June 2011

Hello All:

Life is still good here on the Livingston front.  Max is officially three which is still crazy to think about.  His labs are still good and he continues to do very well both developmentally and in growth.  He has gained a little bit of an attitude since his third birthday which means that his new favorite word is "NO!"  Mommy and daddy are NOT very excited about it.  He spends a little more time in time out these days as well.  He is testing his boundaries more and more each day and mommy seems to be loosing her patience with it a little more than daddy is, but that's a three year old for you.

June has been keeping us busy so far.  We started the month off with the birth of my best friends baby girl.  Miss Harlow made her debut late in the evening on May 31st.  She is absolutely perfect and beautiful.  It's possibly the coolest thing to see your best friend become a mommy.  To see the love in her eyes as she stares at her daughter is one of those moments that I will remember forever.  Congratulations Rick and Allie!

My immediate family took a trip to Gatlinburg this month as well.  It was so nice to be able to get away for a long weekend.  We all had a great time and can't wait to get another trip in soon.  This was our first weekend away since Max's transplant- it was long overdo.  During this trip we were able to meet up with 3 of our transplant buddies.  It was one of the coolest experiences of my life watching these four little miracles running around and playing with each other.  I had met all but one of the families before this weekend, but you would've never known that we all just met less than a year ago.  Something just felt right about being with this group of people.  You didn't have to explain anything to anyone- they just knew.  They don't judge if your child is behind the other kids his/her age- they celebrate the progress that each individual has made.  We talked about gtubes, granulation tissue, PD catheters, eating/drinking issues, therapy sessions, dialysis, medications, labs and feeding pumps and no one had to ask what the other person was talking about.  No one looked at you like you had three heads when you asked a question about something kidney and/or bladder related, because they all knew exactly what we had been through and will continue to go through for the rest of our lives.  These are our people and it felt oh so good to be able to communicate with them face to face about every day challenges without feeling like we are the "odd" ones.  I can 't wait to hang out with these wonderful families again and to see the milestones that each of our kids have made in the time that we will be apart.  Those few hours that we were together was another one of those moments that I will never forget.

On June 6, we were invited by Dr. G to join him and another transplant family at the Cincinnati Reds game to surprise Dr. Ben.  This was also one of those moments in life that we won't ever forget.  Dr. Ben is unfortunately leaving us at the end of the month to take an attending position at CHOP (Children's Hospital of Philadelphia).  As most of you know, Dr. Ben has been with Max since the beginning of his fellowship.  Max was only 6 weeks old when we met Dr. Ben.  Little did we know that on July 1, 2008 we would meet one of the doctors that would not only make a huge impact on our lives with his bedside manner and easy going personality, but we had just met someone who was going to have a huge part in saving our son's life.  Dr. Ben never made a decision about Max's care without confronting Tim or I to ask our opinion.  If we were unsure of something, Ben would be there to answer any of our questions and if he didn't know the answer he wasn't afraid to say so.  If he didn't hear from us after a couple of weeks he would call or email us just to check in and make sure everything was still going well.  He went out of his way to come to the dialysis unit every time Max was there for a treatment to make sure he was doing well and to see if we needed anything.  He came in on his day off once because something unexpected happened to Max.  Guys, these are just a handful of the things that he did for us as a fellow.  Can you imagine what kind of attending  he is going to be?  Dr. Ben is going to be one of the best attending doctors that CHOP has ever seen.  We are so devastated that we aren't going to be apart of it, but we are overjoyed that we got him for the three years of his fellowship.  As heartbreaking as it is to lose a doctor like him, we wouldn't have traded the time that we have gotten with him.  He got Max, Tim and I through the hardest 3 years of our lives.  It's impossible to repay someone for saving your son's life.  All we can do is take comfort in the fact that what Dr. Ben learned in his three years of being Max's fellow will help him in saving another child's life and that is enough to put us at peace with him leaving CCHMC.  Dr. Ben- you will never be replaced and will be missed greatly. Remember that you are always welcome to come back :)

On June 20th, Tim and I signed a contract on our new home.  We got word that our financing was approved and that we will be closing on July 29th.  We are so very excited about our new adventure in our new home!

Enjoy the rest of your June!  We will see you all again in July.

PS: For some reason I am not able to load more than one picture at a time due to computer issues.  I promise to get pictures of our Gatlinburg trip and of our night at the Red's game up as soon as my computer will allow me to do so. I just didn't want to delay the update any longer :)

Happy Burpbay Max!

May 12, 2008








 
 
 
 
 
 
                                                                     
 
 
                                                                  May 12, 2011
 
 
 
 
 
 
 
 
 
 
 
 

 
Thanks again for all that you have done for us over the past 3 years.  It's been fun :)
 
Sorry for not getting this up yesterday.  Blogger was in read only mode while they did maintenance.

All is well

What a month!  I don't feel like we have stopped since March.  All is going very well though.  Max's labs are beautiful (knock on wood) and he has graduated from every 3 week clinic visits to every 4 weeks. 


Max will be celebrating his third birthday this Thursday.  With his third birthday fast approaching, lots of changes are being made.  He will be graduating from the First Steps program on Tuesday which means no more therapy.  He is slowly making progress with eating orally, so everyone is in agreement to let him have a break from therapy and see how he does over the summer.  At this point, the ball is in Max's court.  He has all of the skills he needs to take all feeds by mouth, its just a matter of when Max decides that he wants to do it.  His biggest issue right now is that he is afraid to chew anything thicker than a mash potato consistency.  His favorite food at this point is a fine chunky pureed mac-n-cheese.  Like I said, he is making progress and its just a matter of time.

Our other big piece of news is that Max has officially been enrolled into a preschool program.  He will start school this August.  I am still not quite sure how I feel about this, but I know that Max needs this and that he is going to love it.  I just have to learn and accept that he is growing up and that I need to give up a little of my control over his care.  Everyone seems to be well aware of my concerns with germs and illnesses and they are going to work with us when it comes to flu season and other illnesses that will be floating around the classroom. Sigh.  He can't be three already :(

We have been very busy this month finalizing our house plans.  We are getting very close to signing a contract with All American Homes and we should break ground sometime in June.  *Fingers crossed*

 We are also very excited to announce that Max will have a little sister this fall. We have had two ultrasounds and everything looks great thus far. Our fluid levels are perfect and her heart, brain and bladder look good. Her kidneys were undetectable on the ultrasound which is good- this means that they are not engorged with fluid like Max's were :)  We will be having a level 2 ultrasound with a perinatalogist on May 25th.  This will be a full anatomy scan and will give us a much better idea on how she is doing.  We are still nervous, but are confident that everything is going to be just fine.  We are truly blessed and can't wait to meet her!

Life is good. 

I think our new posting routine is going to be monthly.  If something comes up I will definitely post to keep all of you updated, but things are going very well and we are very busy with the new house, new baby and a very busy little boy.  I will definitely be posting on Thursday to talk about our big three year old :)

Have a great week everyone!

Funeral Arrangements

The layout will be Thursday evening from 4-8pm at Muehlenkamp-Erschell Funeral Home in Ft. Thomas (across from St. Thomas Church).

The mass is at 10:30am at St. Mary's in Alexandria followed by the burial at St. Stephen Cemetary in Ft. Thomas.


Thanks again for all of your thoughts and prayers.

Rest in Peace

A little after 11:00 this morning, Heaven gained an angel. 

Rest in Peace "Pawpaw" Larry.

We love you and will miss you greatly. 

*****

I will post funeral arrangements after the meeting with the funeral home tomorrow morning.

Thank you to all that prayed for his peace and comfort. 

Updates and Prayers

Hello to all of you who are still checking in on us.  I sincerely apologize for the very long delay in updating the blog.  We have had a very busy and craptastic last few weeks.  We ended February with a move back into my parents house after we sold our house.  That went smoothly, but moving while pregnant and with a toddler are both exhausting. 

Max's labs have also sent us on a lovely roller coaster ride.  We believe they are up and down due to dehydration.  We are pumping him full of fluids but also trying to allow him to feel hungry so that he will start eating for us.  There is a very fine line between the two and its difficult to try and keep both his kidney happy and his feeling of hunger in tact.  I am beyond frustrated with the whole process.  I just want my kid to eat.  His problem is that he is stubborn.  He doesn't want to sit down long enough to eat.  He will take a few bites (on his own because he is all of a sudden Mr. Independent and doesn't want us to help) and then he fights with us because he "wans to get down an pway."  He hasn't figured out how to chew anything either so he is still on a puree.  Like I said, very frustrating to say the least.  On the bright side, he is starting to drink a little more by mouth. 

******

We are asking all of you for prayers.  We are also asking that you ask all that you know to please pray.  Some of you may remember that Tim's dad was diagnosed with a brain tumor three years ago.  This brain tumor is now winning.  Despite the couple of rounds of chemo that Larry endured 6 weeks ago, the tumor continued to grow and Larry slowly got worse.  3 weeks ago, it was decided that it was time to stop treatment and call Hospice in.  In 3 short weeks Larry has gone downhill very fast.  Tim came home this evening from visiting with his dad and said that he was no longer eating and could barely talk.  Larry hasn't gotten out of bed since Sunday afternoon. 

I will forever cherish the memories that we have with Larry.  He is a great man with a huge heart.  When Max was in the NICU, Larry was at his bedside a few times a week.  He would always tell me who was praying for Max and all of the stories he would tell the ladies at work about his only grandchild.  He is so proud to be Max's "pawpaw."  You can see his face light up, even now, when Max walks in the room and shouts "PAWPAW!"  Max is the light of his life.

Please pray for peace and comfort for both Larry and the entire Livingston family.  Goodbyes suck,  especially when it could very well be the last time you say it to someone.

The First Emails

Below are the very first emails that I sent out when we found out something was wrong with Max.  I hadn't started the blog yet, so I thought I would post the first set of updates that were sent out in those beginning days.  I didn't edit anything so excuse the typos and the lack of knowledge :)

Sent on January 30, 2008:

Hello Everyone!


I don't know if you have heard or not, but we went for an ultrasound on Monday and found out that our little boy is having some complications. His bladder and both kidneys are engorged with urine which means that he is not producing enough amniotic fluid to help develop his lungs. So, we went for another ultrasound yesterday and they diagnosed him with Posterior Urethral Valve Syndrome. All that is causing this havoc is a flap of tissue blocking the tube in his penis to allow the urine flow which is causing it to fill his bladder and back flow into his kidneys. We go tomorrow (Thursday) for a bladder tap- they will insert a needle through my belly into his bladder to drain the fluid which they will then send for a urinalysis. On Friday I will go for an ultrasound to see if his bladder is filling back up. If it is, then we move on to the next step. If it doesn't that means that his kidneys are failing and there is nothing else that they can do to help him. Tim and I are very positive that his little kidneys are still functioning. So once we see his little bladder full of pee on Friday we go for another bladder tap on Monday. This will show whether we have full kidney function or partial (you CAN survive on less than 100% kidney function). Once this is done we will go (I am assuming sometime next week) for a bladder shunt. For this procedure they will give me an epidural and insert a device the width of a pen into my belly to place the shunt into his bladder so that it will drain into his completely dry amniotic sac. Once they do this I will have to be seen ONCE A WEEK for the remainder of the pregnancy to be sure that he hasn't pulled the shunt out or that it hasn't fallen out. If this is the case we start over with replacing the shunt. Once he is born we will then have surgery to remove that stinking flap of tissue so that he can pee on his own.

His heart and brain look great from the ultrasound. The doctor said that his chest cavity is measuring about a week behind, but she isn't too worried about this because is heart is in proportion to his chest size. We are staying positive that since is heart and heartbeat look good this may mean that the kidneys are still functioning. (We don't know if this is an accurate assumption though.)

With all of that said, we need all of the prayer that we can get. Once we know for sure that his kidneys are functioning (PLEASE GOD!) then, in our opinion, we are on our way to a healthy baby boy.

Also, Tony II and my dad DO NOT want to know what we are having so if you talk to them don't mention a baby boy!

Please keep us in your prayers that all goes well and that Baby Max is a strong fighter! We will keep you updated once we find anything out.

If you could please pass this onto anyone that I may have forgotten. I don't have Lou and Nancy's or Dianne's email address handy if someone could pass this on to them.

All of our love,

Beth, Tim and Max
 
 
Sent on February 5, 2008:
 
Hello All!


We have started the week out with more tests. Friday's results came back a little better than the first set and Monday's results came back a little better as well (except for the protein levels in his urine). Today (Tuesday) I was called in for another (fourth) bladder tap to see if the protein levels got worse because of the urine sitting in his bladder all weekend. We will have those results tomorrow. As of right now, Tim and I are feeling pretty hopeful that this little man may have a chance at life. We have a fetal MRI and a fetal care evaluation set up for Monday the 11th- which to us seems like a long wait to be getting this ball rolling, but it was the soonest Children's could get us in. The MRI's results will then be combined with the results of the 4 bladder taps to determine how much damage has been done to the kidneys. We will then sit down with the urologist, the open fetal surgeon and a whole bunch of other doctors and counselors to discuss what our options are.

As of right now we do not know the condition of his kidneys or lungs. The doctor we saw today mentioned that, just from what he can tell on the ultrasound, that his kidneys will not function properly for long term use, which would mean a transplant. I don't know what "long term" means though. I will be getting a phone call tomorrow (Wednesday) with the results from today's test and hopefully some more information for what this could all mean for Max.

Please keep us in your prayers that all goes well over the next week or so. We appreciate all of the phone calls, thoughts and prayers that we have been showered with over the past week and a half. Thank you to everyone! We will keep you updated as we receive new information.

Thank you!

Beth, Tim and Max


Sent on February 11, 2008:

Hello everyone!


We have a lot to let you all know about from our visit to Children's Hospital today. We started the day at 6:30 in the morning for a MRI of the baby to get a good look at his lungs, kidneys and bladder. His lungs are only right above average for size at this point in the pregnancy. In other words they are on the small side, but still on the low end of "average." Not great but not horrible news at this point. His kidneys are extremely enlarged but are not showing any cysts or increased echogencity (brightness to the kidneys). This is a good sign that we still have some kidney function. We were told that his case is "severe" and were given some options. We could move forward and place a shunt like I mentioned in a previous email or we could do the open fetal surgery. This is where it gets VERY scary! We have opted to move on and do open fetal surgery. The surgeon told us that the shunt, in his case, would only help develop the lungs more so than help the kidneys. The shunt needs a descent amount of pressure in the bladder to force the urine out into the amniotic sac in order to fill it up, but his pressure is building up into his kidneys instead. This could cause more damage to his kidneys since there wouldn't be as much relief as we would like. The shunt would also have to be reinserting usually about every 2 weeks, which increases a risk for both of us. The open fetal surgery is VERY risky to myself and to Max as well, but we truly feel that this is the best option for Max to have a chance at life. With the surgery, his lungs will have a much better chance for development and there will not be any added damage to his kidneys and bladder. The process of the surgery is this: they will perform a "c-section" and deliver only his bottom half. They will then cut about a 1 inch incision into his lower abdomen and then into his bladder. They will sew the flaps from his bladder to his skin to keep the bladder open for drainage. This will mean that he will be born with a small hole in his belly that will be closed shortly after birth. He will then have a catheter inserted until he is strong enough and big enough to have the obstruction removed. One of the risks that this surgery has is preterm labor. They usually expect the baby to be 8-10 weeks early. I will be on bed rest after the surgery until we deliver. The surgery will happen this coming Wednesday (Feb. 13) around 11am at Children's Hospital. I will recover there from 3-5 days and then sent home. They will have to see me anywhere from 1-2 times per week until we deliver at Good Sam to make sure everything is looking good and developing properly.

We will be the 3rd open fetal surgery done in Cincinnati and only about the 9th in the US. There have been some successes, but there isn't enough data to give statistics on it. The doctors and surgeons that are involved are very knowledgeable and seem to be pretty optimistic this is the best route to go.

This is a ton of information and I am sorry if it is all confusing- it has been a VERY long day :o) Tim and I are extremely nervous and scared, but like I said before we think this is the best thing for us to do. We appreciate and love each and every one of you for all of the thoughts and prayers that you have give to us. We are truly, truly blessed to have each of you in our lives. Please, please, please keep us in your prayers for a little while longer that all goes well during the surgery and that this little man stays in the oven until at least the end of April or May.

All of our love and thanks,

Beth, Tim and Max


Sent on February 19, 2008:

Hello Everyone!


We got home from the hospital yesterday (Monday) and all went well with the surgery last Wednesday. The doctor's said that the ultrasound they did on Thursday couldn't have looked any better. It looks to be that Max is producing some urine on his own and there are already some pockets of fluid around him the in the amniotic sac to help develop his lungs. We won't really know what kind of kidney function Max has until after he is born and they can do some blood work on him. The urologist that sat in on the surgery went ahead and poked a hole in the flap of tissue that was blocking his urine flow. This may mean that they won't have to do this after he is born, but we won't know until then. As soon as I woke up in the recovery room all of the nurses said that his feet are very cute!!! I can't wait until I get to see them!

I am doing pretty well. I am a little tender, but it gets better every day. Max is loving that he now has some fluid to swim in. He is moving around like crazy which is so awesome to feel! Tim actually got to feel it for the first time tonight- it was priceless to see his face when we felt his first kick.

I go back to the doctor on Thursday for another ultrasound to make sure all is continuing to go well. The doctor's told me that the hard part now is to keep me pregnant, so that is our new goal! We have to keep him in there for hopefully another 10 weeks, but I am shooting for 12. This would put me at 35 weeks pregnant when we would deliver.

Anyway, we are very happy with the results of the surgery and are very glad that we took that route. We truly believe that this little boy is going to surprise all of us and grow up to be a very strong and determined young man. He is our little miracle baby! Thanks again to everyone for all that you have done for us. Please continue will of all of the prayers that you have been blessing us with- they are helping! We will keep you all updated as new information is given to us.

If you have any questions please call.  I will be here at home on my lovely couch searching the web and watching a ton of movies!

Thanks again for everything!

Love and thanks,

Beth, Tim, and Max

 
Sent on March 5, 2008:

Hello Everyone!!!


It has been three weeks since our surgery and everything is going pretty well. I had a doctor's appointment last Monday and Max is measuring right on target and weighing in at 1 pound 12 ounces! The only concern was that his amniotic fluid levels weren't increasing, so I was told that if they didn't increase by my next appointment (Today) that I was going to be put into the hospital on IV's. I was told to increase my water intake to see if it would help any. So for a week and a half I have been downing nearly 2 gallons of water/fluids a day. I am serious when I say nearly 2 GALLONS!!! I went in today for another ultrasound and his fluid levels did go up a little bit, so I got to come back home- thank goodness! They just said that we will continue to monitor his levels every week to make sure they are increasing. I will continue with drinking my water in hopes that it continues to help!

I am getting a lot finished while I sit here throughout the week. We have received our stroller and carseat, Max's bedding and his furniture! Now we just have to start the nursery so that we can get all of it out of the living room. Tim has said that the house is being taken over by baby stuff and that he will eventually be completely pushed out of the upstairs to the basement.

It has been a pretty quiet 3 weeks so I don't have too much to report. Please keep those prayers coming that he continues to bake for another 9+ weeks. Once again, we want to thank everyone for their prayers, love and support! We wouldn't be here without each and everyone of you!

Lots of Love,

Beth, Tim and Max


Sent on March 20, 2008:

Hello to all!!!


I will be 28 weeks tomorrow and still pregnant!!! I still have awhile to go but am feeling wonderful and confident that we will make it to 35 weeks or so. We had an ultrasound and an office visit yesterday. The ultrasound showed that Max's heart rate is still perfect and strong and that his amniotic fluid levels have increased over the past 2 weeks! The two measurable pockets that they spotted totaled 3.4 cm of fluid. It seems very low, which it is, but the doctors like to see one pocket at 2cm to see a positive result for lung development. We have this! So woo hoo for Max!

I went into this appointment very nervous because the doctor that I was seeing is the one that Tim and I are not fond of at all. He has no bedside manner and answers questions with one word. But to my surprise after he listened to Max's heartbeat and measured my belly (all is right on schedule) we both sat down and talked about my questions and what tests I would be doing in the upcoming weeks. Needless to say I left the appointment in very good spirits.

Other than Max's increase in fluid this week, I did get the news that I will be going to the doctors twice a week from here on out for None Stress Tests (NST). Next week is my last week at only going on Wednesdays. I will then go every Monday and Thursday for the usual ultrasound to check fluid levels once a week and for NSTs on both days. Good news here: I get out of the house two times a week instead of one!!!!!! WOOHOO!

I guess that is all I have to report. I can't wait to share some more good news when I hit 30 weeks!

Thanks again for all of the love, support and prayers!!!!

Love and much thanks,

Tim, Beth and Max

 
Sent on March 31, 2008:
 
Hello All!


Well I went in for one of our two appointments today and it ends up that I am not going home until Max is born :o( The doctor isn't happy with his fluid levels, so they have me on IV fluids to see if they will increase. They will also monitor Max's heartrate 3 times a day to make sure that all sounds good and one of those will include a none stress test. His concern is that the bigger Max gets the higher the risk of compressing the umbilical cord, which will decrease the amount of blood and oxygen getting to the baby.

The doctor did mention that this is not an emergency of any kind, he just feels more comfortable with me being monitored here at the hospital than coming in twice a week. He did mention that depending on how things go that there is a chance of him taking the baby by the end of the week, but he definitely thinks that Max will be here by the end of April. With that said, they will be giving me a dose of steroids tonight and tomorrow to help his lungs develop a little more before he is born. The doctors said that Max will let them know when he is ready to be born, so they are going to base everything on him and how he "communicates" to us.

Once again, please keep us in your prayers that all goes well and that Max decides that he isn't ready until the end of the month. We greatly appreciate all that you have done for us over the past 2 months. We are truly, truly blessed to have each and every one of you in our lives.

Please feel free to call me while I am here in the hospital.  I will keep you all updated more often as I will now have even more time on my hands!

All of our love and thanks,

Beth, Tim and Max




It's kind of fun to look back and see where we were at this exact moment 3 years ago.

Thank you to all that have followed us throughout the past 3 years.  Your thoughts and prayers are greatly appreciated.  Here's to many, many more years of fun and encouraging updates on our growing family.

Thanks again,

Beth, Tim, Max and Baby L.