And there will always be a part of me, nobody else is ever gonna seebut you and me, my little boy*

*I changed the lyric from girl to boy. I just had to put that out there :)

Part 3

As you will notice looking at pictures of Brennan, he has a bunch of turbans on his head. They are supposed to have them after surgery for a day or two, however our stubborn little man did NOT like them, and would fight and fight until he had made them come off. He got rewrapped about 3 or 4 times before they finally gave up and left them off him. He was very fiesty when he had the turbans on, as well as the ports and the lines connected to him. By the third morning, he was pretty much disconnected from everything, because he kept kicking them out, and he was much happier once they were gone.

(Also, as you will notice, his face started swelling up, especially the right side, since he was laying on that more than the left. His right eye ended up swelling completely shut, and the left one would barely open by the end of the second night. But the swelling started going down on the third day.)

This kid got rewrapped a lot!

The first night went fine. He had his transfusion and he slept as well as can be expected. He was eating small amounts, so he would get hungry a little more frequently, but once he ate he would typically fall back asleep. Our sweet pediatrician came to check in and visit us that night too, and it really helped calm me down. She was apparently checking in with Dr. Reisner a lot too, so she was keeping good tabs on our little man. Heather and Ryan came to see us that night, and it was really nice to have a friendly face there! I was really grateful for their visit. Jacob can sleep anywhere without and problems, but I am not blessed with that ability. Thankfully, when you are in the PICU, you can reserve a sleep room, which is a small little room with a couch/bed thing and a lamp in it. I slept for a few hours in those both nights, and was able to get some decent shut eye. The first morning was ok for little man. He had been getting morphine every 4 hours, and by the second day he really only had one or two doses, and switched to mainly Tylenol. He also made friends with his nurses - he started smiling some and as long as he wasn't being poked or prodded much, he was pretty happy.

Both Dr. Reisner and Dr. Williams came to check on him that morning, and they were both pleased with how he was doing. They did have some issues with the line that was in his head collecting blood drainage. It had gotten clogged so he ended up bleeding out more than they expected, but once they got the line clean it started working fine. And it didn't cause any issues, just was a bit messy. They also took his catheter out that morning, so we got to start changing his diapers again. It was kind of nerve wracking because I didn't want to hurt him and he doesn't love getting his diaper changed. The nurse helped me with this first one (he was still hooked up to some much, it was a little tricky) and I swear it was like I have never changed a gross diaper before! She was nice about it, but I felt pretty foolish.

As the day progressed, he was slowly acting like his normal self. He still had a ways to go, but he was making progress. That afternoon, I FINALLY got to hold him!! I was so excited. I was also nervous! He was still hooked up to some stuff, so it took a little maneuvering, but I got to hold my little guy. I held him for about an hour and twenty minutes. I felt so bad putting him down, but since he couldn't move around much, I had to stay in the same position and my back, arm and bum were numb! And I had to use the ladies room...haha. His disposition was a lot happier after I held him, and that made me feel so good! I felt really helpless through this whole process, so seeing him brighten up a little after being held was so wonderful. I love my little chunk so much!!

This is what the minimally invasive approach looks like. His incisions look really good!

FOOD!

When Dr. Reisner came for his evening rounds, he decided that Brennan should stay in the PICU one more night, just to keep an eye on him. Nothing worried him, he just did it as a precaution. Brennan was doing pretty good, and he got some decent rest that night. So did Jacob and I.

The next day was pretty uneventful! Brennan continued to do well, and was SO happy when Jacob got hold him! My mom came by for a visit, and it was great to have her stop by and see us! We also got moved down to the floor and out of PICU. The move didn't happen until that afternoon, but it was nice to have more privacy. We had an incredibly positive experience in the PICU, and the nurses and doctors that worked there were absolutely wonderful. I was so grateful for each of them and all they did to help little man. Before we left PICU, Dr. Williams came and took the line out of his head since the drainage had pretty much stopped.

His swelling was going down some at this point!

So happy to have Daddy hold him!

I love this chunk so much.

Once we got to the main floor, things were pretty calm. The nurses didn't come in as much and Brennan was continuing to get his sweet personality back! And I got to hold him more. We were both happy. Jimmy and Cori came to see us that afternoon, and that night My brother, Lindsay, Joel, Darlene and Savannah all came to visit. It was nice to see them, and so great to see my Banana!! I had really been missing her. She was most excited to see my brother (Gordon), but she was happy to see me too. She was really good about being sweet to Brennan, even though we didn't let her get to close. She really only saw his face for the most part, but when she saw his incisions for the first time, she gasped and said "Oh no, his boo boos!" She has be gentle with his head ever since, so that's been super great!

Happy boy! And you can see how his head shape is already more round!

Friday morning came and after the doctor's made their visit to check on Brennan, Dr. Reisner said we could go home! They had originally thought we might have to stay until Saturday, but Brennan was doing well enough that they said we could leave around noon. We were SO happy. Brennan's biggest issue was some crazy projectile vomiting/massive spit up's, so it was totally doable to deal with at home (but so super gross...he's still doing that now!! He spit up some before, but sheesh!) So we got cleared for discharge, got Brennan's medicine and headed home. The only thing they didn't do before we left was clean his head off. They didn't clean it at all while we were there (one nurse took compassion on his ear from when the line had backed up) but they told us that when we got home we had to give him a bath and clean him up. Which was fine, but it really stressed me out. Thankfully Jacob did it and Brennan was pretty cooperative! We were all glad to get home, and I think Brennan relaxed more being home too.

Happy to be home.

A star made a wish on us tonight, hangin' out in heaven inspired by our light.

Part 2

So the 24th got here. Some days it seems like it got there really fast, and other days it seems like it took a while to get here. My attitude towards the situation was that I just wanted to get it over with. I was not excited about having to send my sweet little man into surgery, but if it was going to happen, I wanted to just do it and move forward. I was definitely nervous and scared for my little guy, but I also had an overwhelming peace about the whole situation. Especially while we were in the hospital - I just knew that the Lord was watching over us and that He was very mindful of our family. Also, in the scheme of things, our situation was a temporary one. It was a hard procedure for Brennan to go through, but one that would be done and then after a few days we could go home. And there would be no other ramifications (other than possibly wearing a helmet.) There were families that I saw there that had so much more going on; so many struggles and road blocks to get their children healthy, that I felt it would be incredibly ungrateful of me to complain.

The morning of the 24th, we woke up early (I didn't sleep much the night before...) and got to the hospital at 6:30 a.m. We have wonderful parents who helped take care of Savannah for us while we were at the hospital. We were so blessed that they were willing to help us out and that Savannah loves them all so much! My mom kept her the first day and night and then she stayed with Jacobs parents the rest of the time. We arrived at the hospital and completed check in and just waited. I was very anxious and nervous the whole time, and I really just held Brennan a lot. He's such a snuggler and I wanted to get in as many snuggles as I could because I knew I wouldn't be able to hold him for a while. Jacob also got in some last minute snuggles.

Before we took him back to surgery, Dr. Reisner came in and so did the plastic surgeon, Dr. Williams, who was going to be doing the reshaping part of the surgery. Jacob and I loved both surgeons and knew that Brennan was in excellent hands.  We also met with the nurse who would be taking care of him during surgery as well as the anesthesiologist. They were very reassuring and answered any last minute questions we had. Again, we knew Brennan was going to be well cared for, and that was a reassuring feeling. Then 8:00 rolled around and it was time to take little man back. They let me carry him until we got to the surgical wing and then the nurse took him the rest of the way. We went back to our little waiting room (each family has their own room to wait in) and the nurse called about every hour while he was in surgery to let us know how things were going. Also, Dr. Reisner and Dr. Williams came in when their portions of the surgery were over to tell us how everything was progressing. All reports that came through were very positive, and when Dr. Reisner came in he was very pleased with how the surgery went and how there was already a difference in his head shape! Dr. Reisner has the best bedside manner and knew how to keep us at ease, even though we just wanted to see little man.

Oh, and just for informative purposes, there are two ways that they can do the surgery - the minimally invasive approach and cranial vault remodeling. The cranial vault remodeling is the most common form of this type of surgery, because most of the children who need the surgery are over 4 months in age. Since by 4 months the skull is thicker, the minimally invasive is a bit more dangerous in case there are complications. The surgery takes longer as well, since the skull is thicker. Since Brennan was only 2 months at the time of surgery, he was able to have the minimally invasive approach. It was our decision as to which approach we wanted to do, but Dr. Reisner thought it would be the best option for him, and we trusted his opinion. He would have three incisions on the top of his head, instead of one zig zag scar that went from ear to ear across the top of his head.

The first time we got to see Brennan post surgery was up in the PICU (pediatric intensive care unit) and I'm not going to lie, it was kinda tough. He just looked so out of it and he was moaning. And the moaning was so sad sounding - they had put a breathing tube in him (we didn't see him with it in) and his voice was so hoarse. It was a little heartbreaking. The nurses that we had when we got up there were so amazing and wonderful! They were patient with us and so nice and accommodating. Brennan just really wanted to eat, and they wanted him to eat some Pedialyte and keep that down before he could eat any formula. He was NOT a fan of that plan, and I could tell that all he wanted was his bottle. After a little while they told me to go ahead and give him his formula and he was a little happier. It was really hard not to be able to hold him, but he held my fingers a lot and he would calm down some when he heard our voices. They told me that I could hold him if I really wanted to, but that it would be hard on him and pretty uncomfortable for him. I didn't want to put him in any more pain, so I told them I would just wait. It was hard, but I still think it was the right decision. Overall, Brennan was doing really well given the circumstances, and the doctors and nurses were pleased with how he was doing. As evening rolled around, they determined he needed another blood transfusion, but that is pretty common in a smaller baby. He also had one during the surgery. 

This was what Brennan looked like when we first walked into his room.

He eventually drifted off to sleep for a bit.

He was hooked up to so many things!!!

Holding mommy's hand. He melts my heart!

Happy to finally eat!

 

You could be my luck, even if the sky is falling down, I know that we'll be safe and sound.

Part 1

Ok, so it's been a little bit since my last post, but I think I'm finally a point where I can play catch up. I really want to post about Brennan's surgery, and do it over a few posts. When I started researching, I really just wanted to read other peoples stories. I didn't want to ask doctors a bunch of questions (which I did do, of course) but I just wanted to be prepared for the reality of the situation. What the hospital stay would be like, what to expect from recovery. As long as I know what to expect (I do not like to be surprised in those kinds of situations), I am usually pretty calm. That being said, I had a hard time finding people who blogged about their situation, and I felt like I should blog about Brennan's journey. The few stories I did find were so helpful, but none of them had the minimally invasive procedure done, which is what Brennan had. But I will get to that in a minute!

From the moment Brennan was born, we got comments about his head shape. The nurse that cleaned him up said his head shape was a little off, but that it would go away soon. One or two other doctors all commented on it as well, but since he was so little, they weren't very concerned. When we went to his first pediatricians appointment (the day after we were released from the hospital) our doctor, Dr. Hassel, immediately noticed that his head shape was off and felt a ridge on his skull. I could tell she was a little concerned but she was so great about being calm and telling us what the potential issue could be, craniosynostosis. This was something I didn't know a ton about, but we had some friends whose son had it a year or two before, so it wasn't completely foreign to us. She said she would check it again at his one month appointment, and then we would go from there.

This was his head shape when he was born. A little cone shaped and little pinched.

Jacob and I both had a gut feeling that little man was going to have to have the surgery, and as he continued to grow over the next month or so, you could tell. Brennan is pretty big for his age, and he has grown quickly!! At his two month appointment he was already 15 pounds. He was getting bigger but the top of his head wasn't really growing much. It was definitely pinched, and if you looked down on his head, it had a kind of football shape to it in the back, it wasn't rounded.

 

 

 

At his two month appointment, Dr. Hassel noted that his ridge had not made any change at all, and that she was going to refer us to a pediatric neurologist. She was very calm and honest about the situation, and I was really grateful for that.

I have to interject here - I have loved Dr. Hassel since the day I first met her. She was the first pediatrician at Northside to look at Savannah when she was born, and when she came in to talk to me I remember thinking that I needed to find out her name because I wanted her to be our doctor! Of course I totally forgot. Being a new mom made me a total space cadet. Well, as luck would have it, our first appointment once we were released from the hospital was with this Dr. Hassel and when she walked in the room, I was so happy it was the same doctor I had so badly wanted to see! She has been one of the best doctors I've ever been to. I honestly can't say enough positive things about her, and this experience has made me even more grateful that she's the one I trust with my children's care. She truly loves her job and her patients. She even came to see us while we were in the PICU. Anyways, I am rambling here, but I think you get the point. Dr. Hassel is amazing :) 

We got referred to Dr. Andrew Reisner and had an appointment set up to meet with him immediately. Up until this point, I was very calm about everything, but the urgency in getting him checked out so quickly kind of freaked me out. I was really nervous about the appointment. While we were in the waiting room, I was still anxious, but the minute I met Dr. Reisner, I was calm and had a really peaceful feeling. He pretty much took one look at little man's skull and was pretty certain he was going to need surgery. He had us come back in a week for a CT scan just to make sure and see what the situation was, but he was also very honest and reassuring about the reality of the situation. I really appreciate that approach!

It turns out that Brennan has sagittal synostosis, meaning the plates that run from his forehead to the back of his head were prematurely fused. The plates aren't supposed to fuse until the child is 2 years old. The only option for this is surgery. If you don't fix the problem, there are a whole lot of issues that can arise: blindness, seizures, brain damage, permanent head deformity, and problems with speech & language development.

The surgery was scheduled for September 24th, and at this point there was nothing for us to do but prepare ourselves for what Brennan was going to go through, and just wait for the surgery date to get here.