Amazing Addie's Awesome Transplant!

I do apoligize that I have not updated this blog.  I know I can pull the surgery card (which trust me, I plan on doing plenty of for the next couple of weeks while I can!) but really I should have done it at least a few days ago.  Thankfully with Facebook most of you have known that we have had a wonderful week and that God has been so good to us!  Addie is the most remarkable baby! She is strong and a fighter and resilient but she also has been prone to some weird and serious complications so we were optimistic but cautious going into the surgery.  And thus far, Addie has been nothing but amazing and strong and perfect!

On Tuesday I went to surgery around 830.  They kept moving my surgery time so I was enjoying some time with Addie in her room and I was actually sitting up in her crib with her and the anaeastheologist came in to tell us that they were ready for Addie early and was shocked to see me in the room! So she started calling everyone shouting 'the donor is in the baby's crib!' really loud!  It was quite embarrassing! I was like can you not just say I'm in her room lady?!  So anyway I jumped out and had to make a very quick goodbye which may have been easier and I got the express lane treatment into surgery.  I was grateful not to have a lot of time to think about it before it was happening. 

And the next couple of days were a total blur.  I remember coming out of surgery and seeing my parents and aunt and I remember one of the best moments of my life when they told me that Addie was 'flooding with pee' right away.  I knew then it had worked!!  My aunt listened as I made some very drug fueled euphoric phone calls to Al and my best friend saying 'I'm so happy!' over and over!  It was a wonderful feeling that we had done this and Addie was making urine!

The next day Wednesday I had a rough day.  I really struggle with pain meds and was having terrible nausea and then they gave me a medicine to help that and I had a reaction to it and was shaking and had to get oxygen and they called my parents to leave Addie and come to see me and that was the only time all week I was genuinely terrified.  But it passed after about half an hour with some IV Benadryl and I slept the rest of the day and recieved the unbelievable news that they were extubating Addie 24 hours after her surgery!

We had been prepared for a 4 day ventilator time and I had dreaded that so much! And Addie's new kidney made so much pee they didn't have to worry about fluid overload at all and she did so well breathing over it that they pulled it within a day.  Due to my own issues I didn't even actually see Addie until later Wednesday once she'd been extubated!  All my worrying about seeing her intubated and I never did! By Wednesday evening, I was feeling a bit better and Addie was totally showing me up sitting up in her bed playing with toys!

And since then it's just been all good.  I've gotten stronger and less pathetic!  I was surprised that the surgery on me was harder- clearly I either remembered my C section being better than it was or it was just a way easier surgery!  Anyway I felt better Friday and was excited to be discharged as I did not enjoy my shared room or the every 8 hour Heparin shots associated with being inpatient! I'm balancing wanting so much to take care of Addie and give my mom a break with needing to rest.  My parents are being amazing and really taking excellent care of Addie and I and by tonight, I'm really starting to feel okay. 

Addie has had no medical issues.  She's doing everything she should be doing.  There is lots of studying numbers and adjusting medications and it's easy to worry about the details but big picture, she's amazing.  The surgeon himself said he couldn't remember a baby doing this well.  And he finishes every summary with 'she's gorgeous!' which always makes us smile.  We also had been warned Addie would take a real step back developmentally before moving forward but Addie decided that was not for her so she's been pulling up and cruising around her bed for the past few days. 

She is a little grumpy at the moment and we had a long day.  She's just uncomfortable- particularly her throat is bothering her from the ventilator and when she coughs her incision hurts and her pain meds make her itch (where on earth did she get weird reactions to pain meds from? haha!) Right now if Addie could say more than glah-dah-bah-na-glah, I think she would say 'what?! this kidney transplant thing is not as fun as you made it sound! I feel yuck and miss my dad and brother and dog and hate being in the hospital!'  Of course she just doesn't know that a week from now she's going to be feeling so much better and that her life has changed so much for the better.  Right now she's just a baby who isn't sure what all is happening and why she feels bad so please pray that she starts to feel comfortable and happy super soon! 

She should get her dialysis catheter removed early this week (maybe even tomorrow?) and we expect she'll actually be discharged from the hospital within a week.  We will be staying in CA in an apartment for another 6weeks to 2 months until her bladder is stronger and they can remove the surgically placed catheter she is currently reliant on.  And until all her immuno suppressant levels are stable and it's safe for her to head on an airplane. 

But in summary, God is so good and this transplant has been a tremendous blessing.  We are thanking him for leading us to Dr C and Stanford hospital, for preparing my kidney for Addie and for taking such amazing care of our precious baby all week long.  God works in wonderful, miraculous ways and we have seen how he uses medicine, super smart doctors and and amazing technology to heal his children.  And to top it all off, he used me in the most precious way.  Being Addie's kidney donor has been the best experience of my life. I am forever grateful I got to do this for her.

We love all of you so much and could not have made it through the week without the love and support we have recieved.  Please keep praying for amazing Addie and of course for marvelous little Max.  We cannot wait for him to get his daddy's kidney and we pray every day for God's hand on Max as he waits.  Thank you for loving us and sharing in our precious babies' remarkable journey. 

And Addie's prayer walls... (better clearer pictures to come!)... thank you to everyone who contributed, we couldn't fit it on one wall, it's Addie's amazing testimony...

Addie's Big Day is Finally Here! Please Read, Pray, Hope and Share

Well it's Monday night and tomorrow morning is Addie's big transplant day.  It is a day we have been waiting for, praying for, hoping for and preparing for and it is finally here!  We are nervous, scared, anxious, excited, and basically just full of energy and emotions. 

I will go to anaesthesia at 830am tomorrow in preparation for my now 1030 surgery.  That will put Addie's surgery at about 130pm (330pm houston time).  We expect her surgery to last for around 5 hours.  It will be a very long day for all of us so please please keep each of us in your prayers. 

For tomorrow we are praying for no surgery or aneathesia complications for Addie and me and that my kidney will immediately start making urine for Addie.  I will update as soon as I'm coherent enough to at least put together a Facebook post!

Please share this link on facebook or just our names and lift us up in prayer tomorrow.  It is such an encouragement to get online and see that people are praying for us. We have our phones always nearby and appreciate the texts and emails and continued photos coming in!  Thank you to everyone who is encouraging us and supporting us during this incredibly scary and exciting and important time in our lives!

All About California and Addie's HUGE Day Coming Up

I can't believe it's been almost 5 weeks since I posted!  I would love to say it is because life has been gloriously uneventful and I've just had nothing to say... but in the past five weeks we did manage a surgery for Addie, a lot of potassium drama with Addie and an unexpected PICU admission for Max! We've had alot of boring medical stuff happening and the posts I've started full of details about catheter placements or Potassium clearance were so boring I couldn't even finish!  But for all the minor things I will say we have two healthy and happy babies right now and are in a good place to be approaching this huge day in our life!

Last week Addie, my mom and I went to California to meet our team of surgeons and doctors who will be doing our surgeries.   We had only spoken on the phone with the transplant coordinator but had never seen a doctor.  We weren't sure how much testing they would want us to do and if they would have any concerns about the surgery or not.  If you've been following our story for a while then you may remember that in late December we really thought we were going to get to transplant in January and then Addie's doctor came back and the team met and they cancelled any transplant any time soon so although I have had a peace about our May 8 surgery date, I was still nervous about it actually coming to fruition and whether the doctors would end of finding a problem or reason to delay. 

So the main good news from our trip is that there were no problems, no concerns and we have our official approval from all components of her transplant team for surgery a week from Tuesday! They actually repeated very little testing, aside from some blood work.  They wanted to see me and Addie and talk A LOT about her medical history but they didn't have us redo any of the reasonably invasive and time consuming testing that Addie and I went through in December.  Of course all the doctors fell in love with this little girl- I mean how could they not?!

Addie was pretty amazing on the plane.  We had strangers come up and tell us she was the best baby they'd ever seen on a plane.  There were no tears, no screaming and a lot of sleeping! We also loved the area and found we were done every day in the early afternoon and spent time shopping and eating out and actually turned it into a little vacation! It was really nice to see Addie get to have fun and enjoy a little girls week before her big surgery!

We learned a lot more about the surgery itself and the days that will follow so I thought I'd share a bit more so people know what all will be going on and so that you know how to be praying for us, because it was certainly clear we are going to need a lot of prayer!

So... a week from today we leave and arrive in California on Sunday evening.  On Monday May 7, Addie will first recieve her last hemo treatment there and then be admitted.  They will do some last minute pre op testing and start her on IV fluids.  Thankfully I do not have to be admitted the night before and will get to spend Addie's last night before surgery with her.  Then on Tuesday morning, I will head to be admitted very early in the morning.  They will take us both to the OR faily early (although we did learn that California early and Texas early mean different things and early seems to be 9am there instead of 7am here which we were quite excited about!) He is hoping to be removing my kidney around 930am CA time which is 1130am Houston time.  The same surgeon is actually doing both of our surgeries which is different to how they do it here.  But Dr C the surgeon really believes in being involved in every step and believes it contributes to his amazing 100% success rate so we are happy for him to be doing mine as well.

Unless you have been through surgery or are a really enthusiastic medical TV fan, you may not know a lot about the difference in open vs laprascopic surgeries but in a laproscopic surgery they make smaller incisions and then stick a camera inside of you and small tools and they can avoid actually opening you up to see what they are doing.  Both of Addison and Max's kidney removals were done this way and we had assumed mine would be as that is how they would have done it in Texas.  However, Dr C does not believe that laprascopic surgeries on the donor are in the best interest of the recipient, at least not a little recipient like Addie.  He believes if he opens me up and then is able to go in with his hands and find the kidney and remove it that way, he can assure us a better outcome for Addie.  She will make urine faster and have lower risk of losing my kidney.  All of which sounds super important so we are really grateful for a surgeon that has such a conservative plan and has Addie's interests at the absolute forefront. 

The drawback is that it will be a much bigger surgery for me- a significantly bigger incision and more pain with a longer recovery.  I would of course do anything for Addie and I'm going to be in California all summer for Addie's recovery so it's really not a problem at all.  But as much I want everyone's primary focus in praying to be Addie, I would appreciate some prayers for me on the 8th and the days that follow for minimal pain and no complications as it appears what I thought was a fairly minor surgery for me is actually not so minor!

So I'll be in the operating room and Dr C will be well on his way by 930 and he estimates my surgery will take around 3 hours.  They had told me 4 at one point but Dr C was very excited that I was 'fit' (to be clear, I am not fit and pretty much get winded walking up the stairs but I am thin which seems to offer the illusion of fitness!) and he thinks that should make my surgery a bit faster. While he is operating on me, anaesthesia will have put Addie to sleep and will already be flushing her body with fluids so that hopefully once my kidney is inside of her, it will start making lots of urine.  Once Dr C has my kidney, he will personally walk it across the walkway to Addie.  Presumably someone will close me up, I didn't really ask about that but am taking it in good faith they will not just leave me there!  I'll wake up right around when he gets started on Addie.  Honestly I really wish I could just stay under through her surgery as well and just wake up and it all be done but don't think asking for some optional aneasthesia would go over well so I will wake up and start worrying about Addie.

Addie's surgery will take more like 5 hours once Dr C gets there.  When he is done, they will take her out of heavy aneasthesia but they will leave her sedated and on the ventilator for probably 4 DAYS!  They will be giving Addie a ton of fluids to keep my kidney from having too much culture shock suddenly being in a baby and they don't want to risk the excess fluid compromising her heart or lungs and her running into respiratory distress so they will preventatively leave her intubated for those first few days.  I hope most of you have never had to see you child on a ventilator because it breaks your heart.  I really hate it and I know it's good for her but it's very sad for me. It also brings back a lot of memories from when she was sick with her heart failure in July and on the vent for 4 days then so it's tough on me emotionally.  So please be praying for all of us.  Obviously the 8th is the biggest day but it will be a very trying week on all of us physically and emotionally so we would love to be covered in prayer those days.

While Addie is in the ICU the first week and I am still admitted recovering, my mom will be staying with Addie and will have been signed off as her gaurdian for that time.  My Aunt Debra, my dad's sister is coming out for that week and will be staying with me and taking care of me.  Meanwhile my dad is there to take care of my mom and me and Addie (and he thought retirement was going to mean less stress... hahaha!) And we pretty much have someone coming out to stay with us every week from then on so we will be very supported and loved!

I feel the full range of emotions about everything that is coming up.  I am not terrified because I wouldn't be doing this if I was terrified.  I am nervous and scared but I believe we are doing the best thing for Addie and that she will be okay.  After Addie had a bunch of issues with her potassium clearance on Hemo, I was saying to one of my best friends that I was worried because Addie always has these strange and serious complications and what if she has a complication with transplant. She certainly has had her share on dialysis.  And my friend Shannon pointed out that while yes Addie has had some serious complications she has come through all of them amazingly well and that she is looking the healthiest and happiest she ever has.  And she pointed out that Addie may very well have a complication but that if she does we just have to remember how strong she is and that she'll pull through it and come out the other side better than ever.  And that has really encouraged me to look at Addie's story differently.  Addie's road hasn't been easy but God has protected her and been there with her even at the scary moments and so I trust that no matter what the coming weeks have in store that God will hold her close to him and see her through.  I see her past complications not as a sign of how many things have gone wrong but of just how strong she is and how much she has survived. I know God has amazing plans for her and that this next month is just the beginning of an exciting new chapter for her.
So we pray for no complications and a smooth road for Addie but we know that God will be with her no matter what and that she'll amaze us all once again!  Knowing all that, I think the most prevalent emotions I feel are not so much fear as just dread but also excitement.  I dread Addie being on a ventilator and having new incisions and new lines and not feeling well.  She's had the best last month and so I hate for her to have to go through this, even though I know it is for her huge ultimate gain.  I dread being away from Al and Max and my best friends.  I dread being in pain and dealing with my own recovery at a time when all I want is to be there for Addie.  It is hard to psych yourself up for what you know is going to be the hardest couple of weeks of your life.  But while the dread and worry are there, there is great excitement that this is finally happening. 

We have known since Addie was 3 weeks old that this would need to happen and God has reassured me in all of her scary moments that she will get a kidney and she will get better.  Transplant has been my hope on many long difficult days.  It has been my promise and my dream for Addie.  And it's here.  Addie is getting the gift of life and I get to give it to her.  So far above anything else I am praising God for keeping Addie safe the past 16 months, for creating in me a kidney that I do not doubt was for Addie all along, and for orchestrating every detail of this transplant.

We are also thankful for the tremendous support we have recieved from everyone- from my co workers who donated so much paid leave to me that I won't have missed a single day's pay all year by the end of this, to our pastor and church family who prayed over Addie, to my friends who have genuinely cared about every boring dialysis detail and to the hundreds of people who have sent prayer posters for Addie.  (and if you haven't sent one and want to, please keep sending them this week to steph.graham@hotmail.com or 936 689 7238- they really are a huge blessing!)  I will be updating my blog around surgery time but I am much better at updating Facebook so if you aren't FB friends with me and following this and are on Facebook, request me and then you can follow my much more timely updates!  I'll probably put up a quick blog and Facebook post on surgery day just with a picture and pray for Addie today that people can share on the day.

And to reward anyone who actually made it through this monster email, Addie and I had a pre-transplant photo session together (meant to be a family session but sweet Max was in the ICU... so it was just me and Addie but that's ok, it was a special thing to be able to do before our joint surgery!) Here's a few highlights:

Requesting Prayer Pictures for Addie's May 8 transplant!

6 weeks from today Addison will be going through the biggest surgery of her life. 6 weeks from today, my baby and I will both be in adjoining operating rooms involved in a double surgery that all up will probably take close to 10 hours. 6 weeks from today my mom and dad will sit in an unfamiliar waiting room in California with their daughter and granddaughter in surgery while my husband sits at home in Texas with our baby boy waiting to hear his wife and daughter are through surgery. 6 weeks from today we will be at Stanford University because the surgery is so complicated and so scary that no hospitals in Texas feel prepared to do it. Most importantly though, 6 weeks from today Addison will be given more than my kidney- she will be given a future and a life free from daily hospital trips. I don't think I've ever felt the strong combination of dread, excitement, fear and hope all for one day quite like I do when I think about May 8.



Addison is the most delightful baby. We walk into a store and she starts waving and smiling at everyone she sees. She gives hugs and kisses and breaks into the biggest toothiest smile when she sees someone she loves. She is stubborn and smart and creative and funny. She rips her glasses and hearing aids off her face with a vengeance, she pulls her brothers socks off and tries to bite his toes, she knows who she can get away with things with and plays everyone. She is equal parts adorableness and pure trouble. Basically she is a typical one year old. Only her life has been anything but typical. Addie spent the first 8 months of her life in the NICU. She was diagnosed with Congenital Nephrotic Syndrome when she was 3 weeks old and developed a life threatening Strep B infection that week that earned her and her brother an ambulance trip to the big hospital in the city. At 6 months old, her kidneys had both been removed and she started dialysis. One week into dialysis, Addie ended up in congestive heart failure from fluid overload and gave her family the biggest scare of their lives. After 3 blissful months home on peritoneal dialysis, Addie ended up in the PICU with dialysis fluid in her chest. Three weeks in the hospital later, Addie comes home on Hemodialysis, something we had hoped to avoid. 2 months on Hemo and all is well until a simple g-tube surgery causes Addie to become very hypertensive. 4 days in the ICU, a week in the hospital and Addie came home on 4 blood pressure meds around the clock.

Addie is awesome at so many things. I mean I know I'm biased but I think she is brilliant and totally rocks at stacking cups and her helicopter toy. She does not, however, rock at dialysis. She manages to find complications the doctors did not even know existed. For that reason and because of what a difficult few months of dialysis she has had, we strongly believe this transplant is the absolute best thing for Addie. We prayed fervently before making the decision to take Addie to California to get this surgery. We all believe wholeheartedly that God is calling us to do this for Addie. My mom says God calls us to radical faith and heading off to San Francisco for the summer for a surgery with plenty of risks is definitely radical. It's scary, it's huge and it's not going to be easy for any of us. But we know it's where we are meant to be.

So on May 6, my mom, my dad and Addie and I will leave for her May 8 transplant (we are going in a few weeks for a 3 day pre-op trip also). Al's parents will arrive here and stay with him and Max. We have not yet decided if Max and Al will join us at some point in California. It depends on a lot of factors and it is just too soon after Max coming home from the hospital to tell if he is up for that or not.

One week after I found out about their kidney condition I asked my OB to look up my blood type and found out I was a match. I knew that day my kidney wasn't mine anymore, that I was just housing it until one of them was ready. The way I see it, she stole my heart, inhabited and forever changed my body- she may as well take my kidney as well. It's no less hers than the rest of me. The fact that I'm a match and can give it to her is the second greatest privilege of my life after having carried them for 7 months. I am nothing but thrilled to be giving it to her.



I have decided that over the next 6 weeks while we prepare for this huge day, I want to do something for Addie, for now but even more, for her in the future. I know there are hundreds of people praying for her and I want to ask ALL of you who are praying or sending Addie love and well wishes for a HUGE favor- I want to make a photo wall and photo book of prayers for Addie for May 8. My dream is to cover Addie's hospital room walls with photos of people and their prayers so that every person who walks in Addie's hospital room will be blown away by the love and prayer being sent for this little girl. My prayer is that her room would be covered in prayer, literally. That when my mom sits in Addie's room after surgery while I'm off in my separate room recovering for a couple of days that she will feel surrounded my the faces of those praying for Addie. And that as Addie grows up, she can look back and see just how loved she is and how covered in prayer she was on that monumental day in her life. So here is my plea- I want a photo of each person praying for Addie holding a whiteboard, poster or piece of paper with a prayer, a hope, a wish, a memory, a Bible verse, or simply an ‘I love you’ or ‘I’m thinking of you’ for Addie on it. I am wanting you to send just the photo of the message, not the actual poster! My friends have so generously agreed to model for you (with names and messages made by me of course!)...









What I'm hoping is that all of you who are reading will send me your picture and ALSO pass this request to every person you have ever told about Max and Addie and ask them for a photo as well. I would love to get photos from people all over the world who we may not have seen in years and who we may have never even met or heard of. I get told often by people 'my parents/friends/co-workers are praying for your babies too' so if you have people who ask you about the babies, please grab them a sheet of paper and grab your camera/phone and send me their pic too! If you don't mind linking things, I'd LOVE for you to link this to your Facebook page and ask your facebook world to join us in praying for Addie and ask them to send me a picture and a prayer for Addie for her big day. Feel free to print this and share it at work or with neighbors. We would love to have hundreds of people thinking about Addie and praying for her in 6 weeks.

Here is the thing- the most important thing is just to know that people are praying so it doesn't have to be a fancy poster. I made a whiteboard for her that I'll carry with me so you can write her a message on that if you see me. But, seriously a sheet of white paper with a quick note on it is fantastic. I have perfectionist tendencies and could totally see myself deciding I needed to make the world's most beautiful poster and then keep putting it off because I didn't have 3 shades of pink glitter and then spend hours trying to make my note rhyme, only to end up not getting it done because I never had many hours to do it perfectly! So please know we just want to know you're praying and so simple messages are awesome!

So grab a whiteboard for you and your family and friends, or decorate a poster or jot something on paper and have someone snap a picture of you. Then ask your family and friends to do the same! Group photos are good but we'd prefer individual ones just for the effect of covering Addie's walls in photos that I'm going for. If you have an adorable baby or child, feel free to write a note for them and send me their picture too! One request is that I would love you to include: your name, where you live and how you know Addie (or know about us). We'd love to hear from people who are friends of acquaintances or people who stumbled upon this blog! When we realize how many people we don’t even know there are praying for us, it blesses us so much so this is not a favor for just our friends but for everyone!

As we get closer, I'll share some really specific prayer requests for May 8 and the days that follow. Our main general requests are for no complications in surgery, that she will quickly come off the ventilator, that her blood pressure will be stable, that my kidney will very quickly start making urine for Addie and most importantly that her body will NOT reject or damage the new kidney. And of course all the usual things just that Addie will be strong and happy and experience minimal pain, fear or confusion during this time.

So snap away with a camara or phone and then email them to me at steph.graham@hotmail.com or text your photo directly from your phone to me at 936 689 7238. Start sending pictures right away and I'll start printing them and making her keepsake book and spread the word for people to be praying for sweet Addie leading up to, on and after May 8. (Oh and if you do not want your photo here or on Facebook, just let me know because I will probably post some!)

New Hope for Max

I believe that you can endure a large amount of stress, sadness and disappointment as long as you have a strong hope for the future. A belief that things will get better and that what lies ahead is going to be filled with joy and happiness sustains you when the current day is serving up its fair share of difficulties. And while hope is something that we will never lose and that our faith helps us sustain against the odds, there have been many times when the doctors have given us very little to hope for. The past month has been difficult as we had Max in the hospital all month, Addie's unexpected ICU stay and lingering blood pressure issues and the news that Max's brain had deteriorated. While we definitely did not lose our hope, there were days when it seemed somewhat distant and unfulfilling. With that in mind, it is a great joy to write this post and tell you about all the hope we have been given in the last week for our precious Max. (We also have a confirmed transplant date and lots of hope for Addie but I'll write another post on our transplant plans soon!).

After almost 4 weeks on Hemo, we transitioned Max back to his peritoneal dialysis so he could go back on his home machine. Max was never able to go home on Hemo for some complicated logistical reasons but he actually did really well on it. It was so encourgaing to see him handle both surgery and Hemo so well given it is a stressful procedure and we had been extensively warned of all the things that could go wrong. Max actually had the best month in terms of lack of blue episodes, interactions and general happiness that he has had in months. Not having reflux and a painful hernia have made him a very happy baby and made us very happy parents. And on Monday he was able to come home and so far has settled back in to home life and his machine very smoothly.

While in the hospital Max had a ridiculous number of tests run in hopes of understanding more about what is going on with Max neurologically. It's been this crazy emotional rollercoaster because 6 weeks ago the doctors told us they thought he likely had a progressive genetic condition that would cause both mental and physical deterioration and a reduced life expectancy. Then they got all these genetic tests back and decided he probably did not have a genetic condition which was good news. Then we got the MRI that showed his brain was smaller which was very bad news and made us think it was progressive again. Then they said it might stop shrinking, then they challenged whether that diagnosis even matched. We needed to have a proper meeting with neurology and nephrology (brain and kidney) to put all the pieces together with what we know and work out what it all means. After the last few difficult meetings, I was thoroughly dreading the meeting.

However, the meeting was actually much better than we had expected. An unexpected blessing came from Max's 4 weeks in the hospital. It gave his kidney Dr S a chance to really bond with Max and observe him more and she came to the meeting with much more hope and determination to help Max. It changed the whole tone of meeting to have her advocating for him and believing in what he may be able to do and clearly expressing to our neurologist that Max does have a quality of life (something we obviously knew but to have a doctor say it to the other doctor made a huge difference). We left the meeting confident that Dr S would fight for Max and for us and to ensure we make all the right choices for him. Most excitedly it means that Dr S thinks we should plan to transplant Max at some point. Although that had, of course, always been our plan, the meetings we have had these past two months had started to make that seem not possible and we were very discouraged that Max may not get to transplant. We will be waiting at least another year and probably longer because transplant does pose a lot of risks to Max but at this point, it is our plan to give Max Al's kidney and we have a doctor who plans to support us in that.

The other significant thing that came from the meeting is that the neurologist does not believe Max's brain cells are not actually dying but rather not growing or developing. This gives the appearance that Max's brain is shrinking since his head and some parts of his brain are continuing to grow. But in reality he does not actually have less brain matter, he just doesn't have more when he should. And while the fact that his brain is not growing is not good news, it is better than his brain actually shrinking. Especially because while the neurologist does not necessarily think Max will gain a lot of skills, he also does not expect Max to lose the skills he has. Which means Max will continue to recognize us, smile his infectious huge smile, coo and express himself and enjoy music and toys. And for us that is huge. And it fills us for hope that Max's life will be filled with happiness and a love for us and an awareness that he is fiercely loved by us. And while I will admit that hearing the doctors predict that Max is likely to never walk or talk was very sad, we believe that his capacity for love and joy is the most important thing so we rejoice that God has given these gifts to Max in abundance.

The neurologist also admitted he's been wrong before and that innovative therapies can make a big difference with kids like Max. Max loves music therapy and occupational therapy and we are going to keep getting him lots of therapy and keep training his brain to find new pathways and new ways of doing things. So we walked away from yesterday with a lot of Hope- hope for a kidney for Max and freedom from his machine in time, hope that he will continue to know, love and interact with us and hope that with a lot of therapy he may develop more skills. He will always be medically fragile and there always be lots of reasons to worry about Max but we are choosing to live by hope for him and we feel blessed that his doctor S shares hope for him and that we are fighting for the very best quality of life for him!

Thank you so much to everyone who has been praying for Max, coming to see Max, sharing in our sadness and joys over the past couple of months. We have felt very supported and we know that Max is loved by many many people including many who have not even met him! We know that there will be highs and lows and scary times in our journey with little man Max and we are grateful that we have our families and friends who are walking alongside us every step of the way.

Max's Brain

I have been really glad I started this blog. It has been such a great way to deliver news to people and also to feel supported by so many people. There are still posts, though, that I don't like to write. It's definitely easier to share hard information in one place than go through it with everyone individually so I'm glad I have a blog for news both good and bad. But I still find it hard to actually sit down and type out bad news. So forgive me for my delay in telling you about Max's MRI results. We got the results back from Max's MRI on Thursday and his brain is 'worse' than it was 6 weeks ago. It seems as though his brain is 'shrinking' or that the cells in his brain are progressively dying off. They expect this will continue to happen at least for a while still. At some point (maybe 2 years old?) it may/should stop. And what damage it does to Max between now and then we just don't know.

Why did this happen? Well we don't know for sure but I can tell you one of neurologists opinions:

When Max was 3 days old he had a pulmonary hemmorage or lung bleed. It was on Christmas Day. It was the same day Addison started breathing completely on her own without any oxygen or support. It was the first day I ever held either of my babies. It was the day I was discharged from the hospital. We went to my parents' house and opened presents and ate dinner that evening. Then we headed into the hospital to see the itty bitty not even 4lb babies. When we got there and went back, Max was in distress. He wasn't breathing correctly and had a horrible painful look on his face and blood was coming up his breathing tube. It was, up until that point, the most terrifying thing I had ever seen. I remember feeling that day that I understood the intensity of the love of motherhood in the joy I felt holding Addie in my arms and the terror I felt watching Max struggle.

The nurse practioner talked to us and I cried a lot and they got Max stable seemingly pretty quickly. No one explained things in the level of detail then and there that they would later to us so I don't know all the details of what ventilator settings changed etc. I just know he stabilized and I felt better. I also know they did a head ultrasound and didn't see any bleeds the next day and that was good news. And that they told us Max was in 'time out' for the next couple of days requiring a lot of oxygen and sedation and not being able to handle any holding or handling. Then Max got better and we got to hold him on New Year's Eve and then began all the mystery of Max like his low breathing rate and tight muscle tone and then that led to all the testing which accidently uncovered their kidney disorder and I suppose the rest is history...

And so I moved on from that Christmas Day experience. So many seemingly bigger or more chronic things came up and it stopped being the most traumatic thing I'd seen after all the times I've witnessed my babies stop breathing or end up on ventilators now. In fact if someone were to ask me about their medical history, I wouldn't even mention the lung bleed because I didn't think it was that significant.

Turns out it might have been very significant because that lung bleed might have been the moment that Max's brain started shrinking.

We don't know that for sure and most likely we will never know for sure. One neurologist seemed reasonably confident that oxygen deprivation during that lung bleed when he was so premature and fragile was what caused the start of progressive brain atrophy or cell death. Any time the brain is deprived of oxygen for any significant amount of time, damage is down. depending on how long the brain is deprived and the age of the person and the reason for the damage, the deprivation can cause a small and localised or specific area of damage to the brain. Other times it can cause a 'global' damage meaning the whole brain is impacted. This is what we've seen in Max and is obviously a harder situation to predict the true effect of. Sometimes the damage will happen briskly and all at once and you can immediately see what has happened. Other times a few cells die at the time but it sets off a domino effect whereby more and more cells will die from that point onwards. How fast they die and for how long they continue dying, well it depends on the person so it's impossible to know. It seems that Max's brain experienced global and gradual, progressive cell death.

However, our other main neurologist seems less accepting of this view that the shrinking is caused by the oxygen deprivation from the lung bleed and is still looking for a more genetic explanation. And so we've been running a ridiculous number of tests on Max. In one day, he had a skeletal or bone survey, an opthamological workup, blood cultures and the start of his 23 hour EEG, all in between Hemo of course! So far we haven't found anything leading us towards a genetic or alternative diagnosis. So unless we can find an alternative diagnosis, I think we will end up with cerebral atrophy due to neonatal anoxic brain injury (or brain cell death following a period of no oxygen to the brain as a little baby).

What all the doctors do agree on though is that every one of his MRIs shows a smaller brain volume than the MRI before. And of all the body parts you could have shrink, the brain might be the worst one. Having said that, the brain is a very complicated organ and it also is a heavily localized organ whereby certain parts of the brain have been allocated for certain functions. And interestingly almost all of your 'survival' functions have been stored in an area called the brainstem at the bottom of the brain. On top of the brainstem is the cerebrum which is responsible for actually Living now that your brainstem kept you Alive. And within the cerebrum there are four lobes which each have their own roles. This is a very simplified explanation BUT at the back of the brain you have the occipital lobe for vision. On the sides you have the Parietal Lobe for sensation and the Temporal Lobe for memory and emotion and at the front of the brain where your forehead is you have your Frontal Lobe for movement and problem solving. At the moment we see no indication that Max's brainstem is affected. I say that with no real confidence because the neurologist did ponder aloud with us whether it looked a bit thin but I don't think we think his brainstem is shrinking. Which for Max's survival is really very important. The atrophy seems to be in his cerebrum and most pronounced in his frontal lobe. Which would definitely explain his inability to produce much voluntary movement.

So in terms of what the future holds for Max, it is hard to know because we don't know how much his brain will suffer in the next year or so (there is research to suggest progressive atrophy will slow down or stop after approximately two years after the injury). We don't have any reason to think it is an immediately life threatening situation. There are certain skills however that were he to lose, it could lead to a worse prognosis, such as losing his ability to swallow secretions. We expect Max to have lingering serious disabilities but again, we don't know at this point what that will look like. We know that although his MRI was worse within 6 weeks (which is in itself a bad sign to see visible damage in a relatively short amount of time), BUT we did not see any obvious differences in his behavior in the past 6 weeks. So the correlation between what is going on in his brain and how it will affect Max's outward behavior is far from clear.

Needless to say, we are greatly saddened by this news. We were very much hoping to hear that Max's brain was stable between the two MRIs and we feel very troubled by the idea of his brain shrinking instead of growing. I don't think there are any words that could properly express how we feel. I don't really think it has truly 'sunk in' and while there are moments where it feels real and acutely painful, no doubt the denial and uncertainty are protecting us to some extent.

In terms of what we actually DO now, well, not terribly much in that there is no real treatment for this. Which is hard for us. I feel like surely there should be some brain dialysis we could be getting or a brain transplant we could be working towards. We are so used to dealing with their kidney issues that involve so many treatments that the idea of there not being treatment with this is difficult. After these rounds of tests are done, life will just go back to normal and neurology probably won't see Max very often. (Max will be in the hospital for a couple more weeks but that is for inpatient Hemo treatments and not because of this neurological diagnosis.) But, we keep getting him therapy and just keep trying to teach his muscles how to move. Max is social and interacts with us. He tracks things visually. He, for the main part, is very medically stable despite complicated kidney issues. He is incredibly sweet, loves to be held and smiles so big his whole mouth opens. He is adorable and loved and there are many wonderful strengths of Max's we will be building up and working with. Although he is not currently able to produce a lot of movement, the body can be trained and we'll keep working on head control and reaching. We are also ordering a 'Kid Cart' for him on Monday which is like a 'medical stroller' or really, a baby wheelchair. I remember not too long ago when we started questioning what was going on with Max feeling incredibly daunted by the idea of wheelchairs and all those things. But it'll be really good for Max and we feel happier than we thought we would with this step for him.

The most important thing to pray for Max is that God will protect his brain and keep his hand over the parts that are most important for Max. We are doing this EEG brainwave study to test for seizures. We have not seen any indication of them but absence seizures can actually go undetected. We don't expect they'll find any now but we would ask you to pray every day that God will protect Max's brain from developing seizures. Another concern is with his swallowing. Max has never had a strong swallow and when he bottle fed we had to thicken his feed. He now has tube feeds and his new procedure to eliminate vomiting. His swallow may not be strong but it is definitely still working now. We are praying that God protects his swallow so that he doesn't end up in any trouble with choking on secretions etc. We are praying for protection over his brainstem so that basic body functions are not compromised. Furthermore, we are praying that God would put his hand over Max's sweet smile and his ability to recognize us and interact with us. I won't say that it doesn't matter whether Max can walk or talk because it does, of course. But the most important thing for Al and I is that he is happy.

Of course those are the specifics but we will also continue to pray for medically unexplained healing. We are praying that if Max's brain does continue to shrink that God will protect what is most important to Max. But we are also praying above and beyond what the doctors have predicted. We are praying that God will stop the brain cells from dying now and that Max's brain will start to regenerate and heal. We are not sure how God will work in Max's brain but we know He CAN heal Max in big or small ways so we'll just keep praying for both.

Please pray for us as we process this and deal with it practically but more so emotionally. If you're reading this blog you already know we have had a difficult year and we have a lot on our hands and it is difficult to fathom dealing with a whole new set of issues. But we know God is faithful and we know we can get through things we never would have thought possible. Al's mom is coming out tonight and we are excited to have her here. We are grateful for friends and family and support. We are very grateful for love poured out on us during this very difficult time and even more for love poured out on Max, and Addison of course. We understand people often do not know what to say but we do love to hear from people and see people. Feeling lonely certainly does not help so keep texting us, emailing us and talking to us and loving us. It makes times like this manageable when you have people walking alongside of you.

Thanks so much for all the prayers and please keep praying for us all. And for those of you who see us regularly and know Max, please keep believing in Max, giving him cuddles and soaking up his adorableness. Al and I are actively choosing not to let his MRIs define who he is to us. Max is still the most adorable boy in the world who lights up our lives. Nothing has changed that and nothing ever will.

When it rains, It POURS!

We knew these couple of weeks wouldn't be easy. We knew Max would be having surgery for a couple of weeks before and we had prepared for that to be a big deal and we knew Addie would have surgery not too long after so we anticipated a climatic end to February. We did not, however, anticipate quite the level of drama that we have encountered. My Facebook updates were getting quite lengthy so I thought I'd do better now just updating properly on my blog...

Max had no issues with his surgery at all and we had been really prepared for him to. We had the whole Max is sensitive and anything can send him into trouble talk with the doctors so we very nervously sent him off to surgery 8 days ago. And we held our breath and prayed very hard and he did really well. And we kept holding our breath and praying fervently as he started Hemo 2 days later and again he did really well so by the weekend we started to relax. Max was off his pain meds and feeling better and had not had any problems with Hemo yet. The relaxing from knowing Max was doing well was dampered by the dread of taking Addie in to surgery on Monday. I felt really sad about it all Sunday because she was SO happy this weekend and it's just no fun to take a child who is feeling great in to inevitably feel worse even when you know it's the best for the long run. I wasn't hugely nervous so much as just dreading the whole post op pain part.

So Monday came and Addie had Hemo in the morning and then surgery. She came out of the OR pretty quickly and we got to go back to recovery to see her. If you get admitted straight to an ICU (NICU or PICU) you don't go to recovery but since Addie was planned to go to a normal pediatric room she went to recovery. We've only been to recovery a couple of times but it is NOT a fun place. Lots of kids coming out of surgeries- tears, nervous parents, no fun. Anyway when we got there Addie was uncomfortable and fussing and her blood pressures were high. Long story short 4 hours later and many many pain meds and blood pressure meds later Addie was smiling and playing and yet still extremely hypertensive. It's just easier to just talk about the systolic number, the first number. Addie's should be between about 95-115 and generally runs about 105-125 so a little high but ok. The doctors wouldn't consider it grounds for needing to come in until it was consistently above 135. A BP above 150 is way too high and above 170 is acutely dangerous because little hearts cannot sustain such high pressures. I remember when I was pregnant with twins, I had to get blood pressures checks daily because my pressures were creeping up into the 140s. So the fact that Addie's BP ran in the 170-180s for 16 hours straight is very scary. They tried every machine and every cuff hoping like crazy it was some sort of error.

We tried to avoid a drip for a long time because she didn't have IV access because it is really hard to get an IV on Addie. We tried every single blood pressure medicine, either orally or through her Hemo catheter and nothing seemed to work. Finally at 2am it was clear she had to get a drip so we then spent 2 hours getting an IV in which was a very traumatic experience for both Addie and I! They ended up having to get a scalp IV in and had to shave part of her hair. And it has taken Addie a really long time to grow her sweet little blonde fuzz so I was very sad about that. But finally after about 7 sticks and over a couple of hours, Addie started on her drip. I was so stressed by this point because nothing had worked yet and I knew we needed to get her BP down soon or her heart was going to run into trouble. I prayed very hard at 4am and asked all of you to pray and thankfully the drip worked! She required very high doses but her pressures finally came down!!

Now her pressures are being managed by the drip so she is not in any danger from such high BPs but we can't seem to get her off the drip. The intention of a drip (which administers medicine constantly around the clock) is to stabilize her and then hopefully wean off and onto oral meds. We hoped maybe having Hemo would help but it has not really yet. So please keep praying for Addie. She cannot leave the ICU until she is stable off her drip for a while. We still don't fully understand why it happened other than it seems to be a rare but possible effect from anaethesia. Why is hasn't worn off yet we're not sure. Addie often seems to run into these confusing medical dilemmas where I really feel like I need House to come and figure it all out...

But the culprit seemingly was anaethesia. Which means you can only imagine our excitement at finding out today that Max would be going back under anaesthesia tomorrow! I mean, really?! Have we not had enough anaethesia fun for one week!!! So Max is not getting surgery, he is going under general to have another MRI done. It's like my twins are competing to see which one can get more medical attention! Ultimately it is just the reality of having twins with chronic health conditions- definitely not for the faint of heart!

So Max's MRI... Max had an MRI about 6 or 7 weeks ago so you may be wondering why we're doing another one. Well, as I've mentioned before Max's MRI showed significant brain 'damage' or abnormality. However, we haven't been able to get a diagnosis as to why. There were a lot of possibilities posed and at our meeting a few weeks ago, the doctors wanted to talk to us about their concern that Max's condition may be 'neurodegenerative' meaning he may actually keep getting worse neurologically, which could actually make it life threatening. It could also not get worse but be stagnant and he will never develop past where he is now. It could not be either of those two options and Max could get better but the doctors were definitely concerned that he was showing signs of a progressive condition. We have sent bloodwork away to a genetics lab but do not have results yet so in the meantime we're trying to look for objective ways of seeing whether Max is getting better, worse or the same.

It is a really hard issue for me as his mom because I think it's really important that I believe in Max and look for his acheivements and celebrating his improvements. So no doubt Al and I and our parents look at Max through a lens of wanting to see improvement. Max's doctors have a different, arguably more objective lens, but they also don't see him very often so the fact that they saw him on a good day in December and then a bad day in January seemed to really concern them that he was declining. And while we could just agree to disagree, Al and I feel it is important that we do try and understand if Max does have a progressive condition. We don't want to live with that fear in the back of our minds if there really is no evidence for it. And if it is the case, I suppose we should 'prepare ourselves' for that, although I'm not sure there's really such a thing. Also, we can't move forward with transplant until we do know whether his condition is progressive or not. So we do want to know. We had Max's PT from the NICU evaluate him today and she did not think he was worse. She also did not think he was better. His OT from home does think he is better, if you look at small specific accomplishments.

So in the end, since the MRI started all this, the doctors think the best thing would be to get another MRI 6 weeks later and look directly at the brain and not at our interpretations of his behaviour. We should be able to basically line up the images and at least see if there has been any significant changes. Please join us in praying that there will be no evidence of deterioration in Max's brain. He has been really really happy and cheerful and social and moving the past few days after his surgery so we are hopeful that some of the 'getting worse' that people were worried about was a reaction to pain and discomfort he had been in from his hernia and reflux. Since having his surgery, we have felt like we got our old Mr Happy Max back and that has thrilled us. We expect we will see abnormalities on his MRI still and we know from his pronounced developmental delays that there are some problems there. But we are praying expectantly that there is no evidence of brain deterioration. And we are continuing to pray for wisdom for doctors and answers from blood work so that we can arrive at some sort of diagnosis and some idea of what the future may have in store for Max. This set of issues we're facing with Max has been much harder on us than the kidney stuff so we'd also love prayer for Al and I and our families as we deal with another MRI results session and more talking with neurologists...

Of course after Addie's drama, we'd also love prayer that Max handles the anaethesia well!

So that's our thunderstorm of drama at the moment. We are all tired and have been worried and very much ready to get these babies back home and get things back to normal soon. We appreciate the prayers and support and visitors while we've been surviving these current trials. We continue to see God answer prayers in His time and according to His will. Healing may not always be as fast or complete but God is there working miracles in his sweet babies Max and Addison and we are so grateful that His hand is upon them.