Saturday, April 30, 2016

More Firsts - April 30th, 2016

This morning we came for a bit because mommy wanted to be there for rounds. We noticed that you had no cannula anymore! You are now breathing on your own!!! We came at 9 am and stayed until 10:30 am and the doctors still didn't come around at all so we left to go meet grammy, poppy, great aunt Wanda and Great-Grandma. We had some lunch and then headed up to see you.
When we were there in the morning, I told your nurse to call me after the doctors rounded. I got a phone call just as lunch was over and your nurse said that you were doing great. She said that they were going to start to bottle feed and you would go in a crib today! So exciting!
When we got there with the family, they all took turns coming in to see you. At your 3 pm feed, daddy started out trying to bottle feed you, but the nurse told him that it was easier for you if he held you a certain way and he did not feel comfortable holding you like that. I did, so I fed you the bottle. You did such a good job, only dropping your heart rate twice! You gave us a big burp at the end as well. Since we were still there at your 6 pm feeding, I fed you with the bottle again, and you didn't have any drops in heart rate. You had the whole bottle both times (only 7 ml's) and they said as long as you were doing well with the bottle feedings, they would keep increasing the amount in the bottle. You still got fed through your feeding tube the other 33 ml's.
As we were getting ready to leave, I was upset because they still didn't bring the crib to your room. The nurse said she would go and ask what was going on, and about 5 minutes later, your crib came! I was able to transfer you over to your first crib from your isolette. You seemed like you were so big in your isolette, and now you seem so small in your crib.
After I had changed your diaper after feeding you the first time tonight, you went to the bathroom again. I changed that diaper, and then you went again. So I changed your diaper for a third time, hoping that was it. About 10 minutes later, it needed to be changed again! Gotta get it all out!
I just spoke with the nurse from tonight to see how you were doing and she said that while she was feeding you with the bottle you got a little overwhelmed. She said she put 10 ml's in the bottle since you did so well earlier and you weren't coordinating your sucking, breathing, and swallowing as well so she stopped after 5 ml's. Other than that she said you were doing well!
Such a big day today - we are so happy you are doing so well! You may have some troubles bottle feeding, but that is to be expected. Today is only your first day and you did so well! We hope you have a great night in your crib and you stay nice and warm. Pretty soon you will be home to cuddle with me and daddy! We love you buddy!!!

Friday, April 29, 2016

Such A Great Day! - April 29th, 2016

I got to the hospital very early this morning, so I decided to go have some breakfast and get some coffee before having to go back to wait for the doctors to round.
When I got back up to the room, the doctors came fairly quickly. She said that she wanted to start bottle feeding (PO) and the nutritionist that was with her said that she wanted to increase your feeds to 40 ml. They didn't want to do both at the same time, so they decided to increase your feeds and worry about the bottle feeds this weekend. You are now getting dressed and bundled in the isolette and on air mode. They keep weaning down the temp to see if you can hold your body temperature. If you get down between 26 and 27 degrees Celsius, and you can still keep your body temperature with a blanket, then you can come out into a crib. The doctor said she wanted to take you off of your breathing support, but the other doctor said that it would be easiest to wean you from 1 to .5 just incase they have to turn it up a little bit. They are starting to gravity feed again instead of giving your feeds over 30 minutes.
After this weekend, it seems like the only thing that we are going to have to work on is eating. They said that they give a bottle before breastfeeding because it is easier to see how much milk you are getting. Hopefully even with the bottle feeds, we will be able to breastfeed. They say that preemies have a harder time eating because it is hard to suck, swallow, and breathe at the same time. Hopefully you don't have any issues!
Today was a very emotional day for me. Having so much good news at once was overwhelming, just thinking about how far we have come. I cried happy tears quite a few times because it seems like it won't be too long before you can come home. It will be a few more weeks, but we also have been in the NICU for 9 weeks. Just thinking about where we started is crazy. Such a crazy journey that I wouldn't wish upon anyone, but we are so happy to have been able to meet you so early and watch how much you have grown.
You are making amazing progress. We love you so much and can't wait to bring you home. Mommy is not going to want to put you down. A lot of parents don't like to change diapers and deal with babies crying, but I can't wait to change each and every diaper, and be able to hold you and comfort you when you cry. Maybe it will be short lived, but I have learned to cherish each and every thing that I can do for you while in the NICU. I hope it continues on when you come home. You are our little hero.

Thursday, April 28, 2016

Happy 9 Weeks! - April 28th, 2016

This morning when the doctors rounded, they weaned you on the cannula to 1. You are almost off of breathing support. It is scary but exciting at the same time! They said you now have to focus on growing and eating. Daddy called while the doctors were there to clarify a few things. They gave you the lovenox for as long as they wanted to and since it isn't doing anything, they don't want to risk any bleeding. They said that it would resolve on its own.
I spoke with the neurosurgeon today and I asked him if he felt comfortable with you leaving and going to virtua. He said that you looked great and that he thought it was a good idea. He clarified for me that you would see him 1 month after discharge - not 1 month after the surgery.
As for nursing, we tried again today and you did even better than yesterday. You stayed on longer today and were more awake. I adjusted my pumping schedule so that I would empty before your feedings so we could practice more than once a day. Hopefully once you are able to really eat, you will be a pro!
Uncle Ryan was able to come see you today for a while. Pretty soon you will be able to meet all of your cousins!
When I called tonight she said that you were sleeping and that she did your care at 9. She said that you now weigh 4 lb., 8 oz. I think you only need one more day of weight gain and then we can start you on air mode in your isolette. One step closer to coming out of your isolette and into a crib!
These posts keep getting shorter and shorter because you are doing so well. There isn't too much to talk about anymore! Just waiting on our transfer to Virtua - hopefully within the next week!
We love you and are so happy with your progress. Keep it up! See you in the morning!!

Wednesday, April 27, 2016

Another First! - April 27th, 2016

This morning the doctor weaned you down to 2 on the high flow. You did very well throughout the day on it. No issues at all! They stopped the lovenox again because they said they were close to the amount of days they wanted to treat you for and you are going back to Virtua and there is too much of a risk if you were to continue it there. Apparently the Anti-10a levels that are checked at CHOP come back in 3 hours and at Virtua they come back in 3 days. If anything was wrong with the dose, we wouldn't know for three days which is too risky. They upped your feeds to 37 ml every 3 hours. I asked about when I could start nursing because they told me 35-36 weeks for boys and this week is 35 weeks. She said I could start today as long as I emptied before trying. They call it non-nutritive sucking. It is hard for a preemie to suck, breathe, and swallow, so we have to take it one step at a time.
When you go over to Virtua, you will have an ophthalmologist appointment there next week (if you are there by next week), and you will also be looked at by the doctors there for your shunt. They will then contact the neurosurgeon at CHOP to make sure it is how he wants it. They are starting your vaccines as well since you are 2 months old. I asked them if they did vaccines on a corrected age or actual, and they said your actual age.
After lunch the nurse got a phone call that you were being transferred to Virtua...TODAY. I was shocked, the nurse was shocked, the FLC (frontline clinician) was shocked... the doctor had called over there but apparently there are no beds as of today. When there is a bed available, we will be getting transferred.
When your feeding was starting, we tried nursing. The LC came and helped and made sure to tell me that you may not latch, may just lick, or you may latch. It took a little bit but you did latch! I wasn't expecting that at all! Now we just have to keep practicing and you'll be eating in no time! Right now you are just getting my milk through your tube, and I have to empty before we "nurse." Once we get the sucking part down, then we can try to get a little milk. So as of right now, when you are getting your feeds, we practice. Daddy said "so you're tricking him!?" That made me laugh!
I just got off the phone with the nurse for tonight and you gained some weight! You are up to 4 lb., 7 oz! That is grammy's birthday gift from you.. she loves when you gain weight! Other than that she said that you are doing great!
We love you and can't wait until you are closer to home! Keep it up, you are doing amazing!

Tuesday, April 26, 2016

Possible transfer - April 26th, 2016

No episodes last night or today. Definitely back to where we were (minus gaining weight 5 consecutive days) before surgery. Keep on going buddy!
This morning during rounds they were talking about getting a consult with urology. They said that they were going to wean your high flow down to 2.5 from 3 tomorrow. They are probably going to increase your feeds tomorrow as well. Other than that, they said that you look really good!
You had your eye exam today so the nurse had to put a series of drops into your eyes. You hated every second of it! The ophthalmologist came and he looked at your eyes and said that you had stage 2 zone 2. Two weeks ago it was stage 1 zone 2. He said that most cases resolve on their own for stages 1 and 2. He said that he would check you again next week.
Urology came to check out your hypospadias. They said that you were too little to do anything now, but they were going to fix your hydrocele, hypospadias, and do your circumcision when you are 6 months corrected. They asked if we wanted to have it done there, and we said yes.
Hematology came around just to make sure that I knew you were on the lovenox and to see if I had any questions. I said that the doctor told me you would be on it for 4-6 weeks and they said that they are aiming more for 4 weeks, not 6. That is a good thing because I am not sure if you were to come home before 6 weeks that I would be able to give you the shot!
I just got off the phone with the nurse for tonight and she said that you now weigh 4 lb. 5 oz. She said that last night you weighed 4 lb. 7 oz. but when I spoke with the nurse last night she said she weighed you again after that and your weight was the same as the previous night so I am not sure why she recorded the higher weight. Anyway, she said that you have been pretty quiet and she did your care and you are now back to sleep.  
There is a possibility that once neuro clears you and all your doctors are in agreement that you are good, that you will go back to Virtua. I asked about the timeframe and the doctor said that it could be in two days. I really don't think it will be that soon. She said she needed to call my insurance to make sure that the transfer back to Virtua was covered, and that Virtua would give you the lovenox. She never came back to tell me what she found out, but I will find out tomorrow.
We love you and are so happy you are doing so well. We can't wait until you are home! Until then, keep gaining that weight!!

Monday, April 25, 2016

Nice Surprise for Mommy Today! - April 25th, 2016

You did not have any events over night and did very well for the nurse. You had your ultrasound this morning at about 5 am and luckily, nothing has changed. I don't know what I would have done if something changed and it was because of the mistake that was made.
The PA came around before rounds to let me know that the ultrasound showed no changes. She said that they would be back around for rounds. I waited, and waited until I couldn't wait any longer to eat lunch so the nurse told me that she would call me if they came around. She didn't call, and so I ate my lunch and came back when I was finished. They rounded about 15 minutes later. They changed your feeds to 24 calories instead of 22 calories (you were on 24 calories before surgery, so they just slowly reintroduced everything). They weaned your rate down to 3 on high flow. Not much longer and you will be breathing on your own! The PA said that she was going to speak with hematology to see if they wanted to start you on lovenox again. Later, the PA came back and said that they wanted you on the lovenox for 4-6 weeks. They are going to start this tonight at 11 pm. This means if you come home before that, mommy and daddy will have to give you the shot....yikes!
After I ate and after your care, I wanted to do kangaroo with you since we haven't had a chance to kangaroo in a while. I held you for about 2 hours. Towards the end I felt something really hot and then wet... you peed on me! Your diaper had a little space and you happened to pee right out of it all over my belly and shorts, but I am sure that will not be the last time. It is so weird how when it is your child you don't even care. I just had the nurse put a pad between us and I kept holding you.
I asked the nurse when we could start dressing you again and she said when you get back to the weight before surgery, or if you gain weight over 5 days (whichever comes first) then we can start dressing you and weaning the air temp in your isolette. Then we can get you into a crib. (You weighed 4 lb, 6 oz before surgery and you weigh 4 lb, 4 oz today.)
You are going to have your eye exam tomorrow - you hate the eye exams. Hopefully nothing changed from the last exam two weeks ago. Other than that, I don't think there is anything else going on tomorrow which is good because the eye exam is enough for you.
We love you and we hope you have a great night tonight. Mommy will see you in the morning. Keep fighting buddy! You are doing great!

Sunday, April 24, 2016

Back to Normal - April 24th, 2016

We came to visit for a little bit this morning and you looked SO good! No more swelling, and just all around good. You look like you are back to where you were before the surgery! We sat there for a bit and I watched you and all of a sudden, your thumb went into your mouth and you started sucking! Daddy and I immediately grabbed our phones and started taking pictures and videos of you.
We left and came back later with mom-mom and pop-pop. Daddy held you for a while and you were staring at him and loving every second of being with him. Daddy loved it as well. After mommy was finished getting you some milk, I held you. I can't wait until you come home and I can hold you all the time when you aren't connected to any wires!
The PA stopped by to see if we had any questions or anything. You will have your ultrasound of your leg tomorrow and sometime this week you will have your eye exam again. The nurse said to the PA that they will be able to wean you quickly off of the oxygen. The PA said we will take it a day at a time. The nurse was right - you hate those prongs in your nose and half the time I look at you, they aren't even in your nose! But I also agree with the PA - lets take our time so we don't take anymore steps backward.
I just got off the phone with the nurse for tonight. She said she didn't do your care yet, but you have been very quiet. You are still on your full feeds at 35 ml every 3 hours. You are on the cannula like you were before surgery. The only thing we need now is 5 consecutive days of weight gain so we can put clothes on you again and wean down the temp in your isolette. Then we can get you out of there and into a crib!
We love you and I can't wait to see you in the morning! I will be there bright and early in the morning. Stay strong - you are doing great!

Saturday, April 23, 2016

Our First and Hopefully Last Big Incident - April 23rd, 2016

Last night I never got a phone call from the nurse so I figured that you did not get a blood transfusion. I planned on calling at 10:30, but figured I would just wait and call since you didn't get the blood transfusion. Well boy was I wrong.
When I woke up at 5 am, I decided I would call since we wouldn't be coming to see you until around noon. One of the nurses we knew answered, and she updated me on what was going on with you. You now weigh 4 lb, 13 oz which is great! She said that you had a cluster of events but it was around the time you were eating. She said you got a blood transfusion last night - um excuse me, what? I never got a phone call, but okay. I asked her where the IV was and she said I think the right leg. Phew. She went to check and it was in your left leg. Your left leg. Where no blood pressures are supposed to be taken, no IV's, blood draws, nothing. She said that she would call the PA and let her know. I get a call about 2 minutes later from the PA saying "I heard that you were upset about the IV in his left leg." Um yeah, there is a sign on his bed that says "No LLE BP's or Sticks" in pretty big letters. I heard the nurse yesterday tell the nurse that stuck you say "no sticks or blood pressures in his left leg". I said to the PA that I have had to tell nurses about 4 times now to stop what they were about to do because they were about to do it in your left leg. She said that she was sorry, but the IV looked fine so she was going to keep it in. At that point daddy had woken up and said they better pull it. So I told her we needed the IV pulled immediately. She said she wasn't going to, and that it looked fine. About 5 minutes later my phone rang again, and it was the nurse telling me that she pulled the IV and put it in your right leg. She said we would only need the IV for another 24 hours for your antibiotics. She also made a cuff for your left leg that says NO STICKS on it.
When we came in, we had a really good nurse that I know will take care of you the best. We haven't had her in a while, but I feel very comfortable with her taking care of you. She said that she would call the PA right away to speak with us. When the PA came (not the one from this morning that told us she was going to keep it in), she said "all I can do is say I am so sorry this happened." I told her that I had to stop nurses from doing this for a couple weeks now and she said that she put it in your chart, it was already in huge letters on your isolette, and now you have a cuff. She said that she wrote what happened up, and I told her that the nurse never called when she asked me if I wanted her to call me if you were to get blood. She said she would add that in. I asked what could happen to your clot since you already got the blood transfusion and she said that the clot could have grown. She doesn't think it did because she could still feel your pulse and you had good cap refills. However, your foot is swollen again. You are going to get an ultrasound on Monday, unless something causes them to do it earlier.
We stayed for a little bit after that. You look much better than the last couple days. You face isn't as swollen and you are more alert. You don't look pale anymore. You were moving all around.
I don't even know what to say about today. I just hope nothing happened to your blood clot. I love you and daddy loves you and we will see you in the morning. I feel like I need to stay at the hospital so nothing bad happens to you. I hope you have a good night, and a good morning. Stay strong for us!!

Friday, April 22, 2016

Much Better Day - April 22nd, 2016

This morning you peed a ton which was great. Through your diaper and onto your bedding. You also finally pooped! Woo hoo! Your blood gas was good so they decided they were going to extubate you today. The tube was really bothering you and it just didn't look comfortable at all. You were very swollen from all the IV fluids which was definitely hard to see as well, but since we have been through this before, I do know that it goes away.
When the doctors did rounds today they said that they were going to extubate you after rounds. They knew how excited I was for this to happen. They said they were going to put you on the ram cannula to see how you would do and then wean you again from that to the cannula. I was so excited! They also talked about upping your feeds to 35 ml instead of 33 ml which is great as well. Back on track we go!
After rounds, they came by and took the tube out. You looked SO much more comfortable. It wasn't breaking my heart every time I looked at you now. You were doing fine breathing on the ram cannula. You were still having some brady's, but you would come right back. They eventually increased your caffeine to see if that would do the trick. If not, they were going to give you blood because you usually do really well after getting blood.
The doctor came back around and said that you were on the OR schedule for Monday - um what!? He said not to worry, that he called and made sure to take you off of the schedule. He just wanted me to be aware just incase anesthesia doesn't get word quick enough and comes to ask me to sign a consent form. This was supposed to be for his hernia - which he wouldn't have done until right before going home. We are not close to going home yet.
Later the hernia surgeon came around to look at you. He thinks it seems to be the hydrocele they are feeling. He said even if it is a hernia, it is a small one and he wants to put that off since it isn't causing any issues. One less surgery I have to deal with in the near future.
The neurosurgeon came by as well. He showed me how to feel if your fontanelle was full. He also told me that if we ever notice any fluid around the shunt to come in to get you checked out. He said sometimes it is nothing, but other times the shunt may have failed.
I had to get blood work done today so that I could donate breast milk to CHOP for those mommies out there who aren't fortunate enough to either make milk, or make enough milk for their babies. Since I make twice as much as I need, I wanted to help other mommies out. It feels good knowing I will be helping other mommies and babies!
I think today was the first day this week after your surgery that I actually felt good enough to leave and go home for the rest of the day. The nurse asked if I wanted her to call me if you were to get a blood transfusion and I told her I would love for her to call. I need to know where that IV would be going. They are going to try to hold off until your IV fluids are finished so that they can use that same IV, but in case of emergency, they will need another IV - which I am hoping isn't going to happen. I haven't received a phone call yet, so hopefully you didn't need anything yet.
We love you and will be up to see you at some point tomorrow. I am going to call to see how you are in the middle of the night and I hope that you are doing much better than the last couple days. You are quite the fighter! Keep on fighting - you are my hero!

Thursday, April 21, 2016

Happy 8 Weeks! - April 21st, 2016

In the middle of the night I went to see how you were. She said that you had a cluster of events. She also said that your urine output was way up and that you were doing better with your feeds - only getting a residual of 1 ml.
I had to be out of the sleep room by 8, so I came back to your room at 8. I am glad I got there when I did because they had a hot pack on your left leg - and I know what that means. They were going to put an IV in your left leg when there is a sign that says "No LLE BP's or Sticks." I told them that you could not have an IV in that leg and so they took off the hot pack. The put an IV in your arm instead. 
The doctor came and said that since you were having events he wanted another X-Ray to look at your belly and the placement of the ventilator tube. I asked him if you could be having events simply because you do not like the ventilator tube and he said yes but they didn't want to take it out and have to put it back in if you didn't do well without it. 
The doctors came and did rounds about 15 minutes later. You had a residual of 4 ml - the full feed they gave you three hours ago. The doctor said to throw it out and to skip this feeding and to feed you again at noon. The doctor said that it is most likely from the morphine. The  X-Ray showed that your tube was still low, so they needed to fix that again today. The doctor said that he hopes to have the tube out tomorrow or the next day.
After fixing the ventilator tube, they got another X-Ray to see if the placement was better. They noticed that your lungs weren't expanding as much as they should, so they upped your pressure from 6 to 7. The placement of the tube was better, but it could be moved up more. They decided since you weren't having many events that they were going to leave you alone.
At 3 they did your care again. You do not like getting touched! Any time they do your care, you have some episodes. You only had a residual of 1 ml, so they are going to continue your feeds. You are peeing a lot now, so that is great. However, I noticed that you were pale again. Since your nurses were not here yesterday, I went to go get a nurse that was so that she could give me her opinion. She said that you looked pale as well, so I told the doctor. He said that he didn't think your hemoglobin would drop that quick in two days, but he wanted to get a CBC on you just incase. Your hemangioma had a black line in it, so I told him about that. He said that some develop purple spots throughout, but he would keep an eye on it.
I needed to get out for a bit because I hate seeing you with the tube down your throat and being so pale. It is hard to see you like that. I went to go get my nails done with mom-mom, and then I was going to call and see how you were doing before the nurses changed shifts.
At 6:45 I spoke with your nurse and she said that the CBC came back and they decided they were going to do another blood transfusion. I assumed your hemoglobin did go down if they were going to transfuse you. 
Daddy and I came back to see you around 7:30. You needed another IV in order to get the blood transfusion and the NICU team tried but couldn't get one in. The IV team came (one person) and tried to get an IV in your arm and in your leg and couldn't get either. She asked if she could put an IV in your left leg and the nurse said no. The person from the IV team asked how long you have had the clot because she said she could put an IV in if it was over 11 days old. I did not feel comfortable with that. She said that she could put one in your head as well, which I did not feel comfortable with either. She told the nurse to call the NICU team to see if they could get approval for putting one in your left leg. The doctor came to your bedside and said that your hemoglobin isn't super low so they still had some time - we could wait until morning until someone else could try to get the IV in, or we could try again tonight. I told her that I did not feel comfortable with putting an IV in your head or your left leg and she said she agreed and wanted to wait until the morning.
Daddy and I stayed until 10:15 and then headed home. They were going to get a blood gas tonight to see if they could wean your RR rate down again (it was at 20) and then once you were at 15 they were going to see how you were doing and then if you did well on 15, they were going to extubate you. Hopefully when I get there in the morning they have already extubated you, and if not, I hope they do soon after I get there. I know you hate that tube so much and it kills me to see you with it in. 
We love you so much and hope you have a good night. We know you want that tube out soon. (Just a hint - the doctor said if you were to get it out somehow, they wouldn't put it back in! Yank it out buddy!!!) I will see you in the morning!!

Wednesday, April 20, 2016

Scary Morning/Rough Day - April 20th, 2016

When we got to the hospital this morning, you were doing well. On track to be extubated and start feeds. You did look swollen, but that is to be expected since you just had surgery yesterday.
The nurse said that you were doing fine, and that they most likely would wean your ventilator rate down again. You were at 15 for your RR when I got there. You still needed a bladder scan because you weren't peeing much. When the doctors came around they said they wanted to catheterize you. Once they took a look at you and listened to you they changed their minds because your belly felt soft and you had good bowel sounds. I asked why you wouldn't be peeing and they said it could be the anesthesia and possibly the morphine. They also said they wanted to start your feeds very small at 4 ml's. Once you get extubated you can go on full feeds. They said that you would just be getting my breast milk right now with no fortifier. You would continue on just my breast milk until you got to full feeds and then they would put you on a different fortifier since you are growing so well. They also said that they wanted to wean your RR to 10. If you did well on that you would get pressurized air and they would take it from there.
When it was 10 o'clock, grammy and poppy could come back to your room (visiting hours start at 10). We sat there for a bit and then around 11:30 you had a few pretty big events. One of them you dropped your heart rate to the high 40's and had to be bagged. I cried. Tough to watch your heart rate drop that much and then come back up and then drop etc. There were a few people in the room making sure you were coming back up. Very scary. After that, they did an X-Ray to see the placement of your ventilator tube. They thought it was too far down and it was a bit further than they liked so they moved it. You kept having events. They put your RR back up to 30. You then got VERY pale and I cried even more. You did not look good at all. I was so nervous. And scared.
You didn't have another episode for a little bit after that and your color came back so we decided to get some lunch while you were still doing well. We had a quick bite to eat and then came back up to see you. We missed the neurosurgeon, but he checked you and put you on antibiotics for another 5 days just incase of infection. The resident that checked you out this morning said that your incision looked a little red, but the neurosurgeon said it was the right color.
They fed you the 4 ml's around 1 pm and around 4 pm they checked your residuals. Out of the 4 ml's they fed you, they got 3.25 back. They re-fed it to you and did not give you any new milk. The next time they checked it, they got the same amount back. They told the doctor and she said to get rid of it and give you new milk. They propped you up on one side so that it would help go from your belly to your intestines. If it is not digested again then they will stop your feeds.
They took some labs and your potassium was low. They wanted to wait to give you anything because you haven't been peeing a lot and if they gave you potassium, it could affect your urine output. You went a little bit, so they decided to start the potassium.
Around 5 pm you started having more episodes, but not as close together as the ones this morning. You were awake for about an hour and you just looked so uncomfortable that I started crying again. They decided to try the morphine again now that they put your RR back up to 30. You have been doing fine since and look much more comfortable.
I decided to stay at the hospital tonight just incase since you were having such a rough day. Daddy came to see you for a little bit and will be back in the morning. We love you so much and we hope you are comfortable. We know you are strong and will get through this. We hope you have a better night and a better day tomorrow. I'll be right here all night with you buddy! Hang in there! 

Tuesday, April 19, 2016

Surgery Update - April 19th, 2016

I almost was unable to post tonight - on one of the most important nights that I know everyone is looking for an update. My computer isn't working well so this is my 4th time restarting it and hopefully I can get through this!
Mommy, daddy, and your grandparents got there really early this morning so that we could see you before you went in for surgery. We all talked to you and prayed. They were late coming in to get you, but once they did, everything sort of went quick.
The neurosurgeon came and told us that everything went well. He said that you had a lot of pressure before they put the shunt in. He gave mommy and daddy a piece of the shunt, your second haircut, and the information for your shunt.
When you came back from surgery, you had two incisions. One behind your ear in your head, and the other near your belly. You are now intubated again. Throughout the day, they kept weaning you down so that they could eventually extubate you. They will most likely be doing that in the morning.
It took you a little bit to wake up, and even when you did, you were still sleepy for the day. They gave you some meds to help keep you comfortable.
Throughout the day, we all took turns (okay well mommy didn't - I stayed the whole time) coming to see you. The nurse said that you only had peed 1 cc so they were going to give you some fluids to see if that could make you go to the bathroom. After the fluids were finished, she waited a little bit before checking your diaper and you had went 11 cc's. Since you went to the bathroom, I felt comfortable leaving to get some rest since we had been up since 4 am. Around 4 pm mom-mom and pop-pop left and then at 5 mommy, daddy, grammy, and poppy left. We went to grab something to eat, and I called the nurse before her shift was over. She said that since we left, you only peed 1 cc again. They were going to get a bladder scan to see what was going on.
When I called again around 8:30 pm, the night nurse said that she was going to check your diaper with your care at 9 pm. No bladder scan had been done. She said that they were going to wait until the morning to extubate you. I told her that I would call at 10:30 to see how everything was. She didn't answer, but I just got off the phone with her now and she said that you peed 10 cc's with your 9 pm care and they were just going to monitor you and not do any tests yet. She said that they were holding off your feeds until tomorrow to see how you were doing and they would check your electrolytes in the morning as well.
Please continue to pray that everything goes well and that Mason is able to continue going to the bathroom with no problems. Also, please pray that there are no infections that develop, and that the shunt continues to work well.
We love you and are proud of you for staying so strong today. We will be there tomorrow to visit you and keep you some good company! We love you buddy!

Monday, April 18, 2016

Big Day Tomorrow - April 18th, 2016

The doctor called me as soon as I got to the hospital and told me that he moved his schedule around a bit and you are now the first surgery tomorrow morning. Your surgery is scheduled for 7:20 am. Mommy, daddy, mom-mom, pop-pop, grammy, and poppy will be there to see you around 5:30 - 6:00.
This morning at 10:00 am you had a CT scan in preparation of your surgery. The nurse told me that it wouldn't take long and wheeled you away at 9:45. At 10:45 you still weren't back, and the nurse called the other nurse who was near your room and told her to tell me not to be worried, that you were just a little feisty. Shortly after, you came back.
When the doctors did their rounds there really was no new news. The attending said to me "how do you feel about going back to Virtua?" and I got really excited for a minute until I asked about your hernia. She said that she forgot about that and you would have to have it repaired at CHOP. I asked if that meant we had to stay at CHOP for the rest of the time that you were there and they said yes. So another month and a half (give or take) of traveling back and forth to Philly.
The neurosurgeon told us that he would come to speak with us around 2-2:15 so that daddy could come. The doctor ended up coming a little early and I asked him all of the questions I had (a page and a half). When he saw my list he asked me if he needed to go get a glass of water haha. Daddy was a little upset that he didn't get to see the doctor at that point but the neurosurgeon said he would be back to talk to him. We ended up leaving around 3 and so he called us to see if we had any more questions.
I got a few phone calls after that from the hospital. One from anesthesia making sure I gave my consent, and one from the PA letting me know that your hemoglobin came back low so they needed to do a blood transfusion before your surgery.
You had a pretty good day, about two events that I can remember. I was going to hold you around 3, but then I remembered you had your lab work at 3 pm. We ended up leaving around then so that mommy could go home and get a few things done before tomorrow. One new thing that the nurse told us was that you no longer had the feeding tube in your mouth, it is now in your nose. I like that much better!!
When I came back around 7 pm, I wanted to hold you since I didn't get to earlier. I was told by the day nurse that if you had your IV's in I wouldn't be able to hold you. I saw that you had an IV in and got really nervous. I asked her if I could hold you and she said that you were going to get your blood transfusion and that the blood was ready so I couldn't hold you. I cried. The night nurse was there (they were switching shifts) and she told me that she would let me hold you while you were getting your blood (apparently it is illegal - she told me when I was putting you back in). I thanked her because I was able to hold you before you went for surgery.
So, I am super nervous about tomorrow. I am sure I will be a mess when you go in. It is a 30 minute procedure and the whole time I will be nervous until I see you again. I am praying and I know plenty of other people are praying for you. You will feel much better after the shunt is in.
We love you more than anything and pray that all goes well tomorrow. We know how strong you are and how much of a fighter you are. You will come out stronger than ever! See you in the morning buddy! You have a big day ahead of you!

Sunday, April 17, 2016

Waiting for the Day/Time - April 17th, 2016

When I came this morning, rounds were already finished. The nurse told me that you did well over night, and that your feedings were now over 30 minutes. She said you are going to have a CT scan tomorrow at 10 am so the neurosurgeon can see what is going on before the surgery. The doctor moved the pre - op blood work to Monday at 3 pm since no one knows when the surgery will be and she doesn't want to have to stick you twice. They are keeping your isolette at 28 degrees Celsius so that you don't lose any weight before surgery. After surgery they will start weaning it down so that you can go in a crib. You also got tapped again today.
I held you for about an hour and a half today. You had a few brady's but came back on your own from them. You are definitely aware of when it is time to eat now - you wake up and cry for a minute and then once you get fed you go right back to sleep. Tomorrow I am going to try and do kangaroo care again. It is so much easier now with the nasal cannula.
We do not know when your surgery is going to be. It is either Tuesday afternoon or Wednesday morning. We are going to talk with the neurosurgeon tomorrow. He told us he would call and let us know a window so that daddy can come and talk to him as well. We should also know a definite time for your surgery so grammy and poppy can come and so mom-mom can get a sub for school.
Tonight when I called she said you were doing great. She said she gave you a bath at 8 pm and changed your ng tube. She said you cried for a minute and then went to sleep. You are 16.5 inches long, and you gained 10 grams which is still 4 lb 3 oz. She said you have had a few brady's but again you are coming back on your own and they are quick.
We will see you tomorrow buddy. We love you so much! Stay strong and keep fighting! You are doing great!

Saturday, April 16, 2016

An Emotional First - April 16th, 2016

Today was a great day. We originally went in at 10 am as we were told that we would speak with the doctor about your surgery. We were given a window from 10 am to 1 pm. We sat there and as time passed, I asked the nurse to let him know that we were there (there was a miscommunication with another doctor before so I just wanted to make sure that they knew we were there). Noon came and I figured since he didn't come speak with us yet, I wanted to hold you. This was the first time that I held you all swaddled up. It felt really good to hold you like that! Now for the emotional first... daddy wanted to hold you! I immediately called the nurses name so that we could get this done. She came right over and took you and transferred you to daddy. Mommy cried. I absolutely loved seeing you with him. It made my heart melt.
The doctor never came by one so the nurse sent another message. The resident called and then eventually the doctor said he forgot and he felt terrible about it. He offered to come in tomorrow to speak with us. We didn't want him to come in on his day off so we are going to speak with him on Monday. He called us to apologize and said that he wanted to change your surgery to Wednesday. He said he would confirm it tomorrow with us.
You only had one event over night last night which was great. When I called tonight, she said that you have had no events. She also said that she noticed that you are starting to wake up for your feeds. You woke up a little before 9 pm and she fed you, changed your clothes and your blanket, and your diaper, and then you fell back to sleep. She said you gained weight (again, you are gaining kilograms but not necessarily ounces) so you weigh 4 lb, 3 oz. She said that you are doing great. This is the trend I love! Doing better and better every day!
We love you and will see you tomorrow. I can't wait to hold you again! Speaking of holding, there is a contest that will start on Mother's day and end on Father's day and they record how long you hold your baby and the person who holds their baby the most wins. I am on it! Stay strong and keep fighting!

Friday, April 15, 2016

Getting Better and Better! - April 15th, 2016

The nurse this morning said that you did well over night and had no events. Nothing much to report.
The doctors made their rounds early this morning and as they were talking, I was putting clothes on you. I know that they were going back and forth on whether they wanted to tap your reservoir. Eventually they decided that they would. They ended up taking 17 cc's off. The PA that did it said that she did your first tap, and now she is the one doing your last tap. When she was finished tapping you, I asked her if you were going to go on high flow (since they forgot about you yesterday) and she said she doesn't see why not. Respiratory came to change it and you had it off your face in no time. This kept happening so they had to use a different tape - which didn't stop you from taking it off. Luckily you do well without it.
After we dressed you and swaddled you, the nurse put your isolette on a certain temperature (I don't remember what it was exactly) and said that every 3-4 hours she would turn it down 0.5 degrees Celsius. If you could hold your temperature after getting down to 26.5 degrees Celsius, you would be able to be put into a crib instead of an isolette. You did very well with that while I was there.
We found out that your surgery for your shunt would be on Tuesday. We are going to talk with the neurosurgeon tomorrow so we can ask all the questions that we have about the surgery. Hopefully this will make me less nervous about it.
I just got off the phone with the nurse that is working tonight and she said she did your care at 9 and you did great. No episodes for her, doing well on the cannula, and nothing else to report. I like these kinds of calls!
Mommy and daddy will be there tomorrow morning. We love you and we are so happy you are doing so well!

Thursday, April 14, 2016

A Very Good Day! - April 14th, 2016

Happy 7 weeks, Mason!
You only had a couple events over night, all self-resolved. Other than that, you did very well for the nurse over night.
When I got there, PT was there and asked me to help her develop a care plan for you. I told her all the things that you were good at, things that startle you (so that the nurses can be careful doing those things), things that you like and don't like, etc. She typed it all up and hung it on your isolette so that the nurses can see it and help you!
Neuro came around and said that your head felt a little full and that you would be getting tapped within the next 24 hours. I asked them when we would know if you were getting a shunt and they said that you would be getting one next week. Later, the neurosurgeon came and said that the surgery would be either Monday or Tuesday. I asked him when we could sit down and ask questions about the placement of the shunt and he said he is available on Saturday. This surgery makes me super nervous, but I know that it is best for you. 
During rounds, they surprised me and said that they were going to try you out on the ram cannula. Yesterday they said they wanted to wait until you gained more weight. You did gain weight, but only 10 grams. Anyway, they said you could try it! They said that if you did well for 6 hours, they would take away the CPAP and put you on high flow. Progress!
Respiratory came around and switched you from the mask to the ram cannula. We can see your head and face now! Kangaroo time was SO much easier now that you have the ram cannula. Overall, you just looked so much better. I am pretty sure you hated the mask on your face. Every time you would move, it would move off of your nose.
Six hours later the doctor came around to see how you were doing. I told her that you were doing very well on the ram cannula. The nurse told her the same. The nurse told me that she didn't see any orders to take you off the CPAP, but maybe tomorrow. Either way, no more mask!
Daddy had me hang a Flyers towel on your isolette tonight for the playoff game tonight. The nurse said she would make sure that it stayed on the isolette (daddy was trying to figure out a way to put it on so that it would stay).
Here comes the exciting news! When I called tonight, she told me that you have had no episodes, that you now weigh 4 pounds, 1 ounce, AND that you should be able to wear clothes tomorrow!!!!! Woo hoo!!! How exciting!! As soon as I got off the phone (at 10:45 pm) I started doing laundry so I can bring you some clothes in the morning!
Mommy and daddy are SO beyond excited at how well you are doing. It feels like we have waited forever for these things to happen, and they are finally happening! Keep staying strong and fighting hard!! We love you SO much!

Wednesday, April 13, 2016

Mommy Saved the Day - April 13th, 2016

When I came in this morning, the neuro residents were just finishing up. They said that you didn't have to be tapped today, but they were going to go and speak with the doctor about shunt placement since you have been tapped more frequently. I didn't hear anything else about it all day.
The nurse told me that you have been good with her so far and that you did well over night. You had a couple brady's, but you came back on your own from them. I helped with your care and told her that I would be holding you from 1-3 again.
The doctors rounded and looked at a couple of your growth curves. You are fluctuating between 50 and 75 percent for head circumference (they said that is because you are getting tapped some days) and then for weight you are in the 25th percentile. They said that everything looks good and they were not going to make any changes unless you were to start having a lot of episodes. I asked if they would wean your CPAP down, and they said that you were already pretty low so they want to see you gain some weight (you were at 1760 grams yesterday) and then once you gain a bit more weight, they will wean you down to 4 for a day and then put you on the cannula. However, if you have surgery, you will have to be intubated, so we will see what happens.
Around lunch time, there were people walking around resetting all of the monitors in every room. Apparently they were putting them all to the default settings. I figured they knew what they were doing. Well, when I was watching the monitor about an hour later, I noticed your heart rate was dropping and no alarms were going off. When it hit 83 I notified the nurse who was in the next room and made sure she knew that no alarm went off for it (the alarm usually goes off in the room she is in too). After making sure you were okay (you came back up on your own), she looked at all the settings and said that the alarm should of went off. She called the people who just came around to set all the monitors to default settings and they came back around. I left to go eat lunch at that time (and made sure the nurse would not leave his bedside) and when I came back she told me that the monitor was fixed and that they had to go around to all 98 beds to reset them all again. All I could think about was how scary that was. What would of happened if I wasn't there and if this was an episode where you didn't come back on your own and needed a bit of stim? Or what if another baby isn't that strong yet and the nurse wasn't staring at the monitor? After she said it was fixed I continued to stare at the monitors  while I held you to make sure that the alarm DID go off if your heart rate dropped. Yours did not drop at all the rest of the time but another baby's did and the alarm did go off. Like I said before, I am going to have my nursing degree after this!
I did your care one more time before I left. You were doing great while I was there. I feel much more comfortable leaving on days that you are doing well!
I called around 10:45 pm to see how you were doing and she said that you didn't have any episodes for her (she has been there since 7 pm) and you had gained 20 grams. You are now up to 1780 grams which is still 3 lb, 14 oz, but I have to mention the grams because you are still gaining weight. Six more grams makes you 3 lb, 15 oz, so hopefully that is what you will be tomorrow night.
I am glad you had such a good day, Mason. Mommy and daddy love you and are so happy to see that you are growing and doing well. We know how strong you are and how hard it is to keep fighting, but are so proud of you for continuing despite any setbacks. I will see you in the morning buddy!

Tuesday, April 12, 2016

Tapping and ROP - April 12th, 2016

Following up from the last blog, they ended up doing an ultrasound of your head (second one of the day) because you had 8 episodes between 7 pm and midnight. The ultrasound came back stable, so they weight adjusted your caffeine and gave that to you at 1 am. From midnight to 7 am, you had 3 episodes.
When I got there around 9 am, the nurse told me that they think they either need to give you a blood transfusion or maybe they weaned your CPAP settings too fast. She told me about the ultrasound last night and the episodes. She said you have been good for her so far. She said to me "you know he has his eye exam today, right?" and I told her that I asked the doctor yesterday if he would have his eye exam today (they do them on Tuesdays) and she told me no because they give her the orders 24 hours in advance and she didn't get any. So I said to the nurse, I figured he would but the doctor said he wouldn't. Mommy is on her way to becoming a doctor while being here.
The neuro residents stopped by to feel your head and said that it felt fine.
When the doctors rounded, I asked them a ton of questions. I refuse to look at google for any of my questions because I don't want to read the worst possible things that could happen. Anyway, they increased your feeds to 33 ml's every 3 hours. They are not going to do a blood transfusion yet (hemoglobin was 9.4) because they said it would tell your body that you are making enough blood when you aren't. They said in the near future you would need another, but for now they would hold off. The nurse told them you were doing well breathing, so the doctors just kept your settings as they were. They started talking about adjusting the cc's they take when they tap (they usually take 10 cc's) and said that now that you are bigger, they can take of 16 cc's. They felt your head and decided that they would tap you again today. (Neuro said you felt fine, so maybe they thought because of the episodes they would take more.) They got 15 cc's. I asked when they would make a decision about placing a shunt and the doctor said this week. I am assuming since you just got tapped Saturday, Monday and Tuesday, that you will need one. After they tapped you, I think you had two or three episodes until 8 pm when daddy and I left.
Around noon, the ophthalmologist came. He said that he was going to look at you and decide whether he would examine you in one week or in two weeks. There was also a music therapy person there playing the guitar because they said it may help you through the exam. You hated the exam regardless. When the doctor finished, he said that you didn't need to be examined for another two weeks. He said that you are at stage 1 for ROP (retinopathy of prematurity). There are 5 stages. Stages 1 and 2 usually resolve themselves 90% of the time.
After your busy morning, you got to relax a bit. You did pretty good all day. Only the few episodes I mentioned already. I didn't hold you today because you already had a lot going on today. I will definitely hold you tomorrow!
I called around 10:15 pm to see how you were doing and the nurse was busy but another nurse said your nurse told her to tell me that she did your care and you did great and that you went back to sleep. She said she did not get a chance to weigh you yet, but I am so curious if you gained enough to be 4 pounds! I will know in the morning when we come see you.
Please continue the prayers for Mighty Mason. He continues to fight every day.
Mommy and Daddy love you and will see you in the morning. We hope you do well over night! Stay strong and keep fighting!

Monday, April 11, 2016

Hoping for Better News - April 11th, 2016

This morning I got there early so that I didn't miss anything. I got there before you had your ultrasounds and before the doctors rounded. I even had time to get a coffee!
I waited for a bit before the ultrasounds happened. It took her about an hour to get all of the pictures that she needed. I had to go to the bathroom so I left the room for abut 2 minutes and came back and the doctors were there. The nurse said that your head circumference went up from last night and is now at 32 cm. They went over all the usual stuff and said that they would most likely tap your reservoir today. They said that you haven't had any episodes since the 9th (no documented ones meaning the others have been so quick and needing no stim so they don't need to document them). They also said that they would most likely make a decision on whether you needed a shunt this week. Other than that, no changes were made, and since the ultrasound tech was still there, we didn't get any results.
Later in the day when I was holding you, the PA came and wanted to tap your reservoir. She said kangaroo care is more important so she would be back later. She did say that both of the ultrasounds were stable, and that nothing had changed on either of them. At three we put you back and did your care. You are now wearing bigger diapers because the other diapers you soak through so much. These diapers are big on you, but at least you aren't soaking through them.
She came back to tap your reservoir around 3:45 pm. She got 10 cc's which is what they like to get when they tap. She said your head felt much better, but the circumference was still the same (32 cm). After tapping your reservoir, I asked the nurse if she ever gave you your lovenox shot at 3 and she said that she forgot. She left to go get the shot for you. 
Around 4 hematology came and said that you were going to come off of the lovenox because there was too much of a risk of bleeding since you were being tapped so often. She said that they would do an ultrasound on Monday to see what is happening with it. She said that since it was stable this time, they think it will still be stable next time, but it could also grow larger or travel. If it is traveling or growing larger, she said there would be no option other than to put you on the lovenox again. At this point the nurse was getting ready to give you your shot so I told hematology that she was getting ready to give it to you so they stopped her. The nurse said "I guess everything does happen for a reason!"
After you got tapped and right before mom-mom and I were about to leave, you had an episode. Usually when you have episodes it means that you need to be tapped, but this time you had none before and now you had one after. As soon as you settled down we left.
When I called tonight, I was hoping for better news. The nurse said that you were having more apnea events, and that the team was at the bedside as we spoke deciding a plan of action. She said they were trying to figure out whether to tap your reservoir again. If they didn't they were going to come up with another plan of action. She said she would call me if they decided to do anything.
Praying that everything goes well tonight and that your episodes subside. We love you more than anything. We know that you will stay strong and keep fighting like the last 6 weeks! See you in the morning Mason!

Sunday, April 10, 2016

Look at You Grow! - April 10th, 2016

Today we came in the afternoon and I held you from 1 to 3. When I took you out of your isolette and put you on my chest, you went to sleep fairly quickly. You always seem so comfortable when you are laying on my chest. I can't wait to be able to bring you home and do it all the time without you hooked up to anything!
The nurses (we had two today - I am assuming one was training) said that you have been doing very well. They said that the doctor saw you without your interface on and you were breathing well so she decided to wean your ventilator settings down again (your PEEP is now at a 5). That is the only change that they made today. They said that you have been doing very well with the change.
After I held you, read to you, and put you back in the isolette, I noticed that your foot was swollen again. I told the nurse and she called the PA. The PA said that she was busy but she was going to send down another PA to look at it. When the PA came, I made sure to tell her that I had just finished holding you, and the last few times your foot has not swelled when I held you. She took a look at it and said that it looked okay, nothing had to be done STAT. She said they might do the ultrasound a little earlier than tomorrow if needed. The PA that came said that our PA was going to come look at it in about 30 minutes. We left and I told them I would call to see what was going on.
When I called, she still hadn't come to take a look at your foot. She took down my number and said that she would call me as soon as the PA came to look at it. We went to dinner and came home and I still did not receive a call. I called at about 8:30 pm and the nurse said that the PA must have left and never came around to look at your foot. However, the nurse said that it must of been the way that you were positioned on me because it didn't look swollen anymore. That is definitely a good thing, but I am glad nothing was seriously wrong since the PA decided not to come. I asked about your weight and she said that she had just weighed you and measured your length. You now weigh 3 lb. 14 oz and are 16.1 inches long! She said that my breast milk was thick and wouldn't go through the tube, so I must be feeding you well!
Tomorrow I am coming bright and early because I want to be there for the ultrasounds, blood work, and rounds. Tomorrow is another big day. Your eye exam should be on Tuesday, so two big days in a row. I will be there early on Tuesday as well, just to make sure that I do not miss your eye exam.
Please pray that the ultrasounds and blood work come back well. Please pray that your brain heals and the blood clot keeps dissolving.
We love you and I can't wait to be with you tomorrow! Hoping for some good news! All of the nurses we see have said you have been doing so well. Hoping for the same news tomorrow.

Saturday, April 9, 2016

Uneventful - April 9th, 2016

This morning I planned on getting a lot done that I haven't been able to do. Our plan was to get things done in the morning and then to go to the hospital later. I made sure to call after the doctors rounded and the nurse said that there were no changes. She said that you may need your reservoir tapped today, but that is about it.
When we got to the hospital later, she said that they did tap your reservoir and they got 10 cc's. She also said that they decreased settings on the ventilator. She said that you haven't had many episodes, and when you do, you come back on your own.
Before we left, you spit up quite a bit. She cleaned you up and then gave me the blanket back that you spit up on. I noticed that there was dry spit up, so either she or the previous nurse didn't catch it. Hopefully he hasn't been spitting up often.
I called around 1045 pm to see how you were doing and to ask if you have been continuing to spit up. You have not spit up since, and she said not really any episodes either. She said there was one where she had to rub your arm and you came right back. Other than that, you were doing well.
Not much news today - which is a good thing. I am going to go in the morning tomorrow and stay with you for a bit. I most likely will put in for a sleep room tomorrow so that I can be there in the morning on Monday when they do your ultrasounds and blood work.
We love you and will see you tomorrow! Stay strong buddy!

Friday, April 8, 2016

Small Changes - April 8th, 2016

Today we didn't come to see you until around 4 pm. Mommy had her follow up appointment for having you, and I had to run a few errands and I even got to hang out with a friend! Once I was finished with all that, we came to visit you.
I called earlier this morning after the doctors rounded to get an update. The nurse said that the only thing they changed was that gravity was now taking down your food like it was a few weeks ago, so instead of 60 minute feeds, you now have 20-30 minute feeds. She said you have been doing well on them. She also said that you have only had two episodes since yesterday at 4:30 pm. She did also say that the doctors came around and said that you may need a tap either today or tomorrow. Since you weren't having episodes, they figured you wouldn't need a tap today. Maybe tomorrow.
When we got to the hospital today, she asked if I wanted to hold you. Of course I did! I got to hold you for about an hour and a half. You looked so comfortable and slept almost the whole time! Usually you are awake in the beginning, but it seemed as if you were so comfortable, you just fell right asleep!
Before we left you kept having episodes, but you would come right back up. I told daddy that they didn't make sense because your heart rate didn't match the other heart rate on your monitor. When I called to see how you were tonight, the nurse said she changed all of the wires because your heart rate wasn't matching up (I should just quit teaching and become a nurse) so you haven't had any episodes since.
Seems like you had such a good day. I feel like the good days are finally becoming more frequent. I hope that it stays that way. We definitely need everyone to continue to pray for you.
Mommy and daddy love you and we will see you tomorrow. Mommy is going to try and get more things done around the house in the morning and we will most likely be up later in the day. Keep fighting, you got this!

Thursday, April 7, 2016

Happy 6 Weeks! - April 7th, 2016

The nurse told me that you only had two episodes over night. That was much better than the day you had yesterday. I hoped this was a sign for what today would bring.
As the doctors rounded, they didn't really have too much to go over. You are now 3 lb, 7 oz, and since you only had one incidence of spitting up yesterday after your feeds, they increased your feeds from 28 ml to 30 ml every 3 hours. They are keeping your feeds over 60 minutes. I was there until about 5 pm today, and you didn't spit up after any of your feeds while I was there. You are on the max dose of caffeine, so that can't be changed at all. They mentioned you having a busy Monday. You are going to have blood work, an ultrasound of your leg, and an ultrasound of your head. I am hoping that your eye exam is not going to be that same day. That is just way too much for you. The eye exam in an of itself is a lot for you.
I got to hold you from about 1:30-3 again. You are always wide awake when I start holding you and then you doze off about 10-15 minutes after laying on me. You were licking me for the first 10-15 minutes again - I am assuming you are looking for your food! Soon enough when you get a little bigger.
When I called tonight to see how you were doing, she said that you were doing very well. Nothing really to report! Keep it up!
We love you Mason! See you tomorrow!

Wednesday, April 6, 2016

Too Many Episodes for Mommy! - April 6th, 2016

Where to start.
Last night you did good. Neuro came by and checked on you and said that you felt full so she was going to leave it up to the NICU team to decided if they wanted to tap you or not. She also said that since you weigh over 1.5 kilos (you weigh 3 lb, 6 oz), they were going to talk about possibly placing a shunt next week. This came as a shock because last time I spoke with the neurosurgeon, he said there was only a 20-30% chance that you would need a shunt.
The PA came around with the doctor and said that they were going to tap you today. She said she would be back at 11:45 am to tap you. She said that she wanted to go up to 30 ml on your feeds today. She wanted to keep your feeds over an hour.
After the PA left, you had a pretty big episode. Your heart rate, RR, and Oxygen dropped for what felt like forever (but it was more like a minute) and they had to stim you. I was on the verge of crying when you came back up. Good thing they were tapping you today! After you had your episode, you spit up.
After the nurse called the doctor to tell her, she said that she was not going to increase your feeds. She also said that she would be around at 11 am to tap you. If you were still having episodes, she said that she would increase your CPAP settings. When I told the PA about the news of neuro telling me that you might get the shunt next week and that it was a shock to me, she said that the doctor hates when the residents say things before he gets to tell the parents. She said if he continues to need the tapping, he most likely will need a shunt. She ended up increasing your CPAP settings.
After even more episodes, the nurse called the PA to see if it would be a good idea to get an X-Ray of your lungs just to rule things out. The X-Ray came back and the PA said it looked good.
The neurosurgeon came in to feel your head and to clarify what his resident told me. He said that he hates when his residents give news that he did not give. He said to clarify, he would not put a shunt in before next week because he wants the lovenox to work at the blood clot. He also said that he wants you to continue growing in the meantime. He did say that the chance of you getting a shunt now is above 50%. We just have to see how often from here on out you have to get tapped. I was pumping (covered up) when he came in and he told me the above and then he said "okay well you have those things on and it's getting a little weird so I'm gonna go now." He stayed and told a few jokes (he is hilarious) and then left.
Your episodes slowed down a bit and we did your care. I went to eat some dinner and when I came back you were still doing well. Shortly after, you started to have a few more episodes, but since then you have been fine. The PA said that if you are still doing okay by tomorrow, she will then increase your feeds to 30 ml over an hour.
Right before we left, you had one episode and spit up after your feed. Not sure what the PA is going to do tomorrow.
Please pray that the night is calm with no episodes.
We love you and will see you in the morning! Stay strong buddy!

Tuesday, April 5, 2016

More Progress - April 5th, 2016

This morning I got to the hospital and they said you were good overnight. I was going to wait until the doctors came for rounds but I decided I really needed coffee this morning! I got coffee and then came back upstairs to wait.
Hematology came before the doctors. They said that they don't think it is worth the risk to keep you on the lovenox for 6 weeks. They said that the last ultrasound looked good, and they are going to do another one come Monday. If the one on Monday comes back good, they are going to take you off of the lovenox. Since you are getting tapped at random times, they don't think that it is worth the risk of bleeding. I asked if they thought that it would travel if we came off the meds, and they said that it was unlikely.
The doctor came in after hematology. They said that they wanted you to go from 90 minutes to 60 minutes for you feeds. They also said that they wanted to wean you off of the ventilator more. They decided to put you on CPAP instead of NIMV. You no longer have a respiratory rate. You are basically breathing on your own but still have some pressure to keep your lungs from sticking together. More progress!
Tomorrow they want to increase your feeds. Not sure what they want to increase them to yet, but I will know in the am. Again, more progress!
I did hold you today for almost 2 hours. You did great. You look so comfortable when I am holding you. I am so lucky to be your mom!!
Mason, you are doing amazing. Keep it up! We love you so much and can't wait to take you home!

Monday, April 4, 2016

And the Results Are... - April 4th, 2016

This morning I got to the hospital nice and early. When I got there, the nurse didn't really have any new information to give me other than you had just got your 2 ultrasounds, and she said they were there for what seemed like an hour. I knew I would have the results once the doctors did their rounds. All I could do was wait.
After doing some thank you notes, I saw the doctors coming towards your room. I put everything away so I could pay attention to what they would say. She said that the head ultrasound came back fine - no bleeding. Phew. One down, one to go. The ultrasound of your leg showed that the clot did not extend or move. It showed that there was actually some flow around it. The doctor said that she wanted to speak with hematology about upping the lovenox dose since the anti-10a came back at .32, sub-therapeutic. I felt so much better after hearing about the two ultrasounds. Each day that passed I would think about if the clot was moving or if there was any new bleeding in the brain. Thank you so much for all of your prayers!
The were only two things the doctor said she wanted to change. She wanted to change the duration of your feeds from 2 hours back to 90 minutes. She also wanted to weight adjust your feeds as well. You now are back to 3 lb, 5 oz. Later, we learned that the weight adjustment wouldn't do much, so your feeds will stay at 28 ml.
After your 1 o'clock caffeine and lovenox, I was able to hold you for a little more than an hour. You were so comfy on me - I hate to have to put you back in your isolette! I will be holding you again tomorrow, and hopefully for a longer period of time!
Mom-mom came to pick me up to give daddy a break. After staying for a bit, we were just getting ready to leave as the PA came. She said that they spoke with hematology and they wanted to keep the dose as it is. They don't want to risk any bleeding, and since the ultrasound showed that there is some flow around the clot, they thought it was best to keep it as is. You will be on lovenox for 6 weeks, and then they will evaluate you at that point. You will have weekly blood work, and an ultrasound at 5 weeks. Please pray that this blood clot resolves within the next 6 weeks!
Tomorrow is mommy and daddy's anniversary, so we are going to go out to dinner to celebrate. However, mommy will be with you all day! We love you and are so proud of how you are doing! Stay strong and keep growing Mason!!

Sunday, April 3, 2016

Keep This Trend Going - April 3rd, 2016

Today when we came, she said that you were having episodes overnight so they tapped your reservoir. They got 9 cc's (they usually get 10 cc's). After your reservoir was tapped, they said you didn't have any episodes. She also said that your heart rate came down into the 150's, as it was sitting in the 160's before your reservoir was tapped.
I was able to hold you for an hour and a half. It wasn't the best getting you out this time. They nurse and RT had a hard time with your interface and the tubes. The tubes kept coming apart and they couldn't get it so that they would stay together. They ended up switching to the prongs which they were giving a break because your little nose was bleeding. They kept that on when we finally got you settled, but switched to the other interface when we put you back so that they could give your nose a rest. Hopefully that heals quickly. Anyway, we had a good snuggle session while daddy napped.
Mom-mom and pop-pop came to visit you and you kept bradying. You came back up from all the episodes on your own. What made me nervous was your heart rate staying around the 180's, but the nurses said that is still normal. Your nurse changed while we were there to someone I have never met before. I am hoping she takes very good care of you!
I just got off the phone with her and she said that you haven't had many episodes since we left. She said that you weigh 3 lb 5 oz again. She also said you were 14.6 inches. Up almost an inch! She said you did well through your care and that you were doing well. She reminded me that you had your ultrasounds and blood work in the morning. Please pray that all comes back well!
Mommy and daddy love you and I will see you in the morning. Here's to hoping we have a great day tomorrow with some great news!

Saturday, April 2, 2016

Back to the Swollen Leg/Foot - April 2nd, 2016

This morning when daddy and I came, the doctors were doing their rounds as we walked in. The doctor said that you had a few episodes over night after your feeds, so they were going to extend the length of your feeds from 90 minutes to 2 hours. He thought your head felt good, so they weren't going to tap your reservoir unless you kept bradying and if lengthening the feeds wasn't working.
Daddy left after visiting to work on the house and I stayed with you. I was able to hold you for 3 hours. Originally, I told the nurse that I wanted to hold you at one so that at three I could put you back to do your care. When I thought about it, you have your lovenox shot at 1, and caffeine at 1, so I decided 1:30 would be best to hold you. I was able to hold you at 1:30, and I actually ended up holding you until 4:30, when the nurse was finished with a PICC line in another patient. I didn't mind at all. You looked so comfortable sleeping on my chest.
When I put you back, we noticed that your leg and foot were very swollen, and it looked like there was a mark on your leg. I told the nurse that your leg may have been up against my bra, so maybe that is why you were swollen. She called the doctor to come look at it just incase, and she said to elevate it for a while to see if the swelling goes down. When I was getting ready to leave, I asked her when she would contact the doctor again if it was still swollen and she said 6:30. I told her I would call at 6:45 to see what was going on.
When I called, she said that your leg and foot looked much better. She said that you had just had an episode as well. Other than that, you were doing well. She would tell the night nurse just to keep an eye out on your leg/foot.
Another day where you are doing well. We will take it despite the brady's that you had today. The majority of them you came right back up on your own.
We love you and will see you tomorrow after lunch. Stay strong buddy, you are doing great!

Friday, April 1, 2016

New Month, New Mason - April 1st, 2016

Let's hope it stays this way. This will be short and sweet!
This morning when I came to see you, the nurse didn't have any news for me. The resident from neuro came and felt your little head and said that he would leave it up to the NICU team to determine if they wanted to tap your reservoir today. I waited until the doctors rounded and they also felt your head and said that they didn't think you needed it today, but I am assuming it will be this weekend. The doctors wanted to try again to wean your respiratory rate down from 20 to 15. So far, you have been doing well on it! The only other change they made was increasing your feeds from 25 ml to 28 ml.
When I called tonight to see how you were doing, she said that you were still at a respiratory rate of 15. She said that you had a few brady/desats and she wasn't sure if it was because your feed just stopped. Hopefully that stops and you will have a great night!
We love you and are so happy you are doing well today! See you in the morning!