Jackson

I just received the horrible news that baby Jackson has passed away. Jackson was a baby that was in the CVICU with Caydence basically the whole time she has been here. They just went home a couple weeks ago and were supposed to be back here in about a week or so for his next heart surgery. My heart goes out to his family. I can't even begin to imagine how they must feel right now. I was just thinking about them today and was excited that I would be seeing them again soon. This just goes to show how precious life is, and I am just so thankful that my baby girl is doing OK. Hearing this news is such a shock to us and really hits home because when we spend so much time with these other babies and their parents they become like family to us. I just ask for everyone to have Jackson and his family in their thoughts and prayers.

The Ronald McDonald House

Since Caydence was transferred to Stanford, we have been staying here in Palo Alto. The first couple days I was admitted to the hospital too so of course I had a room there. After I was discharged we had to wait a couple weeks before getting into the Ronald McDonald House. For those first couple weeks we had to stay at the hospital in parent sleep rooms. I don't think I can even find words to describe those sleep rooms... picture a large room with windows all around and 2 pullout couches on each side of the room. It was already hard enough dealing with Caydence just having surgery and all that came with that, then we get thrown in a room to try and sleep with 3 strangers right next to us. Pretty crazy. At least we had a place to stay because getting a hotel here in Palo Alto was pretty much out of the question. If you aren't familiar with this town, let me tell you...it is expensive!! We were so thankful when we finally got the phone call from Juan at the Ronald McDonald House that he had a room for us. Not only did it mean we didn't have to stay at the hospital anymore, it meant we could have Tanner come stay with us. He had been staying with my mom or Eric's mom while we were here since he couldn't stay at the hospital with us. It was still kinda awkward being here at Ronald McDonald because all that you really have that is private is your room and bathroom. We have a community kitchen and dining room, TV room, and laundry room. Our room only has a full size bed (which is not comfortable at all!) a couch, and a bathroom. I can't complain too much about this place because for 1- it is a cheap place to stay, 2- they really offer a lot here like dinners donated by restaurants, companies, and families, 3- Tanner loves it here. They have a playroom with volunteers to entertain the kids. We've been lucky that we are here during summer time because they have the Ronald McDonald summer camp. We can actually leave Tanner here for 4 hours during the day and he gets to play, do activities, and have all kinds of fun. The only hard part is trying to get him to leave. I'd have to say that one of the best things about staying here at RMD is the people you meet (well, some of the people you meet). We met some really great people here that we were able to share our experience with that could actually relate to what we are going through.

Heather, Greg, and baby Austin

James, Rachelle, and baby Jayce

These are the 2 families that we became the closest with. They are really great people that I am sure we will be friends with for a long time. Unfortunately, both families left us on the same day. Don't get me wrong, I am very happy for them to be able to take their babies home, but we sure do miss them a lot! 

Pictures

Caydence was doing so well at first they brought her in to see me after they got her situated.

Caydence in the NICU at Sutter Memorial Sacramento

First time holding Caydence

(Dr. Tanner making sure everything is OK)

Caydence at Lucile Packard Childrens Hospital after being intubated

First family photo

(First time being held by daddy)

 

 

 

The last 3 months....

So I am new to this whole blogging thing and I never really thought that I would have one, but I figured that this would be a good way to keep everyone updated on how things are going. So I'm not really sure where to start but I guess I will just start from the beginning. So here we go....Caydence was born on April 19th in Sacramento. She was delivered by C-section and everything went great. As most of you know, when I was 20 weeks pregnant we found out that Caydence had an omphalocele (her liver and intestines were growing outside her abdomen). This was the reason we delivered in Sacramento. While I was in the recovery room, our surgeon came in and told us that her omphalocele was smaller than we expected so she felt comfortable doing the surgery to place everything back inside. We were so excited to hear that. After I was out of recovery, Eric wheeled me to the NICU and I was able to see and touch my baby girl. We thought our day was going so great until the cardiologist came in and did an echo on Caydence. We were sitting in my room visiting with family when our surgeon came walking in with the cardiologist. He began to tell us that he found a large AP Window in her heart and that in his 10 years of performing heart surgery, he has never fixed one. He told us that Caydence needed to be transferred to Stanford to have open heart surgery. I was in complete shock and broke down right away.It was just unbelievable how fast things went from great to bad in  a matter of minutes. So the transfer was set up for Caydence but the ambulance didn't want to transport me unless we paid up front, so I discharged myself and Eric and I got in the car and followed behind. 3 hours later we arrived here at Lucile Packard Childrens Hospital. Caydence got settled into the NICU and I got settled into my room. Her first night went ok but by the next day she started having episodes of D-Sats. On the 21st her sats dropped all the way down and we couldn't get them back up, she turned purple from head to toe. They had to intubate her which they had a hard time doing. She was scheduled for her 1st open heart surgery on the 23rd, 4days old. They took her to the operating room and put her out, and before starting anything they did a bronchoscopy to see why they had such a hard time intubating her. They found that her trachea was extremely narrow so they performed a slide tracheoplasty. Now her trachea is as wide as it should be but half the length it should be. Dr. Reddy finished that then started working on her heart. After an all day surgery (she went in at 8am and didn't come out till almost 7pm), Dr. Reddy came out and told us everything went great. He said that he had seen that her left lung is smaller than her right, which shouldn't be a problem, she has narrow pulmonary arteries, a pig bronchus, and an extra drainage to her coronary sinus which would need to be fixed later on. He had to leave her chest open because of all the fluid in there. Seeing Caydence for the first time after surgery was horrible. She was so pale, her chest wide open, and still paralyzed and sedated. It took 8 days to finally close her chest. With her tracheal reconstruction, she had to lay in the same position for almost 3 weeks. we couldn't even move her head a little. It was such a relief when we finally were able to turn her head slightly. She was on so many different drips for sedation, pain, and things I can't even remember because so much was such a blur. I think we were still in shock for the first few weeks. Not being prepared for any of this was really hard for us. All we knew about beforehand was just the omphalocele which turned out being the least of our worries. We just kept the omphalocele covered in silvidine cream and wrapped in gauze. Caydence was healing normally from the heart surgery but still had trouble coming off the ventilator. All our Dr's just kept saying that she needed to grow and get stronger. So we waited and waited. After 6weeks of being there the dr's realized she wasn't going to come off the vent anytime soon so they finally let us hold her. Eric held her first because he never once held her (I at least was able to hold her once before she was transferred and once after she was transferred). It was great to finally be able to hold her after so long. Just to hold her though took 2 nurses and a RT, it was quite an ordeal just to hold her but way worth it. After a trip to cath lab, CT, having multiple tests, and being seen by multiple dr's, no one really knew why we couldn't get Caydence off the ventilator. The word tracheostomy started coming up more frequently. The pulmonary team came in and looked over her history and said in their opinion with everything going against Caydence she would most likely need ventilator assistance for at least a year.We decided to do another bronchoscopy to look further down her airways to see if there was a blockage or anything that is really stopping her from coming off the ventilator. We really didn't think it was going to show anything. We thought just like the other dr's, that she just needed to grow and be bigger and stronger. But to our surprise they found that her left bronchus branch collapsed with every breath she took. They told us there was nothing they could do about it because she was too small. If she were bigger they would be able to put in a stint to hold it open, but since she is just a baby there is was nothing they could do. That's when knew that the tracheostomy was what our next step was going to have to be. It was really scary thinking about having to put a trach in our little girl. Having that would mean that she would have to go to another facility to be cared for, and just hoping that we would be able to get a home health nurse to come to our house to care for her which we have been told that it is very hard to get someone in the area we live. We decided that before we would jump right into the tracheostomy we would give her one last chance and see if we could get her off the vent. While in the process of trying, her pressures on the right side of her heart got worse. She went to cath lab again, and there they measured all the pressures. Her surgeon Dr. Reddy (who is amazing by the way) decided that she needed to go back into surgery and close the ASD, the unroofed coronary sinus, and widen her pulmonary arteries. His only free day to fit her in was on the 4th of July. She was his only surgery for the day which was kinda nice because she was all he needed to worry about all day. After surgery was done, Dr. Reddy came to the waiting room where Eric and I were, and told us everything went really well. He was really excited because things went better than expected. He widened and patched both pulmonary arteries plus the branches coming off the right side, he closed the ASD and the unroofed coronary sinus. The best news was that while inside working on her, he had seen that her aorta was compressing on that left bronchus branch that we had seen collapsing. He pulled the aorta up as far as he could and tacked it to her sternum. He said that he thinks that was her whole problem and we should be able to get the breathing tube out. Eric and I both looked at each other and couldn't help but to be so relieved. We knew that he might have been a little too optimistic about when the breathing tube would be able to come out knowing that she has been intubabted for almost 3 months so it might still take a little while. But it was such a relief knowing that the problem was fixed and now all she had to do is get that branch to strengthen up. Seeing her after this surgery was not nearly as bad as the first one. He was able to close her chest with this one so I think that helped alot, also I think we already knew a little of what to expect since we had already been through this once. The first few days were a little scary just because now everything in her heart was working as it should and she was getting the right amount of blood flow to her lungs, but her body needed to adjust to that. She had a whole day of constant D-sats whenever she would wake up a little. Once her body got used to how everything was working she turned into a different baby (in a good way). It was amazing seeing her heart rate so low now and her breathing rate starting to be about normal. We did another bronchoscopy about a week after surgery to look and see if that branch looked any better. It did look better than before, but still collapsed quite a bit. We were a little discouraged after seeing that because we thought that it was going to look way better. All the Drs were still thinking that she would end up needing a tracheostomy and needing ventilator support for a while. We still wanted to give her a shot at coming off so we set up a plan to wean down the settings and see where she goes. As the days go by, we have been weaning the settings very slowly to give her the best shot possible. To everyone's surprise, she is actually doing very well. Her breathing rate has been better than ever and she has been tolerating the weans. We still aren't out of the woods yet, there is still a possibility that she wont be able to come off, but we are very optimistic that she will. At the rate we are going we should be low enough on the settings to try and extubate her in a week to two weeks. We will see how she does but we can only hope that she can do it. All we want is for our baby girl to get that dang tube out of her mouth and start being a normal baby. She is about 3 1/2 months old now and we just want to be able to hold her and treat her like a baby without having to take so many people and such caution to do. I wish I would have started doing this blog sooner because this is such a long post. 3 months of info in one post is too much. I just wanted to say thank you to everyone for all the love and support that you have shown. Especially those of you from work. Without all that PTO that was donated I don't know what I would be doing right now. I want so bad for Caydence to be better and to take her home so we can first be a real family, and second so I can make it back to work. I hope I still have a job when this is over and done with because I really do love you guys like family and I can't wait to see you all again! I promise to keep updating so I don't have to cram this much info into one post again!