Tuesday, November 25, 2014

There and Back Again.

Well, I'm a little late with the update, but a few weeks ago we made the voyage back down to San Francisco for a follow up visit for Milo. 

He was such a good baby on the way down. It's hard for such a tiny person to travel so far. 

Taking a break to play with daddy at the gas station. 

It's funny how normal seeing the red arches of the Golden Gate Bridge is for me now. I've driven under them more in the past year than I probably have in my entire life. 

Having dinner at Buon Gusto in South SF. 

Chillin' with Daddy at the hotel. 

Larkspur Landing in South San Francisco is turning into our home away from home. We actually tried a different hotel in a different part of town, but it didn't work out for us. So after a quick trip onto Booking.com and a 20 minute cruise across town we found ourselves checking in at our usual digs for the night. 

We don't usually go out and do things while we are in town since we don't want to over tire Milo (or ourselves!) and our appointments usually start at 8:30 in the morning; but this time we managed to go out for dinner, which was fun. 
I'm looking forward to the next time we go in February because we will be at the new children's hospital in Mission Bay. That's a hop skip and a jump up the 101 from our hotel instead of a 20-30 minute trek across town in rush hour traffic. *sigh* It's the little things. 

Anyway, we started our day here at the Children's Renal Center. Right away we could tell that the theme of the day was "go with the flow". Turns out that by the end of the day we didn't make a single one of our appointments on time for various reasons. The cool thing is that all of the staff people were very accommodating and the order of our appointments worked out better than we had planned it, for us and for Milo. Thank you God!

The doctor wasn't in yet for the Renal center, so we decided to take Milo to get his blood drawn at the lab. It amazes me how easy it was for the staff person to get a draw from him... We tried and failed at 2 different hospitals here at home. Mr. Chunks' arms were to chubby to find a vein!

After getting his kidney panel done at the lab, we headed over for our routine ultrasound. Milo will continue to get these every time we come. The blood work is mostly for the kidney doctor, and the  ultrasound mainly serves the urologist (though they both use all the info.)

We were an hour behind schedule by the time we got to our Urology appointment. Everyone is starting to wear out a little. Note the same ragged look on both Milo and Aaron's faces. ;^)

Our visit with Dr. Copp went well. She said that his insides look about the same as before and we talked about switching his antibiotics to something more localized. 
What basically happens at these appointments is she looks over the ultrasound images, gives us an update and things to think about for the future, then answers any questions that we might have. I really like her as a doctor. She can answer any question that we ask, and though she has strong opinions and preferences about treatment (like any specialist) she will listen to our perspective as parents and find a solution to accommodate what we feel is best for our son. 

After our visit with Urology, we circled back down to Children's Renal to try and meet up with our kidney doctor, Dr. Brakeman. I didn't get his picture, but he is also an excellent doctor. I feel so fortunate that Milo is in the care of such capable people. 

During our appointment Dr. Brakeman told us that Milo now has the diagnosis of chronic kidney disease, since his condition has been present for more than 3 months and hasn't resolved itself. He also told us that his right kidney is only 80% as large as the left one, and that his over all kidney function is at about 50%, which is a 5% improvement from the last time we came. He wants to keep evaluating him every 3 months with blood work, and he hopes to see his percentage of improvement correspond with the way the rest of his body is growing. He says that we will know more about long term prognosis and plans for treatment after Milo is a year old. 

After all of these appointments are finally finished it is almost 1:00 and we are ready to head home. Milo is so tired that he stays asleep until Willits. I'm tired too and am very happy that Aaron doesn't mind driving. While a weekend away is not a big deal any more, I still feel relieved every time we reach the redwood curtain. As we are enveloped by those timeless trees and drive the winding highway home, I feel grateful for our simple life far away from the city. There's no place like home, and after a day or so, the rest feels like a dream. 

See ya next time San Francisco. 


Monday, October 27, 2014

How to make a Gingerbread Latte

I love Fall. It's my favorite season of the year. Could be because I love being cozy from the cold. Could be because I like the  feeling of a year ending. Could be because I was born in November. Whatever the reason, today I felt like celebrating the season by making myself a Gingerbread Latte.

There it is; frothy, spicy goodness in a mug. Just looking at it makes me happy. 
And the best part (besides drinking it) was that I didn't have to hit the drive thru to get it. I was able to make and enjoy my drink at home for a fraction of the price they charge at the coffee shop. (A 12oz GBL is $3.75 at Starbucks, and I think this cost me about $1 to make at home.)

Of course, I couldn't resist the opportunity to share how to make this tasty & easy treat with everyone. So without further ado here it is. I hope you like it, and let me know in the comments if you do. Happy Fall!

Gingerbread Latte
1 tbsp Instant Coffee*
2 oz boiling water
1 tbsp molasses 
1/2 tsp vanilla
1/2 tsp powdered ginger
10 oz milk (regular or soy)

Put the milk into a pint mason jar* and microwave for 2 minutes or until hot. 

Place the coffee in a large mug and stir in the boiled water until dissolved. Stir in the molasses, vanilla and ginger until fully combined. 

Using a potholder, remove the mason jar from the microwave and screw on the lid. Shake the jar vigorously for about a minute to make the milk nice and foamy. Unscrew the jar and pour the milk into the coffee mug using a spoon to reserve the foam in the jar. Use the spoon to incorporate milk into the coffee solution, then pour the foam from the jar on top of the latte. 

Garnish with a sprinkle of nutmeg if you'd like & enjoy!

* If you are fortunate enough to have an espresso machine or a frother, definitely use those for the job! However, I have found that I enjoy this drink just as much with this basic method of preparation :)

Additional tip: This recipe makes for a lovely, mild gingerbread flavor. But if you like your gingerbread stronger and spicier, try using 1 1/2 tbsp molasses and 3/4 tsp ginger instead.


Saturday, October 11, 2014

My week in photos- October 2014

I had the thought that it would be fun to periodically post a weeks worth of pictures from my phone. It will be fun to look at these little collections as time goes on. 

This week we had lots of inside time since my kids were sick for half the week. Didn't slow them down any!

Sunday: Playing with squash & gourds from the store. The kids are having their own little harvest party. 

Monday: Sleepy Mr. Milo, daddy getting the kids ready to go for a walk on our family day. 

Tuesday: unexpected kitchen helpers

Wednesday: Milo actually napped in the bouncer for the first time in weeks. Happy mommy did the dishes!

Thursday: Elliot with his "Bubba" hat. 

Friday: Norah stumbled out from nap time half awake with a blanket on her head. Poor sick girl. 

Saturday: This is a snapshot of my life ;)


Wednesday, September 24, 2014

Creative fun with a cardboard box.

"Mogocyco loooud!" Shouts my son as he sits in the kitchen astride a Dole bananas box that we scored at Costco a few months back. Looking over to check in with Mr. Cuteness I ask "What are you doing Elliot?" In his less-than-two-years baby speak with a big grin on his face he proceeds to tell me that he is going on a ride with his uncle and he is riding on the back of the bike. 

Two minutes later I find his sister on the floor in her banana box (for something so cool we have to have 2), and when I ask her what's happening she says "I'm fixing a lightbulb in my house."

What else have these boxes been this week? A dining table...

A truck...

...and of course (Mommy's favorite), a step ladder to grab all kinds of "goodies" off the counter. 

I also saw them used as a stage, a drum, a refrigerator, a horse, a bicycle, and a helmet, and those were just the play ideas that I understood. 

It's so funny to me how some simple cardboard boxes are some of the best toys that we have in the house. My kids love to use their imaginations, and a blank box holds the kind of potential for them that an artist sees on a white canvas or a writer sees in blank page. Of course for little children it's not a conscious thought, they just love to create and be themselves. That's an admirable quality, and a mental space that I wish I was in more often myself. Maybe I should get myself a cardboard box too ;).


Monday, September 15, 2014


Oh mommy, forget the pony... Can we have one of these??

Uncle Scott is now the coolest person on the planet for the week. :)


Monday, September 8, 2014

Enjoying Today.

"Noooo!" I hear my son shriek from behind me, in chorus with a tersely uttered "These are MINE!" from his older sister.

I turn to the scene of two toddlers frantically grabbing handfuls of the two dozen animal cookies that I've set out on the counter for them to share. These two are stuffing penguins and bunnies into their cheeks as fast (or faster) than they can chew, just to spite each other; obviously more concerned with keeping the food to themselves than with actually eating the snack. 

After some frustrated mommy coaching about sharing, I remind them that it's important to slow down while eating since they won't be able to enjoy their cookies while being worried about getting the next bite. The kids eyeball me in their usual "Sure... ok Mom" fashion. I give them each two more cookies and they scamper off to harass their dad for a reading of one of their favorite books. 

Five minutes later finds them cuddled on each side of my husband on the couch reading "We're Going On A Bear Hunt". I peek around the corner from the kitchen and can't help but grin at the sweet little story huddle that's happening in my front room. We have been reading that same book for two years running and they love it every time. Looking at my kids sitting together I am suddenly imagining them as 5 & 4 years old instead of 2 & 1. Will they still love to cuddle with their favorite book, or will this moment be one of those that finds itself extinct and faded into history before we as parents realize what has happened?

For a few minutes my thoughts run this rabbit trail, as they often do, until I suddenly realize something. That little lecture I just gave my kids about enjoying their snack has an application for me as well. I may not have an issue with enjoying my cookies, but enjoying my life in the moment without worrying about what's coming next is another story. 

It is tough to be satisfied with where you are in life. I know that I often find myself caught up in what I don't have or dreaming about the future life I'd love to be living (take one look at my Pinterest account and you'll know it's true). Not that dreaming about the future is bad or desiring things is wrong in itself, it just depends on the precedence I give these things in my heart. I often find that the more time I spend thinking about the future, the less I am able to truly enjoy what I have today. 

So what's a mama to do? We all want to enjoy our daily lives. Something that helps me keep from worrying about the next bite of my proverbial cookie is practicing thankfulness. 

A long time ago a wise friend of mine told me that to combat bitterness and discontent in her life she journaled every night and wrote down three things from her day that she was thankful to God for. She said that it transformed her as a person and gave her a powerful perspective on life. I myself am a horrible journal keeper, but I do thank God every day for the small and important things in my life, like story time with my kids, a kiss from my husband, or 30 minutes of down time while I drink my coffee in the morning. Being continuously grateful allows for me to enjoy the life that I have to the fullest, no matter what my circumstances may be. It's when I shift my focus to what's "missing" that I feel my joy slipping away. It is so important to me to love the life God has given me because like John Piper says "God is most glorified in us when we are most satisfied in Him."

There is a lot of freedom that comes with living for today. When I feel thankful, I find that I am less concerned about what will happen with my kids and more able to enjoy them for who they are and what they do right now. I think that the more I embrace this approach to life, the more that kind of freedom will grow. It's a freedom that my husband and I pray daily for, because it is a daily need for us and for our kids too. I hope that as time goes on that I will find that a thankful heart is the core of who I am rather than something I periodically struggle with, because when that happens, I will be having my cookies and eating them too. 


Thursday, August 21, 2014

Milo's 6 Week Follow-Up

Well, we did a lot of driving this past weekend. Milo had his 6 week follow-up appointments scheduled at UCSF, so we went down on Sunday and came back on Monday.

I just need to say what an incredibly good baby he is! He slept the whole way down & only woke up 3 times to eat. The last time he woke up was right before crossing the Golden Gate. Talk about timing! We wouldn't have been able to easily pull over until we were out of the city. You should have seen Aaron pulling a Super Dad move & last minute crossing 3 lanes of rush hour traffic to get to the vista point parking lot, lol :). 

We slept pretty well in the hotel, which was good, because our appointments started at 8 am on Monday morning. 

I was happy to have all of our appointments in the same building this time around. All we had to do was hop in the elevator :). 
Our first appointment was with the kidney doctor who was tied up at the hospital, so we went up to our ultrasound appointment at Radiology instead. 

Milo was wide awake and playing with daddy in the waiting room. 

I'm glad he was having fun before the appointment because the actual ultrasound didn't make him very happy. He was a trooper though, and got through it just fine. The tech checked his kidneys and urinary system, then checked out his hips since our pediatrician at home felt "clicks" when he checked at our 2 week appointment. 

Immediately afterward we went upstairs to our Urology appointment to hear about the results from the ultrasound. 

Dr. Copp showed us a comparison of the ultrasound we just had and the last ultrasound from when he was born. Everything looks about the same, the swelling is still there, except that his ureters do look a bit less swollen, so that is good news. His abdomen is large, but not abnormally so. She said that 50% of Hydronephrosis cases in boys will resolve themselves by 1 year of age. When I asked her about surgery she said that it wouldn't likely be needed unless he has reoccurring infections. So the plan for now is to keep him on antibiotics for a year to prevent infection and then reassess things at that time. In the mean time we will be seeing her every 3 months for ultrasounds and monitoring his growth. 

After that appointment we scooted back down stairs to try and catch the kidney doctor before he went to lunch. After much oogling out the window at Karl the Fog who was busy eating the Sunset district for snack, they squeezed us in to see Dr. Brakeman. 

His news for us was that based on the last blood tests for Milo, his kidney function is about at 45%. The ultrasounds showed that they were swollen and that the outer layer of the kidneys is thin. So basically things don't look great, but they haven't gotten worse. He ordered more blood work to be done to monitor if his functioning has changed in the last few weeks. He said even though things aren't great, they are still ok because he is growing so well. 

So all that to say that Milo is doing fine. We have to keep monitoring him, but he is a strong little man, praise God. We will be going back to SF in November to check up on him again, so hopefully we will have news of improvement to share with everyone then. 


Saturday, August 16, 2014

Has it already been more than a month??

Wow, time is flying by. My mom says that the more kids you have, the faster it seems to go, and I'm inclined to believe it's true!

I started to write an update when we first got back home, but after a week I realized that the things I had written about were not truly the things that I wanted to share with everyone, so I decided to wait to update later to give a better picture of how things are going for us. 

Our short time as a family of five has been very good and full and sometimes hard so far. We have been blessed to be able to ease into our new life slowly. Since Aaron is self employed and is able to set his own schedule, he has been spending mornings at home with us, and for the first few weeks his mom came to help me in the afternoons, which was wonderful. 

As for me, I have been relatively slow to mend from this pregnancy. Though I am fine now, it took me some time to recover mentally and physically from the birth experience (which is a story that could be a post unto itself!). This combined with the expected lack of sleep and acclimation to having three kids has made me very grateful for all of the help I have been getting!! :)

Being mom to 3 under 3 is going to be one of those unforgettable experiences in my life. What a beautiful and difficult thing it is. Every day is peppered with trials and triumphs alike as I attempt to meet the physical, mental and emotional needs of three tiny people. All things considered, we are doing pretty well, even though we all have our moments. 

Milo is doing great! He had a bit of a dip in his weight at first and there were some concerns raised about jaundice during his first week, but since then he has been fine. He is growing steadily, is very strong, and is very tuned in to everyone around him... he reminds me a lot of Norah at this age. Not to mention, he is super cute (I'm not biased at all ;^D).

We are continuing to get care for him in San Francisco. His next appointments are on Monday with the Children's Renal Center, Radiology, and Pediatric Urology. 
That's quite the mouthful now that I've said it!

Through these appointments we will get a better idea of his current level of kidney function and take a look at what a long term plan for care will look like for mister man. We are hoping that his kidneys will be working fine, that they will be less swollen, and that surgery will not be needed. 

We are so thankful to everyone who has been praying for us and for those of you who have graciously given us financial support. I can't begin to put to words how grateful I have been for all the people who have helped bear our physical and spiritual burdens. You guys are amazing. Every day I see this little baby boy, blessed by God to be alive, and can't help but think of what a part of that miracle has had to do with everyone's petitioning The Lord on our behalf. Thank you to you all. 

I will try to keep posting updates as I can manage. I have very busy with making our basic needs happen at home, but writing on here is important to me as well. It helps me keep in touch with everyone and also helps me to process out loud all that is going on here at home.  It's a win for everyone :)


Thursday, July 3, 2014

How Milo came & what followed.

Hi everyone, sorry that it has been so long since I've updated here. The last few days have been completely crazy for us, and a lot of it feels like a blur to me. 
I am going to cover a lot of ground quickly since so much has happened for us since I last updated on Tuesday. 

So, the plan had been to induce labor on Thursday, since that is when Mr. Man would have been full term, but Monday morning when I got up for the day I was not doing well at all. My blood pressure was very high, my sense of balance was all but gone, I was having pain in my chest, and I was altogether not doing well. I felt like a red warning light was flashing on my insides. Something was really wrong and I started to panic a bit. 

Fortunately, the resident MD who had been seeing me everyday for a week acknowledged the drastic change in my otherwise calm demeanor and noted that since my symptoms were getting worse that it would probably be wise to move my induction up to Tuesday. 

That night they started me back on a magnesium sulfate drip, antibiotics, and on a medicine to soften my cervix. In the morning they used a foley bulb to open everything up and see if labor would take off on it's own... but it didn't (surprise, surprise). Hey, at least Aaron & I got in a few good games of Scrabble ;)

My body continued to stay in the holding pattern it had been in since I arrived in SF, so in the afternoon they started me on a drip of pitocin. The nurse we had was wonderful & very capable, and she made the whole process seem really close to how my other normal labors have progressed. By 6:00, they could tell that labor was happening full tilt and they stopped the pitocin drip. By 7:00, it was time to catch a baby. My otherwise quiet delivery room exploded with at least a dozen doctors and nurses, and @ 7:33 with just 3 or 4 pushes Milo Beckham Souza arrived on the scene. 

It was nice to have some time to get to know him and enjoy him that night. He is a very sweet, mellow baby with a great attitude. He sleeps a lot more than Norah & Elliot did at this age, and man does he love to eat! He is really good at it too, which is an added bonus. 

We got to sleep pretty late that night, and I didn't sleep much, as tends to happen with a hungry newborn. First thing in the morning the nursery staff came to get Milo to start his tests. I was so exhausted that I had to stay behind and rest for a few hours while Aaron went along with him. 

The ultrasound that the urologist ordered showed that Milo's kidneys were just as swollen as they had appeared in utero, so they went ahead and ordered another test which involved catheterizing him and taking an X-ray of what happens when he voids urine. I also had to stay behind in my room while this test was being done since I was feeling a bit woozy when I tried to stand. I was very grateful to have Aaron there taking care of the baby. 

In the afternoon I was feeling slightly better and I needed to feed Milo, so I had Aaron wheel me (& my IV) down to the Intensive Care Nursery where they were keeping him until they heard what the results from his test were. 

Coming here was a bit overwhelming for me. I had no idea how many emotions I would feel entering this room of tiny sick children who were fighting for their lives.  I was blown away & slightly terrified at all that I saw. I was flooded with feelings of devastation for the babies, hope & respect for the parents, and also extreme gratitude that my baby was the healthiest one in the room. 

The rest of my afternoon was a constant run back and forth between the ICN to feed the baby and my hospital room since the nurse had to check on me & my bag of "Mag" every 2 hours. 

By the end of the afternoon we still hadn't heard from Urology and they needed the ICN bed for a higher needs baby. They decided to transfer Milo to the  High Observation Nursery since he still had a catheter in and the plan of action wasn't clear. 

Around dinner time we finally got a visit from the Urologist. He brought us good news! Milo doesn't have the Posterior Uretheral Valves that they originally thought he had. They think that he has a reflux issue (VUR), and so that means that he doesn't need surgery for the time being. He doesn't seem to have an issue peeing, so the catheter was ok to be removed. He does, however, have what they consider to be Grade 5 Hydronephrosis (swollen kidneys), so they will need to continue to monitor him over time and we will need to see a Nephrologist as well. 

Since no further observation was needed, we began trying to get Milo back in a room with me. It took forever to get him released from the nursery because of some beaurocratic issues, but finally we got him back. This was great, and so was the fact that they were taking me off the Mag drip that evening. Since everything felt like it was going well, Aaron left for Modesto with the plan that he would come with the kids and pick me up to go home Friday, after my 48 hours in the hospital was done.

Well, it was a good plan anyways. 

Shock of my week happened the next morning when the doctor came by to do her rounds. She asked me all of the normal questions that she had been through out the week. Then she told me that they would be discharging me that morning since they had no medical grounds for keeping me. I asked her why, since it hadn't been 48 hours yet, and she let me know that they counted days by midnights, so they counted Tuesday as my first postpartum day, even though Milo came at 7:30 pm. 

This started a whole chaotic morning of trying to communicate with doctors, social workers, nursery staff, and my husband. By the middle of the morning I called Aaron and told him to just come and get me and take me back to his dad's house since things weren't looking promising at the hospital. The nursery finally decided to discharge Milo too on the condition that I take him to the doctor at home on Saturday morning for follow up. 
At 2 pm, for the first time in 2 weeks, I was a free woman. 

After 4 hours of the worst traffic ever I found myself in Modesto being greeted by my family who were anxiously awaiting the arrival of Mommy & the new baby. 

The next morning, thanks again to my amazing husband, we were all packed in the car for what turned out to be a 10 hour drive back home (note to self... combo of breast feeding newborn and potty training toddler not a recommend for timely travel).

So now we are finally home. We are all trying hard to recoup from all that the last 2 weeks has brought to us, but we are very grateful to all be together again with the addition of sweet baby Milo... the prize for all our struggles.