Go, Lenwood, Go!

Saturday, July 2, 2011

THE BIG APPOINTMENT...

...AND THE WONDERFUL NEWS!

I prayed for a miracle of complete healing for this sweet one and I asked everyone I knew to do the same. God listens and he's working on it, I know, I believe. We had lots of great news today. Lenwood DOES NOT have the rare form of DENT Disease (a rare genetic kidney disease). In addition, his kidney ultrasound looked 100% normal and beautiful. His kidneys are no longer enlarged and there no signs of calcification. His calcium tests came back normal and one of his two protein tests came back normal. All great news and all things had not been normal before!

So, we're not there yet, but we're on our way....He's working on it! The second protein test (protein creatinine) was elevated. And Dr. GW said, were it not for his high blood pressure, this one test would leave her to say, "Come back in a year and we'll check on it again." But, Lenwood's blood pressure is high and we now have no idea why. We have to find out and hopefully fix it.

She considered taking him completely off meds for one month, but decided that the bottom number on his blood pressure, diastolic, was just too high on almost every reading. So, she took him off his diuril(for calcium leakage) and adjusted his lisinopril (bp medicine) dose. This turned out to be a MAJOR blessing because she discovered the prescription for lisinopril was written incorrectly. Lisinopril is a blood pressure med Lenwood was changed to a month before by another doctor because of high bp readings. Lisinopril is a ONCE a day medicine and our prescription bottle read THREE TIMES PER DAY! DR. GW ran a test and found very, very minor and reversible kidney damage due to this error and will check it again when we return. She expects the damage to have reversed itself on the correct dosage of lisinopril. We pray that his kidneys will heal and his blood pressure will regulate to normal levels.

We were so relieved to have such a hopeful appointment. Going in, we were terrified as to how our lives might be forever changed after this appointment. It was SUCH a relief to get good news instead of bad...such a relief.

We have to diligently check his blood pressure to gather data for the doctor before his next appointment in August. I had his blood pressure checked on Monday and we just barely got it in under the limit she has set for him. I had it checked again on Thursday and he had a wonderful, perfect, nowhere-near-his-limit reading!

Thank you for your prayers, concern, love and support! Keep it up! They are working!

Thursday, June 16, 2011

It's been a while...


Memorial Day 2011~10 months

So, it's been a while....I never did get "The Good" post up. I had these grand ideas of pulling pictures of all the amazing moments from the boys lives to post in it, but let's face it....I'm busy making memories and chasing them around and surviving the never ending virus that keeps passing around our home so that we haven't all been well in at least two months...so all the ideas for "The Good" post are still flowing around in my head and will get onto the blog eventually....I promise. Those that know me well know that I have wonderful intentions and really grand ideas, but sometimes it takes me a while to follow through with them.

So, what brings me here today...well, remember that rare form of that rare genetic kidney disease Lenwood's big time specialist was testing him for...one week from today we find out the results. Our last appointment was in March. I didn't post after that because it was basically a check up and a blood draw for this genetic test. Since that appointment I've pretty much lived in a little land called DENIAL. I pushed thoughts of this disease and all that it might mean for this sweet baby to the very deepest recesses of my mind. Usually I'm a worrier and I'm surprised that I haven't spent everyday crying and worrying. I did do that for a couple weeks, but then I began thinking about last summer...last summer when I was lying on the couch on so many medications that I didn't have the energy or focus to implement any of those grand ideas I had to keep the boys and I entertained while I was on bedrest. Then there was the emergency c-section and the 63 day NICU stay. Last summer we were fighting hard for sweet baby Lenwood and it was a battle I'd fight over and over again especially if it would take away from his suffering. He is one of the sweetest, most social, loving, joyous babies I've ever met. But, last summer I feel like I missed so much of Conrad and Teague's lives. I know I was doing exactly what I needed to be doing, but this summer, I'm not wasting a second. I didn't enroll the boy's in summer school and we have big plans for lots of fun. We've already spent 10 days at my parents on the lake and in Haleyville. We just finished two weeks of swimming lessons and tomorrow we're going to Birmingham Children's Theater to see The Little Red Hen. No school this summer...just soaking up every minute with these three amazing boys while I can....only one school year left before Conrad goes to kindergarten and this sweet world of togetherness changes forever. Gotta enjoy it while I can. It's not long before a new stage of life begins.

So...all that was to say, I decided to focus on getting lost in summertime fun with my boys rather than worrying. God granted me peace and joy by sending this worry to the back of my mind. But now as THE APPOINTMENT inches closer I can't help but feel the worry and anxiousness creeping back up and the "what ifs" start popping in my mind at all hours of the night and day. Luckily, I've got lots of fun to distract me, but as I sit in this quiet house (all three are amazingly napping) I can't help but hear those little voices of worry calling out.

To add to that worry, at a sick visit Saturday, we found Baby L's blood pressure to be too elevated. Not sure why. His nephrologist recently changed his blood pressure medicine to a longer acting one since it had been running a little too high and this was the first time it had been checked since the change. Not sure if we didn't have the dose just right or if something is getting worse. I just don't know. At our last visit with Dr. Benfield there was no extra protein in his urine which was a first (likely due to him taking Diuril) and his kidneys are both normal size. So there's good and not good. Today, although the bad is nagging at me, I will focus on the good and the power of prayer and miracles and although we've had far more than we deserve, this baby...this sweet amazing baby deserves as many miracles as he needs so I will pray and I will ask you to pray for another miracle for precious Lenwood. I don't know what it will mean if this test is positive. The doctor won't tell us and since he would only be the 6th diagnosis in the world, I can't google it. So I'm praying for the ultimate miracle....kidneys that heal so that this baby doesn't have to take all these medications, doesn't have to endure the effects of high blood pressure beginning in infancy, and doesn't suffer through kidney failure and a kidney transplant. I will trust in our amazing God because only he knows the plan and I will pray.

It has been a while and this sweet boy has grown. He'll be 11 months old in a few days...where in the world has it gone? Here are some pictures of this sweetheart!


FIVE GENERATIONS

Lenwood's Baptism 6/12/11

Lenwood's baptism

Mother's Day with Guy's Granny

More pics to come later...going on a date with my amazing husband tonight!

Tuesday, February 22, 2011

A brief history of us - Part 1 - The Bad and Ugly!

Many of you have been asking about the medical events in our lives the last few years so I'll attempt to give you a brief recap of the craziness! This is part one..the bad and ugly. I must add a Part 2: The Good and beautiful because throughout all of this we have been so blessed with joy, love, beauty and amazing miracles. That will be my next post.

So here's the Bad and Ugly...The Good to come next post:

A few months after celebrating our first anniversary, I found out I was pregnant with our first child. I miscarried early on. We were heartbroken with this loss. We could not get my hormone levels back to normal. So I went through a DNC. No luck. Then received a chemotherapy treatment. Finally two and a half months after the miscarriage my numbers were normal. After grieving that loss and the medical drama that went with it, we got pregnant again. We were terrified for a while, but once we reached 18 weeks we began to feel like everything would be ok. I was due December 20th. On September 26, my birthday, my car wouldn't crank. The ignition wouldn't turn. After working with it a bit, I called my husband. He came home and I took his truck to work. It wasn't until that evening that I found out all that had gone on in my absence. The dealership sent a tow truck to bring in the car. Let me interject that I'd only had the car two months. Upon arriving at the dealership, the mechanic and tow truck driver were unable to get the car off the tow truck. The mechanic crawls under the car ( still sitting on the tow truck - at an incline). While he's under the car, it comes loose and drags him off the tow truck and down an embankment behind the dealership. My first new car ever. I'd been driving my used Toyota Camry since I was 16. The car we bought so we'd have something new and reliable for our first born child.
Of course our first concern was the mechanic. But there was little we could do about that except pray. So we had to take care of getting a car for the 28 week pregnant woman to travel to and from work. The dealership and tow truck company were in dispute over whose fault it was. In an effort not to look guilty the dealership would do absolutely nothing to help us. No rental car. No loaner car. No repairing our car yet they still had it. They basically said I'm sorry, but we can't do anything right now. Three days later I went into labor. The hospital did everything they could and helped my son stay in the womb until I reached 29 weeks 2 days. Conrad was born weighing 3 pounds 3 ounces and went straight to the NICU.

Conrad in the NICU on his birth day.

He was 10 days old before we held him.

Most amazing feeling in the world.

My favorite NICU pic of Conrad. So sweet. A few days before he came home. Look....no tubes or needles!

He spent 50 days in the NICU fighting for his life. He came home Thanksgiving weekend.

We were on house arrest due to flu season until March, but were thrilled to have our beautiful son, Conrad home. Much to our surprise, in April we found out we were expecting our 2nd son. My OB wasn't too concerned as they'd found no cause for Conrad's premature birth. Still my husband gave me a shot each week to prevent preterm labor. Did I mention that we had to move from our tiny two bedroom, one bath, 900 square foot absolutely charming home in Crestline Gardens while I was pregnant. The house sold immediately and we had nowhere to go. One week before we had to move out of our house, we had no where to go. So here I am pregnant with a 9 month old trying not to go into preterm labor with no place to live in a week. I called every rental we could find and even extended stay hotels. Rentals laughed in my face and extended stay hotels would've eaten through our new home down payment in a heartbeat. So I swallowed my pride, it was a big gulp, and e-mailed everyone I knew. Hallelujah, a former colleague saved the day. Her husband and some friends were trying to flip a town house, but were dragging their feet finishing it. We moved in and rented it which bought the guys some time to take a break before finishing it. In the middle of all this, an ultrasound reveals that our unborn child has an extremely swollen abdomen. We were sent to specialists at UAB who had us return each week for special in-depth ultrasounds. We were told it was likely hydrops which has a very small survival rate. Each week we had to come with a bag packed because if they saw any swelling elsewhere in his body a hydrops diagnosis would be made and we'd be hospitalized for the remainder of the pregnancy in able to sustain his life as long as possible. At 30 weeks, I woke up and he was on his way. Despite a team of nurses and doctors rushing to stop labor, our second son, Teague came that day. Due to the swelling he weighed 4 pounds 4 ounces, but almost a pound of that was excess fluid. He looked so pitiful when he was born.


Teague in the NICU on his birth day. Can't tell as well b/c I had to crop the picture, but his poor tummy is huge and this is after he looked better. When he was born he was purple, dark purple. And he didn't cry. It was terrifying.

After he tee-teed of the extra fluid. Notcie all the excess skin on his tummy

Sweet baby

More swelling. He would swell, get diuretics, swell again, get sick. It was such a rollercoaster for this poor guy.

Proud big brother. It was so amazing. I took Conrad with me once a week for about 30 minutes to visit. When we went in all the nurse wanted to see him, but he always stared and pointed at Lenwood's bed. he wanted to go there first. Somehow he knew and he loved...oh, how he loved that baby.

First time we help him. It was only briefly while they changed his bedding, but we were so excited!

First family photo

He was a week old before we held him. The NICU ran around 100 tests to determine the cause of his abdominal ascietes (swelling) and found no cause. He was a very sick baby and had many ups and downs in the NICU before coming home after 60 days on Christmas Eve.

People kept asking if it was easier to have a preemie the second time because I'd done it before. No, it was excruciating. As a mom, you know what I mean when I say that when your baby is born every part of your being desires to nourish and care for that child. With a preemie, you can't. I remember my chest aching for the feeling of my child lying against it. When Teague, my second child, was in the NICU it was even harder because I felt like I had to choose one of my children everyday. Do I spend time with my child fighting for his life in the NICU or my child whose entire life has been turned upside down.
But finally our little family was together and everything was going to get better. We had a few bumps in the road. Conrad had several multi-day stays in the Pulmonary Care unit at Children's Hospital including his third Christmas. Teague had several stays at Children's as well with testing to determine the extent of the damage his extremely severe reflux had already done to his stomach and esophagus in his short life.

Teague having one of several 24 hour ph probe studies at Children's Hospital

But, we were getting answers to both of these and medical treatment that made both livable. It had been a tough road, but we could not complain. We had two beautiful boys who were happy and healthy. We were so thankful we had been so blessed.
Soon after Teague's first birthday his gastrointerolgist (reflux doc) found some suspicious results with his immune system. We were sent to an immunologist for further investigation. His immunoglobins were extremely low and were not at a level high enough to protect his body from illness and disease. In addition, his body was not using his vaccines properly so they were not of any use to his body. Thus began Mommy's new role as a nurse. Each week, I would put two needles in Teague's arm that would remain in for about an hour while a concoction of donor immunoglobins went into his sweet body.


Teague with his infusion bag. He could carry his pump around in the bag and play while the meds were going in. He was SUCH A BIG BOY! I couldn't have been prouder of him handling this so well.

This went on for over a year. His immunoglobins were doing a little better, but were still low. Currently we are on a trial of Teague off of his immunoglobin donations. At some point he may go back on possibly for the rest of his life. Each day we pray that his body will make immunoglobins so he won't have to endure this.

So, you think this might be the end of our drama...but no. Last February, we found out we were expecting again. As you can imagine a range of emotions filled us. We were thrilled to bring another child into our family and terrified at what might happen. We had not tried for more children because we didn't feel right putting them through such a tough start. Apparently God had other plans. Our third son was due September 2010. His was a very dramatic pregnancy as my OB felt certain he would come early. I spent many nights in Labor and Delivery with signs of preterm labor. I spent several different weeks in the hospital with contractions. I was put on bedrest, weekly shots and pills every two hours that made my heart race so badly that it took me fainting (which I'd never done in my life) for them to take me off them. They tried another pill that didn't work and after another week in the hospital I was put on a terbutaline pump. Needle in my leg 24 hours a day constantly pumping me full of medicine to stop contractions. Around this time, they discovered that my third child also had a very swollen abdomen and the fearful weekly watch for hydrops began with him. At 31 weeks 4 days, my OB called me. She had run some tests on my liver and the results were frightening. I was in the beginning stages of liver failure and had to be admitted to the hospital. I was diagnosed with HELLP syndrome, a rare form of preeclampsia. In the wee hours the next day, as my liver panels worsened, the baby went into duress and was taken via emergency c-section. Lenwood weighed 4 pounds 10 ounces.

The neonatologist removed 10 ounces of fluid from his abdomen that day. He was very, very sick the first few days of his life. Another miracle happened in our lives and he began to turn around. He struggled and fought for 63 days before coming home a week after his due date. One of the hardest parts of Lenwood's NICU stay was the change in visitation to the NICU. Conrad and Teague did not get to meet Lenwood until the day he was discharged from the NICU. Everyday they begged to go with me to see Lenwood and every day I had to try and explain why they couldn't. Some days they cried. It was so heartbreaking. It was bad enough that I had to wait 10 days, 7 days and 14 days respectively to hold my children, but 63 days for my sons to meet their baby brother was heart wrenching.

Lenwood coming home!

Yet, we were so grateful and felt we'd been granted another miracle. How could we be so blessed to have so many scares and walk away with a miracle each time? One gracious God.
On January 6, 2011 we found out that sweet baby Lenwood possibly has a rare (and by rare I mean he'd be the 6th diagnosis in the world) kidney disease. Here we are in limbo again waiting, terrified, and praying for yet another miracle that we don't deserve, but one that this sweet baby certainly deserves.
I think this might be the first time that I've sat down and really thought through everything that has happened in the last 5 years. Wow! That's a lot. But to me, the amazing part is they joy we have shared together. Through it all we have loved, and laughed. I have certainly cried many tears and pleaded with God more times than I can count, but the joy of these three children outshines it all. I love them more than I could ever describe in words and I would give anything to take away all that they have endured.

Sunday, January 23, 2011

Cloth diapers

So, I'm getting ready to invest in cloth diapers for Mr. L. How about you? Any luck with cloth diapers? What is the best one?

WANT TO WIN A TOTBOTS / EASY FIT ONE SIZE POCKET CLOTH DIAPER? They're giving one away here: http://mamato3blessings.blogspot.com/2011/01/bummis-totsbots-easy-fit-one-size.html
Sounds like a pretty good innovative new diaper. Check out the review!

Saturday, January 22, 2011

More results on Teague/Update on Lenwood

So I spoke with Dr. B on Wednesday. I didn't realize that they sent more tests out for Teague, but they had. His protein creatinine was completely normal, but his calcium creatinine was more than double normal. At this point it doesn't mean anything except we need to test again. A number of things can cause it to be high for one test such as an excess of sodium in the 12 hours prior to the test. However, if the results are the same on a second test, then there's likely a problem with his kidneys. We see Dr. B on March 10th and will have Teague tested again.

Sweet Teague watching out the window for Daddy

Lenwood has started his blood pressure medicine and seems to be doing alright with it. He had a couple nasty diapers at first, but that seems to be okay now too.

Keep praying for two of my boys now. Not sure if they'll want to test Conrad at some point or not. We'll see.

Lenwood has his 6 month checkup with Dr. Farr on Monday so we'll see what his input on all of this is.

The last couple of days have been a little better for me. Not crying nearly as much. Starting to accept the possibilities. Hold us close in your prayers for a bit longer. This is scary. We've climbed a lot of mountains in our 5 1/2 years of marriage. I know we'll get past this one too.

Lenwood loves his playmat! He wants to roll over so badly!

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

Monday, January 17, 2011

Looks like we need to start cheering on our little fighter again!

Here's an e-mail I sent to our family on January 7th that fills you in on what's happening with Lenwood. I'll update you with more recent developments at the end. I apologize for the copy and paste, but it's just all that I have in me right now.

January 7, 2011
Just wanted to update the family on Mr. L's appt with the BIG dr. yesterday. This is the dr. we've been trying to get an appt with since the last few weeks of his NICU stay. She saw us and now she wants to hang on to us.

I was so hopeful that 2011 would be much less dramatic for us (or medically for my children), but it seems like the roller coaster ride is going to last a bit longer. We saw a world renowned pediatric nephrologist yesterday. She's also a geneticist and microbiologist.
Yep - just knowing a world-renowned doctor has taken on and is excited about my child's case is scary enough.

Here's the deal: Lenwood has extremely high levels of protein, calcium, and phosphorus in his urine. This means there is a problem with his kidneys as these things should be staying in the blood not leaving through the urine. They think that he has two problems. Let me try to explain: The kidneys are made up of anywhere from 300,000 to a million nephrons. Each nephron has a filter and a tube. They believe the filters (protein leakage) and the tubing (calcium and phosphorus leakage) are both functioning incorrectly. In addition, it appears he know has high blood pressure due to this which can be troublesome for the kidneys, heart, and other organs. She believes he has a specific genetic abnormality that causes this. He would be the 6th diagnosed case in the world if this is what he has. It is obviously newly discovered and we don't know much about it or what it will mean for him. So, we remain in limbo for a while, a worrisome, fearful limbo.

As for the blood pressure, she wants us to start him on medication. However, we are reluctant to start if it is not necessary. They checked his pressure multiple times while we were there and with multiple machines. Additionally, he was hungry, overtired, and upset after some traumatic labwork. We have an appt with his regular nephrologist Monday so we are going to have it checked again to see if his pressure remains high. His top number for his BP is supposed to be about 105. His was 121-137 during the many times his BP was checked.

We were very impressed with Dr. Guay-Woodford. She's extremely knowledgeable and was also very good at explaining what's happening with Lenwood to us. Here's a link with some info about her if interested:
http://main.uab.edu/Sites/MediaRelations/articles/60185/

We are very grateful that someone has taken an interest in Lenwood's case. She also is hopeful that once she determines Lenwood's diagnosis she will be able to connect his and Teague's ascietes (swollen abdoemen they were born with). This would certainly be an answer to a prayer. We don't care so much about giving it name. We just want to know that the ascietes was the thing and it's over with and know that the ascietes was not a symptom of a thing that will rear it's ugly head later in our sweet boys' lives.

Before Lenwood was born, I'd never heard the word nephrology or knew that such a complicated system even existed in our bodies. The neonatologist confessed to me that he hated nephrology and was so glad there were specialists because it is so complicated. And that was coming from Dr. Bruce, who Guy and I both think is a brilliant Dr. He was a miracle worker for all three of our boys!

Here's the more recent stuff: Due to the snowstorm we were delayed in seeing Lenwood's regular nephrologist, Dr. Benfield, until this past Thursday. We had some good news at Dr. Benfield's. in an effort to see if Lenwood's kidney issues are related to his and Teague's ascietes, they ran tests to see if Teague's urine had high levels of calcium, phosphorus, or protein. Teague's urine is 100% normal. So the good news is Teague appears to have healthy, normal functioning kidneys. That leads us to believe the ascietes aren't related to the kidney issues Lenwood is having so we're still left with the lingering question about the ascietes and if it will mean anything in the future
The other piece of good news: Dr. Benfield did an ultrasound on Lenwood's kidneys. In previous ultrasounds (as recent as December 15th) Lenwood's left kidney was enlarged. At this visit it was normal. This is good news as being enlarged caused his kidneys to have to work harder.
So, for the rest of the news. The question we didn't think to ask when we saw Dr. Guay-Woodford was an important one. I guess we were a little surprised and shocked and trying to absorb it all. We forgot to ask: "What does this mean for Lenwood? How will this affect his life?" We had a chance to ask Dr. Benfield these questions. He believes that Lenwood's problems with his nephrons are either genetic or developmental. Genetic would be a genetic abnormality like Dr. Guy-Woodford suspects in might be. Developmental would be where something happened during development in the womb or NICUnephrons to develop incorrectly. Developmental would be a little better than genetic. This is how Dr. Benfield explaining what this means to Lenwood: All of us are born with waaaaaaaay more kidney tissue than we need. Most people actually suffer some sort of damage to their kidneys during their life and never know it because the extra tissue picks up the work for the damaged tissues. So, we all have a lot of "kidney reserve." In cases like Lenwood, one worries that he will run out of reserve. When and if that time comes, Lenwood will need a kidney transplant. He did say that there will be a lot of clues/symptoms before he needs a transplant and plenty of time to prepare.
Please pray that Lenwood's kidneys will heal and he will not need a transplant. I don't know if healing is even an option, but Dr. B was really surprised they were no longer enlarged so let's just go ahead and pray for the miracle.

Hanging out with Daddy

Helping Mommy with the laundry. And no, I'm not trying to make a fashion statement. I just hadn't taken his sleep sack off yet. He'd just woken from a nap.