It's Time to Make Time...for Me.

 

Eli, or Baby "M", as the world affectionately called him for 9 months, is almost 6 months old.  Some days it feels like an eternity since I brought our sweet son into the world and other days I wonder how the time has gone so fast.  After his birth my husband and I were sent through a whirlwind of emotions as we learned about our son's skin disease and how to care for him.  I spent every day at Eli's side while he was in the NICU for three weeks, working with him on eating, learning how to bandage him, talking to all kinds of specialists, and just holding and cuddling him to show him how much I loved him.  Most days I did this alone while my husband was working so we could still pay our bills.  I slept on a couch every night in Eli's room and rarely allowed the nurses to feed him or change him in the middle of the night.  Nights became short and days became long.  I lived and breathed our son.  He was my number one priority.  That Heparin I was supposed to take for 6 weeks post-partum due to my risk of blood clots-didn't take it.  Never remembered to. The vitamins I had been taking for the last couple of years which helped me keep my own genetic disease under control-stopped taking them. Who had times for vitamins? My son needed me more than my body needed them.  Breakfast and lunch-what are those? I was lucky to eat once a day. And boy did that baby weight drop off me super quick along with another 15 lbs before we got send home from the NICU.  I was physically and emotionally exhausted and honestly thought once we got home that things would settle down, we would find our routine, and I would have time to eat and take my medications like I was supposed to.

Boy was I so wrong.  The stress just increased.  It is incredibly hard to include a daily 3 hour bandage change into a baby's routine when they are eating every 2 hours and napping in between feeding.  We had home health nurses coming three days a week and more times than I can count on both hands they would not give me any more than a hour notice of when they were coming and expected I would have everything ready-bandages cut and pain meds given, and Eli's bath already done...and they only worked until 4pm so I rarely had time to fit in feeding myself a meal before 6pm let alone taking my medication since my husband worked during the day and I took care of Eli and our housework alone all day long.  The emotional exhaustion actually got worse, until Eli was 8 weeks old and started smiling and was able to show reciprocated emotions. But as soon as he was able to interact with me it was time for me to go back to work....not part time, but full time.

Working five days a week, an hour away from home, from 2pm-10:30pm, created a whole new challenge. I didn't have to do Eli's bandage change every day anymore because he was approved for enough nursing hours that we could stagger the hours and me and my husband could split the bandage change responsibility between the two of us.  But I still was attempting to get myself ready for work and do a three hour bandage change before 1pm three days a week. I never had time to eat lunch before I left for work, take my medications, or pack lunch and dinner to take with me.  I could never even remember to grab my vitamin/med bag before I left work to take it with me either. Every night I would get home around midnight and the next day I would rush around all over again.  I was lucky to eat fast food on my way to work and could never forgo the processed protein sandwiches that came with the meals even though I knew I needed to start restricting my protein again since I don't metabolize it and no longer had a human in me requiring protein to grow. 

My schedule was such a challenge and I felt like not only did I not have enough enjoyable time with Eli, but I never had time for myself.  I was neglecting my own medical needs to take care of his. And when I was home, his medical needs were just about the only thing I did get to take care of even with him-we rarely got to just play together or cuddle up together.  I begged and pleaded for a new schedule with my manager but the idea wasn't even really entertained. So when a full time and part time position came open at another hospital and I was told I could make my own schedule to fit my family's needs-I knew I had to jump ship and was hopeful this new schedule of having Mondays, Wednesdays, and Saturday's off and still having my Friday and Sunday mornings and afternoons off would help me take care of our needs better. Number one being my own health.

Since Eli's birth I have been experiencing chest and abdominal pains very frequently and overall my body just feels worn down.  Now, I had lost an additional 20 pounds of my pre-baby weight so I thought I LOOKED healthier than I had in a long time-but I didn't feel healthier.  I called my genetics clinic and requested blood work to check my Homocystiene levels and amino acid levels to see where I was at and how much work I would need to do to get myself back on track.  I really wasn't surprised when my levels came back just as high as they were when I was diagnosed with Homocystinuria 4 years ago after being untreated for 25 years.  I was, however, very disappointed in myself because I had such tight control of my disease prior to getting pregnant and pretty good control over it while I was pregnant.  To put things into prospective-elevated levels of Homocystiene in the blood increases the risk of blood clots which can lead to heart attacks and strokes.  A normal Homocysteine level is 5-15.  Mine was 255.  This increases my risk a lot. And so does the fact that I didn't complete my Heparin treatment after my son was born and had a c-section which also increases the risk of blood clots. 

I once again thought as soon as I start my new hours I would have more time to devote to getting myself healthier again. I wanted to get back to taking my vitamins and medication, eating healthier low protein meals that I prepared with fresh products and not just eat steamed vegetables out of the microwavable bags all the time, and wanted to get into a work out program to make sure I didn't gain back the weight I lost and with the hope of getting back down to my pre-diagnosis weight (need to lost 25 more pounds for that). But Eli has been so uncomfortable all day and night this past month, has been having frequent feeding issues, and my days off have been filled with training new nurses that never worked out until we finally found one we liked this week and are hoping she will get more comfortable and will stick around for a long long time.  I've been gaining some weight back from the stress of not knowing how to help our son lately and the stress of worrying if we would ever find a nurse that would work out for us.  I did finally meet with my genetic doctor for the first time since I was 16 weeks pregnant, so almost a year ago, and he was certainly understanding about why I have "fallen off the wagon" with my disease control but also reiterated to me the serious risk I was putting myself in by sharing about another patient of his around my age who just had a heart attack due to not managing the disease.  He didn't even have to tell me about this patient for me to understand how serious I need to be about getting it together again-this entire past month I've been thinking about it and cry because I know I have a son now who NEEDS me alive to care for him.  What good am I to him if I can't even take care of myself?  And what good am I to him if I died or was in the hospital following a heart attack and had lifting restrictions when I got out?!  For three years I worked my butt off to control my disease so I would have a healthy pregnancy and now that he is here I'm just going to ignore the fact that I could die if I don't eat right and take my meds?! I think not.

 

My genetic clinic nurse and nutritionist are working with my insurance and some pharmacies to reduce the barriers for me.  One barrier being my insurance doesn't cover my life long medication which is $75 per month or protein supplements which are $3000 a month.  I have to take charge and reduce the other barriers which is making excuses and not making the time for me.  That's my goal for this next month-settle into a routine that includes taking my meds, exercising, and healthy meal planning/preparing/cooking/eating.  I think if I can do this I will be so much more effective at having a routine for Eli too and not feeling overwhelmed as if I have no time for anything at all and everything is one giant burden. 


I know all you momma's out there know what I'm feeling and have been there to, or maybe are still there. Please don't forget to take care of yourself. Our babies need their momma's and so do their daddies! Maybe now is the time for you to take time for you too.

What is normal...What is EB?

 

I think every first time parent is constantly battling emotional exhaustion from trying to figure out the most asked parenting question-"is this normal?" Seriously....why aren't children born with a manual? Even with all these phone apps and parenting books and articles-no one can ever be sure that what their child is going through is just a normal phase and not something more serious.  So if it is hard for a parent who has a perfectly healthy baby to figure out what normal is-imagine how hard it is for a parent of a medically fragile baby.  It is insane. We never know what is "normal" baby phases and what is a more serious underlying problem related to our son's disease.  I think we could pull our hair out sometimes and are constantly on the verge of a panic attack out of fear that our child will be hospitalized or that we aren't addressing his needs properly.

 

 

I've always said we have been fortunate to have such a good baby.  And despite his skin disease, he really has been healthy.  He is gaining weight and growing well in length-last pediatrician visit he was 56th% in weight and 74th% in length.  He hasn't had a cold, an ear infection, any respiratory problems.  His vitals are always normal everyday when the nurses check them.  He has an amazing set of lungs...sometimes they work too well;) Since being home from the hospital he has only had a slight fever, which isn't even considered a fever by doctors, twice and it came down immediately with Tylenol.

I would say, though, up until Eli was three months old we struggled with creating a routine which totally jacked up his sleep and our sleep.  We mostly had to take turns sleeping with Eli on the couch-I would take the first half of the night and my husband would take the second half.  He would not sleep in his bassinet or rock-and-play and woke up every 2-3 hours to eat so it gave both of us a chance at getting 4 solid hours of sleep per night.  We also had several days of poor eating at the beginning of November where every day his intake was decreased-26 oz, 23 oz, 20 oz, 18 oz.......I was starting to get worried because he seemed to be having some pain in his mouth and possibly his throat due to the blisters from having EB. But then all of the sudden Eli just took off eating like a champion. We got into a better napping and night time routine thanks to his nurses who worked with him on napping in his rock-and-play. We started experimenting with essential oils at night and learning better ways to soothe Eli to sleep. Eventually by the end of November Eli was only waking up once a night to eat. If he fussed at all but wasn't hungry enough to wake up crying, we would just turn on his mobile music and he would fall right back to sleep.  It was wonderful. So wonderful that we started taking nights instead of shifts.  Eli was happy during the day, always smiling and cooing and even laughing. His skin was looking pretty great too compared to when we came home from the hospital at three weeks old. Bandage changes weren't terrible to get through most days anymore either.

But this past month-our heads have been spinning and our hearts have been hurting for our sweet boy. Starting with "sleep regression"-waking up screaming bloody murder every hour-literally-every.hour. For weeks on end.  Then his skin started taking a turn for the worse-blisters that we haven't seen occur since he was 2 months old.  Big blisters on his feet and thighs.  Wounds on his left knee and right wrist resurfacing and becoming completely raw.  Blisters all over his forehead, on the bridge of his nose, and on the sides of his eye sockets.  Sheered skin on his chest and blisters around his armpits.  

 

So many people contributed this lack of sleeping to the 4 month sleep regression stage that their child went through. But how can we be sure that it is just sleep regression?  Maybe he is in pain from his blistered and raw skin. 

We have even been having feeding problems again.  For a child who has loved to eat and would usually gulp down a 4.5 ounce bottle in 5 minutes and 7 ounce bottle in 10 minutes-most of the time despite the blisters in his mouth-it was heart breaking to see him fearful of his bottle.  We landed ourselves in Cincinnati Children's for a night of observation because of Eli's increased risk of becoming dehydrated due to his EB.  I was concerned that if we did not nip whatever was causing his pain in the butt immediately things would spiral out of control like I've heard happen with other EB kids.

Parents of healthy babies told us he is probably just teething-babies refuse to eat when they are teething because of having painful gums.  Parent's of EB babies told us he probably has blisters in his esophagus and we should get him a g-tube before it gets any more serious.  Is it just teething....or could he really have internal blisters preventing him from eating?

In true Eli fashion, after a full 24 hours of screaming bloody murder at the pure sight of a bottle, once he was seen by the emergency room doctor and given a stronger dose of Tylenol than what we had given him at home twice that day, he gulped down 4 ounces, took a 30 minute nap, and then gulped down another 3.5 ounces and was as happy as could be flirting with the female nurses and attending physician on the unit he was admitted to. Three hours later, he took another 5 ounces. And 5 hours later we were discharged and on our way back home, praying that he would continue to eat. We left Children's with an increased prescription for reflux meds and Tylenol based on Eli's weight change from his previous prescriptions, and a new prescription for a medication to coat the lining of his throat since we weren't exactly SURE about why he was refusing to eat for an entire day. 

It took at least a week before Eli was back to himself. He would still struggle to eat full bottles-wanting to eat smaller bottles more frequently. And he was still waking up screaming bloody murder every 2 hours at night.  Finally after reaching out for suggestions, we started applying natural orajel to Eli's gums at bedtime and being more consistent with applying lavendar essential oil behind his ears and on his foreharm(since his wrists are wrapped) and diffusing a combination of essential oils at night.  We purchased several deep sleep C.D's to play at night so our phones no longer had their batteries drained at night from sleeping next to Eli's head playing music for him.  I thought maybe these parents of healthy babies were right....maybe its just teething.  He does have a white spot on his bottom gums that has been there a couple weeks now and keeps getting whiter.  We also started him back on gas drops because he would scream every time he would pass gas and it was so loud and hard sounding that we knew it had to hurt him. When we had FOUR great days and nights in a row, using this new bedtime routine, I was convinced it was teething and gas pain keeping him awake a night. 

 

I warned my husband about going to his sister's house last weekend to watch the Bengals play the Stealers in the playoffs because I just knew we were going to screw up Eli's sleep again.  Of course, Mommy was right. Like always:) Saturday, Sunday, and Monday night's were torture, again.  We contributed that to the fact that babies like routine and we messed up a good routine we had going on by getting him in bed between 8:30-9:00.  But then Tuesday morning he started having trouble eating again.  He would try to suck on his bottle and cry every time he swallowed. He would only drink an ounce, if that, every two hours.  He would gag on his formula.  I started feeling as if we were being stubborn and ignorant parents by not wanting him to get a g-tube.  The way he was acting made me think he truly does have blisters in his esophagus and it wasn't fair to him to keep having trouble eating and only being able to get any nutrician by oral intake. I thought maybe we should talk to his EB team about a g-tube-as much as it terrifies me and breaks my heart to think about our baby having a surgery and a tube in his stomach.....it also terrifies me that we could be causing him damage by not giving his mouth a throat a break when he physically cannot eat.  Eli was napping in my arms after I gave him some Carafate, his medicine to coat the lining of his throat, and a dose of Tylenol while I was asking his nurse questions about g-tubes.  When he woke up from his 45 minute nap he downed 3.5 ounces in 2 minutes. A couple hours later he downed 6.5 ounces in 10 minutes. I am super convinced this kid does NOT want a g-tube because any time the thought crosses my mind that he might need one he starts showing off and proving he can do without one.  He finished the day at 17 ounces thanks to his first bottle in the middle of the night and last two bottles of the night-this is a big improvement from the last time he was struggling to eat and believe the Carafate and Tylenol may have been the combination he needs to help him. That night he slept really good. Wednesday he ate 32 ounces, napped wonderfully, and slept really good at night too.  Yesterday he ate 32.75 ounces, but refused to take a long nap and was up every 2 hours crying again last night.

Now what? Growth spurt? He had 14 ounces consumed by 10:30 this morning. Teething pain again? Yesterday I felt a sharpness to that white spot on his gums.  Itching? His wounds are moving in the healing direction after three weeks of blistering, refilling, and skin dying off. Wound pain? His wounds are really raw right now until they grow new skin.  Internal blisters? I noticed a blister on the end of his tongue today. Respiratory issues? My husband said he was breathing hard in the middle of the night and me and his nurse noticed it too later in the morning.

Being a parent is a difficult job and leaves us often feeling helpless for our children.  We only want them to be as healthy as possible so it is hard not to freak out and feel like you are missing something that could cause serious harm if left untreated.  That is true with any child. It is even more true with a child who has a serious medical issue.  I find myself stuck somewhere between annoyed at people who think this is only a skin disease our son will grow out of and who suggest what he is going through with his eating and sleeping is just a phase that all babies go through when having developmental leaps-to being annoyed at other EB parents who immediately jump to the worse possible scenerio and makes us feel like we are putting our son in danger of death if we don't get him a g-tube and are torturing our child because we don't give him narcotic pain meds.  I feel like he is probably experiencing a little bit of both sides of the fence and we just have to be extremely diligent to watch for changes in his behaviors and vital signs.  He is a happy, smiling, babbling, laughing, playful boy 90% of the time when he is awake-even on the days when he doesn't want to eat much and after the nights he hasn't slept much.  I don't think anyone, even experienced parents, can say 100% for sure that what their child is going through at any given time is "normal" because every child is completely different-healthy or not.