Friday, October 21, 2011

10 Months Ago Today- Max and Addison's Birth Story

In honor of my babies being 10 months old today, I thought I'd write about their eventful entry into the world. Now, I have to admit I normally hate reading birth stories because they are always lots of dramatic descriptions of groaning and pushing and heads popping out and always seem way too graphic for me! So rest assured that since my babies were born via C section while I was under general anaesthesia, there won't be a lot of gushing about crowning or anything too awkward!

My pregnancy was in hindsight pretty uneventful. I guess compared to the last 10 months, almost anything would seem uneventful! But for a twin pregnancy, it went rather smoothly. The first 'scare' I suppose was when I was like 18 weeks along and my quad screening came back with an abnormal reading that could have indicated spina bifida. We had to wait like 9 days and go get a level 2 ultrasound and everything looked normal at that. The worst part of that whole ordeal was the 9 days waiting and worrying. The best part was the level 2 ultrasound was when we found out we were having a boy and a girl and that was one of the happiest days of my life. I think often about whether what showed up on that test was related to what was going on with their kidneys. I think that it probably was but given how obscure their disorder is, I don't see anyway someone could have put two and two together. And I am really very glad we didn't know. I would have worried so much for Max and Addison and been preparing for the worst and I am glad I enjoyed those last months of my pregnancy. If you had told me at 4 months pregnant what these last 10 months have entailed I would not have thought we could have handled it. Sometimes it's better just to face things as they come than sit and wait for them to come. So I am grateful for our uneventful pregnancy!

I ended up on bedrest around 28 weeks which for a twin pregnancy wasn't too shocking. My doctor did what is called a FFN test which is a test that indicates a possible increase risk of pre-term labor and the test came back positive twice in a week so I was on reasonably strict bedrest. A week later it was negative again suggesting less risk of pre-term labor so I was moved to moderate bedrest. I was concerned but never super anxious. My doctor seemed pretty optimistic I'd get to 34 weeks and while she was doubtful I'd make it past 36, I was okay with 34. In fact, the day Max and Addison were born I went to a doctor appointment and I was no more dilated than I'd been for a couple of weeks so I left really cheerful and thinking I'd make it at least a month more. I was 31 weeks exactly.

I went over to my parents brand new house that afternoon and felt really tired so I went to lie down. My dad came to check on me and was like 'get up... I want to hang out!' so I rested a bit longer and got up and went to hang out with everyone. I sat down on one of their brand spanking new (like seriously 5 days old) leather chairs and suddenly there was liquid pouring out of me. And my first thought was 'oh no, I have peed on my parents new furniture! oh no!!!' Then of course it dawned on me- my water is breaking! It was crazy and surreal because I really didn't see it coming. We loaded up the car, called Al who was home to come meet us and headed to the hospital. My mom said on the way 'maybe today is the day we will meet Max and Addie' and I was like 'no- it's too soon!'. I got to the hospital and they began this long procedure of checking that it was really my water that broke. They were like are you sure it's not blood or urinw? And I'm thinking- really I do know the difference between water, blood and pee. But anyway- there is a proper order to things. A couple of hours into this whole investigating whether my water broke or whether I really just peed my pants and created an elaborate lie to hide my embarrassment... I started feeling pain. I still was in enough denial that it really didn't dawn on me that I was in labor. I just thought I had a terrible stomachache. By the time they confirmed in fact my water had broken (or more accurately Max's water had broken), I was in a lot of pain and my contractions were coming really closely together and Max was like ready to make his grand arrival. Things happened really quickly at this point and they told me I couldn't eat or drink anything and they had to prepare me for surgery. I was really not a very good patient because I kept asking the nurse if I could just have one more Diet Coke and then I kept begging Al to sneak me one. I think I was just overwhelmed and a bit delirious! At one point Al was sitting in the room eating TWO Kulver's burgers quite cheerfully and I kicked him in to the hall because I was so enraged that he would sit there and enjoy the burgers when I was on food restrictions!

I have very little sense of time but at some point someone came and told me my platelet levels were too low so I'd have to go under general anaesthesia and all I remember was that my this point I was in so much pain I actually said, 'ok, great can you put me under NOW?' and he laughed and said it'd be soon enough. And that is about the last thing I remember. When I woke up, I was told Max and Addison were ok and Al had just seen them. He said they were little but not tiny and they were on breathing machines but that they were stable. I didn't learn all the details about their birth until much later but I know now they had to intubate them both pretty immediately after birth because they weren't breathing properly on their own. And so I think it was God's mercy that I was under general. I think it would have been terrifying for Al and I to witness that. They both responded well once intubated and by the time Al saw them they were looking good, all things considered.

Here are the photos Al took of Max and Addison that night:

MAX (above) and ADDIE (below)

I felt really groggy when I was awake and I think I just kept talking about wanting ice chips. I was in and out of sleep but frustrated because they didn't want me to come see the babies right away. Finally at like 5am, 6 hours after they were born, I got wheeled in my bed thing to go see them and it was pretty rough because I was so high on morphine that I just got really nausceous from the wheeling down and kept saying 'i'm going to throw up!' It was quite a meeting. But I got to see them and they were beautiful. I remember being scared when I was pregnant of having babies in the NICU because all the wires and cords seemed so scary and sad. But when they are your babies, you just see straight through that and all you can see is how amazing that little baby is. Now when I look back at the pictures I think 'oh they look so little and sick' but at the time they just looked like mine.
I stayed in the hospital until Christmas Day and then I was ready to go home. I was sad to leave without my babies- it was a very emotional few days. On Christmas morning Addie came off all breathing support and we got to hold this precious little baby girl and it was magical. Max actually had a pulmonary bleed on Christmas night which was a super scary awful thing. So it set him back a few days coming off the ventilator. He finally came off the ventilator after about a week and I held him for the first time on New Year's Eve. The perfect end to 2010.
So that was Max and Addison's big entrance. We really didn't have any idea then what was in store for us. We knew they were preemies and we knew it'd be a couple of months before they were term so we knew the NICU would be a part of our lives for a month or two. We had no idea they had a kidney condition- we found that out on January 17. And again, I'm glad for what we didn't know. It was already a lot to adjust to with two little preemies and all the wicked post partum hormones! God has revealed things to us as we're ready and he's still revealing things to us in stages. I kinda wish He was done revealing new things! But while there are still new challenges, there is 10 months of watching his faithfulness, of realizing how incredibly strong Max and Addison are and of seeing that you really can get through things you never would have thought possible.
So happy 10 months old to my amazing babies! 10 months ago we began a difficult journey that has been scary and sad many times but that pales in comparison to the fact that 10 months ago I became a mommy and fell in love with two little people who bring me joy, laughter, and purpose every single day. I'm forever humbled that God chose me to take care of them and so happy that my life changed forever 10 months ago today.
My sweet 10 month olds today:

Monday, October 17, 2011

Transplants- the big bean shaped light up the end of our tunnel

I would be the last person to ever dismiss the extreme importance of the kidneys. An organ you probably never even think about actually does all these incredibly important things. If there were an organ of the week award, I'd be nominated the kidney A LOT. But, as crucial as the kidneys are, I will say there are worse organs to lose! Because it turns out God gave us all an extra kidney. The wonderful thing about kidneys is you can go about your life really well with only one. And while that doesn't particularly help Max and Addie who have none right now, it does help them in the long run because their daddy and I can survive with only one. And that means our big plan is that we'll each be donating one of our kidneys to one of the twins.

Now as soon as I say that, people start firing a million questions at me so I promise I will try and answer the most common ones. First of all, 'are you even a match?'- well, I'm not sure but probably. I am a blood type match to both babies but there will be more specific cross-matching done over the next couple of months. Cross-matching actually has to be done close to the transplant because recieving blood transfusions can change it. But odds are I am going to be a better match that a random stranger so we're just working with that assumption for now. We're less sure about Al because we don't actually know his blood type. Odds are that it's the same as mine and both kiddos (as a genetics major, I can picture Punnet Squares in my head pretty well so I know the odds are in our favor) but when we start our detailed donor testing in the next couple of months, we'll confirm that. So for all of you praying for us we would LOVE prayers that Al and I are both matches so that both babies can recieve a parent donor kidney. I am praying we are not faced with the difficult situation whereby we have one parent kidney and 2 babies (while a great plotline for a made for TV movie, it's not a chapter of this story I want to face). Now we will look into other living donors if Al and I are not matches as we know my mom is a blood type match and have other relatives offer to be tested but we would love to be able to give them that gift ourselves so we are praying we are matches... and would love for you to join us in praying for that.

Next question would probably be 'who gets whose kidney and when???' Our current thinking is that we would transplant Addie sooner as she is bigger than Max, more mobile than Max and has had a harder time with fluid and dialysis than Max. Assuming I am a match, I will go ahead and donate to Addie since I am smaller and so the baby who goes first should really get the smaller kidney. Then we'll allow a few months for me and Addie to heal and fully recover and then transplant Max with hopefully Al's kidney. When exactly all that will happen depends on a lot of things. Size wise we are not terribly far away- the surgeon at our hospital would consider transplanting at 10kgs (22lbs) and Addie is currently about 9.4 (20lbs). Now that's the smallest size possible, not necessarily the 'ideal' which would be more like 12-15kgs (25-30lbs). The next big hurdle is insurance and paperwork and just all the logistical side of things. Which is where we are at currently.

Max and Addison spent 7 months at our hospital in the city and as I've said in a previous post, I LOVE our hospital. And I adore their kidney doctor. She met them when they were less than a month old and has been so positive and optimistic and supportive every step of the way. I think she is incredibly intelligent and she's also warm and personable. So we love Dr Swinford. And she is the head of dialysis patients AND the head of post transplant patients. So if we get transplanted at our hospital, their doctor who saved them when they were small and sick would be the one to follow them ongoingly. The problem is that I have an HMO insurance plan and for some random reason our hospital is in network for NICU and dialysis but NOT for transplant. Which means Aetna wants us to move to Texas Children's and get transplanted there. I have no doubt that Texas Children's is a phenomenal hospital and if that is where we end up, we believe God will have a reason for us being there. BUT, we really want Dr Swinford to oversee the transplants and we want to stay at our hospital. The lingo we are using in fighting this is that 'continuity of care would be in the best interest of the patients'. Which really just means we are emotionally attached to our hospital and we really aren't up for another big change. So we're appealing the decision and it's a big deal. And I'm fighting for the doctor I really believe is in Max and Addison's best interest. We have the financial advisor for Memorial Hermann is fighting for us and our case manager at Aetna is fighting for us and hopefully we'll win. If not, we'll head down the street to the other hospital and believe God knew better than us and that's where we're meant to be.

So that's where we are at. Despite my knowing better than to ever try and plan anything, in my head my plan is that we will try and transplant Addison around March (my Spring Break) and Max over summer. Even though that is my plan, I think it's likely we'll end up being more like Addie over summer and Max a few months after that, just because of all the logistical hurdles we're dealing with. And because they are still little so there's really not a rush. Other that the fact that transplants will be really wonderful for us. It'll give us freedom and will help the babies develop and ensure them overall greater health. It isn't a cure because transplant will involve its own issues- the babies will have to be on anti-rejection meds and we'll have to be particularly careful the first year about public places and travelling as a result. But they won't be hooked up to a machine for 18 hours so it sounds pretty amazing to us.

Another question I get a lot is about how can an adult kidney go in a baby? Well, they used to try and use children cadever (or deceased) donors but they actually found there to be more problems with that. It seemed the rejection rates were higher and the life of the kidney was shorter. While your own kidney will grow with you, a donor kidney would not. So it is actually better to have a full sized kidney so that it can last them into adulthood. Now, their donated kidney will not last them forever. At some point, they will lose functioning of that kidney and need another transplant. But it should last them 10-20 years and maybe longer. So it will give them the chance to grow up and hopefully be young adults before facing that. Which is one of the reasons why we are so keen for a parent donor as it would likely give them longer- more like 15-20 years than 10-15. And even though obviously Al and I's kidneys are bigger than theirs, surgeons are very skilled and do manage to fit it in!

When we first started talking about this idea of donating a kidney it seemed really daunting. I remember Al being so saddened by the idea of me having to go through a surgery on top of everything else. But, for one thing we've watched our babies both have a kidney removed twice and so we can't imagine how we could not face something that they have already so bravely faced. The surgery is done laproscopically and the recover times are relatively short. I would be able to be back at work within 2-3 weeks. The recovery would be easier than a C section and I survived that! The worst part would be that Al or I wouldn't be able to lift things 20-30lbs for about 3 months. Which is hard when you have 20-30lb twins that you love lifting and carrying! So that is why we would make sure there was at least 3 months between their transplants so that one of us fully able to do that stuff while the other is healing. But honestly, even with it meaning surgery and time off work and recovering, I want nothing more than to give one of the babies my kidney. We spend a lot of time wishing we could do more for them and it would bring us great joy to give them the gift of a kidney.

So that's where we are at with transplants. I feel really excited that we are in the process of working on it. I know it's a huge deal- big surgeries and lots of nervousness about who will donate and worrying about rejection and so forth. But for us, it really is the light for us right now. Dialysis is hard and it's limiting and it helps us to know that it's temporary. The future is bright and we're positive about what lies ahead. We know that our lives will never be normal and as I've mentioned before, we are ok with not being normal. After all, no one is! We're all different and crazy in our own ways! But in a couple of years, Max and Addison will have a kidney and dialysis will not be part of our daily life. Max's airway will have hardened and he won't be turning blue. The babies will have hearing aids or implants that enable them to hear. It's going to be a lot of work to get there and it won't always be easy but we're doing everything we can NOW to ensure the best possible future for them.

And in the meantime, we are also enjoying every day now with them. I have been determined not to live longing for the future and completely miss the joys of the present. When the babies were in the hospital, I spent as much time holding them and loving them and enjoying them then as I could. Because those days were precious. They are growing up and my time with little bitty babies is over so I am glad I soaked up those moments. And they are just so incredibly fun and cute and social now and we are loving our time with them at home. Being on dialysis does not stop us from having a wonderful time with them. Yesterday morning Max and I cuddled up on the couch and he cooed to me and smiled at me and we spent an hour just hanging out with each other. And last night while we watched TV, I lied on the floor and played with Addison for hours while she rolled all over the place and blew raspberries and giggled and smiled. We take advantage of every moment of time with them and soak them up. Because yes, the future is bright and yes, we are excited about transplants but we are also loving today.

Some pictures of me loving my babies this weekend...

Tuesday, October 11, 2011

Tracheomalacia- better known as "OMG, Max is turning blue!!!"

You're probably going to think I'm making it up when I tell you that Max has another completely unrelated rare medical problem. You're going to think I'm just trying to add stuff to make my blog more juicy or that I'm like a crazy hypochondriac mother who invents medical issues! But then if you come spend a couple days with us, you'll start by pointing out to me that Max is coughing and probably make a good joke about he sounds like an 80 year old with emphysema (he does and you would be like the 50th person to say to him 'Max, you gotta give up the pack a day'!) and then we'll try and explain about Max's airway and you'll think ok no big deal and then give us a day or two and you'll be yelling 'OMG, Max is turning blue!!!" and then you'll believe me that in fact we do have a whole other issue we deal with Max!

So from the day Max was born, breathing has been well, a struggle. Both babies were on ventilators for a couple of days from being so premature but Addie was breathing all on her own (or in hospital lingo 'on room air') at 3 days old. We first tried Max on room air or without assistance when he was 2 and a half months old and he finally came off a canula for good when he was just a couple days shy of 4 months old. In between we would try to give him less assistance and he would do great for a while and then he would drop his oxygen stats and start to turn blue and we'd crank up his breathing assistance, There's medical terms for this- bradycardia and apnea- but on the day we moved to the big hospital, one of our favorite nurses Emily who we got to know and love over the next 7 months, had Max and called it a 'Max Attack' and it stuck. So we now had a cute term for when Max would stop breathing but we still didn't understand why. We had lots of tests done including MRI and EEGs and couldn't find a neurological basis for it. The doctors and nurses started to suspect it was more of an airway issue than a lungs issue so when Max was a little over 2 months old he had a bronchoscope where they put a camera down his airway to observe what is going on.

And we got our diagnosis- tracheomalacia which in essence means that he was a floppy airway. Although I normally hate to plagarize and try to put things into my own words, I thought I'd include a paragraph from MedlinePlus Medical Encyclopedia...

"Tracheomalacia in a newborn occurs when the cartilage in the windpipe (trachea) has not developed properly. Instead of being rigid, the walls of the trachea are floppy. Because the windpipe is the main airway, breathing difficulties begin soon after birth...Breathing problems that get worse with coughing, crying, feeding, or upper respiratory infections...Congenital tracheomalacia generally goes away on its own by the age of 18-24 months. As the tracheal cartilage gets stronger and the trachea grows, the noisy respirations and breathing difficulties gradually stop. Congenital tracheomalacia is very uncommon"

So I think that is a pretty good summary. It has nothing to do with his kidney issues and although probably related to his prematurity, is a very rare condition, even in a preemie. The good news is that, as you can see above, it will resolve itself! No surgeries, no permanent impacts. Which is awesome news since his kidney condition and hearing loss have lifelong implications. You'll also note the paragrph almost cheerfully states it goes away by 18-24 months which if you ask us is AN INCREDIBLY LONG WAY AWAY!!! So for the next year or so it seems, Max's floppy airway is part of our life.

What the paragraph doesn't really do justice to is how dramatic it can be. It makes 'breathing difficulties' sound all casual. The most obvious symptom of his tracheomalacia seems to be his hacking cough. When his airway is closing on him, Max tends to cough it open which produces this really dramatic sounding cough. Any doctor from any specialty who would walk through their NICU room would always seem very troubled by Max's cough... like they were pretty sure he might have tuberculosis or whooping cough and we were just oblivious. Max coughs a lot. He's not sick. He just has a mighty cough. Particularly when he eats. And the cough really is not an issue. The real drama begins when he tries to scream. Max can fuss or whine or even cry a little and he's fine but if he gets really mad and tries to really cry or scream, his airway shuts on him and he stops being able to breathe. His little body goes all stiff and he has this sad mouth open wide like he's screaming but no noise coming out look. And since he's not breathing, he goes from angry red to purple to blue. And trust me, it's scary. People who have to draw blood from him, give him shots, or do anything that angers him and have witnessed this always look petrified when he starts doing it.

Which probably makes you wonder what is he doing chilling out at home with us? Well, Max being home is a wonderful miracle and blessing. There were many times when we had to talk about a tracheotomy or putting a hole in his throat to create an always open airway or about having him stay in hospital until he can go a week without a Max attack (he can go a day or two now but not really close to a week yet!) In the end though, Max's attacks are all about managing them. A nasal canula doesn't really help because if his airway is shut, blowing oxygen is his nose doesn't help terribly much. So all you can really do is get him to calm down. Because if he stops being mad and relaxes, his airway will open back up. So we pick him up and pat his back and try to get him to look at us and soothe him. And most of the time, this works pretty quickly and he calms down. Sometimes he stays mad for longer but eventually just wears himself out and gets this troubling almost passed out expression and will then start breathing. Very rarely he gets super mad, finally passes out and then forgets to start breathing again. Then he have to use an ambo bag and push 100% oxygen in really hard and force his airway to open up and trigger breathing again. This, thankfully, is very rare. It has happened twice since he's been home. Both times because we put a feeding tube down his nose which he HATES. But I will tell you both times were two of the most panicky scary moments of my life. BUT, we did it. We were able to very quickly get him breathing again.

So Max is home because we are actually the best people to help him because he feels soothed by us and because we've seen it happen so many times now, we don't panic (most of the time!) and are able to calmly reassure him and get him to calm down and breathe again without any help. And on the 2 occasions we had to help him more, we are trained to do that and can. So we believe we are the best people to help sweet Max over the next year until he grows out of this. It's just a big deal. Al and I have never left Max with his grandparents and so for now, we aren't able to go out just Al and I because one of us needs to be with Max at all times and we always take his ambo bag and often his oxygen when we go places. We don't drive anywhere alone with him because we want someone in the backseat- just in case. So Max going out is just a big deal. And really like 99% of the time, he's totally fine. But we can't take our chances and leave him with anyone else or just load him in the car without all of that. Lately i've gone a few places- to a baby shower, out to eat, up to school or to a friend's house and just brought Addie. And I feel bad because people are like 'where's Max? he didn't get to come?' and I worry people think I'm favoring Addie by taking her out. It's just that I can't take Max out by myself and so Al has to come too and it's just a bigger deal and harder to pull off. And with Al's mom here, she and Al have been really good about taking Max out on special trips with the two of them while Addie is at extra doctors appointments or with my mom. So we are making sure he still gets to do stuff. It just kinda takes a village with these two!

I'll have to write another post at some point about 'developmental milestones' because it's really a whole different story. But the short version for now is that Addison has some minor developmental delays- she is actually doing really awesome for having been born 2 months early and having lived in the hospital for 8 months. She is hitting targets around her 'adjusted' age (meaning she should have been born 7 months ago so she is developing the skills that a 7 month old has). She's sitting by herself, rolling all over the floor to get to her favorite toys and really trying to crawl. Max is much more significantly delayed. He can push his head up but cannot hold it steady and he can reach at things but is not always able to grab them. We don't really know what the difference between them is or exactly why Max is more delayed. We've had brain scans done and his brain appears perfectly normal so there's no clear reason. His tracheomalacia did mean he was on a lot of oxygen support for his first few months of life and more confined to his bed. He had lower amniotic fluid while in utero and Addie spent her 7 months in my belly kicking Max down and trying to take over. His airway problems mean he uses more energy breathing and he has had periods where keeping his oxygen levels up on his own is difficult. But, for whatever reason, he's just behind where he should be (which is no big deal) and behind where his twin sister is (admittedly, a little harder). But he's got a great new physical therapist who is super positive and really believes in Max and thinks he'll be caught up by 2. And neurology will check on him in a couple more months just so we can keep making sure we're not missing anything.

Oh but sweet Max- if you have had the pleasure of meeting him, you would know he is the most delightful baby. He has the sweetest disposition. Which is awesome because if crying triggers an episode, we are so thankful he rarely cries. He has so many reasons to be grumpy but he's just the happiest little boy. He loves people and he loves being held. He is really the sweetest baby. His sister is equally as gorgeous but fiery and hilarious- totally different personality. Max is our cuddler. And his smile is the most beautiful thing. When I get home every day and he sees me, his whole face lights up. My babies are both miracles (and all babies are!) but oh, if you had seen how hard Max's first few months are... and then see how awesome he handles everything now.... wow. He amazes me. He's got a lot of medical issues but I know God made him perfectly and his body may have its weaknesses, but his heart and little soul are just flawless. He melts my heart.

Monday, October 10, 2011

Blood Pressure Drama and Life outside the hospital

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.

Thursday, October 6, 2011

The Results

Well, we had our hearing test which was almost humorous in what a big deal it was to pull off. We had lots of trouble getting the right kind of appointment and so we finally got set to have this sedated hearing test which meant the babies needed to be asleep for it. So the doctor wanted us to give this heavy duty sedative and told us we had to call our pediatrician and request it. So, our pediatrician is pretty cautious and was like sorry not giving you hard core sedatives, ask your nephrologist. So we asked Dr Swinford who, thankfully, was unwilling to risk any problems from heavy sedatives with the babies histories of heart and respiratory issues. So she said they could have tylenol and nothing more. So the audiologist said we just had to wake the babies up early, keep them awake all morning and give them tylenol when we got there. So it was quite a day and we were amused by the grandparents in the back seat on the way there trying so hard to keep the babies awake, using every trick in the book. We nearly didn't get Max's test done because he was like refusing to go to sleep! Al's mom had the magic touch and so Max ended up having his hearing test while in his Marnie's arms (and I think she's got sore arms today!) Addie got pushed around in the stroller while Max went and fell asleep so it was a bit easier with her.

So they did this brainwave test and it was pretty interesting. The doctor would administer clapping like sounds through earphones at different decibels and check their brain for a certain wave response. And they would repeat it several times at each decibal and hope to see a similar wave each time. If they do, it means their brain received the sound signal. If they have just looks like random ups and downs and is different each time, it means they did not hear the claps. They start at 80db which is really loud- like the sound of a blow dryer, blender, lawn mower, traffic etc. Last time when they did the test after surgery, Max and Addison did not show a hearing response at 80dB which means their diagnosis from that test would have been 'profound hearing loss'. If they don't hear at 80, they won't hear anything quieter either. So this time we started with Max and he did hear at 80- very clear brain patterns. And he also heard in both ears at 60db as well! He could not hear anything below 60. If they tested me, I'd be able to hear at 50, 40 and 30db, as well as 60 and 80. They described 60 to me as the volume I probably talk at when teaching to my whole class. So some speech is at 60 dB but quite loud speech. At 60dB, they could hear themselves cry or squeal and probably laugh. When I say their name loudly they can hear it. Sometimes they can hear loud conversations. We think it's why they love my Dad because I'm pretty sure his inside voice is probably 60db! But they don't hear it loudly. Someone talking loudly probably sounds like whispering to them. And they probably can't hear their own coos or bables, which is why they are generally pretty quiet babies.

Addie's results were similar, except they couldn't get a wave at 60dB in her left ear. They did get one at 70dB which is above speech but loud sounds like alarm clocks and so forth. So she has a weaker ear but her right ear can hear what both of Max's ears can hear so in terms of treatment and overall diagnosis, their hearing is very similar. It looks like their diagnosis would be moderate hearing loss or moderate severe hearing loss depending on how many classifications are made.

And it is definitely good news that they can hear some things and we are happy the results were better than last time. We feared they would have profound hearing loss so moderate is definitely better. In terms of development though, they cannot hear speech clearly enough to really develop language. most speech they don't hear and that which is loud enough for them to hear would sound really quiet to them making it hard for them to learn what words mean. And because they cannot hear their own talking most of the time, their speech would not develop properly. So, they definitely need some help.

What help will work is hard to know. If they had profound loss, we would know they need cochlear implants. If they had severe loss, we would try aids but suspect they'd end up needing cochlear implants. If they had mild lost, we'd be pretty sure hearing aids would do the trick. But it's a bit of a debate with moderate loss. Hearing aids would amplify their hearing and definitely enable them to hear their environments, hear people talking and be aware of noise. They may not be able to make speech sound normal for them. There's this whole confusing speech banana thing that looks at the interface between volume and frequency. And different speech sounds sit differently on the banana. And hearing aids should enable them to hear that people are talking to them but may not pick up all sounds. For instance, the sounds 'f' and 'th' are really high on the speech banana so aids may not be able to pick these up for them. Which would be less of an issue if they were 10 year olds or adults who already have developed good speech and know what words mean. For babies, it may compromise their ability to understand and say all words. Especially with Addie's weaker ear. hearing 60db was really important for aids so the fact that she can in one ear but not the other may be enough or may not. And so we'll try hearing aids because surgery is a big deal (even for us who have had A LOT of surgeries!) and work with speech therapists and try and determine how effective they are. and give them some time with that. And if it doesn't work, we will get cochlear implants for them. And given the nature and likely cause of their hearing loss, they should be excellent candidates for those to be very effective. And we'll teach them baby sign so they can learn other communication skills as well.

As far as how we're feeling about all this, it's hard to say. There were no dramatic tears or breakdowns! I was able to talk really calmly and rationally with the doctors and I was very proud of that. I got a lot of good information. We were relieved that they heard something. I wouldn't say we were happy about the whole thing because accepting that your children have hearing loss and having to discuss the plans for dealing with it- which will be difficult- is not fun. It's sobering and sad and so it wasn't a happy or joyous experience. But it wasn't a traumatic and devastating one either. We're praising God for that which they can hear and thanking him for improved results. And we're just in the process of accepting and dealing with the loss that they do have.

Oh and in other news, Addie's first tooth broke through her gum yesterday- you can see little white poking out of her bottom gums. So we're excited about that. We all took turns feeling her little gums and getting her to smile so we could see it. We came home and enjoyed all the wonderful joys of parenting and cuddled and played with Max and Addie and laughed and smiled over Addie's tiny tooth. They had no idea we found out they have hearing loss- they were just as happy as can be, smiling away. They got to go to the hospital and not get blood drawn! They got to see people they knew! Addie visited Erin and saw Dr Jones (her doctor who took amazing care of her when she got sick in July)and Max saw Julie his favorite dialysis nurse. For all they knew it was a great day! So we followed their lead and smiled and laughed. Because despite all medical problems they have, they don't let it keep them from being blissfully happy and so neither will we.

This is a picture of the speech banana. The best way I can explain it is to find the line for 60db on the right side and everything under than line, Max and Addie can here. And everything above that line, they cannot. With hearing aids, we 'should' be able to get them up to everything around 40 or maybe even 30db.

Tuesday, October 4, 2011

Hearing Tests Tomorrow- Please Pray!

All you have to do is which the ads for medications that are on in every ad break to realize that in the world of medicine, there are a lot of trade offs. Very few medicines are all good. There are always those side effects. When Hannah was studying medicine, she would always read me about side effects like ‘sudden death’ and we would laugh wondering why would you ever take a medicine whose side effect was sudden death?! Anyway, Max and Addison have taken A LOT of medications in the last nine months and they are still on a lot of medications. And side effects are just part of our existence. The sodium chloride and iron we give them makes them throw up. But it’s worth it so we just clean up a lot of vomit. And in general we try not to google side effects because it’ll tell you a whole lot of scary stuff that will probably never happen. So we take the medicines we need, pray for the fewest side effects possible and deal with those that we do get.

Which is fine when the side effects are vomiting. It’s a more difficult situation when you are faced with what are dealing with right now- hearing loss. I can’t tell you exactly what medication damaged Max and Addison’s hearing because we don’t know. It is probably the lasix diuretic they received such high IV doses of for months with their albumin transfusions. But it could be the IV antibiotics they received while critically ill. It could even be unrelated to medicines. There are other hypotheses as well. In our minds, it is a side effect of medication but we’ll never know for sure. What we do know is that when Max and Addison had their hearing tested at 5 months old, they couldn’t hear. Why is something we do not know and something that, in a way, doesn’t matter. Max and Addison received medications that saved their lives. And one day when I get to heaven, I won’t waste my time asking God why they lost their hearing… I’ll be too busy thanking him for saving their lives. So we won’t know why.

What we will know is the extent of their loss. We will know that tomorrow. After they failed the initial hearing test, we scheduled a better more accurate test for June 25, the day they had their second kidney removed. The ABR test is an actual brainwave test and it is better done sedated so since they were already under for surgery, it just made sense to do it that day. And I really thought they’d tell us they still hear something. Max and Addison seem responsive. They make noise. They startle sometimes. They turn to their names- sometimes. I suspected they had some loss but I also expected them to hear. So when Max returned from surgery during Addie’s surgery and we were told that they saw no indication of hearing, I was devastated. Completely blown away with sadness and shock. And I cried and cried and just couldn’t shake my disappointment. Our wonderful nurses comforted me and tried to help me see how much we had to be grateful for that day; both did amazing in surgery and came back off a ventilators. And I missed the rejoicing for that because I was so sad they couldn’t hear.

The audiologist who did the test told us he wanted to repeat the test in 3 months and that he couldn’t be sure of the results given they were in an OR and under general. He said they will have significant hearing loss but what exactly they can hear is hard to tell still. He gave us some hope that when we re-tested, the results could be different. So we moved on in a way, or really our life moved on at such a pace, the hearing issue fell into the background. Addie became very sick in the next couple of weeks and all our attention fell on her heart and how it was coping with fluid changes in her body. One day in July she had to have surgery to get another central line for IV heart medications and it was a really scary time. The doctors diagnosed her with congestive heart failure and we believed she would get better soon but had yet to see it happen. And she was miserable. And that morning I said to Lori, her nurse, that I didn’t care anymore if she couldn’t hear, I just wanted her to get better. I wanted her heart to be ok. I felt foolish for my tears over hearing when now she was fighting for her life. And, as you know, she did get better. Then worse. And finally much better. And her heart recovered from the whole incident and she is handling dialysis well now. And I’m so grateful. I’m grateful for her and for Max and that they are home and alive.

So I definitely have better perspective this time. I know that no matter what the results are tomorrow, it is not a matter of life and death. And we’ve done life and death enough times now to appreciate how awesome it is that we are not dealing with life or death. Having said that, of course I care. I want very much for them to hear. They are my babies and I want everything wonderful for them. I want them to enjoy music, to hear me tell them I love them, to be able to use their voices to talk and sing and tease each other. I want them to hear because I want them to have the happiest life possible. And if they don’t hear anything now, I still believe they will one day. If we’ve learned anything it is that God uses medicine to work miracles. So I believe that through cochlear implants or advanced hearing aids, there is a lot of hope for hearing in the future. So the results tomorrow are just the beginning of a process and not a final verdict. Still, I won’t deny that I will be crushed if they can’t hear at all. I will be sad for that loss in their lives and for another difficult journey we will have to head down to deal with that. I think any parent would be sad in those circumstances.

Last time when I was devastated I kept saying ‘but I wanted them to have a normal life after transplants’. See, in my head, as hard as things are right now, they always seemed very temporary to me. I think I had built up this fantasy land of life with transplants and once we got there, all this would be in the past and they’d just be like everyone else! And facing the fact that even once they have a kidney, they will still have hearing loss was hard for me. We talk a lot about how glad we are that Max and Addison won’t remember what all has happened to them so far and we like the idea that dialysis will be something we tell them about when they are teenagers and not something they remember hating. And I think I feel like not being able to hear will be a permanent reminder of just how dramatic their first couple of years of life were. So that made me sad. But I’m feeling differently about that now. I’ve really accepted that while I want great happiness and every possibility for Max and Addison, I no longer desire ‘normalcy’ for them. I don’t mourn that their lives will never be normal. I’m ok with the fact that our family will never be like everyone else’s and I want to raise them to not long to just be like everyone else and to embrace their history and their story.

I think because I teach teenagers I see every day how much being normal is valued by teenagers so I worry about that. So I know that my responsibility is to make sure Max and Addison see their history as a special part of their story and a part of what makes them so amazing. And that it isn’t something they need to be ashamed of or want to pretend didn’t happen. And that includes hearing loss. They will at least need hearing aids. They may need cochlear implants. They may end up using sign language or lip reading or other communication strategies. We don’t know exactly what the future holds. But it probably will mean something that makes them different. But that’s OK. Because their scars and their reminders will just be what reminds them how strong they are. So, yes I wish for them that they had perfect hearing and I am sad for them… just as I wish for them that they had kidneys that worked. I would give anything to spare them what all they have to go through. But while I am sad for them having to go through extra things, I am not sad that they are different because they are amazing to me. They have a strength and resilience that I am in awe of. And I already know that God has amazing plans for them. Different plans. Ways of using their lives in a way that He can’t use anyone who hasn’t been through what they have.

All that is to say… please pray for us tomorrow. I’d love you to pray they can hear something because that would make treatment easier. We had some less sensitive tests done a couple of weeks ago that gave us hope they may hear at some frequencies. That and the fact that they do seem to respond to sound does give us hope that the results will be different this time. But, they also may not be and we may learn that again they showed no brain response to sound. So, please pray for Al and I as we face this. Pray for peace and strength. For wisdom as we plan the course ahead. I’ll let you know the results when I am ready to write about it which may be right away or may be a couple of days. I figured I could write this post a lot better before than after so I wanted to get their story out. And ask for prayer. Because it’s another big day for us so we could really use it! Thanks!

Monday, October 3, 2011

So what exactly is dialysis???

I tend to just talk about dialysis with people as if everyone in the world understands what dialysis is and then I remember that up until about 4 months ago, I had no idea what dialysis is or that there are two types or much of anything. So rather than continuing to put facebook posts up about hernias or draining or home machines or transplants and confusing people, I thought I should actually try and explain at least the basics of what is going on with Max and Addie's kidneys or now lack thereof.

When I get around to writing about January, I will explain the story of how Max and Addie got their diagnosis but basically we stumbled upon it while they in NICU for being preemies following some bloodwork to try and understand some unrelated respiratory issues. Labwork showed that they had protein in their urine and low 'albumin' (an important protein) in their blood. Lots of heads get together and repeat these tests on Addison and diagnosed them with 'Congenital Nephrotic Syndrome' which is a very rare autosomal recessive genetic condition that Al and I were, unbeknowst to us, both carriers for. Their condition has nothing to do with them being early or them being twins. If they had made it to term, they would still have had their kidney condition. Any baby Al and I have would have a 1 in 4 chance of having this condition. The fact that both of them had it- well, that's just unlikely odds. 1 in 16 chance of it happening and it did... thus proving probability doesn't always predict reality.

So what is congenital nephrotic syndrome, other than a real mouthful? Well, to understand it, you need a basic understanding of what the kidneys do. So your kidneys filter your blood to remove wastes and excess fluid from the blood and turn those into urine. Your kidney is like a colander with very specific holes that remove the bad stuff without taking out the good stuff. Well, Max and Addison's kidneys were like a colander with huge big holes. They filtered out all their good stuff with their wastes. In particular, their kidneys filtered proteins out of their blood where they belong and put in their pee. So when the doctors first told us this, we were like oh well, they lose protein... big deal. Yeah, turns out it is a HUGE deal! Proteins are super important for growing but more importantly are two proteins that were the biggest problems for us. One is a protein called albumin which makes up blood plasma and the role of albumin is basically to be blood glue and hold your water in your blood vessels and keep it from leaking into your tissues. If you do not have enough albumin, water will seep out of your blood and into your tissues causing you to be both dehydrated and very puffy all at once! A healthy albumin level for a baby would be around 3.5-4 and when we tested Max and Addie's blood at 3 weeks old, their levels were around .5 and soon after that, we started to see their little hands and feet and faces puff up with fluid. Untreated, they would accumulate fluid in their lungs and not be able to breathe. The way around this problem is to give them albumin transfusions to replace the plasma protein their kidneys are losing. And of course we can't just give it to them once because what goes in their blood will go through their giant collander kidneys and end up getting peed out. So Max and Addison had to recieve albumin transfusions (each of which took about 2 hours) two or three times a day. Following each albumin dose, we gave them lasix, a diuretic that helped also maintain fluid balance.

Ok, confused yet? Well, their need for albumin was what kept them in the hospital. What scared us to death was the fact that their kidneys also dumped out their antibodies which are the proteins that fight infections in your body. If you were to google 'congentical nephrotic syndrome' (which I do not recommend), it would tell you about high mortality rates. And the primary reason for this is that losing antibodies leaves you very immuno-compromised. Which is something we learned early on when Addison went from bottle feeding and being alert and seemingly healthy to stopping breathing and being put on a ventilator when she was 3 weeks old. And again a month later when Max got a UTI that caused his whole body to shut down and nearly became too much for his little body. Thankfully, our amazing nephrologist Dr Swinford (their kidney doctor) and a wonderful doctor named Dr Pacheco who was an immunologist together created this plan to give Max and Addison infusions of antibodies. I have no doubt that God used this (called IVIG) to save our babies lives. After both having serious life threatening infections in their first two months of life, they both remained infection free for the next four months while recieving this treatment. The power of prayer and amazing medicine.

We reached a breaking point in April when we realized this is how it would be. Max and Addison would require a central line or central port and would need at least two IV transfusions a day. And while all this was working, at any point they could get an infection and not be able to fight it, stop growing or get a blood clot. So we were trapped where we were and at constant risk of things getting worse. And ultimately it just was no way for Max and Addison to live their lives. We needed to get them home. But the only way to stop the protein filtering would be to remove their kidneys. Which is all well and good except well, kidneys are kinda important! No kidneys means wastes build up in your body and more troubling (as we've come to learn the hard way), fluid builds up in your body.

And just quickly because it is everyone's first thought- what about transplants? Well, transplants are definitely our plan for Max and Addison but for right now they are too small still. I will write a whole post just about transplants soon but for now, the babies will need to be around 25 lbs to get a kidney. When we needed a new plan in April, they were only 10lbs. Now they are 20 so we're definitely getting there... but in the meantime, there is dialysis. The thing which I have a total love hate relationship with. I hate it because it's difficult and confusing and so lifestyle restricting. BUT, right now dialysis is saving my babies lives every day and enabling them to grow and stay healthy and get ready to get a kidney so how can I feel anything but gratitude and love for dialysis really?

So that brings me to the title of my post- what is peritoneal dialysis? Well, dialysis is a process of filtering the blood of waste and water. The most common way of doing this is called hemodialysis which actually removes blood and runs it through a machine several times and replaces it all without the excess fluid and waste. Generally this can be done 3 times a week. However, it is just too hard on little babies who have smaller blood volumes. It can require them to recieve a lot of blood transfusions which complicate transplant down the road and involves a lot of fluid swings that are hard on their bodies. So hemodialysis is not the best choice. So instead we do something called peritoneal dialysis. It actually involves putting sugar water in the babies' abdomen (inside the abdominal wall, a membrane called the peritoneum), leaving it there for an hour and relying on osmosis and diffusion to naturally pull waste and fluid out of the blood and into their abdomen. After an hour, the sugar water is now more watery and contains waste so we then drain that fluid out. And we put more in and start the whole process over.

Thankfully a machine can do these steps on its own- we set up the sugar water we want for them and attach them to the machine by their catheder (a tube that was surgically placed in their abdomen in April) and then the machine pushes fluid in, waits, and then pulls it out. This process can be done manually in the hospital but at home their machine does it. And in theory, the machine should be able to do this 'overnight' and then we can take them off the machine during the day, go about our business and then start over. Well, we're not quite there yet as currently 'overnight' is actually 18 hours so we're on it a lot still. But we do have 6 glorious hours off!

I guess what we find most challenging is trying to figure out how much fluid should we pull. See how sugary the water you put in determines how much water you pull off. And while your kidneys are super smart and sensitive and can deal well with you drinking more or less... with dialysis we just pick an amount and hope it's right. And now that they are home, Al and I are the ones deciding all that every day`(with plenty of advice and help from our wonderful dialysis nurse). And we've certainly gotten it wrong many times so far and sometimes it's not a big deal and sometimes it is. So at the moment, we spend a lot of time setting up dialysis and being on dialysis but I don't mind that. What is hard is the responsibility, the decision making, and being the ones in charge. That part is scary. But we're doing it and God is helping us through each day and we might even start to get the hang of it one of these days!

Ok, so that's my very long and at the same time skimming the surface overview of Max and Addie's renal issues. I'll add more as we go and there's more medical stuff and more implications of dialysis for another post. But for now, at least I feel like I've covered the basics of what exactly was wrong with their kidneys and what in the world dialysis is! And just to add a visual of what their machines look like, here's a picture.

Then and Now Photos

I love photos of my babies! Of course I love photos! All parents love photos of their babies! There were times when I didn't love photos... when the babies were really sick, I usually didn't let people take photos. There were many times when one of them was on a ventilator or when they got really puffy and it broke my heart to see them sick. And I didn't want to remember them like that. I wanted to survive what was going on and then forget about it. But now when I look back, I don't mind the photos of our harder days and wish I had taken more. Because they are a testimony to what God has done in their lives. They are a reminder of how far Max and Addison have come and how faithful God has been to us. They are also a reminder of wh at we've come through. On a hard day, it helps to know we've been through worse and we're still smiling and we're still laughing. So the visual reminders of what we've been through are important to me now. So here for you- our tiny little fragile preemies and our huge 9 month olds!

Max at 14 days old, 3lbs 15oz
Max at 9 months old- 19lbs
Addison at 3 days old- 3 lbs 15 oz
Addison at 9 months olds and 20lbs!

Max and Addison's Blog has Begun!

Creating this blog has been on my to do list for way too long- about a year I guess. And I just keep seeing it as this incredibly daunting task… how do I describe our life? How do I go back and tell the whole story? Do I want to go back and relive all of it? What photos should I put up? How do I let people know about my blog? When will I ever actually have time to keep it up> And for all those reasons, it just keeps staying on my list of things I should do rather than actually getting done…

But now here I am- doing it! I really want to keep a blog because I have been blown away by the concern, interest, compassion, friendship and love bestowed upon our family and I want to keep people more informed. And my Facebook posts are just getting a bit ridiculously long these days! There’s just too much to fit in a short update and too much that I only really want people who are actually interested to know about and not every random person I may have met once to be subjected to!

So it’s going to take me a while to get through the history so I plan to just cover things as I get time because I will never actually publish my first post if I try to cover all of it at once. For today I’ll give an overview and the details will just have to wait! I suppose a lot of my readers already know most of it anyway so no harm in diving into the present- which is, by the way, a way happier place to focus on anyway! Max and Addison are 9 months old. They are living at home and they are happy and we love having them home and starting to feel like a ‘real’ family! We are going out more- last week Max went to the eat bagels, to Starbucks and to the grocery store and Addie went out to eat and shopping. We’re getting a routine and feeling less overwhelmed. We still have lots of crises and drama but amidst it all, there is such great joy in our lives.

I am working on a month by month overview of the past 9 months but until that happens, the short version is that Max and Addison were born 9 weeks early and while they were in the NICU being preemies, we discovered through blood tests that they had a rare genetic disorder that caused them to dump important proteins including antibodies that fight infections into their urine. Once we knew this, we moved to the big hospital in the city where we had the most amazing team of doctors and nurses working hard to keep Max and Addie alive and healthy and happy. Both babies had central lines for IV meds that helped replace what their kidneys were losing. By April we realized they couldn’t come home as long as they had their kidneys because they were too vulnerable. So we made the difficult decision to begin the process of removing their kidneys. We started with taking out one and putting in a dialysis catheder for once their second kidney was gone. In late June, when they were 6 months old, their remaining kidney was removed and we began dialysis. Lots of drama ensued including a period of a couple of weeks when Addie was very sick. They fought, we prayed and God provided. 2 months later, Al and I were trained and we brought them home.

And now they are home on dialysis which is crazy and busy and scary and difficult but they are home. And happy. And so it’s ok. We’re hoping to transplant them each with one of our kidneys in 6-12 months but that’s a whole different post. Al is home with them every day and I’m working because bills don’t pay themselves. And we’re just figuring it out one day at a time. Our life isn’t like anyone else’s and of course we have days of feeling overwhelmed or sorry for ourselves… but on the whole, we just feel so blessed. Our babies are amazing treasures. They are miracles- constant reminders of what God can do through medicine. We love them more than you can imagine. They are amazing fighters, they are resilient like you wouldn’t believe and they are just so beautiful and such a blessing.

So this will be my place to share our journey with you. To go into more detail about dialysis and their histories, for people who are interested. To bombard you with photos. To share prayer requests. For those of you have been praying for us and encouraging us already, we cannot thank you enough. For those who are new to our journey, welcome aboard… it’s a crazy, scary, and fabulous ride!