Saturday, May 9, 2009

answers, part 2

Katie - HELLO! Of course Superman would win. He had super powers. Batman was just a rich boy with cool toys. Superman would open up a can of woop-butt on Batman. But Matt says to tell you that they would never fight anyway. After all, they are both in the Justice League. (And he says to say, "What if the Batmobile was made of Kryptonite?")


Question 1: What is a normal day like for us?
I'm not sure we have any concept of "normal" or "consistent" around here. Every day is different, but always very, very busy. I usually get up between 7:30 and 8:00 (after being up with him for an hour and a half around 3 or 4) with Jonah, and give him his first bottle of the day. (Feeding Jonah takes an hour - this can include preparing his bottle, drawing up his meds, one to two diaper changes, rebandaging (if he pees or poops on his leg dressings), saline drops, picking the boogies out of his nose so he can breathe to eat, burping, and oh yeah, feeding him his bottle. It's quite the ordeal, and those visions you may have of sweet, calm bonding time that is quiet and peaceful... er, um, not at our house). So anyway, that takes a while. Then I usually rock him back to sleep, put him in his chair or swing and check my blogs and email. Then I take a shower and pump. By that time, it's time for Jonah to eat again or he's spit up everywhere or peed out of his diaper or puked all over his chest and arm bandages. There's also LOTS of laundry to do, washing of bottles and syringes, and other household chores. I'm also working on finding addresses and addressing envelopes to send out birth announcements. I'm so behind. (Don't even get me started on thank you notes. I wouldn't advise holding your breath.) No day is ever the same, but lately I've been trying to get out at least once every other day, just so I don't go nuts. And usually, you guessed it, I go to Target. Man, that doesn't sound like as much as it is, but it is. (Note: I do usually have daily help who do many of the above things - I usually do all the diaper changing and bandaging.)


That leads me to...
Question 2: What's a diaper change like for us?
We have found that FuzziBunz work best for Jonah's skin while still keeping the pee and poop in (for the most part). We get a diaper, slather Aquaphor all over the elastic, and when he has breakdown on his bottom (like now), we take a vaseline gauze, fold it in half, aquaphor both sides, cover the side that will be touching him in Polysporin, put it on his bottom, put the diaper on, slather his legs all the way around with Aquaphor and snap the diaper. Voila! (Unless he's leaked out of his diaper onto his bandages in which case we have to rewrap at least the tops of his legs). All of this Aquaphor on his diapers makes them lose their absorbency after a while, so today I "stripped" them, washing them using Dawn dish detergent, vinegar in the rinse cycle, and then rewashed them using Dreft. I have only 15 FuzziBunz, and Jonah potties A LOT, so we have to wash diapers often.


Question 3: Now that I'm a stay-at-home mom, do I find myself with free time and if so, what new hobbies have I picked up?
I definitely have less free time than I used to. Blogging is the only "hobby" I get to do, and even this doesn't get done sometimes until late late. (Like tonight.) My only free time is basically from 10:00pm to midnight. I used to read and scrapbook. I like going to the beach and camping. If I ever get more free time, I hope to be able to continue my Admin job for Young Life from home.


And last question for now:
What are our chances of having another child with EB? How will this affect our decision to have more kids? Would we consider in vitro/adoption?
This question is hard to answer. Not because I don't have opinions or Matt and I haven't talked about it, but just because I know our plans aren't necessarily God's plans, and it's hard to put something like that into writing when you know in six months, you could have changed your mind (or God could have changed it for you). We have a 25% chance of having another kid with EB. But Gabe had it too, so we consider that 100%. At this point, all we know for sure is that all of our time and focus is on Jonah, and I don't think we'd consider more kids for two to three years. However, it makes me very sad to think that this was my last pregnancy, and I know we both would like more kids. Matt and I have talked, and I think, at this point, we are both leaning toward adoption. Right now we feel like we wouldn't want to spend all that money on in vitro when it might not work, and when there are already plenty of kids who need loving families. I feel God calling us to this option. As far as "donation of product," we are SURE that if it's not a baby that is a combination of the two of us, we are not interested. (Except adoption, of course). But like I said, God could have a different plan, and if He surprises us with an unplanned pregnancy, we'll be thankful, prayerful, and will love, care for, and glorify God for whatever child He may give us.


Okay, off to bed. Matt and I are going to attempt church tomorrow for the first time since before Jonah was born. We'll go for at least Sunday school and then see how it goes. We were going to try it the last couple weeks, but his face was so bad, I was worried about germs with so many open, unbandaged wounds. Please pray for a good night for Jonah and a successful attempt tomorrow. I'm so excited and completely anxious at the same time. I know Church is about God and not about me, but man, I'm pumped for me. I know I have suffered spiritually because of all we've been through along with missing our weekly rejuvenation time of praising God along with our family. I can't wait. Please also pray that God will protect Jonah from infection. It will be the first time we are taking him somewhere where people will be in such close quarters, and I'm a little concerned about germs. Thanks for continuing to pray for our family. We appreciate it so, so much.

Oh, and Katherine, I ALWAYS have spacing issues with blogger when I post pictures. Drives. Me. NUTS.

44 comments:

Jolene said...

Happy Mother's Day!

two red heads and two brunettes said...

I hope you have a wonderful Mother's Day at church tomorrow.

teacheroftwos said...

I don't know if you are still taking questions, but I have one that I hope you will answer. Did Gabe have Eb for sure, like was he tested or is that just what the doctors or you think he had? If this is too hard of a question to answer I understand.

Anonymous said...

A beautiful message.
You fill my heart,while breaking it at the same time. You are so blessed to have your FAITH as well as a family that shares it with you.
Have a wonderful mother's day.
as always Prayers for the Williams Family.
2shoes

Kirsten: said...

Thanks for answering so many questions that I have wondered to myself. I hope you have a FANTASTIC mother's day!!!

Our family page said...

I will pray that your mother's day is just perfect and you have a wonderful day at church! You are precious! Love from Mexico, Missy

Jennifer Beaty (Thompson) said...

It was so heartwarming to read of your thoughts about adopting. Thank you, thank you for considering that option (although I know it's probably a weee bit early). =)

You are doing such a great job caring for Jonah. And I know, I'm not there so how can I say that, but your warmth and love fairly oozes out of each post. I can't imagine how tough it is, but you have each other and GOD and He will see you through the good days and the bad.

Go Williams Family!!!

Erin said...

I hope you have a wonderful Mother's Day, Patrice! Praying that things at church go well and that you have a smooth morning.

Love and prayers,
Erin in va

p.s. my students were asking on Thursday if baby Jonah liked their cards...they were so excited to draw for him and asked what his favorite color was, favorite toy, music, etc., etc. It was too funny!

Laura A said...

Happy Mother's Day, Patrice!!

Love,
TX Laura

as written by Barbara said...

Happy Mother's Day, Patrice! Praying for you, Matt, & Jonah to have a chance to worship with your church family tomorrow.
Blessings,
Barbara Lyman :o
Marysville, WA

In Due Time said...

I just wanted to wish you a Happy Mother's Day. I check in on you and Jonah every day.

I saw the show on TLC about Johnny Kennedy and he touched my heart. I wish you (or anyone else) didn't have to go through this, but you and Matt are wonderful parents.

Happy Mother's Day

Kimmie said...

Happy Mother's Day! I hope you guys have a great time at church! ~Kimberly (Randolph) Waller

Claire said...

Oh I hope church goes well! Happy Mother's Day!

Cxx

Lisa Worthington said...

Wishing you a very happy Mother's Day, Patrice, as the beautiful Mom of two miraculous boys.

Ray said...

Happy Mothers Day!

Katie said...
This comment has been removed by the author.
Katie said...

True they are part of the Justice League, but really that only means so much... Batman is kidnapped and subjected to mind control, whereby he is conditioned to believe that Superman is his sworn enemy. It could happen. You have to consider the possibilities. And Matt... awesome call on the Batmobile of kryptonite. That's the creative thinking I'm looking for!

Now I'm going to go unpack more boxes. Where does all this stuff come from?!

Happy Mother's Day!

P.S. - I deleted the first version of this because of a grammar mistake that was bugging me. Please don't tell me if you find another one. And I'm NOT compulsive.

Joy said...

Happy Mother's Day Patrice!

Sunny said...

Email me Jonah's size. (I am guessing he's in small Fuzzi Bunz) and I will send you some more new ones.

Sunny@cutietooties.com

also--have you tried knickernappies? you might like them as the leg casing is softer but it still has fleece inside. would you be open to a diaper care package?

dragonflyz in June said...

Happy Mothers' Day! ٩(●̮̮̃•̃)۶ I hope your day is wonderful.
How did you find out that Gabe had EB as well??

momma said...

happy mother's day!

i hope you were able to make it to church!!

Anonymous said...

Happy Mother's Day!

Mike and Molly Spivey said...

Happy Mothers Day!

You had talked about adoption, etc.. We had some friends that did In Vitro ADOPTION! Yes, they actually adopted children using the method of IVF. A family had about 6 embryos that they weren't going to "use". Instead of those lives being frozen, etc, this family adopted them. I think they put in 5 or 6, and she got pregnant with 3. So, she was pregnant and carried triplets, but they were adopted. Neat, huh?

Susan said...

Happy Mother's Day to a precious mom. We don't know each other, but I pray for Jonah and your famiy daily. I have Jonah's button on my blog and know my friends are praying too.

God bless you all.
Susan in South Carolina

Sashka said...

I could put on my geek glasses (oh wait, I always wear those because I need them to see...) and go on about Batman and Superman because my husband is a comic book artist, but I won't subject anyone to that. ;) I just wanted to say Happy Mother's Day to you. I hope it's a good one!

Kelli said...

Happy Mother's Day!! Hope you made it to church.

Teri said...

Happy Mother's Day!

Whenever I give a friend a baby gift, I always tell them not to send me a thank you card. The few spare minutes that you might have do not need to be spent writing a card. Your friends know that you are grateful for their gifts, your time needs to be spent with Jonah and your handsome hubby. Take that off of your to do list.

I know that etiquette says you have to, but this shouldn't be a stess nor an obligation. A thank you should come from the ehart and if you "have" to do it, that's not where it comes from. You get a pass on this obligation

Rebekah said...

Happy mothers day! You are a beautiful inspiration, and it's a joy to read your blog.

Anonymous said...

I know you don't know me but I did see you in the parking lot at church today. It really made me smile to know that you were able to go on Jonah's first Mother's Day with you. Here's to many more Sunday's at church.

Anonymous said...

Do you pump and feed jonah from a bottle because of his eb? or is it just easier to feed him that way

nancygrayce said...

Happy Mother's day! You are just the greatest mother and Matt the dad! I only know a teeny bit about EB from my DIL, but I know you have a hard road! I'm thankful you have a merciful loving God who knows just how to help you!

Nora Lee said...

Happy Mother's Day Patrice!
Hope everything worked out with getting to church this morning :)

Anonymous said...

I hope you had a wonderful Mother's Day!

jandkland said...

I hope you were able to go to church and have a special Mother's Day with your family. You are an inspiration to us all, even though you don't feel like it.

--Kelley in GA (queenkelley.com)

Joanne said...

Happy Mother's Day to a wonderful mother!

I know this is a few steps ahead of where you are, but my husband and I are looking into adoption, and embryo adoption is a wonderful way to give life to a child "waiting to be born."

Continuing to keep you and your family in my prayers.

Anonymous said...

Hope your Mother's Day was wonderful!!

brightleigh said...

Happy Mother's Day! ((HUGS))

Anonymous said...

Care for some unrequested diaper advice? It's possible that the Dreft may be making Jonah's hiney worse - it's got enzymes and brighteners that can aggravate sensitive skin. Try switching detergents and see if there's any improvement (if anything, it'll give you an excuse to go to Target ;). Diaper Jungle has a good chart of what works and doesn't work for diapers.

http://www.diaperjungle.com/detergent-chart.html

Amie said...

First off..Happy Mother's Day!!

Next I wanted to tell you that washing the cloth diapers in Dreft will add to them being less absorbant. I had good luck with Allen's Naturally when my daughter was an itty bitty and as she got older I switched to regular Tide. Some people have problems with Tide causing the diapers to be less absorbant but many do not. I am not sure if Tide is an option due to Jonah's skin but Allen's Naturally is awesome for very sensitive skin. It is pricey but you use such a small amount for washing the diapers it actually ends up evening out.

Sashka said...

I'll agree with the others about the Dreft. I use Fuzzibunz as well, and I've had good luck with Purex Free&Clear. The less "extra" stuff in you detergent, the better.

And to the person who asked if you pump because it's easier... no. No it is not. *lol* I actually want to commend you for keeping it up, because it is so much extra work. You're doing an awesome job, Patrice.

Lindsey said...

Another good detergent is Country Save. I get mine from Amazon, and since I am a suscriber and get it every 6 months I get an extra 15%off. I just finished my first box that I started to use in January. I only need to use 1 tablespoon. Too much detergent can cause bottom issues as well. I hope this helps and doesn't seem too pushy!

Anonymous said...

i also was concerned about you using dreft to wash the cloth diapers. i use fuzzi bunz exclusively and wash only with charlie's soap. if you go on fuzzibunzonline.com and look at their FAQs, they only recommend 3 detergents to use for fuzzi bunz. even dreft has too many chemicals that are not sensitive enough for cloth diapers.

all that said, i think you are an amazing mom!

Nancy said...

What you said....

"Matt and I have talked, and I think, at this point, we are both leaning toward adoption. Right now we feel like we wouldn't want to spend all that money on in vitro when it might not work, and when there are already plenty of kids who need loving families. I feel God calling us to this option. As far as "donation of product," we are SURE that if it's not a baby that is a combination of the two of us, we are not interested. (Except adoption, of course)."

...That's exactly how Dave & I felt. We adopted our beautiful son, Noah. Adoption is a wonderful experience & Noah has brought so much joy to our lives after so much pain.

Addie said...

Try All Free and Clear!