Thursday, August 25, 2016

My first... - August 22nd, 2016

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

ER Visit - August 21st, 2016

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

Clearance! - August 15th, 2016

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

Thursday, August 18, 2016

Where Did Mommy Go? - August 11th, 2016

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

Busy Day - August 10th, 2016

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

Tuesday, August 9, 2016

Progress - August 9th, 2016

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

Lactation Appointment - August 5th, 2016

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

Thursday, August 4, 2016

Outcome of Procedure - August 4th, 2016

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

Tuesday, August 2, 2016

Procedure - August 2nd, 2016

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

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