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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Move in Chaos and low Fluid Fears

Week 30 started with the news that I’m already 2 centimeters open (even if that is fine for weeks- this is very early) and my cervix is already thinning. The doctors discuss a procedure that is usually considered too late after 24 weeks but these specialist are willing to find a way to keep my baby in a while longer. The window is closing rapidly though and with all the extra hormones baby and I “should” be okay…
It is really up to me if I want to do something “rather drastic” or wait and continue to see them under heavy monitoring.

Continued bed rest at home is strongly emphasized but easier said than done. This is the week I choose to move in to a new bigger house with the following, not exactly recommended, workload. Escrow closes on Friday (of my 29th week of pregnancy) and we move in on Saturday the following day (living on the edge here people!)
We love our new home and are so happy it all worked out but moving a family of four and a dog is not exactly easy…(especially not during a complicated pregnancy)
Even if family helps it’s impossible not to stress and I can feel my poor heart working overtime.

I also have the under active thyroid to deal with and will continue to eat meds for that (messing with my system as I get used to them), there is still protein in my urine suggesting preeclampsia and I now have to see the cardiologist once a week to try to figure out my heart palpitations. This week they will do an ultrasound on my heart and suggest a monitor that I will have to wear for the next three weeks.

After our niece was forced to deliver twins way too early via emergency c-section last week her and the twins are all I can think about. We go and visit the tiny miracles, walking by where our daughter had her bed, getting major flashbacks. I feel all sorts of emotions and really try to offer my support without imposing on the young couple who I know have a long road ahead. The babies will have ups and downs but are in excellent hands and will get to stay in one of the best NICUs until they are ready to come home with their loving, brand new parents who have already grown up with the responsibility and are facing this unexpected challenge like pros. The twins will be okay and we are all so very proud of both babies and parents!

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Other week 30 highlights include stepping on a wasp (my foot did not need the extra swelling, trust me) when we are already late for my son’s preschool, taking care of our large goofy dog who gets stuck (head) in our new gate and hurts her paws dragging in blood all over our new floors (poor sweetie) and being forced to see my doctors every single day while figuring out childcare when my husband as well as mother in law are out of town.

The house obviously needs unpacking and we are trying to live in the midst of chaos. My son’s school is suddenly far away, I have no idea where the closest grocery store is (and hello Starbucks drive thru?) I even have to google map the hospital and doctors’ offices. Luckily I had expert help unpacking the kitchen and bedroom but it’s still difficult to get into a daily routine. Hubby’s family has been awesome but I still miss my own mom and her expert, calming advice and great organizational and “decoration-al” skills.
Even though this house and yard (loving the pool and palms) is a definite upgrade and I don’t miss our old house at all (except the memories), there are a million things to get done.
I’m starting to feel sick and tired of all the things we need to fix around here and it still feels like unfamiliar territory.

Husband leaving only days after moving in is not ideal and it feels like since I should NOT be lifting, unpacking or even walking stairs I can’t do much to make any progress in the house. I get annoyed by all the driving to school and everyday doctors appointments and while in the house all I do is directing handymen, gardeners, electricians, TV and Internet experts, pool guys and pest control people. To be honest I’m overwhelmed and worried about both my pregnancy and this move working out for the best. I know hubby stresses about all the hidden fees and payments and having him work this much to alleviate that, is not exactly easy on me.

Our dog spends her first nights whining and sad and even if the kiddos love the house, they seem frightened at night and I feel like there are hidden dangers for little kids everywhere. I drive myself crazy with all the lists I am writing of things that need to get done and am hating all the boxes everywhere. This is definitely unfamiliar territory for all of us!

I’m so glad we got this house and I know it will be our dream house after a few cleanings, fixings, screwing-s, tweaking-s changes, upgrades, (as well as getting plenty of unwelcome species to move out) but right now we are in the thick of things.

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After declining the invasive procedure and resting in the fact that I made it another week and that baby looks good and my body is staying the same I feel calmer!
As week 31 progresses and we get more stuff done, unpacking the kid’s rooms and getting accustomed to our yard, the house, the gate and the neighborhood and surrounding areas I feel better and my love and certainty of this house is getting stronger. I get to take an awesome break celebrating this new baby with amazing friends at a fancy afternoon tea at the end of the week which I love!

But the next day I feel the familiar leaking sensation and freak myself out yet again…what if my water just broke…?

What if this time the baby comes right away?
It is still way too early…

As the last trimester approaches…

When I got to take my son home from the hospital I felt like everybody was insane- they trusted that this brand new human being would be safe with me, ME?
Yes, yes, I had some experience and loved babies and in the back of my head I knew that you didn’t have to go school, get an advanced degree or a certificate in order to procreate or to take your offspring home but yet again, maybe there SHOULD be some requirements here!!!
And there was my instructional manual, shouldn’t they after all come with one? Wasn’t that my parental right? Where were the laws for this stuff?
And the mandatory classes?

I had a faint memory of some breastfeeding class that was optional (you heard me, optional) that I had slept through in my pain killer induced haze after he was born and therefore missed, like “okay, it’s optional to keep this tiny human alive with my body…or not”.

I looked down at my first born with wonder, did they really expect me to take care of him…you know FOREVER? It’s not that I didn’t want to, because even if I didn’t exactly felt that overwhelming unconditional, all consuming love the second he was born (im terribly ashamed to admit this) red faced and screaming- him (well, let’s be honest both of us) and with 18 brand new stitches in the worst place you can think of (me, definitely me) I did now already love him with all my heart. But it was because of that love I wasn’t ready to take him home yet, he was just born YESTERDAY after all (and he had already been poked and prodded so much I already felt like I had failed in the mother department). Why wouldn’t they let me stay for at least a week or two? (Or you know a year) in case something went wrong? I mean I hadn’t even gotten my real milk in nor had I mastered diapering his tiny behind…and oh horror, don’t get me started on the all essential “swaddle”.
At least keep us in this safe environment until you are sure we can make it in the outside environment (by the way what “car seat test- the nurse barely glanced at the thing, only checking that we had it- shouldn’t they at least arrange a “ride along”?)

I know many Moms have been talking (and indeed) writing about this very topic but you certainly don’t realize how real it becomes when they wheel you out after having delivered (such a fancy word for what it really entails) that (there is now way I will describe him as “tiny” here) human through what seems to be an impossibly narrow tunnel (breaking all sort of stuff in his way) and he is laying there in your arms. Wrapped up in blue and pink, naked and glorious and completely new and you feel such pride- like “I did this, I made him” (with some slight help but that couldn’t be further from your mind because YOU did this, no one else) and everyone around you smile and some congratulate you (as they should because you just popped out a human from your very body). It’s not special it happens everyday, every moment by most women but yet it is so very VERY special- life’s biggest miracle!!!
And even though it’s messy and ugly and long and hurts like HELL, you somehow want to it again and again! (And again- damn endorphins) and right afterwards (complications and all) you swear- with an angelic smile “it wasn’t that bad!!”.

Be careful what you wish for I guess…

Because you really don’t want to stay in the hospital and you really want to take your baby home with you when you leave.

Everything was different with my second born. Everything was different with my daughter! An even though everything turned out great in the end (and she is now the most precious, sweet, charming, funny, stubborn, determined almost 2 year old little princess), it somehow wasn’t fair. To leave the hospital in day two with a perfectly healthy (well minus a collar bone) baby is something every mother should be able to experience (worries and all). Because as soon as you become a mom, you step up to the plate and you become a MOM and you should be able to take responsibility for that life you created right away (multi-colored poopy diapers, sore nipples, no sleep and all). You should NOT have to be in the hospital for weeks and weeks without your loved ones (and air) for the last trimester of your pregnancy (without the ability to even go to the bathroom… or forget about a shower). You shouldn’t have to cry and worry that there is something majorly wrong with that tiny human inside you (or check her heartbeat with a huge band around you attached to beeping monitors) around the clock, or be wheeled the bi-weekly ultrasounds (scaring you more than informing you) or be forced to eat hospital food for a grand total of 39 days. You shouldn’t have to google diagnoses and conditions and treatments options for your baby before she is even born, or meet with social workers and psychiatrists and specialists or count the days she is kept in there with joy and hope but apprehension.

Don’t get me wrong, I’m thankful for catching the fluid around the baby being low in time, I’m thankful for our hospital stay, every shot for baby’s lungs, contraction stopping medicine and blood draw (well…) every nurse and Doctor and specialist and ultrasound but most of all I’m thankful for that little baby girl being able to hang on in there for as long as she did!

The relief when she was born alive and well (finally breathing) and perfect was naturally the best day of my life. Amazing!!!

What came after with the 16 days in the hospital for baby, the monitors, the trouble breathing and eating, the beeping machines and cables, the fear and the massive weight drop- to my life-threatening infection and added hospital stay were less than amazing but we MADE it!!!

We were amongst the lucky few- this I know! Looking around at the babies who were born much earlier and/or had it much much worse and their poor parents made my heart sink and my body ache. The NICU is not a fun place whether you stay days, weeks or months but some definitely have it better than others. We were lucky for sure and just thinking about what could have happened…

I’m almost to that dreaded week 29 in my current pregnancy and I’m hoping and praying that things will be great!
It is however bringing up a lot of feelings (how could it not). I know I might make it to 41 weeks this time, that every pregnancy is different, that I’m under the best possible care and that I’m taking all sorts of preventative measures. I will be fine and so will the baby! This I feel in my heart! – but that little, tiny doubt is devastatingly real…

I’m not writing this to be negative, to seem fearful or ungrateful or to throw myself a little pity party- I’m simply writing this to be real and to share with you what I am feeling as I’m approaching my last trimester with this baby…
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