Friday, October 16, 2015

Special Needs

There are a whole hell of a lot of things that I have learned since becoming a mother.

One of those things is that I am glad that I did not have expectations about what my child would be like. This turned out to be a good thing since I never would have guessed that my child would have Epilepsy.

Although I am almost always able to put things in perspective and appreciate the fact that Shrimpy's Epilepsy isn't severe, is well managed, and hasn't caused any delays as far as we can tell, sometimes I don't want to be reasonable about it.

Sometimes I wonder what it would have been like to have been typical first-time parents- freaking out about little things and having sleep as the biggest worry. I also dream about what it would have been like to have had two weeks off with Broom and Shrimpy, getting to know one another and letting my body recover from birth.

Instead I was on my feet within the hospital and lost a lot of blood, healed badly, had edema on my feet and hands, a bout with depression, PTSD and nightmares. Instead, I kept my baby within eyesight for longer than I care to admit- first in person, then with a video baby monitor. My biggest worry was that I would miss a seizure, she wouldn't breathe, and she would get brain damage or die. I had a lot of anxiety about all of those things.

Those are hard words to write. But I learned to "feel" her moods and try and just let the risk be. Will it be there for a long, long time. Will it ever go away? I really don't know.

But I also know that there are mothers out there who would be happy to "just" have those worries.

I know I am lucky, and I know that I am strong, as is Shrimpy.
Somehow, through all of that, we managed to breastfeed for 13 months.
Somehow, we managed to not let Epilepsy rule our life.

Do I wonder what life would be like without a bed monitor and video monitor for my Shrimpy? Do I wonder if the medicine made her personality different? Sure.

Luckily, most of the time, I don't wonder if we are doing the right thing because it just feels right.

These things make our family feel good:
- We speak openly about her Epilepsy so that she knows there is nothing to be ashamed of-we are even working on her learning on how to give herself her medicine
- We don't ask for her to be treated differently- but we do avoid her triggers (so, sleep is holy and disco balls are not our friends)
- We don't watch TV with her- screen time is limited to an occasional Sesame Street song on a cell phone
- We keep to a schedule that we try not to make too busy and think twice about when we decide to act outside of it

So, on today, like every other day, I will let myself mourn the life I didn't have while concentrating on the awesome life I do have- with an amazing wife and wonderful child who never ceases to amaze me.

Shrimpy may be special needs in her own way- but I have come to the conclusion that each child has their own special needs and each life has its "normal".

Wednesday, July 29, 2015

What do you want to be when you grow up?

For a long time, I thought I would become a doctor. Coming from a family of medical personnel, it seemed doable. Until I had high school chemistry. Which I hated.

Then, I thought I could become a writer. But, then I realized that the world is full of writers and that it is very hard to make a living as a writer.

So, I decided to do what I was good at, and studied languages.
Since I didn't want to be a translator, I got an MBA and went into marketing.
It turns out that marketing managers often aren't nice people and I have trouble caring about selling stuff that helps no one and in fact could hurt people. So, I transferred to HR.

For awhile, I thought I was helping people because I could help them get answers and lend an open ears in time of stress, etc. For awhile before my leave, it felt like I started to drown in nonsense. Like we no longer treated people as capable adults. We also added so many processes that our processes have processes.

To add insult to injury, the strategic projects that I was in charge of before are now gone since my replacement wasn't qualified to do them. And now, since my boss is having trouble getting meaningful work for herself as well, which understandably means that most meaningful work she keeps for herself.

In a nutshell: I am bored and I feel like 85% of what I do is meaningless and treats my "customers" like they are utter idiots. It is hard.

A part of me feels like my inner hippie needs out- in reality I see myself as a darn crunchy mom and friend who would love to do something where it would matter if I didn't do it- something where I am actually helping and / or writing- doing something more freely.

If only it weren't for those pesky student loans that I probably have 10 years or more left to pay back on. Or maybe, just maybe, I can do both. It would be a lot of work, trying to write enough on the side, but who knows- maybe I would finally feel like I am what I should be, now that I am a grownup.

In the meantime I am trying my best not to let the stress of work get to me and put off the feeling that my cells are slowly bonding with my outdated desk as I sit away my days- at least I earn a good wage (and I am grateful for what it provides us!)- but sometimes things get so ridiculous and nonsensical that I want to run away screaming.

Writing instead seems to be helping for now, at least.

Tuesday, July 21, 2015

Oh, hey. silence?

I would apologize for writing, but the truth is, I am not sorry. Turns out I needed the time to come more fully into my role as a mother and enjoy our little family oasis before starting work again in February 2015.

Now, I feel like I can write again- but where to start?

With the little one, of course!

Luckily, we are all doing well. Shrimpy still has her undefined form of Epilepsy but had her last petit mal in October of 2014 and her last grand mal in April of 2014. She has myoclonic seizures at times, but they haven't influenced her in any way other than being a pain since she gets them in that in-between falling asleep phase (imagine a whole body jerk- like those that everyone has at some times, but with 50 in 30 minutes- that is how we knew they were epileptic). She doesn't seem to have any other type, and we have her down to 2 medications and want to see if we can get her to 1 medication this year if possible.

Her development is right on track if not a little ahead, which we are over the moon about. Her head circumference is a little on the small side, but it isn't noticeable. There could be a connection between that and her Epilepsy, but it is hard to tell. She has been walking since the end of February, which is also when she self-weaned (probably because I started work at the beginning of February and my daughter doesn't like to expend too much energy if she doesn't have to). Her vocabulary has been growing in leaps and bounds in both languages and she has been to the US twice now. She is sweet and funny and stubborn and curious and I love her so. We got our first choice for her daycare and she runs in without saying goodbye. It is awesome and pulls on the heartstrings a little too. She runs towards us giggling when we pick her up though, which totally rocks.

What else?

Broom and I are great. Our 5 year wedding anniversary is in September, which is just crazy. Life gets hectic every once and awhile and we have to remember to take time for one another- but I think many couples have that. We moved in April due to mold in our old apartment and our new one is definitely much bigger and nicer- two floors and lots of space for when we decide to end Shrimpy's status as an only child. That project should be starting soon- and the plan is for Broom to carry! We found a naturally-oriented gyno who I really like, and I hope she feels the same way. The gyno has agreed to help us all that she can in our future child making endeavors.

Going back to work has been anti-climactic. My job was adjusted for the woman who replaced me and since she was less qualified than me, a lot of tasks are gone and I am quite honestly, bored (I am aware that that sounds like I am putting myself on a pedestal, but it is very much a different job). I am working on getting them back and also applying when new jobs come up. We will see where it takes me. All in all, the transition has been ok though. Do I wish that my job was stimulating and fulfilling so that I didn't feel like the cells in my body are turning into the same material as my outdated desk? Sure. But I know I am damn lucky to have a job, and it makes a lot of things possible for us which I am grateful for.

Thursday, July 24, 2014

A pat on the back

As you can see, my resolution to blog more frequently is more easily said than done.... but I am doing my best to keep all guilty feelings in check- which, with a Catholic school upbringing nicht immer einfach ist.

However, given our past with Shrimpy, I think getting caught up in day-to-day things is something that I can really be thankful for, and I have really been enjoying the small stuff.

As of this writing, she has been seizure free for 3 months and 8 days. Every day without is truly a gift. We have slowly been reducing one of her meds since 3 is a lot, and (**knocks on an entire forest**) it is going well so far. I am still processing the trauma that we have been through, but think that it will take a long while. Perhaps I will seek out a therapist, but I'm not sure yet. My nightmares have gotten better, and I can sometimes forget that we have the threat of seizures breathing down our necks and am determined to have us all live as normally as possible.

Since my last post post concentrated a lot on the hard realities that we have been through, I am going to brag a bit, and list the things that make me proud at the moment because I can:

- Shrimpy and I exclusively breast fed for 6 months (despite 2 illness periods where she was too weak to drink)! In fact, we have somehow managed to have no major difficulties other than the times she was ill. I feel really lucky that our breastfeeding relationship has been so solid. On her half birthday, we gave her sweet potato to try out (baby led weaning). She isn't quite ready, but we keep practicing for when she is ready.

- We made the family decision to try having her sleep in her own room since all 3 of us were no longer sleeping well, and since then, we have all slept great!

- Shrimpy has a slightly smaller than normal head circumference, but everything else is normal. She has more than doubled her birth weight and has met all of her developmental milestones. She turned over in both directions in May and did it a few times afterwards, but has since been distracted with other things- like her feet!

- The few trips we have taken as a family have been great- with very little fussiness and no trouble sleeping elsewhere. Yay!

- We got a spot in our first choice for daycare- one right around the corner with phenomenal opening times meaning that I can work 40 hours if I so choose and don't have to miss out on too many meetings, even though I will surely find a way around as many as possible. We spoke with the manager there and she has already had good experiences with other children with epilepsy and even double checked with her staff to ensure that there were no prejudices against families like ours. Check and check!

My American brain can still hardly believe that I have been off work for so long and that I don't have to go back until February. With appointments, playgroups, meeting up with friends, and everything else that normal life and keeping up a household entails, time has really been flying by.

I truly cherish being able to rock my baby to sleep and nurse her whenever she needs it. Playtime and nap time and yes, I can even appreciate when she throws a tantrum because she now hates taking her medicine- because she is healthy enough to tantrum and we now know that her being upset probably isn't a trigger.

We have even found a babysitter that we have gotten to know gradually and had our first date night since my mom was here. It was a nice, brief time out for the first time and good for us.

All in all, it isn't easy living with the "what if" in the back of my head all the time, but I refuse to let Epilepsy scare me from having the most normal life possible for me and my family. Shrimpy deserves that, and so do we.

Friday, June 6, 2014

An undefined form of Epilepsy

First, I'd like to apologize for the radio silence. As you can tell from the title, a lot has been going on. This is bound to be a long post, although it surely won't cover everything....I've been writing and re-writing this for weeks, so we will see what direction my writing takes me and then I would like to keep up with my posting.

Please be warned- I will be talking about what Epilepsy can look like, and if you are sensitive to hearing about children being really sick, please avoid the area surrounded in *****. It is important to me to "tell you like it is", but it isn't easy to write, and for most, it won't be easy to read. 

On April 4th, not long after my last post, Shrimpy's seizures came back. Her EEG the week before had been completely normal, so we decided, together with her doctors, to start (very gradually) weaning her off of the barbiturate. The first seizure was "just" focal- so just her face and mouth. I heard the sound her mouth makes when she seizes- a sort of clicking sound with her tongue, and I was instantly ripped out of my sleep. I took her out of her bassinet right next to the bed and held her and talked to her, while filming it for the doctors. Since it was a focal seizure, she was herself again afterwards- so I gave her her medicine as planned and tried calling the doctor. Unfortunately, it was busy, and while I was trying to nurse her and call them, the had a generalized seizure- so her whole body, including her lungs. As I watched her lips turning blue, I figured "fuck it" and called German 911. While I spoke to the operator, it stopped, but I had them come anyway in order to drive us to the hospital.


In the next two days, she had 7 seizures. They returned her medicine to its previous dosage, and for the next 4 days, she had no seizures and was able to nurse again relatively quickly. We went home and had one wonderful night as a family. The next morning, she had another, and we went back to the hospital, where they told us, as long as she didn't have another, that we could continue with our weekend. We had just arrived at a meet-up for the parents and children for the participants of our birthing preparation class when she had another. In the next 4 days, she had over 40 seizures, reaching a max of 15 in 24 hours. All lasted about 2 minutes, and all led to a bad oxygen saturation level. Some doctors wanted to see what her level would drop down to before administering oxygen- but Broom and I were not having any of that and always used the oxygen- because who the hell wants to test that?!?

Her personality was gone, her muscles had no tension, she was too weak to breastfeed, and could hardly stay awake. They took blood, and her face made the crying actions, but she couldn't fucking cry! She was basically in a coma- and it took her 45 minutes to drink a bottle. It was horrible, and we began to worry if our Shrimpy would make a comeback.


During our stay in the hospital, they completed a new round of tests, including an MRI. They discovered that the seizures begin focally and usually turn into a generalized seizure. Her heart, brain, and kidneys (she has 3- because she is cool like that), all show no signs of damage. Her metabolism tests show no signs of a disorder, and the genetic testing for benign infant seizures showed an abnormality on one of the genes, but both tested negative.

Diagnosis- undefined Epileptic seizures.

Not entirely unexpected, and it could totally be worse- but still shit in a lot of ways. But, we are dealing- and her meds are good at the moment. Currently, her last seizure was on the 17th of April. Next week, we will begin working with the doctors to gradually reduce one of her 3 meds- because 3 is a lot for a 4.5 month old.

I am scared shitless, but I know it is the right thing.

From all of this, I can tell you that I know the following without a doubt:

- Shrimpy is SO incredibly strong- she and I got our nursing back on track really quickly, and she is ahead developmentally ahead at this point- something I am super proud of.
- Broom and I are a solid unit- if anything, this has made us even stronger.
- Modern medicine, the health care system, and parental leave program in Germany enables us to have time to deal with this as a family.
- Relatively speaking, if Shrimpy "has" to have an illness, at least hers is a common one, controllable with medication. She can have a normal life, and can develop normally, too.

So, friends of the internet- I think that that is enough for now. I will try and follow up more regularly, especially since I have a lot to say on the subject of Epilepsy and everything else that is going on, so I hope that I can find time to write again soon.

Take care of yourselves!

Monday, March 17, 2014

Two Months

Today, Shrimpy is two months old!

A part of me can hardly believe it, while another part feels it in my soul. When I think back over the last two months, with its healing, heartbreak, and joy, I just tear up with an overflow of emotion.

Since we arrived home, we have done a great job of being able to leave her medical history at the door, while still keeping an eye on her and being sure to give her her medication 2x daily. Without saying it openly, Broom and I have been occasionally holding our breaths as we watch Shrimpy grow while her medication dosages do not. With each gram that she gains, we know that her medications get weaker. The lack of seizures give us hope, that this is behind us, and next week, they will do an EEG to see what her neurons are up to. Hopefully, we will get the OK to start weaning her off of both of them, starting with the barbiturate.

One thing is for sure, her social smiles, trying out her own voice, and mimicry (which started at the beginning of February- according to the midwife, babies who go through trauma like that often make developmental leaps to catch up), her increasing ability to hold up her head, continued weight gain, and more effective nursing all point to an incredibly healthy baby.

We couldn't be more grateful for the normalcy that we have had, and the chance to really enjoy our daughter. Our experience has really put things in perspective. Sure, when she is crying, it can make us distressed- but, she is able to cry and express her needs- something she was unable to do in the hospital. Some days, it has felt like all she did was nurse during a growth spurt- but, she was able to nurse after only being able to take a bottle in the hospital (due to exhaustion)- something that isn't always automatic.

My bond with her feels whole now- something that wasn't the case after suddenly dealing with her sickness. With all of my hormones raging and the fear and helplessness that we had in the hospital, it took her being able to nurse again to feel like I could bond with her. A part of me wonders what my reality would have been had she not gotten sick, but I will never know "what could have been" and have been able to keep any guilt about being distanced at first at a minimum. When I logically think about it, I know that our connection that would have been happening with nursing from the breast couldn't happen- combined with the fear of losing her and getting her through everything to being healthy again- I think my brain did what it had to do and put me on mommy autopilot. I was able to care and cuddle and be there for her (Neither of us, of course, wanted to leave the hospital.), but the bonding was able to be re-vamped after she was stable and strong enough to nurse. Now, I feel like our connection is solid.

I feel honored to be the Mom of this strong, beautiful, smart little girl, whose developing personality I relish in almost every day. It sure as hell isn't always easy, but I am incredibly grateful for her and her easygoing personality. After all of the stress of the hospital, she started sleeping in 4-7 hour blocks at night, and has never really been overly fussy- we usually get up to an our or so of processing crying that isn't straight through- and not every day. I feel so lucky, and am glad that our family unit is so strong.

My relationship with Broom has strengthened and deepened in ways that I never imagined. I watch her with Shrimpy and my body tells me, she won't be our last. She is so supportive of my new body (which is, much to my surprise only 2 kilos above where I was pre-pregnancy- something I never expected- and I am eating all the time, it seems, to cover the nursing calories) and has never expressed anything other than amazement and awe in what my body has done. I feel like we are such a team- a parental unit- Shrimpy's tribe.

In short, I couldn't be more in love- more in love with Shrimpy, more in love with Broom, more in love with life!

Things have been busy, with grandparents visiting from the US, but life is really, really good.

Wednesday, February 19, 2014

Two Weeks in the NICU

Now that Shrimpy is a little over one month old, gaining weight consistently (4000 grams last week!), screaming at her sneezes, grunting at her hiccups, vocalizing and catching our eyes with hers- our stay in the NICU seems so long ago!

It all started in the middle of the night on Sunday the 19th. I was holding her in bed, trying to get her to calm down from crying to feed, when she seemed to have a fit, getting quite upset (it seemed to me), and then falling asleep. Exhausted, I decided to try later and put her in her co-sleeper and slept myself. Surprisingly, she didn't wake up again, and we changed her diaper when we woke up at 8, where she had another fit, then fell into a deep sleep. Broom and I found it odd, but had no idea what was going on, and knew the midwife was going to visit us at 10. While we waited, Shrimpy was too tired to nurse.

When the midwife arrived and I told her about Shrimpy's refusal to nurse (and she had been such a vacuum suction-feeder prior!), she looked concerned and said that she couldn't go that long without eating- and we explained that we couldn't get her to feed. While the midwife was holding her, she had another fit- after which she told us she was going to call the hospital to tell them that we were coming and that she was also writing the admissions desk a letter about her observations- all the while staying quite calm but making clear that we needed to leave immediately.

The 5 minute drive was hell- Broom drove well, though- considering this was her 2nd nerve-wracking drive in a few days, just a week after getting her license. The admissions desk was nice though, getting us into a room really quickly, despite the fact that that nurse was incompetent- failing to realize that we had no clue what was going on, and talking a mile a minute about other things, like weighing Shrimpy daily, taking her temperature and such- and we had no idea whether or not we would be staying! The doctor on call that day was also weird, coming in and picking up Shrimpy without talking to us or introducing herself. Once I realized that she was getting ready to leave the room with her I stopped her with "Excuse me- the nurse said that the doctor would be coming in to examine her?!?". To which she replied "Oh, yes, that's me, I guess I should have introduced myself."

That shift failed to ask us what we saw and why we were there, but did hook her up to sensors measuring her breathing, heart, and oxygen saturation and putting in an IV to rehydrate her. After several requests, I was shown where I could pump, since I wanted to get my milk coming in as soon as possible. Only after we asked did they ask if we were ok giving her formula until my milk came in- of course, giving her anything I could pump first.

During the first shift, she had a few episodes, during which we rang the incompetent nurse- but no one seemed to believe us! Unfortunately, at night, Shrimpy had an episode every hour- and I rang the nurses every time, even though doubt was still there- but eventually, the nurses saw an episode and decided to wake the weird doctor, and explained that it was seizures. At that point, the doctor finally decided to check for head trauma, which came back clear.

In the morning, (Shrimpy had been seizing all night on a regular basis), she had another seizure right when the doctor's had started their rounds- including the head doctors. Luckily, all 7 of them were able to see her have a seizure, and they ordered that she be given meds via IV to stop them. The meds made her even more lethargic, but gave her peace.

In the coming days, a multitude of tests were run to see what could be causing all of this. As a precaution, she received antibiotics since some of the lab work took a while to get back. Each and every test came back negative, and we tried to get as much skin-to-skin time as possible, learning to navigate all of the wires and her incubator like experts. With time, the medical team (who was excellent, with the exception of the team working when we were admitted) came to the conclusion (which could only be made by the process of elimination) that she was having benign infant seizures. My mom did research for me while we were there, and discovered that there are several women in our family that have had the same thing.

They switched Shrimpy to a less harsh drug, even though I still had to wake her to feed- mostly from the bottle, as she didn't have enough energy to feed from the breast. Luckily, my milk came in on Tuesday the 21st, and I had her exclusively on breast milk by Thursday. In that week, they even put us in a normal ward for an evening- but Shrimpy had mild seizures all night that night, and a few where she couldn't breathe. Her longest seizure yet, which happened after a nice bath and feeding from the breast, was one where she turned blue around the mouth, causing me to start screaming like a banshee (something along the lines of "get my baby some fucking oxygen!!!"). Broom took her from me (we always tried to hold or at least touch her during her seizures as a comfort measure) and screamed back at me to get me to calm down.

At that point, we were promptly re-admitted to the NICU, where they spent the next few days trying to get her meds right. Luckily, after being re-admitted to the NICU, she only had 2 more seizures where her breathing was an issue. Two meds, administered twice a day turned out to be the right combination for her. Her last seizure was the 26th, and within a week of them keeping her meds steady, she developed a regular wake/sleep pattern, although we still keep an eye on her.

After being home a week, the midwife and I worked on getting me off of the medical grade breast pump (I had too much milk) and purely using Shrimpy's cues- and it worked! In about a month, she has another EEG to see if her brain is still seizing. If not, then we will wean her off of her medication. A week after that, she has an echo cardiogram to see if the normal, newborn "heart hole" that hadn't closed for her yet (the midwife said that she has seen this with babies who have been under stress) is now closed.

Her two weeks in the NICU were some of the hardest of my life- and I don't think I have ever cried that much- ever. Watching her small body be in so much pain (after some of the seizures, she would whimper- talk about breaking your heart!) and not be able to do anything about it was extremely difficult. I would have gladly switched places with her ten times over- but we couldn't. She is such a strong girl! And Broom and I were thrown into the deep end of the parenting pool- and realized, that if we could do this, we were gonna be fine. Our relationship seems to have grown even deeper through that family trauma, and we were able to alternate who was the strong one, while keeping our spirits up when we could. We kept an eye on one another, and after I had spent 4 nights in the hospital with Shrimpy, Broom convinced me that we needed to alternate so that I didn't lose my shit. It was a good call.

Despite everything, I am grateful for the following: that, if our little girl has to have a sickness, that it is one that doesn't leave any damage (and if it does turn out to be epilepsy, that is manageable, too!), for a health care system that is excellent (all of her care is at no cost to us), for a relationship as strong as ours, and for family and friends the world over! We asked for positive thoughts and prayers and wow- were they given. I really, truly believe that they helped, and am so glad that we all got showered with that positivity. Our Shrimpy has quite the fan club- as she should, since she is incredibly adorable!

Once this is even more behind us, I will be even more at ease- but it is pretty neat how my brain has been able to regularly forget and not worry all the time- even though we both keep a close eye on her.

All in all, we are a very lucky family.