Summer Catch-Up

I have so many things I want to blog about from our summer.  But sadly, our iMac crashed last week, taking our hard drive and our pictures with it.  We believe we will be able to restore the lost data (please, Lord) for about the price of a small car.  I would sell an organ, though, to get the last 18-months of pictures back. 

Side note:  don't procrastinate on backing up your data...even if you believe you have an unbreakable Mac.

Here are some bullet points that I want to touch on from the past few months.

-  Our summer started off slow, as we were done with school around May 23rd and the weather had not yet consistently warmed up.

-  I started a job at the end of June.  I work for my dad's magazine publishing company, from home, as much or little as I want.  It's a pretty great arrangement.

-  I started training for a half-marathon, that I will be running in October.  Brian is doing it too - yay!

-  We had three amazing camping trips with friends.

-  Emma, Isaiah and Noah took swimming lessons and did so great.  I was completely amazed at their progress over four weeks.

-  Braxton started wearing Thera Togs.  It's therapy grade compression clothing that helps stimulate his muscles and helps him work on controlling his movements. 

-  Braxton finally cut his first tooth at the end of August - a top molar!  He has since cut another molar, and just this morning, his lower front tooth.

We finally started the new school year late last week, and are still getting used to our new schedule.  We have some new activities I am super excited about, like horseback riding and violin lessons. 

I can't wait to get my computer and all my pictures back so I can get back to some regular blogging. 

Happy Fall!

Cowboy Troy

Y'all remember Troy, from Season One of The Apprentice?  The country boy from Idaho who made it as one of the finalists, and who Donald Trump famously offered to pay for his tuition to any college?

Well, he was the emcee at our local World Down Syndrome Day event.  His sister has Down syndrome, so he is heavily involved in the Down syndrome community.

Now, I am not one to go out of my way to meet a "celebrity".  But this was a pretty intimate family-oriented gathering, so I thought it would be fun to go up to him and meet him.  And of course I drug the whole family with me.


Please note how excited Isaiah and Noah are to be in the presence of a celebrity.

Troy was asking Noah questions about himself.  This was right after Noah told him that Isaiah may be taller, but he can run faster.

It was fun meeting Troy, and asking him questions about his experience on The Apprentice.  In case you're wondering, yes, he's still good friends with Kwame, and no, he never took Donald up on the college offer.  But more importantly, it was fun seeing Troy making a difference in the lives of others.

3-21

3 copies of the 21st chromosome.  Today is World Down Syndrome Awareness Day.

What a great opportunity to take a few minutes and learn something new about Down syndrome, or hang out with someone you know who has Down syndrome, or even donate some of your time or money to an organization that supports Down syndrome.

Tonight we are excited to go to an event that is being hosted by our local Down syndrome association.  As we have slowly started integrating ourselves into the Down syndrome community, we have been so blessed by the wonderful connections and relationships that have been forming.  I can truly say that I am looking forward to this event, and that I look forward to the friendships we will continue to make.  I have come a long way from where I was last summer.

I leave you today with an essay that Emma wrote yesterday, in honor of this day.  And also a little sneak peek from the photo shoot Braxton was a part of for a calendar that will be sold for next year.

Braxton is different than other babies, because he has Down syndrome.  He doesn't grow very fast.  It is kind of neat that he has Down syndrome, because I like that he doesn't grow very fast.  Sometimes I wish that he could learn new things, but then I remember that he has learned a lot of things.  I want to help him learn things.

You can't tell that someone has Down syndrome by looking at them, because all people look different.

I want people to be nice to Braxton and not be mean to him.  I wish that I can always be around to help him.

Some people have 46 chromosomes, and some have 47.  I don't think it's good or bad, because all people are different.

Emma, age 8

photo credit

Reflection

This little Lambie-Lump-of-Love is turning One in a week.  Can you believe that?  ONE!  I've been catching myself having feelings of nostalgia lately, as I get little memories and feelings that I had this time last year.  I was very pregnant.  Although technically not due for another four weeks.  I was busy thinking about labor plans and childcare and cleaning the house and trying to come up with baby names.

On March 21st, I stumbled upon this blog post.  I had only been to that blog one other time, months before.  Yet somehow I ended up there on World Down Syndrome day....five days before I gave birth to my own precious child with Down syndrome.  It was one of the many little ways God had been preparing my heart all along.

And now, almost a year later, it is amazing how much things have changed.  Things I never, ever, would have imagined.  I am an expert at rattling off a list of diagnosis to various health providers.  I am on first-name basis with many therapists in the valley.  And I now have a degree in medical billing.  But most importantly, I have been opened up to a world of acceptance.  Of love without limits.  And of huge, huge blessing.

Yet at the same time, things are exactly the same.  I am a Mama, and have five wonderful children.  I have a sweet, sweet baby, who nurses and coos and laughs, just as he should.  I see my children for who they are, and not where they were born, what color skin they have, or how many chromosomes they have.  They are all equal, and special, in their own way.

I have learned so much about life through my children this past year.  Like how when I tried to explain to Emma that Braxton will look different as he grows up, and her response was, "Mama, all people look different".  And how, to this day, she still wouldn't be able to single out a person with Down syndrome from a group of people.

Total, blind, acceptance.

I have a lot to learn.  And I am so, so thankful that I am finally learning even just a tiny bit.  My life is so much fuller.  So much richer.  And I can't wait to see where it leads!

This was Braxton at 11 months.

He loves his Daddy.  Forget trying to nurse him when Daddy's in the room - he will crane his head any direction to see what Daddy is doing or has to say.

Braxton has made noticeable strides lately in his development.  He is playing with his mouth more, reaching for things more, and twisting around all over the place.  He had a bit of a rough start, but since his surgery he is making up for it.

Now, excuse me, as I go get my Love Muffin up from his nap.

Weekend Recap

I realize a lot of my posts have focused around Braxton lately.  Well, the little sweetheart just happens to have a lot going on. :)

Saturday was the Buddy Walk in Boise.  This was our first time ever participating, and of course our first time ever having a team. 

I want to give a HUGE shout out to all our friends and family who supported us either by walking with us, or donating to our team, or both!  Thank you, from the bottom of our hearts!

 Talk about an awesome back-drop for the event!  It was a beautiful (but cold) day!

Sunday was Braxton's dedication at church.  Our Pastor also spent time praying for tomorrow's surgery and healing for Braxton's body.  It was a special time for us, and we were again blessed to have friends and family there to support us. 

Tomorrow is surgery day.  I will be posting updates from the hospital over the next few days.  Please keep Braxton in your prayers.

Love Like Never Before

Braxton is on my mind a lot lately.  I know, it's not unusual for someone to have their baby on their mind often.  But I've been finding myself lingering on thoughts about Braxton.  I've slowed down lately, if you will, and just stared at him while he sleeps.  Pressed my cheek against his a little longer.  Sat on the floor with him a little more often.

A week from today is Braxton's colon surgery.  It's a pretty big deal.  The diseased part of his colon is going to be removed, and the good parts will be sewn together.  His colostomy will be reversed.  The actual surgery is expected to take about five hours.  Then, as Braxton begins to heal, his colon will begin working, and we will eventually end up with poopy diapers.  I will never be so happy to see a poopy diaper.

But oh, how I am dreading next Tuesday.  I have had the experience of having children in surgery before, and I don't think it gets any easier the more you do it.  Honestly I think this time might be the worst as I have had the longest time to think about it.  It's also the most major surgery any of my kids have ever had.

On Sunday we will have the privilege of dedicating Braxton at church.  We will go up on stage and our pastor will pray a blessing over Braxton and we will publicly declare our commitment to raise Braxton up for the Lord.

When I pause and spend a moment thinking about Braxton I immediately become overwhelmed by the goodness of God.  I didn't ask for another baby.  I wasn't trying to get pregnant.  Yet here I have this precious, precious baby who is nothing less than a blessing from God.  Oh how much my God loves me to give me this gift.  I am so undeserving.  And so grateful.

I am a Mom, so I know what it means to have your heart live outside your chest.  Yet there is something even more profound, more indescribable, about the love in my heart I have for Braxton.  At the same time, that love overflows to my other children as well.  And I think that my love for my other children trickles down and puddles up around Braxton.  Honestly the more children I have, the more love I have for my children.  I've heard people who worry that they won't have enough love for a second baby, because they've already given the love they have to their first child.  I say that being a Mom equips you to have that extra love for another child.  The more experience you've had loving a child gives you that much more love for the next one.  It kind of makes me want to have a few more children just to see.

As I struggle to find the words to explain my love, my mind is also thinking about Down syndrome and trying to make sense of how I feel about that.

This might surprise some of you.  But I have actually fallen in love with Down syndrome.  How could I not?  It is a part of Braxton, and part of what makes him who he is.  I couldn't love Braxton without also loving his extra 21st chromosome, just like I love his hazel eyes and his ball chin.  I am not a fan of some of the negative things that sometimes come along with Down syndrome...but all of my kids have things about them that I'm not a fan of.

This month is Down Syndrome Awareness Month.  On Saturday we are participating in our local Buddy Walk.  I am new to all of this.  And to be honest, a little intimidated.  But we will walk with pride for Braxton on Saturday.  And we will do our part to change the way the world views people who have Down syndrome.

**********************

Did you know that around 90% of babies who have Down syndrome are aborted and never given the chance to fill their home with the same kind of love Braxton has filled our home with?  I'm not talking about a love that feels sorry for a person, or a love of sympathy or lack.  I'm talking about a love so deep you never knew you could love like that.

Ninety percent.

Weight Update

11 pounds, 6 ounces!!!

We are on the right track!  Surgery is still scheduled for October 11.

Go Team Braxton!

We are excited to be participating in our local Buddy Walk this year.  The Buddy Walks are held all across the nation, and are held to help raise awareness and funds for Down syndrome.  Plus they are a lot of fun for families.

We have created a team in honor of Braxton, Team Braxton.  (Creative name, huh?)

If you are local and would like to join our team, click on the link below.  We would love to have you!

Register for Team Braxton

Walk is October 8, 11:00 AM.  Last day to register online is Wednesday, September 7th.  Hurry up!

Q & A About My Experiences With Down Syndrome

I started this post as a draft quite a while ago, and am finally sitting down to finish it.  I wanted to get down in writing my thoughts and feelings on questions I get asked a lot.  And I wanted to do it while things were still "fresh", as I suppose it's possible my answers may change over time.

I have been asked a lot of questions since learning of Braxton's diagnosis of Down syndrome.  Some questions I get asked a lot.  And some questions I ask myself.  So here are my answers to the questions I can remember.


Did you know your baby was going to have Down Syndrome?

I don't know why, but this is a really popular question.  In fact I find myself wondering it and asking the same thing when I speak with other parents.  The answer is no, we did not know that Braxton would be born with Down syndrome.  In fact, we didn't even suspect anything until he was 3 days old and the NICU doctor told us he suspected it.  Even then, we were doubtful.

During the pregnancy we did the first round of genetic testing (ultrasound and blood work at around 14 weeks) and did get back some numbers that were slightly concerning...1 in 86 chance of having Down syndrome.  But we were told that the numbers weren't alarming until they were higher than 1 in 50.  Plus the test has a 30% inaccuracy rate.  So we prayed about it, had peace, decided that we weren't worried, and decided not to get the follow-up test.

Also, I shared with a friend that early in the pregnancy I couldn't "shake the feeling" of the baby having Down syndrome.  But I chalked it up to typical expectant-mother-worry.

All that to say, no, we didn't know ahead of time about Braxton having Down syndrome.  But in hind sight, perhaps we were suspicious.


Do you wish you had known ahead of time?

A lot of people talk about "wanting to know" before their baby is born, so they can prepare themselves.  I can see their point and I think this is just a personal preference.  I am actually glad that we didn't know, for a lot of reasons.  First of all, since we couldn't immediately see that Braxton had Down syndrome, we went home and settled in with our newborn.  We had two days at home to just love on and bond with our new baby.  I look back on that time with such fondness.  In some ways it was the calm before the storm.  And for those two days, my baby was perfectly "healthy" and I didn't have to worry about anything.  I will probably never completely have that again with Braxton, so it is precious to me.

Another reason I am glad that we didn't know ahead of time is that I was able to go ahead with giving birth at a birthing center (well, sort of).  Had we known about Down syndrome, I imagine there would have been pressure to deliver at a hospital.  Plus there is a good chance Braxton would have ended up in the NICU without going home first.  Which goes back to my first point, that I was so glad we had some time at home to just be a family.

I also think that if I had known ahead of time, the pregnancy would have been a lot more stressful.


Would you have done anything different if you had known?

Like I said above, there is a good chance the birth would have gone differently had we known ahead of time.  But I think what people really mean is, "would you have terminated the pregnancy?".  I have actually asked myself this question.  I have always said that I would never terminate a pregnancy due to a baby having a disability.  But now the question became a lot less hypothetical.

I can honestly say, NO WAY would I have terminated the pregnancy.  I would give birth to Braxton a thousand times over.


When will Braxton meet his milestones?

I find this question kind of funny, because I have never met two babies who have developed on the same "schedule".  My own kids, for example, have started walking at anywhere from 12 months, to 16 months old.  A friend's baby started teething at less than three months old, while many others have been toothless at their first birthday.

Braxton will meet all his developmental milestones, just like any other child.  Yes, he will likely be a little bit slower at doing so, but he will get there eventually.


How are your kids handling things?

My kids love their baby brother.  Period.

With the exception of Biniam, who is 16, the little kids have no idea there is anything "wrong" with Braxton.  The night before our playdate last week, I told the kids what we were going to be doing.  I said, "We are going to a playgroup for kids who have Down syndrome, since Braxton has it".  To which Emma quickly replied, "I didn't know that!".  Not that she even knows what Down syndrome is (aside from what we told the kids in the beginning).  To Emma, all people look different, and I think she has yet to notice anything unusual with people who have Down syndrome.  I guess she was just surprised to hear that Braxton has any sort of "label".

The kids of course see that Braxton gets extra attention from therapists and nurses and frequent doctor appointments.  But I think they just figure that is part of the territory of having a new baby brother.  And they don't seem to be jealous or threatened by any of it.

The only real negative emotion I've seen so far, is that Emma still gets worried every time Braxton has a doctor appointment, that he will have to go back to the hospital.  I try to reassure her by saying, "no, I don't think he will have to go to the hospital, but if he does it's because we want him to get the best care possible".

**********************


I am happy to answer any other questions, as I think it is good for me to process through things, and it might be helpful or perhaps just interesting for others to read my answers.  So feel free to ask away, either in a comment here, or by emailing me at (shana white 78 @ hotmail dot com) - no spaces, of course.

Taking Baby Steps

This week we went to a play date with a fantastic local association (TVDSA) for people with Down syndrome.  We first heard about this association when we were in the hospital for the second time with Braxton.  We saw that there were play groups scheduled a couple times a month, along with other great activities and family support, and made a mental note to get involved.

It took us until this week to finally step out and get involved.  At first we were busy, in and out of the hospital, getting adjusted to life at home, etc.  Then we heard about a family BBQ with the association that sounded like a lot of fun.  I wanted to go, and toyed around with the idea for a while.  And then, a few days before the BBQ it dawned on me:  I was afraid to go.

I wasn't afraid of meeting new people, or worried that we wouldn't have fun.  I was afraid of being around people with Down syndrome, and not liking what I would see.

Braxton is young, and very much like a "typical" newborn.  He nurses, he coos, we snuggle, and we go about our day.  I often forget that he has Down syndrome.  The fact that he doesn't have a lot of the classic "features" makes that easy to do.  Of course there are weekly reminders like visiting with his therapists or going to doctor appointments.  And I am very good at rattling off his medical issues to any new care provider..."Hirschsprung's, VSD, Trisomy 21....".  I'm used to saying those things without any thought or emotion.  No big deal - it's just what we're dealing with.

But then there are times when it hits me like a bat to the head.  Like reading a blog where a three year old boy with Down syndrome has stopped progressing with his vocabulary.  Or when I read a book that talks about "mental retardation" and the varying levels of functioning with Down syndrome.  Suddenly it hits me that this isn't just something I'm educating myself on...this is my SON we are talking about...and he has the SAME SYNDROME I am reading about.

I realized that if I went to the BBQ I would be surrounded by people who have this syndrome I am slowly learning about.  This syndrome that my son has.  And I was worried that I might not like what I see.  Maybe I have been in denial.  Or maybe we just haven't had enough time to let things fully sink in.  Maybe it is a process that will take months or even years.  Or maybe we just continue moving on and learning and growing along with Braxton.

I am happy to say that we went to the playgroup on Monday, and had a fantastic time.  The other moms were warm and friendly and full of helpful information.  They've been in my shoes, and it was helpful to hear that.  There was a wonderful mix of children who have Down syndrome, and their siblings who do not.  My kids had a blast.  I enjoyed seeing the interaction between the moms and their children with Down syndrome.  It was just like any other mother-child interaction...snuggling, playing, redirecting, disciplining. What I really loved seeing was that the kids who have Down syndrome were having a great time playing, walking, running, making friends.  Of course they were.  What was I expecting?

I went away thankful for the new friendships I made with moms of children with Down syndrome.  But I am still trying to figure out if I fully understand that I am one of them.

He Rolled!

Yesterday I placed Braxton on the floor next to me, while I sat down at the computer.  I put him on his back, but after a few minutes I looked and saw that he was close to rolling over to his tummy.  So I grabbed the video camera and caught his very first roll-over!

I get excited when any of my babies do something new like this.  But for Braxton, this is especially sweet.  Babies with Down syndrome are typically behind, developmentally.  And so far, Braxton has been no exception to that.  He is, of course, very small - partly due to all the complications he's had from Hirschsprung's that have kept him from gaining weight very fast.  He is also still very much like a newborn when it comes to head/neck control.  Although he is gradually making improvements in that area, too.

We have been blessed with some wonderful therapists for Braxton.  One of his Occupational Therapists comes to our house weekly, and she is awesome.  She is working on things like muscle development, head control, core strength...all things to help Braxton meet his milestones like crawling and walking and well...rolling over!

We also have another Occupational Therapist who specializes in head and mouth issues.  Braxton's tongue is set back a little far, which makes it harder for him to nurse efficiently.  He is able to nurse, but he could be even better at it, so we have little exercises that we do to help with that.  He also drastically favors resting his head on his right side, which has caused some issues with the shape of his head and also pushed his right ear forward slightly.  This therapist is known as the "head expert" and is confident that Braxton's are easy fixes and that it should only take a few weeks to correct them.

Three cheers for baby steps forward!

Round Three

I am beginning to feel like a broken record. We are back in the hospital. Actually, this is a different hospital. We are at the children's hospital downtown. We are not in tne NICU this time - just the pediatric floor.

On the phone yesterday, with our surgeon's assistant, I mentioned that Braxton hadn't stooled in 24 hours (despite our dilitation and enemas). Within five minutes I had gotten a call back that we needed to be admitted again. The surgeon had already been concerned about the size / condition of the abdomen, and this pushed him over the edge.

Since we've been here, Braxton's abdomen has continued to get larger, and we are still getting minimal or no stool out of him. Braxton is currently off all nutrition besides IV to hydrate him, and is on suction. He is basically sleeping through everything right now.

We have come down to our only option of doing a colostomy. The plan is that this will be temporary, and will allow Braxton to improve enough for his surgery in July (to remove the bad part of his colon). So it looks like we will be on the surgery schedule tomorrow for the colostomy.

It's so hard to have to make these decisions and to see my baby suffer. Braxton continues to take everything in stride, which is nice on me. But sometimes I just wish he would scream in protest. He certainily deserves to.

I'll post more updates as I have them.

Life this week

It's been confirmed that Braxton has Hirschsprung's disease.  He is scheduled to have surgery in a couple of months.  Our biggest challenge right now is getting him to gain weight so he is strong enough for surgery.  So far his weight keeps going up and down, so we are now adding formula to his tube-supplements to increase the calories a bit.

Aside from the health issues, Braxton is doing really well.  He is super sweet, and such a content baby.  He is becoming more alert and responsive to our voices and movement.  He is the best snuggler and can sleep anywhere when he's tired.  He's also becoming an excellent nurser which is so great, as that was one of my major concerns.  Praise the Lord!

In other news, I have been working on getting back into shape.  I've talked about some of the races I have planned for this year, which I'm super excited about.  Want to know one of the first thoughts that went through my mind when I went into labor three weeks early?  "Great - I get three extra weeks of training in!"  I know, I'm sick.  I went for my first run exactly two weeks after Braxton was born.  He was in the hospital, the kids were out of town, and I just needed to do something "normal".  The run was pathetic - more like a "trot" with about six walking breaks over a 2 1/2 mile loop.  But I've been getting better quickly, and yesterday ran two miles in 20 minutes.  Not that that's anything to brag about, but considering three weeks ago I was probably at a 13+ minute pace, I am improving quickly.  Now I just need to find the time to start increasing my distances.

One Month

Dear Braxton,

Today you are one month old.  It's a milestone I might have otherwise forgotten, but your sister wouldn't have it.  She's been counting down for the past week.  To commemorate, we made rice krispy treats.  I ate most of them.

This past month has been like a dream.  Something I never could have imagined.  I actually go back and read blog posts just to remind myself of everything.  Some things I want to forget, but I try to force myself to keep them fresh in my mind.

I thought your unusual entrance into this world would be your big "story".  But it's clear that your story has barely just begun.  You have touched my life so deeply and profoundly.  I am so thankful for this past month.  I am thankful for the two days we had at home, right after you were born.  They were a little stressful as we began to realize that something wasn't right.  But looking back, I cherish those days when things were "normal".

We have had many peaks and valleys this month.  I cherish them all.  The times when you were in the hospital and I couldn't hold you or nurse you broke my heart.  But it made me treasure you even more.  I have also seen precious children who are much more sick than you, and it makes me so thankful for the health you do have.

I have learned a lot about letting go this month.  God has taught me so much about how unimportant my plans and ideas are.  And you know what?  I don't feel empty or like I've lost something when I let go.  I feel more full; more secure in God's plan.

Braxton, I love you so much.  I love every little detail about you.  I could have you curled up on my chest, tucked under my chin, all day.  I love just pressing my nose against your head and breathing you.  I've had to work through my grief over what I thought was the loss of your "newborn" stage.  I felt like all your challenges, all your tubes and hoses, were taking away from my experience of enjoying you.  And I know too-well how quickly this stage passes by.  But God showed me that perhaps because of these challenges, I might actually get to enjoy you more.  Just you and me.  Lots of quiet times.  No distractions from the busyness of life.  We're stuck at home, tethered to one spot...and maybe that's okay.

I've had to let go of things.  But one thing I hold on to tightly, is this.  The One who made you has BIG plans for you.  And I can't wait to see you fulfill them.

Love,
Mom

My reality

First off, I am writing this from my iPad, with one hand, while I nurse. There are going to be typos. Please deal with it however you can.

Most of you probably think we are sitting quietly at home in newborn bliss, sniffing our yummy baby and memorizing his every tiny feature. There is a little of that going on, and for that I'm grateful. But our reality is much more stressful.

I don't want this post to be all about complaining. But I do want to paint an accurate picture. We've been home since Friday afternoon. Since then, here's how things have gone.

Saturday we had a visit from our home nurse. Braxton's feeding tube had come out the night before, and we were waiting to have the nurse put it in for us (we fed with breast and bottle in the meantime). Putting the tube in was very traumatic. I'll leave it at that. Braxton's weight had gone down from 7,9 at discharge to 7,1. We were advised to increase his feeding supplements. His abdomen measured 33 cm, which is the high side of normal.

By Saturday night, Brian was noticing Braxton's abdomen seemed tight. By Sunday afternoon Braxton was measuring 35-36 cm (he was 36 cm when he was last admitted). We talked to the surgeon on the phone, made note of what to watch out for, and agreed to go in Monday.

Monday at the surgeon's office, weight was up to 7,5 so we felt better about that. The dr agreed that Braxton was very distended but decided that unless he got worse or wasn't keeping milk down, he didn't need to be admitted. He gave us instructions to be more aggressive with our dilation/enema routine, to try and get things moving.

It's now Wednesday, and things haven't gotten worse but they're not much better, either. Tomorrow we go in to see the surgeon again, and to hopefully do the biopsy that will confirm or rule out hirschsprung's disease. I am praying and believing for ruling it out.

In the meantime, yesterday we had a follow up apt with the pediatrician. Today we have a visit from occupational therapy. We also have almost daily visits from norco, bringing us medical supplies. Plus twice-weekly visits from home nursing. Plus visits from IT, the state-run infant-toddler therapy program. Plus I've been scheduling cardiologist appointments and hearing tests. Plus all the paperwork. I have a giant binder that I take wherever Braxton goes that's full of his medical information.

Things have been really hard on me emotionally. I hate that my baby has to go through all this. I hate that he is constantly tethered to oxygen. I hate that I can't just pick him up and carry him with me around the house or outside. I miss my kids. The three Middles have been gone for 12 days. They come home tonight, but I am also worried about how I will take care of everyone. Braxton takes up at least 1 1/2 hours of my time every three hours.

I am trying to do things for myself. I am getting a little exercise everyday, drinking tea, and clinging to a few scripture verses. I am hanging in there. But it's hard.

Tuesday in the NICU (I love good news!)

Today I am being trained on how to do Braxton's colon dilation and saline enemas. Add this to the list of Things I Never Wanted To Know How To Do.

But here's some good news.

1. Braxton has been tolerating his (small) milk feedings, so tomorrow we get to try breastfeeding.

2. Braxton's xrays continue to look good. In fact, his Dr told me that if he was just seeing him for the first time, he wouldn't think he has hirschsprung's.

3. The surgeon saw Braxton last night, and was so encouraged at his progress that we are stopping the antibiotics tomorrow night. AND if Braxton's feedings are still going well, we could be going home as early as this weekend.

4. We are going to go ahead and do the colon biopsy about a week after we go home, vs waiting until Braxton is ready for surgery in about 5 weeks. If the biopsy comes back good, we won't need to do surgery. Originally the Dr's were so sure they were looking at hirschsprung's, they were just planning on doing the biopsy on the same day as surgery.

5. The results of yesterday's brain monitoring came back completely normal. Braxton was not having seizures, just little twitches in his sleep.

6. My little boy is stinkin' cute.


Your prayers are working, and we are eternally grateful.

Monday in the NICU

When we got to the NICU on Thursday, Braxton's abdomen was swollen to a huge 36cm, from his normal of around 31.5cm, and extremely red and tight. He was immediately put on a suction tube that slowly drew air and fluid out of his tummy. His white blood count also indicated an infection, so he was placed on a cocktail of antibiotics.

Slowly the infection and swollen abdomen have gone down. Yesterday the suction tube was removed, with a close eye kept on the abdomen circumference. Thankfully the circumference has remained steady around 32cm. Today Braxton is allowed to get 10ml of milk every three hours, and we'll continue to monitor his abdomen.

Every morning Braxton is getting xrays to check on the status of his colon. Yesterday, the dr told us that there had, in fact, been a blockage (probably a meconium plug) and that it was now gone. That now raises question as to whether or not Braxton even has this disease, called hirschsprung's. We have to continue down the path for surgery, assuming he does have it. But a biopsy will be done on the day of surgery, and that will determine whether or not we go ahead.

As I've been sitting here writing this, a team of nurses have been working on putting brain sensors on Braxton's scalp to monitor his brain activity. Braxton had been doing some unusual twitching with his arms and legs that had his nurse concerned. As of right now, we've been monitoring his brain for about 15 minutes, and the dr likes what he sees. The twitches are probably not seizures, and probably just Braxton moving through sleep cycles.

Pics!

 Here are some pics from "round one" in the NICU.

Can I just say how much I hate the fact that I am at home right now, while my baby is across town at the hospital?  Mommies are not meant to be apart from their newborns.  It sucks.  Just being real....