feed.
After that daddy held you for a little bit until we went to get a snack. When we came back we held you for a little and then we had to leave.
I called at 6:40 pm to see how you did for your 3 and 6 pm feeds. She said that you had n episodes and that you took the full 20 ml at 3 and then you took 13 ml at 6. She said you were getting tired and didn't want to chance that.
Everything is now ready for you to be discharged. We have your eye exam and our medical supply appointments tomorrow. Other than that, you are ready to come home! We can't wait. I know we will be walking zombie pretty soon, but it will all be worth it. We love you, little man. See you tomorrow!!

Saturday, June 11, 2016

Still Keeping Us on Our Toes! - June 11th, 2016

When I called the nurse this morning, she told me that you took your full feed at 9 pm without any episodes. At midnight and three am, you took only 10 ml because you lost interest. No episodes with the feeds, but you did have an episode where your heart rate dropped to 78 at 4 am while you were sleeping. After telling me this, she told me that someone wanted to speak with me about discharge. I waited on the phone and the resident picked up and said that they called in your prescriptions and just wanted to let me know. She also said that she saw you had an event while sleeping at 4 am so discharge may not be happening anymore. She said she would have to speak with the doctor about it, but she could go either way. And this is why I said I didn't want to get my hopes up (and after yesterday, my hopes were up).
At about 8:45 I started doing your care since you were awake. I changed your diaper and took your temp. The nurse asked me if I have given you your meds before and I said yes, so she left them all on the nurse's station for me. She got your bottle together for me and I started feeding you your bottle. You did a great job until the very end, where you dropped your heart rate to 62. I said to you "you really don't want to come home, do you!?" So I hung the rest of your feed and was upset about getting my hopes up, knowing that it was possible for this to happen. I held you for a bit and then the doctors rounded.
They asked how we were doing and I said that I didn't think you wanted to come home because you just dropped your heart rate to 62 while taking your last sip from the bottle. The doctor said not to get upset yet, to look at the bigger picture. She said that you haven't had any events while sleeping in a very long time, and the one you had at 4 am was self resolved. She said that we would have a pulse ox at home which would alert us if that happened, but she doesn't think it will. She said that we would continue to watch this weekend to see if it would happen again. As for your feed at 9 am, she said that yesterday when we increased your feed from 15 ml to 20 ml, we knew that we were pushing you, so there was a possibility of that happening. She said that as long as it didn't happen all the time that it would be fine. She said that we could also go back to the 15 ml, but she didn't think that we needed to since you did so well yesterday. She said that she thinks we are still good for discharge early this week, and we will just continue to watch to see how he does. She said that if we didn't feel comfortable leaving, that we could stay. She said she wouldn't let him leave if she was worried about anything. The nurse said to bring in the car seat, and I told the doctor that I still needed to do your NG tube. Other than that, we are pretty much set for discharge, as long as you decide that is what you want.
As I was sitting there, there was a "Code Blue" called for the next pod over. I prayed for the baby when that happened. They never called off the code, but I just assumed they forgot. I put you in your bouncer since you were still wide awake to see if you would sleep at all in there. You finally started to fall asleep around 10:15 - 10:30. I wasn't sure if you would wake up at all for your noon feed.
At noon, you were still sleeping. I woke you up to do your care, then I went to feed you and your eyes were closed. I told the nurse that I wasn't going to chance it at all and that I was just going to drop your feed. She agreed. As I was getting everything set up, I heard a very loud scream/cry in the other room. I looked at someone in my room and we looked confused. I then realized it was a mom crying and screaming. I looked at the nurses and the looks on their faces were very upsetting. There were curtains around the entrance of the pod, and from what I understand, the baby in that pod didn't make it. I had tears in my eyes and one of the nurses asked if I was okay. I was holding you at this point and I squeezed you a little tighter than usual. You just never know what could happen. I prayed and prayed for that baby and the family.
I held you until mom-mom came to get us. She brought the car seat for you so that you could take your test. The nurse was unsure of when the test would happen, and I would assume maybe tomorrow since the test expires if you don't go home when you are supposed to. I told them to make sure to call me when it happens and to let me know if you passed. We left shortly after I put you back in your bouncer. You were passed out. I hope you got some great sleep!
I called around 6:40 pm to see how you did the rest of the day. She said that for your 3 pm feed you had a cluster of events but you came back on your own. I asked her how much of the bottle you took before that happened and she said 3/4. She also said that you have been waking up about an hour earlier than your normal feed time, so your schedule is a little off today. Other than that she said that you were doing well.
I hope that you do well over night. I hope you get some good rest and have no episodes. Daddy and I are going to come tomorrow and I am going to change your NG tube. Hopefully everything goes well and you are still on schedule to come home. If not, its not the end of the world. It is best if you stay and get better rather than come home. We love you and can't wait to see you tomorrow!!

Friday, June 10, 2016

Woo Hoo! - June 10th, 2016

I called this morning to see how you did over night and she said that you did great. No events with any of your feeds. Phew. I was so happy to hear that. She said that you weigh 7 lb., 4 oz.
I got there this morning and the nurse you had yesterday was not there. Another nurse approached me and said that she would be your nurse until she left. She said she didn't know when she was leaving, but it was possible that she would leave and another nurse in your pod would take over. She also said that she heard that I do all of your care now. She definitely took that literally! Usually the nurses get your bottle together with your 15 ml for me and get out the supplies I need to hang the feed. They also check your residuals and Ph level. This nurse did none of the above. But I do like getting thrown into things because I learn much quicker. I took care of everything this am for you! No need for a nurse at all now! I did your diaper and temp, changed your pulse ox, got your bottle ready, fed you (you took all 15 ml with no events), checked your Ph level and residual, dropped your feed, disconnected your feed, and then held you for a while. I need to get my nursing degree stat!
The case manager came around and said that she contacted the doctors about the monitor and said that they were going to discuss it today. She said that if I found out before she did, to contact her so that she would know what was going on.
The doctors rounded and said how well you were doing. I didn't expect that. I thought that they would say something about yesterday for sure. They said that since you were doing so well, that we could up your PO feed to 20 ml. I was nervous about that, but it shows progress! I did make sure to mention the episode from yesterday just incase, and I told them I spoke with speech and we came up with a plan not to PO feed you if you stay awake between feeds. Other than that, they said that they were going to speak with the case manager about the monitor and everything else was staying the same.
I put you back in your crib again so that I could get everything together for your noon feed. I did the same thing that I did at 9 (all your care) and you took all 20 ml with no events. Phew. It is always a relief when we get through a feed with no events. I held you after I took care of everything until daddy came.
When we were in the car on the way home, I got a phone call from the case manager and she said that she just missed me. She said that she spoke with speech and they think it is best if you come home on a pulse ox, and not a monitor. She said it is less intrusive, and still gives us the info we need to pay attention to. She wasn't sure if it was covered by insurance yet, but she would let us know as soon as she could. She said the best medical company to go with now was an in house medical supply since you were getting the pulse ox. She said they would be contacting us later about everything.
When we got home the medical supply company called. They said that the pulse ox is covered 100% by insurance. They said that they would be by the bedside on Monday to show us how to use the pulse ox. We have an appointment at 3 pm to learn how to use the pulse ox, and we also have an appointment at 1 pm on how to do the gravity feeds (although I am already a pro - I guess the medial supply team has to go over it).
Another phone call that came in a little later was CVS. Why you may ask? The doctors called in your prescriptions!!! That means we are super close to having you home! Woo hoo! They said that they needed your information and they wanted to let us know that one of the three prescriptions are covered by insurance, and the others are over the counter. He said that the cost isn't too much for the other two medicines, but we will see what that means when I go to pick them up. They also said that two of them weren't in stock, so they will have them by Monday at 6 pm which should be fine.
I was very tired so I went in your room to sit in your glider for a few and I ended up falling asleep. I woke up in a panic hoping it wasn't 7 pm yet because I needed to see how you did today. Luckily, it was 6:52 pm and I called quickly. The receptionist said that it was close to 7 pm and she didn't think they would answer but she would try to put me through. I knew she didn't put me through or even try when I didn't hear the music in the background. I stayed on the phone because I know the call comes back to her if you wait long enough. She answered about 3 minutes later and said "Oh, you're still waiting? What's your name and care code?" Glad you asked me that the first time. Anyway, she put me through and the nurse answered. She said that you did great and you took 20 ml at 3 and 6 and had no episodes at all. Great job buddy! We are officially 24 hours with no episodes! Keep it up!
I can't wait to come see you tomorrow. This time I get to place your NG tube. The only other thing after that is your car seat test. I am assuming they will do that Sunday or Monday night. We are praying that you pass! We will see you tomorrow morning! Hope you have a great night!!!

Thursday, June 9, 2016

Heart Rate Drop - June 9th, 2016

Over night you had 2 events out of your three feedings you took. The other feed you were sleeping for, so they hung your feed for you. Other than that, she said that you stayed at the same weight and you were just relaxing. She said overall, you had a good night.
When I saw your nurse, she told me that she had heard from the night nurse that I am taking over everything. She told me that she would help me if I needed it, and if not, she would let me do my thing. I changed your diaper and took your temp while she heated up your feed. Right then, the doctors rounded.
The doctors said that they wanted to increase your feeds to 70 ml every 3 hours. Other than that, everything pretty much stayed the same. I asked about the car seat test and when we would need to bring that in, and they said usually they do it within 72 hours of discharge, because it expires. I said we would just bring it over the weekend and whenever it was time, they would have it there. They said that they have tons of emails about Mason and all of his appointments for follow ups. They are scheduling everything for me before we leave, which definitely helps me save a lot of time.
As the doctors were talking, I held you because you were screaming. You were so hungry! I fed you as soon as your milk warmed up and you took all 15 ml with no episodes. I got together the syringe and tube so that I could drop your feed. I held you for a while after that. You did not sleep between feeds again!
Close to noon you started crying because you were hungry so the nurse got your bottle in the warmer and then heated the rest of the milk for you while I took your temp and changed your diaper. I started feeding you and you were doing so well. I took the bottle out of your mouth and you dropped your heart rate to 46. You started coming back up on your own, but the nurse told me to move you upright from side lying and to tap your back. You were done after that. I was so upset because you never have episodes for me so I felt like it was completely my fault. I went to lunch after I hung your feed and cried. I cried because I thought it was my fault (and still think so) and because I feel as if you are never going to be able to come home. Usually if stim is required - it is at least another 5 days before you are allowed to go home. Although that still puts us at the timeframe that you are supposed to come home, it still kills me knowing that you did that while I was feeding you.
The phone rang and the nurse gave it to me. It was the case manager and she asked about the monitor. I said that the doctors said that they didn't think you needed it, but they said you could go home on one if it made us feed more comfortable. She said that the insurance wouldn't cover it if you didn't need it, so she had to make sure that the doctors had a code for insurance. She said that if insurance didn't cover it, it would cost 300-400 dollars a month to rent. I said no thanks to that. Although I really want it - I am not going to pay that much a month. I just hope the Owlet works as good as they say! She said that she would call the doctors and let me know, but she never got back to me. I am hoping she gets back to me tomorrow. This is cutting it too close for me. I need to know these things ahead of time!
I went back to the room and held you for a bit longer until daddy came. We had to watch two videos before being discharged. One was shaken baby, and the other was back sleeping. We signed off on papers that we watched them. One less thing to worry about. The other thing that we have to do before going home is to insert your NG tube by ourselves. I gave daddy the option of going first. I am always there so it doesn't really matter when I do it. He decided to go first and he did a great job. He said it is a lot different than inserting it on the mannequin (that's what I am nervous about). You screamed and cried the whole time but hopefully we won't have to do it often. I have to do it before we leave, and then after that, it can stay in for one month. Unless of course you decided to pull it out. Which is very likely. Daddy and I worked together after I fed you the bottle and we got your feed together to hang and we also gave you your prune juice. I feel like we can work as a team to do this without a nurse coming to the house.
We left shortly after that and I cried on the way home. Just very upset about the episode today. This is why we need a monitor. We will see what they have to say tomorrow.
I called at 6:40 like usual and she said that not much has changed sine we left. She said that you were pretty tired for your 6 pm feed, so you only took 5 ml and then went to sleep. At least you had no episodes. I am hoping the same is true tonight. She said that she would be back tomorrow, so I am happy about that. She was very nice.
I love you so much and everyone is praying that you learn to eat. One day you will. Until then, take your time and we will work with you as much as we have to. See you in the morning buddy!

Wednesday, June 8, 2016

Taking Over - June 8th, 2016

When I called this morning to see how you did over night she said that she fed you at 9 pm and you had one event after taking all 15 ml. She said that for the other feeds you were sleeping, so she just did gravity feeds. She said that you gained weight and you are 7 lb, 2 oz. She also said that one of the nurses we had over on team 5 came to see me but I had just left. Some of the nurses I am going to miss so much. She is one of them.
When I got there you were waking up so instead of getting breakfast like I usually do, I got you out of your crib and held you. I held you for about 25 minutes until it was time to start your diaper and temperature, and then your feed. You did very well for me with your bottle feed. You took all 15 ml with no episode. I held you for a while after your feed.
The doctors actually rounded earlier today and they were starting to go over more information with me about discharge. They asked again if I have changed your NG tube and I haven't yet. I told her that daddy and I discussed going home on a monitor and that we felt more comfortable with one for a while. She said that the case manager would come and talk to me about it today, along with the medical supplies. She said that "it is always good to have a plan" so she said that we are going to aim to come home at the beginning of next week depending on how you do. She wants you to have your eye exam on Monday first, just incase anything changed. She said she would hate for you to have to come back just because of your eyes. However, the doctors keep saying they are getting better, so I am assuming all will be good to go.
For your noon feed, I did your diaper and took your temp again. I gave you your bottle and you took about half of it before falling asleep. We let you sleep and dropped the rest of your feed. You had no episodes while I was feeding you. I went to go eat some lunch and then came back and held you for a bit.
When I came back, the case manager came to speak with me. She gave us two options of medical supply companies, and then said the supplies we would be getting delivered every month. She said that if we needed something else or run out of something, just to call the company and let them know. A representative will be coming before we leave to make sure that we have everything and to go over how to use the monitor at home. She asked if I have changed your NG tube and when I said no, she said to let the nurses know and I would step in. She said that both daddy and I would have to change your NG tube before we were discharged. She also told me to take over the feeds - that means testing your NG to see if it is still in your belly by checking the Ph levels, flushing it, feeding you, and giving you your meds. She said that if I felt comfortable by Monday, I would be good to go. If not, she would get us a home care nurse to help out. The next feed at 3 I would be taking over.
At 3 pm, I did your care again and speech came to see how you were doing. I told her that you have been great and she knocked on wood. She listened to you swallow as I fed you. You took all 15 ml and again, had no episodes. After speaking with speech about follow up and our plan for now, I had to learn how to hook up the rest of your feed, and how to give you your prune juice. The nurse showed me where everything was, showed me how to get everything hooked up, and then what to do when you were finished. We then gave you your prune juice and a flush after that. I would now be doing this every time that I am there for a feeding. I already feel comfortable doing it, and I have only tried doing it once. I think it is because I have been watching it for a little over 3 months. I know what I am doing now.
I left around 4. I was so happy that you didn't have any episodes all day. Maybe this new plan was finally working. I called back at 6:45 pm to see how your 6 pm care and feed went and she said that you took all 15 ml with no episodes. She said that since I left, you have just been chillin'. Hopefully we can make it 24 hours or more with no episodes.
I am excited yet cautious about you coming home. I don't want to get my hopes up like I did last time. It was very hard when you didn't come home. However, since you are doing better this time, I know we are getting close. The nurse told me that we would also have to watch two videos that takes about 20 minutes before being discharged as well. She said that we can watch them anytime between now and next week. She recommends changing your NG tube the same day as well.
We love you and hope you come home soon. We cleaned up our room for you and rearranged some things so it is easier to take care of you. We can't wait to have you here with us. No more leaving you every night. I will see you in the morning. I hope you do well tonight buddy. Sweet dreams!

Tuesday, June 7, 2016

New Plan - June 7th, 2016

I forgot to mention is yesterday's post that you had an eye exam. The ophthalmologist said that you look good and he expects the abnormal cells to go away on their own. He is going to check you again on Monday.
This morning I called the night nurse to see how you were doing and she said that she didn't bottle feed you for the last 3 feeds. I was so frustrated. I didn't ask why - I was going to do that when I got to the hospital. Daddy and I talked about it, and we were going to see if it would be beneficial for me to stay there for 24 hours to see if you had any episodes. We just need more consistency.
This morning I was hoping I would come in and the nurse from yesterday wasn't there. Luckily, she wasn't. We had another nurse that you haven't had before, but I liked her. I did your 9 am care and fed you as well. You took 15 ml (the max you are allowed to take now) with no episodes. I held you for a while and then put you in your bouncer.
The doctors rounded late again. They said that you need to have less events between feeds before going home. I asked when the last time you had one was and she said yesterday. I asked what time and she said 1 pm. Of course. We were at our CPR training and apparently your heart rate dropped in the 50's. However, you didn't desat. The doctor questioned if it was even real. I asked when the last time before that was and she looked and said a long time ago. I asked her again about the events while PO feeding and said since it is so inconsistent, if I should stay for 24 hours and feed you. She said if the goal was to go home on full PO feeds, she would say yes. However, the goal is to just work on the skills at home and NG feed as well, so there is no need. She said that you can have events while feeding, but just not ones that drop into the 50's/60's. She asked if I talked to the case manager about medical supplies yet and I said that someone mentioned it two weeks ago but no one ever came around. She said that was because she needs to tell them when to come and she only contacts them when patients are close to going home. I told her that I got a letter in the mail about an appointment in October for Neonatology and thought that it was late. She said that it was a little late and said that she would fix it. She asked if we would like to go home on a monitor. She said that we don't need it, but she thought that since we have been in the NICU so long that maybe we would feel more comfortable with it. She said she didn't need an answer right then, and to think about it. She said to set our alarms for every ten minutes tonight and that is what it is like coming home on a monitor. I told her we took our CPR and NG Tube training and she asked if we practiced bedside yet. We have not. We have to put your NG tube in once before we leave to make sure that we know what we are doing. She asked if you had your hearing test yet and I told her you did. She said a couple other things that had to be done before going home as well.
By the time they left, we had about 10 minutes until your next set of care. You stayed awake from 9 to 11:35. There was no way you were going to wake up for your feed at noon. Since I had just changed your diaper at about 11:15, they said I didn't have to do that again and that I could leave you sleeping and they would just drop your feed. I had to go eat lunch because I was shaking.
As I am sitting there eating lunch, my phone started ringing. It was the hospital calling. My heart dropped. I answered the phone and it was speech. She started off by saying "nothing is wrong" and that she just wanted to get my permission to feed you since I am always there. I told her I would be right up.
When I got there, she said she just wanted to see how you were doing and said she would rather me feed you since I do so well with it. You had woken up right after I left and so she wanted us to at least try to bottle feed. I did and she listened to you. She explained that we are going to be feeding you a max of 15 ml and for a max of 20 minutes to strengthen your skills. I asked her if we went home how we would know to allow you to do more and she said that we would speak with the team about 2 weeks after we are discharged and we would look at how much you are working and breathing. We would also see if you were having any events. I wanted to ask about your lip and tongue ties, but I forgot. Anyway, I fed you and you had no episodes again and took all 15 ml.
I held you for awhile after that feed and then put you in your bouncer. At 3 pm, I did your care and fed you again. You did well and took 15 ml. After I had already finished and pulled the bottle out of your mouth, your heart rate dropped to 93. That is one that they usually don't document since it wasn't too low and it was very quick.
As I was pumping, the nurse came over and said that case management had called and asked if I would be there tomorrow. Of course I would. They are coming tomorrow to speak with me about my insurance and the medical supply company. Looks like the doctor contacted case management!
A little later the FLC came and told me that she rescheduled the neonatology appointment for you and asked if the date was okay. It was. She left and then came back to let me know that she scheduled the nutritionist appointment as well and asked if the time was okay.
For your 6 pm care, I did your diaper and temp. I fed you and you took all 15 ml and had no events. Now people can see why I may get frustrated when I am told that you have events with every feed. You don't for me, so I don't see why you do for everyone else. Just frustrating!
I stayed until about 7:15 pm. I am so happy that I got to do all your day feeds today. I am hoping tomorrow they see that and realize why I get upset about the inconsistency.
I will be there in the morning to see you. I am looking forward to speaking with case management and getting that out of the way. Daddy and I love you and hope you do well tonight!

Monday, June 6, 2016

Not a Fan of Your Nurse - June 6th, 2016

When I called this morning to see how you did last night, she said that you had an event with each feed. This is the same nurse that had you a few nights ago that didn't go to well. I was happy to come see you so that I could feed you - event free.
When daddy and I got there, the nurse had already did your care. Everyone reading this knows how I feel about that. I didn't let it get to me and I was ready to feed you. The nurse said that she didn't feel comfortable with me feeding you since you had so many events over night. I told her that when I feed you, you do not have events, so it would be fine. She called the team and they were busy and said to just drop the feed thinking the events were unrelated to the feeds over night. This was the very first time that she had you, and she kept telling me all these things about you. I told her that what she was telling me doesn't happen all the time, and she just kept acting like things did. I am with you day in and day out, and she is talking like she knows you better than I do. I don't think so.  She was saying how tachypneic you are when you eat and after you eat and I was telling her that you weren't usually tachypneic after you eat. She said that you were probably aspirating and she didn't feel comfortable with you bottle feeding because of that.
Daddy and I had the CPR and NG tube training today, and the doctors hadn't rounded yet when it was 11:00 am. I wanted to make sure that we had time to eat, and that I could still feed you at noon. They finally rounded at about 11:40. They said that they put in the orders for your swallow study so that would most likely be done today or tomorrow. They told the nurse that they wanted us to continue to bottle feed you because that was the skill that we are trying to work on. The nurse said that since you continue to have events she didn't think that we should do that but she would try it and stop if anything happened. I told the doctors that you don't have events when I feed you and they said it was probably because they were the morning feeds which really doesn't make too much sense. You are sometimes awake and sometimes sleepy. It varies every day. The nurse kept saying how you have events with every feed. I bit my tongue but wanted to say a lot of things. They didn't change anything and just wanted to see what the swallow study showed to make a plan. Your noon feed was dropped (gravity feed) because your swallow study was scheduled for 2:30 and they didn't want you to get tired.
We left for the CPR training at 12:45 and then your swallow study was scheduled. Our NG tube training was scheduled from 2 - 3:30 and daddy and I wanted to be there so we changed the NG tube training to 4:30. The CPR training was good. Scary, but good. I feel like after practicing, it is something that I could do. I am not sure under all the stress I would be under it would be god, but I feel better that I know what I am supposed to do just incase something happens. Which I hope nothing ever happens where I need to use that.
We left CPR training and we went to your swallow study with you. When we got to the room, the speech pathologist was there. She asked me if I wanted to feed you during the study. She warned me that I would be feeding you in a weird position and that she would do it if I didn't feel comfortable doing it. After she said that, I told her that I wanted her to do it, but then I changed my mind and I fed you. I did exactly what they told me to do, and they said that you were not aspirating. They said that the milk came close to your airway, but never entered your airway. They tried thickened liquids as well and said that there wasn't really a change with that so we could stay with the regular feeds that you have been getting. They did all of that when you were laying on your side. They wanted to try you sitting up to see how you were doing as well. They didn't take too much time on that because we were already passed the time limit that they usually do. The SLP said that she would talk to the team to come up with a plan. We won't know that until the morning.
After the swallow study we went back to your room to get some things together before we went to our next class. I saw the nurses you had over the weekend and they asked how you were doing. I told them that you had events with every feed over night and they seemed surprised and were upset because they said you were doing so well. I wish my nurse was there for that one. She seems to think the worst. Anyway, they were happy that you were not aspirating and said that they hope your light bulb goes off! Before we left for class, I told the nurse that when I have been calling at 6:40 pm, they haven't been answering so the nurses are calling me now if I don't get through. She took my number down and said it is on her list of things to do. I'm still waiting for that call.
The NG tube training went well. It was just daddy and me and we had to practice on a doll. We will also have to practice bedside before you go home so that they know we can do it. I am assuming it is way easier on a doll since the doll doesn't move when we put the tube in. We were given a cheat sheet, a DVD, and detailed instructions just incase we forget how to change the tube out.
We left after the class to go to dinner with friends since it was mommy's 30th. I will be back in the morning to see how you are and to see what the plan is. I really hope that nurse isn't back tomorrow. I did all I could not to say anything to her today.
You hit the 7 lb mark! Keep growing buddy! We love you so much and hope you get better soon.

Sunday, June 5, 2016

Swallow Study - June 5th, 2016

This morning I called to see how the rest of your night/morning went and she said it went much better than last night when I called. She said that you 35 ml, then 40 ml, and then 25 ml. For the 25 ml feeding, you had one quick episode, and she said that she could tell you were getting tired.
This morning when I came and fed you at 9 you took 20 ml with no episodes. I feel like I am extra careful at feeding you to make sure that you have no episodes.When the nurses feed you (I don't want to say they aren't as careful) I feel like they may have different techniques. My goal (and speech said this is her goal as well) is to get you to stop having episodes, not to eat as much as you can.
The doctors rounded and said that if you didn't go to the bathroom to give you another suppository, but she felt that we shouldn't give it to you if we didn't have to. She doesn't want your body depending on them. We decided to hold off on it and wait to see if you went during the day, and if you didn't, night shift would give you one. Luckily you went between your noon and 3 pm care. Other than that, she said that she thought it would be a good idea to rule out anything by doing the swallow study. I asked her how long it would take once they put in orders and she said that it should be done tomorrow. She said it is possible it would be Tuesday if they were backed up from the weekend. From there, we would come up with a plan of what to do next. She told me that if we saw something wrong, not to look at it as a step back, but look at it as a chance for you to grow and mature.
For your noon feed you were doing very good. Of course I had to tell one of the nurses this morning that you usually have no episodes for me, and only for the nurses. So when I was feeding you at noon you were very squirmy (I am assuming you were working on a poop) and bearing down. I kept trying to pull the bottle out when I saw you bearing down because I know that can cause episodes. Towards the end of our 20 minutes, you took a few sucks and then started to bear down and then you coughed and threw everything you just drank up. Because of that, you had an episode. The nurse said it was just because you were throwing up. But, of course I had to say something to a nurse this morning about you not having episodes for me. Lesson learned.
Daddy came for a bit to see you and you kept focusing on him. I love seeing you look at him and I can't wait to see you guys together when you come home. You guys are going to have an amazing bond.
The nurses called me to let me know how you did at 3 and 6 pm. I usually call but for some reason I haven't been getting through so they said they would call me. I really liked what they said. They said that at 3 you took 20 ml with no episodes and at 6 they could tell you were really tired after they changed your diaper so they jut dropped it by gravity. I don't need nurses pushing you when you are tired to see if you will take anything. I need them to realize that you are tired, and that it wouldn't be good to feed you because if you are tired, you are more likely to have an episode.
Tomorrow we have our CPR and NG tube training class. I am a little nervous about it, but I know we can do it. It is amazing what you will do when it comes to your own child. I would never of imagined me being able to stick a tube down someone's nose into their belly. You do what you have to do when it is your child. I would do anything for you. Daddy is definitely nervous, but I know he will do fine.
Daddy and I will be there all day with you tomorrow. We hope that you get to have the swallow study done so we can see what is going on and so that we can come up with a plan. It has been a very emotional weekend for me knowing that we have been through so much and we still may have weeks ahead of us depending on what the swallow study shows. I know it is best for you to stay in the hospital until you are better, but it's just hard not having you at home. We love you and we hope you do great tonight. We will see you in the morning buddy!!

Please pray that the swallow study goes well and that we can come up with a new plan that helps Mason get better. Thank you so much for all of your continued support and prayers!

Saturday, June 4, 2016

Inconsistency - June 4th, 2016

When I called this morning to see how you did, she said that you had just taken 45 ml's for your 6 am feed. I said to her "did you just say 45 ml's??" and she said yes! You took for her 40, 0, 12, and 45 ml's. I was so happy when I heard those numbers. Even if you had a 0 in there, you need some rest which is expected. You only had one episode which she said was quick.
For your 9 am care, daddy and I took your temp and changed your diaper. When I fed you, you took 40 ml's. I was shocked. You never take that much from me! The best part was that you had no episodes. I feel like you are doing a great job now, and maybe the "lightbulb" went off.
The doctors rounded and said that they weren't going to make any changes, and they just wanted you to work on your PO feeds. The doctor today said she wasn't concerned about the events you are having since they are only with feeds.
You did not sleep one bit between your 9 am and noon feed. I knew that your noon feed wasn't going to go very well since you didn't get any rest in between. You definitely did better than I thought, and you took 15 ml. You fell right to sleep after that feed. Mom-mom, pop-pop, Aunt Judy, and Uncle Bill came to visit you. You didn't wake up at all for them, but at least they were able to see how much you have grown!
We had to leave shortly after because we had Cole's graduation party. I called while we were there to check on you and no one answered again. I hate when they do that! I called again when I got home and they finally answered. She said that you had events with your feeds and only took about 10-12 each feed since 3 pm. This frustrates me because you do so well, and then all of a sudden start having events. I am not sure if it is just that each nurse has her own way of feeding you and some don't work so well, or what it is. You haven't been having events for me so it is hard for me to hear when you do. We are going to speak with the doctors on Monday to see what we can do since you are not having events for me and for some nurses, but having events every feed for others. I was so happy this morning and afternoon with how well you were doing, and now I am upset and frustrated because it seems like you aren't doing well again and I am not sure why. I wish I could just stay for every feed and see how you did. Which I still might do soon if this keeps happening. Ugh.
We love you and hope you do better tonight. I hope it isn't just the nurse that isn't able to read your cues. I would hate for this to happen for every feed over night. The SLP did say you were a difficult baby to feed. Hopefully you get better at showing the nurses what you want, and hopefully the nurses get better at paying attention to you so you have no more episodes. I will admit, it is definitely difficult to read your cues and to pay careful attention so events are prevented. Anyway, we will see you in the morning and I will be there to do your 9 and noon feeds and to speak with the doctors about what they think we should do. Miss you buddy.

Friday, June 3, 2016

100 Days in the NICU - June 3rd, 2016

Today was rough. Not rough for you, but for me. Today marks 100 days in the NICU. It got me thinking. That is 100 days where I had to leave you every night (There were a few days I slept by your isolette). It had me thinking that every single day when I leave, you lay there without anyone snuggling you. I cried on the way home from the hospital today - all the way home. I hate knowing that you aren't getting all the cuddles that you should be getting at this age. I do my best when I am there - but I am not there 24/7 and I wish I was. I can't wait for you to come home. I am not going to want to put you down at all. I don't care how many people say "you shouldn't hold him all the time - he is going to get used to that and not want you to put him down." Some people may say that I will regret doing that - but the only time I will regret is the time that I didn't get to cuddle you, change you, feed you, and just be with you while you were in the hospital all this time. You are only this little for a short while and I am going to make the most of it since I have lost so much of that time. And I continue to lose it every single day you don't come home. I will never get this time back.
I called this morning before I came to see you and no one answered again. When I got there the nurse told me that you had 5 total events over night after not having events for 24 hours. You did so well with me and the day nurse. I wanted to see how you did at 9 am to see if maybe it was just the night nurse, or if you really weren't doing well with your feeds. Speech came to see you for your 9 am feed as well. You get really excited to eat (which is adorable by the way) but it doesn't help you because you don't want to stop sucking. She said that since you were trying to continue sucking, to give you one or two extra sucks to see if you would pace yourself better. You didn't, but you also didn't have any events when I fed you. I asked what we could do since you weren't really getting the hang of eating like she wanted you to do. She said that it is really hard when so many different people are feeding you. She said that since I am the main person that will be feeding you at home, she doesn't think it makes sense for you to stay in the hospital if you aren't having events for me. She said that it isn't possible to have one person feed you every feed (unless I stay there 24/7) and that you are a difficult baby to feed. You don't show any cues that you need a break - you like to keep going and going and so anyone who is new to feeding you doesn't know to stop. She said that if you are still having events on Monday, that we will schedule a swallow study. She doesn't think it is going to show anything, but she wants to do it just incase there is something they are missing.
The doctors rounded and I told them about possibly scheduling the swallow study. They seemed to think that was a good idea. They also asked if we tried feeding you every other feed and I told them that we spoke about that yesterday but we wanted to see if giving you more breaks would help first. Since you haven't went to the bathroom in a couple days, they upped your prune juice intake to twice a day. Since you were straining, they gave you glycerin, and you went to the bathroom twice since then. Hopefully you feel much better now! The doctor said she wanted to see if that would help with your feeds as well since you weren't straining anymore. Maybe less episodes. Other than that, nothing else was changing.
I held you from your 9 am feed until 11:30 when they gave you the glycerin. Then I fed you at noon. You had a really quick episode that the nurse didn't bother documenting because she didn't see it and because your heart rate didn't drop much. Those are the types of events you can still have and come home.
I had to pump and then eat lunch, but after that I held you until daddy came to get me. That is when the crying started. I miss you as soon as I leave. I don't want to leave. I only want to leave with you.
I can't wait to see you in the morning and hear how you did. I am hoping you have less events (none are preferred) and I am hoping you sleep well. We love you so much. I can't wait until you come home and see how much better it is at home.

Thursday, June 2, 2016

Less Episodes - June 2nd, 2016

You did not have any episodes over night. When I fed you this morning for your 9 am feed, you did not have any episodes either. You took 23 ml for me. The nurse told me that you now weigh 6 lb, 9 oz.
The doctors rounded shortly after I fed you. They said that they wanted to increase your feeds to 65 ml every 3 hours to make up for the decrease in calories (yesterday they changed you from 24 cal to 22 cal). They are going to continue to watch you to make sure that you are not straining when trying to go to the bathroom, and if you are, they are going to give you more prune juice. Other than that, there wasn't any other changes.
For your noon feed, speech came to take a listen to you. You are getting out of breath when you take a few sucks from the bottle. After you suck a few times, you have to catch your breath. She said that eventually you will get the hang of it, but it may take some maturing before that happens. She said that she wanted to listen the whole time that I fed you because she wanted to make sure she wasn't missing anything. After listening to you, she said she still does not feel the need for a swallow study. She thinks you will get the hang of it eventually, it just may take a bit. I asked her if we should try to bottle feed every other feed since you are getting tired, but she said she doesn't think so. She said that she thinks what we need to do is stop you once you start having to catch your breath, take a one minute break, and then see if you want to eat more. If you do, great, and if you don't, that is good as well. The goal is to stop you from having episodes, not having you eat a lot. Obviously we want you to eat more and more, but our number one goal is to stop the episodes from happening.
I held you for a while and you were sound asleep. Unfortunately I had to put you back in your crib so I could go home. I can't wait until I don't have to leave you at night. It is definitely rough, even after so long.
I called the hospital a few times after I left and they didn't answer. I finally got a hold of them just now. For your 3 pm feed you took 25 ml, at 6 pm you tool 38 ml, and at 9 pm you took 22 ml. You had no events for your 3 and 6 pm feeds, but at 9 you had two events that you quickly resolved on your own. Your heart rate dropped to 73 and 77. I am assuming after hearing how much you took at your 3 and 6 pm feeds that you were tired for your 9 pm feed. Hopefully you don't have anymore events over night.
We love you and hope you have a good night. We are proud of you every day and we hope you learn how to eat better soon. We are here for you no matter how long it takes! Can't wait to see you in the morning!

Wednesday, June 1, 2016

A Few Changes - June 1st, 2016

This morning when I came, I did your care and then fed you. You did great with no episodes and took 35 ml. You were wide awake and didn't tire out until about 30 min in. I was so proud of you! You fell back to sleep soon after that and then you had a hearing test. (You passed!)
As the lady was doing your hearing test, the doctors came for rounds. I stated again that you only were going poop once a day as opposed to every diaper and she said that they would try prune juice and changing your fortifier from 24 calories to 22 calories. Since they don't usually like more than one change a day, they asked which one I would rather have them do, but I didn't have a preference. In the end, they decided to do both changes. There was still enough milk made with the 24 calories for tonight, so instead of wasting it, they were going to use that and still give the prune juice. As soon as the 24 calorie milk ran out, they would change to 22 calorie. I asked about PT coming since I haven't seen them yet and they said that they would put in an order for that. They asked if I had chosen a place for medical supplies and I said that I had no idea that I had to do that. They said that the social worker was the one who calls insurance and makes sure that the place we choose is covered, and said they also help pick a place close to our home. They asked about our NG tube and CPR classes and I said that they were supposed to be today, but since Mason wasn't coming home this week, we changed it to Monday. You also started your iron today.
The nurse had me give you your vitamin D and iron today by mouth since that is what I would be doing at home. I also need to give you Zantac, but she said she was going to put that through your tube for now. You didn't spit any out which was good!
For your noon care, I did your care and then fed you again. I could tell you were a little tired, but still interested in the bottle. You took 24 ml, but also had one episode where your heart rate dropped to 67. You came back up on your own. That is the reason you are not ready to come home yet. The doctor said you can have heart rate drops and still come home, but you could not have drops that low.
Speech wanted to come for your three o'clock feed. Unfortunately, you were way too tired to even think about having a bottle at all. Speech told me to do whatever I would do (feed you or not feed you) and I wouldn't feed you since you wouldn't even open your eyes. No need to push you and you to have episodes. She said that she would come back tomorrow to see you.
We dropped your feed and then PT came. She said that we should start practicing tummy time on empty stomach (you puke when you get moved around after feedings) and to sit you up so you can practice holding your head up. She asked what I was worried about from a developmental standpoint, and I said everything. She asked me to be more specific and I said....everything. I am worried that you will be behind in everything. Who knows what will happen. I am definitely happy that you are getting all of the services now, but still nervous that something may be wrong in the future. You are already enrolled in EIS and a NICU follow-up program at CHOP. I'm sure you will do great since you have tons of specialists following you from birth to at least 3. Still, as a parent, I am nervous (and so is daddy)!I am sure that is expected.
We left after that. Yes, daddy came for your 3 pm feed and of course you wouldn't eat. That makes 3 out of the 4 times he came to see you for a feed , you refused. There is always tomorrow!
I called to see how you did for your 6 pm feed, but no one answered when I called. I will call again later tonight to see how you are doing. I can't wait to be able to just look over and know that you are doing well.
We love you and hope you do great with your feeds tonight and tomorrow morning. Pace yourself and you will do great. See you in the morning!!
Please pray that Mason's reflux related heart rate drops stop soon so that he can feel better. The sooner that is resolved, the sooner he gets to come home!