Farewell Breast pump.

DISCLAIMER: This is a bit personal and may be a little TMI for some people.

I have been weaning down my milk supply for over a month, and I think I’m finally done pumping for comfort.  For 21 months I provided human milk for my son each day.  It is the end of an era.  It seems appropriate to take a moment to reflect.

Max received a diet of exclusively human milk (fortified with formula off and on) for nearly his entire first year of life.  To achieve this, I pumped for him 6 to 8 times a day for at least 25 minutes at a time.  That’s a lot of time.  In his second year, Max began receiving a whole foods blenderized diet in addition to a significant amount of human milk.  As the year progressed I began to wean my milk supply.  I heard of crazy hormone shifts and mood swings from other mothers who had weaned suddenly, and I didn’t want to add any more stress to my already stressful life.  So it would be a slow wean.  As an added benefit, I could offer my son a few extra antibodies through the cold and flu season – which would be even more important now that I am working in a hospital and bringing some brand new germs into the house.  I pumped 4 to 5 times a day, then 3 to 4 times a day.  As of April I was actively weaning.  I pumped morning and night for a week. then just morning for another week.  Then one day it was obviously time to quit.

After pumping for my usual half hour, one of my nipples was killing me!  I examined it and I noticed two good sized cracks or broken skin on the outer edge of the nipple.  Eeek! No wonder it hurt so bad.  I wondered how I could pump even once a day with this “injury”.   As I expressed my concerns to my husband, the voice of reason said: “Stop!  This is your body telling you it’s time to stop!”  This coming from a man who has always been in great support of breastfeeding, I knew I had to listen to him.  He was right.

Those first couple of week felt weird.  I’d be doing something in the middle of the day, stop suddenly and gasp.  In a split second I would think:  OMG, I need to pump!  When did I last pump?!  Then in the next split second I would think Oh right, I don’t have to do that anymore.  And when I got engorged five days after later I thought I had mastitis, cancer, a tumor…I hadn’t felt engorged in over a year- I couldn’t remember what it felt like!

At any rate, this era of my life that has come to a close.  When I think about all that time I must have spent pumping, I can’t believe I made it all work.  When did I find time to wash all those bottles and pump parts?  I remember several occasions on which I was just getting ready to head out the door to run an errand or do something fun, when I realized that I had forgotten to pump.  For quick errands I could get away with it, but on other occasions I had to drop everything and do at least a quick pump before I left.

It was tough, being a “slave to the pump”, as they say.  Exclusive pumping is much more difficult than breastfeeding (not that I’m an expert, as I have never breastfed).  It is a route for only the most stubborn and determined mothers.  And no woman need feel like less of a mother because exclusive pumping didn’t work for her.  I would never recommend it to anyone, and I know other mothers in my shoes who feel the same way.  I’m glad I did it, I’m glad it worked out for me and my family, I’m glad I was able to give Max the best nature can offer, but I wouldn’t wish it on anyone else.  I’m happily saying farewell to my breast pump and welcoming the new found freedom.  Now I only have to schedule my life around Max, one factor is taken out of the equation.

The Wheelchair I never wanted

When I first heard about babywearing I loved it.  Cuddling my baby instead of looking at him from stroller distance sounded wonderful to me.  Then I heard and read all about the benefits of babywearing (like this, and this, and this) and I loved it even more.  I talked to moms who wore their babies until they were four or five – moving from a front carry to a hip carry to a back carry.

When Max was born with a brain injury, all those benefits of babywearing were even more important.  Temperature regulation, better oxygenation, improved physical development, better weight gain – these were all areas that he needed all the help he could get.  So I vowed to make babywearing work.  And I put up a serious fight.  When he arched and cried in the wrap, I went out for walks so that he would get used to being in it and calm with the movement of walking and being outdoors.  And we worked for a long time to get him used to it and to the point where he liked it.  We tried different wraps: Moby, Mai Tei, and a woven wrap- and we had mixed results, but we never gave up.  In retrospect I can say his intolerance for being worn had more to do with his slow digestion and the pressure on his tummy giving him a tummy ache than not liking the wrap, but when you have a baby who doesn’t like to be worn or “strolled” it makes life complicated.  As Max’s digestion improved so did his tolerance for being worn.  I heard about Rachel Coleman wearing her cerebral palsy child until she was eleven (probably older!), and I was inspired.  I told myself we wouldn’t get a wheelchair either.  We would have so much more freedom if we just wore Max where ever we wanted to go (hiking, stairs, etc).

But as Max grew to 22 and 23 pounds still didn’t have much sense of balance and ability to hold on, it became harder and harder to carry him around.  Think about it like carrying a 23-pound newborn, or an sleeping toddler.  I started to realize that there were obvious benefits to having a wheelchair.  I started to feel those 23 pounds more and more – in my back and my knees that is…

Then there were concerns of Max’s therapists.  He had a definite preference for his right side and would tend to slouch to that side when supported sitting curving his spine as he sat.  This was a problem and we needed some form of brace to strengthen the other muscles to maintain a straight spine.  They recommended a wheelchair.  It could be designed to fit him and his needs perfectly.  It would support his spine without needing someone to monitor his positioning constantly – it would be a form of physical therapy.

So started the arduous process of obtaining a wheelchair.  There was the fitting with the wheelchair designer.  The therapists discussed Max’s needs and ordered the necessary features.  Then the applications had to be filled out.  The therapists had to justify every single feature and obtain a doctor’s order for a wheelchair.  And finally the waiting.  We waited a month…heard nothing.  Another month…we’ve been approved by medicaid!  One more month…we were waiting for one more piece to come in.  Another month…the pieces were in, they just needed to be put together.

Each week my back and my knees got achier.  My anticipation for the wheelchair grew and grew, and I wondered if I could carry this baby around much longer.  Finally we got the call that the chair was ready and we scheduled a fitting.  Max got his wheelchair and it works great for him.  He’s still getting used to it, and he has moments that he just wants to be held and cuddled like old times, but it is so much better for our family.

I thought I never wanted a wheelchair.  I had great hopes that Max would walk one day, and I figured until that time we could babywear.  And maybe that works for some families, but it wasn’t right for ours.  If Max has always loved being worn it might be easier.  If Max had great head control and I could be confident of his ability to support his neck in a back carry we probably would have done it longer and more often.   I’m not ready to say that this is the end of my “Max-wearing”, but I’m willing to say that I don’t have the stamina to wear him every time we are out and about.  Kuodos to all you mothers who do.  I still believe that wearing is great for babies, toddles, and even older kids.  I admire Rachel Coleman.  But I can’t be her.  That’s not me; my situation is different; my baby is different.  During that last month waiting for the wheelchair, I was pining for it.  The wheelchair that I never wanted became something that would solve all my problems.

Now that it’s here, yeah, maybe I built it up to be more than it really is.  My back still hurts after taking care of Max all day.  I still pick him up and put him down on the floor and strain my knees, but I’m very thankful for the chair.  I think it does offer a lot of freedom for us – I don’t feel trapped in my own home – and most of all that it is challenging Max to grow and strengthen his body in a way that he wouldn’t be challenged if we were to carry him all the time.

It’s another one of those things that is not what I dreamed for my child, but it’s what is best for him at this point in his life.

My Sunshine

“You are my Sunshine” was always a favorite song of mine.  When I was pregnant with Max, I wanted to sing to him so he would recognize my voice and calm to my voice after he was born.  I didn’t really know any lullabyes well enough to sing the words so I started singing “You are my Sunshine.”  I only knew the chorus and the first verse (kind of), but the first verse seemed applicable:

“The other night as I lay sleeping

I dreamt I held you in my arms,

But when I woke up, I was mistaken

And I hung my head and I cried.”

It seemed to express the joy and excitement that I felt to meet this child growing inside of me, and my anticipation to hold him as he looked up at me.  And after Max was born the song became even more relevant to my emotions.  Upon arriving at the children’s hospital NICU, I again wanted to sing to Max to comfort him and assure him of my presence.  I longed to hold him so much.  My arms ached for him.  He was knocked out with narcotics and anti-seizure meds (the only way he would stand the total body cooling), so he didn’t respond, I’m not even sure if he could hear me.  But I sang, for him and for me.  And as I reached the verse, I sang “held you in my arms,” my voice broke, and the tears came.  And there was no stopping them.

Five days later when I finally did get to hold him, the tears started pouring again.  This time tears of joy.  I was finally holding my baby!  Something I’d only dreamed of doing for nine long months.

To this day I can’t hear or sing that song without remembering how I sat on a bar-stool type chair so I was high enough to see into the isolate that held my very sick baby – aching to hold him in my arms.  Hoping that everything would be alright, but knowing deep down that it wasn’t.

And now we are making up for lost time.  At 18-months, I still hold my son for several hours a day.  Unlike any other child his age, Max would like nothing more than to be held in his mother or father’s arms (Grandpa and Grandma work pretty nicely too!) all. day. long.  When my back starts screaming, and my patience for holding a baby starts to wane, I try to remind myself: this is special; other moms don’t get this cuddle time.  And most of the time when I hear that song, the tears start pouring again, and when the verse starts, I hug my Max a little tighter…because now I can.

 

Real food for Tubies!

Our Blendtec blender arrived in the mail last week.  We are ready to begin Max’s blenderized diet!

When Max received his g-tube, I assumed I would pump for as long as I could stand it (my initial goal was 9 months – HA!) and then we would have to move him to Pediasure or another chemically derived liquid formula.  I just assumed that the only way to get food and nutrients through the tube was to feed him exclusively on an unnatural liquid diet.  I first heard about the blenderized diet from a friend who had a child with a g-tube.  She put me in touch with the Facebook group for parents of kids on the Blenderized Diet.  Since then, I have been observing, gleaning, and learning a ton!  The parents in this group had so many great things to say about blending real foods for their tube fed children!  Kids who had trouble gaining weight were back on the  growth charts.  Children who would vomit after almost every formula feeding would quit vomiting altogether.  There were parents of kids with g-tubes, j-tubes, peg-tubes, and even NG tubes!  There were even adult “tubies” in the group.  I was sold!  I knew that real food was what I wanted for Max.

We started small.  We got some jarred baby foods and added some to a couple of his feedings per day.  I was beginning to need to supplement his expressed breast milk with some formula (yes, I’m STILL pumping), so we tried to substitute the formula with baby food.  He started having less problems with gas and was more content to be laying down by himself.  As we increased the baby food that we were giving him and decreased the formula, Max started stooling much more consistently.  I tried a few other foods – homemade pureed beets, blended avocado, and garbanzo beans.  The beets and avocado worked fine (other than having some beet-stained diapers), but the garbanzo beans wouldn’t go through the tube.  So the next step was to get a professional blender.

According to the moms on the blenderized diet (BD) group on facebook, there were two options:  Blendtec or Vita-Mix.  These are the only two blenders that can blend pretty much any food fine enough to go through a tube.  So I contacted the companies to see if there were medical discounts available, and about a week ago our Blendtec showed up!  Surprisingly enough, I have not used the blender yet.  It’s just sitting on the counter looking great, building my excitement.  I think eggs will be the first thing to try.  I plan to blend all the food he would take for couple days at a time and then give him a balanced “meal” at every feeding rather than trying to balance his diet with one food at each feeding.

So we’re just starting.  I have no great recipes or advice to offer (keep checking back, I will post recipes when I get good at this), but I’m excited.  I think this is going to be great for our family and especially our son!

My issue with Dietitians

I met with a dietitian via Skype a couple weeks ago.  And ever since that visit I’m beginning to realize that I have some issue with dietitians.  An underlying distrust or skepticism…I can’t quite put my finger on it.

The History

When Max was about 3 to 4 months old, he started having these retching fits during or after his feedings.  When his tube was installed they also did a surgery called a fundoplication that would keep him from refluxing – as a side effect he wouldn’t be able to burp or vomit until he was older.  So when we saw these retching fits we assumed he was trying to vomit and we helped him to get the food out of his stomach via a “decompression tube” (basically burping him through his g-tube).  So I decided I would like to meet with a dietitian to find out what was causing this urge to vomit.  About two months later when we finally got the appointment set up, we had discovered that Max’s stomach wasn’t moving things through – it was emptying very slowly.  His doctor put him on an stomach/appetite stimulant.  It took a long time to get the dose adjusted to one that worked for him and allowed him to gain weight.  While we were in this adjustment period we met the dietitian.  She was wildly unhelpful.

She plugged his weight into her chart and told me that he was in the 15th percentile and that was dangerously close to being diagnosed failure to thrive.  She told me I needed to get up in the middle of the night (every three hours) and pump if I wanted to keep my milk supply up.  I needed to increase my calories and drink more water in order to make more milk.  All of which I knew.  I’d read three whole books on breastfeeding (one of which was wholly devoted to how to make more milk) for goodness sake!  And she said I needed to consider fortifying Max’s breastmilk with formula in order to get him enough calories to keep him from dipping any further down on the charts.  At the close of the meeting I felt confused and frustrated.  I was doing everything I could to keep my milk supply up, including taking herbs suggested by my midwife (which the dietitian hadn’t even touched on).  The problem was I wasn’t getting enough sleep.  The stress hormone cortisol was running rampant in my body and hindering my milk production.  But even that was beside the point.  Max couldn’t keep down everything I was already feeding him.  How could I possibly feed him an entire ounce more at each feeding?

I talked to the doctors and they were not at all concerned about his weight.  It’s better for him to be small they said as it will be easier for him to move around.  Gaining a lot of weight will only further hinder his motor development.  I felt vindicated and wrote this dietitian off as an “expert” who didn’t understand any child who didn’t fit into her box or her computer program.  And I didn’t initiate any contact for a long time.

Another Visit

Recently I have been researching blenderized diets.  I started by adding baby food to breastmilk to thin it down enough to get it through the tube.  A pretty easy thing to start with while I did more research and got the equipment I needed to go at it full force.  I thought I needed to talk with a dietitian again to see what caloric and protein needs Max had for his age and activity level.  I felt terrible because I know I was short and secretive through the entire meeting, and I didn’t really understand why.  It was a new dietitian, she hadn’t done anything to me.  What was my problem?

Well, she plugged in her numbers and came up with a daily caloric need of 785 for Max with a protein need of 12 grams.  Then she plugged in some more numbers and determined that right now Max is only getting between 595 and 645 calories and only 6 grams of protein per day.  She suggested since he isn’t very active to try to get him between 700 and 750 calories per day.

So I set off to my research.  I figured that if I tried to get him his protein needs that the calories would come since protein is pretty calorie dense.  I had heard about Spirulina being a good plant-based protein source, but I wasn’t really sure what it was.  I discovered it’s a seaweed and the only complete protein that is plant-based.  I also found that I could get it in powdered form which would be easy to give via tube.  I didn’t have a fancy blender that could blend up anything yet, so I was pretty limited in what I could give Max as a protein source, so I figured this was a good option.

A week later we met with Max’s Gastrointestinal Doctor.  After a week of giving Max 1-2 teaspoons of spirulina per day, he was at the 59th percentile and heading straight off the growth chart!  Now I don’t know if the spirulina is just that good, or if the extra calories were just that much more than he needed, but WOW!  I told the doctor about the dietitian recommending even more calories than I was giving Max and he just said, “well, that’s what the numbers say, he’s not going to fit what the numbers say.”  (Did I mention I love our GI doc?)

My Issues

My initial distrust of the dietitian was unfair.  I should have been more open when meeting with a new dietitian, but I had been burned.  And it turns out I was right to distrust – I got burned again.  It’s frustrating to me because the dietitians that I have worked with specifically work with kids with special needs.  They should understand that not every kid has the same needs – that each special case requires a special plan of care.  It’s not good for any child to go skyrocketing off the growth curve.  Maybe it’s because these dietitians are part-time/work from home types and they don’t have the time to really get to know a child’s case and give relevant recommendations.  But I know it’s going to be a while before I contact a dietitian again.  To be frank, I just don’t trust that they would take the time to get to know our case if they did have the time.  I’m a busy mom and I have better things to do than to listen to irrelevant recommendations for my child based on averages.  My son is not average in any way, and he never will be.  Someday I may try working with a dietitian or nutritionist again and at that point I will do my best to do so with an open-mind, but for now I need a break from people who try to put my son in a box – who think they know him based on his labels.  Labels are too easy.

Full-time Mom; Part-time Student

Sorry I’ve been MIA for so long.  My summer classes are really working me hard and wearing me out!  Keeping up with all Max’s therapies and appointments is hard enough with everything there is to do around the house, and adding just two classes to that has brought me to my limit.  And then of course there’s all the summer things that I have to take advantage of while the season is here.  I have all these ideas in my head with no time to think them through and write them down.  Here’s a preview of some things I’ve been thinking about.

Blenderized Diets!  We have started to supplement Max’s breastmilk with real food instead of formula!  The more I research this type of diet the more excited I get.  However, the docs aren’t exactly encouraging…

Babywearing – as Max get’s bigger it’s more of a struggle to transport him.  I’m working on finding a carry that is comfy for both of us.  (But we sure are glad he’s gaining well!)

Motherwart tincture, Diaper Salve, etc – I’m loving making my own herbal remedies!

And many other things that are floating around in my head, too premature to put words to.  I’ll try to get back soon!

DEET for Babies?

We have a great pediatrician.  I’m so happy with how through he is, how well he listens, and how seriously he takes my son.  Having said that, I was shocked at the advice we got at our last visit.

He was advising us on proper outdoor summer care for our baby.  He recommended sunscreen to prevent sunburn and DEET for insect repellent.  I said, “unhuh, okay.”  He said that we should just use a tiny amount of the really strong stuff rather than spraying him all over with the “family” DEET.  I said, “oh, okay.”  And then he said that the herbal insect repellents don’t work nearly as well.  And I said, “oh, okay.”

In my defense, I think I was so shocked to hear him recommend DEET for a baby that I didn’t know what to say.  I’ve been told by people who are not really very “naturally minded” that I should never use DEET, and he was telling me to use it on my baby?!?  But as he was saying it (and as I was saying, “okay, doctor”) I knew I would not use DEET on Max no matter what he said.  I really need to work on this.  I usually trust doctors and I don’t know how to question them.  But with my son in the condition he is, I really need to know why they recommend what they recommend in any situation.  “why do we need this test?  What will it show?  And why is it important to know one way or the other? How is knowing going to change his care plan?” (This is important for every parent, by the way.  Doctors should explain things much better than they do, and give alternative treatments.  Unfortunately, most of them aren’t even aware of alternative treatments because the drug companies give them lots of money to promote their products.  But that’s beside the point!)

So when the doctor told me to put DEET on my baby I just said, “okay doctor.”  When I should have said, “Really? I’ve heard that DEET isn’t advised for anyone, and I would think that would apply especially to babies.”  But in my defense, I wasn’t educated about the alternatives.  I knew that herbal insect repellents don’t work very well, but I didn’t know what would.

So when we got home I talked it over with my husband a little bit.  Mosquito bites are uncomfortable, but not really life threatening (at least in our area, West Nile is not an issue).  And you can keep from getting a lot of bites if you are careful and smart about when you are out.  The more serious concern would be ticks and contracting Lyme disease. So I did some research.

I found an article by an herbalist about Lyme Disease (2009 Pathways Magazine).  Apparently, it is easily treated with an antibiotic in many cases.  There are, however, cases that hang around after multiple series of treatments.  These are cases where the tick passes a viral infection in addition to the common bacteria associated with Lyme Disease.  The antibiotics treat the bacteria, but the viral infection continues to cause symptoms.  So the risk relates to the cases where there is both a bacteria and viral infection.  Andrea Candee (author of the article) recommends Eucalyptus essential oil for preventing tick bites.  Now, granted, she is not a doctor (she’s an herbalist!).  Her recommendation hasn’t been peer reviewed or clinically tested, but she’s a mother who spends a lot of time outside in “tick territory,” so I trust her experience.  Here are her dosage recommendations:

16 oz. of water

1 oz. eucalyptus essential oil

Put it in a spray bottle and spray on skin before spending time outside – stays potent for several months

For longer Protection:

10 drops eucalypts

½ oz. almond or sunflower seed oil

Apply to skin and clothing.

So that’s what I will be trying out this summer for insect repellent.  Nothing is a guarantee against insect bites (just like a vaccine won’t guarantee you won’t get a disease).  We still have to be smart.  We will look Max over – head to toe – if we are going to be somewhere there is a large tick population.  We will try to keep him inside during the really buggy time of the night.  We do want to protect him.  We just don’t want to do it with harsh chemicals.

The Big Green Monster of Jealousy

The other day I was walking back from the grocery store with my baby tied around my trunk (I finally found a “wearing” method he’ll tolerate, very profound for us, as he pretty much hates the stroller), groceries in both arms, when I saw two mom friends of mine (I should say, acquaintances) strolling down the other side of the street with their happy babies in their strollers chit chatting back and forth on their way to the park.  I had seen the e-mail invite for a play date in the park earlier that day, but in addition to Max’s normal maintenance, he was sick, so I knew I couldn’t go.  When I saw these friends walking down the street, the bitter, angry jealousy flowed over me.  As I walked the rest of the way home I thought bitterly, “oh, wouldn’t it be nice if all I needed was my baby and a diaper bag to go anywhere…wouldn’t it be convenient if I could just feed my baby anytime and anywhere…wouldn’t it be nice if my child would be happy and content in a stroller?”

Three weeks ago my sister-in-law had her baby.  I wasn’t happy.  I didn’t rush to give her an emphatic “Congratulations!”  The bitter, angry jealousy came over me and I remember thinking, “well of course her baby is healthy.”

I know it’s normal for parents of kids with disabilities to be a little bit jealous of other kids from time to time.  It’s not like any child deserves to have a disability, and I think our jealousy is our way of sticking up for our kids.  It’s a feeling like “what did my kid do to deserve this when that kid is perfectly healthy.”  But although I don’t think it’s abnormal, I still wonder, “Will it ever stop?”  Will I ever reach a point where I am happy for the son that I have with no comparisons to others?  Don’t get me wrong.  I love my son.  I love everything about him.  But that doesn’t mean I don’t wish that he would smile at me – or look me in the eye – or suck on his fingers – or stick them up his nose.  I see one-month-old babies and get sad because I wish that Max could do the things that they do.  I’ve had all these feelings for 10-months, and I don’t feel like I’m any closer to getting over them.  At times I feel like the more behind Max is (the more milestones he’s missed) the more jealous I get of kids his age.  Will I ever get over it and be content with my life as it is?  Or will I always have moments of jealousy tainting a generally wonderful day?

From time to time, I wonder, if none of this had happened, and Max had stayed the perfectly normal healthy baby that he was in the womb, what would he be like?  Would he be crawling yet?  What would he laugh at, and what would make him cry?  I know this is starting down the road to a dangerous comparison trap, and I don’t want my son to grow up feeling sorry for himself any more than I want to live my life feeling sorry for myself.  That’s not healthy.  I just seem to have a really hard time breaking out of this pattern.

Any advice?  How can I break myself out of a negative thinking pattern into one of joy and gratitude?

Poor, sick baby!

My baby has been terribly sick all week.  It’s just a cold, I guess, but it’s a really nasty one.  It’s so hard to watch him cough and hack and hear all the mucus rattling around in his nose and throat while he works so hard to breathe.  Last week Sunday night is when we noticed it.  He needed to be on his tummy while my husband or I patted on his back so we could help break up the congestion and so gravity would help it out.  I was terrified he was getting pneumonia.  As I sat on the couch with him across my legs, patting his back, my mind raced.  Should we take him to the hospital?  I just wish I had a suction machine to clear some of that out for him.  I knew he had to be as exhausted as I was, but he couldn’t breathe well enough to get to sleep.

He couldn’t keep any milk down and he’d had some diarrhea.  I settled on just taking him in to the doctor, trying not to be the over-reacting mother.  The doctor checked him over thoroughly; he didn’t think it was pneumonia, but did a chest x-ray just to be sure.  No pneumonia.  He sent us home with a nebulizer and had us give him pediatric electrolytes for 24 hours and to add milk back in slowly.  Max’s health improved quickly initially.  When I took him in for a follow-up appointment, I was very confident he would be over it by Monday (the doctor said to bring him in if he wasn’t).  But as the week wore on, it became apparent that he was still struggling with this cold.  He had problems keeping his feedings down when we had him up to his full feedings, and his junky cough wasn’t going away – he still needed the nebulizer at least three times a day.

Meanwhile, this natural mama is exhausted.  Thursday night we had a substitute nurse, whom I had a lot of trouble trusting – resulting in a sleepless night.  Friday night I got to bed late and Max slept poorly causing another night of poor sleep.  Saturday night was another night of poor sleep for baby – leaving me completely depressed.  It’s one of those days that getting out of bed is the last thing I want to do.  I just want to run away and forget that I ever had a child and a husband and a happy life.  You probably think I’m a terrible person now, but if I’m being honest, I have to admit that sometimes I just don’t feel like I can handle it anymore.

I hate the sight of yet another machine in my house to help keep my baby alive.  I hate listening to him cough and rattle.  I wish I could just cough all that junk out for him.  I wish I could make it easier somehow, but I can’t – and I think that’s the hardest part.

I look at this adorable baby, tiny head, overlapping sutures and all, and I can’t help but love him.  Even when I’m at my worst, I love him.  But it is heartbreaking – gut wrenching – to watch him struggle so much without being able to do anything.  The best medicine the US has to offer can’t help him.  I guess that’s why I keep reaching out for alternative methods.

Where’s My Village?

I went to a mom’s support group a couple weeks ago.  The topic of discussion was “Finding Your Village.”  The older Max gets the stronger I believe in the fact that “it takes a village to raise a child.”  It’s hard, though, when you have a child with special needs, to build that village.  I’m sure it’s hard for every mother, but if your child has special needs there are other aspects to consider.

I’ve had plenty of offers.  I think people understand that caring for Max is difficult and draining, and so they want to help.  They say “hey, if you want to go out and get your hair cut, or have some acupuncture, etc. I can watch Max for you!” And I really appreciate that!  The problem is, it’s not that easy.  Max needs to eat every 4 hours, and with his pump feedings it usually takes around an hour and a half.  So anyone who’s going to be watching him for an extended time (even for a short time if it’s not planned right) will need to be trained on feeding via g-tube.  If he’s really fussy he will swallow air as he is eating and then he’ll need to burp during his feeding.  Since he is unable to burp through his mouth due to his fundoplication, he will gag and wretch and sometimes choke until you insert a tube to release the pressure in his tummy.  This is very traumatic to most people – we’re just used to it

Then there’s the stuff every baby deals with of  just not being used to someone new.  A lot of kids have a hard time being left with a stranger, and Max is no different.  This is a good thing.  It shows that he has developed attachments, and I am very thankful for this.  But when Max gets fussy he gets very stiff and tight.  He arches his back so that he is very difficult to hold on to.  So any potential baby sitter needs to be prepared to deal with this and know that it’s not abnormal for him.

Max also needs someone who can be on seizure watch.  And this is difficult because we can’t tell people: “this is what his seizures look like…”  because we don’t know.  We’ve never caught them on EEG.  He makes various movements that look like seizures, but many of them were proven to be CP related rather than seizure activity.  However, we still need to be on the lookout for seizures so we know if his medications need to change.

Taking care of Max requires a certain amount of training and experience.  And some people think that they can handle it, but I bet the training would scare them off.  My sister offered to watch Max so my husband and I could go out for Valentine’s Day.  So I went over to her house one day and demonstrated how to use the feeding tube.  My in-laws ended up watching Max when we went out for various reasons unrelated to my sister’s willingness, but later she told me that she didn’t think she could handle having a child with Max’s special needs.  I think most volunteers would feel the same.

The grandmothers are wonderful.  They have both spent a lot of time with Max and I – watching me take care of Max and taking care of Max while I’m watching.  And I couldn’t have made it this far in his life without them.  Our night nurse is another valued member of our “village.”  It took Max a couple of nights to get used to him, but they get along quiet well now.

The problem is, when you only have three or four people you can call, there’s a decent chance none of them will be available at some point.  And what do you do when that time comes when you haven’t gotten any sleep all weekend and the time that your child finally nods off is the time when you also reach the point of starvation and by the time you finish eating, your child has woken up again?  Who do you call when your house is such a mess that you can’t stand to be there anymore?  That is my dilemma.  Plenty of friends, but not quite sure if they’re “good enough” friends.  Will they be able to handle us at our worst?

I wish I had a handful of good friends who have older children with special needs.  Or a few CNA or Nurse friends would be nice too.  Someone who I can call without much notice who can take over just long enough to give me time to breathe.  I’m sure much of my problem is self-afflicted.  I need to learn to “let go” just like any other mother and trust someone else to take care of my child.  Really, the chances of something significantly life threatening happening is very slim.  I just need to keep reminding myself of that.

Anyone have any insights for me?  How did you learn to “let go” and trust someone else with your child?  How did you build that village of people to support you and help with the care of your child?