Thursday, March 31, 2016

One Major Episode - March 31st, 2016

This morning I wanted to make it so that I was there for when PT came. During your care, the PT jotted down some notes and watched how you handled care. After we were done with your care, she said that she was impressed with how well you did. She also gave me a couple things that I could do while the nurse was doing her part to help you feel more comfortable. I got a chance to practice a few times today when we did your care later. We also put you in a bigger snuggly so that you couldn't get your feet out. You can still stretch your feet out all the way, but you just can't get them above the bottom of the snuggly. It is more developmentally friendly for you. She also gave me a book to read about preemies in the NICU (I already read it - for those of you that know me I know you're surprised haha). She said that she will come once a week for now until you are in a crib and then we will do more "physical" PT.
When the doctors rounded, they went over a few things that they were going to do today. Since you spit up after a couple of your feedings, they originally fed you over a span of 45 minutes. Since you were still spitting up after that, they extended it to a span of 90 minutes. That has been working - so lets hope it stays that way. When the doctor said that you weren't having many episodes so he was going to wean your RR from 20 to 15, you had a major episode where your heart rate kept repeatedly dropped and they needed to stimulate you. The doctor changed his mind as soon as that happened so you are staying at a RR of 20 for now. They did blood work for the anti-10a and your level came back at .36. They said that they like it between .5 and 1, so they said they were going to speak with hematology to see what they wanted to do since your level was low. When they got ahold of hematology, they said to continue the same dose of lovenox, and they are okay will the .36 level. You will get another ultrasound of your head and leg on Monday, and another anti-10a on Monday as well. You are now on Vitamin D as well since you aren't getting any sun. You will be on that for a year and it is a tiny amount a day that you get.
...And for my favorite part of the day, I got to do kangaroo care with you! You are becoming more aware of things and this time you decided to spend the majority of the time licking me! You also sneezed a million times but they said that is because you are coming out of your isolette into the open air. We cuddled for an hour and a half until you had your next feeding. She said I could continue to hold you, but I get nervous having to move you during your feeding. The nurse was very nice and said I could always get you back out after your feeding but I didn't want to stress you out by getting you out, putting you back in, then getting you out again and putting you back in again. I loved every second of cuddling with you today (and every day I get to cuddle you)!
Daddy came to visit you tonight and was able to do your mouth care. Last time you kept your mouth closed for him, but this time you loved it. Daddy loved it as well. I can't wait for him to hold you. The nurse said today that he didn't have to kangaroo you, he could take you out in your snuggly if he felt more comfortable, so maybe he will be able to do that once he gets the courage! He still feels like he is going to break you because you are so small. However, you are up to 3 lb. 5 oz!  Keep growing buddy! We love you!

Wednesday, March 30, 2016

A More Relaxing Day - March 30th, 2016

This morning when I got there, the neonatologist was there. He had to do his paper work, so while he did that, I visited with you. You looked nice and comfortable in your isolette. Your blanket that people from church made you was on your isolette as well.
When the doctor was ready to talk, he said that he was almost 100% sure that there was not an infection in your foot. He said he will never say anything is 100%. Your foot did look better than yesterday. Your blood work came back fine.
You were supposed to have an ultrasound of your head this morning, and he said they decided it wasn't needed because the one yesterday showed enough. Since it showed that there was no new bleeding, they were going to talk with hematology about possibly starting lovenox at a full dose today. They also may just keep you on the half dose. I asked why they would keep you on the half dose if the other doctor told me that it wouldn't get rid of the clot and he said it would stop it from getting any bigger which is what we want. I asked when another ultrasound is scheduled, and he said on Monday you would have one on your leg and on your head. You may get one earlier if they feel they need to tap your reservoir. They want to make sure you do not get a subdural hemorrhage.
After your blood transfusion, you seemed to be doing much better. The neonatologist thinks that you had all the episodes yesterday because of your blood count being low and because of the stress of your eye exam. When I was there today, you only had maybe 2 or 3 episodes that resolved quickly without any stimulation.
Your feeds started back up at 9 am. They decided to start your feeds at 5 ml, and they were going to increase your feeds by 5 ml every 3 hours. At 9 pm, you were back at your full feeds. They also said that they were going to start adding protein to your milk in addition to the prolacta.
PT came by to observe you during your care but the nurse wasn't doing your care again until 3 pm, and the PT lady was done working at 3 pm. She said that she would come back for his care tomorrow morning at 9 am, so I am going to make sure that I am there at 9 am tomorrow morning.
As for hematology, neurology, and neonatology talking about either staying at a half dose or going to a full dose, they decided it would be best to start the full dose today. You are getting a shot at 1 pm and 1 am every day. Daddy had one of the doctors come talk to him because he wanted to know why we are waiting so long to get an ultrasound after starting the full dose of lovenox and they basically said that they aren't worried about bleeding unless they have to tap your reservoir. If you are on lovenox for 6 - 12 weeks, you most likely will have to have your reservoir tapped during that time, so we will just wait and see what happens. We will be praying that there is no bleeding if you have to have it tapped.
Today was so much less hectic than yesterday. I felt like I had so much free time today because I wasn't always worried about your heart rate dropping (which was most of the day), or going out in the waiting room while you had a test done. I called at 9:40 pm to ask the nurse how you were doing and she said that you were doing great. Nothing new is going on and you are having a good night. That is what I like to hear! Stay strong buddy - I will see you bright and early! Daddy and I love you so much!

Tuesday, March 29, 2016

What. A. Day. - March 29th, 2016

The title says it all. From the moment I got there until the moment I left was non-stop. I was happy to see the nurse we had after the experience I had yesterday. We were told the nurses would be more consistent, and I know we will have the same day/night nurses tomorrow that we had today.
Yesterday, one of the nurses was cleaning your IV and making sure that it was still good (even though you weren't getting any fluids through it) and she called the other nurse over because she thought it was leaking. The nurse that was training her checked it and said it wasn't leaking, that the tape would be wet if it was. Well, when I came in this morning, the nurse said they took out the IV last night because it was leaking. Awesome. Anyway, after the nurse told me about it, we did your care and she saw on the foot that had the IV a bump. She had the doctor check it out because it felt hard. The doctor said that it may be a pimple, or it may be an infection. She didn't know, but she wanted to keep an eye on it. She said that if you kept bradying, that she would get blood work done to rule out possible infection (they sent out a culture today). She also ordered some medicine to put on it to be proactive.
The doctor stayed for a while and said that last night you ended up having an ultrasound of your brain for a baseline to compare with tomorrow mornings ultrasound. This made daddy feel better.
You had to get tapped this morning, and when the doctor did it, she could only get 6 cc's when they usually take out 10 cc's. She said that she felt resistance at the end, so she stopped and wanted an ultrasound to make sure the catheter was still in the ventricle. She said that next time that you are tapped, neurosurgery will do it. When the ultrasound came back, the catheter was still in the correct place. She saved your CSF to make sure that neurosurgery didn't want to send it away for anything. When she spoke with them, they said to toss it.
During the morning/early afternoon, you kept bradying and desating. Some of the episodes were quick, but then others needed stimulation. You had two clusters of brady's while I was in the room, one of which was very scary for me. Since this kept happening, they decided to weight adjust your caffeine since you are now 3 lb, 2 oz to see if that would help, and if not, they would give you an extra dose of caffeine. They gave you the caffeine at 1 pm and you still brady'd quite a few times. I don't think they ever gave you the extra dose because of your blood work results.
You had an eye exam this afternoon, and they said that your eyes were still immature, but they did not see any disease or anything which is good. They said that they would repeat the exam in 2 weeks to see if your eyes have matured anymore.
When I came back from lunch, the nurse said that you had spit up. They had an X-Ray done to see what was going on with your belly since it grew 2 cm while she was there. The nurse told me that the X-Ray showed air and stool. They stopped your feeds to help your belly calm down. Just when you had reached full feeds of 25 ml! They decided to give you a suppository because although you have been going to the bathroom almost every diaper change, they wanted you to go even more. I changed your next diaper and although you didn't go anymore, I got nervous because I saw this clear pellet in there. The nurse said that was the suppository and I was happy to hear that because you didn't need anything else going wrong! They will do another X-Ray tomorrow morning and reassess whether to start your feeds again.
The results of the blood work came back and your hemoglobin was 8.5 so they decided to do another blood transfusion. They put an IV in your hand this time for the blood transfusion. After your blood transfusion, they will give you fluids since you are not having any milk right now. Hopefully in the morning you will be back on your normal feeding schedule at your full feeds.
Since the transfusion started, you didn't have any episodes. However, you did give me a heart attack. I was looking at you about 10 minutes prior to going to see you again, and when the nurse pulled back your isolette cover, your face looked like it was having an allergic reaction to something. Your chin and cheek looked like they were red and blotchy. The nurse even said you weren't like that a little bit ago. When she looked closer (and when my heart sank) she said that the IV was leaking a little and that you had wiped your hand on your face so it was blood - not an allergic reaction. Once my heart came back up from my stomach, and after seeing her clean it off your face, I felt much better. I did ask her about how the blood transfusion would affect the blood clot. She started saying that it wouldn't because the lovenox would be taking care of it, but I told her that the doctor said that since it is only half a dose, it wouldn't be doing anything to the clot. She said that since the blood is distributed everywhere, it shouldn't have too much of an affect on the blood clot, but she would keep a close eye on your foot to make sure it did not swell or have any changes to it.
At 8 pm you had your second lovenox injection. I told her that I wanted to watch it (but that I passed out in high school when watching someone give a shot) because if you are to continue this medication, daddy and I have to give it to you at home (assuming you will continue it for 12 weeks). Shockingly, I watched as she explained exactly how to do it and I did not pass out. I MAY be able to do that for you at home. That is questionable. Daddy may have to if I can't.
After mommy left, they said that they were going to give you a bath and change out your isolette. Your isolette was supposed to get changed during the day, but with everything going on today, the day nurse decided it would be best to wait until tonight to change you over. I agreed that that was a great idea.
So to recap, tomorrow morning you will have an ultrasound, X-ray, and blood work. Tomorrow we find out if you have any bleeding in your brain and if we can increase the dose of the lovenox. I am praying that tomorrow will be a better day for you. I am also very nervous about results of the ultrasound, and if you have an infection. One day at a time. That is what I try to tell myself. One day at a time.
We love you and are praying for you. We know that you will fight through everything. I will see you bright and early and I will be with you every step of the way.

Monday, March 28, 2016

Not a Fan of Much Today - March 28th, 2016

This morning when I arrived, you had two nurses on. I didn't realize it until about 10 minutes later, but one nurse was training the other nurse. The first nurse that I was speaking to when I came in didn't greet me like all of the other nurses. She didn't greet me by saying "Mason did _______ last night and he is doing _______ today." She just told me her name and went on with her business. A few minutes later she asked if I wanted to help with your care and of course I did. I changed your diaper and took your temperature. I asked her if you were going to have an ultrasound on your leg (because that is what was discussed last week) and she told me no and that the doctor came in and said that it looked fine. She said they also did blood work and the blood work came back fine. I saw that the pulse ox was on your left foot and it looked very swollen. I told her about it and she switched it to your hand. She said that hematology and neurology were going to speak again about your blood clot. She said that you will have a head ultrasound on Wednesday, and that the neurosurgeon came in and said that your head was fine and it didn't need to be tapped today. Your eye exam will be tomorrow. Your head and belly circumferences were fine as well.
When the second nurse came in, she introduced herself and told me that they were both working together. When she asked the other nurse if she did something, that is when I realized that she was training the nurse I first spoke with. I decided to ask her about the blood clot as well because I didn't like the first answer I got. I said it looked more swollen than usual and asked how they would know if the clot didn't move. She just said that they would keep an eye on it and make sure your color is good, she can feel your pulse, and your cap refill was good. Again, I wasn't happy with that.
I then noticed that your right eye was SO swollen. I told her about it and she said she noticed it this morning and she said she would change your position. She said that sometimes babies swell on the sides that they are laying on, and said that is why your eye was swollen. After a while of you laying on your back, the swelling did go down, and I felt much better about that. Your interface was messed up as well, so I told her to fix that too.
After I felt a little better, I sat back down and started doing some thank you cards because I am WAY behind with those. As I was writing them, all I heard were all of the nurses talking about their patients parents. I know that they want to talk about things that happen, especially when there is drama going on, but it is unprofessional to talk about them when there is a parent present in the same vicinity. This day was off to a bad start.
The nurse came to tell me that they were going to decrease your ventilator settings again (RR from 20 to 15) and then respiratory came in to fix that. A little bit later you had a cluster of brady's so the nurse called and had them change it back to 20. You were not ready to go to 15!
The second nurse asked me if I wanted to hold you today and I said yes. She asked if I did kangaroo or something else and I said kangaroo. She said good, that it was better for breastfeeding. A little while later, the first nurse asked me the same thing. I said that I would hold him at 3 after his feed. She said okay, great. Well, 3 came and went. Three fifteen came and went. Both nurses were with another baby giving her a bath. Guess I wasn't going to get to hold you today. (Later when daddy got there to pick me up she asked if I wanted to hold you and I told her there was no time now but I WILL hold you first thing tomorrow morning. She said she would let the nurse know.)
Your respiratory machine kept going off saying "disconnection?" and no one came over to check on you. Your one nurse was at lunch, and the other nurse was on the phone trying to get back her grad school email. She did not move one bit and kept talking on the phone the entire time. I am not talking like a few seconds or a minute of your machine going off. It kept going off over, and over, and over for a good 4-5 minutes. I eventually washed my hands, went in your isolette, and started fixing it myself. She still did not come over. After she was off the phone it started going off again, and she just started talking and did nothing for you. Eventually, respiratory came to check on you and fixed it.
Hematology came over at about 3:45 and asked if the team told me about the ultrasound. I said they told me you weren't having an ultrasound. She said that an ultrasound was done this morning and that your blood clot got bigger. She said now it is headed toward your heart, so they were going to start your lovenox with the approval of neurosurg. They would start you on half of the dose you were supposed to get for two days, and then see if there was any bleeding on an ultrasound on Wednesday. I asked if the clot could still travel for these first two days and they said yes. After they took a look at him, I left to call daddy. Today was not a good day with these nurses. He told me to call the doctor back in so that we could speak with hematology and neurology. When I spoke with the doctor to tell her that daddy wanted to speak with these people, she said that he will not be able to talk to your neurosurgeon. We would have to make an appointment 3-4 days ahead of time. Daddy was a little heated when he came.
When daddy got there, we waited and waited for the doctor to come back (she said she had to go see another baby and then she would be back). We waited an hour and a half before I said something and they called her. She said she told the nurses to call her when daddy got there. Anyway, she finally came and we asked a lot of questions. One question that I had was that if the one dose did show bleeding again in your brain, and the clot kept traveling, what would they do? She said that would be a tough call, and they would most likely start you on heparin, which they don't like to do with babies. Neuro's main concern with starting Lovenox is your most recent surgery, and the medicine making it bleed. There is also a concern with the bleeding that already happened to start rebleeding. This is why they are going to start you on half a dose of Lovenox first, so that they know if you will bleed and then make a decision from there. If you do not bleed, they will start you on a full dose on Wednesday after looking at the ultrasound. However, since you are not getting the full dose today or tomorrow, there is still a chance that it can keep getting bigger and traveling towards your heart. After she answered all of our questions, she said she wanted to start your first dose at 6 pm tonight. Your next dose would be tomorrow at 6 pm, and then the ultrasound would be Wednesday morning so that there had been enough time to see any changes.
We love you Mason and are praying that there is no bleeding that occurs and that we can get rid of this blood clot before it travels any further. Keep fighting - we know you can get through anything.

Sunday, March 27, 2016

Happy Easter - March 27th, 2016

I knew I was going to have somewhat of a rough day with you not being able to be home with us for Easter. I cried on the way to the hospital, and I teared up when I saw a couple and their daughter at the grocery store. I just wish you were able to spend every day with us like everyone else.
When mommy and daddy came this morning to see you, the nurse said that you were doing well. Your feeds were still advancing, and your fluids through your IV were being stopped today. Your feeds went to 21 ml at noon, and will go to 22 ml at midnight. Almost at full feeds! They also increased your calories from 22 to 24! Your ventilator settings went down again as well (Pinsp went from 16 to 15 - I don't even know what that is but that's what changed!). She said when you get your interface changed, you do very well breathing on your own while they make their switch, so she thinks they will be able to decrease your settings pretty quickly. You did well with the new settings today.
We came back again after having Easter dinner at our house (you will be able to be with us next year and I can't wait for you to be home). The nurse said again that you were doing great. She had you on your belly and you looked so comfortable. I filed your nails a little bit because they won't do that at the hospital. I also asked the nurse before leaving about your little cheek because mom-mom and pop-pop seemed to think your cheek was swollen. The nurse was very nice about it and said that she would be in the isolette if it were her child (and I wish I could fit in yours)! Your IV stand was gone when we came in as well. They will keep your IV in your foot for another couple days just incase, and then they will take it out. One less thing to worry about and to have on you! Pop-pop took a couple pictures of me, you, and daddy for our first Easter together.
Other than that, another uneventful day - just what we like. I am sure this week we will have more going on, with another ultrasound to see how your blood clot is, and your vision test which is on Tuesday. I am very nervous about that. I will take daddy's advice and I won't worry about it until I have to.
I am glad we got to spend some time with you today on Easter. So many people say to me "I don't know how you do it - I could never do it" and I honestly don't know how I am doing it. All my days blend together and time is going by so fast. Sitting in the hospital is a lot of work even though it seems like nothing, but there is no where I would rather be. We love you, Mason. Keep fighting and growing!

Saturday, March 26, 2016

Slight Scare - March 26th, 2016

Today I was able to come see you at the hospital because my glands were not swollen anymore and hadn't been for 24 hours. I was so happy that I could see you again!
When we got to the hospital, the nurse said that you only had one episode (which happened while we walked in) while she was on. She said you had a few overnight, but she didn't now how many. Other than that, she said that your left leg was the same circumference as your right leg. She said your foot looked good, your feeds were increasing, and you haven't spit up at all. All good news!
She asked me when I wanted to hold you today, and I asked her what she thought since my gland was swollen yesterday. She said she would recommend me not holding you until Monday, which I am okay with because I really do not want to get you sick if it was a sickness at all. I wouldn't be able to live with myself if I did. I don't want to rush away the weekend, but come on Monday!!
When I saw you, you looked so much bigger than I remember. Maybe not seeing you for one day made me realize how much you are growing. Your face is starting to fill in! While she was changing your diaper, I noticed your testicles were swollen (you will be sooo embarrassed one day by this). I told the nurse and she called the doctor so she could come and check it out for me (I am becoming more and more aware of everything and I am starting to ask a lot of questions). I also noticed that your little hand was swollen. I even started to think that your whole body was swollen (daddy thought I was crazy - and maybe I am) instead of thinking you were just growing. You can never catch a break!
The doctor came in and checked you out and said that they felt soft. She said it was hydrocele. She said it is normal in any baby, not only preemies. She said it would go away on its own. She said your hand was a little swollen because you were laying on that side and it would go down as soon as they turned you.
Daddy did some mouth care after the doctor left. You closed your mouth and weren't really a fan of it today. Daddy is doing very good with you and maybe pretty soon he will do kangaroo care! I can't wait to see the bond that you two will have (I am tearing up just typing this).
We left to come home and I organized more of your room and did more of your laundry. You have more blankets and bibs than I know what to do with!
I just got off the phone with your nurse to see how you were doing and she said that she is still advancing your feeds. You are still 3 lbs (same as yesterday) and she just gave you a little bath. Which is weird now that I think about it because you are only supposed to get a bath on Sunday, Wednesday, and Friday. Hmm... Anyway, you have no labs scheduled for tonight either, which means that you just get to relax and grow! Tomorrow is Easter and I know it will be hard for us to have dinner without you being with us, but we will visit you for a while in the morning. Hopefully I stay strong tomorrow!
Mommy and Daddy love you and we are so happy that you are still doing well despite the hurdles you have from time to time. You are truly our hero. Keep fighting Mason!! Before you know it you will be out of the hospital and home with mommy and daddy!

Friday, March 25, 2016

No News is Good News - March 25th, 2016

This morning when I woke up to pump, my left gland in my throat felt swollen. I immediately was worried that I couldn't go see you. I hoped when I woke up again at 5 am that it would be gone. However, when I woke up at 5 am, it was still swollen. I slept until about 7:30 am and got up and sat on the couch. Grammy asked what was wrong and I told her my throat was swollen and I couldn't see you. Grammy walked over to rite-aid and got mommy some Zicam. I took that immediately. An hour or so later I didn't feel swollen at all. I still didn't want to chance going to see you and getting you sick.
Daddy came to see you and they said that the ultrasound stayed the same as the last. That meant that the blood clot did not get any larger which was great. They also told daddy that your caffeine will now be mixed in with your breast milk instead of being given to you through an IV, which is a step in the right direction! They said that you have done pretty good today and overnight last night.
I came home and did some laundry to get your room ready. I still have a lot of things to do before you come home!
I called your nurse tonight to see how you were doing and she said that you were doing good. She said that your foot is doing well, your feeds are still advancing, and pretty soon you will be off of your IV's. She said that you had one episode where they had to stimulate you, but other than that you are good.
Happy one month Mason. I wish I could have come to see you today. It killed me knowing that I couldn't see you, especially since it has been one month since you were born. I am hoping all is well in the morning and mommy and daddy can come see you! We love you so much!!

Thursday, March 24, 2016

Some Good News - March 24th, 2016

When grammy and I arrived today, the nurse told us that your X-Ray showed dilated loopiness in your belly today, but they are going to continue to watch you. They are advancing your feeds again. Since you have grown, they increased your full feed from 19 ml to 25 ml. They were going to fortify your milk to 24 calories starting today, but they are keeping it at 22 calories for now.
Hematology came to speak with me about your blood clot. She said that she wants to start you on Lovenox, but the neurosurgeon does not think that it is worth the risk of bleeding in your head. She said that if he does okay the meds, then you would be on it for 6 weeks minimum, and 12 weeks maximum. (If you come home before you are off of the meds, mommy and daddy will have to give them to you when you are home. She said they would teach us how to give you the meds, and how to identify signs and symptoms of blood clots.) You would only have an ultrasound after 6 weeks if the meds are started. I asked how they knew that the clot didn't move, and she said that once you are on the meds, they know that the meds will stop it from traveling. If you are not going to be on the meds, they will do ultrasounds every few days to make sure that it doesn't move at all. If they see any signs or symptoms of the clot moving, they will do an ultrasound right away. She said that the clot could break off and travel to the lungs and cause a pulmonary embolism, so that is why they will do a lot of ultrasounds. Right now, she said they will chalk the clot up to having a PICC line in, having surgery, and having your transfusion. If you happen to develop a second clot, they will then do blood work to see if you have clotting issues. She also said that clots are common in preemies.
The neurosurgeon came in to check your head and he said it felt good. He said that since you haven't had to have your reservoir tapped very frequently, that he thinks there is only a 20-30% chance that you will have to have a shunt. At Virtua, they said that the IVH in your brain could cause an array of disabilities (I remember crying so hard that day) so I decided to ask the neurosurgeon what he thought in regards to disabilities. He said that he doesn't think your brain was affected much, so he is optimistic about you not having a disability. The developmental specialists were standing in your little room and jumped in to say that preemies and boys are at risk of disabilities. She said 1/3 of preemie boys have a severe disability, while others have less severe disabilities. I asked the neurosurgeon about the bleeding that you had and what effect the Lovenox would have on you. He said since that was an old bleed, he isn't worried about that, but he is worried about when he taps your reservoir and blood getting in between the skin and the skull. He said if that were to happen, it would be much harder to do your care. He is hoping that when you have an ultrasound tomorrow, that the clot starts taking care of itself.  If it gets larger, hematology and neurosurg. will have to speak again about the risks. Please pray that it does not get larger!
The developmental specialists spoke with us about starting physical therapy. They are going to come around next week and speak with us about your PT. They most likely will start next week. They also spoke about your therapy when you come home and if you go to CHOP for therapy, they follow you to kindergarten, and if you go to Virtua, they follow you until you are 2 or 2.5 years old. They would talk about the differences in the programs once it came closer to you coming home. They said they are trying to align the programs, but right now they are a little different.
I would say that today was a good day. A lot of ups and downs, but another day closer to you coming home. We love you! See you in the morning buddy! Stay strong!!

Wednesday, March 23, 2016

Swollen Foot - March 23rd, 2016

This morning mommy and grammy slept in a little bit and got to the hospital around 10:00 am. When we got there the nurse said that you were doing pretty good. There was only one episode to report. She said that you were doing good with your respiratory rate, so they were going to start weaning you down. Your rate went from 25 to 20 this morning. She said that you had an X-Ray this morning because your belly grew 2 cm and you spit up after your last feeding. They said your intestines looked loopy, but that they were going to continue your feedings, but hold them at 15 ml. They said they were going to continue to keep an eye out on it, only because you are at risk for NEC. They took a sample of your stool and tested it for blood, and luckily there was not any blood. You will have another X-Ray in the morning, and the doctor said your feeds would most likely start advancing again. The doctor took out 10 cc's of fluid from your reservoir as well.
The doctor came and spoke with us and I had a couple questions for her. The first question was about your hernia(s) and if you would have surgery before leaving CHOP. She said that you would have surgery right before coming home. I also asked her about the ultrasound of your brain and when that was going to happen and she said that you already had it and that there were no changes which was a good thing.
After lunch I was able to do kangaroo care again. I held you for two hours, and the nurse took your temperature an hour in. She said that you were nice and warm, so I continued for another hour. When I put you back in your isolette, I was looking at your little toes because you had very long toes when you were born. They didn't look so long anymore. I figured you were just growing into them now, but then I realized that your foot was swollen. I told the nurse and she looked and agreed. She elevated your foot and said that she was going to keep an eye on it. I asked if it could be because of the PICC line, and she said it could be, but she wasn't sure. An hour and 15 minutes later, the swelling was not going down so the nurse called the doctor. She came and said that she was going to tell the nurse to elevate it, but since she already had it elevated, she ordered an ultrasound STAT. You had an ultrasound about 10 minutes later and we had to leave unfortunately. About an hour later we received a phone call that you had a blood clot in your leg above your PICC line, in the same vessel. The doctor had said that she was going to take the PICC line out, and that you only needed it for a couple more days anyway, so they would just use an IV. She also said that usually they give a medicine to thin the blood, but with your size and the bleeding you had in your head, she doesn't want to risk it. She said the only way you would end up getting the medicine was if your limb was at risk. She said for now all of your vitals look good.
Around 10 pm we called the nurse to check up on you and she said that your foot is still slightly puffy, but all of your vitals were good. The coloring of your foot is good and she can feel your pulse with her finger. She said this is a happy medium right now, and your foot is not blue or anything which means that you are not close to losing a limb. We asked if you were going to have another ultrasound and she said they haven't ordered one yet, but she wouldn't be surprised if one wasn't ordered in the morning.
Just when we think you are doing so well, something happens. We are praying that the clot does not travel, and that it goes away on its own. We love you, Mason. We will see you in the morning. Keep fighting!

Tuesday, March 22, 2016

Stay Strong! - March 22nd, 2016

Today daddy brought grammy and I to the hospital. We got there and I asked the nurse how you have been doing and she said that you didn't have any episodes worth reporting. The ones you did have, you recovered really quickly on your own. The doctors and nurse think that it might have to do with getting the blood transfusion.
The neonatologist came around and told us that you have an eye exam next week, an ultrasound of your head tomorrow, and that they were going to start to fortify your milk with Prolacta today. He also said that they were going to drain your reservoir tomorrow. Your humidity was turned down today, and your humidity would also be turned down even more tomorrow.
On April 5th, you will start to have day/night cycling, meaning that you will have a cover over your isolette at night, and during the day they will pull off the cover. You will most likely get to wear clothes starting this weekend/next week. Everything that you wear has to have snaps, and cannot have a zipper. Your wires need to be able to go through the space between the snaps.
Later on, mommy got to hold you again. I held you for about two hours! This nurse did not call the doctor first, and she did not take your temperature for the two hours either. The nurse last time kept taking his temperature, called the doctor to make sure that I could hold you, and said I could only hold you for one hour. Not sure who is right, but either way, I got to hold you for a while today!
So far it seems like everything is looking up. Lets hope it stays this way!! We love you, Mason!! See you in the morning! Stay strong!

Monday, March 21, 2016

Blood Transfusion - March 21st, 2016

When I came in this morning, the nurse told me that you had 17 brady's last night. She had only recorded 2 this morning. The doctor split your caffeine dose into two to see if it would make a change at all. Throughout the day you did much better than last night.
The doctor came in and said that your CBC's came back fine and that he didn't think you had an infection. The only thing that was low was your hemoglobin, so they wanted to do a blood transfusion. He thinks that the blood transfusion will help with your episodes. I had to sign new paperwork since you haven't had a blood transfusion since Virtua.
As for your feedings, I also had to sign a paper for that. You are up to 11 ml at noon and 12 ml at midnight. Every 12 hours you increase one ml. You will be considered at full feedings at 19 ml. The paper I had to sign was for them to be able to fortify your milk. They use Prolacta for preemies to give them more nutrition than what breast milk has to offer since it is only 20 calories. They said that they will let me know if they decided to do that to help you grow.
The doctor said that your head felt good, and he didn't think that it needed to be tapped today. Again, they continue to check your head circumference twice daily, and the doctor checks it every day.
When I did your care this afternoon, I had to change a poopy diaper, and I was happy about it because it was no longer meconium! You keep growing more and more and hitting more milestones!
I am staying home tonight, so Aunt Jess and Grammy helped organize all of your shower gifts. Lots of laundry to do, and I still have to find places for everything!
You are still doing very well, so keep it up. We love you and will see you in the morning!

Sunday, March 20, 2016

Brady's and Desats, Oh My! - March 20th, 2016

This morning when I came in to see you, the resident from neurosurgery came to check on your little head. He felt it and said that it grew 1.5 cm over the last three days and said it felt kind of full, but soft. He said that he would leave it up to the NICU team to decide whether they wanted to tap into the reservoir.
Your nurse overnight made you a nice little sign with your name on it and attached it to your isolette so everyone knows who you are. It was so nice of her! Since it was close to your care time, I was going to do your care and then go get some breakfast. As soon as I did your care, the nurse asked me if I wanted to hold you and of course I did! This would be the first time that I would hold you since the 15th! So I missed out on breakfast, but it was well worth it. It is a little different at CHOP than at Virtua. The nurses have to get permission from the doctor for me to hold you, so I waited until the doctor called back. The doctor said she is a little hesitant for me to hold you because she doesn't want your temperature to drop much, but she said if I really wanted to, I could hold you for one hour only. The nurse said she thought that it would be fine, so I held you for an hour. Periodically she would come over to take your temperature to make sure that you were okay. You were a little chilly the first time she took your temperature, so she put another blanket over you. The next time she took your temperature, she said she didn't believe it, so she tried your other arm. She still said she didn't believe the temperature because you felt warm. However, since it was a few minutes over an hour, she said that it would be best to put you back in your little home. I definitely cherished every minute that I got to spend with you this morning!
The doctors did their rounds shortly after, and they said that they were going to tap into your reservoir. They would take out 10 cc's, and if you were not tolerating it well, they would stop. I went to lunch while they did that. When I came back, they said that it went well and they hoped that the brady's and desats would calm down. I also asked the PA why they switched the prongs and the nasal mask and she said that they switch every time they do your care because they try to prevent the breakdown of the skin. If they left one thing on you the whole time, since your skin is so sensitive right now, it would damage your skin. The doctors also said that they would keep advancing your feedings because you were tolerating them well. At midnight you will be up to 10 or 11 ml (I forget which one).
The doctor came back to see how you were doing since taking out the fluid and when he walked in you had brady'd. He was hoping they wouldn't be as frequent. He left, and I decided to take a nap. While I napped for a short while, you had clusters of brady's and desats. Your PA said that she didn't know why the nurses were documenting some of the "episodes" because they weren't true brady's. She said she wasn't worried about them because that is what preemies do.
Mommy, Mom-Mom, and Aunt Jessica went to dinner and when we came back, you were doing the same thing (brady's and desats). The doctor came in and asked if the same thing happened at Virtua when you had an infection. I couldn't remember if you had a lot of episodes when they first caught the infection, but I know they caught the infection early. He said that he didn't think you had an infection because you were moving all around and not acting sick at all. I told him that at Virtua, all of the nurses and doctors said that if they didn't notice the bands in your blood work that they wouldn't have known you were sick either. I told him about how you had E. Coli sepsis, and he said that he would speak with other members of his team to see what the next approach would be.
Another doctor came in and said that she was going to do blood work to see if they can catch anything. She said since you had a UTI and E. Coli Sepsis, that is what they want to check first, then urine, then CSF, if needed. She said they wanted to do the least amount possible to you. They ordered the blood work for 9 pm when they did your care again. I also asked about your newborn screening and the thyroid panel they said they would do, and they said they have to submit another newborn screening this week so we will know soon if it comes back abnormal again.
For your 9 pm care, I was able to bathe you again! I changed your diaper and you peed on the nurse! I took your temp and did mouth care as they were taking your blood. They said that my breast milk has oxytocin in it, so it helps you with pain. I stayed a little longer than expected, and poor daddy didn't get to go eat what he wanted to. I did feel bad, although he didn't think so.
You are hanging in there buddy. Let's pray for no infection and for a great night! We love you!! Stay strong Mason!

Saturday, March 19, 2016

Surprise Phone Call - March 19th, 2016

This morning we checked out of the hotel early so that we could come see you before mommy's baby shower. When we went to visit you, you were still spitting up. There wasn't really any news from the nurse, which is a good thing!
We left so that I could get ready for my baby shower. I was emotional because you were still supposed to be in my belly at this time. Just thinking about all of the things you were going to get at the baby shower made me emotional as well because you wouldn't be able to use them until you came home - which is still what seems like an eternity away.
I had a wonderful time at my baby shower. We received so many gifts from so many wonderful people. You are definitely loved!! So many people are praying for you. We are so grateful for everyone in our lives.
After the shower we went home to put everything in the house. As we were standing around talking with everyone that helped bring home your gifts, daddy's phone rang and it was a Philly number. My heart instantly sank. Daddy's expression when he was on the phone and lack of speaking made me so incredibly worried. He asked me a question about the ventilator and told the person on the phone about the PA telling me they were going to talk about taking it out next week. After he got off the phone, he told me that they were going to take out the ventilator because they think that is why you are spitting up. You have been on all the lowest settings on the ventilator as well. I felt much better about seeing that phone number come up on the phone! 
Shortly after we came to visit you again. Grammy and Poppy came and then they had to leave by 9 pm so daddy took them home. After they left, we did your care. The nurse told me that she thinks that since you arch your back a lot and she thinks you have reflux. The nurse yesterday said that too. The PA yesterday (when I spoke with her about it) said that all babies have reflux, so they don't do anything about it. They changed your breathing mechanism to the one with prongs (which you absolutely hate), so they said they wouldn't keep you on that for long. Apparently they keep switching them. The nurse also said that you weigh 2 lb, 11 oz! Keep growing buddy!! The neurosurgeon came in to check you this morning and the nurse told us that he said you look fine and still do not need to be drained!
I am staying in a family sleep room tonight at the hospital. At least I get a bed tonight! This next coming week, we were lucky enough to have a friend lend us their apartment in Philly so that we don't have to stay in a hotel or sleep on a chair by your isolette. All of which I don't mind, but it is nice to have a place to shower! (The hospital only has one shower.)
You are doing great! Keep it up! You are definitely living up to your nickname, Mighty Mason!! We love you and can't wait for you to come home to enjoy all of the nice things that you received at your shower today!!!

Friday, March 18, 2016

No Extubation for a Bit - March 18th, 2016

Daddy and I stayed in a hotel last night so that we would be close and so that I could be within walking distance to you today. We walked over to see you this morning and they said that your head circumference had grown. I figured that the doctor would have to drain some fluid today. Your neurosurgeon (who is hilarious by the way) said that your head felt nice and soft like it should. Later, I met with the PA and I had asked her if they would have to drain any fluid because your head circumference had grown and she said that she spoke with the neurosurgeon and they both agree that everything looks fine and we have to remember that you are also growing so your head circumference will get larger. She also said that although the nurses try really hard to measure the same exact spots, they don't always measure in the same spots so the circumference could differ there as well.
Daddy had to leave to do some work, so I stayed to keep you company. The nurse had told me that the doctors wanted to extubate you today. After the doctor told her that, you had 4 episodes, so they decided it would be best to keep in the ventilator and we will talk about a plan of action on Monday. They said it would be best to keep it in rather than take it out and need to put it back in if you did not do well.
When the PA came in, I also asked her about you spitting up. Three times while I was watching you today it would look like you were choking and then you would spit a little bit up. She was not concerned with you spitting up at all because she said it is less than one cc, and she said it could be the ventilator irritating you. She said it could be reflux as well, but she thinks it is just the ventilator. She still thought it was best to keep the ventilator in. I hated seeing any of this today. I did clean you up whenever it happened. You are still getting fed and they are still increasing your feedings.
When we were still at Virtua, I asked them about a letter I had received in the mail about abnormal newborn screening results. At Virtua, they told me that they were going to order more lab work on your thyroid. I guess that got lost in the mix. When I told CHOP last night, they were ordering the labs for you. The PA said that they were doing those today.
Tomorrow is mommy's baby shower. It just doesn't feel right that you are not in my belly. However, I am sure you will get so much stuff and you will love all of it! I can't wait for you to be able to come home and enjoy everything. Mommy has a lot of things to get ready, but I do have a lot of time unfortunately.
I do miss the nurses at Virtua. They just aren't as personable here. I know your nurses from Virtua miss you as well!!
I am going to try and go to bed early tonight before I have to wake up again soon. We love you with all our hearts Mason. We will see you in the morning!

Thursday, March 17, 2016

Happy 3 Weeks Mason! - March 17th, 2016

I slept at the hospital again so I only woke up a couple times when you brady'd. Not nearly as much as the previous night!
One of the doctors came in to check on you and said that your head felt nice and soft and that you did not need it drained today. They kept taking your blood for your blood gas, and they were able to turn down your ventilator settings a few times. They also said that you should not need another blood transfusion anytime soon. Your heart rate has been staying in the upper 140's, which they said was good. They said that your heart rate before was most likely in the 180's because of the pressure on your brain.
When the doctors did their rounds today, they said that your weight was 1.2 kilos and that you were doing good. After rounds, one of your doctors came back and said that after looking at an X-Ray, one of your lungs was working better than the other. She thought that was because you had some mucous in there so they suctioned you out a few times. They said you sounded much better after doing that. A little later you had a million brady's in a row - they think it was because something wasn't hooked up right and wasn't catching up on the machine.
You started your feedings again this morning, and after two of your feedings you vomited. They think you may have reflux or it could be that the tube isn't in the right place because you like to pull on it. They were going to call the doctor and see what the doctor wanted to do because they were supposed to increase your feeds again.
Overall, the doctors sounded like you were doing well. I am hoping the vomiting is just from having surgery or from you not being used to eating again. I will speak with the doctors tomorrow morning to see what is going on there.
Mommy and Daddy left to have dinner with family, and we are actually staying in a hotel room tonight and tomorrow. Mommy was told that she looked exhausted and needed to get away for a little bit. We will see you early tomorrow buddy! Happy 3 weeks and happy St. Patty's day! We love you!

Wednesday, March 16, 2016

Day of Surgery - March 16th, 2016

Since I slept in your room last night, I saw that you brady'd so many times. I couldn't even keep track. Some you came back on your own, and there was once instance where they had to put something up to you so that your heart rate would come back up.  Giving me so many heart attacks already!
This morning I kept waking up to the X-Ray technicians putting the shields on me as I was laying down next to your isolette. The first time they woke me up to do it, and the next two times they just put in on me as I was sleeping (I obviously woke up once they placed it on me). They kept wanting to make sure that your ventilator was in correctly before your surgery.
I figured it was time to wake up since so many people were coming in and out of your room, so I got up and got ready for the day. Your surgery was scheduled for 9 am but the nurse came in and told me that they moved it to 8/8:30 and to call daddy to let him know. The anesthesiologist came it to talk to me and asked if I had any questions. I did not. She said she would be back if I thought of anything. Daddy came and grammy and poppy and they got to say hi before you had your surgery. Daddy and I stayed behind to speak with the doctor before you had your surgery. (By the way - they did your surgery in your room in the isolette!) He said that the procedure should take 20 minutes and that you would wake up a few hours later.
We waited in the waiting room and the doctor came out and told us that the amount of fluid you had was not as bad as he thought, and he said that the bleeding was a yellow color which was a good thing. He said that he took out 10 cc's and he also gave us your hair from your "first haircut." He said that he thinks you will need a shunt once you are about 3.3-4.4 lbs. Your stomach also has to be doing well for the shunt to be placed. He said that the reservoir would either have to be drained every day, every other day, or maybe even every week. He wasn't sure yet, and would see how you were doing tomorrow. Your head circumference did go down from 26.5 to 26.25 after the surgery. They will be measuring daily.
It took you a while to wake up, but once you did you were definitely back to normal. You were kicking your legs all around and moving your arms all over. Your favorite is when you have both arms near your face and one of your legs kicked out of your snuggly! You are way too cute!
Mom-mom, pop-pop, grammy, and poppy came to see you after your surgery. We are only allowed to have four people at the hospital and their names have to be on our list (no switching out names) until March 31st. They won't even let people who are not on the list on your floor in the waiting room.
Since your surgery, I haven't seen you brady at all. I will keep watching you tonight, but I am hoping since some of the pressure is off of your brain that the brady's stop along with the vomiting. Your heart rate has been in the 150's most of your stay here at CHOP. They plan on starting your feeds again in the morning, so lets see how you do then.
You did an amazing job today. So many people have been praying for you buddy! So many people love you and support you in so many ways. We love you and are so proud of the little fighter that you are!!

Tuesday, March 15, 2016

Mason's First Car Ride - March 15th, 2016

Where to start. Last night was pretty rough on mommy. I didn't want to talk to anyone because I needed to process everything that was going on myself. I just got comfortable at Virtua and now we were having to move to a whole new hospital that was not 10 minutes down the road. This meant new nurses and doctors as well.
When I arrived this morning, there was a bag with your little glasses, pacifier, diaper, etc. and a note saying that they thought I would want some of your things which automatically made me start crying. All of these little notes and "gifts" that the nurses left were so thoughtful and made us feel so at home. I know that is something that we will miss, and I know Mason will miss his dream team!
The nurse let me change your diaper and take your temperature. She also asked if I wanted to do some kangaroo care and of course I did! As soon as we got you all settled, the doctor came in to let me know that CHOP would be here in 30 minutes. I cherished every single second with you not knowing what would happen next. Daddy came as soon as we knew they were on their way. As we were spending some cuddle time together, about 5 people came in and filled the room. It was very overwhelming, especially knowing you would be transported in an ambulance. That made me so nervous. As they transferred you into their little isolette, I cried. I didn't want to leave a place I was so comfortable at. Some of the nurses came in to say goodbye, the respiratory therapist and the PA also came in to say goodbye. As we were leaving, I saw the LC and another nurse that took care of you and again started crying because everyone was so sad that you were leaving. As we walked out of the NICU, another couple saw me crying and said that they had a grandchild at CHOP. The one lady hugged me and let me know that you would be just fine.
We followed the ambulance to CHOP, and a friend of ours called in a police escort to get you to the hospital faster. Your first car ride in an ambulance, and we even ran a few red lights! So exciting for your first ride! When we arrived at the hospital there was a little confusion as to where we were supposed to go, but we made it to the NICU. You do not have your own private room here, but you are doing just fine.
The doctor ordered an X-Ray and another ultrasound. No one came in to talk to us about the results, but a doctor did come in to talk to us about the surgery you would be getting in the morning. I was kind of shocked that you would be getting surgery so soon. However, we feel very comfortable with the surgeon. He will be putting a reservoir in so that they can take out the fluid daily. He also showed us what a shunt was just incase you would need it in the future.
Mommy is staying overnight in the hospital tonight with you and daddy had to go home (only one parent is allowed to stay with you). Your surgery is probably going to happen around 9 or 10 am because the doctor has another surgery to complete right before you.
I am not looking forward to tomorrow morning, as I know I will be a hot mess. I know you are in the best care, and I am hoping that I somehow gather a lot of strength for this procedure. I know you will do well and you will feel so much better. I am hoping for a speedy recovery and I know you will be just fine.
Mommy and Daddy love you!!!

Monday, March 14, 2016

Just When You Think Things Can't Get Any Harder - March 14th, 2016

When I came in this morning, the nurse told me that they were holding your feeds because you started throwing up at midnight, and then again after your next feeding. I did not want to do Kangaroo Care since you were sick (of course I really wanted to do it, but I didn't want to make you feel worse). She had changed your diaper at 8:30 am instead of 9:00 am because she was already in your isolette and wanted you to be able to rest after.
This week we were told there would be a new doctor on, as the doctors rotate on a weekly basis. Our primary doctor stopped by and asked if I had any questions and I did. I asked what would happen if you did not stop throwing up and she said that they stopped your feedings so that you would stop. What came next I was not ready for at all. She said that the doctor that was on today would most likely order an ultrasound today instead of later in the week because throwing up and having episodes are symptoms of pressure on your brain. She told me that the doctor on today would explain everything to me.
As I was waiting for the doctor to come around, I was hungry and tired so I went to the Ronald McDonald room to grab a snack and some coffee. When I came back to your room, the doctor was there and started talking to me about what was going on with your care today. Again, nothing that I was prepared for. She said that she wished she wasn't meeting me for the first time and having to tell me any of this. Anyway, she said that over the weekend your head circumference grew 1.5 cm which is way too fast of a growth for a preemie (or any baby for that matter). She said that she had already notified CHOP about you and that there was a possibility of you being transferred there for the surgeons to evaluate you. She ordered a head ultrasound for you and told me the different options that the surgeons would think about regarding the fluid in your brain. One of them was a LP that they could do in the NICU. If it helped you, they would do it again if there was increased pressure. If it did not help you the first time, then they would not do it again. Another option would be something called a reservoir to drain the fluid. They usually do not put a shunt in until babies are larger, so they would try other avenues before placing a shunt. She also said that another doctor would be speaking with us about everything.
As I was on the phone explaining stuff to daddy, the other doctor had come in to check on you. He told me not to get off the phone. After I was off the phone, he came in to talk to me about you. He basically said the same things as the other doctor, and also said that he would be doing the LP on you at 11:30 am. He said that the procedure takes about 15 minutes, and about 14 of those minutes are just getting ready and cleaning up. He also said that he would like to take about 10 cc's of fluid because he knows that babies can handle that. I told daddy about it and he said that he would come to the hospital to get the results. I went back to the Ronald McDonald room and had a snack and some coffee since I knew it would be a very long day for us. Daddy came and I explained everything in more detail to him. We came back after about 30 minutes had passed and sat with you. We waited for the doctor and he said he was only able to get 1 cc of fluid out, which meant that your brain was not communicating well with another part of your body (I forget the part he said). He then had the ultrasound done and as we were waiting for the results we stepped out and got some lunch since we had not had anything to eat all day. When we came back the first doctor came to speak with both of us. She told daddy about everything she explained to me earlier in the morning. She then said that you would be transferred to CHOP in the morning to be evaluated further by the surgeons. She said that they might not do anything until you are off of your antibiotics on Friday, or she said there is something they can do while you are still on your antibiotics. In any case, she said she has no idea what they are going to choose to do, but she just wanted to prepare us for what may come. She said sometimes babies are sent over to CHOP and just placed under observation and then go back to the NICU. We asked if you would be coming back to the NICU after the surgery (if you had to have surgery) and she said it is a possibility.
We came again for your 9 pm care, and I really wanted to do some Kangaroo Time because I have no idea when I will get to hold you again. This was my 10th day in a row holding you, and my 13th time holding you ever. You had quite a few episodes while on me tonight. The LC came in to speak with me and she said she was coming in because we were being discharged in the morning. I had to take home all of the milk I pumped for you. The doctor came in so daddy could sign a paper and we asked a few questions. Our nurse told us that we had to pack everything up and bring it home. This was such a difficult thing to do. I felt like I was leaving the very place that I got so comfortable with. I loved the NICU nurses, as they treated you like their own. This was my home away from home and your first home. Just thinking about having to transfer you to another hospital and possibly having surgery just breaks my heart. I wish I could switch places with you. We are looking into places for me (possibly daddy) to stay in Philadelphia so that we are close to you while you are at CHOP. We will be there every step of the way buddy.
One positive about today was that you lost your umbilical cord. You now have a cute little belly button!
Mommy and Daddy love you so much - you are our little hero. We know you are going to pull through. Stay strong, Mason. We love you!

Sunday, March 13, 2016

Always Keeping Us on Our Toes - March 13th, 2016

This morning I did kangaroo care with you for about an hour. You looked so comfortable, I hated having to put you back into your little home!
The doctor came in and said that you were getting a break from testing and I was happy to hear that. I asked her about your head circumference because it was .5 cm larger than the previous night. She said that if it grows 2 cm or more during a one week period, that they will most likely have to talk to a surgeon about what they wanted to do. Lets hope that we don't have to worry about that!
The nurse this morning said that they are going to try out not using the tortle because they think that may be the cause of some of your brady's. When we came in for your 3 o'clock care, she said that you have been doing well without it. I felt a little relaxed since you were doing okay today.
...And then we came tonight. The nurse said that you threw up a couple times and that your belly was 1.5 cm larger than it has been. She called the NP who said that she wanted to get an X-Ray again just to make sure that nothing was going on. She also said to hold your feeding for now. The results came back and it was still only air in there. When they were doing rounds, the nurse asked whether they should start feeding you again or not because of you throwing up. They said to keep your 5 ml feed. Hopefully you do not get sick again. Always making mommy and daddy worry!!
After that stress, we stayed and spoke with two of our favorite nurses. It definitely relieved some stress, so I am glad that we stayed a little longer than planned. Plus, we got to spend more time with you!! See you in the morning little guy! We love you!

Saturday, March 12, 2016

More Firsts - March 12th, 2016

This morning when I came to see you, I walked in and the nurse said to get started on your care (I love when they do that). She asked me if I wanted to do some kangaroo care and of course I did! I held you for about 2 hours. You had 5 episodes while cuddling, and 14 episodes over night. They said they would continue to watch you.
I did not go to the 3 pm care, as I took up mom-mom on her offer to get my hair done. Sometimes it is good to get a little break.
I got a letter in the mail today from the Department of Health stating that you could possibly have a condition called Congenital Hypothyroidism. The paper stated that the NICU received a copy of the results and no one has said anything to us about it. I asked tonight and they said that since this letter, they had tested you again and the doctor said she will call tomorrow to see if she can get the results and if not, she will make sure they get the results on Monday. The nurse said that if it comes back positive again, they will most likely do more lab work on your thyroid.
When we came for your care at 9 pm, your curtain was closed and there was a sign that said "Do not enter, sterile procedure" so of course not knowing what was going on I immediately got nervous. We went to sit in the Ronald McDonald room and the nurses knew right were to find us when they had finished. They said that they had to redress your PICC line. Apparently the redressing yesterday wasn't good enough, or maybe they have to redress it every day. Not sure.
When we came back in, I did your care. You are still taking 5 ml of mommy's milk, and if you are still doing well with it, your feedings will increase tomorrow. The nurse asked if I have been able to give you a bath yet, and I said no but I would love to do it! So I gave you a bath for the first time. The little things make me so happy. Changing your diaper, taking your temperature, doing colostrum care, kangaroo care, and now bathing you - are the only things that I can do right now to help you and make you feel more comfortable. I wish I could do more. While bathing you, you decided it would be funny to pee on me!  I am sure that will not be the only time!
The nurse was very comforting tonight. After asking her about the Congenital Hypothyroidism, she said to try not to worry about it until the results come in. She told me to go home, have a glass of wine, kick my feet up, and to relax. She said that usually there are a ton of ups and downs right now, but eventually you will start to get better and we will have a lot more of the up days. It is so nice to have the staff sit there and comfort you when they realize that you are having a tough time with the news that you keep receiving.
Your head was measuring a tiny bit larger than yesterday, so she said she would notif the doctor when they did rounds. Not sure what that means, but once I find out, I will update everyone.
I think that is all for today. You need to breathe Mason! No more episodes please!! We love you buddy!

Friday, March 11, 2016

Not a Good Day - March 11th, 2016

So this morning we came to see you and found that there was a nurse taking care of you that we have not met before. We are always open minded about new nurses. However, she told me that she would be changing your diaper today which made me a little upset because that is the only thing that I am able to do as a parent. I got tears in my eyes, but tried not to let it bother me. As she was doing your care, I didn't like the way she was doing things. Maybe it was just me being upset about not being able to change your diaper. Later at 3 when I came back she didn't even do your care - she left for 15 minutes and then when she came back she was trying to gather up nurses to help redress your PICC line. She told me I had to step out while they did that so I just went home. I was told that they usually do those types of things between the hours of 4:30 and 6 and tell us not to come between those hours for that reason. Tonight when we came in, I saw that your pacifier (which was too big for you) was in your little bed and shoved in your little armpit. Your prongs to your CPAP had blood on them (they have never had blood on them anytime that I have been there) and I just didn't get a good vibe from that nurse. Even the nurse on tonight said that your home was a mess! Not a fan. At least when we came back tonight I was able to change your diaper and take your temp., and most importantly, do some kangaroo time!
This morning the doctor came to talk to us as she always does. She asked if we had talked to anyone about the results from the ultrasound and we told her the doctor last night said the bleeding stopped and that there is fluid but nothing we can do right now about it. She then said "from the last ultrasound, it didn't just get worse, it got a lot worse." She then showed us the ultrasound and compared it to the previous ultrasound. She was right, there was a lot more fluid than the last ultrasound. She said that you had hydrocephalus. She said there is nothing that they can do right now. She said your little head would expand to relieve any pressure and they would be measuring your head everyday to see if there were any changes. I asked when they would intervene and she said that they like to wait a while because if they insert a shunt now, you will grow and have to have another surgery to fix that and they do not want to have to do multiple surgeries. Daddy asked what the long term effects could be and the doctor said "good question." She said that anytime there are complications, it increases the chance of something being wrong in the future and reminded us that you have had a few complications already. So the likelihood of something being wrong in the future is increased already. She said that you could have cerebral palsy, learning disabilities, problems with speech and hearing, etc. Mommy cried. Daddy told me that since we don't know anything yet, not to get too upset until we know more information. The doctor also said that we won't know what the long term effects would be for awhile, and some do not show up until you are of school age. Until then, they will be doing an ultrasound every week to follow what is going on.
In a couple weeks you will have an eye exam to make sure everything is okay there. You are back off phototherapy. They are starting your feedings back up at 5 ml every 3 hours.
That is about it for today. I am so happy that I got to have some kangaroo time with you tonight because it was really needed after hearing the news of the ultrasound this morning and from the added stress of having a nurse that decided she was going to do your care. Anyway, mommy and daddy love you. Keep fighting Mason!! You are our hero!!

Thursday, March 10, 2016

Just breathe! - March 10th, 2016

This morning the doctor decided to take off the breaths that the CPAP was giving you, so now you are just getting a constant flow of air. You have had a few episodes, but not as many as before. They said if you continue to have a lot of episodes, they will add the breaths back in. Let's pray you don't forget to breathe at all buddy!!
I was able to do your care and then hold you from 9:30-11:45! Lots of cuddle time this morning! It seems that when I hold you your heart rate is better. I wish I could just keep you in my arms all day!!
Since I was at the hospital all morning, I decided to go home, eat and rest and make some phone calls that I needed to make for your care and skip your 3:00 care. The nurse said they may do your ultrasound then anyway, so skipping it was a good idea.
We came back at 8:00 and then Mom-Mom and Pop-Pop came to visit you. We got the results from the ultrasound of your brain. There has not been any new bleeding (phew!) but your ventricles are getting bigger. The doctor said that there is nothing we can do right now, we will just get another ultrasound in the next week or so. She said if they keep getting bigger, you may have to have surgery, but we are not there yet. Let's pray that they don't get any bigger.
You also had the PICC line in today, and she said the perforal IV will come out within the next few days, they just want to make sure that you do not need another blood transfusion. The blood is not able to pass through the PICC line, so they would have to do that through an IV. She also said that she hopes the phototherapy will come off tomorrow. Lots of on and off with the phototherapy!
Other than that you are doing pretty good. There are so many people praying for you all over the place! So many people love you and want you to continue doing well so that you can grow big and strong and come home soon!! Speaking of growing big and strong, when the nurse weighed you today, you weighed 2 lb, 4 oz! Now 2 ounces above your birth weight! Keep growing, Mason!!
Mommy and Daddy love you and can't wait to see you in the morning!!

Wednesday, March 9, 2016

Too Many Ups and Downs for One Day - March 9th, 2016

This morning the nurses and doctor came around and we listened as they did their rounds. They said that you were going to have a PICC line in today or tomorrow as well as another brain ultrasound today or tomorrow. All of your cultures have come back negative so far which is great. They wanted to make sure that you peed in an arc so they told me to keep watching. (I stared at you for what seemed like forever, and as soon as I walked out of the room they said you peed - in an arc like they wanted!)
The nurse that had you today told us that you only had three episodes last night and haven't had any this morning. Your belly was a little full so the nurse was putting  an empty tube on your feeding tube so that the air could get out. Last night, your heart rate was in the 190's so they were going to watch it. So far this morning, your heart rate was in the 180's.
When I came back at 3, I was going to do Kangaroo Care. When I got there, I did the usual and then the nurse said that she was going to get the doctor because his belly looked really full. The doctor came in and checked your belly and said that it wasn't okay. She said that when she pressed on it, it was tender and that your heart rate was high, all signs that something was wrong with your belly. I asked what could be causing it, and they didn't want to make me nervous so they told me that they would let me know after they did an X-Ray. I had to leave the room while they did the X-Ray. The doctor also wanted to do blood work to see what was going on. She said the doctor at night would tell me the results.
I stayed there and daddy came as well. Before he came, the doctor came in and said that your belly just looked full of air. Nothing else looked wrong. They stopped your feeding until at least tomorrow. Your blood work came back and your hemoglobin was very low so you got another blood transfusion while we were there. Your lab work also showed that you needed to be back on the phototherapy. You sure do love tanning!
Since you were bothered enough at 3, I did not do Kangaroo Care. I figured I would give you a day of rest. However, when we came back at 9 pm, the nurse said it would be good for him to do some Kangaroo Care, so we did. She purposely faced me the opposite direction of your vitals since I couldn't stop staring at your heart rate going up and down so much. She said that you notice when I am stressed and Kangaroo time is not supposed to be stressful. While we cuddled, daddy said that your heart rate went down to the 160's. It is amazing how that works!! I wish I could snuggle you all day!
Well, that was enough ups and downs for one day. We love you and are so proud of you for staying so strong!!

Tuesday, March 8, 2016

No More Ventilator - March 8th, 2016

This morning mommy came and did some Kangaroo Care for a while. I did the usual diaper change and temp. and listened to the Dr. and nurses when they did their rounds. The last two cultures came back negative which is great. Your belly is 2 cm larger than what it was on the last measurement, but the doctor and nurse said that your belly looks, sounds, and feels like it should. They said that they would keep an eye on it. I asked what a reason could be for your belly to be bigger and they said that your ventilator has a leak so that could be a reason it is a little bigger. Your doctor wants me to change your diaper and keep it open until I leave to see if you pee in a stream or trickle. They want to make sure that you pee in an arc! The doctor said that she is going to take you off of the ventilator today as well.
Later when I came at 3 pm, I did the usual. This time when I changed your diaper, you decided to poop as I was wiping you. I'm sure that won't be last time you do that!! You were off of the ventilator and on the CPAP. You had a few episodes, so they said that you would be put on the CPAP with some breaths to help you. When we came later that night with mom-mom and pop-pop, our favorite nurse said that you have only had a few episodes since she had been there.
On Thursday you will have an ultrasound of your brain. Other than that, you look pretty good! You were all cuddled up on your tummy tonight, you looked so comfortable! I read you a book before we left and told you that I would be back tomorrow.
We love you Mason, stay strong and keep breathing buddy!!

Monday, March 7, 2016

Back Up to Birth Weight! - March 7th, 2016

Last night the nurse was saying how we needed to put your name on the isolette so that everyone would know your name. This morning we came and your name was on the isolette! That was so nice of her!
This morning we came in and they took off your phototherapy light. They have to check your levels again tonight so you might have to go back on it, but for now, no more tanning! Your ventilator may be coming off within the next few days. Mommy and Daddy are a little nervous about that. Your PICC line may go in soon as long as the infection is gone. You are supposed to have an ultrasound tomorrow, but no one really knows when. You had a LP today and they were able to get a little bit of fluid, just enough for a culture.
The nurse told me when I came back that you had kicked your ventilator tube out! Impressive - but we still need that to breathe buddy! All the nurses comment on how active you are - always kicking and moving your little arms all over the place!
Tonight we got to do Kangaroo Care again, but our time was cut short because you brady'd. You had a lot of stuff in your lungs, so they think that is why.
They weighed you tonight and you are back up to your birth weight! You are now eating 7 ml of Mommy's milk!! Your belly looked full tonight, but they checked you and it seems like everything is fine. They are going to keep an eye on it.
Other than that today was pretty uneventful. Lets try to keep it that way Mason!!! Mommy and Daddy love you buddy!!

Sunday, March 6, 2016

What Infection? - March 6th, 2016

When we went at 9 am for his care, the doctor told us that since you had an infection, they wanted to take a lumbar puncture to rule out possible meningitis. She said that if they didn't get the fluid the first time, they would not keep doing it, they would just wait another day to try again. She went over all the risks with us, and asked us to sign a consent form. (I hate having to sign these consent forms - I feel that if anything ever went wrong, that it would be my fault because I signed the paper allowing the doctors to complete the procedure!) We would find out the results about one hour after the LP was complete. Depending on the outcome, you would either have antibiotics for 7-10 days or 14-21 days. We told her that we would be back at 3 pm to find out the results. The good news is that she said that the only reason she knew you were sick was from the blood work, otherwise she said that you do not look or act sick at all. Usually, when preemies are sick, they just lay there and don't really move too much. She said that you are feisty and move around a lot, and don't act sick at all. She then whispered "I don't think he knows that he is sick, so don't tell him!"
In addition to my usual duties (temp., diaper), the nurse let me feed you and give you a paci. It was amazing to see you actually sucking on it with the tubes in your mouth. I didn't think that was possible! Since you eat through a feeding tube, I got to hold the syringe up while gravity moved the milk into your belly. Speaking of milk, you are doing great with eating! You started at 1 ml every 12 hours, then 2 ml every 3 hours, then 3 ml, 4 ml, and 5 ml. They keep increasing the amount you eat every 3 hours and decreasing the amount of fluids that go through your IV. We are so proud of you! You are starting to eat like Daddy!
We went back for the 3 pm care. I was so nervous about hearing the results. The nurse told us that they were unable to get the fluid, so they would not go in again today. They would try again tomorrow. She said that you are moving around a lot so they think that they caught the infection in its beginning stages. (The lab hasn't called the nurses about the culture they sent out yesterday, so they say that is a good thing. It is possible that it is now negative!) Thank goodness!
Uncle Ryan and Mom-Mom came to visit you. Your cousin Cal was here as well, just couldn't come to the hospital. They got to see how good of a fighter you are!
The nurse told us that you now weigh 2 lbs! back up 2 ounces, and only 2 more until you are at your birth weight! Keep eating buddy - you are going to grow big and strong!
At 9 pm, Mommy came by herself and did some Kangaroo Care. I held you for about an hour and 40 minutes. You were so comfortable and all of your numbers looked good while you were on my chest. After putting you to bed, I stayed for a little bit to read to you. After I read and was getting ready to say my goodbyes your heartbeat went up to 207 and you were squirming all around. I had to stay until your numbers looked better, and within just a few minutes you calmed down. Oh - you are up to 6 ml of milk!! Keep going buddy!
Tomorrow you should have another LP and Monday or Tuesday, another ultrasound of your brain. I am hoping they do everything tomorrow so that you can rest on Tuesday.
Keep fighting Mason! You are doing such a great job. Mommy and Daddy are so proud of you!!

Saturday, March 5, 2016

Amazing NICU Nurses - March 5th, 2016

Daddy and I came early this morning because we had a few things going on starting at 8 am. When we came, Margaret was still there. She had left us a letter letting us know that she read you 7 books and took great care of you. She said that although you had a rough day yesterday, that today is a new day. She even left pictures for us with quotes on the back of what you were thinking at the time!
Margaret told us that you did indeed have an infection and that you were on three different antibiotics for it. They would narrow it down once they knew what the infection was exactly. The doctor told us that usually preemie get really sick quickly with this infection and she was happy that you weren't showing any signs of an infection. She thinks that they caught it super early which is great! Your perforal IV is in and everything else looked pretty stable for the day. Your phototherapy had to be turned back on today.
At 3 pm when we came, I got to change your diaper and take your temperature (better than yesterday). I decided to do Kangaroo Care now instead of later because usually I am really tired after your 9 pm care. You looked so comfortable laying on my chest. I wish I could have just stayed there forever with you. Something new I got to try was taking you out of the isolette on my own. They said it causes less stress on you than having the nurses take you out. I did notice a difference! Putting you back in the isolette was a bit more difficult just beause of how small and fragile you are. Daddy read to you while we suggled. The doctor also informed us that you were doing so well on your feedings that they increased you from 2 ml every 3 hours to 3 ml every 3 hours.
Even though I was exhausted from not getting as much (or little I should say), sleep as I usually do, I wanted to come and see you again. When we got there, they had changed your diaper and taken your temperature. I am not going to lie, I was a little upset. That is the only thing I get to do and look forward to every care session. You were much more awake than usual. When I started talking to you, your eyes went right to where I was standing. I think you know Mommy's voice! I read you two books before staying goodnight and then we left.
Keep fighting in there little buddy! Mommy and Daddy love you!

Friday, March 4, 2016

All Around Rough Day - March 4th, 2016

This morning when we came to visit you, I knew we wouldn't be able to do Kangaroo Care because you had a long day ahead of you. (That is why I cuddled you twice yesterday!) We figured getting your PICC line in, belly button line out, and your ultrasound would be too much for you already. The nurse let me change your diaper and take your temperature. Your temperature was 99.7 and when I told her, she was not concerned. I take your temperature every day and it has never been that high - ever! Anyway, she told us that the ultrasound was ordered and that you would have the PICC in later today. When she came back in, she told me that the lab called and that your HH was low so you may need a blood transfusion. She said the doctor would be in to speak with me.
Daddy had to go get a haircut so I stayed to read to you until he came back to get me. As the nurse was doing what she had to do, alarms were going off continuously. Your heart rate went from 180 to 85 to 202. Knowing that I can only sit there and there is nothing I an do but watch and pray absolutely kills me. I cried because I have never seen your heart rate so high and watching it go all over the place and listening to all the alarms on the machines going off killed me. In the midst of it all, the doctor came in and quickly left. The respiratory doctor cam in and took a look at you and the machine and told the nurse that you looked uncomfortable and she disagreed. When he left she told me you were comfortable and although the doctor was respiratory, he didn't know what he was talking about.
The PA came in to check on you and she saw me sitting the crying. She came over and sat down next to me and asked what I was crying about and I told her that I have never seen your heart rate so high and then quickly drop. She told me that especially in preemies and even in full-term babies that when they get upset, their heart rate can go into the low 200's until they calm down. She said that they have monitors out in the hallway where they sit and that they were watching hi closely. She told me that I was a great mom and that I was strong and that they were going to take very good care of Mason. She was so caring and thoughtful to take a few minutes of her time to sit and reassure me that everything will be okay.
When Daddy came back from his haircut, I informed him or everything that happened while he was gone. The doctor came in and said that he would need a blood transfusion today and she was going to do lab work to see if he has an infection at all. When we would come back at 3 pm she would tell us the results of the brain ultrasound and the blood work.
At 3 pm, your care was already done. The nurse told us that you have been making her earn her money today. She had spent a lot of tie in your room while we were gone.
The doctor came in to tell us what had been going on while we were gone. She started by showing us the ultrasound of your brain. She put the new pictures next to the ones you had last week to show us the differences. Last week you had a grade 2/3 bleed on one side and a grade 2 on the other side. Today, they were both grade 3's. There was some fluid built up pushing on your ventricles. She said that you would have another ultrasound on Monday or Tuesday to see more of what is happening. If there is more fluid, it could cause pressure on your brain so surgery might be necessary. However, she said it is still too early to tell.
As for your blood work, you have an infection somewhere. She thinks that it is a coag neg. staph, so she was going to hold off on getting the PICC in today and go ahead and take out the line in your belly button. She started you on a general antibiotic to be proactive until a culture came back to see what the infection was. Once she gets that information she will put you on a more specific antibiotic. She said that you don't look or act like you have an infection, so I guess that is a good thing. The PICC line won't go in until the infection is gone. For now, you have to have a perforal IV in your arm until the infection is gone.
When we were there, you were almost finished with your blood transfusion. The nurse said that while we were gone and they had to bother you, you didn't brady or desat like earlier. She then said that the reason you were having a hard time earlier was because your ventilator was too far down (which is probably why respiratory said that he was uncomfortable).
The social worker came in today as well to talk to us and make sure that we were doing okay. She gave us information on SSI and Medicaid and said that you qualify. I'm sure we will need any help we can get since you have a lengthy stay ahead of you!
As you can see it was a very rough day for all of us. The doctor said that it usually takes weeks for preemies to start to level out. So for now, there will be a lot of ups and downs and to take it one day at a time. We decided that you needed a break tonight so we did not go to your care at 9 pm. We knew that the nurse we loved would be on and we know that she will take great care of you and give you the rest you need to grow big and strong! We love you so much and can't wait to see you in the morning!