Laughing, Weeping, Living

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

Grieving Agnes

Grieving for Agnes is a tricky business. For one thing, it is always tragic when a baby dies. We grieve her life but also the life she never got to live. For the second thing, we should be joyful because she is now in heaven in the arms of Mary and Jesus, and that is where we all desire to be and boy, isn’t Agnes lucky to have got there so soon. And for a final thing, now my family has a little saint whose main goal for all eternity is to intercede for us, her family, and help us to be peaceful and holy and ultimately she will help us get to heaven too so we can all be together. And that’s awesome.

But of course, I am still sad. Very sad. Not all the time, and don’t think I just walk around the house crying all the time, because I don’t. It’s more like all I want to do is lay on my bed and stare at the light on the ceiling. I don’t even want to sleep, I’m not sleepy. I certainly don’t want to do anything difficult like take a shower or reheat food for lunch. But I do these things because I have to. I don’t even really want to play with Stephen or give him a bath or sit and eat with him. I do play with him because he brings me joy, but I’m doing it only because I know that if I do, I will probably feel better. I have no drive to do these normal things, but I do them anyway out of obligation. So maybe that means I’m doing okay. I feel like I am doing okay, all things considered.

But I miss Agnes a lot. I regret that I didn’t make more of the time we had with her. I regret not holding her more. I regret that I left her in her crib when she was asleep because I didn’t want to disturb her. I regret cheerfully turning over her care to the night nurse every night she was home. I think about holding her in my arms, especially while she was dying and those are the times I cry.

It is true that Agnes is now in heaven, and she is already being venerated as Saint Baby Agnes by a few people. Isn’t that sweet? When I think about her spirit being with me and helping me to find peace, I do feel peaceful. She was definitely helping me and Jeremy on Wednesday and Thursday while we were at the calling hours and the funeral liturgy. I felt peaceful, and even a little joyful that Agnes is happy with Mary and Jesus and all the saints, hanging out with angels and enjoying a pain free existence. Her life on earth was so hard and I can’t imagine her discomfort every moment. Now she doesn’t have to endure that anymore, and I am happy about that and relieved for her sake.

So I know all these things and I can get through it pretty well when I talk with someone now about Agnes being a saint in heaven and she is “healthy” now, whatever that means for spiritual beings. But it will take a concentrated effort to keep on doing normal stuff. I can guarantee that I will still cry at apparently random times throughout the day for a while. My family can still use all your prayers, and now you can pray to Saint Baby Agnes to intercede on our behalf and to come to our aid.

Now Jeremy and I have two out of three children in heaven as our particular saints. [Most of you may not know that we had a miscarriage early in a pregnancy a few years ago. The baby between Stephen and Agnes]. We don’t know why we have to be so lucky; we wish we weren’t so lucky, but there it is.

Saint Baby Agnes, pray for us. Saint Baby Joseph Mary, pray for us. All you Angels and Saints, pray for us.

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Agnes Will Live in Our Hearts

Here is the official obituary notice that ran in the local paper.

100_1955Agnes Maria Schwager (2013 – 2014)
Our precious angel, Baby Agnes, passed away in the loving arms of her parents, on January 24, at Akron Children’s Hospital. Baby Agnes was born on June 17, 2013 to her parents Jeremy and Judith Schwager. In her short life, Agnes struggled with chronic health problems and was an inspiration to many people. Her support network reached around the globe and was a source of strength to her and her family. Agnes inspired many people to turn to God and pray on her behalf. We will always remember her beautiful smile.
She will be forever missed by her parents, Jeremy and Judith; and brother, Stephen, all of Cuyahoga Falls; grandparents, Michael and Kathy Schwager of California and Tim and Donna Kniss of Cuyahoga Falls; aunt, Sarah Kniss and uncle, David Schwager; cousin, Isabel Schwager; as well as many other family members and friends.
The family would like to offer their sincerest thanks to everyone at Akron Children’s for the compassionate and loving care given to Baby Agnes and family.
The family will receive friends on Wednesday, from 5 to 8 p.m., at the Anthony Funeral Home KUCKO-ANTHONY-KERTESZ CHAPEL, 1990 S. Main St. in Akron. A funeral liturgy will take place on Thursday, at 11 a.m., at the Holy Ghost Ukrainian Catholic Church, 1866 Brown St., Akron. Memorial contributions may be made to the Palliative Care Unit of Akron, Children’s Hospital, 1 Perkins Square, Akron, OH 44308.
[As an additional note, I would especially like to commend the Palliative Care department at Akron Children’s Hospital. If you feel at all called to make a donation in Agnes’ memory, they are beyond worthy of receiving such a gift. Jeremy and I will never, ever forget the compassion and concern they showed to our family, at the end of Agnes’ life and throughout her entire life.]
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All the Doctors and Nurses

And Nurse Practitioners and Social Workers and assorted Therapists.

Sydney knitted a beautiful prayer shawl, which we kept in Agnes' bed.

Sydney knitted a beautiful prayer shawl, which we kept in Agnes’ bed.

Agnes had a huge impact on many departments at Akron Children’s Hospital. I think there were only a couple units that had no dealings with her. On Friday as we were reflecting on Agnes’ life and preparing for her end of life, I began a list of all the people who have cared for Agnes throughout her life. I only wish I could remember everyone; there are many faces I can see in my memory, but I don’t know the names anymore. My family was so blessed by the sensitivity and concern of the PICU staff during Agnes’ final days. We are especially thankful for the nurses who spent shift after shift caring for Agnes during her final admission, particularly Eric and Kathy.

100_2019All 173 names I can remember before memory fails:

Katie, Maria, Nicole, Colleen, Lori, Kristen, Missy, Molly, Sarah, Susan, Linda, Allison, Kristi, Denise, Helena, Marlene, Denise, Hannah, Heather, Katy, Eric, John, Betsy, Matthew, Earline, Jackie, Betty, Susan, Reyhanna, Chris, Mary, Ashley, Jessica, Anna, Josh, Carrie, Laura, Kathy, Melissa, Karen, Tracey, Megan, Kristen, Vicki, Joanna, Megan, Dawn, Chelsea, Leanne, Amy, Lisa, Taryn, Elizabeth, Kari, Christian, Tara, Laurie, Ashley, Kayla, Julie, Kaylee, Chris, Nate, Rebecca, Julia, Christian, Wade, Brenda, Angela, Melissa, Zach, Jennifer, Angie, Ralph, Leah, Jennifer, Penny, Darla, Linda, Alyssa, Karli, Bridget, Amber, Lois, Christine, Amber, Cathy, Hannah, Carrieann, Amy, Karah, Melissa, Tammy, Kelly, Melissa, Joe, Beth, Melissa, Ann-Marie, Julie, Lisa, Sofya, Cathy, Tatiana, Kelly, Heather, Samantha, Joanne, Karen, Kevin, Tracey, Holly, Jenna, Caroline, Nancy, Leslie, Usha, Michael, Cathy, Dave, Mona, Mike, Emily, Jennifer, Marc, John, Tsulee, Kim, Cortney, Ryan, Chris, Urmila, Maria, Jim, Heather, Roger, Debbie, Vivek, Cassandra, Mark, Alison, Rajeev, Starla, John, Robert, Tim, Todd, John, Christine, Ted, Melissa, Gregory, Todd, Haynes, Scott, Becky, C.R., Vivek, John, Samantha, Wassim, Jaime, Elizabeth, Cooper, Jessica, Danielle, Stephen, Ibrahim, Andrew, Leslie, Patrick, Diana, Lauren…

Agnes' final footie sleeper. So perfect.

Agnes gets dressed to meet Jesus in a perfect footie sleeper.

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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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Up in the Air

There is not too much to report on Agnes since a few days ago, other than her overall condition appears to be stable and slowly improving. Yesterday she did very well maintaining a body temperature without the hot air blanket or the medicine that assists with perfusion. She is also in process of weaning down the hard-hitting narcotic pain killers. She is also clear of the intestinal infection that caused some swelling and “free air” in her belly. Her lungs sound back to baseline for her, which is to say they are stiff and slightly diminished on the left side, but at least she’s back to “normal.” She is happy on her home ventilator.

But today they decided to try stimulating her guts by starting tube feeds at a very slow rate, and she didn’t like it. She spiked a temperature and some formula seeped back out to her stomach where it appeared in the suction tubing. I guess that’s the nice thing about Agnes’ G/J tube: you can feed her guts while leaving the stomach open to suction, which helps prevent throwing up. So Agnes demonstrated an intolerance to food, so they stopped feeding her. I’m not sure what the plan is for restarting.

Plus it is not clear whether her shunt is actually working or not. I do believe that it was functional at the time of the CT scan a few days ago. But in the meantime, the neurosurgeon tapped off some fluid and that procedure demonstrated a very high level of pressure in Agnes’ ventricles. Plus today she was very sleepy. So…I guess we’ll see on Monday what the next CT scan shows.

All in all, we are still in a grey area. Agnes did improve her condition since last week; she is like a new baby! We are grateful for that and happy that she didn’t die. But as we go on, it is not clear whether this recovery is lasting, or if she is on her way to a relapse. We are very conflicted about how to proceed here. We were sad she was dying, but also a bit relieved that she wouldn’t have to suffer anymore. Now that she got better, it feels as if we are traveling the same road again, the road of suffering. The fact that Agnes did recover is a miracle and the mid-week news that her shunt was working felt like another miracle. Those events happened and many people derived spiritual benefit and faith, and trust in God because of those events. Now we know that thousands of people are praying to saints and to God on behalf of Agnes and our family, which is amazing. Even if Agnes takes another turn for the worst this weekend, that extra week she was here brought boundless grace to thousands of people. Who knows what she will do from this point forward, but every day she is here is a gift and an opportunity to draw close to the Lord and experience grace.

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9 Lives?

So…Agnes is not dying anymore? Maybe? At least not soon? Maybe?

Agnes is very slowly crawling back from the edge of death. The doctors have been able to turn off a couple of the medicines, and reduce some of the ventilator support, and take off a lot of the fluid that had built up in Agnes’ body.

It seems as if Agnes is enjoying another of her many lives. Make no mistake: Agnes is still very very sick and it is entirely possible if not probable that she will not make it home this time. But, there is a hope that she will recover. There is a small chance now that she will become well enough to live at home again.

Since she seems to be on the mend, Jeremy and I have to start making decisions about her care again. We can’t ignore the shunt anymore. We already know it isn’t functioning, so we have decided to try again with the plan we developed before Agnes decided to have a near-death experience. The neurosurgeon will get a CT scan tomorrow morning and depending on what that shows, and depending on Agnes, she may go to surgery for a shunt revision Thursday or Friday. The neurosurgeon will lengthen the catheter in Agnes’ heart so hopefully it won’t pop out again. If it does, we will know without a doubt that a VA shunt is no good, and we will have to make some serious decisions. But, at least we will know for sure, having given the VA shunt every opportunity to work.

It is strange territory, where we are. On the one hand, we know Agnes has an underlying condition that is terminal. On the other hand, she does not appear to be more ill than she has at times in the past. What should we choose to do? Should we aggressively treat her, knowing that anything we do is merely a band aid? Should we leave her alone and keep her comfortable while her body fails at an unknown pace? This is really hard.

We still have a lot to decide, and the goal line is definitely shifting every day. That is really hard, too. For the present, we will address the urgent issues like her shunt and her respiratory status, and see what she does.

I know I’ve said it before, and I’ll say it again right now: MIRACLE. Agnes was more or less dead and now she is not. We have been given an opportunity that we don’t want to waste. It is clear that Agnes has more work to do on this earth. I can’t even believe the number of people who are praying for her and for our family. It must be thousands with friends and family, and friends of friends of friends… and all over the world, too. It is amazing that such a tiny, sick baby can inspire so many to seek God through prayer. Agnes is truly helping to save souls. Her suffering is bringing graces to thousands of people. That is a miracle, too. There are so many hearts united in her cause. How can we not believe in the power of prayer, with what we have seen in Agnes’ life?

Slowly recovering from near-death.

Slowly recovering from near-death.

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Terminal

Yesterday Agnes took a turn for the worse. Her overall condition has been described to us as “critical stable.” And, “fragile.” And, “terminal.”

We have heard the words, “there is nothing more we can do except help her to be comfortable.”

Agnes is comfortable right now, and she is stable within her very fragile balance, but it is also clear that her body is failing.

After all this runaround about her shunt, it turned out not to be the deciding factor. Her ongoing trouble with pulmonary hypertension is what now her “terminal” condition.

In a nutshell what is happening is the pressure in the blood vessels going to her lungs is so high, that the right side of the heart has to work extra hard to move blood. The right side is enlarged, to the point where the left side is being compressed. Agnes’ heart isn’t able to keep up and so blood is backing up in her veins, unable to get to the heart to be re-oxygenated and sent through the arteries to her her body. Blood is backing up and with nowhere to go, fluid from her vascular system is seeping out into her tissues. The slowdown in circulation is affecting her organ functions. There is not enough blood flow to her liver, kidneys, and intestines. She is not absorbing nutrition from food, or her medicines. Her lungs are very stiff because of the inadequate blood flow so her ventilation needs a lot of support.

They could try to fix her shunt, but with organs in the process of failing what good would an operational shunt do for long term? The shunt is small potatoes. The biggest issue now is that the problems are affecting nearly every system in Agnes’ body.

She is dying.

There is always time for a miracle, and we haven’t given up hope for one. We are also talking with palliative care about Agnes’ end of life options and what we feel like we could or should do. We are always striving to make the best choices for Agnes. Right now she is behaving so we have some time to think and pray. There really is no telling how much longer Agnes will hang on. She is the boss lady. In any case it does not appear at this time that Agnes’ death is imminent–at least not in the next day or two. So that’s a relief.

Fr. Sal did allow her to receive Eucharist last night, in her own way. She got to lick the Body of Christ and I consumed the rest of it. I know she doesn’t need that sacrament because she is a baby and pure and sinless, but I wanted her to have it.

I do plan to write a beautiful post about what I’ve learned from Agnes, about the meaning of suffering and the power of prayer and all that stuff. When I feel like I can get through it! Hopefully I will be able to manage that soon.

Thank you all for your continued prayers.

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Stupid Shunt

Agnes was home for one week then on Monday morning early she was up to her old tricks. The overnight nurse did something like change a diaper or reposition Agnes, and she got mad. Her O2 saturations dropped and they wouldn’t come back up. We tried a bunch of stuff. She puked. We called in and they told us to go to the Emergency Department. We arrived and prompted a flurry of exciting, critically urgent care. They rescued Agnes with aggressive treatment. Agnes was admitted to the PICU. X-Ray and CT films were taken, cultures sent away to check for infections, heavy-duty hospital ventilator was fired up and Agnes got snuggled in for a inpatient stay.

We were hoping all her outpatient follow ups we had scheduled for this week would have satisfied her longing for hospital life, but she missed her favorite PICU staff. She must have heard that her favorite intensive care doctor was attending on Monday morning or something.

Anyway, to make a long story short it ended up being a shunt malfunction at the root of her distress this time. Plus a bit of an upper respiratory infection (read: a “cold”) thrown in for fun because why go halvsies when you can go all the way?

The neurosurgeon repaired Agnes’ shunt yesterday by replacing the valve and flushing out the two sides of the shunt tubing, but today it appears the problem is not solved. The brand new valve works great! The shunt is still not draining out her brain juices, though. So the neurosurgeons have three more things to try:

1. flush the distal side of the shunt tubing (the end that goes to Agnes’ heart) with an anti-blood clotting solution to break up any clots, if there are any. It is possible there is a small clot in the catheter that is preventing flow. They will try this tomorrow (Thursday) morning.

2. go to surgery to reposition the distal side of the shunt tubing deeper in Agnes’ heart so that the high pressures in her heart can not push the tubing out of place. They will try this Friday.

3. if those two solutions fail to produce a working shunt, the last thing to try is placing the shunt to Agnes’ gall bladder. This is very uncommon and has an iffy rate of success in even the more favorable patients. The neurosurgeon said he hasn’t done one of these in years. Also the risk of infection is much higher because…gall bladder. They will try this if/when the VA shunt proves a failure.

And that’s the end of the line. If Agnes burns through that short list of options we are done. There is nothing left to try on the cure-focused path and we switch by necessity to the path where we keep her comfy and manage her symptoms until she dies. We did start the conversation about hospice options today, just to start gathering information.

Jeremy and I are both very sad. Given Agnes’ history with her shunts, there is only a slim chance any of the final three options will work. There is still opportunity for a miracle, but I’m not counting on it.

Of course we remain grateful for your prayers. We are counting on them at this point. We don’t necessarily want prayers for healing; that is not realistic. Prayers for strength and discernment of God’s will would be lovely. Prayers for the doctors and medical staff who will be talking with us in the coming days and weeks. Prayers that we will always choose the course of action that will be best for Agnes. Prayers that we will feel peace about the decisions we make. Prayers that we will know it if the time comes when we must let go of Agnes’ earthly life.

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