Monthly Archives: November 2014

I Want….

I want to hear my girls crying because they don’t want to share toys. I don’t want to hear Beckett scream because he had to have his 3rd IV in one day.

I want to watch tv with Shawn. I don’t want to watch monitors.

I want to clean up spilled milk and sticky faces. I don’t want to clean up vomit because Beckett fights his meds.

I want to nurse my baby. I want to comfort him when he’s sad. I don’t want to wait for the smelly, thick formula to warm up.

I want to lie down because I’m tired from chasing the girls around or running errands. I don’t want to lie down, exhausted because Beckett is so uncomfortable and can’t sleep.

I want to get a headache because my kids are loud and crazy. I don’t want to deal with a migraine because I’m more stressed than I’ve ever felt before.

I want to make dinner and eat as a family. I don’t want cafeteria or cold fast food.

I want the well check visits where the pediatrician tells me how great my kids are looking and to keep up the good work. I don’t want conversation after conversation about how sick my baby is and wondering what I could have done differently.

I want to take a rushed 5 minute shower so that I can hurry to stop the girls from getting into trouble. I don’t want to use a communal shower.

I want to spend forever trying to put a fussy baby to bed. I don’t want to spend forever trying to put him to bed only to have nurses wake him and poke him every 30 minutes.

I want to hear him coo and giggle. I don’t want to hear him choke and gag.

I want, I want, I want. I want my old life back. I want the piles of laundry, the runny noses, the clutter. I don’t want the liver disease, the doctors and the worry.

I want a healthy baby.

I’m sure the day will come where I feel more positive about things but for now I want to be angry. And I want to cry.

But most of all I just want my healthy Beckett back.

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“I hate the roller coaster…”

IMG_6962 copyWe had started the formula feeding pretty soon after Beckett was drained Wednesday afternoon. The first time we tried feeding him, he only drank 1 oz. He did not like it. The next time he was starving and we made it pretty warm. He drank 4 oz. I was feeling optimistic. Then we decided to go to slow flow nipples so that in a month when we can go back to nursing, he will be more willing to nurse. After we made that change though, he would only drink an ounce at a time. I was not feeling optimistic.

Morning came. He still was only drinking an ounce every few hours and we were just waiting to figure out the game plan and hopefully get home later on. Dr. Book came in pretty much first thing in the morning and we started to discuss things. She felt Beckett’s tummy and wasn’t happy. It was already getting tight again. So she decided that we would proceed to get him drained again but this time we would leave the drain in and watch it. That meant we would be admitted for at least 3-4 days. Another disappointment. She also reemphasized to us that it was critical that he take the formula. If he didn’t then he would be put on a feeding tube. She did say though that if he will take the formula well, that I could have one nursing session a day.

After she finished speaking with us, it dawned on me. Addie’s birthday is on Sunday. We are celebrating on Saturday. And now we will be at the hospital. I broke down. Is this my life now? Will we be constantly missing important life events or rescheduling things? I needed to leave. I needed to breathe. I stepped out to make some phone calls to make arrangements for Addie and Raemee for the next couple days and to figure out what to do about Addie’s birthday. Thankfully, we are so blessed with wonderful friends and family who stepped in to help us take care of everything so we can balance our two lives. We can take care of Beckett and also make Addie’s birthday the day that she deserves.

While I was out, Dr. Book came back and spoke to Shawn. She was very frank with him and told him that she was fairly confident that Beckett would need a feeding tube based on everything so far. She wanted us to be prepared. When I found that out, I was so resolved to keep trying. I wanted to go back to the regular nipples to see if that made a difference. We had to have Beckett fast until he went for his procedure at 1:00pm to get drained again. So I just kept hoping that once we could start the feedings again, that he would do it. That morning was so long waiting for them to come get us. Finally at 1:30, they were ready for us. We headed back to the Jazz room and were told again what to expect. The only difference is this time we would leave the room with a drain out of his belly.

Once Becks was situated, we headed up to the room that we would call home for the next few days. We just hung out until the nurses came to get me to head down to get him. Another long wait even though in reality it was only 30 minutes or so. I walked with the nurses back down and saw my little warrior. He was pretty out of it. The doctors came to talk to me about everything. They said it went well. They drained another 400 mL. That’s 13.5 oz. I couldn’t believe it. They then showed me how to open and close the drain, signs to look for and then repeatedly told me to be super careful that we don’t pull the drain out. Each new conversation I have with doctors makes me more overwhelmed and scared and yet at the same time strangely empowered.

The nurses and I headed back upstairs and got him situated. We did his vitals and weighed him. When he was weighed initially Wednesday morning, he was 13 lbs 6 oz. When we weighed him Thursday after his second drain, he was 11 lbs 8 oz. Just by taking out that fluid he lost almost 2 lbs. But he looked amazing. After vitals were done, Dr. Marty came in. She is a resident with the GI team and she is awesome. She explains things so clearly and answers every question I have. She told me the game plan. We would watch the draining. They would empty his bag every couple hours and measure it. Because he is losing so much fluid, we have to replace it with protein rich fluid called Albumin. We also had to administer IVIG (immune Globulin) to make up for all that he was losing. We would also keep an eye on how much formula he would take. And we got the green light to start feeds again. I had them get us 2 oz. We warmed it up and put a regular nipple on. Beckett sucked it down so fast. We had them get another 2-3 oz. He drank that also. I was slightly optimistic that it was just a nipple issue and not the formula but he was starving so we would have to wait a few feeds to figure out whether or not it truly was that nipple issue.

We continued to feed him throughout the day and he still did great. He would consistently eat about 4 oz. I was pretty happy about how well he was accepting it. He didn’t seem to care about the taste. He cared a lot about the nipple and also the temperature. Later that evening, the GI doctors came around to talk to us. We met Dr. Jackson and Dr. Marty came in with him. He explained to us in great detail exactly how the liver works and just how biliary atresia affects everything. He helped us understand it in a way that was very visual and gave me a different and better view of what was going on inside our little man cub. He also had me feel for Beckett’s liver and spleen. It was fascinating having him tell me exactly what I was feeling for. Beck’s liver is HUGE!! It takes up most of his chest cavity.

We went to bed feeling fairly ok with the events of the day. We felt like we were moving in a good direction. We slept pretty well and woke up around 7 am Friday morning. Beckett did great all night, slept well and ate well. As we were getting ready for the day, the GI doctors cam around again. Dr. Jackson looked at the fluid and felt like it was looking pretty good so he wanted to consult with Dr. Book about how long to keep the drain in. I found out that Beckett had drained 400 more mL overnight. So much fluid!! But the amount coming out was at a much slower rate which was another reason he wanted to talk to Dr. Book.

He then asked me if I understood why we were giving him this special formula. I gave him what I thought was the reason and oops I was wrong. He then went on to clearly explain it to me. I thought the formula was a low fat, which was why he couldn’t have my breastmilk because it’s too fatty. But that’s not the case. It’s all about the type of fat. The type of fat in breastmilk goes through the lymphatic system. This is why he can’t nurse. Because his lymphatic system needs to heal. The kind of fat in this formula actually goes straight into the blood. It never goes through the lymphatic system. I felt so much more knowledgeable about exactly what was going on.

Later on in the morning, Dr. Book came in with her whole liver team. There was her nurse, Holly, the liver coordinator, Brook and the social worker, Barbie. It was awesome having our whole team with us to talk to us. Dr Book looked at Beckett and then started telling me how glad she was that we had the drain in so that he didn’t have to go in and be put under again to get that additional 400 mL out that had accumulated throughout the night. She also looked at the color and was really happy about it. It wasn’t milky anymore which means the fats weren’t in it! So we will need to get it retested at some point to be sure but that is looking good! She even suggested that we might take the drain out and treat the rest of the fluid build up with diuretics, which will help him just pee out the extra fluid. Then she asked about his feeding and was really happy with how he’s doing.

I started feeling like things were going to be ok! Finally a visit with doctors that wasn’t bearing bad news! I was feeling happy about things. I started thinking, “I can do this!” Beckett got hungry and so I pulled him out of bed by myself, wires and all. I fed him. He took in about 3.5 oz and then I burped him. He did great. He started looking sleepy so I put him down for a nap. Then he got this look in his eye and spit up a little. I helped him sit up and that’s when it happened. He started vomiting. Not just spit up. Full on vomiting. I was so scared and Shawn was working so I was alone. I ran out of the room to get a nurse but no one was there. I came back in to help clean him up and he threw up a couple more times. I ran back out and found a nurse to come to help me. His puke was curdled and gross.

So here I sit. Now I feel like I’m back to square one. Is he not tolerating the formula as well as we thought? Or was it a fluke? Will this keep us in the hospital longer? Will he need a feeding tube? I hate the roller coaster. I’m hoping as the afternoon passes that we will get some answers. That I can get some reassurance. It may have been a fleeting thought, but the “I got this” feeling was wonderful. I want it back.

 

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Beckett’s “Simple” Follow Up

(null)The past two days have been hard. Really hard. I’ve been looking forward to and completely dreading Beckett’s follow up appointments. I wanted to know how he was really doing but at the same time I was terrified to know exactly what our future looked like. We had two appointments set up. 10:30 am with the surgeon, Dr. Scaife, and 1:40 pm with our liver doctor, Dr. Book.

Today arrived. I prayed really hard for peace. I just wanted to feel peace no matter what news we received. When I woke up, I was feeling pretty good. Apprehensive but good. We packed an overnight bag just in case, got the girls settled and packed the baby in the car. We drove up to Primary Children’s. As we started driving, it was silent. Too silent. So we turned on Taylor Swift’s new CD and jammed. It helped take my mind off of the day. But the closer we got to the hospital the more ill I felt. I was so nervous.

We headed up to general surgery and checked in. They then took us to get some labs done. Sweet Beckett was quite the charmer as the nurse prepped his foot to get pricked. He bled good for her and then we headed back to general surgery to meet with Dr. Scaife. As we waited in the room for him, we noticed a mural on the wall. There was a saying on it that if we looked closely we could see all the letter A to Z. We spent the next 15 minutes trying to find the letters. They may have designed that for kids but 1, it was hard and 2, it was a great distraction for us as parents.

Dr. Scaife walked in. “How are you guys?” We smiled. “You tell us.” We laid Beckett on the table and lifted up his shirt so Dr. Scaife could look at his belly. He told us that his belly looked distended and he wanted to send us to get an ultrasound to figure out what was going on since it could be several different things. We asked about his incision. He told us that it looked fabulous. No issues there. Perfect! The lab work still hadn’t come in so he told us we would have to wait until we saw Dr. Book. We headed out to the main room to see if we could get in for an ultrasound. I don’t know how we lucked out but we were sent straight down to radiology for the ultrasound!

When we got there, our tech, Brad, called us back. Now Brad was the same tech that did his initial ultrasound exactly 4 weeks ago today. It felt nice to have a familiar face. Brad is awesome. He asked us questions, did the ultrasound quickly and laughed at all of Shawn’s jokes. Shawn made some comment in regards to how much money the surgeon makes and it made Brad laugh so hard that it took him a good couple minutes to compose himself to continue. That’s one thing I’m so grateful for. Shawn knows how to keep things lighthearted even in the midst of massive stress. Laughing our way through all this crap makes it a little easier. As Brad was doing the ultrasound, he told us all the black on the screen was fluid. I’m no tech but even I could see that there was way way too much in there. I immediately started kicking myself. We’ve been measuring him everyday and the measurements didn’t change until the past day or two. So what was I doing wrong that he had that much fluid and we couldn’t see. I’m not cut out for this.

After the ultrasound was over, the head radiologist came in and talked to us about the results. He said that in his opinion there was a “large amount of fluid” and he thought that Dr. Book would most likely want it drained. In order to drain it, Beckett would need to fast for 6 hours. Well here it was noon and he hadn’t eaten since 9 am. So I figured our appointment with Dr. Book was in two hours. It wouldn’t hurt to hold him off in case she did want it drained. Then we would already be ahead of the game. We left and went to get some lunch before our next appointment.

After we ate, we just sat for a minute. It was hard to know what to say. We still felt clueless. All we knew was that his belly had tons of fluid, something could be massively wrong and we had no idea how well the surgery was working because the labs weren’t in. We decided to head up to Dr. Books office early just in case they could get us in. While we waited we looked over the valley and tried to sort through the limited information we had. Soon enough it was our turn.

We headed back to the room and before anything was done, they went and grabbed Dr. Book. The radiologist had seen her on her way over and told her about Beckett. At this point, our appointment turned sideways. Instead of talking with her about things, all the sudden she was there telling us that we were headed back down to radiology to get his belly drained, they were going to place an IV and we would need tons more blood work done. Then we would be sent to the RTU (Rapid Treatment Unit) to recover and wait for results. Most likely we would stay overnight.

Before we headed down we asked our liver nurse, Holly, a bunch of questions. She was great as we tried to process what was happening. I asked her about his bilirubin levels. Before his surgery his levels were at 8.4, now three weeks later they were at 7.4. I’m not a doctor but that difference doesn’t seem that great. Dr. Book came back in and got us moving since radiology was waiting for us.

Back down to radiology. We went into a little procedure room and that’s where we met the doctor who would be performing the draining procedure. It’s also where Beckett got his IV. The nurses came in to do the IV and went straight for his head. They didn’t even try in his hands or feet. He screamed bloody murder and I sobbed in the hallway.

IMG_6945[6]After the stupid IV, they took us into this big room, the Jazz room. There are pictures of all the Jazz players, signed sports memorabilia and the ceiling tiles have all the signatures of all the players, past and present. It was pretty awesome. They got Beckett situated and then took us to a waiting room. Through all this I hadn’t been able to feed Beckett. But I had no idea that this was going to happen so even though we were prepared with overnight bags, I did not bring my pump. No big deal I thought, I’ll just use the hospital stuff. Nope. In looking into it, because what we were doing was an outpatient procedure and we would not be admitted even though we were staying overnight, it would cost $100 to use the hospitals stuff. Yeah, not happening. So I dealt with the pain until I could feed Beckett again.

The draining itself was actually super fast. Like 20 minutes and they were back to get us. They said that they drained 460 mL from his belly which equates to about 15.5 oz. and there was more in his tummy. He was awake and they said he did awesome. He never cried, just hung out. He was looking around and was calm until he saw me. Then he started screaming bloody murder. The Dr. said I could feed him since he was doing so great so we walked to the RTU and got into our room and I started to nurse him. Oh how quickly he calmed down. We just let him rest and hang out and had to put a sock over his hand so that he wouldn’t pull the IV out from his head. Then we waited.

After a couple hours, Dr. Book came in to talk to us about everything. She said that the fluid they took out of Beckett was milky. They tested it and determined that during his surgery his lymphatic system was damaged. There is fat from his food leaking through the lymphatic vessels. Then she proceeded to tell me that in order to fix the problem, I can’t nurse him anymore because breast milk is super fatty. He needs to be on a special formula. And if he won’t take the formula then they will put him on a feeding tube until his lymphatic system is healed. I am devastated. She said that its temporary, maybe 3-4 weeks but that’s a hard pill to swallow. That your milk is actually causing the damage to your baby. That the comfort and bonding that your baby enjoys can’t happen anymore. Pumping and saving my milk to hopefully nurse him in a month is the only solution. That was hard to hear.

She then felt his belly and said his spleen was enlarged. This could be from the pressure of his liver and the fluid. Not a great sign. I asked her where they want the bilirubin levels to be and she said under a 4. We’re at a 7.4. So that’s not super optimistic. She said she was going to keep an extra close eye on him. She then told us we would be staying overnight to get the rest of the fluid drained and to make sure he was taking the formula. And that we would be back next week for follow ups. She encouraged us, told us we would get things under control and that he would be ok, whatever course that may be.

IMG_6950I love Dr. Book. She never skirts around the issues but she is a glass half full person. She already cares about us and will do everything in her power to help Becks. I hate this situation. I’m not handling it well. But she gives me courage. I know Becks is being taken care of. And for that I am and forever will be eternally grateful.

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Opportunities to Do Good

Shortly after discovering Beckett’s diagnosis of BA (Biliary Atresia) Kim was introduced to Michelle Rowan by a neighbor of ours. Our neighbor had a feeling that Michelle could help us since Annie, Michelle’s daughter, received a liver transplant a few years back. Michelle welcomed us with open arms and provided us with introductions to our new liver family. These amazing liver people are so accepting and understanding of the situation we found ourselves in. We were the lone deer in the headlights and these people slowed down from their busy emotional lives and helped us find our way to a safe place.

Without fail, every time I watch the video of Annie and the experience of the Rowan family my emotions get stirred. First, I can’t imagine being in their shoes knowing that my child only has 48 hours to live without a transplant. Second, our neighborhood and friends have rallied around our family in very similar ways that Annie’s did at the time of her diagnosis and transplant. We have been drowning in the kind acts of others. The toys have been played with, the meals and goodies have been tasty, the conversations/letters and messages have brought tears to our eyes, and the many prayers in our behalf have been felt. As strange as it sounds, my faith in humanity has been restored. There are so many good people living among us. I feel the love of my brothers and sisters and am beginning to understand what it means to be a child of God and a part of a heavenly family living on the earth.

I now have a weight on my shoulders. A weight that I don’t know how to repay. There have been so many people that we know and don’t know who have helped our family. How could I ever repay all these people? How could I ever truly express all of the gratitude that I have for them? The worst part is, I know I have more to ask of these individuals. It’s painful. I’m not accustomed to asking for help. It’s humbling to realize that I can’t do this by myself.

What I have learned through all this is that because of others I will look for opportunities to do good, to show people I care, and to jump in on big or small acts of kindness. There is a fire burning inside to pay it forward. It’s because of others that I now know more than ever that one prayer, one thoughtful message, one hug, or one single smile can make all the difference. I hope that one day I can be the difference that others have been for Kim and I.

Please share with us an act of service that others have provided for you that you are grateful for. We would love to hear your stories.

Written by: Shawn

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