An adventurous week; difficult news

IMG_7161IMG_7160IMG_7162I can’t believe that we are back here…to the hematology department at Children’s Hospital. The flashbacks are acute and many.

I don’t know how they do it, I really don’t. I ache for them-these parents. I feel embarrassed to be here somehow and yet…I know I have to, we have to. Something IS wrong for real-just not as wrong, or as real as for most of these people here. The reality of what is going on on the third floor of this hospital for kids is devastating. I AM embarrassed to even feel sad because it seems I don’t have the right to somehow, and they don’t need my pity, and there is literally nothing I can do to help.

I praise these doctors for doing what they do, for pushing forward, for trying their very best, for smiling…
But the real heartbreak are these strong, brave little people who are just getting the toughest childhood imaginable…and their poor parents.

I have been dreading this appointment since my daughter was 18 months old. We found out when she was 11 weeks old, (just shy of 3 months) and cut her “tied tongue” to be able to breastfeed, that she had some kind of bleeding issue. She would not stop bleeding no matter what the tongue specialist, her pediatrician and the ER doctor did. She was loosing so much blood she had to have emergency surgery right away…

This tiny little preemie baby girl who had already been through so much in her very short life…
It was one of the worst days of my life. Seeing her bleed uncontrollably in the backseat when I rushed her to the ER is an image imprinted in my brain forever…

My baby girl was in surgery for hours, her little pale body and all that blood. Afterwards she was groggy and swollen in my arms. I felt awful. She wanted to eat so bad but was too hurt to feed. Seeing her in so much pain was agony.

We spent 3 days at Children’s Hospital before the 4th of July weekend and she still refused to eat. I didn’t sleep at all and was a wreck. Grandma and auntie were home with big brother because dad had to continue working (even though I’m sure that was extremely hard on him).

I remember the nurses trying to help squirting my pumped breastmilk into baby’s mouth with a syringe- it finally worked enough to get her off the IV. She was this little girl in a huge bed surrounded by rolled up baby blankets with wires and monitors…
It was utterly terrifying.

On day two we saw a couple of doctors from the hematology department. They drew a lot of blood to test our baby girl for a bleeding disorder. Since she was so tiny yet-still on the preemie scale, they couldn’t take too much blood from her little body-so we had to come back for a follow up.

The follow up was on the third floor of Children’s Hospital a week later. Baby girl had gotten her color back and she had finally started to nurse again. My mom was thankfully able to accompany us this time, having flown in on the 4th of July withstanding delays and cancelled flights. It was such a support to be able to lean on her as we entered what must be one of the most depressing places-full of sick-really, really sick kids.

My daughter had lost too much weight to be able to draw the required blood panel for the full spectrum of blood disorders so the doctor sent her home with a liquid that makes blood clot in the event of blood trauma.

The tests came back negative for any of the more severe blood disorders…and for leukemia. I have never prayed harder for these results..

Then again the unfairness of it all, seeing all the other kids and their parents. How do they do it? how do they live and breathe when their insides must be breaking.
These caregivers are incredibly strong that goes without saying but…these kids…I don’t have words, little superheroes who just deserve way better lives.

Hoping for them as I’m standing here at the hospital with my two (big brother is in school) happy, healthy (for the most part) children, is the same for them, that they will beat this, they will get better and this will all be a distant memory…

The reality though is a punch to the stomach and the embarrassment of even feeling like this when I’m fine and my kids are fine is raw and present.

This is the 4th time here seeing her hematology doctor. When we saw him when baby girl was 18 months old we still didn’t get to do all of her testing, because of her low weight. I was informed that in order to complete everything we needed to admit her to the hospital for a few days to monitor her while drawing the required amount of blood for the full panel of blood disorders. I declined these tests knowing that she didn’t have the more serious ones and signing papers that I declined treatment was really difficult-was I doing the right thing?

I promised (myself and her doctor) to keep a close eye on her, knowing full well that you can’t bubble wrap your kids (no matter how much you want to).

Fast forward until now, there is no more denial. Every time she bleeds from simple cuts and scrapes it is way too much- abnormally so. Her new pediatrician ordered more labs at her 3 year check up and testing confirmed without a doubt that our daughter does have a bleeding disorder. He sent us straight back here again…so here we are.

This has truly not been the best week..

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Close calls and crying wolf…

So I’m at the ultrasound, by now more worried about any abnormalities than the sinking water, since by now I’m already over 35 weeks and at every check the fluid is low but always seems to be enough!
I go through the routine of telling the ultrasound tec that “no, thanks, we are not finding out the gender” even though I have seen her before (I know she sees so many patients and she might have forgotten however) because to find out so close to meeting our little one would of course be disappointing.
She doesn’t say anything about the amniotic fluid being TOO low but does ask if I have experience increased leakage lately?
I’m not going to answer that, I know I get to see a doctor later and if she questions the fluid, I will have to go from there!

At the non stress test my baby is sleepy, they give me cold water and then juice to try to wake it up but to no avail. Nobody seems too concerned but I do keep an eye on my clock as my mom has already texted that she boarded the plane in LA and I know I need to be out of here pretty soon…

They try to stir the baby with a buzzer which does worry me a bit- not that it will hurt baby but that it’s seems so unresponsive. After an hour, I’m released and thankfully baby has started kicking! I still need to see the doctor and I officially realize that I will be late to pick my mom up. How ironic since I promised her that I had plenty of time and would be there for sure. I’m thinking about the added time of her getting out of the plane and getting luggage, keeping my fingers crossed, I will get out of here very soon!

Nop….

So, the doctor explains that she is very sorry but she feels that she has to send me on another trip to triage because my fluid IS on the border of dangerously low and of course thinking about the added infection risk and risk to baby (still not ideal delivering the little one at only 35 weeks) I have to admit to the random leaking. She thinks I will be fine if the amniotic sac is still there and full enough but she isn’t willing to take any chances, especially given my history.

I make my way over to triage again feeling somewhat defeated, I made it this far. I text my mom what’s going on, hoping she won’t worry and knowing she will understand. Then I call hubby, explaining that, sorry he has to cancel his last appointments to go pick up his mother in law!

At triage they are busy and I keep feeling bad that there are women in there with way bigger problems (and frighteningly smaller tummies) than I, some in immediate danger of delivering unimaginably early. Of course me and my huge frame, feeling fine, are not prioritized, which prolongs things.

I hope my mom turns on her phone as soon as she lands and that my darling husband will be able to locate her and help her with her bags and to the car, not that she needs any help- a seasonal traveling pro by now!
She might get slightly disappointed I’m not picking her up, thinking about the Starbucks and some mother daughter conversation I promised her but I know she will be more worried about the fact that I was sent to triage, probably or at least hopefully for no reason…

Except, there is (almost) always a reason of course, but I keep feeling that this long emotional pregnancy has been full of close calls but miraculously baby and I have made it this far. Since I still have almost 2 weeks to the safe 37 week zone (and three to the ultimate goal of full-term surviving even that week) I do worry however that if they think I’m leaking to much, thinking about the baby not having enough and the infection risk that they will put me on bed rest for the rest of my pregnancy or even (gasp!) decide to take baby out!

Not getting ahead of myself I try to calm down saving my phone battery to hear from mom and husband that she was picked up okay, hoping to be released in time to meet them both at home. I try to focus on how excited I am to be able to show mom our new house and to hopefully get a few stress free weeks of hanging out, a lot more help, yummy home cooked meals and a few outings before this baby comes!

After I have been seen by a register nurse, they monitor my contractions and baby’s heart beat while they wait on the fluid results . She checks me and tells me that, yes! My bag of water is definitely there and from what she can tell intact!
Only there is a slight problem with that…it would all be great, except I’m not like other pregnant women (what else is new…!?).
My water bag was completely intact as my water ruptured with BOTH my other pregnancies as well…

Let me explain! (If I can because it is kinda confusing). My bag was there and seemed intact both times, except it had a small (tiny) tear in the upper quadrant with sweet daughter. It also tore with a little trickle (no gush mind you OR the telltale sign of continuous leaking with darling son) but with me being 37 weeks then and things progressing naturally after a few hours, nobody worried about that. BOTH times I was certain my fluid was NOT broken. BOTH times I thought it was a case of some embarrassing urine leak (or gross; discharge). BOTH times, I didn’t want to be a bother or even mention my wet underwear, because it didn’t follow ANY rules of ruptured membranes found online (don’t even want to admit how many times I have googled this during THIS pregnancy!…talk about embarrassing!)
But I’m glad that my husband and mom urged me to mention the leaking in my previous pregnancies, especially with my daughter!

At 29 weeks, the positive results for amniotic fluid was a big deal and the seriousness of the situation of labor looming beyond real. She was and is truly a miracle, since most (over 80% go into spontaneous labor within 24-48 hours and something like 90 within three days, we were incredibly lucky). They were able to stop my labor back then with drugs (that horrid magnesium) and constant monitoring and every intervention imaginable and it DID work. She was so tiny and underdeveloped when my water broke (read; slowly, randomly trickled) I don’t even want to think about the alternatives to the amazing little girl we are so blessed with!

So as this (know-it-all…sorry I’m sure she deals with neurotic mamas all the time and is in fact very knowledgable) nurse tells me, I most likely came here for no reason, I try to tell her about the quadrants and the small tears and the trickles as well as my previous experience…

Well, that backfires and she snaps “are you trying to tell me how to do my job?”…

Okaaay….

It’s not like I WANT to be right, (actually quite the opposite) but I have so much experience with premature ruptures of membranes at this point, I could probably write a whole new dissertation on this very topic!
I know she doesn’t know this…or me…and feels offended as I ask to talk to the physician on call.
This guy is nice and at least knows what I’m talking about as I red-faced tell him about my soaked underwear and low fluid levels. He agrees about the probability of a tiny tear. I means doctor DID send me here, I’m NOT paranoid NOR crazy!
He turns serious then, since my baby is still considered a preemie he offers to do a more comprehensive test and even suggest the dreaded bed rest at the hospital if the test comes out positive. I try to deliberate with myself, knowing that I know every danger and will know if my water completely breaks, if I start developing an infection and obviously if I go into labor. I also know my mom is probably already at my house and I will be able to, with her help, relax and take it easy following all the doctor’s orders from now on and we are so so close to being okay and out of “preemie-hood”. So I deny further testing and am forced to signs consent form releasing myself from the hospital (against the doc’s recommendation of further testing) but I do (of course) agree to see my doctor the very next day- as well as every day this week to closely monitor baby and the fluid!

I can’t wait to see my mom and my family as I drive home in the darkness and we get a whole week of good days and the fluid levels as well as baby are cooperating before the next close call…

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Put some sunshine into that sharing bag!

And then school starts! I’m always secretly hoping that our son will get a teacher who will understand him, how smart and witty and gentle and loving he is, but who also will have patience and understanding for his wild side and all that energy!

This year I think, I will be a better preschool parent! I will become more involved, sign up for more stuff, become social with the other mommies, suggest improvements for the school in general and classroom in particular, became a “teacher’s helper mom”, buy the school more supplies, volunteer¬† my time…yeah you get it!
But I will also have more time for my son, more patience, more energy, more love. I always go into these plans 100% (think daily schedules, pre-packed lunch boxes, researched themes to talk to your preschooler about and “at home after school lesson plans” as well as tons of planned after-school activities and age appropriate floor play time). However…midway through the first semester I somehow loose some of my enthusiasm (who am I kidding, midway through the first day…).

I do have another kid and even though I’m a mommy …I’m also human! (Who are these super moms??, no, really? And how do they do it!?)

Our first day back, the first mom I see is the mom who loudly called me “rude” last semester.
I always try to smile and say “hi” or “good morning” to the other mommies, especially if the kids are in the same class as my son (last year; turtles, this year; butterflies… “Why were we so much cooler last year mama!?”) but sometimes I feel like without even saying anything, I’m lost in translation. Combine my somewhat stiff and uptight Swedish blood (sorry, can’t help it, and I promise I’m way more outgoing than most Swedes still back home) with the fact that I’m not exactly a morning person (let’s tell it like it is, shall we!? I HATE mornings, I loath them, lucky me getting such a morning person of a son- thanks darling husband!) the result can be rather…misinterpreted. But I am trying I really am (and not only the first day but every day…hey we all have good and bad ones).

So a usual (“slightly” hectic morning, arriving “slightly” frazzled) morning last year I go to drop of my son (nursing monster in the baby carrier) and as I push him forward into the classroom after a kiss goodbye, I turn to leave. As the door opens (the bright green “turtle” door) a couple of mommies arrive on the opposite side presumably without seeing me. I hear the “class mom”, an extreme “goody goody”, “collector of money for gifts to teachers” EVERY holiday (valentines really?! Halloween? Did you know there is teacher’s appreciation day AND “teacher’s day”??! Doesn’t mean they don’t deserve the gifts….I love teachers…just saying..) “organic vegetable giver” and “volunteering her time to the school everyday mom” say rather loudly “he (indicating my son) is a sweet enough child despite his intensity (hmm) but the mom I think, seems very RUDE. I’m not sure how to proceed. It doesn’t feel good and I want to somehow defend myself but what I do instead is turn my heels and walk towards my car. I hope they saw me but seriously doubt it since they are so wrapped up in talking and saying bye to their kids. That one kind of stung! But since then I’ve been pondering if this super mom was right? Am I the “rude” mom. Is this affecting my son? I should definitely make more of a conscious effort to smile brighter, be more enthusiastic, ask more questions (loudly) and be more cheerful overall (take a page out of these mommies’ rule book).

It is so hard though to be like that when it so isn’t me. I don’t mean that I’m rude (or am I?) I’m just more reserved and one thing I refuse to be is fake. I’m nothing if I’m not honest (to a fault…almost transparent with my thoughts and feelings). Anyways, now this lady is trying to have me sign up for some harvest festival I’m almost certain I don’t want to become involved in (it’s for your son something inside me whispers…I almost tell it to shut up… No more guilt). I want to tell her loudly that “NO! I don’t meant to be RUDE but…” I really don’t have time for this. But maybe I should (guilty conscious)…
I probably spend way to much time with my Swedish friends and my son hangs out with their kids not his classmates. Well, add it to the list! And ever the polite person (not rude at all) I sign up for what seems least painful on her clip board!¬† Good job and mommy plus points (ignoring another voice screaming “coward!!”).

Now how do I get out of this??

His teacher seems really sweet- I mean REALLY sweet! (This will be a long school year indeed). She tweets (not the social media version) about love (peace and understanding) but most of all sharing and caring (I thought “sharing is caring”!?). She hugs me multiple times calling me sweetheart and my son darling (I think we are both slightly uncomfortable) as she squeezes his hand (quite compulsively). But the most important part of this year she lets me know is the SHARING BAG!

Last year, we brought toys and stuff from home in the (bright green turtle) sharing bag. My son loved bringing stuff to school and telling his little friends about it! That’s easy I got that down!

Except “you see this year, we will fill the bag with intuition, philosophies, love and feelings” Yikes!…”caring inventions” (please explain…and say it isn’t so!)

Simply mom; “Put some sunshine into that sharing bag!”

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I hasn’t even been a week of school and already manage to mess up big time…can you say “WORST MOM EVER”….

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