Laughing, Weeping, Living

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

7 Quick Takes: August 30

Linking up with Jen at Conversion Diary.

1. Jeremy and I had the opportunity to do some hands-on trach care with Agnes this morning. The respiratory therapist came in and tried to explain every single thing we would ever need to know, then showed us how to suction and change the ties. We wanted to jump right in because doing it is the best way to learn. The therapist coached us, it took a long time, Agnes got so mad she finally gave up fighting, then she puked. Then the therapist pretty much told us that next time we should let a therapist work with one of us at a time because we were obviously very scared and she could sense my frustration and she will chart that we went over the care but we still have a lot of work to do. Then she wanted to explain even more stuff to us! We worked for two hours and Stephen was starting to be a handful in the background and it was lunch time. We were finally able to get rid of the therapist, but we’re in for more fun tomorrow morning!

2. I don’t mean to criticize hospital staff. It was just a ton of information presented somewhat haphazardly. The therapist today came in asking us what we had discussed with the therapist who trained us yesterday. I guess they are transitioning the parent education from some people to different people. Whatever, that’s no excuse for disorganization, especially when it comes to serious medical care for children. They need a curriculum that is in a specific order, so when a new teacher comes they can see from the report that we only covered chapters 1 and 2. Or maybe they’re “modules.” That’s a trendy name for medical care education.

3. Also we are sick. of. the. cafeteria. Like, I would almost rather not eat lunch than eat cafeteria food. Yesterday we had had enough so we walked to “a thai place” on Main Street. I had vaguely remembered this place from driving around downtown, so I asked Agnes’ nurse, “Isn’t there a Thai place on Main Street?” She said yes, but neither of us could remember exactly where. We thought we knew, so Jeremy, Stephen, and I set out. It was one of those things where you walk for a while, don’t see the destination, finally try to look it up on Google maps and discover you’ve walked a 2-year 10 minutes in the wrong direction, with the noonday sun beating down on his exposed, and now extremely sweaty head. We did finally find the place, and it was so totally worth the extra hoofing. Stephen didn’t like it, but Jeremy and I thought it was divine. Then it only took about 5 minutes to walk back to the hospital because it’s actually very close. Yay.

4. I must feel like eating Asian food because I made Indian food at home for dinner. Lentil dal over rice, with an Indian spiced cabbage side dish. It was delicious and light, and vegetarian for Friday. Stephen even ate some. I was so proud of him. I only gave him a drizzle of dal on the rice and covered it with yogurt, but it was a major accomplishment for him to eat some. Then I rewarded him with melon.

5. Stephen is very cute. Have I told you the coffee cart story? Well even if I have: I asked Jeremy to take Stephen down to the coffee cart in the hospital lobby to buy a latte. We have a frequent customer card, and we were due to get a free drink! I turned to Stephen and said, “Do you want to go to the coffee cart and buy mommy a latte?” And he says, “Coffee Cart? Coffee Cart?” Then I guess Jeremy gave him the free drink card to carry and Stephen said “coffee cart, coffee cart” all the way down the hall, in the elevator, down the other hall, and through the lobby. Then when Jeremy tried to hand over the free drink card, Stephen got mad and wanted to hand it over himself. Precious.

6. Stephen likes to drink coffee. Iced coffee with cream, but still.

7. Speaking of coffee, I think it’s safe to say I have an addiction. I used to do it recreationally, but since I married Jeremy, he has led me down a path of addiction, and now I can’t stop. I used to have one cup a day, and now I drink up to three cups a day. I used to have to limit coffee after noon because the caffeine affected my sleep. No longer. The other night I drank a cup of coffee at 8pm and went to bed at 11 with no problems. At least, I drink only “good” coffee. If it tastes bad, I can resist. And if there is only powdered creamer available, I have no trouble saying no.

Head over to Jen’s page for more compelling takes.

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Trach Training

Jeremy and I started our parent training today. We each have to learn, and be able to demonstrate knowledge of complete tracheostomy care. We each have to be able to demonstrate that we can trouble shoot problems, identify signs of respiratory distress, change a trach and the ties, perform CPR with and without a bag, suction out secretions, and know what actions to take when different complications arise.

Today we learned about the different parts of a trach:

The obturator is the thin plastic plug that comes inside a fresh trach and keeps the trach stiff for placing in a patient. You take it out immediately once the trach in places because it totally fills up the airway.

The flange is the little pair of wings that sit against the patient’s throat on the outside of the neck. The flange has two little loops where you attach the ties on either side.

The ties are a velcro strip that you cut to size in the back, then attach to the trach flange with thin little velcro strips. The ties need to be changed daily. The whole trach itself needs to be changed monthly for maintenance, or more often if it falls out, gets pulled out, clogs, or otherwise fails.

The trach collar is not to be confused with the ties. It is easy to call the ties a collar, but the trach collar is actually a mask that tents over the opening of the trach and is connected to a source of warm, humidified air. It fastens around the patient’s neck with an elastic. The trach collar is for use when the patient is sleeping or napping. A more portable artificial nose is attached to the end of the trach when the patient is up and about. This contraption has a little filter on it that traps moisture from the patient’s own exhalations, then supplies that moisture to each inhalation. It’s pretty nifty.

Jeremy and I had the opportunity to practice changing trachs and ties on Nicky Boy Doll training doll. Nicky also has a g-tube, an I.V., and a place for practicing blood draws and injections. Poor Nicky. The only thing Nicky didn’t have was lungs that inflate when you give breaths with a bag. Oh well. We did get to practice giving breaths to Nicky with a bag, on the trach and with the face mask. When we suction Agnes’ trach, or get ready to do a bunch of care, if she gets into trouble we would have to use a bag to help her breathe. We can attach the bag to give breaths through the trach. If Agnes loses her trach and we are not able to put a new one in, we can cover her trach site and give breaths through her nose and mouth.

Jeremy and I also practiced suctioning Nicky Boy Doll’s trach. We get a tiny tube that connects to a suction machine. There is a right way to do it: hold the tube with both hands. One hand controls the suction on/off and the other hand controls the fine details of the operation. Grip the tube with your finger marking the “safe suction depth” and keep the suction off as you insert the tube into the trach. As you pull the suction tube out again, turn on the suction and twirl the tube from side to side to pick up as much ick as you can. Suctioning is actually kind of fun, but don’t tell Agnes I said so. I like to do it because it is a concrete way to make Agnes feel better. I can see and hear that I have removed something that was causing discomfort. Plus I kind of like that slurping sound. It’s funny.

Tomorrow Jeremy and I get to learn some more information, and maybe get a chance to practice care on Agnes. I’m a little nervous about changing her trach, but that’s why they do all this training in the hospital. There will be lots of professionals around in case we get in to trouble. I will try not to be anxious. Agnes is doing very well and seems to be much more comfortable with breathing now that she has the trach. They are weaning her down on oxygen and she is completely off the ventilator. She is on only about 25% oxygen; regular room air is 21%. She was moved out of the PICU this afternoon and taken up to the floor that cares for all the trach babies. She is on track to come home in 7 to 10 days.

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Agnes’ Crib

100_1755First of all, I would just like to say, “Boom, Baby!” I assembled Agnes’ crib all by myself. Uh-huh, uh-huh. Uh-huh-uh-huh-uh-huh [name that movie quote].

When we found out that Agnes would come home with a tracheostomy, we learned that trach babies require attentive care around the clock. Therefore, we would be provided with 8 hours of nursing assistance each day. Since we are going to be sharing our home with a nurse every night, we had to think again about Agnes’ sleeping arrangements. She had been in a bassinet at the foot of our bed at night, napping in a bassinet in the living room during the day. With a night nurse, Agnes couldn’t be in our room any more. That left a few less-than-optimal choices.

1. We could cram Agnes’ crib and all her equipment into the guest room with a double bed already in place. An arm chair would also fit, but just barely. Plus it doesn’t have room for all the storage we would require for Agnes’ gear, as the closet is full of my sister’s things, and boxes of baby clothes for older babies. This would also put Agnes’ beeping alarms fairly close to Stephen thus endangering his sound sleep at night. This would also necessitate the nurse walking through the whole house over and over to get Agnes’ food in the kitchen, water and whatever in the bathroom, and just generally being very near to the entire sleeping family. Not ideal.

2. We could move our office out of the littlest bedroom and put Agnes in there. Then try to find other homes for all our bookcases and our computer table. This room is very small and would fit a crib and a dresser, but it would be tight for all of Agnes’ equipment as the closet is full of my mom’s winter wardrobe. It is also directly across the hall from Stephen’s room (see above). It is also very tight to expect an adult to be happy hanging out in there for eight hours straight. Not ideal.

3. We could move the guest room furniture out to a storage unit, or dismantle the bed and lean the pieces against the wall. We would have to set it all back up in December when my sister comes home from Japan to visit, and move Agnes to a different location for the duration of my sister’s stay. Then there is the possibility that my sister would land here for a period of time when she finishes her job in Japan and is transitioning back to life in the USA. Agnes would have to move then as well. Not ideal.

100_17584. Agnes can live in the living room. It is a nice room to spend time in (yay for the nurse), is close and convenient to the kitchen (yay for the nurse), and is a central location for the house. That way we can hear alarms if we are upstairs or in the basement. The down side is, the kitchen noise will be significant since the floor plan is open. For now Agnes might not be bothered, but as she gets older it might be more disruptive for her. Also we all like to hang out in the living room. Again, this might be disruptive for Agnes’ rest as she gets older and more particular about her sleeping routines. But, there will be adequate space for all her gear, her bed, a chair, etc. This is the arrangement we have decided to try for the time being.

We will set up her crib, a chest of drawers with a convenient wide top for diaper changes, and a storage unit for all her gear. I’m not sure if we will need a bigger table surface to manage all the stuff for trach care and g-tube care. We’ll have to see about that later. I like that the armchair in the “living room” part of the room can swivel to face the other seating or face Agnes’ part of the room. That will be convenient. There are even a few handy electrical outlets in that corner. I plan to get a surge protecting power strip to plug in Agnes’ pulse-oximeter, suction machine, humidifier, and feeding pump. We may also get a portable screen or two to help section off that area and reduce outside stimulation while she’s trying to rest.

I’m hoping this arrangement will work out. It should be okay for the present, I think. We have at least another week to fine tune before Agnes comes home. I plan to make it look real cute. I’ll definitely post pictures of the finished “room.”

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What I Wore Sunday: August 25

If I wasn’t doing a fashion link up, I would definitely not include a picture of what I wore, but since that’s the whole point of this post…fine.

100_1750Here’s an outfit that is church-appropriate, even though the fit is not too great. Lately I’m having a hard time picking clothes that flatter my figure. I feel like nothing in my closet fits right now. Today I ended up wearing an Old Navy top, a thrift store skirt, and my beaded Minnetonka Moccasins. The veil is the one I made for myself! At least the veil fits pretty well, and flatters my ‘do!

This Sunday I did manage to sing with the choir and it was really fun! There was nothing surprising with the music since it was just a regular Sunday with no important feast days. I practiced a little last night and things went smoothly this morning. I really enjoyed singing with the group. All the music at Holy Ghost is done a cappella so it was stimulating to follow the leader and sing in harmony without any help from a piano or organ. Jeremy and I tried to sit as a family up in the choir loft, but for some reason Stephen was not happy with that solution. Jeremy ended up sitting with Stephen down in the church. Maybe next week we can convince Stephen it’s fun to sit up high.

Since Agnes has been in the hospital it’s been hard to hit the gym as much as I want to. I did go four mornings, but I wasn’t able to stay for long each time because we had to get to the hospital early in the mornings if we wanted to talk with the doctors. I ran on an elliptical and it did feel good to exercise, but really it just made me feel even more like an out-of-shape elephant. Hopefully this week will be more affirming, and a reasonable workout won’t feel so difficult! The whole reason I wanted to start an exercise routine was to feel better about myself, but so far I think I feel the same if not worse, because now I have actual proof that I’m terribly out of shape. I’m not even going to weigh myself this week because I’m sure the numbers will be discouraging. I do tend to stress-eat, and Agnes went to surgery on Wednesday, and I spent the night at the hospital a couple nights, so I’m pretty sure my diet was mostly crap even though I vowed to “turn over a new leaf” or whatever.

But I won’t get discouraged! It’s a new week and Agnes is recovering well. I can do it. I can do it.

The only problem is Stephen has picked this week to develop some obnoxiousness. He is flat refusing naps, and his new favorite noise to make is difficult to describe, but trust me, it would be less annoying if he had decided to cry at the top of his lungs. Also it looks like maybe he is suddenly afraid of the dark. He wakes up sobbing. I’m not sure what to do about this since he already has a bright night light on the white noise machine in his room. And he also a randomly picky eater. Like, he suddenly refuses foods that used to be his favorites. This afternoon he refused to eat cheese. Cheese. Who is this kid?

But really, I love children. I love my children. School of charity, yadda yadda.

Linking up with Fine Linen and Purple. Head over for some other Sunday posts!

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Surgery, Baby UPDATE

Agnes’ surgery yesterday went well. Of course Jeremy and I were nearly sick with anxiety, but each of the surgeons promised their piece of the ordeal wasn’t that complicated. We were just nervous because Agnes was getting two procedures done at the same time. We spoke with the anesthesiologist before the surgery because Agnes was labeled a “difficult intubation” which they always take very seriously for the rest of the patients life. The doc promised us he would use the more intense intubation tools first, and that he would come see us in the waiting room to let us know the intubation went okay. It is a super horrible awful thing for an intubation to fail at the beginning of surgery. So we waited for him, and he never came. We were really restrained, but I think Jeremy would have chewed off his fingertips if he happened to be a nail biter, but he’s not. Of course, I had to use the bathroom and when I came back out, Jeremy was talking to the general surgeon who had done the g-tube installation. He said nothing went wrong, everything went wonderfully, and Agnes could use the g-tube the very next day for feeding. So that was all good.

The ENT surgeon was next up with the trach. His part of the surgery didn’t take as long as the estimate we had, so we felt good about that as we waited in the consult room to speak to him. He never came. We were only mildly alarmed because we’ve had to wait for him before. Finally, a Child Life person took us back to the PICU to see Agnes since she had information that the ENT had already seen Agnes at the bedside. I guess as soon as we left the consult room, the ENT surgeon went to find us. Oh well. We did get to talk to him on the phone, and I saw him this morning early and everything went fine. He said the trach was easy to place and now we just have to wait for the incision to heal and see how it works.

Agnes did pretty well overnight. She had a number of minor desaturations throughout the evening and overnight, but usually she popped back up to normal levels without any help. A few times the nurses needed to suction her trach. Agnes was on a pretty strong dose of morphine overnight, but this morning they started phasing her to tylenol so she can wake up a bit and start to breathe more on her own. They did put her on a ventilator right after surgery to give her support while she is sedated and still getting used to breathing with the trach. She had started to trigger her own breaths this morning, so they reduced the settings on the vent and she did well with that. In a couple days or maybe even by tomorrow evening, she should be ready to try breathing totally on her own. The PICU docs don’t want to rush it. She has to be in intensive care for a week anyway, so there’s no hurry to get her off the vent.

Before I left the hospital early this afternoon, they had started to give medication through the g-tube with plans to start some clear liquids. Hopefully by now she is getting some real feeds through the tube. I will find out when I go back this evening.

I have to say, seeing Agnes with the trach is really freaky. She look so different to me, and it breaks my heart to see that collar around her neck and that crazy appliance right on her throat. I’m sure I will get used to it, but for now it makes me want to weep. This surgery really upset me on a deeper level, too, which I know because I had the most horrible nightmare last night while I was sleeping in Agnes’ hospital room. It was a horrible surgical/medical nightmare about Agnes and when I woke up suddenly, I was so upset that I bolted over to Agnes’ crib to check her out. I really freaked out the nurses. They were like, “Are you okay? Did we miss something?” They got me some ice water. Gosh, I hope that doesn’t happen again!

Jeremy and I haven’t started the official training for the trach and g-tube yet, but I have been watching closely any time the nurses do stuff, and I’ve been asking questions. Hopefully the training isn’t too overwhelming. Everyone seems to think we will do fine and become pros in no time.

I can’t wait to be able to hold Agnes again and snuggle her and reassure her. She looks scared to me when she has been more awake, and yesterday her eyes were leaking little tears as she lay there. I don’t know if she was crying or not, but it was sad to see. I can’t imagine what she must be feeling and I just hope she isn’t in much pain.

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Surgery, Baby

It has finally been scheduled. Gosh, it sure is hard to pin down the ENT surgeon. He must be really busy. But finally, we have the firm decision: Agnes is going to surgery tomorrow (Wednesday) at 2:15pm Eastern Time. She is getting a g-tube first, then the tracheostomy, all under the same anesthesia during the same trip to the OR.

This surgery will be quite involved because the two procedures are happing in the same visit. I’m kind of nervous because she has to be intubated for the g-tube surgery and that was extremely difficult to do the first time. After the general surgeon is done with the g-tube, the ENT surgeon will take over and do the trach. He came by to talk to me about the procedure this morning, and it doesn’t sound too bad. Essentially, they just make an incision on Agnes’ throat right on top of her airway, then slip out the invasive tube as they slip in the trach. A few sutures around the incision site and done.

The care of a kid with a trach is something else entirely. Jeremy and I have to learn how to:

  • change the ties that hold the trach in place,
  • suction the tube,
  • replace the tube,
  • do CPR with and without a bag and mask,
  • trouble-shoot problems that arise.

We also have to:

  • Make sure someone is awake and watching Agnes 24 hours a day,
  • which includes at night and in the car,
  • and be able to leap into action the very second her pulse-oximeter alarm starts to ring.

Apparently we can expect Agnes to be hospitalized for at least two weeks following the surgery, not because she will be healing, but because it takes that long for us caregivers to pass the training and organize home care needs! Jeremy and I will have to stay in Agnes’ hospital unit for a 12-hour test where we provide all her care. If a nurse has to jump in and help, we fail and have to try again during another 12-hour stay.

…And all that is just for the trach part of Agnes’ dealio! We still haven’t heard much about the g-tube at all, aside from the opinion that it is easier than the ng-tube we have been doing. I don’t believe it because the ng isn’t surgical, and if it falls out, so what? The g-tube is a surgically installed tube directly into Agnes’ stomach, and if it falls out we have to quick! stick something back in because the hole will start to close. Then I think we have to come in to the hospital to have it fixed. So, I don’t believe it’s easier, and I won’t believe it until I’ve cared for Agnes’ g-tube for a couple days I see for myself what it’s like.

Luckily, since Agnes is getting all this stuff, we get to have nursing support at home. We will have a nurse come to our house every night to be with Agnes for eight hours overnight. Unless the nurse isn’t available, or gets sick, or weather prohibits her from coming. Then Jeremy and I have to cover the night too. Thank God we do live with my parents; they have agreed to take the trach training as well. Hopefully once they see what’s involved, they won’t get overwhelmed and change their minds!

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What I Wore Sunday: August 18

sunday 8-18-13

dark hospital room lighting.

Well, yesterday was Agnes’ two-month birthday, and today we had to go to church infant-less once again. It was kind of strange, people just asked us who was taking care of the baby, was she with Grandma? I guess that might be a normal question but I was just thinking that if we had Agnes in our care she would definitely be coming to church with us. Anyway, we had to tell folks that she is back in the hospital. It’s sad. Poor Helena, Fr. Sal’s wife. She weeps every time I tell her sad news about Agnes. I can’t wait until I have something good to tell her! We went to the hospital after liturgy and took the WIWS photos there. I’m wearing that mysterious dress from the thrift store in Albuquerque. The one with absolutely no labels anywhere in the garment. So far it hasn’t disintegrated in the wash, so I guess I’m laundering well enough. I also wore my cream colored veil that I made myself. I took it off in the parking lot of the hospital! And my black Minnetonka Moccasins. You may have noticed that I didn’t wear them last week–proof that I do own other shoes. I would also like to point out my hospital armband, a fine accessory for any look, any season.

sunday 8-18-13 with stephen

Reading a story about an alligator raised by birds.

Today we were a little late for church because we were ready to leave ten minutes early. Wait a sec, this will make sense in a minute, I promise. So we were ready to leave ten minutes early, and we decided to hang out a little before leaving because one time we got to the church twenty minutes before liturgy and the doors were still locked. So we hung out for a while, then left maybe five minutes later than we should have. Then about .2 miles from our house, the “low fuel” alarm on the car starts beeping. Curses. So we had to stop for gas. Then we were late to church. Because we were late, I didn’t go up and join the choir this week. Next week I will! It’s okay though, because I studied the worship book carefully last night and figured out which tone to use (tone 4) and placed my ribbons, and even practiced the troparion, kantakion, theotokion, and prokemion. However. Apparently we are still in the post-feast period for Dormition of Mary (Assumption) so the music was a little different. I figured it out pretty quickly during liturgy, but I wasn’t prepared for it ahead of time. Next week I will be a good choir member!

I did go over to Planet Fitness and sign up for a membership. They are running a promotion for $20 a month for 12 months, with no start up fee. Remember I said I was due for something good around here? Well, Planet Fitness bills the monthly dues on the 17th each month, and they don’t prorate the membership when you sign up, so my first payment won’t be until September 17th! One month of free gym time! I’m excited to start tomorrow. I also need to go buy some fresh athletic wear so I don’t look so frumpy at the gym. Oh darn, shopping. Poor me. Linking up with Fine Linen and Purple like y’do.

 

Agnes from a few days ago. It's been awhile since I posted a recent pic.

Agnes from a few days ago. It’s been awhile since I posted a recent pic.

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My Happy Goals

First I would just like to say, “Happy Two Month Birthday, Agnes!” Yep, Agnes is two months old today, and has spent a total of two weeks at home, the rest at the hospital. At least this time she has her own private room with a private bath that includes a shower, and a TV. The room includes a TV, not the private bath. I realize how that looked up there so I want to make it clear. Plus, Agnes can order room service from the cafeteria whenever she wants and the tray will come up in about 40 minutes. So, long story short, this hospital stay is pretty nice, except for the fact that it’s mostly 6 to 12 year olds on the floor and Agnes’ nurse is usually very busy with her other patients. Oh well. Hopefully Agnes will go to surgery on Monday or Tuesday to get the tracheostomy and the g-tube. Then she will hang out in the PICU (same as NICU but “pediatric” instead of “neonatal”) for a couple days before transferring up to the floor where all the trach kids pal around together.

Now that the shock of Agnes’ new news has had a chance to sink in, I think I can mentally move on to other thoughts. Thoughts along the lines of: I need to do something active to promote my own happiness because it ain’t gonna happen on it’s own. The first step I will take is tomorrow I am going to a fitness club to sign up as a member and I will start an exercise routine on Monday morning. My fitness goal is to tone my postpartum baby belly and fit into a new pair of jeans that have a regular old zipper fly and no elastic. I will buy these beautiful jeans when I believe my goal has been achieved. My other fitness goal is to lose at least 30 pounds, but preferably 40 pounds. I have a question for you fitness calculator type people. If I exercise hard 3 to 4 mornings a week for approximately 90 minutes each time, and find opportunities to move throughout the day and on the off days…and I observe a non-deprivation diet that is mostly portion control and snubbing high fat/calorie foods most of the time: how long can I expect this goal to take? This is just for my information so I can set a reasonable timeline for myself for motivation. You know, like, lose the weight by Christmas or something. Because if this plan is going to take a really long time, I will up my game so I see some results sooner.

The other step I am taking to actively promote my own happiness is I have joined the church choir. I am maybe overqualified to participate as a lowly member of the bunch, but that is what I want to do. There is a lovely lady who kind of leads the operation now and she is way more qualified than me to lead a Byzantine choir. I’m still finding my way around the worship book and I have no idea about the different tones. The choir is fairly informal now, and I’m not sure if they will do more once the summer ends. I hope there are some regular practices because that is the best time to learn the ins and outs, and to ask questions!

Finally, the third step I am taking to promote my own happiness is, starting in September, Jeremy and I will begin following a household budget again. This doesn’t seem like a big deal, but we have just been floating and we feel kind of aimless. We are ready to start telling our money what to do. It will help us to feel more independent and give us some direction for the future. Jeremy has been keeping track of all his tips that he earns, and how much he spends on gas as a delivery driver. He is also saving his August paychecks so we can add up all the amounts and see what our true monthly income is; then we can plan for September with a fairly accurate figure. Hopefully we will be able to start saving so we can eventually restart our student loan payments and maybe even move into our place.

If you don’t mind, I will keep track of my happiness and fitness progress here on the blog. Well, I guess I don’t care if you mind! It’s my blog and I’ll write what I want! 😀

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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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The “T-Word”

It’s been a long couple of days around here. Yesterday morning Agnes spit up a high volume for the third time in a fairly short time frame, so we decided to call the pediatrician. For some reason, the office was closed so the phone line forwarded to a 24/7 nurse help line. I told the nurse what had happened, and she recommended taking Agnes to the emergency room, in light of the increased spits and knowing her history of malrotated bowel. Grr. So we took Agnes to the ER at Akron Children’s Hospital. While we were there, they discovered that her oxygen levels were low and that she was having episodes of desaturation. So they ordered a bunch of tests. X-rays, blood cultures, surgery consults, yadda yadda. Of course everyone was freaked out by Agnes’ squeaking breathing, and they decided they had to keep her in the hospital because of her breathing and the oxygen desats. Grr.

So Agnes was admitted for monitoring respiration and oxygen levels, with a slew of tests to try to find out why she is having these episodes. No one seems terribly concerned about the spit ups, apart from the fact that she may have aspirated formula or spit up into her lungs and that is causing the increased trouble.

Today she had a laryngoscopy which detected a narrowing of the space between the vocal folds which the ENT doc is pretty sure is causing the noisy breathing and possibly even the low oxygen levels. Unfortunately there is nothing to do about that problem because any surgical intervention would probably cause more problems then solve, plus the issue may be neurologic, where her brain isn’t telling her vocal folds to open the right way.

Also she had a follow up echocardiogram to determine if her low oxygen problems are because of deoxygenated blood in her heart bypassing the lungs and going straight to the chamber which pumps back to the body. The test concluded that this is probably not the case, which I guess is good. She won’t need heart surgery.

However, that only leaves the upper respiratory obstruction and at this time there is really only one surefire solution for that issue:

Tracheostomy.

This is where they put in an alternate airway below the obstruction. They cut a whole through the outside of the throat and create an opening into the trachea. I don’t know the whole story about what all is entailed in caring for this and maintaining the health of a child with a tracheostomy, but apparently it’s a big deal.

They aren’t saying Agnes should get one today. They do plan to keep her in the hospital over another night or two and run a couple more tests related to upper airway and swallowing reflex and things.

However, I am not clueless and I can tell the tracheostomy is in Agnes’ near future, unless she totally turns around and starts wowing everyone with her super-efficient breathing.

As a side note, I amused myself this afternoon in the hospital room by counting up all the doctors and nurse practitioners who have cared for Agnes. Including my OBs, the perinatologists, labor and delivery docs, geneticists, neonatologists, heart, brain, and endocrine specialists, surgeons, ER docs, nurse practitioners in every unit, and doctors on the floor where Agnes is now: over 50 people. That doesn’t even include the dozens of nurses, the therapists, or the techs who run the ultrasounds and other tests. Gosh, girl. Agnes is single-handedly keeping the medical profession in work.

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