dear husband

I’m bad at sympathy. I’m awful waiting hand and foot. And, for most things, I kind of adhere to the “Suck it up” motto. I would have been a 1950s wife fail.

So, five days post-op from sinus and throat surgery, this is what I handed the hubs.

Edited Urgent Memo

Call it a nudge to get back to reality. Tough love, maybe? Or, maybe, a last ditch effort to salvage my sanity.

I know he feels bad, and I do feel sorry for him. But, he can get his own medicine and pudding at this point. I already have to do those things for the two in diapers in the house. And, I can’t even fathom the thought of waking up with him in the middle of the night for medicine in between parties with the other two.

Can I blame my lack of sensitivity and sympathy on exhaustion?

I wish I were better at this. I wish I had the energy to race up the stairs at his every need. I wish I had the patience… and stomach… to hear about all his ails. I wish I had another set of hands to tend to his medicine, snacks, blankets and movies as soon as he wanted. And, I wish I had the time to keep him company while he feels crummy. Cue Best Wife Ever award.

I’m lousy at these things for any longer than the first few days, and the two littles suck any extra time I might have to become decent at such. But, don’t think he is being abandoned.

He is loved. He knows he is. There are pudding, popsicles, ice cream, soup and applesauce to feed an army. I have changed more bloody gauze than I thought my poor, weak stomach could handle. And, I battled with the pharmacy and drove one and a half hours yesterday to ensure he did not run out of this pain medicine in the middle of the night.

So, even though I can’t bear to change any more gauze or hear about his clots or mix up another cup of meds, I will always take care of him. He’s in good hands – extremely sarcastic hands, but it’ll do.

a little cheese with a lot of whine

I’ve had a difficult time writing this week. Not for a lack of things to write about, but, really how to put these thoughts into words without leaving behind a garble of whininess. There is no guarantee this entire post won’t be littered with such. In fact, it will be. Because writing it down always make me feel a smidge better. Reader be warned. Bring on the whine.

I’m having a pity party this week. I’m tired and overwhelmed. And, if I have to endure one more mega meltdown from my toddler this week, especially in public, well, I might just join him. Cue dual temper tantrums in Target, Aisle 5.

It’s been a dizzy couple of weeks between discussing Everett’s need for a new helmet, a diagnosis of his sensory aversion, and various other family stresses. And, this week has just been the cherry on top.

We started the weekend traveling with a snotty, feverish sick baby. Not much of a break there. Zero sleep as well.

Enter Monday, and I decided it would be a brilliant idea to take my miserable baby and defiant toddler to have the oil changed on my car. Good thinking, Mom.

They estimated it would take an hour and 15 minutes to have the oil and maintenance done. Not as fast as I would like, but we could make it work. It was overdue, and it had to be done. The first hour and a half were stressful, but everyone had managed to stay content-ish throughout. When an hour and 40 minutes passed, Austin’s time was up. He lost it – over nothing. He threw a fit right there in the middle of the dealership. He screamed and cried and tried to hit me repeatedly. And, I had nowhere to go. It was raining outside. There was no reprieve inside. And, the dealership had basically kidnapped my car.

While hauling the stroller, holding back tears, carrying Austin and restraining him from smacking me in the face, I located the nearest technician begging him for a status on my car. He swore it was almost done. Just a few more things. “Hurry,” I sputtered. “Hurry.”

After two hours and 15 minutes of waiting, the car was ready and parked in the rain. Awesome. The manager apologized profusely and took a significant chunk off our bill, hoping it would ease some of the “distress.” I sincerely hope the rest of the customers who had to witness Austin’s performance received a comparable discount. It was an ugly, ugly sight.

On the way home, Austin fell asleep in the car just before arriving home. I didn’t have the strength to deal with his wake-up, so I just drove. And, drove. And, drove. Eventually, Everett fell asleep, too. For one hour, we continued to drive in the pouring rain, while I tried to refuel my patience and energy. It didn’t last long. Everett was the first to wake. By the time, I opened the car doors at home, both boys were screaming in unison. Happy Monday.

Tuesday was a poor report from the occupational therapist. Everett is farther behind on tolerating food than she previously thought. He is still young, but he’s going to have quite the uphill battle.

Wednesday, the hubs had surgery first thing in the a.m. to correct his sleep apnea. Basically, it’s a miserably uncomfortable surgery and recovery that included a tonsillectomy,¬†uvulopalatopharyngoplasty, endoscopic sinus surgery, nasal septal reconstruction and turbinate reduction. Yeah… he feels as awful as it sounds. But, they hooked him up with some excellent cocktails. See you in a month, honey.

And, this morning, after an all-nighter full of “quality” time with the kiddos, both boys had well checks. Shots all around. A referral for Everett for Synagis vaccines. And, let’s top it off with an ear infection for him, too.

I am done. I don’t want to know what Friday, Saturday and Sunday hold. Can I just pull the covers over my head, enjoy a glass of wine and call it a week? Or, maybe call it for the next two weeks because I’m not a fan of what next week’s schedule is stacking up to be either.

How does this whole “call in sick” thing work for moms?

Pity party, party of one. Would you like some cheese with that whine?

more than a little picky

aversion

Everett has a sensory food aversion. It’s not real severe, but it’s there. And, it will be a long, slow process to overcome with the occupational therapist. I can’t help but feel my Everett is being picked on. If it’s not one thing, it’s another.

On the drive home, I started mentally tallying all the obstacles he has faced in his short little life:

Two abdominal surgeries, NG tubes, loads of medications, open heart surgery, reflux, physical therapy for torticollis, plagiocephaly, the helmet, most likely another helmet, and now a sensory food aversion.

Then, I ended my pity party because, really, there are far more things to be grateful for than not.

I am thankful he is home in my arms. I am thankful it’s not his heart that brings us to the hospital this time. I am thankful he is healthy. I am thankful for his smiles and that he is happy. I am thankful that he can hear the “I love you’s” and sweet lullabies we sing. I am thankful he can see the wonders of this life and how his older brother delights him. I am thankful he has the voice to laugh and cry and say “Ma Ma” – and, eventually “Da Da” ūüėČ I am thankful he can roll and scoot to explore the world around him. I am thankful he can feel my kisses and snuggles. And, I am thankful he can take food through his mouth even if he’d rather not.

I am thankful he is ours.

While today I am thankful, that doesn’t mean I won’t feel frustrated or upset tomorrow or the next day or the day after. I’m only human. Each day we have a choice. We can feel sorry for ourselves, or we can focus on our blessings. And, some days we just want to feel sorry. Some days we need that pity party. But, for me, that day is not today.

On a day that I didn’t get the answer I wanted, and I would much rather pout, I give thanks instead. I am thankful.

happy heart day

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*Thank you to a special friend for the inspiration for the title of this post. It seemed too perfect.

Continued from six months of living¬†and i’ve never liked dominoes

Two days home from discharge, and we knew something was really wrong. Everett cried nonstop. He was pale. He was sweating through his clothes and mine. And, his breathing was increasingly faster. These were all symptoms of his heart failure. And, he had maxed out his medications. We knew at this point, he wouldn’t be making it to our goal of four months without the surgery.

We moved his appointment up with the cardiologist from Friday to Tuesday. They did an echo, and things had changed. To everyone’s surprise, his heart was deteriorating faster than previously estimated. He needed surgery soon.

Everett was sent immediately to the  Cardiac ICU, where he was started on strong IV medicines. The plan was for him to stabilize for surgery the following week. The week was filled with new monitors, new medications and uncertainty. The Saturday before surgery, he spiked an unexplained fever, and we were no longer sure if he would be able to move forward with the surgery. If he still ran a fever on Sunday, we would have to discuss our options. But, God provided a miracle, and by Saturday night, he was already fever free. It left as quickly as it came on.

We didn’t sleep the night before surgery. We both stayed at the hospital, and I stayed in the room with Everett. Early morning came, and the nursing staff prepped him for surgery. As the sun awakened outside his room, sun rays and peace filled that little room, and I knew God would be with this child today. And, then, it was time.

It’s an odd experience handing your child over for open heart surgery, feelings of shock, disbelief and terror. As soon as they rolled him away, I broke down. I heaved and sobbed an ugly, ugly cry. Philip and I just held one another, praying for our sweet baby boy. The surgery lasted several hours. Family and friends surrounded us that day, praying for our sweet Everett and keeping our minds from wandering to the “what if” place. I am forever grateful to all of those people.

We received updates throughout the day, but the relief came when the surgeon appeared before us. He had finished, and things looked to be successful. But, his valves were in rough condition, and only time will tell if another surgery is needed down the road. We learned that surgery was only half the battle. The 48 hours following would be critical.

We were able to see him soon after surgery. I knew he would look rough, and I had prepared myself. But, nothing can really prepare yourself to see your two-month-old fresh from open heart surgery. As the nurses busied around him nonstop, I stroked his tiny hand as he lay there so small and helpless. Several minutes passed, and I needed air. I left the room, fell to the floor and sobbed my eyes out.

Philip sent the rest of our family away for the day, after I informed him that if anyone else was going to cry in the room with Everett then they were not allowed in. I was not strong enough for anyone else that day, and I just couldn’t bear it.

A day after surgery, Everett had already exceeded the surgeon’s expectations. He was off the pacemaker and only required minimal amounts of medications. There is no doubt that he is a fighter.

Two days after surgery, I was able to hold him. And, boy, did I hold that baby. The rest of the time in the hospital, I rarely left his side. The nurses would constantly remind me to stay hydrated and urge me to go eat. But, I was with my heart warrior, my little miracle, and I wasn’t going to let him go.

holding E after heart

And, on the third day, Everett smiled. Not a “Was that gas?” kind of smile, but a full open-mouthed grin. There was color in his face, a light in his eyes, and a smile on his face. The Lord had blessed us.

After surgery smile

Within a week of surgery, Everett was discharged home. And, this time, it was for good.

These past six months have still been filled with struggles, but more so, there has been joy. The joy of being together. The joy of overcoming such huge hurdles. And, the joy of appreciating and loving one another.

God has indeed blessed us with a beautiful mess.

i’ve never liked dominoes

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Continued from six months of living

When we first learned of the diagnosis, we cried a lot, and asked God, “Why?” After a particularly difficult last couple years, we couldn’t understand why we were not invincible to this pain, or given a free pass complete with a miraculous cure for our child.

At the cardiologist appointment, we had discussed Everett’s weight, and, still, he was not at his birth weight. Knowing what our child had to accomplish in a few months, I immediately stopped nursing and started pumping, needing to know why he wasn’t gaining weight and what he was actually taking in. And, I got my answer – an ounce. Total.

Thus, began the first inkling of a problem. I pumped overtime to build up my supply, in hopes that at some point Everett would take normal bottles. But, it took lots of coaxing and tears for him to finish the single ounce.

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And, then the first domino fell. It was late. Austin was in bed, and Everett was extra unhappy this night. We rocked. We walked. We sang. We fed. We swaddled. And, still he screamed. The hubs decided to change his diaper for the hundredth time in hopes he would settle, but, instead he raced to me with a horrified look on his face. He removed Everett’s diaper, and there it was… a hernia… on our three-week-old.

We immediately called the pediatrician who asked us “if we could push it back in.” Uh, push it back in? Negatory, doc. So, off we went to round one at the ER. The doctor confirmed it was a hernia and tried to reduce it – aka shove it back in – with no luck. At this point, he made a phone call to discuss surgery options at its downtown hospital. We waited… impatiently… for a decision. Finally, the doctor returned and decided to try again, motivated by teasing from fellow colleagues who couldn’t believe this doctor couldn’t reduce a hernia on a three-week-old. That’s the kind of care a parent can only hope for, right? He was successful this time and sent us off with information to set up a consultation with a surgeon.

The next morning, Friday, a consultation was scheduled for the following Wednesday. Between a screaming baby and having to reduce the hernia every hour or more, this seemed a lifetime away. That night, things were bad. Every 15 minutes, we had to reduce it, and Everett was inconsolable. Feeling helpless, we headed back to the ER, except this time we went to the downtown hospital where we knew they could do surgery if needed.

We waited and waited, terrified of what horribly contagious diseases our heart baby could pick up from the overcrowded ER. When we were finally seen, the doctor brushed us off, unsure of why we were there. Apparently,¬†if you can reduce a hernia – no matter how often it pops back out or how much your child screams about it – then there is no rush. And, Wednesday was soon enough, he told us. Right…

That weekend was long. Everett cried a lot, and, at this point, began screaming when we tried to feed him and was progressively breathing faster. There we were with our newborn, not knowing how to care for this fragile child, but doing the best we could.

Relief came on Monday when my dad used a connection to get us in with a pediatric surgeon that same afternoon. The surgeon was excellent, and he worked out of a different hospital in town. The hospital we now love. Surgery was scheduled for the following day.

To say we were nervous would be an understatement. Ideally, a hernia repair would follow a heart repair, but it couldn’t wait. Everett’s cardiologist was hopeful his poor eating could be attributed to the hernia, and this could potentially solve our problems. The surgery was a success despite running slightly over his projected time. He was discharged in the morning with several new medications, a diagnosis of reflux, and instructions on how to create high calorie bottles.

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Several days passed, and we found ourselves nowhere. The domino effect had truly begun. The hubs had left town on business, and that same evening I placed a call to the cardiologist. Everett’s breathing was irregular, and he still wasn’t eating. We were sent to the ER, where he told us he would most likely be admitted, if for nothing else, to place an NG tube to help pack on the ounces. It was a terrifying experience. I cradled my baby, trying to calm him, and cried in the arms of a friend as they placed the tube and listened to my child’s gut wrenching cry.

After struggling to find an open flight, Philip arrived the following morning off the first flight he was able to book. One day turned into two, and two into three. Everett not only fought feedings, but now began vomiting most of his bottles. The first GI doctor saw him on day two and promptly diagnosed him with a food allergy, and that was that – this is about the time I officially chunked the pump. Still he vomited on the new formula, and nothing changed. The next doctor took a closer look and ordered an upper GI scan. And, that’s what was needed.

Everett was diagnosed with an intestinal malrotation. Another surgery. And, this one was urgent. On day five, at five weeks old, he underwent his second surgery, and, again, we were hopeful this would solve his feeding issues.

We lived day to day, switching between the hospital and spending “quality” time with our other son. If I was with Everett, I missed Austin. If I was with Austin, I missed Everett. We were tired and not getting the response we had hoped for with Everett. He saw an OT every day to work on bottle feeding, but most feedings were administered through the NG tube. By day ten, we were done. It felt like nothing was changing and nobody cared. We knew something was not right, but it was hard to express that when doctors dropped by haphazardly and only stayed two minutes to answer all your questions. And, that’s when I lost it.

I threw a fit. I let it out. Everything that had been bottled up, nodding and agreeing, and trying to remain calm about the hell my son was going through, came out. I wanted to talk to Everett’s doctor. No, not the doctor on call, his doctor. A nurse tried to play interference, and I explained to her that we were done. There was no reason for us to be here because it felt like nobody was doing anything and the doctors were not working together. We had both dropped the NG tube multiple times. We had been trained on the pump. We were sitting and waiting and nothing was happening. We had voiced concerns but they were always written off. So, why are we here, with no comforts of home, trekking back and forth from one child to another? Why are we here if nothing is going to change?

They did get me on the phone with Everett’s doctor, and I cried, and he apologized for the way things were going (p.s. I really do love E’s doctors and they are fantastic). The next day, there was a new plan – something that actually seemed to finally make a difference. He was vomiting less and appeared to be gaining a little weight. On day 14, Everett was discharged with the NG tube… only to return three days later. This time to the Cardiac ICU.

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Continued Happy Heart Day