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Dear Turtle
It gives me a twinge of sadness to say that you are 10 months old. You will never be a single digit number of months old ever again in your life. For some reason this saddens me…perhaps because coupled with your increased independence, it reminds me that instead of a tiny baby, I now have an incredibly active almost-toddler. I realize I said something similar last month, but it’s almost impossible to convey how amazing it is to watch you grow and change month by month and I am constantly astounded by it.
As with last month, you turned 9 and then 10 months old away from home. We flew from San Francisco to Philadelphia on 8/3 and were in Scotland on 9/3 having an adventure on 9/3.
We took an extra day in Philadelphia on our way home because I had raved so much about the Please Touch Museum that your Daddy wanted to see it, too, so we took you again on 8/4. Your Daddy loved watching you explore and play in the 0-3 areas. We watched you as you crawled around after other babies (because surely whatever they were interested in was FAR more interesting than anything you could find on your own). You pulled to stand and cruised around the fairy tale land. You and Daddy went on the carousel while I took pictures. Then Daddy and I watched as you discovered a small piano with enthusiasm, banging on it for easily 5 minutes before losing interest.
Once home, we had a lot of things to catch up on. You had your 9 month well baby visit (26/27 inches tall-18th percentile, 15 lbs-1rst percentile), with a covering pediatrician as your Dr had a new little baby boy. But don’t worry, she’ll be back in time for your one year well baby visit. You also visited with your gastroenterologist and we discussed the process of introducing new foods to you. However, I’ll need to check with him if the plan is the still the same after you had what was obviously an allergic reaction to something you’d eaten in Scotland. You saw your hematologist, who talked about helmeting you for the next 6 months as you learn to walk. Which was fine, except the helmet is too big for you–a small problem with being so teeny. You also hate it and have taken it off multiple times at this point. I’m kind of ambivalent about the helmet–I do agree that there is increased statistical likelihood of your injuring yourself, but on the other hand if you’re not going to wear it and wearing it makes you miserable is it worth the increased protection? I don’t really have an answer. Your Early Intervention nurse and physical therapist worked with you while we were home, and continue to be happy with your progress. When we get home, your EI is going to be a bit different now that you’ve 85% or so got the purposefully letting go of objects skill down.
Also while we were home, you got to hang out with Auntie Kate one afternoon while I went into my volunteer job with Planned Parenthood. You spent two afternoons with your grandparents, and one day with your grandmother while I volunteered as well. During this month I also interviewed to work on the Planned Parenthood hotline. While I am helping by stuffing envelopes and filing paperwork, I want to do something a little more personal, and the hotline seemed like a great idea. It’s important to me that you see me doing things outside the home, and it’s also important that the things I do that take time away from you have meaning to me. It’s one thing to be pro-choice, which I am, and to want to pass that value onto you. It’s another to show you with my actions (which we all know speak louder than words) that I’m pro-choice. You’re far too young now to understand why I do what I do, but someday I hope to have made you proud with my efforts.
You hung out with Auntie Julie and Auntie Mary so that Daddy and I could have a date night. Which only reinforced that Daddy and I need to do this more often. I felt pretty smart though, because I managed to create our date night by asking our Facebook friends if anyone wanted you for an evening. Remember that our friends on Facebook are all real life friends whom we’d trust with you…and not just random people on the street.
Mommy had some really rough days during the time we were home–it’s hard to know how much to share with you in a letter like this, but I know from first hand experience that your parent’s depression affects your life profoundly. Statistically, you are also fairly likely to inherit our depression/mood disorders, so I don’t want to hide any of that from you either. Your Dad was diagnosed with bipolar type 2 disease, and I am trying to get evaluated, but it is suspected for many reasons that I also fall onto the milder side of the bipolar spectrum. Some of what I’m dealing with are poor coping skills. I wasn’t taught good coping skills as a child, and I never quite learned them as an adult. So I am going to go through some fairly painful (I’m sure) personal growth in the next bit of time, so that your Dad and I can teach you good coping skills and model them for you. I see a lot of my mother’s patterns in the way I act…some of that may also be inherited mental disorders, but some of it is just innappropriate behavior. I can only say I hope to do better in the future.
You had a playdate with Auntie A’s son. He wasn’t crawling yet, although Auntie A reports back that 48 hours after watching you crawl and bounce all over the place, he was crawling, too. BAD INFLUENCE!!! I was a bit worried when you kept crawling over to him and stealing his toys. Was I raising a baby bully? It was, however, evidence that points to the need to procreate again (although certainly not soon) as it’s not like your Daddy or I know how to share (as we are both only children). You, my dear, need a sibling. It was during this visit that Auntie A pointed out that you had 2 more teeth…the top teeth on either side of the top middle two had come through. It’s hard for us to know (until you chew on us, which we try to avoid these days) when you have new teeth as you hide them with your lips when you open your mouth and are NOT OKAY with us trying to open your mouth to get a good look on our own.
We left Boston on August 24th and arrived in Scotland on the 25th (local time). I was cursing the decision to keep you in lap for this trip (significantly cheaper than buying you your own ticket) after the first leg of the trip (Boston to DC). You spent the entire time climbing down off Daddy’s lap and standing up on the floor and then crawling to me on the floor (over the feet of a nice australian woman on her way to South Africa, who was incredibly kind to you) and then back. You also tugged on the Aussie’s pants legs and used her to stand up many a time. Luckily, she was enchanted by you.
Unlike our previous trips, where you either slept happily or just hung out in the MOBY (both ways to Colorado) or had your own seat (by luck to San Francisco) or were pretty okay with being held (from San Francisco, although you eventually got your own seat thanks to the seating shuffle and the fact that you puked on someone, who then wanted to be very very far away from you), you were NOT OKAY with being held. I was dreading the long trip to the UK as you had forcibly not slept on the trip to DC or in the airport in DC–staying awake without a nap for over 6 hours–and were cranky. Luckily, although you are technically too old for it, you still weigh few enough pounds that the cabin crew got the baby bassinet for you. Once you gave in, you slept most of the flight to London. You then slept a bit of the way from London to Scotland in Daddy’s arms. I am praying we can get the bassinet again on the way home.
Your Dad, you and I had a few days of adventuring together before he had to start attending conference events. We went to the Edinburgh Zoo and saw the Penguin Parade (and the only Koalas in the UK!), toured Edinburgh Castle and saw the Scottish Crown Jewels, and then spent a day in Glasgow. Daddy carried you (in your stroller) up a flight of stairs so that we could all have tea in a MacIntosh Tea Room! But the most exciting part of Glasgow for you was when we bought you a balloon twisted into the shape of a flower. That was also the day where you learned about the inevitable consequence of chewing on a balloon.
Your Daddy has been attending a conference for the last week, and you and I have been on our own. We have walked the Royal Mile, explored Holyrood Palace, driven all the way up to Loch Ness, done a bus tour of Edinburgh, been to a “soft-play” center at a shopping mall, and plenty more.
The most memorable stories I want to share with you about this trip are
–That I broke your stroller going up the very tight spiral staircase to Queen Mary’s chamber in Holyrood Palace. There is a small washer or screw somewhere in the palace that once belonged to your stroller. The arms that control whether you’re sitting or laying (the back of the seat) in the stroller are what broke, and I currently have McGuyvered your stroller so that it will still be usable until we reach London and the replacement seat arrives at our hotel there (thank god for the Bugaboo warranty and their excellent customer service). Basically I’m wrapping the rain cover behind the seat and securing it on the handle of the stroller so that you can sit up. It works, but it’s not terribly effective in a rainy climate where I often have to unMcGuyver your stroller to use the rain cover for it’s intended usage.
-Your favorite part of Glasgow was the flower balloon. Your favorite part of Edinburgh was the doggie balloon I got you…until I took you to a soft play center.
-That I have you to thank for such an amazing trip.
There are things about being in Europe with an infant and a stroller that have made me wish you were old enough to leave with your grandparents. Many places here have strict rules about who can eat where at what time of day that were never issues for me as I’d only ever been to Europe as an adult. Beyond that, the sheer difficult of getting a stroller around a city that was not built in an age of accessibility is a struggle. I forwent a few attractions and more than a few restaurants simply because it was just too much of a challenge to get you, the stroller, the diaper bag, and the camera bag/my stuff up or down a flight of stairs.
But these restrictions on small children forced me to be creative in a way I never would have been were I here without you. Without you, I would have been a good little tourist and paid for my highland tour and sat on the bus and read on the way up to Loch Ness and back, only glancing out the window occasionally or when instructed to by the tour guide. Because I couldn’t take you, and the combined cost of a ticket for the tour plus a sitter for the day was incredibly high, I instead decided to rent a car and do it with you on our own. I NEVER would have rented a car in a foreign country, where the cars are driven on the opposite side of the road otherwise. Because I did, I learned that I could do something I never would have tried without the combination of rules and my own stubborness and desire to see Loch Ness. I have you to thank for that. As I did rent a car, I had to pay attention as we drove to Loch Ness and back. I saw sights I never would have seen otherwise. I stopped whenever I wanted to, to get gorgeous shots of the Highlands that I never would have had the chance to on a bus. I saw roads, we made side trips (such as stopping at Culloden), and all in all, even without a Nessie Sighting, I think our trip was FAR more successful than my experience on a tour would have been without you.
I have you to thank for all of the wonderful Scottish people I’ve met here. I would have talked to a few cab drivers, and maybe a person in a store here or there, but your presence draws in strangers like moths to a flame. Obviously without you, I never would have had a reason to go to a soft-play area. Because I wanted to treat you with a day where you could be out of the stroller and social after the long drive up to and back from Loch Ness, I decided on a soft play area. While you crawled and played, and copied older babies (throwing ball pit balls!!–not AT anyone, but doing the purposeful release is exciting!) I sat nearby with other moms and we chatted and connected over our kids. At the laundromat today, I talked to strangers because of you when on my own I would have just opened up my laptop, put in my headphones and zoned out while the laundry washed and dried. To say nothing of strangers on the street. So many people have been very kind; holding doors, helping us on and off busses, and a thousand other small kindnesses. It really does reinforce my belief that most people are good. I’m grateful to you for that–for helping me be more present in the day to day aspects of this trip.
Of course, your screaming in the carseat while I was on the phone with Alamo, trying to get my flat tire fixed, was not an enchanting experience. But it’s part of parenting, and I understand that you were just incredibly frustrated with being in the seat and that you were incredibly bored. Unfortunately, it wasn’t something I could do anything about. Regardless of the truth (which is unknown), I’m still choosing to believe that the valet drivers were the ones who ran over the screw, causing the flat tire and that I didn’t drive all the way back from Loch Ness (or to and back from Loch Ness) in the rain on a flat tire…because that’s just too freaking scary to think about.
I realize that this isn’t a trip you’ll remember. That in fact you may one day think we were insane to take you (perhaps the first time you take a baby on a plane or see a screaming baby on a plane). But it’s part of the world I want to give you. Travel opens your mind because it teaches you (to paraphrase Barack Obama) that people in other countries are PEOPLE. As someone who first flew when she was 20, and who grew up in a small town, I could have easily misunderstood my fellow humans, finding our differences too large to overcome. But as I travel the US and the world, I learn first hand that people are people. I see things and learn things that expand my understanding of my fellow man and that bring me closer to him (and her). I dreamt of Britain as a small girl, especially after reading books like “A Little Princess” and “The Secret Garden.” I watched “Mary Poppins” and “My Fair Lady” and wondered what it could be like to live somewhere like that. Obviously modern Britain is a far cry from those books and movies, but seeing a castle that is over 500 years old, breathing it’s air, touching it’s stone walls, walking in the gardens that Kings and Queens have walked in isn’t a feeling you can get from a book or a tv show or a movie. While these are experiences that will be lost to the mists of your memory, I want you to grow up having similar experiences. Knowing that the world isn’t as big as it seems. Walking where so many others (both Kings and beggars) have walked.
I hope some day that you’ll treasure the silly shots I’ve taken of you…10 month old Elanor with a “hairy coo.” Elanor at Edinburgh Castle.
Each day is a chance to experience the world anew with you, because it’s all new to you. And while you’re not overly impressed by a castle, I am in awe of standing in a castle with you.
I love you
Mommy
Things are slowly improving.
We are in our new apartment. Having our own space and sleeping in our bed helps. Creating a safe home for Elanor helps.
But in the end, I’m still struggling—-I just don’t have confidence in myself as mother.
I’m not looking for platitudes or reassurance. I’m just sharing where I am and why. The truth is that my husband is constantly telling me he thinks I’m a good mom. But all I need to hear is a critique (or something I perceive as a critique) from anyone, and that’s what stays with me. For example, we had the Early Intervention nutritionist in to see Elanor yesterday–she was critical about Elanor having started solids (at the advice of our GI), and was very anti high chair for Elanor and when she left I just collapsed into a sobbing ball of self-doubt and hatred.
I was actually convinced for about an hour that my husband and child would be better off without me. That I should leave. That I don’t deserve to be Elanor’s mom.
Because I had ordered a high chair and EI said that was wrong.
It sounds stupid when I look at that typed sentence. How could I have had a break down over that?
But it’s not that one specific thing…it’s feeling overwhelmed, it’s that my daughter having food issues is a highly emotional trigger for me because I have food issues, it’s my poor habits surround my anti depressants, it’s self doubt and lack of confidence.
I’m the kind of person who thrived on getting good grades as I was growing up. The problem with that is there is inevitably a point in time when you stop getting grades. I, however, interpret peoples comments as defacto grading. And the personality that drove me to question why I had just gotten an A instead of an A+ isn’t adjusting well to the plethora of conflicting advice I’ve recieved.
The bottom line is that there is no one true way to raise a child. You have to make decisions as the parent about what’s best for YOUR baby. In my case, I don’t trust those decision making skills.
I’m talking to my therapist about this but in the meantime I just have to focus on getting through the day…and not giving in to the little voice that urges me to leave. I know it will be okay…some day.
Right now I’m struggling…
I think it’s a lot of things compounding in on one another without the chance to really digest any of it, resulting in something not unlike post traumatic stress disorder….
1-Our visit to the PICU to see the doctor who saved Elanor’s life. On one hand it was amazing and I was so happy and proud to share how far my little girl has come since the day they first met her…in organ failure near death. But on the other….I’ve been flashing back to those days a lot. Elanor’s room was the second from the entrance to the PICU and it was impossible for me not to see it, not to remember when that room was my whole universe. Not to remember what it was like to sit by my daughter’s side, reading aloud from a dr. seuss book or some other kid’s book wondering if she’d ever get taken off the ventilator, wondering when or if a doctor would promise me that we could start thinking about Christmas, about her first birthday. I remember vividly finding out about her stroke, crying near hysteria with fear that it would ruin her life-kill her potential. Looking at her and seeing a stranger instead of my turtle. I remember that far more vividly than I do the relief in my heart the first time she cried out weakly after they removed the ventilator, or the joy when she made her “turtle face” at us and we saw our daughter and not a stranger in her face.
2-A friend’s husband recently was in the ICU. She reads this blog and I want her to know that I wouldn’t have wanted not to know, and that I think of her constantly even though I haven’t been able to bring myself to write on his carepage or to email her. But hearing about a loved one in the ICU, knowing in my soul how awful it is, what life in the ICU (even if my experiences were in the PICU and hers are in the adult ICU) is like just makes my heart ache.
3-A letter I received a day before the story broke on the news.
“Over the past six months, 18 mothers and 19 newborns have become sick with a dangerous bacterial infection soon after being released from Beth Israel Deaconess Medical Center, triggering a state investigation that uncovered serious problems with the hospital’s infection control practices.”
I don’t know if what happened with Elanor is part of this. I don’t know what to say. I don’t know if this is finally something I can point a finger at and say “THIS…THIS is why my daughter almost died, you fucking assholes”
All the peace I had found with the idea that I would never know why my daughter became so ill, all the progress I’d made coming to terms with what had happened, all of my ability to look at things from the “but she’s so much better now” perspective…are gone.
4-The move. Upheaval, change, the absence of my “safe” spaces that I go to when overwhelmed are not there. And we’ve been moving stuff every night, so my back has been hurting like hell.
5-Staying with my in-laws. See #4 for why. Add in the fact that I feel like a visitor in their home and mix well with the fact that we are raising Elanor very differently from the way that they raised Ravi, add in a number of comments from my MIL which could very well just be commentary but which I am taking as criticism (“When are you bathing her?” “After the move; babies only need a bath once a week or so” “I bathed Ravi every day”) and stir.
6-Ravi and I have been sleeping apart since Monday night. His bed at his parents is a double, and the baby refuses to sleep in the pack n play so she needs to be in bed with us–all 3 won’t fit in full, so I’ve been in the guest room with Elanor. Oh, and the bed is hard as a rock, so with the back pain from moving crap I’ve been sleeping even more poorly than I would have with just R’s absence. When Ravi and I lose out on couple time, our communication begins to deteriorate, which in turns makes me feel like I’ve lost my support network (even though of course, he’s not my only source of support, although when I’m depressed I tend to forget about the rest of it).
7-I haven’t been great about taking my Zoloft. With the change in schedule and the loss of routine, I haven’t remembered my Zoloft every day. Which, of course, impacts my mental health and my ability to cope.
So, all of that in a two week period or so….with the last 4 in the last week….and I’ve regressed. I’ve lost all the progress I’ve made in coping with Elanor’s illness/recovery/whatever.
I’ve actually regressed back to the point where I’m terrified of being apart from her. Because I am *convinced* that something bad is going to happen. That I’ll wake up and she’ll have died of SIDS during the night….I’m waking up 10-15 times a night and the first few seconds are always a panic until I touch her and feel the rise and fall of her chest. That she’ll become dehydrated and we’ll have to take her to the ER and she won’t come out this time. That she will die.
I’m not okay.
I confessed all of this to Ravi tonight. At a hotel…in the room he’d offered to get us when I made a point of saying that I was thinking of sleeping at our old apartment, even though there are no pillows or sheets. Just to get away. Just to be in a safe space. The hotel room we’re staying in until Sunday. Where we have a King bed…where all three of us can sleep together.
I know things will get better.
After Monday, we’ll be in our own space again. We’ll be back in our bed, with Elanor’s crib against my side of the bed. It will be forever until we’re unpacked and babyproofed and all of that, but it will be our space. That we can just be ourselves in.
After Monday’s big move, I’m going to get in touch with the Infectious Diseases people who treated Elanor at MGH and ask if this could possibly be part of the BI outbreak. And if so, what do I do?
Next Wednesday I see my therapist and I’ll talk to her about all of this. I certainly thought about calling her today, but trying to squeeze in a visit would only make me more stressed, so I decided against it.
In the meantime…I’m struggling.
My darling Elanor
You are five months old today. 151 days on this earth.
Yesterday brought back those early days when no one was sure if you would make it this far. We were at the hospital to check in with the gastroenterology doctor when it occured to me that the PICU staff might want to see you…to see how well you’re doing; how big you are, how alert, how happy. So we went up to the PICU to say hi. We saw the doctor who was there the day you were admitted. We saw several of your nurses. The nurses were practically in tears to see you, and I was practically in tears seeing them. We got a picture of you with the doctor for your baby book…so when you’re truly ready to hear the story of those early days, I can point to him and say “this man was instrumental in saving your life.”
As someone who has suffered from depression throughout my life, even on several occasions being so depressed that I thought about taking my own life…I feel a slightly irrational desire to instill in you that you should NEVER attempt to cut your life short. You fought so hard as an infant, and so many people fought to help keep you alive. I feel, on some level…fair or not…that you owe them, and more importantly yourself. I want you to try to live a full life, to achieve all that you are capable of. Any less would be a slap in the face to the one week old who fought to keep her life going.
You are a remarkably happy baby. With the exceptions of hunger and tiredness, you rarely are missing a big grin. I love especially the smile you reserve for me. The one that shows your love and trust.
In the past month you have discovered your feet and have found them to be tasty tasty treats. I am endlessly amused by this, and enable you by constantly removing your socks when you’re indoors so that you notice them. For some odd reason, you only seem fascinated by them when they aren’t covered by socks or shoes. I’m not sure why, but since there are few things cuter than baby feet, I am content to just go with the flow and keep you barefoot in the house.
You are growing by leaps and bounds. As of this week you are 24 inches and 12 lbs 3 oz. The 24 inches in particular seems remarkable to me. I don’t know why two feet seems so much more significant than 1 foot 11 inches, but it does.
You are also a remarkably adorable baby. I will admit to doing everything I can to enhance this—I have bought a painful amount of baby clothes you will quickly outgrow simply so I can put you in matching little outfits. A pair of pink jeans with a pink hat specifically to go with a pink and white striped sweater. I try never to leave the house with you in a sleeper…I like you clothed and adorable. I can’t help it…the praise you get when I take you out dressed adorably coupled with your own bright personality is addictive. You shine when people talk to you.
Early intervention continues to be underwhelmed by you, and I in turn remain grateful for this particular status quo.
Unfortunately, Elanor, you have been diagnosed with food allergies and I, in turn, have 40 oz of breast milk I need to find a home for. I have a potential recipient lined up, and I hope that it works out. Your GI doctor says you won’t be able to have the breast milk, so I want to find a good home for it. After all, it was created out of love for you. And it deserves better than the drain or garbage pail. Since the diagnosis of milk, soy, eggs, and nuts I have stopped pumping. Your daddy and I both cried as you drank the last bottle of breast milk. I miss how breastmilk was good for so much longer than formula…I miss that it smelled better…I miss how happy you were to drink it, although you have adjusted very well to the formula.
In a week and a half we move to our new home. I can’t wait to see you there, and to create your nursery. The one in our current appartment has turned into a storage room, and I am hoping for better in the new place.
with love always
Mommy
I feel like all I’ve done over the past two weeks is sit in doctor’s waiting rooms.
Elanor has had Five doctor visits and one visit from the home nurse. I’ve had three therapy appointments, an appointment with the post-partum psychiatrist, and two allergy shots. From Jan 5 through today, we have not had a weekday where we haven’t seen a medical person of some sort.
Which is exhausting.
These were all necessary visits, but it’s been a lot of information in a short period of time, and digesting it has required a lot of energy (and time off from work for my husband). Luckily it has been largely positive, so I can’t really complain.
First of all, the best news we have received in this new year–Elanor has NOT suffered any hearing loss. Apparently it is very common for babies who have spent significant amounts of time in the NICU or the PICU to be nonresponsive to sound. Which, when you think about it makes a ton of sense. Normal babies don’t have people coming in and out of their rooms at all hours talking to their trailing med students and residents. Healthy babies don’t spend three weeks hooked up to a monitor that is constantly monitoring heart rate, blood pressure, oxygen saturation, and pulse rate–the constant beeping and multiple times a day alarms. Healthy babies don’t have the alarm going off when their medication/IV is five minutes away from being done and again when it’s done. In short, healthy children aren’t innundated with sound the way that Elanor was in the first month of her life. OF COURSE finger snapping, hand clapping and even a smoke detector going off (my husband forgot to turn on the over stove vent fan) aren’t interesting to her…she heard much louder on a regular basis. It’s just not impressive to her.
If you’re interested, yes, I still plan on doing baby sign with her. I’m doing just “milk” right now, and we’re probably going to do two or three others. However, at two months, it’s more for us to get us used to doing the sign than any developmental readiness on her part-and yes I do know that.
The second best news was from this past Monday’s two month well baby visit. Having dropped Elanor from 24 calories per ounce to 22 calories per ounce, she had gained 11 ounces in two weeks. This was enough for our pediatrician to give us the green light to stop supplementing altogether. The Lactation Consultant is coming Saturday because at this point Elanor seems to have forgotten how to latch altogether and just freaks out when I try to put her on the breast. I have faith that she can learn how to, but I have no illusions (and much fear) that this road is going to be long and difficult…and that it will require much patience. She took her shots well, and had a small fever, but nothing that cuddles and some doctor approved baby tylenol didn’t cure.
The remaining three doctor’s appointments and the home nurse visit were, of course, related back to her infection, the septic shock, and the stroke.
The home nurse initially came three times a week, then twice and will now be coming once a week to take E’s blood pressure, as E is on a blood pressure medication and needs monitoring to make sure that the dosage is staying current to her needs.
We saw Pediatric Neurology last Friday and they were VERY pleased with E’s progress. Her preference for her right side is balancing out (it is abnormal to have a side preference at her age), she is less stiff than she was when hospitalized, and she is doing all the things that healthy babies do at two months like lifting her head and cooing.
We saw Pediatric Nephrology (the kidney doctor) on Tuesday and had a slight adjustment in her medication done, as well as discussing the plan to wean her from the blood pressure meds. The reason that the Kidney doctor is in charge of blood pressure medication, as opposed to cardiology, is that apparently in infants hypertension is almost always caused by a kidney malfunction and not a cardiac one. We have had her heart ultrasounded as recently as last month and it is totally normal. Thus far her kidney’s have been normal as well, and it is assumed that the hypertension is residual from the hit they took when she was in shock, and that as her body grows and finishes healing that the hypertension will dissapear.
Today we met with the Pediatric Stroke Team, which consisted of a hematologist, another neurologist (examining E’s case from a stroke perspective as opposed to the regular neurologist we see who is making sure that she is developing normally) and a developmental Psychiatrist. They are confident that they understand why she had a stroke and that she is not in any danger at this point of the bleed repeating. The short version that I understand and took away is that when she started getting sick, her body used up all of its clotting factors (which they could see in the blood draws done while she was in the ER or the PICU that first day) and it took three to four days for her numbers to normalize, which is why the bleed happened on day two in the hospital. There really isn’t anything that could have prevented it as E was getting platelets and red blood cell infusions multiple times per day in those early days. The most important thing is that the window for it re-appearing is over, and the imaging that was done only showed improvement and not further bleeding. They noticed that she had been very anemic and did a heel stick to check and see if she still is (and if so, hematology will want us to give her iron supplements in the short term). They want some additional blood drawn, but we requested that it wait until E has blood drawn for the Gastroenterologist in a few weeks as she is a hard stick and has had more than enough needles in her life already. We will meet once more to review test results, and they think that we won’t need further follow up from them other than a Developmental Psych eval before she starts pre-school (which is basically the kind of evaluation done to check for any kind of learning disability, developmental delay or special need that isn’t physical) when she’s in the neighborhood of 2-3 years of age.
While I am an atheist, I grew up Catholic enough to want to say that Elanor must have one hell of a guardian angel…or at the very least should never gamble as she seems to have used up all of her luck for her lifetime.
It’s far to early to say anything definitive, but Elanor may have left this experience with little or (fingers crossed) no long term effects (other than some white hairs on me beneath the hair dye).
As for me, the PPD is manageable at this point and the good days have outnumbered the bad since my last post.
I haven’t posted here recently. Post partum depression reared it’s ugly head and the experience was bad enough that I couldn’t bring myself to write about it. I couldn’t bring myself to write about anything else that was going on because while in the midst of depression, nothing else IS going on.
Oddly enough, I broke the day after an evening alone in a hotel room with my husband without the baby. My mother and aunt had given us some “12 hour date” coupons for Christmas and had offered to make this one a 24 hour date. So we checked into a downtown hotel, ordered room service, hung out in the hotel’s jacuzzi and pool, watched a movie…and fell asleep without having sex. We woke up, ordered room service…and fell asleep. So our sexy little get away had very little sex. It’s sad because we can manage to have sex when she’s right there, but given the perfect opportunity, we failed miserably.
Anyway, we came home fairly refreshed. But over the course of the day and into the night Elanor’s cries were more piercing, more irritating and my response was to grow more apathetic. I began crying. I couldn’t stop crying. Inexplicable misery soaked into my skin and no amount of hiding in the shower and no amount of scrubbing my skin raw with soap and a washcloth could clean it away.
I ended up calling for help. I called my therapist and went twice last week. I called my psychiatrist (my therapist can’t prescribe) and set up an appointment and was given the green light to increase my dosage of Zoloft. I called my aunt who came and stayed for a week. I asked my husband for help and he gave it. I shared my misery with my friend who has a son the same age as Elanor and she let me know in every way that she was there for me.
I was not, contrary to the opinions of the voices in my head, alone.
I am lucky, I suppose, that my depression doesn’t overwhelm me to the point where I am unable to see that I need it. I am also lucky in that I get moments of light breaking through the darkness, moments of happiness in my despair, and those moments give me hope that things can and will get better.
One of those moments of happiness was the first meeting of my New Mom group. While Elanor’s medical stuff is radically different from what the other mothers are going through, there are things that I am experiencing that they are as well, and I walked away feeling less alone. I think the class will be worth the money for that alone, even without learning other tricks like the “super swaddle.”
Elanor herself is capable of shooting sun’s rays through the depression. Her smile, her joy in discovering that she can bat at things, and the way she snuggles against me are powerful. Even in my worst moments, it’s hard not to smile back at that unrestrained glee in Elanor’s smile.
The last few days have been better.
Today was proof that things are getting better, at least for the moment. Elanor had her two month shots today, and has been cranky. She will NOT let me put her down. Instead of it becoming overwhelming, I held her until I remembered that I had sling options, and then I’ve had her in the MOBY for several hours.
I don’t expect that the day will be without clouds, but at least it feels like dawn has broken and my darkest night is over.
I realize (when I’m not ridiculously sleep deprived) that guilt is a pointless emotion, especially when you’re not doing anything “wrong.”
The problem is that a new mom’s sense of what’s “right” and “wrong” is fairly screwed up to begin with, and only gets more strict and unfair towards herself the more sleep deprived she is. Multiply it by about 10 billion if that sleep she’s getting is at a hospital by the side of her sick two week old.
Last night I didn’t sleep at the hospital. I slept at the hotel where my husband had rented us a room because (a) the parent rooms by the ICU aren’t an option once she’s is moved to the regular floor (which could have been today and will most likely be tomorrow) and only one of us will fit in the pedi room with her bed wise, (b) the cots at the hospital are killing both our backs (especially considering I have a bad back to begin with) and (c) the lack of privacy/hot water/water pressure/hospital atmosphere was killing our souls a little more each day.
I did not want to go.
No, that’s not true. Deep down I wanted to go to the hotel SO BADLY. Long hot shower. Soft bed. Soft bed where I could lay next to my husband and actually be HELD. Sleep. Oh my god…SLEEEEEEEP. Craved the sleep. NEEDED sleep. I had nothing…no energy and no reserves.
The nurses all told me I should go. That it would be good to go. Because seriously? Are there better baby sitters out there than the monitors checking her heart and respitory rate AND the trained nurse with over 20 years experience? Could I ever find such a sitter on the outside, and even if I could, could we ever afford a sitter with those qualifications.
But the Mommy Guilt. Oh my hell (to borrow a quote from Amalah) the Mommy Guilt.
I started crying when it was time to leave. Because she was awake and she needed me (she didn’t..she was getting ready to sleep). Because if I sat in the room it made me a better mom. Because leaving her made me a bad mother, no matter how much *I* needed to rest for a few hours.
I wondered if the nurses were just saying that I should, like some twisted test I used to give boys to see if they liked me enough. Did I just EPIC FAIL at the secret motherhood test? They just wrote me off as a BAD MOTHER didn’t they?
I called myself a bad mother as I tearily walked to the car. I called myself a bad mother as we drove the 3/4ths of a mile to the hotel. I beat on myself as I stood in a blisteringly hot shower for the first time in 11 days (not that I didn’t shower at the hospital…but that it was a thin barely warm trickle of water) and let some tension release from my back. I felt terrible as I pumped and stored milk in the fridge as I ate. And then we climbed into bed and I had to watch video of Elanor three times before I could consider sleeping…and called the PICU just to check on her as well.
She was fine.
I still feel guilty.
Because I needed the sleep.
Even after seeing my OB today for my post partum depression check in, and being ordered by her to sleep at the hotel at LEAST every other night if I wouldn’t consider every night…and then she made a point of saying my milk supply would suffer if I didn’t. Which my husband is using viciously against me.
We’re now at least going to get on a schedule where we can trade off. It isn’t so much that *I* am not there as neither of us was…but Ravi was just as far gone as I was. But after a night of sleep I went back at 8 (although there was a nightmare with trying to get a freaking cab) and he slept and came in at 1pm so I could leave for a dr’s appointment, after which I came back and slept. He’s still there and I’m here…I’m going to take one more nap and then go back to the hospital for the night shift so Ravi can come back and sleep and take the day shift.
I am distant enough from my sleep deprived mommy persona that I realize I was being a bit melodramatic.
But there’s still part of me that feels guilty for not being strong enough to keep going.
Mommy guilt in the PICU…I know it doesn’t just live in Elanor’s room…I see it in the faces of the other moms especially. We wonder why we didn’t see the illness that silently felled our precious child. We worry about the care our kids are getting–did we ask enough questions? is it really the right course? We worry about how they’re eating, sleeping, surviving in a different atmosphere than home. We live and die with each beep of the monitor.
And we so rarely look up to acknowledge each other.
There was one mom I connected with, but her baby left the PICU and so did she. (which is a GOOD THING…I KNOW)
And now I’m back to recognizing the other moms, and silently nodding at them.
I want to reach out…to share our pain on the bad days and our triumphs of the good days. But the problem is that you never know who’s ready to be reached out to and who isn’t. If anyone had tried to reach out to me in the those first few hellish days I would have reacted badly…I didn’t want to talk to anyone besides my husband and our medical team. I didn’t want to hear about anyone else’s kid…who cared about some other kid…MY KID was sick. And that is totally understandable and reasonable. Until you know your kid is going to live and be okay, you don’t really want to hear about someone else’s kid and if they’re going to live or die because you just don’t have the emotional capacity to listen or to care about anyone else (even yourself…I got so mad when I realized I needed a fresh pad…how dare my 10 day at the time post partum body let me down by BLEEDING…didn’t it know ELANOR WAS SICK???!!!!).
Mommy guilt in the PICU…the most present emotion of all…after the fear, the worry, the exhaustion, and the baited breaths we’re too scared to let out.
Dear Embykins,
In 48 hours you will be in my arms (unless L&D has a flood of patients and we get pushed off the schedule).
I am decidedly overwhelmed by this fact. Excited, certainly, but also fearful and overwhelmed.
This has been an odd week. I have been scatterbrained, disorganized on a level I have never really experienced, and completely withdrawn. They say that women about to give birth do pull in on themselves and find their quiet places. I don’t know that I’ve found my quiet places, but I will say I’ve been distracted and very NOT focused on anything except things relating to you.
This week has been fairly quiet. Tuesday’s ATU appointment went smoothly, although my blood pressure was still a little on the high side (although not quite to pre-e levels).
On Wednesday, I met with the psychiatrist again. We decided on my anti-depressant (really, anti-anxiety) regimen post-partum. I’ll be trying Zoloft at a very low dose for a few weeks and then increase it to the next lowest dose for however long I need it. I’m hoping to be able to wean off it by six months at the latest. I know that week 2 through month 4 are the most dangerous, and it gives me comfort to know that along with the talk therapy (that you’ll be coming with me to for the short run) there will be measures in place to keep us both safe. I feel like with the little bit of medicated support, I’ll be able to deal with the fear and anxiety I feel about becoming a mom, about the lack of control I have in my new role, and my uncertainty at this major life change.
Your crib and bureau arrived yesterday. Your Dadi and Dada came right over and put the crib together, and then Daddy came home from work and helped with the bureau while I was at therapy. I had given them directions on how I thought I wanted things, but when I got home (your grandparents were gone, your Daddy had gone back to work to wrap up some things) I didn’t like how it looked and in a fit of pregnant hormonal insanity moved all the furniture around by myself. I’m sure Daddy would have yelled at me if he thought it would have done any good.
The nursery is almost complete, with the exception of Mommy’s new glider/recliner which should arrive in the next few weeks. Once it is in there, we have a bit of decorating to do and then it will be ready for you, not that you’ll be sleeping in there for some time. But it is a beautiful space, and one I’m so proud that we could provide for you.
As of today (Friday) my blood pressure has gone back down to well within normal range, which makes your Daddy and I very relieved. And while my body hasn’t done terribly much in the way of progressing towards labor, we were able to sweep my membranes today to try and get something going before tomorrow night’s dose of prostaglandin.
I wish I had something profound to say about all of this. I really don’t–all I can say is that despite the fear, the anxiety, the nerves is…I can’t wait to meet you. I want to hold you. I want to get on with this breastfeeding thing instead of reading about it. I want to count your toes, to hear what your cries sound like, to see your Daddy hold you, to share our life with you and make a new life as a family with a child.
Love,
Mommy
I posted last week about my fears surrounding PPD.
I’m happy to say I did something about.
The wheels were put into motion when I talked to my therapist. More acurately I broke down in tears in her office and confessed how scared I was. How I kept having these recurring awful thoughts about doing something horrible to my baby, and then turning that fear and horror on myself. That I have a plan to commit suicide rather than hurt my baby or to punish myself if I did.
I’m in tears just typing that.
I hate this. I hate that there’s something wrong with my body’s chemical makeup that I could ever think of hurting my child, or myself.
More to the point, I hate that I know I’m capable of hurting myself. I tried to commit suicide the first time when I was 12.
Twelve seems so young. But the right (wrong) confluence of events brought the world crashing down around me, and I broke. I had been getting my period on and off for a year, but it had just started getting regular, so for the first time I was having regular hormonal surges, which is often something that sets off depression in girls (especially consdering it runs in my family, putting me at higher than average risk). My grandmother, who was basically my mom, had died over the summer. The day before she went into the hospital, we’d gone shopping, and she’d kept mentioning that she was tired, and I kept begging for one more store, pushing her to keep going. Then she went into the hospital and never came out. The one time I saw her, it was after her operation (she’d had a brain tumor) and her physical appearance had terrified me to the point of shaking and breaking into tears and running out of the room. Then my grandfather moved to Maine. Then we moved to Maine two weeks into the school year.
It was all too much. I couldn’t handle things. I blamed myself for my grandmother’s death because I didn’t understand about brain tumors–I just knew that I had kept begging for more stores, then she went into the hospital, and then she’d never come out. I hated myself for not being strong enough to visit with her. It was incredibly hard to know we’d gotten the call that she’d died the night before I was going to get a second chance to see her.
The first time, it was pills. All that happened was I got sick, and I lied and said I had the flu.
The second time, it was Flintstone vitamins. Looking back I don’t know whether to laugh or cry that I decided to OD on Flinstone vitamins. I spent the night puking back a rainbow of fractured Barneys and Dinos and Wilmas and other miscellaneous characters.
The third time, I had a knife secreted away in my room. I kept taking it to my skin and flinching when it touched my skin, pulling my arm back quickly. I hated myself for not going through with it.
It was the fourth time that I got caught. I was in so much pain that I just wanted to feel physical pain. So at some point in the night I got up and went to the kitchen. I didn’t take the knife back to my room…I just wanted to make it stop hurting on the inside. I had the knife in one hand and was bracing my other arm on the counter when my mom walked in and caught me.
That was when I entered therapy.
I never actually tried to kill myself again.
That doesn’t mean I haven’t thought about it. I don’t know if there’s been a point in my life since then that at the back of my head I haven’t had a plan. I don’t think about it every day, but when I’m depressed there’s ALWAYS a plan.
So I confessed. I asked for help. I admitted I need it. Even though she isn’t here yet.
My therapist went into action. She had me sign a consent form so she could talk to my OB. She ordered me to talk to my OB. She suggested that I ask for an evaluation as soon as possible after the baby is born so I can get whatever chemical help I might need. We’re upping the frequency with which I see her to once a week again, and we can do more if I want it. My husband will come to a meeting to learn more about PPD and how to help identify it and support me, as well as what to do should the need arise. I was told “we won’t let you do any of the things you’re scared of.”
Forty-eight hours after that confession I had to talk to my OB. When she came into the room she sat down and said “I’m really worried about you. Your therapist called me but we haven’t been able to touch base yet. Tell me what’s going on.” I had to go through it again, and again I was offered help and reassurance. It turns out my OB has a lot of experience with PPD, and had would’ve checked up on me about 1-2 weeks after delivery anyways. But with my history, she had the name and contact info of a psychiatrist for me to talk to before the end of our appointment. She shared that she had other patients who went back on anti-depressants the day after delivering, and that they and their babies were just fine. She also assured me that “we won’t let you do any of the things you’re scared of.”
I have a name and phone number of a psychiatrist. I’ll be calling her tomorrow to set up an appointment.
I have researched the safety of various anti-depressants, including their safety when breastfeeding, and I am comfortable with the idea of doing both after reading through Hale’s forum on anti-depressants. (Hale is the leading authority on medicine safety during nursing–his book is THE reference guide). However, I have also reached a point of peace with the idea of bottle feeding if it’s necessary due to drug interactions.
I like having a plan. I hate thinking about the worst, but the way to keep it from happening is to plan for it, and I will be more calm knowing what the courses of action are.
Because I am NOT going to hurt my baby.
Because I am NOT going to hurt myself.
If you, like me, are pregnant and have reason to fear you’re going to have PPD…be proactive, I beg you. The support is there…you just need to be brave enough to ask for it.
As someone who has struggled with depression all of her life, who has been on anti-depressants at least 3 of the past 10 years, post partum depression is a very real sword of damocles hanging over my head. Women who have a history of depression are 27 times more likely to suffer PPD, even post partum psychosis.
I am in therapy. I went back more than six months ago because I was having so much trouble dealing with being pregnant again after losing Hope. We had cut back to once every other week, and it had actually been 3 weeks since I last spoke to my therapist for various reasons.
That isn’t the game plan heading into the home stretch. We’re ramping back up to once a week, and she’s helping me arrange for a post-partum evaluation. There are anti-depressants that are safe for breastfeeding moms, and while I would view it as a failure, if I need ones that aren’t badly enough I will switch to formula if it will keep my baby safe. We’re talking about post-partum support to keep me on level enough ground, and the husband will be coming to a session with me in two weeks to talk specifically about what he needs to keep an eye out for and how to help me, and how to deal with a crisis, should it occur.
I hate thinking about these possibilities. I want to believe it will all be okay. But I know that it might not be, and that I do better with a game plan in place.
But what I hate most of all is that my past gives me a reason to be afraid.
