How To Spin Breastmilk

Yes, this post is titled "How To Spin Breastmilk".  Weird, I know.  What does it mean to spin breastmilk?  Spinning breastmilk is a process that removes the majority of the fat from pumped breastmilk.  The "how" is important, but I sure the more pressing question you may have is "why".  Why in the world would anyone want to take the fat, the good stuff, out of breastmilk?  There may be more than one answer for this question, but for us it is answered with the word chylothorax.

Ok, so what is chylothorax?  It is a condition that results in fluid building up in the space around the lungs because of leaking lymphatic ducts or drains. The lymphatic system has hair-like structures that run all around the heart area and carry fats to where they need to go in the body.  During Teagan's surgery, those drains were challenged by both the Turner Syndrome she has and the surgery itself.  That means she has leaking into her chest around her lungs when she eats milk with fat in it.  It is like a garden hose with a bunch of holes poked in it.  Turn the water on, the water leaks out.  Same concept.  Put fats into her body, they will leak out and in her chest space.  The solution?  To turn the hose off, or stop giving her fat in her diet.  Say what?  How can you even do that?  Don't we need fat?  The simple answer is yes.  We spin the breastmilk to remove the type of fat that travels through the lymphatic channels and replace it with other fats that can be absorbed through the blood. 

Teagan is battling chylothorax for her second time, the first being after her first open heart surgery.  We knew to watch for it because she is at high risk for developing it, and when it came we were quick to treat it.  Treatment is a standard 6-8 weeks of fat-free diet, whether skimmed milk, fat-free formula, or TPN.  Teagan has yet to tolerate any formula, even the hypoallergenic types, and TPN is not a super optimal choice.  So that leaves us with skimmed breastmilk.  I wasn't ready to give up giving her the best otion in nutrition, either, which is breastmilk if at all feasible.

So there's the "why".  Like I said, there may be other reasons to do it, but this is ours.  Next is the "how".  When we were inpatient, the hospital used a centrifuge to spin my breastmilk to less than 1% milk fat.  Because Teagan struggled so badly the first go around with chylothorax (even the oils that shouldn't cause issues did!), we need the lowest fat % possible to ensure she heals.  So it was time to go home, but we needed to figure out how to skim the fat out of the milk.  The hospital has a centrifuge they aren't using but after trying hard to borrow it for the 6-8 weeks needed, they emphatically said no for liability reasons.  So where did that leave us?  We thought of buying a centrifuge but they are expensive and that was money we just didn't have.  I had heard of using a washing machine to spin it, and our incredible lactation consultant had as well.  She had taken the time to learn and try the method out lined here.  She had drawn up step-by-step by step instructions on how to do it, sewed tube-like sleeves, and encouraged me as I learned the process over many tears.  I was ready to give it a go.  I didn't have a choice and my back was against a wall.  Teagan is worth it.  But wait.  I didn't own a top loader washing machine, the type you need to do this.  God provided, twice over.  :)  I was now the proud owner of two washing machines parked in my homeschool room for the sole purpose of spinning milk.  The hospital was ready to discharge us.

WHOA!  Say what?!  I quickly reminded them that I had never done it this way, only using the centrifuge, and through tears poured my heart out to the cardiologist with my fears that I would screw up and kill my sweet girl.  So we waited a day and I worked on it overnight.  I had it down, and the test confirmed that I was spinning the milk to the same levels or close to what the hospital was spinning it to.  We took our baby girl home and I spun away.

Let me tell you up front...this is not for the faint of heart.  Even 8 kids deep and two open heart surgeries under our belt and by day 2 I wanted out, BAD.  It took me literally all day to spin enough milk for Teagan.  I couldn't spend that much time on it and still care for my family, much less keep up with the demands of Teagan's care.  Long story short, I have gotten better at it and while it is still time consuming (about 3 hours a day) it is a lot easier and quicker than it was.  As of today we are just over 3 weeks deep of spinning milk at home.

So here is the meat.  The "how".

Start with a top-loading washing machine.  It has to have an agitator and it has to load from the top so as to keep the milk separated when the agitator stops spinning.  These are ours.

Next, take a 60mL syringe (we also use 35mL) to draw up cold breastmilk to be spun.  I have found that my machine allows me to use about 33mL per syringe.  I fill all of the syringes at the same time and cap them with the orange caps that come with them. 

Place one syringe into each end of the sleeves.  Make sure that the orange capped end is loaded pointing toward the opening.  Otherwise you will not be able to skim the milk correctly.  These are cloth tubes that our lactation consultant had sewn for us for this purpose.  I tied them in a knot in the middle and can put one syringe on each side of the sleeves.  I secured them at the bottom with a safety pin.  I have also seen pantyhose used instead of sewn sleeves.

We removed the agitator from the washing machine.  The washing machine we use is designated for spinning milk and we do not use it for our clothes, so we had this luxury.  You can do it with the agitator left on, as well.  It MUST be a top loading machine.  A front loader doesn't typically have an agitator, anyway.  I tied the loops I had created in the middle of the sleeves over the agitator and tighten them.  Set your washing machine to the spin cycle ONLY.  I found that I needed to run our spin cycle twice, for a total of 16 minutes, to get the milk adequately separated.

This is what the milk will look like when you take it out of the washing machine.  The milk will be closest to the plunger, the skimmed milk will be closest to the bottom.  At this point you can put the syringes in the refrigerator standing straight up and down to firm the fat.  I didn't find it to make much of a difference in the end.  Slowly push the plunger down until to get very close to the creamy fat line.  This will be the skimmed milk.  I then pushed the fat into a separate bottle and froze it to use for later.

This is what skimmed milk looks like.  This milk is around 1% fat.

This is what a bottle of fat looks like before I freeze it.

 You do need to supplement the spun breastmilk with other fats for health reasons and for proper braing development.  Teagan gets 3mL of walnut oil three times a day, as well as 3mL MCT oil three times a day.

What Is Turner Syndrome???

I have been promising an explanation of what Turner Syndrome is for what feels like forever. February was Turner Syndrome Awareness Month and I didn't mention it on the Facebook page.  Not that I didn't want to.  I just couldn't handle the questions.

See, Turner Syndrome is one of those syndromes with a lot of "we'll see" and "it depends", just like HLHS.  I didn't, and sometimes feel like I still don't, have a good grasp of it.  So if the questions came, I didn't think I could answer them.  We met with the endocrinologist Thursday and I feel like I have a little better idea of what is on the horizon.  So here goes.  ;)

Turner Syndrome (or TS) affects 1 in 2,000 females and results from the second x chromosome being gone or only partially there.  It is a random anomaly with no known cause and only 1% of babies survive to term.  Most end in miscarriage, and TS could account for up to 10% of all miscarriages.  So our sweet little Teagan was a survivor even before she was born!

The symptoms and signs of TS are wide and vary greatly.  Someone who has mosaic TS (which means not every cell in her body is a TS cell) would have milder characteristics than someone with classic TS (all cells are TS cells).  Genetics says Teagan has classic TS and endocrinology says she has mosaic TS.  Needless to say we need to get that cleared up at the next genetics appointment.  :)  She does have three different types of cells, but I am not sure if they are all TS cells.

Some of the things common to girls with TS include heart problems, kidney issues, eye problems, dental issues, hearing loss, webbed necking, lymphatic challenges, hypothyroidism, and nonverbal learning disabilities.  They are also almost always infertile, fail to go through puberty, and have an average height of 4' 7".  There are a number of other things that can be included that I am sure I have left out.

There is no clear cut answer as to what will show up with each child.  The things we have seen with Teagan thus far have been a challenged lymphatic system (hence the chylothorax both for the Norwood and the Glenn-she was a higher risk), upturned fingernails, a horseshoe kidney, HLHS, and a short broad neck (no webbing).  I have heard quite a few times that she "doesn't look like" a Turner's girl.  I am quickly learning that the outward appearance is not always a good indicator of TS.

So what can be done?  The thing I mainly think about now are her heart, which is obviously the priority above and beyond everything else.  With her horseshoe kidney came grade 3 reflux, which requires a low dose daily antibiotic and in a couple more months they will see if it has resolved.  Hopefully is has, and it is no longer an issue.  We love the promise of adoption and it is something I personally have always wanted to do, so she would have been raised with that as a mindset regardless and that is an avenue that will be open to her should she choose to become a mother.  She is under the care and watch of many specialists that will ensure all her other systems stay on course and we will deal with them each one at a time if they should arise.  We intend to keep a mainly plant based diet and continue to care for our bodies and hers in a way that will keep some of the health concerns at a low likelihood.  We have no decided on whether or not we will opt to do growth hormones yet.  There are risks involved, though they are downplayed by the medical community, and we just don't know what the right answer for us will be yet.  They start them around age 2 and involve daily injections.  We will see.  We have a ways til we have to decide.

So there you have it.  Hopefully I covered everything and if not I hope I can answer whatever questions you may have.  God knew exactly what He was doing when He knit her in my womb and I wouldn't want her any other way!  :)

 

Short But Sweet

Teagan has begun to bounce back from her second open heart surgery.  She is now able and willing to bat at a balloon, play with her toys hanging above her bed, and flash us brief smiles.

And I...I can finally breathe.  I can relax the muscles that have been wound so very tight for the last 5 1/2 months.  I can stop clenching my teeth.  I can stop waiting for the other shoe to drop.  I can focus on things that don't involve syringes, beeping, and medical terminology.  I can finally let myself think about the future, her future. 

You see, I can now do this because I haven't before.

My life has revolved around the here and now, the today, the procedures and the appointments, the getting through interstage.  I have watched new moms coo over their babies, share pictures of festive family gatherings, post on Facebook about the lastest development typical for children their age.  I have listened to griping from mothers over normal baby things that I would love to be experiencing.  I have stood on the sidelines, living a different life.  A life that involves holding my baby as she fought for her life, learned more medical terminology than I ever wanted to know, argued with doctors over what was the best course of action for my fragile baby, mourned with new friends as their babies became angels.  I have fought for every calorie, sent her off to the OR, IR, and cath lab countless times, spent more time on my knees in the last few months than in my entire life previous.  I have watched friends bail, made new friends with bonds that will never be broken, seen old friends come out of the woodwork to be there for us, and watched an entire church, friends and family rally around us.

But I haven't been bold enough to think of the future.  I couldn't do it.  I didn't have that luxury.

But now, now I dare to dream.  Teagan is out of interstage.  She no longer has a tiny, flimsy shunt keeping her alive and her physiology is more stable.  We can "go there".  I can plan all the things I want to do with Teagan rather than thinking about keeping her alive til the next surgery.  I can think about introducing and showing her off to our church body.  I can plan trips to the beach, to go camping, to visit family.  I can think about her first birthday party, who she will marry, what she will do with her life and how she will leave her footprint on this world. I can rejoice in the sleepless nights that come from being 5 months old instead of silencing monitors.  I can teach her to crawl and sit up instead of hoping she will have the strength to lift her hand to mine.  I can change diapers instead of asking nurses to do it because I cannot manage the plethora of cords and chest tubes.  I am so ready.

Her fight is long from over.  She still battles congenital heart disease, the number one killer of children that slips under our radar far too many times.  She will still need another open heart surgery, catherizations, constant monitoring throughout her life.  There is still so much unknown that leaves a lot of "what ifs" and we have no estimate of life expectancy for her.  She still battles failure to thrive and will have to work hard for every bit of weight she gains.  She still has Turner Syndrome and will struggle with the challenges that presents.  And then there are the side effects, the lingering reminders of her war on CHD.  The therapies needed to get her to catch up developmentally, to eat from a bottle, to knowing how to thrive outside on the hospital setting that has been the home she has known more than any other this entire time.  The questions of what the drugs used to save her life will do to her body in the years to come.  There is still a lot of unknowns and tomorrow is still not promised.

But I can look to the future I had no idea I was avoiding.  I can dream big about all the things that I haven't allowed myself to entertain, just in case. I envision her riding her bike without training wheels, graduating high school, having sleepovers, getting married and becoming a mother.  I imagine reading with her, teaching her as we homeschool, watching her twirl in frilly dresses, yelling at her over the dumbest of things because I am frazzled with her kid antics. 

I am ready.  I am so very, very ready.

And I love her more than she will ever know, more than I ever knew I could love.  She has taught me so much in her short time on this earth than I could have ever imagined.

Here's to tomorrow.

But What's The Point?

I remember shortly after Teagan was born I was on my way home from the hospital and had to stop by the grocery store for something.  I remember the day vividly.  It was rainy, drizzling as I walked up to the door of the store.  I was wearing my oversized green USF sweatshirt and jeans.  My hair was matted to my face from the short walk from car to door.  I was numb, not even realizing it at the time.  Moving like a robot, just trying to get through each day.  I walked through the sliding doors of Publix and the air conditioned blast that hit me made me shudder.  I worked my way around the entrance displays and tried to be kind and smile like I usually do at the people I passed.  I recognized I wasn't myself, but felt like I needed to keep up the facade. Just like any other day, some people smiled back with genuine kindness, some smiled out of forced pleasantries, and some just tucked their head down and didn't even bother with common courtesy.  A couple actually even scowled at my gestures.

It was at that moment everything suddenly seemed surreal, like I was in slow motion.  In that instant it hit me, an epiphany.  No one, not one person in that store, knew the walk I was walking.  No one had a clue that my newborn daughter was in the hospiatl literally fighting for her life, on a ventilator and dependent on machines for life.  Wow.  It never dawned on me as I passed through my days, weeks, months, living my life, smiling at some, rushing past others, throwing my hands up at the guy who stopped at a light he could have made...it never once occurred to me that the people we hear of fighting cancer, losing babies to miscarriage and stillbirth, being left by their husbands with no job and 3 kids to support...those are the people you pass in the supermarket, the bank, the mall.  I was one of those people.  And.no.one.knew.

Needless to say my perspective has changed in the way I deal with people since my little peanut was born.  I have never been a rude person and I always tried hard to be kind, courteous, and let the light of Jesus shine through my words and actions.  Now, though, I see life through different eyes.  You can't battle with your child through a CHD and come out unscathed.

Teagan has been in the hospital 4 separate times now.  I know the nurses, the doctors, the support staff.  I am always happy to see them, to chat and update them with all of Teagan's progress, to futz over her outfits and bows with them.  It is always bittersweet to be in the hospital, but these people are extended family and make being inpatient a little easier.  I have to walk past many rooms to get to Teagan's room.  It is hard not to glance in the rooms you pass, just a natural thing to do in every day life, but you try not to in the CVICU because you want to respect the privacy of those families.  My heart aches as I see the battles being fought, and all too often lost, by our CHD warriors.  I see the faces of parents grieving, tears sliding down their faces slowly or wracking their body uncontrollably.  I see blank stares into space with a freshly born babe in the isolette next to them.  I see parents fussing at the nurses for silly details in their child's care because it is the only thing they can control in this fight against this nasty beast.

I battle PTSD, as do many parents who carry their warriors through this journey.  I haven't been diagnosed, but I don't need to be.  I know.  Some come out better than others, but we all bear the scars.  The smell of the hospital soap when I wash my hands at a doctor appointment, beeps of anything and everything, the veiled suggestive words that translate to "you are going inpatient", hours of consulting Dr. Google because everything needs to be questioned for sleep to ever come.

I get jealous.  I don't get jealous of the moms with healthy kiddos, which is what I would have expected.  I get jealous of the other heart warrior moms.  The ones who go home two weeks after their Norwood.  The ones who post that their newborns are killing 80cc bottles every few hours.  The ones who hem and haw about how their child struggled and are referring to the most mundane things compared to what T has battled.  And I hate myself for it.  I know better.  I know there are others who have it worse, who have had harder journeys than Teagan, who have lost their warriors to this fight.

I don't know why I wrote this post.  I have so many things I want to write about.  Why this?  I don't know.  Maybe there isn't a point.  Maybe there is.  Maybe we should just slow down and love one another.  Maybe we should recognize that people need each other, to be accepted and not judged.  Ever.  Maybe the point is that there is no point.  Take from it what you will.

The Post In Which I Purge My Random Thoughts

Ever wish you could record your thoughts? I have so much I want to write and never enough hours in the day to sit down and write. I don't have a whole lot to say right now, the moment when all the kids are happy and entertained, naturally. And so I will babble.

I haven't gotten a picture of all of the kiddos together yet. That is really strange for me. I am a picture person. If I had to pick one materialistic thing in this life it would be pictures. Things change so quickly and pictures are my love. So it makes me wonder why I haven't gotten that coveted picture yet? I don't know. I am going to. My friends made THE best shirts for my kids and I have every intention of shoving my laundry to the two ends of the couch and taking a picture of the kiddos. Now to get them all clean and presentable at the same time.....

Teagan's crib mattress is being delivered today. I haven't set her crib up yet, and only last week ordered the mattress so I even could set it up. Now this I do know why I have drug my feet on. I used every excuse....I was too tired before the pregnancy ended, I needed to be at the hospital after she was born....truth was I couldn't bear to put it up and then lose her and have to take it down. I only prepared for the weeks, days, ahead. Even now I am still doing that. I only know the basic concept of the Glenn, not the intimate details. I am just not ready for that yet. Anywho, it will be here today and I will joyously set the crib up, the bedding will be put on, the hangings will be mounted on the wall. There are several things that people have sent for Teagan that I cannot wait to hang.  I am sure I will post pictures on Team Teagan on Facebook.

I love the packages and cards we get for Teagan. The messages fill me with hope and encouragement. The packages lift my spirits, not even because of the "stuff" in them but because everything sent is going to be a cherished reminder of this journey. I think we will venture out to the post office today....

Fenugreek is the bomb. It helps boost milk supply (so does a bit of beer! Haha!), and I am needing a serious boost right now (and a beer!). Between the incredible stress, the days of not eating correctly, the 4 month slump that I always have....fenugreek time! I could do without smelling like a maple syrup bottle, but it could be worse, I suppose. I hope it helps like it always has in the past. I hate pumping with a passion, but I am so beyond thankful that I have a supply at all. Teagan needs this. I want to quit. I want to throw the pump at my husband's head. I have idea why at him, other than the fact that he can't pump so I am mad. Haha. Maybe that isn't so funny. I need to stop thinking so violently.

Did you know Teagan means "little poet" and Kelly means "warrior maiden"? I intentionally wanted a strong middle name, but man does her name fit her perfectly. She is such a feisty little thing and yet the sweetest, softest little nugget.

I am so behind on emails. I read them and then respond in my head and totally forget to respond. I should do that....

My house is coming together. It is slow and painstaking and there is a lot I still need to purge. We have so much junk! Not even stuff worth giving away, just junk! I cannot wait to get through the stuff and reclaim my house...to feel like it is my home! I have managed to plow through all the tubs (we store hand-me-downs for future wear in tubs), regained partial control of our couch from the laundry pile, and my school room is slowly but surely becoming functional. I think I may have to post pictures when we are done for the simple fact that I have to document it....it probably won't last! My inbox, on the other hand, I am chalking up as a loss.

I need to get back in the Word. I have been sneaking my Bible reading in here and there on my phone as I can, but it isn't the same as sitting down and spending time with my Savior. What a refreshing time that used to be.

My 2 year old is a stinker. He says the funniest things. Last night I was refilling Teagan's feeding pump and Paul said, "She is probably hungry." I said, "Hungry, huh?" He said, "Yes, she is hungry." I said, "So you think she is hungry and that is why she is crying?" Paul says, "Yes, I am saying that is the point!" This is hilarious coming from a 2 year old whose speech is delayed. Brain works fine, people, and sarcasm is well in tact. ;)

Newborn poop is no more fun than adult poop. Just saying.

Teagan gets a Make-A-Wish trip. This makes me giggle because it includes the whole family. I am nowhere near thinking about something like that, but still makes me laugh to think of the logistics behind something like that!

Christmas shopping is going to suck big time.  I have to do it ALL last minute and I can, literally, never get out of the house.  I am going to be limited to internet shopping and whatever prices they have that way.  I hate spending a bunch of money we don't have on things no one needs.  We still do the Santa gig (we aren't heathens because we do, either) so we are trying to figure this one out.  I am excited, though, about getting to make our "Happy Birthday Jesus" banners this year which is a string of large pennants that the kiddos decorate.  I love seeing there hearts through their drawings.

I have been praying hard for a lot of people who I know who have not accepted Jesus as their savior.  My heart is heavy for them and I find myself in near panic sometimes because time is short and they continue to reject the Truth.  Some of these people I have never met in person, all are intelligent.  Being smart makes my heart ache even more because they are able to test the Word and see that it holds up and yet they mock Jesus and ignore it.  ::sigh:: I can't even imagine how God feels to see so many doing this.  BTW, an excellent book for those who want to test the Bible is Lee Strobel's The Case For Christ.  Awesome.  An atheist who set out to prove the Jesus story is false.  Can be a little dry at times, but if you are truly wanting to test it as fact then anything you use will be dry at times.  Once you get the thirst quenching truth though, you can never get enough!

Teagan hates hats and bands on her head.  I crack up every time I try to put one on her and she fights like the dickens to get it off.  I mean, tears in my eyes laugh.  I don't do it often, but I do try sometimes and she still hates it.  :P  I am a mean mommy.

I want to detox.  I have bentonite clay which is the type of detox I can safely do with nursing, but it seems pointless.  I suck down Dr. Pepper faster than you can administer it via IV.  I need it right now.  There is no way I am going to pick now as the time to try to cut out caffeine.  I think the detox I need is bigger than just my physical body, though.  I need to purge the nastiness in my home, my children, my soul.  So easy to get sucked into the negativity of the world that surrounds us.  These days I find it impossible not to just follow the leader, monkey see monkey do.  I had been reading 1,000 Gifts and man it changed my life.  I need to finish that book.  God used it so mightily as we were approaching Teagan's birth.

I have forgotten to be thankful for my children.  When you have a heart baby, your eyes are opened and you count every.single.blessing.  Lately, I have been mired in yech and have been frustrated and disappointed in my children...mostly for just being children!  What a nightmare!  What was I thinking?  Breathe in, breathe out.  Wow.  Even as I type I realize how much of an idiot I have been.  I have taken my eyes off the cross, glanced this way and that, and quickly lost sight of all that I hold dear.  I need fellowship.  Any of my ladies want to come and wear a mask and have a cup of tea with me?  Just kidding about the mask.  Kinda.

I want a loud happy home with handprints on the walls and my pants sticky at the knees from kisses.  I want joy to flood my home, to an example of love and acceptance. I want my kids to behave because they have a heart for Christ, not because I am standing over them with consequences.  I want peace and hope, contentment and humility.  Gotta think on that one.  We had it once.

Speaking of handprints, I need to do Teagan's "birth" handprints in plaster.  Good thing she is still the size of a newborn.  ;)  They wouldn't let me do it in the hospital.  I need to do Lil Momma's one year handprints, too.  My to-do list is a mile long!

We don't vaccinate.  A lot of people do.  We are friends even if you vaccinate.  :)  Haha!  But seriously, people are getting ridiculously peeved because I suggest they investigate before they vaccinate.  I don't understand why any parent would get mad that someone suggest that the medications going into their child's body are safe.  I am not attacking them; just making sure it is an informed choice because I care about them.  I would want them to do the same for me.  I just seem baffled by this.  I am not even cramming it down their throats, just making a suggestion to look into it.  Usually the ones fighting hardcore for the vaccines haven't ever even done any real research at all. Question everything, people.  Everything.

We bought the most awesome gingerbread cookies.  The cookie cutters are cut into the shape of ninjas...they are called "ninjabread" cookies.  Haha!  It is going to be a huge juggling act but I am excited to do them with the rodents.  :)

My husband bought me new sunglasses.  They were sorely needed.  I wish I could trade all my belongings for a new healthy heart for Teagan.  Just a thought.  If only it was that easy.

Which reminds me....there is a new procedure that may give single ventricles a chance at a whole heart.  Teagan is not a candidate because she has other heart issues other than just HLHS, but how exciting nonetheless!

The Post In Which I Let It All Hang Out

I keep saying that I am not going to post again until I have nothing but good things to say. No one wants to read negativity all the time, that is just the truth. But I want to write. I need to write. I also need to document this journey for those out there wanting to see the truth and bare bones of HLHS. This creates quite a conundrum because, as I posted before, CHD is ugly. I just learned that one of my fellow heart mommas who had her little baby boy a week ago was just told they have to post him for transplant. I cannot even begin to fathom the emotions of that....knowing that a newborn has to die so your little one can live, wanting desperately for your little one to live and wondering if that makes you a monster knowing what that means, the knowledge that newborn hearts are not a dime a dozen and that one may not come in time, or at all for your little man. My road with Teagan is hard, very hard, but that is beyond my ability to even comprehend. I can't even commiserate with her. I feel numb to the pain, to the struggles, to the death. Oh yes, death is an almost daily thing in the CHD world. Maybe not daily, but so often that it is hard to remember my life before it. I can't cry anymore. I can't cry for Teagan's fight or anyone else's for the simple fact that I will.not.stop. I know that if I allow myself the indulgence of even one tear, one sob, I won't be able to reign it in. So I am strong, whatever that means. I do my job daily. I take care of eight children from sun up to sun down. I rock into the wee hours with my peanut who just doesn't seem to ever really rest easy. I shove the anxiety and pain and fear to the bottom of my soul because there just isn't time or energy of the luxury of dealing with it today. I draw up the meds, I change the diapers, I squelch the fires between siblings, I feed the kids, I pump, I fend off the well intentioned advice offered, wipe nose, bathe, feed, fake a smile as the baby hands me a toy she thinks is super cool....bleh. This is the part of the post where I am certain many will be thinking, "She is battling depression! She needs help! What can we do?!" Maybe. Maybe I am battling depression. How could anyone in my place not? I have entertained the thought before and considered my options. Medication is not an option, as I am nursing. After taking antidepressants with Scooter's pregnancy and them assuring me over and over that they were safe, and now having lawyers beating my door down because, OOPS not safe....yeah, Teagan doesn't need anything else stacked against her. I am not to a point of danger, worry not. But this sucks. It just does. Going through the motions, counting down the days til interstage is done, knowing that interstage is not going to be over for possibly months....it just sucks.

As I type this my children, no less than three of them at a time, are bickering over everything under the sun. What's that? I should go stop them, lovingly instruct them on how to behave to one another, be an example of a Christ-like character to them? Shoot fire! I can't even bite my tongue to my husband right now. I want to throttle some one every minute of every day. Patience is a thing of the past, which makes sense when you stare at the same four walls every day. The kids haven't been out in I don't know how long so it is really no wonder that they are ready to claw someone's eyes out, either. What's that you say?  One day we will all look back and this will seem like a drop in the bucket, like a short season? No it won't. It will always be the hell we walked through, and I know in my deepest of places that it will always be remembered just as vividly and as intensely as it really is.

::sigh::

There. I got it all out. No, I don't feel better. The anxiety is still in my throat and the tears are still just at the rims of my eye lids. But you know. If you are about to walk this road or know someone who is walking this road, you know. Maybe you can use this to be supportive or to prepare yourself mentally. I don't know. Maybe I was just having a whine fest. But there it is, in all its ugliness to be done with as it will.

Yuck.

{BTW, I am off to squelch the fires raging between my kids and do the rest of my duties....then I will be posting about sunshine and roses. No worries.}

It Was The Best of Times, It Was The Worst of Times

I haven't written in a while.  It kills me not to write.  I want to let you all in on our world, to have a written testimony to what Teagan's journey has been like, to have an outlet to express all the emotions I have no idea how to process.  Writing is obviously not the priority these days, and so my blog has been silent.  Besides, my head is a jumble of yuck and the words just don't come like they used to.

I love having Teagan home.  She is such a joy.  Her smile consumes her entire face and lights up a room.  Last night it was way past bed time and she was so not having it.  I asked Daddy to take over and as he held her she just smiled and cooed at him like it was mid-afternoon.  I thank God that we have her home and live our lives without incessant doctors and intrusions. Those midnight conversations are the moments I cling to while walking the tightrope of CHD.

Because CHD is ugly.  It tears you up as an individual, making you question every decision you are required to make for your child's health. It wreaks havoc on your marriage, even the strongest of couples.  It tears your time away from your children, your CHD baby is 24 hour care.  It is u-gly.

What exactly do I mean?  A little more of a peek into our world....

There are so many decisions to make for Teagan.  There are the basic decisions we have to make that all new parents have to make, a lot of which are no brainers, some are not so easy.  We are a non-vaccinating family (I am not about to debate the issue, so please don't implore me to reconsider) but when Teagan was born I was sucked back into the fear that if I didn't vaccinate she would die.  We had to reevaluate (we are still not vaccinating).  We had to pick doctors before we left the hospital....GI, endocrinology, cardiology, nephrology, early intervention, ophthalmology.  Again, fear gripped me.  What if I didn't get the best for her?  What if I missed one thing and that was the Achilles heel that was literally the death of her?  What if the doctors weren't the problem? What if I wasn't good enough for her?  I am the one in charge of her care nearly 100% of the time; what if I failed her somehow?  I beat myself up and then tore myself down. Then I took it out of my husband.

A marriage is taxed by CHD like nothing I have ever seen before.  Statistics show an 80% divorce rate amongst marriages of special needs children.  I can totally see how that happens!  Before I go any further I want to say that Daddy and I will never get divorced.  Never.  It is a decision and commitment we made a long time ago, so no matter how dark and messy it gets we refuse to walk out of our marriage.  Having said that, it has gotten dark and messy.  We have fought about everything from how to parent the children to who is going to stay at the hospital with Teagan to what to buy for Christmas.  It is a constant push and pull, trying to meet everyone's needs and still remember who you are as a couple, as something other than parents to high needs children.  There isn't enough time or energy at the end of the day to invest in our spouse, there just isn't.  We are still hashing it out daily, but we are a team even on the days we don't seem to be.  It hurts.  It is hard.  But we are one.

My kids are hungry for my attention.  There is not enough to go around right now.  Livi-Lou has cried saying that she is angry at herself because she is jealous of Teagan.  Smash just wants to play a game.  C-dub and Snake are in a tail spin because we have no routine and the stress flares the autistic and bipolar behaviors to the point of mania.  B has busted his hump just to help me survive.  They have all turned on each other and the bickering is endless.  Meanwhile, no one can go anywhere.  We can't do playdates or sleepovers.  My friends can't come snag the kids for a few hours because we have to live in a bubble, in hiding from germs that can cripple or kill Teagan.  All this while we run here there and everywhere to provide Teagan's medical care and the care of the other special needs kids.  Appointments often consume our days, whether it is routine (cardiology, pediatrics), to do therapies for the 2 year old, to change meds for the other two kiddos, a mysterious rash appears, or unscheduled things like X-rays for the kiddo who we just discovered has scoliosis (not a big deal) or ultrasounds for things that pop up like spins bifida concerns.  It is never ending.  And nevermind homeschooling.  We are definitely on an extended hiatus for now.

I am gonna come back to this, but I thought it would be informative to share with you what our days do look like.  Every day is different, but I will use yesterday as an example because, well, it is about the only day I can remember with clarity!!!  Times are relative and more of a guess because the day goes by in a blur.

Up by 7 am, though the last two hours of the night are spent holding Teagan's binky in.  She can't breathe through her nose because she is sick so she is cranky the whole night through.  Wake up with 2 year old in my bed.

Get Teagan changed and dressed.  Refill milk in feeding pump.  Make sure all the other kids are eating and dressed/brushed/presentable for the day.

Pump breastmilk for T.  This sucks, in case you were wondering.  Pity party over.

Draw meds for Teagan.  She has 7 in the a.m.  Give over a bit of time or she will puke.  Give other two kiddos meds.

Love on the sick toddler and baby, wipe noses.

Take a super quick shower (no hair washing or shaving because 12 year old is making sure all is well with T while I am in the shower) and get ready for the day.  Showers don't fit in every morning; this was a luxury. Gross, but a fact of life nowadays.  Pray your clothes are clean, match, and do not end up snotted on before you get to the clinic.

Pack Teagan's diaper bag, get her pump situated, hug all the kiddos, give babysitter instructions, deal with autistic son who is spazzing out, calm jittery bipolar son (several times because it doesn't last more than 3 minutes).

Out the door by 10 a.m. running a little late and hoping they don't cancel your appointment if you don't get there on time.

Realize you are, indeed, snotted on and embrace that fact.

Show up only a few minutes late, at 10:35 a.m. 

Go into room at cardiologists and change a diaper because the cardiologist always makes Teagan poop.  True story.

Fight with T through vitals, nurses cancel echo because she is pissed, get Synagis shot, see doctor, try to remember as I am dancing with the baby the questions I wanted to ask.  Hear all the junk about hospitalizing T that I don't want to hear if she gets even a smidge worse.  Finally walk out at 12:15 p.m.

Run down to pharmacy to fill Teagan's scripts.

Go upstairs to GI because cardiology is worried about her g tube site.

Realize I haven't eaten anything yet and feel guilty spending money we don't have on food on the fly.

Finally walk in the door at the house around 2 p.m.  Pump.

Throw in laundry, refill Teagan's milk, load up children and head out for a sick-child appointment.

Home by 4 p.m.  Get children on daily chores and responsibilities, start dinner and quickly realize I need to call in reinforcements for dinner (fried chicken from Publix it is!), pump.

Dad comes home around 5:15 p.m.  Dinner takes until 6 p.m. to get started even with the chicken being pre-made.  Dance with Teagan through dinner and into evening because she is colicky.  Refill milk in Teagan's pump.

Pump.

Keep laundry going.

Get children bathed, brushed, and ready for bed, meds for the sick kids, tuck everyone into bed, p.m. meds for the other kids.

Dancing with T.  Get her bathed and weighed.  Record sats and numbers for the day.

Change Teagan's feeding lines and refill milk.  Pump.

Draw meds for the p.m. (she has 5) and connect her to her pulse ox for the night.  Dance some more, ask Dad to take her for a bit.

This particular evening was long and rough through the night.  It isn't always like that but the Synagis shot did a number on her.  Didn't help that she was sick.  Sleep at night is always choppy and interrupted.

Amongst all of these things I am soothing Teagan when she is upset, cleaning her up when she pukes, trying to clean and maintain the house, handling anything and everything that comes up throughout the day with the kids, managing a very unstable C-dub and Snake, making appointments and other needed phone calls, washing bottles/syringes....you get the idea.

The point is, the days are long.  CHD life is trying.  It wears on you.  I posted on Facebook asking for prayer because I am so worn down.  I heard a lot of  "God doesn't give you more than you can handle".  I shook my head and sighed.  That couldn't be further from the truth, but it took me years to realize.

God does exactly that.  He gives us more than we can handle for many reasons, mainly so we will learn to lean on Him rather than our own strength through these times.  If I could handle all of this, how easily I would forget Him and slip further and further away from His will and all he has planned for me.  He has used all of this to show me how much I do need Him and his strength, how capable He is to carry me, to humble me and remind me that the body of Christ works as one taking care of the other parts of the body, to break me and remold me into what He is trying to make of me.  He has kept me clinging continually to the cross, constantly in communication with Him through prayer and ever ready to listen for where He wants to lead me.  I continually hear gasps of amazement at "how I do it" and am called things akin to "supermom".  I know I wrote about that here, but it bears repeating that He has given me the grace for which He has called me to.

I can't do this.  I just can't.  I am simply not able to.  I know there are some who would say that I am being modest, humble, whatever adjective you choose.  But the truth is that this is not me doing this.  I am being perpetually carried by my Redeemer.  I am a broken tattered mess and anything good you see in me is Him shining through.  Because CHD is ugly and it sucks...but my God is bigger and that is enough to get me through.