"Complete Resolution"

Well Rhys,
The downside to turning two months old is that you have to get shots.  Sorry buddy.  You were very brave because you have been poked with about 100 needles in your little life already, so I was happy that you were easy to soothe.  Mom packed a bottle so you could eat right afterwards and take a long nap.  The doctors said you weighed 9 lbs. 4 oz and that you had grown to 21 inches long.  You are almost too big for your newborn clothes and we have officially moved up to a size 1 diaper.  And can I just say that you are getting more and more handsome every day?  Not in a biased way at all.

Our latest visit to the GI doctor went very well too.  She was pleased to see your latest lab results and how big you are.  She said your coloring looks fabulous and that she is happy that your liver is functioning so much better.  That means we can stop using the special formula and just stick with milk as long as you seem to be growing and getting better.  She wants us to come back for blood tests in another month, but she said that she really feels that at that point you should have "complete resolution" and have all your numbers within the normal range!  I was so pleased to hear that since no one has estimated when you would be all better.  Way to go Rhys!

You are a pretty happy guy most of the time.  You still eat about every four hours, but at night we tend to let you sleep until you wake up hungry and sometimes it is a good stretch of 6 hours or so.  Thanks dude!  We have started swaddling you in a blanket that velcros since you would wiggle your arms out and touch your face (which always woke you up and made you mad...) just like Cameron used to do.  I think I even have pictures of her looking exactly like this.  Of course, she also liked to sleep with her butt up in the air and she sucks her thumb even to this day... Maybe you can avoid those habits!

It has been so wonderful to spend the last month at home with you, Rhys.  I will admit that I like my job and often say that I am not cut out to be a stay-at-home mom.  It is hard work to be completely devoted to another person 24 hours a day!  But in this short span of time, I have seen you grow and change so quickly.  You have started to smile when you recognize people.  You are more alert and are really great at holding your head up.  Just the other night, you even rolled over from your tummy to your back!  It makes me so happy that you are getting stronger and makes me feel more comfortable with the looming date of when I have to go back to work and you will start going to Cameron's daycare.  They will certainly love you there and take excellent care of you, but it just won't be the same as these days that I have gotten to enjoy with you.  I hope I never forget how it feels to have you take a deep breath when you are napping on my chest, or the way your eyes are a deep grayish shade right now.  Who knows if they will turn to light blue like your daddy's and Cameron's.  You will always be my baby boy, no matter how big and tough you turn out to be.

Love,

Mama

P.S. Just for fun, here is a cute shot of you meeting your 2nd cousin Cason.  He was less than a week old at the time and you were practically the same size!  I know you will be great friends someday!

Tired of Me

Cameron,
It was a very long week with you being sick.  You wore me down and watched WAY too much television, which meant that I was subjected to every episode of Dora the Explorer that we could find. And as much as it embarrasses me to tell everyone this, I am gonna do it anyway.

You had been complaining that your tummy was hurting, so we tried two different kinds of medicine and thought it had done the trick.  Then you started coughing, so we got some cough medicine and figured it would go away.  Then you started running a low grade fever which would go away once you had some ibuprofen.  And after all that, I still didn't think you were terribly sick.  I kept you home from school because of the fever, but I was really exhausted having you and your brother to take care of all day.

Then your daddy asked how long your cough had been going on... I said maybe 4 or 5 days, but you sounded like it was productive and weren't acting like you felt awful.  He thought he would ask our dear Dr. Keith just to be sure... And when he described the symptoms, Keith said it could be something more serious than just a cough and that we should get you in to see a doctor.  He even mentioned that he had seen a bunch of cases of walking pneumonia.  So Daddy loaded you up on Tuesday night and took you to the walk-in pediatric clinic.

And sure enough, you were diagnosed with walking pneumonia.  I felt so terrible.  Even though my friends reassured me afterwards that they wouldn't have been freaked out by your symptoms either, I still had some mommy guilt working on me big time.  Apparently since your brother came along, you are just left to fend for yourself!  Ugh.  I was so thankful that your daddy took the time to analyze the situation better than me.  Thankfully it didn't go on too long and make you even more sick.

So the doctor gave you a strong antibiotic and said you should follow up with our regular pediatrician in 2 days.  Then you had to get a nebulizer treatment (mercifully short) and use an inhaler for the next week or so until your cough went away.  You weren't too keen on the idea but we had many conversations about how medicine isn't going to taste good or be wonderful, but we just do it fast and get it over with.

I knew the week had been wearing on you as well when you had a bit of a meltdown on Thursday night.  Daddy has been coming home late because of football and you looked at me with big teary eyes and said, "I miss Daddy!" I said I do too.  Then you said, "I'm tired of you!"  And thankfully I held my tongue and didn't say that I was tired of you too.... I just said, "I know."  I just keep reminding myself that we made it through football season last year and we can do it again.  Certainly with the help of medicine and Dora on TV.

Love,
Mama

We are All Smiles

 I simply can't believe how far we have come in just these few short weeks.  This was Rhys about six weeks ago. 

And look at him now!  He has gained well over a pound in just the last two weeks, and now he weighs 8 lbs 12 oz!  He is even starting to look a little snug in the newborn size onesies and diapers.  Yesterday a nurse measured him at 21 1/4 inches long so he is finally back on the growth chart and gaining.  

What a happy boy!

The doctor at Texas Children's got the test results from our Monday visit and the numbers look even better than the week before.  His direct bilirubin is down to 0.8 and is no longer concerning at all, and his liver enzymes are all down in the 80's and I believe normal is around 45 or 50.  We are so excited to be moving to a point where we can stop having so many doctor's visits and just enjoy our sweet boy as he grows.

We have some extra smiles today because my sweet cousin Brittney delivered a healthy baby boy yesterday named Cason, and we are sure that he and Rhys will be great buds.  We can't wait to meet him!

Our God is so BIG!

We are sitting in the lobby of Texas Children's Hospital and the thing that keeps running through my head is the song that Cameron likes to sing...

"My God is so BIG!  So strong and so mighty, there's nothing my God cannot do!"

We came back to Houston last night and were blessed by another friend with a great deal on a hotel very close to the hospital.  We even had a gift certificate for a nice dinner out, which Rhys slept all the way through.  It was almost like we were on a date, but I told Bo I felt like I was staring at another dude (Rhys) the entire time, so maybe I am a lousy date.

This morning's appointment with the liver specialist started off positive since he has gained a significant amount of weight in the last two weeks and she was pleased with the test results from our last visit.  However, there were lots of tests that we were unable to run because it would require drawing too much blood, so there were still some things she wanted to rule out like genetic liver disorders.  There was even one test that would require a follow-up DNA test since it came back with inconclusive results.  She also had to call to track down the results from the liver panel that we had done last week in San Antonio because they never sent her the results.

Then came the dreaded words: liver biopsy.  Things were trending well but she still wanted to get it done so that we could completely rule out a ton of things all at once.  She said it wasn't completely urgent, so we scheduled it for the end of next week.  She also recommended that we speak with her dietician, who came in to discuss our mixture of Elecare formula and make sure Rhys is getting the right amount of calories.

At this point, our brains were feeling kind of muddled.  We were trying to keep straight all the scheduling and prescriptions and honestly I think we were both worrying about how we were going to bring our whole family back and plan to stay here for three days.  I was at peace with him getting the biopsy here so that it would be less invasive and I told Bo that I was thankful that he was bigger and stronger now, so I figured his recovery would be easier.  And at least Cameron could go to the Houston zoo for the first time.  :)

Suddenly (not trying to be overly dramatic, but it really was suddenly) our doctor came back in the room with the results from the liver panel last week with a big smile on her face.... She said his direct bilirubin is down to 1.4!  His liver enzymes have dropped from the 220's to 87 and 97!  She said she knew he looked better but she is very surprised that he is that much better!

With that much improvement, she said we would run another panel today but that we would most likely CANCEL the biopsy after today's results. We scheduled our follow up appointment, but the doctor's assistant told us we might even reschedule it for a month or two later based on today's numbers.  We both had tears in our eyes when we realized what a dramatic swing our morning had taken.

The dietician was also surprised at the change and said that because his liver is improving so much that we can begin weaning him off of the Elecare completely!  We will slowly make the transition this week and keep using the thickener until we are sure that he is still getting enough volume and calories to avoid his weight dropping.

Now we have to keep all the other doctors in the loop with the changes, but we are happy to do so.  We are so thankful for prayers and we know that Rhys has made a miraculous amount of progress in just these few short weeks.  Our God is big enough to work in even the tiniest of things!

Don't Make the Mama Bear Angry

Rhys & Daddy had a great time watching the Dallas Cowboys win their first game of the season the other night.  He was worn out from having more blood drawn that afternoon to have his liver enzymes tested again.  We did get good news from the doctor in Houston - his direct bilirubin was down to 3.0 last week!  We have to get more tests run tomorrow since they had to use all the blood they drew on that one test.

This week I have been really frustrated with the company that we are supposed to get all his formula and thickener from.  They had the prescription from the doctor for two weeks and never got anything done.  When I finally called and threw a fit, they said that they had been trying to get our insurance approval every day but just couldn't seem to get a hold of anyone.  I found it hard to believe that they couldn't reach anyone at the largest insurance company in the entire state of Texas.  I threatened to have a competitor handle our order.  I even found another company that was ready to take care of it.  And then magically they call me back and they can ship it out THAT DAY.  Really?

So our order arrives the next day and it has two cans of the thickener and two cans of the plain formula.  Unfortunately, he eats a mixture of 1/2 plain and 1/2 vanilla formula because the original apparently tastes (and smells) horrible.  So now I have to call them back to figure out how to get the other kind.

Oh but wait.  Today we received another delivery from UPS.  It was 30 cans of thickener and 16 cans of the plain formula.  I have no idea why in the world you would send that much when your customer is already unhappy with you.  That is probably 8 months worth of thickener!  We use about 5 tablespoons a day!  Not sure when I will have time to deal with that again, but I am so glad that it has added itself back to my list.  Do you think my phone call will get recorded and used for training purposes?

Our other appointments today included our dear friend Nelson, a photographer that gladly took some pictures of Rhys even though he refused to go to sleep or cooperate in any manner whatsoever.  I think he got a few good ones but mostly it was him waving his arms around and opening his mouth oddly.  At least he thought Rhys looked cute anyway.

Then we headed to the developmental pediatrician.  Not gonna lie, it makes me nervous every time I hear all the things that Rhys could potentially have trouble with.  There are so many unknowns but they seem very determined that his health problems leave him a big chance of not meeting his milestones as he grows.  There were 3 boys in the waiting room that slightly terrified me.  But the PA that saw Rhys said that he seems to be on track for his age and that his weight gain is really good.  He was up to 8 lbs 4 oz!  I was very surprised!

The big takeaway is that now we will start seeing a speech therapist who will hopefully come to our house and help with the feeding issue.  The PA seemed very concerned that he can sometimes take an hour to finish a bottle, and she said there may be some oral exercises or therapy techniques that can help him learn to eat more efficiently.  Then we will come back and see them again when he is four months old.  I know we will be praying that he will continue to grow and develop just as he should so he can be just as smart and full of personality as his big sister.

Better go make the best use of my time that I can while Daddy is feeding him... I do want to say that Bo has been the most appreciative husband.  He knows that right now I am bearing a lot more of the load when it comes to taking care of the kids, but I know it is only for a short while because of football.  When he is home, he is so helpful even though he is exhausted too.  I know these days will pass and we will look back on this in a blur.  Some day we will finally make time for each other again.  I am lucky that we love each other through all kinds of circumstances.  Right now we are like a bear hibernating in the winter, just living off all the fatty reserves that he stored up earlier.  In just a few months time, we will come crawling out of the "newborn" cave and start acting like normal bears again.  :)

Mustaches and thank yous for everyone!

Just had to share... We have a little project in the works to say thank you to all the people that have blessed our family with meals and cards and prayers.  This week we were blown away when the staff and coaches at Bo's school gave us over $500 in cash and gift cards to H-E-B.  Since I will be staying home from work for another month with you for sure, this will be a huge blessing.  We are so thankful that God has surrounded us with a family here in San Antonio.

A Week Gone By in a Blur

Rhys,
Thank you for being such a patient boy and a good traveler.  I will admit that I was very nervous about our trip to Houston but you made it as easy as could be.  We were so thankful that the fabulous Pool family offered to let Cam stay with them Sunday night and take her to school on Monday, so she had a great time and didn't miss us too much.  We headed out Sunday afternoon and were staying in a hotel very close to the hospital since our appointment was at 8:00 Monday morning.  The Pools even took care of our hotel room with Levi's travel rewards, so we were super grateful!

We got to have a nice dinner with your Aunt Amy (in between her crazy work travels) and Uncle Mina since they have just moved to Humble.  Hopefully on a future visit we can go see their new house, but it was just too far to fight traffic for our doctor.  The next morning, we made it to our appointment right on time, and the hospital was very nice!  Texas Children's Hospital is very modern with bright colors everywhere and was really easy to navigate. The check-in process was simple and we really liked meeting Dr. Carter.  She was pleased to see that you were bigger and healthier (less of a Yoda-green color), but of course she wanted to run more tests.  The one funny note is that Daddy had taken a picture of one of your poopy diapers a few days earlier, thinking that the doctors would want to see the change in color/texture that indicates your liver is processing more bilirubin out.  (Gross, I know!)  He and I laughed so hard when he asked the doctor if she wanted to see it and she said, "Sure!"  You got lots of praise for your poop, dude.  Good thing we didn't actually put a wager on it.

You had to have blood drawn there at the hospital but because you are so little, they can only draw a certain amount per day, so we were sent home with more orders for tests.  Dr. Carter seemed to be in agreement with the measures our doctors here were taking, but still said a biopsy of your liver could only be completely ruled out if your liver enzymes drop into a low/normal range and your bilirubin gets down close to zero.  If our best estimates are correct, your antibodies will be dying off soon and most of these issues will start to correct themselves.  I was at least pleased to hear her say that the radiologists actually do liver biopsies there with ultrasound so they can be sure to hit the exact right spot and that it is a tiny needle procedure.  They do them very frequently and would be our first choice if we did have to go that route.

We headed home that afternoon and you were so exhausted that you slept almost the entire time.  We had one brief stop to feed you, and Daddy has learned that hotels make the best places for pit stops.  They usually have a very clean bathroom near the lobby with a changing station for you, plus they have really hot water near their coffee pots to warm up your bottle.  Much nicer than a gas station, plus there are comfy chairs to sit in while you eat.  Hotel employees are very understanding and it helps that you are cute.

Tuesday we had to be up early to get Cam to school so we could make it home in time for our carpet cleaning appointment.  I booked it about three months ago hoping to have it done before your arrival, but they were only available this week.  It was hilarious to see all the stuff piled up in other places so that the carpet would all be visible.  We still haven't put it all back to normal, but hey, the carpets don't smell like Joe Dog.  They did a good job and gave me a nice deal on some extras since I was holding such a sweet tiny baby in my arms.

Wednesday I had a tremendous victory in that I made it out of the house again in the morning to take Cam to school and I even managed to get a haircut that afternoon.  I have decided it is ridiculous to try and spend an hour drying and straightening my hair, so I cut off about two inches and just plan on leaving it curly for a while.  Some days I might not even have five minutes and it will just stay in a ponytail.  You don't seem very concerned about it.

Thursday we headed back to the hospital to have more blood drawn for tests.  Since we were headed back to the same hospital you stayed at, we dropped by the NICU to say hi to the nurses and just barely missed Dr. Ahmad.  He would have been proud to see what a good patient you have been to everyone. But then that meant that Friday, I was too exhausted to bother even taking Cameron to school.  We slept in a little, made it to Target before lunch and even got Cameron a little present from the dollar section since she has been such a good helper.  My brilliant afternoon plan was to go to our neighborhood park with you tied onto me with my Moby Wrap.  It is just a stretchy fabric that you wrap all around you, and it was super comfortable... until we were out in the hundred degree heat pushing your sister in a stroller.  Might think twice about doing that again!

This week was tough because Daddy had to go back to school full-time and was working 12 hour days.  With football practice after school, he was getting home around 7:30 each night, which only left one hour for Cameron to see him when she was awake.  She was really missing her daddy, and I know it was tough for her since I couldn't give her my full attention when you was awake.  It fell to me to get her to and from school each day, which meant the staff at her school saw me looking like a bag lady!  And with you on a four-hour eating schedule, not a whole lot got done.  Sometimes it can take you up to 45 minutes to finish a bottle and then I have to take care of my stuff afterwards.  I often look up after you have gone down for a nap and realize that we have to start all over again in 2 hours.  Hmmm, do I shower or do laundry or sleep?  Not much time for anything else.  Makes me really appreciate those moms that stay home and do this all the time!

And since it took me a full week to write this blog, I think I am going to maximize the time I have right now!  Still loving you with our whole hearts.

Mama

So Many Doctor's Appointments....

Rhys Man,
*Let me apologize in advance that Cameron has started calling you "Rhys Man Police Man" and now it is rubbing off on me and Daddy!

You made it to Wednesday's doctor's appointment on time at 8:00, but only because Daddy left Mommy and Cameron behind!  I dropped her off at school and met him there as fast as I could.  Of course there was tons of paperwork to fill out anyway.... We met with Dr. B, your GI doctor, and she was pleased to see that you weighed a full 7 pounds.  The lighting in our exam room was a little dark and made you look even more jaundiced, but we assured her that your color was getting better and that you seem to be doing great.  She got all caught up on our time at home and encouraged us on some easy things to try to make your feedings better.  We have now switched to Dr. Brown's bottles after using the generic ones from the hospital, our new Tommy Tippee bottles (too fast of a flow for you) and our old Avent bottles (gave you too much gas).  Hopefully you will stick with these and be happy!

We also started you on an acid reflux medicine just in case that was part of the problem.  Sometimes you would fuss and arch your back while eating, but you don't spit up a whole lot.  Now you have three different medicines that you are taking at all hours of the day.  You still eat every four hours, which makes for a long day.  For some reason, the 4:00 am feeding is the worst!  You eat well but never seem to want to go back to sleep.  I think when I do finally go back to work, I just might be a zombie until at least 10:00 or when I get some serious caffeine.

Then Thursday, we headed to the Methodist Hospital to do a swallow study based on Dr. B's recommendation.  She wanted to make sure that everything was going down the right way and to see exactly how you are eating.  It was very interesting to watch, but the appointment was a little stressful for Mommy.  Since you have eat well for the test, Mommy had to hold off on feeding you ahead of time.  We got there close to 8:00 (who makes it anywhere on time with a new baby?!?) and waited to get you registered.  Around 8:45 when all our paperwork was done, the receptionist tells me that our appointment time was listed as 11:00 in their system.  Of course, their system also had all of our address and insurance information wrong too, so I think there was a big mix-up.  I told them there was no way we were going to last until 11:00, so they found a way to work us in at 9:30.  Which meant that we sat in the waiting room for almost 90 minutes and you barely made a sound.  You were so good!

The test was pretty quick.  They put barium in your bottle which shows up black on an x-ray.  You were using two tongue movements to get one good swallow, which means that you were working too hard to get your food down.  That is why you get tired and take a long time to finish, but it also means that you start to burn calories before you even finish eating them.  We are going to get a thickener for your formula to see if it will help you take one big swallow at a time.

Then Friday, we went for your one month checkup at our regular pediatrician.  We came with an entire folder full of your discharge records from the hospital and all your recent lab results.  We were pleased to hear that your bilirubin is down to 3.9 and your liver enzymes were either holding steady or improving.  Your platelet count is completely healthy and you had even grown another 3/4 of an inch and gained 2 oz.  The doctor got all caught up on your status and said we have plenty of great doctors on your case, so we just need to come back every two weeks to have your weight checked if we haven't already done so at the GI doc.

This Monday, we head to Houston to see the liver specialist at the clinic at Texas Children's Hospital.  We are very thankful to have friends helping us with Cameron so she can stay here at go to school as usual.  We pray that it will be a short visit and that they confirm you are on the right track to everything getting 100% better.  It's your first road trip!  Hopefully the next one will be for a fun reason...

Love,
Mama

A Little Resemblance?

Rhys' Feet

Cameron's Feet

Rhys at Four Weeks Old

Cameron at Three Weeks

Our First Family Photo of 4!