Well, we had another eventful weekend! The thing that is the hardest to get used to for me with our life now is that things can turn dramatic very quickly. I am used to setting up the dialysis and used to the routine doctor's visits. We're used to all the day to day aspects and they really don't stress me out anymore. You can get used to anything if you do it day in and day out. But, what is challenging is that you'll be going along, feeling pretty settled with everything and suddenly you are driving to the hospital and over-analyzing your babies' every breath to make sure they are still breathing normally. And while it is true that no one knows what the day holds and anyone's life can turn upside down in a second, it is still different when your life does turn upside down A LOT. You start to leave the house every day, just praying and hoping things will be as they were when you get home!
So a lot of our drama is 'blood pressure' related, which when it come down to it, is really fluid related. Your blood pressure is an indicator of how much fluid is in your blood vessels, how much fluid your heart is having to pump. If you have kidneys, they are excellent at maintaining fluid balance in your body. It is unlikely that a person with normal kidneys would ever really become fluid overloaded because if you drink a whole lot, you just pee a lot. It's just not a problem most of us encounter. Dehydration is more common because we do have to take in enough fluid. But, most of us are rarely badly dehydrated because we will feel really thirsty and drink more and our kidneys will filter out less pee to compensate. With dialysis, we're trying to walk this tight rope between fluid overload and dehydration and with a baby, there's less wiggle room. Often we'll find the way we are doing things seems to be pulling just a little too much or too little fluid so then we try to adjust it, and everything switches to the opposite extreme!
And we take blood pressure and fluid issues REALLY seriously in our house because of how sick Addie got from fluid overload in July. After taking out Max and Addie's kidneys, fluid built up in their bodies during the first week after surgery as they got used to dialysis. One week after surgery Addie started doing this grunting sound when she was breathing and lost all interest in food. She started sleeping more and playing less and just with each day acting more sick and pitiful. We actually thought she was just really sick with an infection so they ran antibiotics and she didn't get better. On Tuesday we saw on a chest Xray that her lungs had some fluid in them and that her heart was enlarged. We did an echo which looks at her heart and it showed that there was so much fluid surrounding her heart and in her blood that her heart was just barely pumping on one side. She ended up going to surgery to get this mega central line in her leg that enabled us to run 2 IV heart medications and a blood tranfusion all at once. This, combined with pulling off as much fluid as we could with dialysis, caused her to quickly get better. She looked really thin from the fluid loss and pink from the blood and her weight was way down. Her heart started pumping better. But, it is always a fine line and cardiology worried that we actually took it to the other extreme and dehydrated her. So we tried to give her back some fluid a couple days later. Well, her body didn't handle that very well. She had been lots better on Friday and Saturday but on Sunday she was crying and way fussier than ever and by midafternoon, she just stopped being able to breathe. She was turning blue and gasping and we ended up having to put her on a ventilator for 4 days. Her chest X ray showed her lungs were full of fluid. Somehow all the fluid we gave her because she needed it just ended up in the wrong place.
Addie did of course get much better. But all that is to say fluid scares me to death. And blood pressure tends to be a warning sign so when their blood pressure acts up, we all worry about what it could lead to. We worry that fluid overload could cause breathing problems and we worry that dehydration and low blood pressures could lead to a rebound fluid in the lungs effect when we try to re-hydrate. So it's scary for us. Which means the past 10 days have really not been much fun! Last Thursday Addie's blood pressure dropped to 50/25 (should be around 90/50) and we had to stop her dialysis, give her lots of fluid and take her in to the hospital. Her pressures rose nicely and her chest X ray was clear still so we got to come back home. We were all relieved and praying for nice high blood pressures. Which we got! Ha! A week later, Max's blood pressure is up to 120/80 which is high for a baby so we keep a close eye on it. By Saturday it's up to 155/110 so we have to immediately take him to the ER. We got admited and basically they just watched him really carefully and pulled fluid slowly with dialysis. His blood pressure came down enough that we were able to be released the next day. And so everything ended up being ok. But it was scary.
So God is so good and we're all home together now and just trying to fine tune dialysis all the time and learning from each experience. I will say that the idea of being admitted to hospital is probably different for us than a lot of people. I think if we'd never stayed so much at the hospital, I'd feel really overwhelmed and scared about having to be in the hospital. But for us, in all honesty, our hospital is a safe place. I stopped feeling as worried as soon as we were there. I don't want to have to go because I don't want them to be sick enough to need to be there but if they are sick, I am so happy for them to be there! And I settle into our hospital routine easily. I hated being away from Addie and Al but Max and I had quite a good bonding experience back in our old stomping grounds!
My mom asked the other day when we were taking Addie in if going back to the hospital brings back bad feelings and I said no. In my mind, our children's hospital is where our babies got well. They came there very sick in an ambulance and on ventilators from the woodlands hospital and they left again all big and cute and happy and well. And so I feel like the hospital is a place where they were taken care of and got well. On top of that, I loved our NICU nurses. Well, I love them present tense because having been away from there for 2 months has only heightened my appreciation for them. They loved our babies, took care of our babies and on top of that, they took care of me. They cared how I felt about things, talked to me for hours, comforted me when I was scared, distracted me with humorous stories when the days were long and were (are) my friends. They were this amazing in built support system. People who knew all the medical details of my life. People who saw through that and loved my children for who they were. People who knew how much I was going through and yet knew how blessed I was to have Max and Addison, just as they were. And I miss them terribly. This summer living at the hospital became easy and comfortable. I wasn't having to leave to go back to work so my whole world was at the hospital. I didn't try to balance life outside the hospital or keep up with other friends. I just immersed myself in that world. And, amongst difficult circumstances and hard days, we were happy up there. Now of course I desperately wanted to get my babies home! Especially as I knew I was about to go back to school and my ability to stay over was coming to an end. And we got them home- just in time for school starting (huge answer to prayer!) and it's awesome. It has been so good for them- they are developing in all these new ways and it's awesome to be home all together every night.
BUT, there are things I find hard about life at home with them- other than the obvious lots of responsibility. I miss having other informed eyes looking at my babies and telling me they look ok! And I am finding trying to exist now here in the 'real world' harder at times than existing in the hospital world. There, all the babies are sick and drama is simply expected. Now I come to work every day and am trying to keep up friendships and be in a world where constant medical drama isn't the norm! Instead of having my nurses to talk to who already know the background and are supposed to talk to me all about it, I'm trying to find the right balance in sharing what all is going on with my friends and co-workers without boring them, adding stress to them or just driving them crazy with updates! Not sure I always find that balance and I think I probably need to talk less about our medical issues and be more fun but, I'm working on it.
I'm figuring out how to balance taking care of my babies, spending time just enjoying my babies, teaching and grading and staying on top of that, time with Al, family and friendships and even exercise and occasionally wearing make up and doing my hair! It's not easy but I'm determined that we will get the hang of it and I'll be a great teacher and wife, mom, daughter and friend in spite of how crazy our life is- at least most of the time! So even though going back to the hospital this weekend did feel safe and almost comforting at times, I was thrilled to be back home last night and even happy to go to work and teach my students today and especially excited to go home to two babies who, despite some crazy blood pressures, are really doing very well.