Sunday, February 22, 2009

More Pictures

This pic showcases Boston's chin that looks like Brian's.

Eyes open.

On our last day at Children's Mercy in his going home outfit.

Asleep at home.

Tuesday, February 17, 2009

Update to Volunteering/How Can You Help?

We have been abundantly blessed by everyone's outpouring of gifts and wanted to keep everyone updated on what would be most appreciated as our needs change.

Now that we are home we have really appreciated the meals and gift cards to restaurants that have been given. It is such a blessing to not have to go to the store and prepare meals.

Play dates for Clark are also something we are looking to set up. The best times are 9-11 and 3-5. If you would be willing to have Clark over, please contact us with available days and times.

Gift cards to Babies R' Us or Wal-Mart -- for diapers, burp rags, pacifiers, breast milk storage bags, and other baby essentials that always seem to be in high demand.

Prayer -- we can never have enough. And why stop now when our prayers have been answered so abundantly?

Contact us at if you are willing to help. Donations and gifts can be mailed to us or dropped off at 14630 W. 85th Terrace, Lenexa, KS 66215. We can't tell you how much we appreciate all of your prayer and support.

Changed Diagnosis

Boston and I went to Children's Mercy yesterday to have his labs drawn and then were back again today to talk over the results with Dr. Blowey. His lab work remains stable. His protein to creatinine ratio in his urine was 5.81 to 1. Anything over 0.5 is abnormal, so 5.81 is definitely an indicator that he is dumping protein in his urine. The expectation has been from the beginning that as he continues to dump protein in his urine that his protein level in his blood would drop too, and thus cause all of the complications, but we have not seen this happen. His protein in his blood (albumin) was 3.3; he has ranged from 3.1 to 3.8 with 3.5 being the bottom end of the normal range.

Because of Boston's miraculous stability and the fact that he has protein in his urine, but none of the other signs of congenital nephrosis, Dr. Blowey changed his diagnosis from congenital nephrosis to proteinuria (a diagnosis that means he has protein in his urine). Dr. Blowey says he looks great and we have done all that we can, so now we just watch him and keep our fingers crossed. Our next follow up appointment is in two weeks.

This is such a cause for praise in our household. I have been challenged to be completely and utterly joyful and giving of praise to God for what he is doing in Boston's life. My tendency was to be "cautiously hopeful" and to not fully embrace Boston's health as a miracle out of fear that he could take a turn for the worse. Over the past couple of days I have come to realize that God is not one who makes us "knock on wood" that he won't take our blessings away -- He doesn't punish us for being too happy with his gifts. And so we embrace Boston's health for what it is--an absolute miracle and answer to prayer. And we praise God for his goodness and mercy and for our beautiful boy!

On our way to Michelin Baby #2

Clark was famously chubby during his first six months of life. He gained weight extremely quickly, outgrowing his clothes at record speed. He was only in 0-3 month clothes for a little over a month and by his two month birthday had moved to 6-9 month clothes. By 3 months he weighed over 20 pounds, which is traditionally seen as more of a one-year-old weight.

Miraculously, Boston seems on track to match or surpass his big brother in weight gain. Boston had a bit of a leg up at birth, regained his birth weight a bit quicker, and is currently packing on the pounds. At one week, Clark weighed 7 pounds, 10 oz; Boston weighed 8 pounds, 4 oz.

Today at Boston's two week check-up we found out he weighs 9 pounds, 6 oz, a weight gain of about 18 ounces in a week! (The average baby gains 5-8 ounces per week).

This is such a blessing because often the biggest hurdle in the treatment of conditions like Boston's is getting the baby to grow. Boston's healthy appetite and his steady growth are the best indicators for his long term survival.

Clark and Boston: Brotherly Love

Our two boys are getting along beautifully. Clark is very inclusive of Boston. Clark doesn't want to go anywhere without Boston and doesn't want Boston to go anywhere without him. He will try and help carry the car seat with Boston in it, and when we return home will refuse to do anything until Boston is out of the car seat. He won't put his hat on unless Boston has a hat on too. He won't eat dinner unless Boston is sitting in his bouncy seat next to the table. And if we are going upstairs or downstairs, we all have to go.

Clark is also very protective of Boston. At church on Sunday he actually pushed a friend of ours' hand away when she tried to touch Boston. (She was able to hold Boston later when Clark wasn't around).

It is wonderful to see how quickly Clark has adjusted to having Boston in our lives and how loving he is toward him. We are so blessed!

Wednesday, February 11, 2009


We are home! We were discharged from the hospital yesterday at 2:30 and have spent a whole day at home adjusting to our lives as a family of four. My mom has been visiting to help us with the transition and she has been a big help.

It is wonderful to be home!

Monday, February 9, 2009

Blessed Be the Name of the Lord

After rough news to start and a few uncertain days, we have reached a point of cautious optimism and wholehearted praise to God as Boston remains stable. Today his levels were improved to such a point that we have been told we may be able to go home tomorrow!

He is still showing no sign of swelling. His bilirubin was low enough that all phototherapy could be stopped. He is back in his clothes and out of the warmer and in a regular crib. He is still a champion eater and sleeper.

It is still possible that Boston's condition could worsen and so the doctors are developing our follow-up plan that will involve weekly visits to the docs and labwork. We are focusing on the fact that today he is doing great -- and not worrying about what tomorrow holds. Our doctors can't explain our little hero's miraculous recovery -- we give all the credit to God.

During our week in the hospital we have had lots of ups and downs -- we have been in the land of the plentiful and we have walked through the desert place, sometimes in the space of a few hours. Through it all we say "Lord, blessed be Your name."
He must be laughing at the item of turning into the Michelin baby.
This is how babies get a tan.

Sunday, February 8, 2009

Stable on Day 5

Boston's labs came back stable this morning. He is still not swelling at all (yay!) and is eating great, which are two signs that he is holding his own. He still has protein in his urine, but for now it is not causing any serious side effects.

His bilirubin was down today enough that we could take him off the spotlight and just leave him on the paddle. It goes inside his blanket next to his back and we can hold him while he is on it.

He is gaining weight and is at 7 pounds 10.5 ounces, up from a low of 7 pounds 8.7 ounces a couple of days ago. The norm is for babies to regain their birth weight within two weeks and he seems on track to do that.

Boston has had the same day and night nurses over the weekend, which has been really nice to have that continuity. His day nurse, Stacy, is awesome, and we have been swapping baby stories. She has an eight month old daughter. The normal ratio of babies to nurses is 2 babies to each nurse, but there are two babies on our pod that are critical enough to need their own nurse. A new baby was admitted today after being born at only 25 weeks and was assigned to Stacy. She said she could take her because I pretty much take care of Boston by myself. It is nice that he is so easy to take care of. I just do the normal things, like feeding and changing him, but I also know how to fix his wires and alarms in case anything goes off, and I can navigate through all of the machinery to get him in and out of his bed without any help. I can't wait until it is just him without any wires or paddles or masks or foot wraps.
Boston on 2-7

A Few of My Favorite Things...

1) When Boston wakes up and stretches his arms over his head like Superman.

2) My orange bracelet that lets me go in and out of the hospital without going through security.

3) When Boston opens his eyes and looks around with his mouth in a little "o."

4) The free meal vouchers to the cafeteria - yum, chicken fingers.

5) The little half-smiles Boston makes right after he eats and has fallen back asleep.

6) The Ronald McDonald room where I get to sleep in between night feedings -- did I mention it has a sleep number bed?

7) The fact that Boston is able to sleep on his bed under the bililight without fussing.

8) Getting to go home at night for a few hours to put Clark to bed.

9) Lab updates in the morning when there is good news.

10) The support of my friends and family :)

Saturday, February 7, 2009

A Good Day

Boston is having a good day -- his labs came back with good levels. His protein to creatinine ratio in his urine is 3.69 to 1. Congenital nephrosis is considered to be anything above 3 to 1. Yesterday it was 7 to 1 and the day before it was 5 to 1. The doctors told us to not get too excited because the ratio can fluctuate from day to day and we are looking for trends, not snapshots. But for today, his ratio is good. Let's pray that tomorrow it will be good as well.

He had lots of good wet diapers during the night and so we no longer need to supplement him with a bottle after he is done eating.

He gained weight since yesterday -- just about 40 grams, but that is moving in the right direction. He had been down about 8% from his birth weight.

His protein in his blood is still normal. It is 3.5, which is the bottom of normal. It was 3.4 then 3.8 then 3.6 and now 3.5 -- still in the good range. If his blood protein gets too low then he will start to swell which will cause problems. Even if he has protein in his urine, if he still has a normal level of protein in his blood then he will not have the complicated side effects.

His immune system levels were good -- normal white blood cell count, etc.

The only number we are still watching is his bilirubin level. This is the number that tells us if he is still jaundiced. His number went up from yesterday and so he will be on the blanket with the light for at least another day, maybe two. His number is not awful, just high, and so they don't have to take any more drastic measures than that. It is a blessing that he is sleeping lots and doesn't mind being on the bed. We are so lucky that he is a sweet, content baby. He sleeps for three hours, eats and smiles at me, and then goes back to sleep to repeat the cycle.

It's been quiet today because I've asked people not to visit. Boston is doing great and I wouldn't mind visitors, but the Intensive Care Nursery is not a very visitor friendly place. This morning there were two emergencies with two other babies near Boston and it was like watching drama tv -- when it was all over the other members of the staff were telling baby's nurse how she had saved his life. She was visibly shaken by the ordeal. It was amazing to see how wonderful the staff is and how they are able to handle everything in a crisis situation.

Day 3 - Friday

Boston spent the day under lights getting rid of his "tan." His jaundice hadn't improved and so we added a lamp in addition to his blanket to help speed things along. He looked really funny in with his blindfold on.

We were able to get all of the ultrasounds and the eye exam today -- even though we had thought we would have to wait until Tuesday. No cyst in front of the tailbone; head ventricle still on the high side, but not concerning; and the kidneys are formed correctly, although slightly bright. Dr. Van de Voorde was not concerned with the ultrasound as it did not affect our plan of care.

Our best news of the day came with the eye exam -- Boston's eyes are normal. If he ends up being confirmed for Pierson's we will have to continue to watch them, because they could all of a sudden get worse - but it is great news that his doesn't have any blindness, retinal detachment or pinpoint pupils right now.

I am continuing to stay at the hospital so I can feed Boston every three hours. At night I have been able to find a bed in the Ronald McDonald rooms, so I can sleep for an hour and a half in between night feedings.

Boston will probably be under the lamps for another day or so depending on what his levels are on Saturday. We will continue to watch him closely over the weekend, as this time is when the other effects of losing protein, such as swelling and lack of appetite start to occur. Whether he gets worse over the next few days will tell us a lot about the plan of care we can expect.

Friday, February 6, 2009

Taken on 2-6
Taken on 2-5

More Pictures

Taken on 2-4

The testing begins...

Good morning! Sarah here. Boston says "hi" as he sleeps contentedly (his only 4 jobs being: eating, sleeping, pooping, and wait for it...awesomeness). We have had a magical first few days with him. It is hard to believe that he was born only 54 hours ago.

We were transferred to Children's Mercy yesterday afternoon around 3. Thanks to everyone who called or stopped by while we were at St. Luke's. It was a whirlwind of activity as we crammed as much visitor time as we could into his first day and a half in the world. Last night I got to sleep about 5 hours, but before that I had slept maybe four hours since Monday night.

Medical news: Boston's initial urine test at St. Luke's showed that he had large amounts of protein in his urine, which was sufficient for the kidney doctors at Mercy to say "Okay, yes, there is something wrong with the way his kidneys work." Having large amounts of protein in your urine is the hallmark sign of congenital nephrosis. Our plan for testing and care has not changed -- we will still need at least a week here at Children's Mercy to get a more accurate picture of what is going on with his body -- the doctor's look at trends, not snapshots, so while we will try to be as forthcoming with the updates as possible, be prepared for us to not know anything certain for a while.

More medical news: while Boston does have a large amount of protein in his urine, and thus likely has congenital nephrosis (which would mean a kidney transplant), the other signs of "Pierson Syndrome" (which can be just congenital nephrosis or congenital nephrosis and other things) are not presenting initially. His big brown eyes do not have the "pinpoint pupils" but we are going to have a full opthamalogic exam next Tuesday. He has good muscles and reflexes. He is eating really well. All of these things could change, as this syndrome can be progressive (things not being there at first and then showing up later).

Support: we would appreciate it if people would not ask us for medical updates or about what is going to happen with Boston's condition. As far as we are concerned, he is just a normal baby. We get comments from the doctors and staff that he is a normal baby; that he "looks great" and is doing all of the normal things that normal babies do, except he has a large amount of protein in his urine. It is too early for us to speculate about what his tests could mean; it will just take time to know anything. The earlier posts in the blog have more information about congenital nephrosis and the tests that are going to be done this week. Also, while this news is not "optimal," it is what we were planning for and we are proceeding with the plan that we had set up before he was born. We are in good hands with the doctors here. We don't want people feeling sorry for us or treating us or Boston any differently.

Fun news: Boston really is awesome. He is beautiful and smells good and loves to cuddle. He knows his momma and his dadda and while he spends most of his time sleeping, he also has alert times when he just stares up at us. Yesterday he was awake and kept trying to grab Clark's shirt with his hand, but Clark was not interested. I don't think Clark has figured out that Boston belongs to us yet. I am sure that day will come. :)

Communication reminder: Children's Mercy is a blackout zone for cellphones, so if you get sent to voicemail, you can bet that we're here.

Wednesday, February 4, 2009

Baby Boston Ethan Preston was born at 11:15 pm on February 3, 2009!!!
He weighed 8 lbs. 3 oz.
He is 20.25 inches.
Mommy is doing well.