His First Mass!

Last night was a milestone in our family.  It was the very first time we, as a family, did something out of the house!  It took about 30-45 minutes to get everything and all of the kids ready, but finally we squished into the van, loaded all the equipment up and voila, we were off!  An adult has to be next to Dominic at all times in the car in case there is an emergency so the older three kids were all packed like sardines in the very back seat of the van.  We realized we're going to need to spring for some smaller car seats!  Where did we go for our very first family outing you ask??  To mass of course!

Our very dear friends, the Franciscian Friars of the Renewal, invited us over for mass and dinner.  Now, we are not able to bring Dominic to a regular church because he can't be around all of the people in an enclosed space, so he has never been to mass before.  Since there were only three extra people (the friars) in the chapel, it was no big deal to bring him there.  So, not only was it our very first trip out of the house together, it was WAY awesome to be at mass together as a family!  And to top the awesomeness off, it was the first day of the new translation of the mass AND the first day of Advent (Sunday starts the Saturday evening before in The Church).  Triple Awesomeness!!!  Ah, the new translation is so beautiful... so respectful and adoring of our Lord.  And the chanting... ahhh, perfect.  I may have thought  I was in heaven if I wasn't snapping at Anthony to stop sliding around the floor, telling Mary Grace she couldn't take her shoes off during mass, and listening to little Dominic breathe like Darth Vader (Jake was sitting next to Mike, which is why he escaped my wrath).  ;)

It was just amazing to have him there, in front of the alter, there as Father Pio Maria raised the chalice and paten, there as we received the body of our Lord.  There as we praised our God and entered into the mystery of the mass.  Ahhhh.  All is right now.

Then after the mass we all sat down to a dinner, which is always such fun with the friars.  We ate, talked, laughed, then after dinner Father Pio Maria assumed his spot and cuddled Big D for quite some time.  Brother Timothy became a human tug boat, taking turns pulling the kids around in a cardboard box, or by his cincture (the rope around his waist), while Brother Stephen slaved over the dishes in the kitchen... I think he got the short end of the deal ;).

All in all, we could not have asked for a better night.  We are so grateful God has placed these wonderful men in our lives.  They enrich and lift us up in ways they will never know.  Just another little way God has prepared this path for us.

Brother Timothy tugging the kids around

Mary thoroughly enjoying herself!

Brother Timothy TOTALLY wiped out after doing that for about 30 mins!

The Father Pio, Heavy D Gang sign... solidarity!

Father Pio Maria loving on our little man.  Dom just loves being serenaded by him!

Not strong, horizontal

We don't have a nurse tonight so Mike and I are taking turns staying up with Dominic.  As you can see, it's my turn.  I've been sitting here in his room since 1 this morning and from the view of the nurses rocking chair, I see his bed, his shelves full of his medical supplies, his ventilator, tubes peeking under his bumper pads, his big oxygen tank, his feeding pump... and it made me realize something.  Since all of this has started people have told us how amazing we are.  It always makes me cringe, because we're just normal.  Sitting here looking at all of this stuff makes me realize how much harder it is to be faithful, to be inspired, to be trusting when your life is just normal.  When things are right side up, and your eyes are looking straight ahead, it takes effort to look up to heaven.  For us, being knocked down, we are on our backs, requiring no extra energy to look up.  It is the stronger ones that don't need something like this to stay faithful; they have the strength to make that extra effort.  For us, what else can we do but to look up?  God has given us a gift, a pass of sorts, a time to focus on Him, trust in Him, and rely on Him to bring us upright again.  Not too soon though, I'm not quite ready.

Cardiologist and Thanksgiving

I just reviewed my last post that told you all about Neurology and Endocrinology... uh, sorry about that ;/.  For some reason I gave you the VERY long explanation... Today won't make you so tired, so you're welcome in advanced  :).  Sorry I haven't written about this sooner... every time I have a free minute to write the kids take over and want to watch a cartoon (when I'm pumping in the morning).

So, we went to the Cardiologist the other day and Dominic got an electrocardiogram and an echocardiogram (this is embarrassing but I honestly thought those were the same thing).  The first is where they hook up lots of leads on your chest (see picture below), the second is where they take a 20 minute sonogram of your heart.  Anyway, long story short, he still has two holes in his heart.  The first is a ASD/PFO (atrial septal defect or patent formen ovale) and is no big deal.  Everyone has a hole in their heart between the top two chambers (the atria) when they are in utero called a PFO whose purpose is to bypass the lungs and shunt the oxygenated blood the momma provides out to the developing body quicker (since babies don't use their lungs to breathe before they're born).  Normally this hole closes up at birth but the Doc said about 1 in 4 adults still have this little hole and are basically asymptomatic.  He said there are hypothetical risks with activities such as scuba diving but this hole doesn't concern him at all.

The second hole is called a VSD (ventricular septal defect) and is a small home between the two bottom ventricles.  This is a very common type of congenital heart defect and most of the time is no big deal.  Luckily the septum, which divides the two bottom chambers, continues to grow as the baby grows so this will normally close up on its own.  The Cardiologist said he expects this hole to be closed in about 6 months.  Woo Hoo!

See, that wasn't as bad as last time, huh!?!?  OK, now onto the fun stuff.. Dom enjoyed his first Thanksgiving!  We were going to stay home but since Mike worked we would just be here by ourselves, so I decided to bring him over to my brothers and we just stayed in a back room.  People would peek their head in to say hi and members of my family would come in to visit.  It was really nice going out for something other than a doctors appointment!  I am getting used to getting everything gathered up and out the door.  It is still alot, but I've done it so much now it's not as overwhelming as it was.  Here are a few pics to make you ooohhhhh and ahhhhh :)


EKG




Turkey Coma





Dominic and his Great Granny.  This is the first time
she has ever held him.  Look how happy she is!



This is gonna make your brain hurt...

Alright, you ready??  I'm about to tell you about the past two days, three doctors and all that they said.  Thinking about it makes me have brain freeze, so I apologize in advance.  :)

Monday we went to see the plastic surgeon.  That was a total waste of time and energy.  First let me say that I am very happy to have this plastic surgeon.  I have worked with him at the hospital and he is very, very good.  Next let me say that his office is in Southlake.  Right next to Central Market.  Right across from the fancy Southlake Town Center.  OK, got a picture in your head?  It was VERY fancy, he was dressed very fancy, the hand scraped hard wood floors were very fancy, the perfume they spray in the examination rooms was very fancy (which by the was was uncool seeing as Dominic can't be around strong smells).  So, he comes in, looks in his mouth, says "umhmm, just as I suspected, come back in 6 months and we'll schedule surgery."  Now couldn't he have just done that over the phone?  So, Dominic has a bifid uvula, meaning that thing that hangs down in the back of the throat is split in two, meaning he almost certainly has a submucous cleft palate.  The surgeon says he is almost positive Dominic has a submucous cleft (meaning the bones under the skin on the roof of his mouth did not close as they should) but we have to wait til he is a bit older to be 100% sure.  He referred us to a ENT b/c he is also sure Dominic's anatomy in his inner ears is not formed correctly (awesome) which makes him susceptible to chronic ear infections and deafness (again, awesome).

So, the problem with the submucous cleft palate is the muscles that normally attach to the hard palate (the bone in the roof of your mouth) did not attach where they were supposed to.  So, surgery is needed to cut those muscles from where they attach now and bring them together in the middle like they should be.  The consequences of not fixing the problem is feeding troubles, nasal talking, speech impediments.  Thanks but no thanks, he has enough going against him.  So, he will stack this surgery on top of another one to reduce the amount of anesthesis he gets.  See, although he is uber fancy, I love him.

Now onto the Neurologist... If you thought that (above two paragraphs) were bad, just wait.  Get your science hat on right.... now!  OK, let me start by saying I really like our Neurologist.  He is a quirky guy, kind of a goof, super smart, very thorough, patient with us asking questions... all you want in the doctor who is managing your kids brain abnormalities (I don't want the doc that won the popularity contest in high school if you know what I mean).  SO, he has two main concerns:

#1: His brain is not myelinating as it should.  Remember myelin is the fat that insulates the nerves.  If you think of electrical wire, the nerve would be like the wire and the myelin would be like the rubber coating.  If you don't have the myelin, the signal does not travel through the electrical wire as it should.  For some reason, Dominic is not myelinating.  He asked us if we think Dominic can see. I responded "not really" and he very matter of factly said, yeah I don't think so either.  I told him the Opthamologist said his eye ball was healthy but for some reason the signal just wasn't being received by the brain and he said this could be from a lack of myelin covering the optic nerve, which is the nerve that runs from the eyeball to the brain.  He is concerned that this may be caused by a mitochondrial DNA problem, which leads us to his second concern.

#2: So, he says given all of Dominic's problems and dysmorphic (different) features, it makes no sense why all of the genetic tests have come back normal.  That coupled with lab work and the fact he is not myelinating as he should leads him to believe his problem may lie in his mitochondrial DNA.  OK, high school science lesson, ready??  Every cell in your body has tons of these little things called mitochondria, which is like the power house of the cell.  Their job is to turn food we eat into an energy source that the cell can use, ATP (are these terms ringing high school science bells yet??).  The mitochondria also has a separate DNA that the rest of the cell (the "normal" DNA is in the cell nucleus).  It gets it's DNA from the mother only, instead of from the mother and father (does that mean this is all my fault??).  So anyway, it is possible that something went wrong in his mitochondrial DNA rather than his normal DNA which is why the genetic testing didn't pick anything up.  The mitochondrial DNA requires a special, specific test to run those genes.  He says this is not only important so that we know what is wrong, but with some metabolic genetic disorders, there is treatment.  Now, treatment doesn't mean fixing what is wrong, but it could potentially mean stopping certain progressions. 

Also, he went up on his seizure medicine, not because his seizures are worse, only because he is a big boy now and his weight gain shows he needs a bigger dose (yeah for getting chunky!).  He also sent us for a blood draw to check his pyruvate and lactate levels.  So, lactate is a substance that is made when your body is hypoxic (lacking oxygen).  While he was in the hospital his lactate levels were consistently elevated, but we weren't sure if that's because he was not ventilated adequately or from some other reason.  Lactate could also be high when you are talking about some of these mitochondrial DNA disorders.  So, if the blood test results come back even slightly elevated, he will put us on a protective mixture of certain vitamins until we can get into the metabolic geneticist and get diagnosed.  Phew... you still with me????

OK, now onto the GI doctor:  So, we have been suspecting a milk and soy protein intolerance so for the past 2 1/2 weeks I have been avoiding all soy and milk (which by the way is not that easy).  However I have been eating certain soy ingredients, such as soy oil and soy lecithin b/c they are so processed all of the protein in them is denatured (broken down).  Well, yesterday they tested his stool and sure enough he has blood in it, meaning his intestines are inflamed.  The doctor said he has a soy and milk allergy (these are the #1 culprits of blood in the stool) so now I have to go off of soy lecithin and soy oil.  OK, stop reading now and go to your pantry.  Close your eyes and pick up anything in there.  Read the ingredients... yep, you are sure to find one of these two ingredients.  Again, let me say I HATE SOY!!!  So, now onto an extremely restricted diet for me.  I will be eating alot of plant fat sources so I don't loose too much weight and so my milk can be nice and fatty for Dominic.

OK, next... we told him we thought his sphincter on his rectum was too loose, cause constant stooling.  He said "no, that is impossible, it is from diarrhea from the milk and soy."  Then he went ahead and took a look, and lo and behold, yep, it's too loose (apparently he doesn't know Dominic... he has a way of tricking doctors).  So, his muscle tone is low, causing it not to close all the way, and during the rectal exam he found the internal sphincter is not in the correct place (awesome... again).  To verify this, they have to do a test where they put him under light anesthesia and apply an electrical current to his muscle to see exactly where it is.  If it is in fact in the wrong position, it will need surgical correction if we ever want Dominic to be continent (which we do!).  So, yes, we have stuff wrong from the tip of our tongue down to our butt... again, awesome.  The good news is that this doc will also piggy back onto another surgery, most likely the one where his testicles are brought down.  The dietitian came in after that and said how lucky we were to have this doctor.  She said he is world-renowned... and I agree, I am so happy to have him.  I love his accent (he is African), his brains, and his bedside manner.  He spent ALOT of time with us and explained everything very well.

The dietitian is keeping Dominic on his current feeding amount because his growth velocity is right on.  He has gained weight and caught up to where he is supposed to be since he has gotten home (it's that healing environment).  She said she will help us learn how to blend real food for feeding at the next appt (in 3 months)... YEAH!!  I am so excited about this!  I refused to feed my kid canned food... I'm so happy to be able to give him real food, just like every other member of the family!!

OK... now that your brain energy for the day is spent, I will stop there.  You can blame it on me if later today someone is talking to you and your eyes glaze over b/c you have spent all of your brain energy on this blog post.  We are going to the cardiologist today so I'll post about that tomorrow.  Until then...

In Jesus and Mary,
Chasity

Cuddle Day

Yesterday was an extra special day.  We didn't have a nurse during the day so I had to stay home with Dominic all day.  But since Mike was at work, and Dominic isn't allowed to go to church yet, my parents picked up the other kids for mass.  After mass they took the kids to lunch then they played at my sisters house for the rest of the day.  What does that mean for me??  A day by myself with Dominic!  We cuddled, watched a show on Netflix on the big screen (our 17" computer) ;), and took a nap together.  I drug Mary Grace's mattress into his room and we got to lie down together and snooze for the first time since he went back into the hospital (when he was 5 weeks old).  If there is one thing that boy does well, it's cuddle.  His round little body and chubby little legs just curled up and fit perfectly next to me.  We slept a good hour and a half.  Bliss.

Then in the evening, my mom came over (after doing my groceries- thanks mom!) and helped me clean up the house (did I mention she is awesome?).  She is now an Eucharistic Minister so she also brought me communion... the best gift she could give me.  Then last night our good friends, the Franciscian Friars, came over to visit.  Thanks to Mrs. Gilley we had a wonderful dinner and as always, a good visit.  All in all, a good day.

So today starts our marathon of doctors appointments for the week.  Today we go see the plastic surgeon for his submucous cleft palate and for his little bottom (the sphincter doesn't close like it should).  I am excited to have this particular surgeon on his case though because I have worked with him a few times with burn kids at the hospital and I have always been so impressed with him.  As far as his bottom goes, because his little rectum doesn't close as tight as it should, he has constant stooling that has led to breakdown of his skin.  His butt looks terrible and we have tried every diaper cream there is, including a few prescriptions.  Well, yesterday I decided to try cloth diapers as a last ditch effort and guess what, they are working like magic!  His butt of course in not totally healed up but it looks a TON better!  This cracks me up because with every kid this has been a debate between Mike and I.  I always want to do cloth diapers, he doesn't.  So finally, after 4 kids, I get to try them.  Really I don't know why I'm excited... all it means is more laundry.  It is cool though that it has helped his little bottom so much!

Well, lots to do today!  I will let you know how the visit with the plastic surgeon goes.  I'm wondering if we'll be in the waiting room with Southlake moms coming in for a "touch up" ha! (I say Southlake moms b/c his office is in Southlake... no other reason... honestly... ;). 

I am just trying to continue to trust in God's plan.  This is a spot where I am struggling a little bit right now.  It seems that since he has been home, this has been harder.  Please continue to keep us in your prayers.

In Him,
Chasity

A birdseye view of how we were lying down together...

Transitions

I have heard from many that my abrupt ceasing of updates about Baby Dominic has thrown a wrench in their morning routine.  They say they no longer have anything to look at in the morning with their cup of joe (sorry!) and have requested updates again.  So, for all of you, and for the sake of my own sanity, I will try to start back up, while simultaneously giving me that creative outlet I so need.  I am transitioning all updates to this new blog I have made for Baby D, so please subscribe to it (should be a button on the right side of this post) so you can be notified of any new posts.

It's not that I wanted to stop writing, it's just that being home these past two weeks have been a time filled with joy, exhaustion, love, being overwhelmed, beeping, and adjustment.  We got so used to our old new life that our new, new life has taken a bit to settle into.  I am having to re-get used to being at home with the kids all day (well, except for school days...), learning how to manage the new routine of having someone in our home all night and the first half of the day, and am dealing with the inevitable changes our kids have gone through during these last 4 months.  But now, I feel like we are settling in.  The kids seem to be calmer, less anxious and it is so nice sitting down as a family, all 6 of us, and having dinner, or reading a book, or anything else.

As far as the nursing goes, it isn't as weird as I thought it would be.  All of our nurses are really great and I have been able to make peace with the fact that they are here to help, and while I have them here I need to be doing stuff I can't do when they're gone.  So, I clean, spend time with the kids, nap sometimes.  It is weird though, like having a babysitter watch your kid while you're home.  I have that whole guilty complex, like I should be the one taking care of his every need, not some stranger.  But I also realize that this new life can burn you out FAST so I am trying to take the time I have, when I have it.  With all that being said, it is a little weird to have someone always there... when I bathe him, or cuddle him, or sing to him.  I just try to remember that this is our home and they are guests, so I do what I normally would do.  I walk around in my PJ's, treat my kids like normal, and love on Baby D like normal.  And with it being our home, I am kindly assertive about certain things, like the way we like him fed, or the fact that we don't allow shoes on the carpet in his room.  I have found it easier than I thought I would setting boundaries while being friendly and respectful.  Really I should attribute that to the nurses, they have all been so accommodating and professional.

So, most days we have a nurse come at 10pm til 6 am for the night shift and then another nurse comes from 6 am to 2 pm.  As you might guess if you see the time on this blog, our nurse for tonight called in sick, so I am up with Dominic.  Tomorrow my parents will take the kids and when the day nurse gets here, I will sleep.  Speaking of parents, have I told you how blessed I am to have my mom?  She comes over everyday after the day nurse leaves and stays with me until Mike gets home.  Really, there is just no way for one person to watch all the other kids, cook dinner, and do normal household stuff with Dominic... at least no safe and attentive way.  He is constantly needing something and he has to be monitored so closely the other kids would be neglected.  I love my mom.

So, as far as the docs go... we went for an evaluation for a head re-shaping band last week to treat his plagiocephaly (or mis-shapen head) caused by the prolonged hospital stay.  I knew that I should have been turning his head more when he was in the hospital, but I delibertely made the choice not to because for a lot of it he was so uncomfortable and in pain I just didn't want to move him from his comfy spot.  So, lesson learned: you get a hole in your neck, your crazy pediatric PT mom won't worry about repositioning too much ;/.  The PT who evaluated him said he has mild plagiocephaly and she is on the fence on whether or not to treat it, but even if she wanted to she couldn't.  They now use a 3D imaging machine to get the current head shape that they then use to make the re-shaping band.  To use this machine though the babies need to have some sort of head control, and oh yeah, they need to be able to have the neck uncovered.  Not so cool seeing as the trach tie that is holding the trach in that is keeping him alive is around his neck.  Apparently only normal kids need these bands because no provisions were put into place in the design of this method that allows for children with special needs to be imaged.  Thanks.  So, the plan for now is to come back in 2 months and hopefully he can have better head control and we will re-assess.

Speech and Occupational Therapy has come out to evaluate him, and we are still waiting on Physical Therapy.  I am excited about our ST and OT, they both seem knowledgeable.  I think we will probably start with the therapy the week after Thanksgiving... woo hoo!  As I mom, I have total brain farts about PT stuff when it comes to my kids.  I was talking to the OT and was like, well, he shouldn't have head control yet, he's only 4 months.  Then I realized that was totally wrong.  Indeed he should.  He is developmentally delayed, but he is my baby so I just can't see it.

We also went to the endorcinologist, and as you can probably guess nothing exciting happened there... I will spare you the boredom of that story.  The Opthamologist though was a little more eventful.  He assessed Baby D for quite some time, then decided to dilate his pupils then assessed him more.. total with him about 30 minutes (impressive).  I have been thinking for quite some time that Dominic can't see well.  A mom just knows these things.  The doc said that he is extremely far sighted and that he has cortical visual impairment.  He's not sure the extent of it, but he did seem sure that he does have visual impairment.  So, cortical visual impairment is different from normal blindness because the problem is coming from the brain, not the eyeball.  So, either in his brain, or on the way to the brain, the info is getting lost causing his brain to not recognize what his eyeballs are seeing.  The doc is sending us to The Retina Foundation in Dallas for a more specific test that will quantify how much he can see.  Apparently they will put contacts on his eyes and somehow measure his level of vision.

Next week we have the plastic surgeon, Gastroenterologist, Neurologist, and Cardiologist.. all before Thanksgiving.  Well, by now you all probably are having vision problems too reading this ridiculously long post, so I'll cut it off there.  I will try to write every day, or at least a few times a week, to keep you all updated on our sweet little man.  Thank you for all of your support and prayers.

In the Sacred Heart,
Chasity