Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

Family Mission

First, it turns out this is my 200th post on the blog! Woohoo!

Jeremy and I were able to go on a mini retreat over the weekend. It was the annual Marriage Enrichment retreat put together by Marriages of Grace, a local organization founded by an ordinary married couple about seven or eight years ago. The retreat last weekend featured a couple keynote speakers, some smaller talks, time for each couple to be together to reflect on the content of the program, then Mass and a dinner. It was a great program and I encourage anyone in the Cleveland/Akron area to consider attending future events.

Anyway, the small talk Jeremy and I attended was all about dream building and setting personal dreams and family dreams, then figuring out what behaviors and habits are helping you to realize those dreams. That talk got us thinking about our family’s mission, which we have thought about before a few years ago. Then we forgot about it and never developed our ideas. The family mission is a great way to focus our energy and attention when it comes to philanthropy, supporting different organizations, even the activities we get involved in. For example, the couple who founded Marriages of Grace obviously support the sacrament of marriage as part of their mission. They focus a lot of energy and resources toward programs that build up married couples and help marriages flourish.

Jeremy and I thought of a few ideas. I really want hospitality to be part of our mission. I think it’s important for there to be snacks and coffee at a bible study. If you can have a lunch after a church meeting, you should. I would love to be able to spontaneously invite overnight guests to stay at our house. I want to have dinner company often, especially clergy and religious. We met the two Brothers of the Holy Spirit after Divine Liturgy on Sunday, and they confessed to us that they have started a new ministry: the ministry of eating! I want to support them in that by having them over for dinner!

Jeremy and I also want our family mission to include evangelization–Catholic in particular, and recruiting for Holy Ghost parish in particular. We love our parish family and we want the parish to succeed long term. I believe there are many people longing to experience the beauty and mystery of the Byzantine rite, but they don’t even know we are here and that they are welcome to come! It’s not widely known that Byzantine Catholic liturgies are open to Roman Catholics; Roman Catholics can receive sacraments because the Byzantine churches are in communion with Rome. They recognize the Pope as the head of the Church. The format of Divine Liturgy may seem foreign at first, compared to Mass, but it is actually similar. There is a series of petitions, then readings from scripture, then a homily, then Eucharist, then dismissal. We sing “Lord, have mercy” a lot, but other than that it is remarkably similar. I really like that Mary the Mother of God is mentioned so much in the Byzantine Liturgy. She is mentioned in nearly every long prayer the priest says, plus she gets a petition in all the litanies, plus there are at least two hymns for Mary sung during the liturgy. Roman Catholics may think they have Mary all to themselves, but I think the Byzantine liturgy texts mention her way more! So if you have a particular devotion to Mary, check out a Byzantine church! My personal, most favorite part about coming to church on Sunday is walking in amidst all the beautiful icons, gleaming gold in the lamplight, and inhaling the combined scents of incense and frying onions. It’s just perfect. It smells so holy and homey at the same time.

So, those are a couple ideas we have had about our family mission. I’m sure we will continue working out what God’s Plan is for our family. We continue to pray for inspiration and for the Holy Spirit to enlighten our minds and hearts.

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Terminal Again

This time it’s real. This time we have been instructed to choose a time and a place before Agnes chooses it for us. This time the treatments they try don’t work. This time her condition declines and never fully recovers, so she loses something each time.

The doctor told us she talked with all the other ICU attendings over the last 48 hours, and they all agree there is nothing more they can do. The doctor told us we are talking in terms of hours or days Agnes has left. The doctor told us the several episodes of Agnes declining are her body telling us she is done.

Agnes is done.

Done.

Now it’s up to us to let her go. We can try to plan for it by preparing a specific time with the pain-killer medicines needed, all the people who we want to be around, for us to be ready and present and not in the bathroom or down in the cafeteria when Agnes leaves this earth. The longer we wait, the likelier it is Agnes will choose her time, and we might not be there, or our priest might not be able to make it in time, or Agnes might suffer more because the medicine she needs to be comfortable won’t be at her bedside.

So.

How do I announce the death of my child before it happens? Doesn’t that seem weird to anyone else? All I can say is, she will probably go before the weekend is over. We tried to explain to Stephen that the angels were coming to take Agnes to live with Mary and Jesus in heaven, but I’m not sure how much he absorbed. We’ll try again. It was good for us to think about the angels, too. Agnes has one foot out the door, and we’ll stay with her and watch until she leaves with the angels.

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Agnes’ New Record

Agnes came home from the hospital at 1:00pm Wednesday December 11. She was readmitted to the hospital at 6:30am Sunday December 15.

At around 2:00am Sunday morning, the night nurse knocked on my bedroom door saying that Agnes’ pulse-oximeter readings were low and she could not get them to come up, after trying for half an hour. So I went down and Agnes’ O2 sat was hanging in the mid-80’s. I tried a number of things with the nurse: repositioning, suction, more blankets, a different head pillow, flush the suction catheter and try suctioning again, rescue dose of Ativan, soothing touch, turn up the O2, make sure the machines are working by testing the pulse-ox probe on ourselves. At about 3:30am, I decided we should try changing Agnes’ trach tube, to eliminate that as a possibility. I woke up Jeremy to tell him what was going on and he came down too. We changed Agnes’ trach quickly, but she gagged and threw up a small amount. We suctioned out her mouth quickly but the damage was done. After that Agnes’ O2 sats were hanging in the 70’s. I tried snuggling while Jeremy called in to Palliative Care. The on-call nurse suggested giving puffs of Albuterol, which we did, and that didn’t help. Agnes looked peaceful–if the pulse-oximeter wasn’t there to tell us we wouldn’t have known there was a problem. the on-call palliative care nurse recommended we talk to pulmonology, which we did. That doctor recommended we go to the Emergency Department, which we did.

Upon arrival, Agnes continued to maintain sats in the 70’s. When the ER folks swarmed in and took her out of her car seat, she threw up again, a larger amount. At this point it was difficult to keep her in O2 above 75 percent even with aggressive bagging. We were lucky that the ER doc had treated Agnes before and knew about her likely problems. She called up to PICU to let them know Agnes was on campus, and they began preparing a room. Agnes endured a mere 40 to 60 minutes in the ER, getting an I.V. places, blood drawn for labs, and a quick X-Ray. It was very different compared to her previous visit.

We were taken up to the PICU soon after arriving, and the team worked aggressively to get her sedated, paralyzed, breathing on the hospital ventilator in 100 percent O2, totally supported. The X-Ray showed total white out on her left lung, and partial white out on her right lung. Doctors diagnosed chemical aspiration from when Agnes threw up bile upon arriving in ER. This was compounding the initial suspected pulmonary hypertensive crisis that started the whole ordeal at 2am. Because Agnes aspirated bile, she suffered septic shock. Her body shut down: low body temperature, low blood pressure, stopped peeing, no bowel sounds. On top of all this, her abdomen continued to swell with fluid. The PICU team is currently treating Agnes with meds to help her maintain normal blood pressure, improve heart function, dilate capillaries in her lungs to improve oxygenation. They are keeping her covered with a warm air cushion to help her maintain a normal body temperature. They are checking her blood work multiple times a day. She has a foley catheter. They inserted a drain to take off some of the fluid build up in her abdomen; that had drained off more than 500 ml by the time I left this evening. Agnes is still totally paralyzed and sedated, and completely dependent on all her treatments.

I have never seen her this sick. I am shocked at how quickly it came on. I feel responsible for her condition because it was my idea to change her trach at home, which caused her to gag and puke and aspirate a bit of bile. I am slightly reassured by the fact that the on-call docs we talked to would have made us change her trach anyway, but still, I feel in a way Agnes’ condition is my fault somehow. In my head I know we did everything they would have done had Agnes been in the hospital at the start of her ordeal, but emotionally I feel responsible. Perhaps this feeling will pass.

And finally, as icing on the cake, the neurosurgeon is serious about externalizing Agnes’ shunt this time. Because of the drain to take off some of the fluid in her abdomen. It could allow an infection to enter and taint her shunt. So the shunt must be externalized, CSF cultures sent, and reinternalized later. As a VA shunt to Agnes’ heart.

Shit.

So, long story short, Agnes is not yet stable. When she is stable, neurosurgery plans to fiddle with her shunt. The PICU team is also hoping to discuss a number of other procedures that Agnes may require. In other words, we’re probably looking at another three to four week hospitalization. Agnes won’t be home for Christmas.

But on the positive side, I guess Santa Claus flies in to Akron Children’s Hospital on Christmas Eve morning, on the Air Bear medical transport helicopter. That sounds exciting! Then he visits all the units. I know I’m not the only parent with a kid in the hospital over Christmas, but I sure feel disappointed.

I guess we need fervent prayers for Agnes’ recovery. There is so far she needs to come back this time. Agnes needs a miracle.

Mary, Blessed Virgin Mother of God, pray for us. Saint Agnes, pray for us. Saint Maria Goretti, pray for us.

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7 Quick Takes: October 11 “Look at this cool stuff” edition

Linking up with Jen at Conversion Diary. In the interest of sparing you my complaining, here are seven cool things that are totally non-important.

1. DIY tumblr, which I have never seen before today when a page I “like” on Facebook made a link. The lady made a giant squid pillow! I could totally do that.

2. This Russian guy does amazing makeup/beauty work. Most of the models don’t even look like themselves anymore.

3. I’m really excited about this.

4. One of the days I was sitting with Agnes at the hospital during her last stay, I watched PBS on a Sunday afternoon. I watched Joanne Weir Cooking Confidence and she made this soup, Butternut Squash with Carrot Soup. I have made it two times at home in the intervening weeks, and I give it high marks. It is very delicious and not complicated, though it does take a long time start-to-finish. The time is mostly waiting for things to cook, but you do have to plan ahead. It is worth the time, and Stephen likes the soup too!

5. Speaking of soup, I am discovering that I love this option for dinner. I have made several kinds of soup in the past few weeks, and I like that it is fairly difficult to do something catastrophic. I made the squash soup, and a soup with chicken and barley, and a cheesy potato soup with broccoli. I followed recipes for all, but I made some adaptations and they still tasted great. How easy is soup, with crackers and cheese, or bread, or a toasted sandwich?

6. Apparently I’m obsessed with the Dragonriders of Pern books by Anne McCaffery. I read them when I was in high school and I come back to them time and again. I have recently read all of them again except the few that I reread not too long ago already. It is a fascinating world with many compelling characters. There are a couple things I find especially interesting, but I guess not interesting enough to talk about them in detail: 1) there is no religion on Pern and no apparent belief in a Higher Power. 2) there are very few cases of cancers, mental or physical disability, or other genetically inherited conditions. 3) the society is culturally liberal from a sociologic standpoint (no stigma for homosexuality or infidelity), yet “drudges” abound in every dwelling. They do menial, dirty work and are often people with more limited intelligence and aptitude. There is also a very strong caste system, though it is possible to move among the classes.

7. I like this song on the radio right now.

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7 Quick Takes: October 4

Hi y’all. Linking up with Jen at Conversion Diary, as per usual on a Friday.

1. Yesterday in my haste to write a quick blog post before bedtime, I forgot to mention a Cool Thing. Fr. Michael Gaitley asked all of us at the talk to pray for him as he is traveling to Mexico to meet with super-wealthy benefactors with the hopes that someone will finance the translation of 33 Days to Morning Glory into Spanish and then support giving away millions of copies for free. He said this project has recently launched in the U.S. and it has been extremely successful. Like, they printed a couple million Spanish 33 Days, and the books have been available for a week, and they only have a few thousand left. Successful. And Fr. Michael wants to do the same thing in Mexico. So maybe all y’all can pray for him too!

2. And the other cool thing is that Fr. Michael will have the opportunity to see the image of Our Lady of Guadalupe up close and pray with her. And, he promised us that he would pray for Agnes when he sees Our Lady! He really did offer a beautiful blessing for Agnes when we met him last night. I feel more at peace about Agnes’ surgery.

3. I really hope Agnes’ hospital stay next week is brief. I don’t know how I will handle another month-long stay. Last time I started to pull away and feel disconnected and detached from Agnes and I don’t want that to happen again. Although, I will say the one bright side to her going to the hospital is that I can focus on Stephen when I’m at home, and go to bed before 11pm. But those are not sufficiently brights sides to make me long for an extended inpatient visit. A few nights would be more than enough.

4. My big plan for tomorrow is to bake some cookies. I haven’t decided which kind yet. I really like cookies, but those pre-packaged cookies you find in the cookie/cracker aisle of the grocery are just a waste of time. They don’t really taste like anything, they last forever after you open them and that’s no good, they’re expensive, and they don’t even look real. I just can’t bring myself to eat them. The only thing going for them is they are sweet. So, tomorrow I will make lovely homemade cookies! I want to really enjoy my fats and sweets if I’m going to spend calories on that portion of the food pyramid.

5. I grew up with the food pyramid and I will always think of the food pyramid no matter who comes along and shows me a color-coded plate. That is all.

6. Minor miracle today: I got Stephen to take a nap! He was up very late last night with grandma and grandpa while Jeremy and I went to the talk, but he still woke up around the normal time. I’m glad he took a nap like he never does; he really needed it! Plus, I got to doze a little with Agnes as well. Win win win. Wins all around.

7. So I guess some symptoms of hydrocephalus are sleepiness and irritability, which could explain why Agnes is either asleep, or cranky-pants. Nothing I did today calmed her down, except holding her in my arms. Then she would fall asleep, but she woke up again as soon as I laid her back in bed. Stinker. Hopefully the shunt will help her be more even-tempered. Although, I’m not sure how I will be able to handle a more wakeful baby and Stephen both! I guess I’ll cross that bridge when I come to it.

Read more quick takes at Conversion Diary!

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SHUNT

Agnes is getting a shunt placed on Tuesday morning. The neurosurgeon has been following her brain ventricles since she was born, and waiting for the situation to reach the critical stage when it would become unwise to delay further. Agnes has reached that stage. The ventricles in her brain are sufficiently swollen that they are compressing her brain tissues, pressure is building, and her head circumference has grown by a significant amount since the last check up. The neurosurgeon explained that now is the time to place a shunt, since the brain tissue will have a better chance to regain its natural position and limit the amount of lasting damage.

The  surgery sounds fairly straightforward, you know, as far as brain surgery goes. They will snake a catheter through the fatty layer of skin from Agnes’ scalp down to her abdomen. One end of the tube will poke through her skull and into the ventricle. The other end will poke into the peritoneal area of her trunk, where the excess brain fluid will be absorbed into her bloodstream. The surgeon will place lots of extra tubing in Agnes’ abdomen, so theoretically, this shunt can last a lifetime and “grow” with her. However, it is exceedingly common for shunts to require “revisions,” if the valve or the tube gets clogged, if the valve malfunctions, if the shunt becomes infected. In the informational booklet, it seemed like the personal stories ran the whole gamut: some kids needed a revision several times a year, some only needed a few their whole life.

Now, according to Dr. Optimist, Agnes will be in the hospital for one night only. “Unless something comes up.” The usual hospital stay for a shunt placement is one to three nights. There is the possibility that Agnes’ shunt will not be able to drain into her abdomen because the scar tissue from her other surgeries may not allow for the fluid to absorb. In that case, she will receive a new shunt that drains into her heart. This is not preferred because the surgeon can’t put extra tubing, only the correct amount for Agnes’ size. This kind of shunt would definitely need regular revisions to resize the tubing as Agnes grows. So if that ends up being the shunt Agnes needs, that would extend her hospitalization next week. Also she is more susceptible to infections because of her trach. So long story short, I hope the neurosurgeon didn’t hear my mental smirk when he said she’ll be in for one night only. I’m expecting a few nights, hopefully home by the weekend. Wouldn’t that be a nice change of pace, to have a brief hospital stay?

In other news, Jeremy and I took Agnes to see Fr. Michael Gaitley speak at a local Catholic parish. He talked about enriching the faith through devotion to Mary and the Divine Mercy. We got to meet him and he signed our books of his that we have. We also asked him to say a prayer and blessing for Agnes. It was so nice to to hear a holy talk and get a blessing from a holy priest!

I urge you to check out his works. Jeremy and I did the 33 Days to Morning Glory consecration to Jesus through Mary, and I can honestly say that I have never felt closer to Mary and Jesus than I did when I was doing that program. Fr. Gaitley’s whole thing is to awaken the fire in our hearts, fire of devotion, fire of faith, and to evangelize! His consecration program certainly did that for me, and I can see his own fire when he speaks. It was a joy to hear his talk!

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Our Journey to the East

Someone just sent me an email asking what took Jeremy and me to the Eastern Catholic tradition, and as I was writing I thought, “gee, this would make a purdy good blog post.” I hope my emailing friend doesn’t mind!
Jeremy and I had been going to Roman Catholic church, but as you can imagine, every parish has its own “vibe” and the way they do things. So when we moved to Akron, we took some time to shop around to find a parish that had the things we liked, and lacked the things we were happy to do without. We wanted a parish that celebrated reverent liturgy, with a priest who was obviously spiritual and not “tired” of his ministry. We wanted good music, or at least music that didn’t make us want to plug our ears! We wanted a parish where the prevalent mood was one in support of the Pope and keeping with Church teachings. We love the Pope and we wanted to be surrounded by others who do, too. We wanted a parish with a strong devotion to Mary the Blessed Mother. We wanted a parish where the actual church building looked like a church inside and out, rather than like a gymnasium or auditorium with an altar at one end.
So, with all that in mind, we shopped around. We actually have a few friends who worship in the Eastern Catholic tradition so we had heard about it before. The way the Catholic churches shake down is, there are two major branches: the Western (Roman, Mozarabic, and Ambrosian) and the Eastern (everything else that is Catholic). The Eastern Catholics tended to branch off more specifically according to ethnic groups, geographical regions, and language spoken. The Bishop of Rome (the Pope) is still the universal pontiff for everyone, but all the different Eastern Catholic Rites also have their own Patriarchs. And each ethnic tradition has their own Archbishop. There are several major Eastern Rites: Alexandrian (Coptic and Ethiopian Catholics); West Syrian (Maronite, Syriac, and Syro-Malankara Catholics); East Syrian (Chaldean and Syro-Malabar Catholics); Armenian (Armenian Catholics), and Byzantine (Albanian, Greek, Melkite, Ruthenian, Ukrainian and others). All these Eastern Rites are in union with the Pope of Rome, so we say all these churches are “in communion” with Rome. That is why Jeremy and I could just up and decide to go to a Ukrainian Catholic Church! There are some differences in the organization of hierarchy and stuff between East and West that I don’t feel really comfortable discussing, so I’ll move on to the liturgy!
I’m not too familiar with all the Eastern Rites, but each Rite has a favorite liturgy they use for worship. The two big ones for Byzantine Catholics are the Liturgy of Saint John Chrysostom and the Liturgy of Saint Basil. Any Eastern Catholic Church that uses these liturgies for worship are going to be similar to each other. The main difference will be with whichever ethnic language is thrown in. Jeremy and I have learned how to do a couple of the responses in Ukrainian!
This is the biggest difference for me between a Roman Catholic Mass and a Byzantine Catholic Divine Liturgy. The feel of the two liturgies are totally different. The reforms of the liturgy that occurred in the 1970’s for Roman Catholics did a lot to streamline Mass, update the language, and open up some areas for a parish or diocese to do something individual. The liturgy of the Byzantine Rite didn’t go through this reform so there are lots of repetitive prayers and litanies, and the liturgy is almost entirely the same week to week. There are just a few things that change for each Sunday or feast day. I like the repetition. I like that the priest sings almost everything and the congregation sings all the responses. I like all the litanies. The Eastern Divine Liturgy feels mystical to me, with the cool chanted music, incense, bells, symbolic gestures, and icons. I love that we are hit with the fragrance of incense as soon as we walk through the door on Sunday. The fragrance of incense and pyrogies! I love gazing at the beautiful icons of Mary and Jesus and the saints.
I grew up Roman Catholic and Jeremy has been catholic for 15 years, so it’s hard for us to put aside the Roman thing! We still are more in tune with the Roman calendar of saints and feast days. We still pray the traditional Roman Catholic prayers at home. We still really like Latin! We celebrate liturgy at a Byzantine church and we try to incorporate some of the Eastern spirituality into our lives. We love icons and pray with icons at home. We try to remember to make the sign of the cross “backwards.” It’s a process, like any faith journey. And we’re enjoying it!
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What I Wore Sunday: September 8

Linking up with Fine Linen and Purple.

We’ll do this “quick and dirty” as my Ear Training teacher in college used to say. Only she was referring to the sight-singing quizzes, and I’m referring to a blog post. Whatever, apples and oranges.

Stephen and me, in front of the iconostasis at Holy Ghost.

Stephen and me, in front of the iconostasis at Holy Ghost.

Liturgy was fine this morning, except the lady who leads the choir was out sick, so another lady started us on the troparion. But she sings alto so of course she started out with her own part, and all us sopranos were like “…..” so we sang the alto part too because we couldn’t find our way up to the soprano. For me, at first I didn’t realize we were all singing alto because I don’t know the music yet, and when I did realize it, I was stuck in the alto range with the alto notes in my ear and I couldn’t get out. Oh well. Now I know that when Anna leads, I should find my way up to the soprano part ASAP! Today was kind of interesting because in the Eastern Catholic calendar, we celebrate two events today: The Nativity of the Mother of God, and the pre-feast for the Exultation of the Cross which occurs on September 14. I don’t fully understand the pre-feast thing yet, but I’m getting there. Anyway, we sang double stuff today to cover all the feasts. There were even two Epistle readings instead of one! Only one Gospel reading, though.

I finally managed to snag a photo of the interior of Holy Ghost. In the picture you can see the iconostasis, which is the gold screen across the front of the sanctuary. There are icons of major saints on the screen. As you face the screen, Jesus is to the right of the main doors, and Mary is on the left. I believe it is St. Stephen on the little door on the right, and St. Gabriel the Archangel on the little door on the left. The rest of the saints pictured are church fathers such as St. John Chrysostom. Across the top of the screen are scenes from Gospels. The painting on the dome above the sanctuary is an icon of Pentecost, when the Holy Spirit rested as a tongue of flame over each apostle and Mary the BVM. The altar is not in view; it is behind the doors of the screen. The little table directly behind me is called the tetrapod, and it holds an icon for the feast day or liturgical season, and a cross. So there’s a little about Eastern Catholicism for you!

After liturgy we went to the hospital to visit Agnes. My parents were there already, in the midst of their twelve-hours of care. So Jeremy, Stephen, and I just hung out for awhile before coming home. It was at that point that Stephen decided to turn on all his annoying. He did take a brief nap, but he was ornery before, and he was ornery after, and he’s in bed for the night right at this moment and he’s still ornery. I’m choosing to ignore. As soon as I’m done here I plan to grab me an adult beverage and a snacky-snack and chill with some “Storage Wars” or something of that ilk.

I do just want to point out one thing about my church outfit: I’m wearing shoes that are not black Minnetonka Moccasins.

The rest of my gear: Top from Old Navy. Green skirt from an Albuquerque thrift store. Veil I made myself!

Stephen picked out his own duds for church. I was flipping through his (four) nice shirts in his closet and he told me, “red shirt, red shirt.” Then I offered him blue jeans or navy slacks and he chose the navy slacks. Kid’s got style.

Finally before I sign off, the latest on Agnes is she continues to need a bit of oxygen. They did wean her off briefly a couple days ago, but when she gets made, her sats drop and she needs a bit of an oxygen boost. I don’t know if she will come off of oxygen before we bring her home this week. She needs less than she did at the beginning of the week, so it’s already an improvement from where she was. We’ll see. She will hopefully be coming home Tuesday; if not Tuesday, then certainly by the weekend. We’re just waiting on the home care nursing. Praying it all gets sorted out!

Head over to FLAP for more link-ups.

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Recap The Awful Year

Okay, I’m only going to do this once and get it off my chest. But geez louise could something good happen around here? We are due for something positive without even the slightest hint of double-edged swordiness.

Thank you, facebook.

I am going to recap this past year, and I’ll be totally honest with all y’all, it’s going to be a bit of a pity party. I know the people who are in my life already know the extent to which this year has totally sucked ass monkeys, but I’m hoping this exercise will be cathartic and help me to move forward.

May 2012: Our “year” started more than a year ago. We found out we were expecting a baby! A week after that news, we found out Jeremy’s job was being eliminated and we would have to leave Billings, MT. At least his boss gave him plenty of head’s up.

June 2012: Our baby miscarried. We named him Joseph Mary. The worst part was we had just made the Big Announcement that we were expecting so we had to be all like “just kidding.” It was bad.

July 2012: Despite numerous resumes sent all over the nation, no job offers yet. Around this time I started a good habit of walking approximately 2 miles every morning around the scenic neighborhoods of Billings, with Stephen tagging along in the stroller. That was nice.

August 2012: We sold our better car to help finance our upcoming move to a Place that was Yet to be Revealed to us.

September 2012: We put our perfect house on the market and moved away from Billings to Rio Rancho, NM for the sole reason that Rio Rancho was the only place to offer Jeremy a job. I wouldn’t recommend that strategy to anyone. Also in September we found out we were expecting a baby! Because of this, it becomes impossible for me to secure health insurance in New Mexico because insurance companies will not accept new clients with a “preexisting condition.” Such as pregnancy. We resorted to Medicaid and thank God we did. It was one of the better choices we made this past year.

October 2012: Our house wasn’t sold yet, so we were paying a mortgage payment plus rent on an apartment that turned out being more expensive than we had thought it would be. We made some great friends through our church, and that was really nice.

November 2012: Jeremy stoped receiving new assignments in the mail from Magnificat. It was clear that after 5 years as a solid employee, they were terminating his contract without offering any notice or reason. He supposed it must be related to internal company politics. At least they continued to send complimentary subscriptions to our home.

December 2012: We discover that for some reason, it is not possible for us to run the heat in our apartment if we also want to take a hot shower. We may have started noticing this in November, but now it’s really starting to get old. Also in December, we get a solid offer on our house in Billings! Things keep getting slowed down for one reason or another so we don’t actually close the sale.

January 2013: We sold the house in Billings! Whew, now it will slip onto 2013 tax year filings which is actually extremely fortunate. Also in January, Jeremy has a meeting with his boss during which his boss pretty much tells him he is doing a horrible job at work. Without offering any positive feedback or ways Jeremy can improve his performance. I think the complaint boiled down to Jeremy wasn’t kicking enough kids out of the church religious education program. Or something. Sorry folks, it’s the truth. Around this time we realize that we are deeply unhappy and we start seriously considering moving away from New Mexico, but we resolve to give it at least a full year before we decide. Also in January, Jeremy and I join a class at church that will walk us through the process to renew our consecration to Mary.

February 2013: We find out there is Something Wrong with our baby. The perinatologist outlines some stark possibilities and recommends for us to move before baby is born if moving is what we want to do. We reconsecrate our family to Mary. “To Jesus, through Mary!” We need all the graces we can get.

March 2013: Every time we go for a prenatal appointment there is more hard news. We also get all our papers together for filing taxes. At least we don’t have to file a house sale. We also decide definitively to move. Jeremy gives 30 days notice at work and his boss tells him to clear out immediately. I’m paraphrasing. Jeremy’s car needs an expensive repair to make it road trip worthy. We have to sell our piano because we can’t afford to move it again.

April 2013: Taxes are a bitch and a half. We have to break our lease contract to move out now, so we also get hit hard by the management company. They don’t consider losing your job and a medical hardship grounds for waiving fees. At least they agree to let us pay over 4 months and they don’t charge interest. Moving cleans out our bank account. Goodbye savings. Goodbye house sale profits. Goodbye all the generous gifts our amazing family and friends bestowed upon us. Thank God for our amazing family and friends who helped us in our need. We road tripped to Ohio and that was really nice.

May 2013: We moved in with my parents thanks to their generosity. Lots of prenatal appointments for Agnes, with bad news becoming the norm. U-haul over charges for our “u-boxes,” you know, like we can afford extra expenses. We place both our student loans in forbearance and I transfer the last $20 from savings into checking so our check to Costco doesn’t bounce. Thank God I did it in time. At least it wasn’t too difficult to get set up on Ohio Medicaid and they even gave us food assistance. Without those government programs, we would be done for. I don’t care what you think about “hand outs” but I am extremely grateful for those programs. I’m sorry I’m stealing your hard-earned paychecks. Also in May, Jeremy picks up a part time gig as a pizza delivery driver.

June 2013: Still paying off the apartment management company in Rio Rancho. Still banking frequent-visitor points at the hospital. Still trying to find things that are boxed up from the move. More bad news about Agnes. Whatevs, bring it. Agnes is born! Let the fun begin. We practically live at the hospital as Agnes endures surgeries and the complicated recovery. She is “chromosomally enhanced.” I like to think about it that way. I miss Stephen because I don’t get to spend much quality time with him right after Agnes’ birth.

July 2013: I’ve talked about all this stuff in depth elsewhere on the blog. We’re also still paying the Rio Rancho apartment managers $320.12 a month for 4 months. At least Agnes’ care is covered under Medicaid. Thank God for Medicaid. Agnes does start improving which is really nice. It must be because of all the wonderful prayers everyone sends up for her!

August 2013: Our year is still rolling. At least this month was our last payment to the Rio Rancho apartment. Now maybe we can start saving again. Jeremy’s car is broken again–the same thing that was supposedly fixed in March. Agnes just gets more and more complicated. Now she is getting a tracheostomy and a g-tube. The trach is going to necessitate around-the-clock vigilance which means a home health care professional will be spending the night here every night. For some reason, that upsets me more than the trach part. Jeremy has decided to go to nursing school himself, an idea that was maybe kicking around for a little while but finally decided when Agnes was in the NICU and we witnessed those nurses up-close.

I don’t know what the year will bring, but I’m hoping things will turn around. I’m also going to take real actions to make myself feel HAPPY again. Seriously, it’s been since May 2012 when I would say, “yes, I am generally a happy person and I like my life.” I’m going to join a gym, start following a household budget that includes savings again, try to make better eating choices, and join the church choir. Hopefully when I look back at this post in 3 or 4 months, I will wonder why I sounded so down.

Okay. I’m done. I got the complaining out of the way, now I’m going to go be positive. I’m positive. I’m positive.

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Every Breath You Take

Big news today: Agnes is finally off the ventilator!

The doctors had promised Agnes would get off the ventilator at least once and maybe twice before, and it didn’t pan out for one reason or another, so when the doctor told me the plan was to extubate today and get Agnes off the vent, I was a little skeptical. I’ll believe it when I see it, lady. So I showed up for morning rounds this morning, and Agnes’ nurse was giving her a dose of steroids in preparation for the extubation. Then we waited around…some more…I dozed in my chair…we waited…and the doctors came in for rounds finally! The plan was to have respiratory care folks perform the extubation while the docs were rounding in the room, just in case. So there they were. And suddenly they were gone again! What the heck? Where did they go and leave all their computers behind? I guess there was a minor medical emergency in the next room that demanded their immediate attention. Anyway, they did come back, and the respiratory care ladies showed up, and it was on! They pinned down Agnes the Wiggle Worm and peeled the tape off her face and took out the tube! Then they quickly put on the nose prongs for Vapotherm, a beefed up version of the Plain Jane prongs that just deliver oxygen. Vapotherm delivers oxygen and a mild amount of positive pressure to assist in keeping the airways open. Agnes got a bit of extra oxygen to help her through the transition, but she was down to room air levels of O2 within an hour after the switch. She is getting some positive pressure, and so far her numbers look really good. She is breathing fine with a normal respiration rate, her oxygen saturation is steady in the mid- to high-90’s, and she seems quite comfortable.

She is being more feisty now that she’s stronger and not on narcotics. I sat with her for a long time this morning, and a bit this afternoon and evening, and every time I was there, she kept trying to slide out of her bed through those little armhole doors in the side of the isolette. She would get mad and flail around, and her body would somehow scoot toward the door, and maybe her leg would even flop out. The nurse kept repositioning her, but Agnes was determined.

Agnes also is opening her eyes a lot more today. And now that all that tape is off her face, I can finally see what she really looks like! I saw her as a newborn, but her eyes were mostly closed, plus she’s gained some weight so she looks different. She’s really cute! Her eyes are really dark blue and big, and she has a cute little nose, and I can finally see her cute little mouth. When she starts to sniffle a bit on the way to crying, her forehead wrinkles and she looks really cute. When she cries, she still doesn’t make much noise because her vocal chords are sore from the breathing tube. She makes a dramatic crying face and flings her arms around. All the nurses say it’s a good sign that she cries rather than just laying there not caring what people do to her. She is starting to be appropriately irritated when people mess with her.

We’ve been asking some questions to get an idea of what has to happen before Agnes can come home, and here are some answers:

The physical therapist will come evaluate Agnes and hopefully start working on her contracted joints and poor tone. The occupational therapist will most likely prepare some splints to train Agnes’ contracted finger joints in a more open, relaxed position. The speech therapist will come at some point later to evaluate Agnes for feeding readiness and issues relating to sucking.

The milk feedings through a tube will continue to increase at a continuous hourly rate. At some point, Agnes will be phased to a feeding schedule rather than a continuous drip. Agnes has to be completely off all breathing assistance before they will attempt feeding by mouth rather than through a tube.

It is still possible Agnes will need surgery to correct her recessive jaw. It was mentioned as a possibility right after she was born, but not so much recently. She has tongue tie which they don’t want to repair because of her recessive jaw. The tongue tie is the only thing preventing Agnes from suffocating on her own tongue. If they won’t cut the tie, Agnes may not be able to suck efficiently enough to feed by mouth. In order to cut the tie, they may have to correct her jaw. I’m not sure when all this will be decided.

I think the only issues we know about right now that need to be resolved are the breathing and the feeding. Hopefully nothing else pops up. Things are starting to look a little more positive around here!

Blessed Mary, Mother of God, pray for us! Saint Agnes, pray for us! Saint Maria Goretti, pray for us!

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