Laughing, Weeping, Living

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

Other People’s Babies

You know it’s spring time when all the ladies you know start having their babies. Several of my facebook acquaintances recently gave birth to their beautiful new babies, and the newborn photos are adorable. The kiddos are so cute, and sleepy, and they have sweet little hands, and I could just eat them up. The little boys wear hats with an owl face and the little girls are in cute pink ruffles. I really like seeing these children of my friends. I am happy for the families who welcome these babies.

When Agnes was born, I joined a couple online networking groups for support. Mommies of Miracles and Moms of Trach Babies are the two main groups that I joined. I am still linked to these groups since they encourage the moms whose children have passed away to stay in touch with the community. I have been able to comment on a couple questions that have come to the discussion board, and it does help me feel connected to a community. The members of these groups submit charming photos of their “miracle” children with complex and often debilitating medical needs. Children in wheelchairs, children who can’t talk or see or hear, children who are dependent on feeding tubes, trachs, regular I.V. treatments, children who require multiply surgeries and hospital stays. Beautiful children who are always the light of mommy’s eye, and she loves this child so much, and she would do whatever and anything to help this child have a better life.

I love to see pictures of these children, too, the children who are alive despite grim diagnoses and shortened life expectancies. I love reading about how these children have overcome difficult circumstances in order to thrive in their own special way.

It does get really hard for me, though, to read about these miracle children. Harder than reading about healthy babies. My friends’ healthy babies are beautiful but it’s the stories of the medically complex babies that break my heart.

Earlier this week I saw some absolutely gorgeous photos of a little boy in¬†the Mommies of Miracles group, and he has a very similar genetic condition to Agnes. Not the same, but very similar. His story was full of uncertainty, but he now appears to be thriving with the help of a feeding tube, and that’s it. His eyes were so big and blue, and he looked so alert, and he looked like Agnes would have looked if she ever opened her eyes. And he’s still alive. And doing well. With a condition so similar to what Agnes had. And it’s stories like his that are so hard for me to see. I am happy for that little boy and his family; he is a beautiful child. But I am also intensely sad and a little bit jealous.

This experience makes me wonder if I should still stay connected to these groups. Is the connection helpful for me or does it simply bring heartache? I don’t know. I love seeing the photos of miracle babies, but each one is a reminder that my miracle baby is not here anymore. I can cheer on these children and pray that they continue to beat the odds, but at the same time I am painfully aware that my child did not beat the odds.

Baby Agnes, pray for me.

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Busy Week

We brought Agnes home on Monday, and it has been a busy busy week. Agnes had a pediatrician appointment on Tuesday. It was our scheduled 4-month well baby visit. Funny story, the appointment was actually on Monday, but in my mind I thought it was Tuesday so I never rescheduled because with a Monday discharge she would make the appointment easily. So I’m on the way in the car, and I suddenly get that feeling, you know the one. I called Jeremy and asked him to check the calendar. Well, shoot, I was totally going to be on time except now it looks like I am actually 24 hours late. Jeremy called and they were gracious enough to let me come in anyway, so Agnes had her appointment on Tuesday.

Then on Wednesday Agnes visited Neurosurgery for a shunt check up. It’s working.

Then today Agnes visited Neurology for some sort of follow up. Agnes is delayed, partly because of her lengthy hospital stays, partly because of her chromosome stuff.

In the midst of all this, we’ve been calling to get in-home therapies restarted. We’ve fielded calls from the Social Security office and BCMH. We’ve scheduled home care equipment deliveries. We’ve had visits from home nurses and social workers.

Tomorrow we don’t have to go anywhere, thankfully. That’s fortunate because Agnes hates to ride in the car so much, she gets sweaty and breathes hard, and her color gets really weird and I worry about her. She’s even puked a couple times because of a stressful car trip; but so far today no throwing up. I’m hoping she can settle a bit over the weekend before we move back into the week. Next week we don’t have very many appointments, plus we should start getting more hours of private duty nursing next week. That will be a big help!

Okay, that’s all I have time for today, but I wanted to give a quick update!

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CPAP Plus Pressure Support

Agnes totally owned the switch to CPAP plus Pressure Support. There really wasn’t much difference for her compared to the previous setting, since she was breathing a lot on her own already. The big change is now the ventilator is not supplying even 5 breaths per minute for Agnes; she has ask for every breath she takes. The machine still supplies the base pressure (the CPAP part), and when Agnes takes a breath, the machine pressure increases a bit to support the breath (the pressure support part). There is a back up ready, if Agnes stops breathing for 20 seconds, the machine will give a few breaths. So far this has not happened, except Agnes can trigger this back up response by holding her breath in a fit of pique–which she did do today, just not for a full 20 seconds.

There were a couple good trials for Agnes after the switch, too. They did an echocardiogram which didn’t appear to be upsetting for Agnes, just long. She was awake for the whole thing, but as far as I could tell she was not agitated. They also “pricked” her heel for a blood gas test. They call it a “prick” but really it’s a strong jab followed by at least 7 to 10 minutes of squeezing, prodding, and poking with a thin little needlelike collection tube. As far as I could tell, Agnes was extremely agitated and she hated this whole experience. Her ire did cause the monitor to alarm because it looked like she was dying, but when she kicks a lot the sensor doesn’t pick up well, so I’m not sure how close to dying she actually got. I do know that she recovered from the blood draw very quickly after the lab person left. So, all in all, a good trial for the CPAP/pressure support.

I think the next step will be to take away the pressure support and leave plain old CPAP. Then take that away, and Agnes will be on her own! I’m pretty excited! I think Agnes will be able to come off the machine entirely, but it’s a big change to take away the pressure support, and another big change to take away the CPAP. It’s possible Agnes will not respond as readily as she has been; the next couple changes are much more dramatic than what we have been weaning. Here’s hoping!

No word on the echocardiogram yet, but hopefully tomorrow we will know whether they plan to treat Agnes’ pulmonary hypertension with medicine or not.

Agnes also had a blood draw this afternoon to send away for a genetic microarray test. This test will tell us which genes are involved in Agnes’ special extra chromosome material. That may give us clues about her future. This test takes a while: at least a few weeks and possibly longer. Our nurse told us she knew of one kid who submitted blood samples and had tests done for a year before they got answers. I don’t think the results of the test will make a huge difference in Agnes’ day-to-day care, so any information we can learn will be just for knowledge and insight.

So that’s what’s going on. If Agnes can manage to stick without the ventilator, we should be home in two weeks or so. That would be nice!

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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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Baby’s First Bath Time Photo Shoot

It’s really hard to give Agnes a bath. I remember Stephen being hard too, maybe requiring four hands at first when we were inexperienced. He really hated baths at first, and he would flail his arms around and cry and cry. Agnes is difficult for a different reason. She is so floppy and doesn’t resist enough with her legs and arms when she is in the tub. We are still using that tiny pink tub they gave us from the hospital which is useful because if forces Agnes’ butt to stop sliding away from me when I’m trying to wash her head and torso. She is really slippery! She doesn’t fight much during the bath, and she doesn’t cry; she just looks around with a shocked expression and flops and slides all over the tub. I almost want to hook her arms over the edges of the tub to keep her from sliding around so much. I wonder if she would tolerate that?

I managed to get a few decent photos after the bath.

See her pretty eyes?

See her pretty eyes?

She's staring, bewildered, at the overhead lamp.

She’s staring, bewildered, at the overhead lamp.

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Now to hide some news down at the bottom of post, we had a follow-up with the neurosurgeon today. He is monitoring Agnes’ enlarged ventricles to see if/when they start to grow at an alarming rate. Well, I guess things in Agnes’ head are starting to show signs of pressure. Her head circumference has made a little jump, and so have the ventricles. She has another follow-up in a month to see what’s going on, but if the ventricles keep swelling, she will need a shunt. This is not surprising to me but of course I hope she doesn’t end up needing a shunt! She has defied expectations before, but my personal feeling is, she will need a shunt at some point. I learned that shunts are a more or less permanent installation totally inside the body. The shunt drains fluid from the brain into the “belly” which I forgot to ask if that means her stomach, her intestines, or just into tissue that is not an organ. She would need periodic check-ups to make sure the shunt continues to operate normally, but it sounds like a one-time surgery unless the shunt fails for some reason. The neurosurgeon did say that some babies who need shunts do outgrow the need, but that’s mostly premature babies. I think because Agnes’ ventriculomegaly is part of her special chromosomes, she will probably need to keep her shunt should she end up getting one. Only time will tell if she will need it.

Also in other news that is more positive, Jeremy and I did the same blood test as Agnes to determine if other children we may have will be at an increased risk for abnormal genetics. The results say: No! Agnes’ dealio was a totally random occurrence, and any future children we may have will not bear an elevated risk of Something Strange.

So…I’ve been thinking–and this clinches it for me–Agnes must have a really important reason for being here and for being the way she is. Her God-given mission must be super important. I don’t know if she has already done it, or if she’s waiting to impress us, but I plan to watch out for something amazing!

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Agnes, Woman of Mystery

IMAG0148It’s been awhile since I posted because so much has happened so fast. Agnes went to surgery for her intestines, then she went to another surgery to install a long-term secure I.V. called a Broviac. This kind of I.V. goes in through the scalp and threads through a major artery in the neck and into the heart. It’s way more stable than an I.V. in a foot or arm vein because it uses a major vessel rather than a peripheral vessel. So, Agnes has been pretty much unconscious for almost a week, recovering from her various surgeries. The doctors decided to not remove her ventilator tube on Monday as originally planned because of the Broviac surgery. It was a bit of a surprise that she needed it, but the docs couldn’t use any of the other I.V. methods with Agnes for one reason or another.

Jeremy and I met with the geneticist on Monday. All of Agnes’ problems appear to be related because of an anomaly with her chromosomes. Sometimes there is an issue with the development of a fetus, or even as far back as the egg and sperm forming, and the genetic material gets funny. This can happen randomly to any baby, and Agnes is the lucky winner in this instance. In her case, she has some extra genetic material on one of her chromosomes. This is no big surprise to Jeremy and me; since we first found out about the ventriculomegaly, we’ve known that the most common cause of that condition is a chromosomal or genetic issue with the baby. We were even prepared back at 20 weeks to learn Agnes would have Downs Syndrome. Well, she will have something. The exact duplication of genetic material that Agnes has can’t be labeled by a specific syndrome or condition, which we learned from her nurse happens about 50 percent of the time. The geneticist was able to give us some predictions about Agnes’ future based on similar cases, but her specifics will only be revealed in time.

The doctors are concerned about Agnes’ long term outcome, but at the same time they can’t give us many solid ¬†predictions because Agnes is a unique individual and her case is one-of-a-kind. Based on the similar cases the doctors have in their literature, they can tell us that Agnes will have multiple health problems, and she will have developmental delays. The geneticist can’t say how severe the problems and delays will be; that will only be revealed in time as Agnes grows older. He was able to say that Agnes’ outcome depends on the severity of internal issues that are discovered. She did have the mal-rotated bowels which were repaired, and the mild ventriculomegaly. So far her heart looks pretty darn good, and she has only shown a little trouble breathing on her own. Agnes has responded to physical therapy to help improve her poor muscle tone and contracted joints in fingers, wrists, and knees. We still don’t know if she will tolerate feeding by mouth because she has been given very little food the whole time she’s been born. And there is still lots of uncertainty about her airway and lung functions. But, a lot of the early signs do offer hope for a more positive long term outcome in Agnes’ case.

I know our situation has potential to be very grave. The neonatologist taking care of Agnes told me that a baby in the NICU several years ago with a similar diagnosis did fairly well, living to age 13. I don’t know if that is supposed to be encouraging or a “be realistic” bit of information, but I don’t fault the doctor for sharing it with me. Any amount of time Agnes can be with us is a great blessing. I’m realistic about her condition, and I’m prepared to accept it whether she lives 13 days, 13 years, 30 years, or longer. Of course, I hope she lives a long long time!

I do believe wholeheartedly that Agnes is a great grace in our lives, no matter how long she lives or what condition she is in long term. She is already an apostle, bringing many people closer to God in prayer. Because her condition is so mysterious, she is bringing us the opportunity to continually offer prayers and always trust in God’s will. Agnes is giving us the opportunity to be mindful of the Blessed Mother’s close presence at every moment.

Agnes is teaching us patience and acceptance. She is teaching us about the miracle of life and how every person has special gifts and a particular mission to accomplish on the earth.

It would be nice to know more about Agnes’ prospects for the future, but I almost prefer it to be unknown. This way we have more opportunity to be hopeful and trusting in God. There is more opportunity to recognize the small miracles. Like today: the doctor just decided to reduce Agnes’ ventilator rate and all but promised the vent tube would be removed before the weekend! This was a great surprise, and I have no doubt in my mind that it was the result of all the prayers that went up last night on Agnes’ behalf. This is proof that now is the best time for prayer, even more so than before!

So, this week has been really difficult and stressful on the family, but there is a mix of upsetting and hopeful news. Of course I’m very scared about my future with a special needs baby, but Agnes is giving me the opportunity to rely on Mary and the Lord for strength. I can continue to be hopeful because things will change from day to day, and I believe in the power of prayer.

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