Wednesday, February 15, 2017

So, You Need a Zofran Pump? (And Other Hyperemesis Gravidarum Minutea)

Congratulations! If you are reading this post, you or someone you know probably needs a Zofran pump.

If you're using a Zofran pump, you're probably one of the 0.5-2% of all pregnant women who suffer from hyperemesis gravidarum. So, you can consider yourself one of the elite. The specially chosen.

Regular readers know that this is my fourth HG pregnancy, but it is the first pregnancy that I've needed more than one medication to manage my symptoms. This pregnancy I have rotated through five different anti-nausea medications, and am currently on four different ones. Even while on multiple different medications, I still threw up and lost weight in my first trimester. I can only imagine how much worse it would have been without that medical support!

So, first a really important note. Please, please don't comment on this post about the safety of Zofran. And please don't hound any HG moms in your life about it either. Zofran, and any other anti-nausea medications used to treat hyperemesis gravidarum, are not used lightly. Hyperemesis gravidarum is, historically and still in modern cases that are untreated, a potentially deadly condition. It is not to be taken lightly. Before current treatments, hyperemesis gravidarum was often a death sentence to women. Not so any longer! But it is still a very serious condition, that requires proper treatment to sustain the life of both mother and baby. No use of medication is without potential risks, but the risks of not properly treating hyperemesis gravidarum are far more significant.

(As a side note, the actual incident that resulted in the lawsuit surrounding Zofran involved an instance where a patient was given a significantly larger dose at one time than she should have - the equivalent of being on a Zofran pump for several days, given at once. Obviously, that would be problematic, and is more of a reflection of malpractice than anything else.)

So, first of all, if you need a Zofran pump - all kidding aside - I'm sorry. I'm sorry your HG is so rotten that it's come to this. However...there is hope that it might make a big difference for you! So, it's also a little bit of a good thing, too. My second trimester is definitely more manageable than it was with my second pregnancy, and I think that the pump is playing a part.

When I found out I needed a Zofran pump, I scoured online for every pump tutorial I could find. I knew it was subcutaneous, so I knew I would have to be sticking myself with something. But I didn't have the faintest clue as to how that actually worked. And, while I am not afraid of needles, I wasn't relishing the idea of actually sticking myself with one. (Side note: I show a picture of the needle itself in this post, so you can see how small it is, but there are NO pictures of me actually sticking myself. You're welcome.) 

So, in my search, I could only find tutorials for one kind of Zofran pump. (Here's a great video tutorial for that other kind of pump.) Then, my home health nurse showed up...with a different kind of pump. And I couldn't find any tutorials on it! So, here is a tutorial for how to use my weird pump, in case your home health company uses the same kind. (I think my nurse told me this one is usually used for chemo treatments, but I'd imagine there are other companies that use it for Zofran, too.) It is really similar to the other kind of pump that is used, but it's actually easier to switch medicine cassettes (no loading of syringes necessary!). So, without further ado...let's dive on in!


This is my handy-dandy pump. The whole main part is the pump itself - what keeps track of dosage and the mechanisms that get the job done. You can barely see a strip of white at the bottom. That's the top of the cassette that contains the actual medicine. I just cut it off because it's basically covered in a sticker with all my prescription information and I figured you didn't need that. ;-)


Here's what my set-up looks like, when I'm gathering supplies for a site (the place where the catheter is inserted in my skin) or cassette (the actual case with the medicine, which doesn't get changed every day) change. I'll walk you through each item step by step.


This is the sharps container. You can't just throw your used needles away in the trash, so you have to put it in this handy container. I usually put in my used catheters, too, since that's a biohazard type waste, but I don't know if everyone does that. When it gets full, you give it back to the home health company and they bring you another one.


One of my weird triggers this pregnancy is washing my hands. Thankfully, I can wash my hands with soap and water most of the time now, but there was a stretch where I could only wash them in the morning and had to resort to hand sanitizer to avoid puking from the feeling of water on my hands. Why am I tell you this? Oh, right...just reminding you to wash your hands or use hand sanitizer before you change your site! 


An alcohol wipe so you can get your skin super clean like the nurse always does before you get a shot. You get to pretend to be a nurse, lucky dog!


Tagiderm. It's a clear, plastic kind of tape that covers your site once your catheter is inserted. It didn't give me huge problems when I first started using a pump, but now it's super itchy. You can always talk to your home health nurse for suggestions for dealing with the itchiness, but I find putting regular lotion on old site usually soothes the skin.


This is your actual sub-q site set. It has the tubing and needle you need to get hooked up to the good stuff. 


Step 1: Stop the pump! This means that no Zofran will be pumped out when you disconnect the tubing.


Step 2: Get set up to prime the tubing in a minute. I kind of felt like a genius when I figured out how to do this. My nurse couldn't figure it out, either. I used to have to completely unlatch the medicine cassette to get the option to prime the tubing. Then, I realized that when the pump is stopped, you can select options, press enter, and you're all set to prime. Woo-hoo!


This is how the screen will look when you hit enter. Don't click the Y button yet! You're all set to prime the tubing once she switch to the fresh one.


This is how your site looks when you open it. I have no idea what the point of that plastic circle on the bottom is, so please enlighten me if you do know. The cylinder at the top of the tubing is what we're after here. DO NOT touch the cylinder itself! To attach the new tubing, hold the actual tubing, not the cylinder. If you touch that little cylinder, disinfect it with alcohol or alcohol wipes, so it's sanitary, again. 


Step 3: Switch the tubing. On the left, you can see a thicker tubing and a thicker cylinder (you can touch the outside of that one, but not the inside). One the right, you can see the littler cylinder (the one you can't touch) and the thinner tubing. The thicker tubing is what is attached to the medicine cassette. The thinner tubing is attached to the site. When you switch sites to a fresh one, you want to unscrew these tubes from each other, and screw in the new tubing to that thick tubing. Confused yet? When you're done, it'll look like this again. 


Step 4: Prime your tubing. Right now, your new tubing is filled with air, and you don't want air or air bubbles in your tubing. To avoid that, you "prime" it, or pump a small amount of medicine through the tube to fill it up. This is the side view of the catheter/needle. The blocky looking thing on the right is what you pinch and retract once you have successfully inserted the catheter into your skin. The left blue part is covering up the needle encased in the catheter. Once the catheter is inserted, the needle is retracted from your skin. 


See the little needle in the center there? 


Here's another view.


To prime your new catheter once you're hooked up to the medicine tubing, point the needle downward (into your plastic case that the site came in, or on to a piece of tissue), and click the "Y" button on the pump. I usually have to press it three times before I see a spurt of medicine come out of the tube. Once you see that, you know that the tubing is air free!


Once your tubing is primed, peel off the sticker from that white circle around the needle, and take off the blue cap. This is the needle you're going to put into your belly (or leg...but belly is usually easier because the skin is less tough). It's tiny, isn't it??? Not scary. If you relax and pinch a really large chunk of skin (pinch an inch) you usually won't even feel it going in. Even if it does sometimes hurt, it's quick and not too bad. You can do it! Before you insert the needle, pick a spot on your belly, rub the skin liberally with the alcohol wipe, pinch and inch of skin, relax, and stick the needle right in the middle of the pinched skin. Relax and put it in straight, and you'll do great!


When you pinch the top, the needle retracts and looks like this. Thankfully, that whole thing doesn't have to go in your belly! You only put in the tip. And you're done already! You're a champ. Click that top left tab over the top of the needle.


And throw that used needle away in your sharps container!


This is what the site looks like when the catheter is inserted! Put the tagiderm tape on top and you're good to go. I'm not showing you my whole bruised and welt covered belly because I'm too modest, so you just get to see this little corner. 


I usually alternate sides of my belly for sites. Because Zofran is a skin irritant, it causes redness, bruising, and welts, and the sites need to be changed often. I find once a day or so usually works well, but some moms need to change them more frequently. The irritation is a small price to pay for keeping food down and being able to talk and sit upright! It isn't fun, but it isn't awful and you kind of get used to your stomach looking like a punching bag. Icing old sites or applying heat can help.

After you install the new site, you'll still have the old site and tubing hanging off of you. Pull that out of your belly, and it will look like this. Just a tiny little catheter! The catheter is stiff, but somewhat flexible. If you insert it correctly, it should cause pain once in (although occasionally the Zofran will sting when first pumped in). If it's really hurting, it's time to switch your site! Sometimes a tiny bit of clear liquid or a few drop of blood will come out of the old site (especially if it was getting really irritated and not absorbing the medicine well). Sometimes nothing comes out. Some women like to squeeze out excess Zofran after removing the catheter. Do whatever works for you. You shouldn't need to put a bandaid on it. (I have only briefly needed to once, when the site was just a really bad placement and ended up bleeding a lot when removed. That is not normal, and probably won't ever happen to you....but don't freak out if it does. The bleeding should still stop fairly quickly.) I always throw my old catheter away in my sharps container.


Start the pump, and you're good to go! The first pump of your Zofran may sting at your new site, but don't worry...it usually won't sting after the first pump. If it keeps stinging a lot, you might want to just switch sites again. 


This is what the screen looks like when you are all done! You want to make sure it says, "running" and also check the reservoir volume number, so you know when you'll have to change it. Note: if you change the battery (it will beep to tell you when you need to) it will reboot as "stopped" not "running." So always make sure your pump is actually pumping! 


Then zip up your case and you're good to go! Anyone who has seen me up and about recently has seen me with this trusty case slung over my shoulder.

That's it! Changing the medicine cassette is basically the same process, except you have to unlatch the reservoir by turning a dial on the side. The reservoir pops out and you pop a new one in. Other than that, the whole process is basically the same. 

You can do it! And I hope it helps you as much as mine has helped me. Fight on, warrior mom! You've got this!

For more hyperemesis gravidarum info, check out Help Her, or take the assessment on the Diclegis website to get your PUQE score. HG looks different for every mom, and some HG moms don't actually throw up a lot! These resources can help you figure out if you have HG and where you fall on the spectrum. And don't hesitate to contact me with questions, either. ;-)





Monday, February 13, 2017

My Four Children (And It's A...)



Last week, I was officially 19 weeks pregnant with this newest love of ours, and we had our mid-pregnancy/anatomy ultrasound done. Ever since Gabriel's second ultrasound, the one where we found out we had lost him, I tend to dread ultrasounds. Every one is a reminder of the innocence that I've lost forever. I know there is no guarantee that I will hold a living child in my arms.

Thankfully, this ultrasound went beautifully! Baby was super active (you can see a little tip of a hand being touched to a forehead in the picture below...those little arms and legs were waving everywhere!) and super healthy. All anatomy looked fantastic, heart was functioning beautifully and pumping strong, and it made all the suffering of the past months absolutely worth it!

We also found out the gender of this newest little Chronister...ready? It's a....


...third baby girl!!! Our oldest two are elated! Therese jumped up and down when we brought home the pink balloons and shouted, "Mommy! Mommy, it's just what I wanted!" (Maria was just excited about the balloons, but I can't blame her. They were pink and they were shiny and they were hearts. What's not to love?)



Although I very much hope to have a little boy at some point, in a way it was a relief knowing this little sweetheart is a girl. I know girls. I have experience with daughters. I even have a bin full of baby girl clothes waiting for our third daughter to grow into.

But there was also another reason why I was glad to know that this is a girl. Because it gave me further affirmation that Gabriel must be a boy. For one, this pregnancy has been every bit as miserable (and then some) as my other girl pregnancies. It has followed the pattern exactly, only varying slightly in severity. Gabriel's was my mildest HG by far, to the point that some days the HG was almost more like normal morning sickness. My body responding to treatment with just one medication, and I felt pretty sick, but it was much milder than my pregnancies with my three girls. (This also means that, hopefully, any future boy pregnancies will be less severe, HG-wise.)

I also heard about this one theory that you can predict the gender of a baby based on which side the baby implants in the uterus. I have no idea if there's any truth to that, but all three of my daughters nestled into the same side of my womb, and Gabriel found an entirely different spot. So, there's that.

I can't know for sure in this life, but it was further confirmation that gave me hope that maybe, maybe, Gabriel really is a little son.

I have a lot of friends who have lost babies to miscarriage or stillbirth, and I think one worry at the back of my mind was...what if I end up loving my newest baby more than Gabriel?? What if this new baby just felt like a "replacement baby"?

Surprisingly, my love for Gabriel has only grown with the life of his younger sibling. Our Gabriel is now a big brother, and in the depths of my heart, I can sense the ways that he is fulfilling that role. I can feel his prayers for me, for his baby sister, for his daddy, and for his big sisters. He is still, very much, a part of our family. We talk about him, think about him, pray for him and ask his prayers most every day. And my love for him hasn't waned one bit. It's only grown.

I monitor my fertility, and I know what my "signs" look like when I'm able to conceive a child. The cycle that we were blessed with baby sister was the last possible cycle that I could get pregnant before Gabriel's due date. I had heard from so many people who told me that they lost one baby, and then - before that baby would have been born - they conceived another. And I'd heard from so many moms that there was a kind of healing in that. The youngest child wouldn't have existed if the older had lived, and there was a consolation knowing that two children existed in a span that would normally only allow for the one.

I knew that it didn't seem like I would be able to get pregnant, and I had reconciled myself to the fact that I wouldn't have that consolation, "rainbow" baby before Gabriel's due date. I've had issues with infertility, and it didn't surprise me that it wasn't easy to get pregnant after Gabriel. Although we had tried and hoped and prayed, it didn't look like I was pregnant, and I was convinced I wasn't.

When I got the positive pregnancy test...I was in total disbelief. I still didn't believe the second test, or the bloodwork. When our first ultrasound showed that we might be losing our newest baby, too, I was heartbroken. The child who I could barely believed existed might not make it after all. I lost it.

And then two things happened.



First of all, I realized that our newest baby had a big brother who was (most likely) in heaven. A BIG BROTHER. Of course he would want to pray for her. So, I asked him. I am convinced that this sweet big brother not only prayed for the existence of his baby sister (to console his poor mama's heart) but that his prayers may have also been what saved her life. Since that first ultrasound, her growth has been absolutely perfect.

Secondly, when I was driving home one day, it hit me - St. Rita wanted to be the patron saint of this pregnancy and this child. The same way that I felt that St. Joseph wanted to be Gabriel's patron, I felt that Rita wanted to be our newest baby's patron. St. Joseph is the patron saint of a happy death, a fitting patron for our third child. What was Rita? The patron saint of hopeless causes. It came to me so suddenly, out of the blue, but has given me much peace this pregnancy. I have no doubt that Gabriel is collaborating with her.

In my lowest moments this pregnancy, the times when it felt like I was dying (even though I knew I wasn't...because hyperemesis gravidarum feels like you're dying, since you end up living your days focuses on basic survival and in bed or making visits to the hospital, like someone who is terminally ill) I asked Gabriel to pray for me. I asked him to pray for his baby sibling. And that gave me peace. Knowing he still has a very real role to play in our family means so much. And now, knowing that he is the only brother to three sisters??? Their future boyfriends don't stand a chance against the intercession of their brother.

Mass has been a real consolation to me, since losing Gabriel, since I know that at Mass the veil is briefly lifted and we get a glimpse of heaven. All the saints and angels are present at every Mass. That means that I can have great hope that, at Mass, my whole family is briefly reunited through the  presence of Christ in the Eucharist.

One Sunday, though, the reality of that really hit me. I was sitting in the pew, praying after Communion. Baby sister was kicking me in utero, Maria came over for a snuggle and a prayer, and then even Therese came over, to join in our snuggling. Suddenly, it hit me - every time I go to Mass with my family, I am a mother of four. I get to embrace and pray with my Therese, my Maria, my Gabriel, and my youngest daughter. All six of us are reunited.  We are reunited in Christ, just as we will be one day in heaven.

I've often felt jealous of those mamas with pews filled with little ones. But that moment, embracing my three living daughters and knowing that - through the Eucharist - my son was with me, too...I felt like the richest person in the whole world. The reality of four children hit me. There were four little fruits of our marriage. Four little children we existed because of our vocation to marriage. Andrew and I, when discerning if we were called to marriage, often wondered what God's special plan for us would be. And in that moment, I could tell you. I could name four people who are part of that plan.

And you may not be able to see a pewful of children beside us at Mass, but that's the reality - in the seven and a half years of our marriage, we've been blessed with four children. Four children! There once was a time when I wasn't sure if I would ever be able to have any children. And we have four! And at each Mass, reunited with Christ, and through Him with our Gabriel, we are a big family. We are parents, once again, of four children. Four little souls who pray with us at each Mass. That reality blows me away. 


Awhile back I wrote: 

Because here's the incredible thing. I have this sense that Gabriel's story is far from over. I have this sense that he is paving the way for the rest of the family. I have this sense that all five of us are still connected, connected in a way that no one else (save future, hopefully living children) can ever be a part of. Gabriel is a part of us. He always will be a member of our family. Nothing can ever change that. But he is now a part of something bigger, something we don't understand yet.

With the existence of his baby sister, I'm beginning to get a sense of God's plan for Gabriel. It's only a small piece of that plan, but I now know that his intercession for his family is part of the work he is doing now. I have a feeling that there is so, so much more that I don't understand yet.

And as my belly swells and our youngest daughter grows bigger, my love for Gabriel grows, too. He is still, so much, an integral part of our family. Heaven and the resurrection continue to feel more real to me than ever before. And we have a member of our immediate family of six, who has gone ahead of us and is praying us all along on our journey.

And my love for my youngest daughter? It grows more and more by the day, too. I am still often filled with disbelief that she exists! She is an incredibly busy, active little girl, but I still have moments when I feel her kick and wonder, "What WAS that??" And then I remember, "Oh, right. Baby. I'm pregnant." I have been filled with wonder at the lives of each of my children, but the life of this child is the first I am experiencing with the knowledge that not every child survives. And so, with the passing of each milestone, each kick, each doppler reading of her heartbeat, each wave of nausea - I am filled with wonder. 

And I was reading over old blog posts recently, I remembered something else. I remembered getting into the elevator after the appointment where we learned we lost Gabriel, and having a brief, clear image of a healthy baby girl come to mind. It came out of nowhere but gave me incredible peace, as if God were saying, "There is another child coming after this." I had forgotten about that, but now I realize...this little girl is another piece of the puzzle. She is another part of the unfolding of the mystery of God's plan, in the life of our little family.

(Joining Rosie for My Sunday Best.)

Sunday, January 29, 2017

Book Review: A Sea Without a Shore

One of my favorite things about the work that I do - my writing, my speaking, my media/blogging work, and my work with the National Catholic Partnership on Disability - is the amazing people I've gotten to know.

One of those people is Jeannie Ewing, fellow writer and fellow member of the NCPD's Council for Intellectual and Developmental Disabilities. We also have three children that match up just about perfectly in age (including our in-utero children) and I think it's a cruel twist of fate that we don't live in the same town so we can have tons of play dates and get to geek out about theology together. ;-)

One of the other things that I love about Jeannie is how she uses her theological knowledge to lead others on their journey to God - especially those in the midst of pain and suffering. Jeannie is no stranger to suffering in her own life, and she has written beautifully in her previous books about the grace that can be found in the midst of it. She has used her own experience as a caregiver of a child with special needs to help other parents navigate those waters. And she's also written about the process of grieving and finding hope in the midst of it.

In her latest book, A Sea Without a Shore - Reflections for the Brokenhearted, Weary, and Lonely, Jeannie offers her usual depth in the form of a devotional. This isn't an academic theological work on suffering - it is a work of deep reflections, meant to help those in the midst of difficult challenges find hope.



From Amazon's description:

"Everyone experiences suffering and trials throughout life, whether in the form of death or significant loss of a relationship, finances, a home or job, and even a pet. Loss affects us all, and we are often left feeling empty, lonely, and lost in the midst of such excruciating darkness. Others may attempt to ameliorate our fears, concerns, and struggle, but to no avail. Even our faith may seem to fail us. Jeannie Ewing understands that holy darkness may veil us in a cloud of unknowing for a time, but we don’t have to capitulate to despair. Instead, we can journey through the mysteries and misunderstandings through the eyes of faith. In A Sea Without A Shore: Spiritual Reflections for the Brokenhearted, Weary, and Lonely, you will find a familiar friend journeying with you throughout the often murky and tumultuous waters of grief. No matter the cause of your pain and strife, this devotional will offer short but poignant insights that open your heart to God’s love and mercy."

I received a copy of this book in exchange for my review, and I will tell you...if you are in the midst of loneliness and suffering, looking for a way to address this in your prayer life, this book is definitely worth a look! You can find her book in paperback and Kindle form here.


Saturday, January 28, 2017

On the Grace of Perseverance (at 17 weeks)

I'm 17 weeks pregnant this week.


This pregnancy has followed the pattern of my first two. Once I hit 14-16 weeks or so, the hyperemesis gravidarum shifted. I went from moderate HG, spending all day every day in bed, throwing up every night, struggling to eat and stay hydrated...to mild HG/bad morning sickness. What does that look like?

The good news is that I'm not spending all day, every day in bed. I do need to retreat back to bed by mid-late afternoon, and stay there (or else I start having dry heaving fits and occasionally come close to throwing up). But I wake up at 7:00 a.m. or a little earlier every day....so there's a lot that can be accomplished in those hours. We were able to continue homeschooling while I was so sick (although we took some time off during Advent- I purposely started school a month early in case we were blessed with a new baby this academic year), but it's so nice to not being trying to do everything electronically (just looking at the Kindle Fire screen makes me nauseated, remembering how much time I spent looking at that screen when I was so sick). 

We've moved our school supplies and work back to the playroom, which is next to our bedroom and requires less walking around for me. It's nice to be able to be cracking open actual paper books, and doing calendar time, and checking worksheets. We've also spent this month participating in the Gameschool Challenge over at My Little Poppies, and we've had so much fun spending time playing games together in the afternoon. Maria is currently obsessed with Zingo, Therese is enjoying checkers, and both girls are loving learning how to play chess with the help of this game. I started learning chess around kindergarten, and I love that I get to continue that tradition. ;-)



We can usually get through our main subjects in a couple of hours in the morning - Math, Reading, Handwriting, Art Appreciation, Religion, Literature/Before Five in a Row (Maria's preschool curriculum), music, poetry, and Latin. It sounds like a ton, but it really isn't! We use Mother of Divine Grace, which is an accredited, classical curriculum, and I substitute in Handwriting Without Tears (Therese's pre-K class used it last year and she and I both love it), All About Reading (pricey but fantastic phonics program that uses the Orton-Gillingham method, a method highly praised by one of our old speech therapists), Modern Curriculum Press Math (which I like, but which I'm not particularly attached to, so we'll probably switch over to Abeka next year, like MODG recommends). The subject that they beg for (and that I pop on for them every day while I make lunch) is Song School Latin. I can't recommend it highly enough! We just listen to the songs and watch the videos right now, but we'll probably use the worksheets with Therese next year. The girls are in love with Simeon the monkey, and their Latin professor father (and his students) get a kick out of occasionally hearing them say, "Salve, Pater!" when they seem him. This program makes Latin mainly a game, so they adore it. They have a version for Greek, too, which I might get next year. 



So, if you can't tell...I really enjoy getting to teach them. Breaking up the occasional fight or dealing with the occasional tantrum/screaming fit isn't fun, but it also seems like such a small price to pay for getting to be out of bed and spending time with them!

When my nausea is at its worst (so, pretty much all of my first trimester) the only thing I can do is read books on my Kindle Paperwhite. Out of curiosity, once I got into my second trimester I decided to update Goodreads to figure out how many books I had read or re-read from the end of October to the beginning of January. I can't recommend the exact number, but I think it was right around seventy. SEVENTY books. Lots were kids classics or re-reads, but I also read some classics that had been on my list forever (I spent Christmas week reading Gone With the Wind, and followed it up immediately with Uncle Tom's Cabin, and the pairing was probably one of the most fruitful I've ever had in my reading). When I realized how much I had read, I decided to make myself a reading list for this year, and am already plowing through it. (Grapes of Wrath has surprisingly been one of my favorites so far this year, although I'm in the midst of Vanity Fair and Viper's Tangle and loving them both!) This has been the case in each of my pregnancies - my reading life has spared my sanity. It has reminded me that there's more to life than my nausea. Even when my body is weak, my brain can keep learning and working and pondering, and that is such a blessing.

Right before this pregnancy, I became the social media manager for our Archdiocesan Office of Natural Family Planning, and I also had two speaking engagements that I booked ages ago and happened to fall in my first twenty weeks of pregnancy. Thankfully, all of the above has been able to be done remotely (via e-mail, Google Hangouts, and , and that has been a blessing, and actually has worked out really well. and the wonders of Windows Movie Maker). Being able to still do work for the Church while being so sick has been a huge sanity saver, too.

I've regained all the weight that I lost during my first trimester, and starting gaining weight on top of that (i.e. weight toward my official pregnancy total). I can stay better hydrated, and tolerate more foods. I can go to Sunday Mass. I can walk short distances without getting a pounding heart. I even showered standing up this week...which is huge!

So, that the amazing, wonderful news. The baby is healthy and kicking every day (and we'll hoping get to find out if this is a little miss or mister next week). I'm able to do more around the house, to relieve Andrew of a lot of the burdens he took on for all of those weeks. 

But, I have to be honest...there's another half of it. 

The other half is the fact that I still feel nauseous all day, every day, and will until I give birth. The nausea is much milder in the morning (and when I wake up in the middle of the night), and just builds as the day goes on. I typically need to spend evenings and nights in bed, so I can't hang out with friends, eat dinner with my family, or even spend a lot of time with them in the evening. If I talk to much or am up too much in the evening, it leads to a dry heaving fit and me praying not to puke. Even during the days, I have to be mindful of not doing too much, although I can do more as my physical strength returns (it usually takes me a month or two to regain the strength I lost from being in bed for so long). We've been needing to avoid being too social, because if I were to get a cold or stomach flu, I could have a major HG relapse. (I got a cold over Christmas, and it resulted in weight loss, dehydration, and throwing up.) But even as I'm strong enough to spend more time out of the house...I won't be at my usual level of functioning for another 5-6 months or so. 

The good thing is that, at this point, those around me around suffering much from this. I'm able to be present to the girls all day. Andrew is still having to take on extra responsibility and make extra sacrifices, but is getting some relief as I'm able to take on more. And the baby is thriving, and we're well past the point where my HG could be dangerous for him/her. The only piece of the puzzle left is me. 

I've been looking back at some of what I wrote during Maria's pregnancy, and finding comfort in the knowledge that I've survived this process twice before. But at this stage - I start to feel overwhelmed. I start to panic when I realize I will still feel miserable and nauseous for at least another 5 months, if not longer (the nausea lingered for a while after I gave birth to Maria). I'm also aware of the fact that I could have a repeat of my last post-partum experience with kidney stones. And I try not to feel too afraid, too overwhelmed. I try to just focus on getting through one day at a time - enjoying the days when I'm doing really well, and resting more on the days when I'm not. 

But the reality is, as most HG moms will tell you, this latter part of pregnancy is hard in an entirely different way. I seem to be totally normal, smiling and going through my day. But I feel miserable all day, every day. Relentless nausea for so many months wears on you. It wears on your sanity. It is hard. And it's hard to still be cheerful and kind when you just feel so miserable. I'm still on four different nausea meds, including my lovely subcutaneous pump. And even on four different nausea medicines, I still feel nauseous all the time. It sounds like something so minor, but imagine a time you have been really nauseous - a bout of motion sicknesses or stomach flu - and imagining feeling that way non-stop for at least eight months. You would go crazy!

HG can be so isolating. so lonely. Because it is a rare condition, most people haven't experienced it or anything like this, and it can be hard to explain to someone else. Thankfully, I've been able to join an amazing HG Facebook group, and it feels like such a relief to talk to women who know exactly what I'm going through (many who are even sicker than I have been, and some of whom have nearly lost their lives to HG). 

But there is still this struggle, this struggle to not give up. The struggle to maintain friendships when you can't talk on the phone, or have friends come visit, or hang out with anyone in the evening (which is when all family/friend dinners, mom's night outs, and social get togethers seem to happen). The struggle to not be too hard on yourself when you aren't able to function as fully as you're used to. The struggle to not constantly snap at every person in sight because you just don't feel well.

So, I pray for the grace of endurance, and perseverance. I normally have antenatal depression begin to kick in by now, but having so much support this time around has made a huge difference. The care and concern and prayers of so many people have made a huge difference.

And my Gabriel has made a huge difference, too. He showed me that there is something worse than HG. And his prayers...his prayers have sustained me like nothing else. It sounds strange, but this little big brother has already done so much for his younger sibling. I've struggled with infertility in the past and chart my cycle, and although we were certainly hoping that we would be able to have this child...it shouldn't have been possible, given my specific history. And after that first scary ultrasound, it didn't even look like this child would make it. But here I am, more pregnant by the day, and still in total disbelief. I can't believe that we've been given this child, and that this child continues to survive (and make his or her presence known in the form of the world's most adorable kicks). I'm just in such disbelief, and so incredible grateful. Before Gabriel, I knew that each child is a gift - but now I know it with more certainty than I ever thought possible. And the love in my heart really has grown. I love each of my four children more than I could ever say, and am so grateful for their existence. Every time I hear my girls talk about their baby brother, it comforts me. And every time I ask him to pray for his baby brother/sister, I feel such peace. He will always be a part of our family. 

Many times a day, I tell my girls how grateful I am for my children, and how much I love them. Every night, we ask God to bless each one of them by name. And every time we talk about the children in our family, Gabriel's name is sure to be mentioned. I am so grateful that he is the big brother of this child, and that his love for our family is still so felt. We certainly love him.

So now, two prayer intentions. Please continue to pray for the health and survival of this sweet newest baby. And please pray that God gives me the grace of perseverance in spades. The very real suffering of an HG pregnancy is so hard - but I believe with all of my heart that it is worthwhile. I believe each of these children are worthwhile. I would trade them, or their pregnancies, for anything. They were worth the suffering.



Long ago, back when I was discerning my vocation, I prayed for the grace to learn to love as Christ loves. I had no idea that this was how God would teach me how to love through suffering, for the sake of another. But honestly? Can you think of an easier way to learn that lesson? These four children of mine have taught me that suffering is as nothing, when undertaken in love. I don't always bear that suffering with patience, but I'm grateful for the opportunity to learn to love in this way. 

Honestly? Hyperemesis gravidarum, in all its awfulness, seems like such a small price to way for the gift of a Therese, Maria, Gabriel, and Little Baby in my life. They are so worth it. 

Saturday, December 24, 2016

Hyperemesis Gravidarum, Suffering, and Christmas

Sorry I left you hanging!

We've had two ultrasounds since my last post, and both have revealed a beautifully developing baby, with a strong heartbeat, debuting this summer! Here's a little wave from the newest member of our family:



However, not one to break with tradition...I've had hyperemesis gravidarum again. And it's the worst bout I've ever had. Hospital trips for IVs, multiple oral meds, and even home health for a subcutaneous pump. I keep telling Andrew that this pregnancy has made our marriage "level up", as he's by my side in the ER watching IV bags drain, held back my hair and cleaned out my puke bucket more times than I can count, and helped me change my pump site. The pump is really what made us level up. The medicine it pumps into me 24/7 is a skin irritant, and, since the tube is feeding medicine into my skin, we have to change its location every day or two. It leaves behind a lovely trail of bumps and bruises on my belly, but I think it's helping. Oh, but the catch is that my needle fearing husband has to assist me with changing the location of my tube, which...drumroll please... means watching me stick a needle in my belly every day or two! So, yes...our "in sickness" vow continues to be one we get to practice.

Despite more aggressive treatment than I had in any of my previous pregnancies, I'm sicker than I was for any of them. I have one foot out the door of my first trimester, and I still live in bed. This pregnancy motion, noise, light, talking, my phone screen, watching TV, touch (including the feeling of my feet touching, certain fabrics, plastic bags, etc.), smell, drinking, and eating have all triggered intense nausea as well as dry heaving and vomitting. I've lost weight, scraping by on 500-1000 calories on a good day (usually way less than 1000), and fight a battle against dehydration every day. I can't sit up or walk without feeling sick. I've missed Mass multiple times, and when I go to Mass I sit quietly in the pew and don't move to keep from getting sick. I use a wheelchair at the doctor's office, because walking through the building to get to it would make me too sick otherwise. For just about two months, I've spent almost every day, all day, in a dark, quiet bedroom, by myself (save when I've been on duty watching the girls...then I have to leave my door open so I can supervise from bed). It's been incredibly lonely. Talking on the phone or being around people makes me sicker, so I've had to be mostly cut off from everyone. Adding to that all the stress and worry that comes with a first pregnancy after a miscarriage and it's quite overwhelming at times.

I share all of that, not to say, "Woe is me!" But because hyperemesis gravidarum is so rare a condition (often confused with normal morning sickness) that people don't understand it. It's hard to understand the toll of being a young, healthy woman who is suddenly too ill to leave bed for months. A woman with hyperemesis gravidarum lives like a terminally ill person for months...And sometimes, you forget that you're pregnant, not dying. You forget what it's like to eat, drink, walk, and talk without it all causing you to throw up and be crippled by nausea.

This is my second time that I've had HG at Christmas. Unlike last time, I am too sick to even have Christmas lights in my bedroom (because light is a trigger). Since I've been stuck in bed, I haven't gotten to partake in any of our Advent traditions, didn't get to decorate the tree (or even be well enough to lay on the couch and look at the lights). I can't eat Christmas cookies -let alone bake them- or partake in the usual Christmas treats. I can't sing Christmas carols, and I'm often too sick to even listen to them. I can't watch Christmas movies. I can't enjoy the company of family or friends. I can't eat a Christmas meal with loved ones.

Lots of moms with HG struggle during the holidays. There isn't the guilt of, "I didn't get to do everything I wanted to do with my kids!" There's just the realization, that, "I didn't get to do anything."

But something strange and wonderful happens. When you've lost all the trappings of Christmas - the lights, the food, the music, the parties - you're left with only one thing.

The Christ child.

If I can do almost nothing else, most days I try to read the readings for the day. And in them, I find an answer for my loneliness and longing. When life is literally darkness and loneliness, you find yourself straining to look for light. And as the days count down to Christmas, the daily Scriptures are full of promise. "Hark! My Lover, here he comes!" "He will come to you!" "The people in darkness, have seen a great light!"

All of us, whether we realize it or not, are yearning desperately for that light. But normally, it's easy to forget that. It's easy to forget that suffering borne for love, is what Christmas is actually about. It's easy to forget the longing for Christ and heaven imprinted on each of our hearts.

But when all the comforts, company, and festivities are taken from you by suffering, you are able to realize what they are all for. You are able to approach the manger with empty, yearning hands. When you have no Christmas feast to look forward to, but the hope of being well enough for Mass
..you long for that feast. When you feel so alone, you realize that, in the end, He is all you have. But you also realize what those poor, cold shepherds did on a Christmas night long ago...He is enough.

The first Christmas was one of great joy, because Love Made Flesh, embraced suffering for love of us. He was born in a poor, strange place, not a palace. He did not choose a life of ease. He choose to bear suffering for love of us.

That is the real meaning of Christmas. The great love of a God who loves enough to suffer by taking on our human nature. To suffer, even as a newborn, in a cold, poor stable.

We don't think of Christmas and suffering being so intimately connected, but they are. Don't you see? The cross is foretold by the manger.

In realizing that, I've found comfort. As with my other three children, I love this fourth child with all my heart. I have suffered so much this pregnancy, but I willingly embrace it because of how passionately I love this child. I willingly bear suffering, for the sake of love. When I said my wedding vows, I never imagined this. I never imagined how real God would make His love to me, in the midst of suffering.

And so, it is in suffering in love for this baby in my womb, that I've been led in adoration to the Baby who chose to suffer for love of me. In suffering in love to bring forth life, I am reminded of the One who suffered that I might live.

Because, don't you see??? The whole Incarnation has transformed our human suffering into an opportunity to partake in the Divine love.

Dear one, if you are reading this and suffering in any way this Christmas, know...You do not suffer alone. For God chose to take on flesh, so we needn't ever be alone in our suffering again.

And, in a real way, if you are suffering in any way this Christmas - as many are - know that you experience Christmas in a more real way than it seems. Know of the incredible love of that Child in the manger for you - the love of He who chose to suffer in love, so that you would know that you are never alone.

Merry Christmas!

Sunday, November 13, 2016

Not the Path I Planned for Myself

Just a few short weeks ago, I took a pregnancy test on a whim. Surprisingly, it was positive.

I'm currently pregnant with our fourth child.

Even looking at this screen right now is significantly increasing my nausea because...you guessed it...I have hyperemesis gravidarum again. It's quite possibly my worst HG yet, and I'm most bedridden, even while on two strong anti-nausea medications.

This should be cause for so much joy. But unfortunately, a week ago, I went to the doctor for my six week ultrasound...and all they could find was a yolk sac. If you know alot about embryonic development, you know that a six week ultrasound with only a yolk sac is not necessarily a death sentence. But you also know that many babies are seen on ultrasounds at six weeks, hearts beating strong.

I'm going for another ultrasound in the morning. I ended up needing to switch doctors because the first ultrasound for this baby was held in the same room as the room where I found out that we had lost Gabriel...and I just felt like I was re-living that trauma. I'm not naive, and I know that doing an ultrasound someplace else does not mean my baby will be fine. But even if the worst happens, it will not happen in that room that forever stole my innocence.

With Gabriel, I had mild hyperemesis gravidarum. With medication, I actually didn't lose weight (in fact, I gained weight), I could only eat particular foods but eating was doable, and I could spend my days on the couch. Despite that fact, it was still harder than your average pregnancy, and it made losing him that much harder. Moms with HG cling to the hope that their suffering equals a healthy baby, and when that hope is robbed from you, it's hard to go on.

With this little love, I have moderate hyperemesis gravidarum. Even on two strong anti-nausea medicines, I spend my days in bed, in a dark room. Thank goodness for technology, because I'm able to cover all of our school work electronically and Therese hasn't fallen behind at all. And double thank goodness that we live in a relatively small house, because I can lay in bed all day and know exactly where people are and what they're doing at all times.

But despite that fact, at seven weeks, this pregnancy has already been incredibly hard. We had to return our sweet puppy (the pregnancy wasn't the deciding factor, but I think it tipped us over the edge) because there is no way I could give her the care she needs right now. Andrew has to do everything for me - bring me food and drink, help me get dressed, help me with my medicine, turn the shower on for me and make sure that I have fresh clothes laid out. I can't be upright for long without feeling incredibly nauseous and often dry heaving, and talking for longer than a few words makes me dry heave. My tolerance for food and drink has been low, but so far I've been able to manage without an IV. I basically live in bed, and sleep when I can, since it's my only escape from the nausea.

But despite all of that, I would gladly go on this way for another 33 weeks. Because the first time I went through HG I ended up with this...


And after the second time I ended up with this...



And they have both brought me more joy than they can ever know. As I lay in bed every day and watch them play, and hear their little feet pounding up and down the hallway, I know...the suffering was worth it. Every moment of it was completely worth it.


The great consolation for a mom with HG is holding her living, breathing, healthy child at the end of her pregnancy. HG pregnancies are notoriously traumatic, and holding that child is the best balm for weary souls...which is why losing a child while suffering HG is so traumatic. 

But even Gabriel taught me something...it's all worth it. I haven't yet healed fully from losing Gabriel, nor from his pregnancy. But despite that fact, despite not getting to experience the joy of holding him in my arms (a joy I should have been experiencing any day now) I still believe the suffering that I endured for him was worth it. He made us a family of five, and helped point our family to heaven.

And this little bean has made us a family of six. Nothing can ever change that. Not even if we lose this one can we ever change the fact that we are a family of six.

But that being said, I hope with all of my heart that this will be the child who lives. Were I to lose this one, I would lose this one when I should have had Gabriel and I can't bear the thought of that double grief. This little one would also be due right around my birthday, and I hope very much to hold a living baby of mine by my 31st birthday. I hope with all of my heart that God will let us raise this little one.

I know a lot of women who have lost children to miscarriage or stillbirth, but I also know many who haven't. And I can't help but feel jealous of them, and of their innocence. I wish their innocence was still mine. I wish I could rest in the certainty of holding a newborn in my arms, come June. It would be worth 8 months of nausea. 

But the reality is - none of us has that certainty, ever. All we can do is trust in God.

That being said...I hope so very much for good news tomorrow morning. I hope to see a healthy baby, with a strong heartbeat, measuring right on target. Very early on in this pregnancy, I was driving and I suddenly wondered, "Who is this baby's patron saint?" In an instant, St. Rita came to mind. It was crystal clear and definitive. So, I've been asking people over on Facebook to join me in a novena to her, for baby's survival. Since Mother Angelica's name was Rita, I've been asking for her prayers, too.

So, please...join me in praying for a miracle. Please join me in praying that this baby will live.

St. Rita, pray for us.

Sunday, October 23, 2016

Getting Me to Heaven

Oh, these children of mine.

I just keep learning from them.


Our oldest just turned six, and that feels surreal. She was (and is) a very compliant child, but she certainly taught me so much about life and mothering. She is the one who made me a mother.

Our second is three years old, and that implies everything you think it does. She can be the most affectionate, tender person I have ever met...or she can be more spirited than I feel capable of dealing with. It was easy with our first to think that we were good parents...but this little girl reminds us that we need so much grace to parent.


And, of course, there's Gabriel, who taught me that all of my children are gifts...and gifts that can never be taken for granted.





But even after almost seven years as a mother, I still get thrown an absolute curve ball sometimes. One of the more recent curve balls was courtesy of my lovely three year old who came into contact with a bat. We were touring a tall, beautiful tower and...she found a sleeping bat on the wall. She thought it was cute. She reached out to touch it, and we still don't know whether or not she petted it. We thought about it a bit (since she didn't seem to have been bitten and scratched) but since a bat sleeping by itself in broad daylight seemed weird, and there was a rabid bat found in our county in the last month, we decided (along with her doctor) to go ahead and do a round of rabies shots. Did you know, by the way, that untreated rabies is pretty much 100% fatal? Yeah. Not something to mess around with. (Ironically, her final shot from bat exposure is on Halloween.)

Anyway, she and I had had a really rough week the week before, but then this whole rabies/bat scare thing happened and it helped me realize how much I love her and don't want to lose her. Now that she's halfway through the rabies shot series, my patience and feelings of tenderness have waned. But I still realize...I don't want to lose this little one. 

And honestly, that's how I feel about all my children, after losing Gabriel. Before Gabriel, losing a child felt like an abstract, scary possibility. Now that I've experienced it, it feels too possible.

But in order to properly love my children, I'm having to learn to trust God. I am so bad at it, and I'm convinced that my purgatory will consist of God asking me over and over again, "Do you trust me? How about now? Do you trust me know?"



It's a slow, slow process. I'm trying to learn to trust. But really, so much of the time, I still just feel so afraid - so afraid to love because I may lose.

And then, sometimes, I see God provide so unexpectedly and wonderfully for me even in the midst of loss. The pretty little Marian shrine in these pictures is a beautiful example of that. I grew up in the Chicago area, and never had any desire to leave. When we discerned that God was calling our family to move further south, it broke my heart. I cried in the car on our first trip down to visit our new city.

Over five years later, I am so grateful for this new home of ours. We have been blessed with incredible people in our lives, with friends and a community that I could never have imagined. And the fact that my husband is now a seminary professor and I can be an active part of helping him live out that vocation? It is all such a gift.

But despite all of that, I've really been missing living near the Great Lakes. I miss standing by an open body of water, the soothing beauty of waves ebbing and flowing, the hum of boat motors. Even though we live near the Mississippi River, the part that passes through the city and south of the city is brown and murky and gross looking.

Then, one Saturday a few weeks ago, I drove up north to go to a book sale. When I arrived, I saw a sign saying that the sale wasn't until the following week, and I decided to just drive and explore. What I found was an entirely different Mississippi River than the one I'd known for the past five years. I found a wide, blue, beautiful body of water that reminded me of the harbors and the channels of the Great Lakes. I found a riverside town that reminded me of the lakeside towns tucked throughout Michigan. And for the first time since moving down here, I felt like that longing was satisfied. While I was in that small riverside town, I even found an unlocked Catholic church to sit in and spend some time with my dear Jesus in the tabernacle. It was unexpected and beautiful and it filled me up in a way that I didn't even realize I needed to be filled.

When I said yes to God call to move (and stay) down here, I thought I was saying goodbye to places like this. And now, God has given it back.

And it's moments and minutes and hours and days like that that fill me with hope. The cross will always be there, but God will also, somehow, always provide.
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