Being re-admitted …

Up at the triage they stare at my hunched over shaking, shivering self. Nurse Kate quickly and efficiently tells them I probably have a very high fever and that I am three days postpartum.

She asks my mom if we got it from here, looks at me and squeezes my hand “good luck” and off she goes.

The triage nurses aren’t as efficient however, instead of taking me to a room they are asking me a bunch of questions that I can’t really answer in my state. I just want to lay down with a bunch of warm-no hot-blankets (where is a sauna when you need one?) and for these shakes to go away, they are seriously starting to bug me, like for real.

I wish I could be down in the NICU, healthy and strong for my baby girl, feeding her and then meeting up with the rest of my family, picking up some to-go food and sleeping in a warm cozy bed at home tonight.

I really don’t want to be in the hospital that is for sure, and I really really thought I was done dealing with hospital staff and nurses with their questions. I am too sick however to reflect much on take-out food and annoying nurses and a little too scared to want to walk up and leave, besides again, I don’t think my legs would carry me.

My mom seems even more worried than before as she keeps telling me to try to relax. I am so stiff and my muscles are already aching from shaking so much but I can barely tell due to, you guessed it, the violent shivers (it’s like my body is an earthquake refusing to stop).

When they take me into a room (finally) they have even more questions (of course they do) but as they take my vitals, they refuse to tell me anything as usual (starting to get used to this). I feel mad in between the shakes, enough is enough and I would really show my anger had I not felt that I was going to pass out any moment.

My only request was warm blankets (I know they have them these sneaky nurses, I have gotten them before, for example during my ultrasound) but they refuse to give them to me. Not until my mom, seeing her daughter suffering asks why, they tell us that it could mess up the readings on my vitals, for example my correct body temperature.

They haven’t told me yet what my temperature is but when I ask point blank the nurse tells me that it is not crazy high, around 103. I hate these Fahrenheit temperatures, they make absolutely no sense, come on, Celsius is both understandable and easy; convert already! (yes, I’m worked up, excuse me and yes I know it is not their fault I’m sick…or is it..?).

At this point I feel incredibly nauseous, I tell the nurse as my mom tells me that I will not throw up, it is just in my head, trying to calm me down. The nurse wisely gives me a little plastic thing to throw up in “just in case”. Now don’t get me started on these thingies, they are like plastic bags (more like cones though) slim and cone shaped and they do not seem like the perfect thing to vomit in. Ever heard of a bucket? I know this is beyond gross but how do you even aim? I am throwing (mostly spitting up) in my little plastic cone as my mom tries to convince me to calm down and lay back, except I can’t.

Literally I can’t, my neck is so stiff and I am still shaking so bad, I can’t tell my muscles to relax enough to lean (let alone) lay back (which also makes aiming and spitting up into this plastic thing next to impossible).

In the back of my mind I also realize three things, I have to pee really bad, I fear that they will keep me here over night and I haven’t called my husband to fill him in yet (peeing obviously being my top priority).

That being said I don’t think I can get up so instead I spit up some more, try taking my iPhone from my mom (who got it from my purse) but my hand is shaking too much to even hold it, I momentarily get mad a my headband (don’t ask, it is in my way) and finally just have my mom text my husband that I will probably be re-admitted to the hospital (yay me).

It is somewhere in the middle of this when the real vomiting starts (that is right, here comes my lunch…sorry guys). My husband keeps calling after receiveing my text but I just feel too weak to even talk to him.

We keep waiting for different nurses to come into the room, check something, mumble something to each other I hushed voices, tell us absolutely nothing and leave again.

I keep getting mad at the one nurse who stays, because I really just want to know what is wrong with me so that they can fix it and I can be on my way.

I also really don’t want to stay in the hospital another night but I am sane enough to realize that this is serious and they will not release me like this.

My mom holds my hair while I’m throwing up like I am a little kid all over again and she keeps telling me that everything will be okay and to go easy on the poor nurse (she is probably just an intake nurse who knows nothing…and I am probably acting very scary right now, not my best moment).

My mom will agree however that they give us absolutely no information and she is stunned by that (not what we are used to from back home).

Another nurse finally comes in and lets me know that the doctor is on his way. That makes me feel better, maybe he can diagnose me and tell me what is going on and finally give me some release.

I want to have some medicine but they are refusing to let me take the Vicodin I brought with me, I am in pain, I was ripped open and a baby came out of me a few days ago, remember ?? and I am being denied my pain meds hours overdue.

I am scared the doctor will “check” me as I am extremely sore and in no rush to relive the trauma from my labor (can you say ouch!!!).  I am still bleeding a lot and my stomach really really hurts. They try to convince me that he will not check me…and to try to relax (tough chance). Unfortunately, I have learned not to trust what they say however. The nurse also tells me that we have to get my fever under control because it’s now 104.6 and get me into a gown (oh green gown, how I missed you) oh and into giant see through underwear and a gigantic pad (lucky me) and I need to stop shaking (easy for them to request).

The new nurse checks my vitals again, sucks in air and exclaims “Damn”…

 

 

 

 

The shakes are back…

As we drive to the hospital to feed our brand new baby girl (I can’t wait to see her, to feel that I have her, that she is real) I feel hot and cold at the same time, the dizziness and overall discomfort won’t go away.

I feel my forehead which is warm but not hot and compare with my husband’s. Like a child I ask my mom to feel it too and she agrees, definitely warm but not alarmingly hot.

Maybe a slight temperature, but like I said before, I gave birth only a couple of days ago and I get a fever for basically everything so I’m not that worried about feeling this icky.

Except when we reach the hospital, I feel worse…

I am hotter and suddenly the shakes are creeping up on me. As we wait for our turn to get a sticker, be allowed in and wash our hands (I sent my husband to Mc Donald’s with our son to get some fries) I tell my mom to hold on.

I have to sit down because the room starts to spin and here comes my friends (more like my enemies) the shakes from last night. They get worse and worse and my mom tells me to stop shaking, like she did when we were kids when we were coughing or had the hiccups (which might sound a little brutal but actually do work).

Like a good daughter I try to listen to my mommy but I just can’t stop shaking for the life of me.

I tell my mom that I need to go the bathroom, trying to tell myself that I can control this but at the same time starting to wonder what is wrong with me, something like this has never happened to me before.

Since the restrooms by the NICU are being cleaned my mom searches for another bathroom on the first floor since I am now shaking so bad, I don’t feel that I can walk. I suggest that we ride the elevator up to the third floor where I know that there is a bathroom for sure since I just spent 2 days in recovery there (on the third floor not in the bathroom).

I really want to get away from people, I feel like they are staring at me and I really need to get a hold of myself. The trip to the bathroom didn’t help, I have to concentrate hard on walking and then there is if possible even more blood in the toilet (but still not enough to soak my pad but I’m starting to think enough to be concerned?) and the shakes are getting worse not better.

We go back down to the NICU and I can’t even focus on seeing my baby (sleeping peacefully, clenching her tiny hands).

My favorite NICU nurse, Kate is there, telling us she needs to eat in about twenty minutes (the baby not Kate that is).

I am now starting to realize that I will not be able to feed my baby, the shakes have turned violent and I am now so so cold, freezing actually.

I don’t know what I tell my mom, something about going to the bathroom again but I know she looks really worried now…

I walk as fast as the shakes will allow me to the bathroom right outside of the NICU and luckily the cleaners are all done in there. I make it in to a stall before I sink to the ground, thinking something is really wrong here…

I try several times to get to my feet but I’m shaking so much I have to make attempt after attempt, clenching my teeth as I’m hugging my body, trying to zip up my sweater further than it can go and telling myself that I need to make it back into the NICU to tell my mom we need to go home.

All I want to do is crawl into to bed with about a hundred warm blankets, fall asleep and just forget about how cold and shaky I am and hopefully wake up feeling better.

I also attempt to call my husband to come pick us up but my phone keeps sliding out of my hands and forget dialing, it is a lost cause, this is starting to get ridiculous.  

As I walk back into the NICU, I believe even more people stop and stare at me but I have a one track mind, people fade out of my vision and I can see that my mom is now looking more than concerned.

I tell her that I don’t think I can feed the baby and that I need to go home but as she tells me to stop shaking and tell her what is wrong and my eyes well up with tears as I can’t, she takes matters into her own hands. She usually lets me (and my sister) do the talking here (in the US) as she is Swedish (but quite good at English I might add) but right now she goes to find the nurse.

I don’t even know what they are saying as I become less and less aware of my surroundings, all I know is, I WANT to stop shaking and get warm. Oh why, why is it so damn cold in here, could they maybe turn off the A/C, it’s ridiculously cold for these tiny poor infants!

Nurse Kate takes one look at me and I can hear her tell mom that I must be running a seriously high fever. No I protest, it’s just the shakes (whatever that means). She leaves just to come back seconds later with a wheel chair. I do think I can walk (besides where am I going in that? I have had enough of wheelchairs for I don’t know…about a life time) but when I stand I realize that I absolutely can’t walk and am actually grateful as I sink down in the rolling chair.

Kate asks if I can direct my mom to triage (isn’t it only extremely pregnant women and women with pregnancy complications that go there? I have time to think) but she takes another look at me and apparently determines that I am in no condition to direct anybody anywhere. And off we go to the elevators and triage, Kate wheeling the chair and my mom hurrying after us.

 

 

 

In the midst of chaos…

I bring all four kids to the specialist my oldest is sent to, including my fussy 8 months old, my (extremely) terrible two:er, and my stubborn preschooler.

It’s after school and late afternoon. It been a long day and we are all hungry and cranky. My patience is running thin and I am frankly more focused on breaking up sibling fights and soothing the baby, who was brutally awakened from his nap when he was put in the stroller, than what the doctor is saying. 

It’s October and the kids can’t wait for Halloween, but for them two short weeks seem like an eternity.

My two middle kids are loud and arguing over some “spooky” stickers the receptionist gave them as we came into the doctor’s office.

It’s hot and the baby is crying. I feel like I can’t keep the kids calm and concentrate on this appointment for my oldest if I pick him up. 

Buuut…he is crying…loudly.

I pick the baby up and promise ice cream to the kid that will just keep (shut…) quiet. 

My two year old who doesn’t care about anything, least of all ice cream, threats (treats?) or promises, gets even louder (if that’s possible). The nurse gives me a nervous smile and slips out of the room.

The doctor however is very nice, it’s like I first notice as he tells me I’m very brave and that he has three himself (and that sure felt like a lot, especially when they were little like mine). I smile and nod and apologize while cursing inside, why can’t my kids just behave for once? 

The doctor examines big brother who sits up in a big black leather chair (possibly plastic) and the doctor grins and talks to my son in a very reassuring way, treating him like you would a fellow adult, not a kid, and I think my son appreciates that (and so do I). 

Then all of a sudden, in the midst of me raising my voice in an attempt to sound “scary” ,to no avail of course “that’s IT, no dessert…ever”, the doctor’s good mood seems to disappear. 

I barely notice of course since my sole purpose at the moment is getting my kiddos (and myself) our of here in one piece (and as quickly as possible).

“Did you hear me?” He asks and I barely do over the baby’s wailing. 

I need to take your son in the other room and examine him under the microscope…

“Oh, eh?! Okay-go ahead!”, I’m ashamed for even thinking; great that gives me a few minutes to discipline the kids.

“Okay if we just stay here, kids and stroller and all?”…

“Actually, mom, you better come with us”

Shopping delight…cut short!

We go shopping, well if you call Target and Babies r us shopping…I haven’t been out for weeks so I’m not picky.

I try to concentrate on what I really need; the problem is we need so much, at least according to me.

My mom is an expert shopper but she is more interested in things for the house (where she has been cooped up) than cute little pink baby outfits.

I still can’t believe it is real. I don’t think it will completely hit me until we get to take her home, we have a baby girl!

Finally I get to buy girl stuff, don’t get me wrong I love shopping for my son but come on, have you seen the girl stuff for babies lately?

We need some boring things as well, what we like to call “essentials” and as I walk through the aisles at Target I feel more and more tired and slightly dizzy as I’m gripping the red cart tight, leaning in to it as I’m pushing following my mom’s excited stride.

Sometimes Target has the ability to get you very tired though and I haven’t been out of bed for 4 weeks basically, so of course I feel dizzy. I decide to power through, we have Babies r us after this after all, where I’m naturally a frequent buyer with all the essential VIP and bonus cards. There is something about a store full of baby stuff (pregnant women and babies), bright colors, new beginnings and hope!

My ultimate wish growing up was always (ALWAYS) being a mom, now I get to dress real live dolls!

Suddenly I feel faint in the middle of a (I have to admit, sorry mom) home decoration (?) aisle (I think it was lamps, “we do need one for the baby’s room and one by the pool table”) and stop for a second. My mom, still talking about the wonder of being out of the house (poor woman) notices that I am not answering her and turns around, zooming in on me with her mom eyes as she exclaims “you don’t look so good”…

I’m telling her that I’m just tired and that I just gave birth a couple of days ago for crying out loud, of course I’m feeling weak in the knees and there is no way I’m cutting this outing short!!

We get the Target shopping done and I manage to hang in there. Right outside, there is as Starbucks (you can’t go many places without a Starbucks but my hospital room didn’t exactly have one close by). I am craving caffeine but since I’m worried about it getting into the milk I am pumping, I have to “settle” for the double chocolate chip frappe I got more or less addicted to during my pregnancy. Mom never says no to a coffee so we push the cart toward two available seats (it’s a very small place so space is limited) and I’ll go order our drinks.

I still look pregnant so I worry that I will have to dodge some uncomfortable questions when I feel the barista glancing curiously at my stomach (nop, kid is out, come on please don’t ask, and luckily she doesn’t…I mean who cares…well after everything I shouldn’t, but I can’t help it, I care just a tiny bit).

Soon that is the least of my problems, I suddenly feel a big gush in my underwear where I have the biggest night diaper…I mean pad ever made, and it seems like it is leaking through (sorry about the TMI here people).

I go put the drinks in front of my mother and excuse myself to run to the bathroom. Maybe this outing wasn’t such a bright idea after all, I would much rather be in the comfort of my own house than at a Target restroom.

I do have back-up pads in my purse though but I am bleeding a lot (A LOT) and I don’t remember it being this bad after my first born. A little voice whispers in my head something about soaking a pad in an hour being bad but I’m pretty sure it’s been more like two hours since we left the house and I put in a new one, besides I gave birth only three days ago…

Reassured that it is normal and cheered up by the prospect of my frappe and going to Babies r us, I leave the restroom and head back to my mom.

At babies r us though, as I stand in line a severe headache is brewing, not even the cutest baby dresses size 0-3 months can hold my attention and I start to worry that I am coming down with something…

 

The worst day of my life …

As they roll him in, my heart almost stops…

I’ve never been so scared in my entire life. My perfect, beautiful, smart, witty, wild, energetic, slightly crazy (did I mention perfect) and sweet firstborn.

He is frightened and nervous and teary eyed, and I don’t blame him. He is old enough now to realize what is going on.

We have been waiting and dreading this day for so long.

It was mid-October when we found out, right before all the Halloween festivities…

It could have been worse of course, it could have been SO much worse…

But even if it is not the worst, this is BAD and the single hardest, most difficult thing I’ve ever been through. My heart bleeds for my son and I soo wish I could take it all on. Why did this not happen to me?

Give it to me, please just give it to me instead.

But of course that is impossible.

This is IT, this is D day-and all I can do is hope and pray that the surgeons will be successful, literally having our son’s life in their hands….

First he got really, really sick. It was summer and (unbelievably) hot but he was on the couch cold and shivering, skinny and pale. Not himself, no energy, sleeping away the days, not even interested in TV and his beloved video games.

At 104 F (40 C) for more than 3 days we (daddy since I was on bedrest after surgery) took him to the doctor who ran ALL the tests, but the fever would not stop rising…

We went back to doctors who were concerned but nothing too alarming (or life threatening-you should see what he was tested for..) was confirmed.

But the multitude of symptoms accompanied the fever had us go back to the doctor yet again…

There was talk about taking him to a hospital in LA by helicopter but luckily the test they took for that suspected illness was negative, so was Mono and pneumonia, while other bacterial infections did come back positive.

We thought that was it and the antibiotics would cure him but he just wouldn’t get well.

We’ve never seen our first born so sick…

Your mind goes to scary places…

Two strong doses of antibiotics for a total of twenty days. He finally slowly got better, thank God, but one symptom, even though better, stubbornly remained.

In the Fall, when it hadn’t resolved (and he kept complaining) we called the doctor back. Our regular pediatrician was out on vacation so he got schedule with another doctor.

Our son was back at school but pale and still complaining the afternoon I took him to his appointment.

Since the new doctor didn’t like what she saw, we were sent to a specialist the very next day…

Difficult, personal and emotional subject matters…

As some of you know (or might have guessed), I (we) have been going through a difficult time lately, and no I’m not talking about potty training our almost 3 year old (yikes) or my 12 months old stopping nursing abruptly (ouch!).

I privately wrote about what was going on as it happened, because as you now know, I write about everything. Writing helps me process bad times and negative thoughts (as well as good times, positive thoughts and everything in between).

I thought about turning my writing into blog posts, but even though I have been writing about difficult, personal and emotional subjects before, I realized that this is just TOO personal.

I want to help people through my writing, help people feel less alone and for parents to know other parents are going through the same thing (or similar situations). That YOU are NOT ALONE!!

If my writing could help someone (anyone) else in even a small way, addressing difficult subject matters, even though emotionally draining and extremely difficult at times, would still be (SO) worth it.

But since this “situation” isn’t about me, I now know that it wouldn’t be fair for my son to blog about this.

He is not a baby or little kid anymore and I feel like he should have a say in what I share when it comes to his body and what is happening to him.

I still want people to know that “bad things happen to (a lot of) good people”, that “parenting is (extremely) hard” and that “no you are NOT alone” and how to stay grounded and positive in front of and for your kids, how it’s so SO difficult but SO important.

I feel like explaining this in a blog post about the blessing that is our son would be beneficial in healing not only myself but perhaps readers relating to receiving difficult news about one of their kids.

Some news are overwhelming and hard to hear, digest and handle. We got such news in October of last year…

In my next post I will try to explain the mother angst and agony trying to stay strong for my family and for my son, while knowing some mothers have it way, way worse.

We were the “lucky” ones and the indescribable relief is overshadowing everything else the last few months. The worry isn’t gone completely (and will never be) but for many unfortunate parents the worry is constantly there and heightened compared to the “normal” worries that simply comes with parenthood…

My heart goes out to all parents of sick, hurt and ill kids and I know that we are beyond blessed as a family by the outcome of all of this.

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Finally, Finally HOME!!!!

It’s so wonderful to be back home again, (breathing the fresh air outside of the hospital while waiting for my husband to get the car feels great), watching my son’s eyes light up as I walk through the door feels amazing. I have missed him so much and my dog, my house, my home, our routines, our life.

My son takes me by the hand and leads me on a tour of the house. This brings tears to my eyes, have I really been gone that long? And he is showing me all his toys, naming them one by one. He has grown up so much. He is talking a lot and he has grown taller. My mom is also relieved to see me home (and I think she is excited about the prospect of getting out of the house with me tomorrow, she has been alone with an almost 3 year old for 4 weeks after all).

I can’t wait to sleep in a real bed, but my own bed will have to wait since I’m not allowed to walk stairs quite yet. My mom has made the pink guest room downstairs pretty and clean for me and I really appreciate that.

First things first though, spending some real quality time with my littlest man. We read books and talk and play outside. We watch the Swedish cartoon “Alfons” and pretend to be trains and I am the coolest parent in the world until Dada comes home that is.

These two, the main boys in my life have grown even closer over the weeks and my son idolizes his father. It is rather sweet and completely understandable since I have been away for so long.

My son is my little bestie, my sidekick, we use to hang out all day, every day and I can’t help by feeling a tiny sting of jealousy and a little hurt but also guilt for being gone for so long. I just left one afternoon and didn’t come back for weeks. That is hard for a 2 year old to process. I know that I had to go but I also know that that is impossible for my young son to comprehend.

That night I try to go to bed early, I am beyond exhausted and excited about the prospect of not sleeping in a hospital bed, wearing a hospital gown and with nurses checking on me constantly, but I stay up a bit, talking to my mom.

I’m so glad that she is here; when you are the most vulnerable all you want is your mother!!!

We talk about all that we have been through, our tiny little girl still in the NICU, all our fears and that it can only get better from here on out. The feeling of gliding in between cold, crisp, clean sheets in my own house with my family close by knowing that I am finally home safe and sound, snuggling in getting comfortable is indescribable.

In the middle of the night though, I wake up with the shakes. I shake uncontrollably and no matter what I do I can’t get warm. I am way too weak to get out of bed to find more blankets and I feel like my legs wouldn’t carry me. I collect what feels like my last strengths to pull the covers tightly around my body and pull the blanket on the end of the bed on top of me. It is so damn cold and I can’t quite understand why, I feel delusional and it’s hard to think clearly. Although freezing (I don’t think I have ever felt this cold before, not even outside on the coldest, snowiest winter day) I am also extremely tired and it almost feels like I am passing out, gliding into a dreamless state of mind where it is bone chilly, dark and scary. Before I slip into the black nothingness though, I have time to feel frightened “what is happening to me?”

In the morning I feel much better, giddy even about being home, knowing that I get to share breakfast with my loved ones and then see my brand new love at the hospital, but first some shopping.

The nightly shakes and tremors mostly forgotten, but not entirely since I do mention them to my mom (hesitating for a moment thinking that everything might not be okay after all) I shrug the fear away and dive into my day.

I pump milk with the hospital grade pump the lactation expert taught me how to use and that we rented before leaving the hospital, jumping in to some normal clothes (yay, only downer is I still look about 5-6 months pregnant) and scoping up and kissing my giggling son (“mama stop it) I start planning the day with mom and my husband.

But the day doesn’t exactly turn out according to plan…

 

 

 

 

 

Discharge papers and Boob doctors…

There she is, the stern looking nurse with the discharge papers (eh, wait just one minute…)….

I try to explain that I had a fever last night (no reaction), that my vitals were bad and that they wouldn’t even allow me to see my baby (this will surely clear things up).

The nurse doesn’t look apologetic telling me that “of course I can stay”, that she brought the wrong papers or that naturally they listened to the doctor’s recommendations for me to stay so they can keep an eye on a possible infection and so I can be close to my baby- at least another day or two.

No, this nurse starts talking “hospital procedures” and “lack of rooms”. They had told me the day before that they had hotels nearby that parents sometimes stayed at to be close to their babies- the only problem with that for me is that I’m not allowed to drive yet (plus I don’t have my car here) and I am still too weak and hurt to walk to the hospital from any hotel.

They then said that it would be possible to pay to stay at the hospital (in the same room) if they had rooms available. But this nurse is now telling me that that is not an option either (it’s apparently a “busy time” right now; lots of people having babies I guess…). Dislike (not people having babies but the nurse and her attitude).

But wait, of course she hasn’t heard the doctor’s recommendation yet, she couldn’t have, this will naturally change her tune…?

It doesn’t, she says she understands (not sounding like she is anywhere near understanding) and that the hospital rule is 2 days stay after a vaginal delivery (well mine wasn’t exactly a regular vaginal delivery) and that they have to send me home since I have no fever (well, what about last night?) DESPITE doctor’s recommendations (they are after all just “recommendations).

Really, they are really going to kick me out of a hospital? The hospital where my daughter “lives” and while I’m trying to get the hang of breastfeeding and the whole “producing milk thing”.

She leaves me with an “you have until 3 pm” (which is a very unreasonable time…3? Why not 5 pm like after a workday, 6 pm? or even 11 am or noon would have made more sense like check out times of hotels).  I know I will have to call my husband back and explain this sudden change. I am going home today, it doesn’t seem like there is any way I can convince this nurse otherwise. Of course I am excited, I dreamed about this moment!

After over four long weeks, finally I get to feel, smell and breathe fresh air, hang out with my family in my own house, my home, my bed, yes, I can live with that decision; but what about the way I’m still not feeling healed and how will it feel leaving my baby girl here?

How can I go home without her??

I have (what I think is) my last lunch here before I head back down to the NICU to meet up with yet another lactation consultant.

This one is special, I can tell right away, she tells me she has a PhD in boobs! (I’m serious).

She also explains that my baby is way too premature to have mastered breastfeeding yet. She is watching us struggle for a while before telling me that not only has my baby not figured out the whole eating/breathing/swallowing thing (tons of alarms going off scaring me half to death every time) but she also doesn’t have enough energy or strength to get enough milk from me.

Verdict: I have to continue pumping, but it also means that it is NOT my fault that she is not getting enough or latching on properly (I had enough guilt when my son couldn’t latch on but instead butchered my nipples to blue and bleeding versions of themselves; let’s just say we were both crying).

This special Lactation consultant PhD also makes me feel better about not having enough milk, explaining that it just hasn’t come in yet… but it will. She tells me to trust her and she also gives me specific instruction on how to try to breastfeed; with a syringe and a little tube leading to a formula bottle attached to a nipple shield on my breast I feed my baby only for a minute or two before I give her the bottle. I always have a half hour window to feed her, otherwise she will get too tired and when preemies run out of energy they don’t gain weight. The way baby girl is not gaining weight is worrisome BUT what’s worse is, she is loosing weight and rather rapidly, despite the added calorie formula.

I instantly like this boob doctor and I trust her. She advices me not to talk to any other lactation consultants, at least not to take their advice (uh oh), they apparently have old school ideas (and no doctor degrees!) and also aren’t used to dealing with preemies (who can have very special eating issues).

The kooky lactation consultant who told me I hadn’t enough milk and made me feel bad had also made me feel bad about agreeing to supplement with formula, clearly she had NOT been trained by this very knowledgeable Dr. Boob in front of me. The other consultant was also wrong about the milk supply and about banning formula. This “Dr. milk expert” tells me that of course formula supplementing is okay before I get my milk in, the main focus being keeping my baby alive!!!

It makes total sense and I feel better with a new resolve to pump more, longer and “better” to be able to give my baby the good stuff, what they call “liquid gold” around here.

It also makes me question though, if the kooky one was right in recommending having my daughters tongue clipped because it was too tight…

Once I go to my room again to pack my things up before my husband arrives, I notice glancing down at my feet that they look twice their normal size. I sit on the edge of the bed (still sore, ouch!) pulling my socks off and…oh my goodness, my feet are extremely swollen, HUGE really.

I try to google that and everything between “it’s a normal postpartum symptom” to “its postpartum preeclampsia (postclampsia?) and could be serious” and of course, “its cancer and you will have to cut both your feet of right now…” pops up.

Slightly alarmed I call on the nurse, it’s the stern one and she is not too worried, saying there is water still in my body, hmm okay then, but why am I still not feeling well?

I sign that all the information for the birth certificate is correct, receive a newborn shirt with the hospital logo (my baby would drown in this) and a really ugly knitted hat. As I gather up my things I take a moment to think about what this means, the discharge papers are signed and the instructions for self-care at home have been read and explained.

Home; I am finally finally going home! No more nights in hospital beds for me, I get to be reunited with my family and my little baby will soon follow…

or so I think…

 

 

 

 

NICU no entry ✋🏻⛔️ ✋🏻

Oh, that is right, my fever…

I completely forgot with all the fear of my baby’s apnea episode. I try to convince the nurse that I am fine but she is determined to get me back into bed.

I’m not allowed to go down and see my baby (and think of all the other babies) until my fever is down.

With a helpless sigh I give up, understanding the infection risk and agreeing that I wouldn’t want my- or any other-baby to get ill because of me (talk about a bad mom, getting a bunch of preemies sick).

Apparently my urine sample also came back with too many white blood cells and when they check my vitals again, they don’t look too good.

I wish I could have gone down to hold my baby but instead I worry about getting her sick, could I have gotten her sick already?

Could it have come in the few drops of breast milk she might have gotten in her mouth?

The nurse taking care of her reassures me at the other end of the phone line that this should not be the case. I’m so tired of should. What if I have gotten her sick?

I know some preemies don’t even survive early infections. I also know that she is in one of the best NICUs in the country and that they do everything in their power to take care of these preemies and their health!

I manage to go back to sleep (and sleep for a long time) and luckily I wake up completely fever free and my vitals look much better!

My mother and father in law come by in the morning, I get a pretty cross necklace that I have been eying and my mother in law fusses over me, helps me to the bathroom so I can brush my teeth and get ready in order to look somewhat normal, and she remakes my bed.

We go down to the NICU together, my father in law wheeling me down in the wheelchair. After we sign the necessary papers that we are not sick (I’m thinking about last night’s fever but they told me it was okay to come) and haven’t been for the last 72 hours (hmm, where are those handy mouth masks they wear in Asia…?).

When we try to roll through the locked door in to see little Madeleine (I really want to see for myself that she is okay after last night’s scare) the door does not swing open as it normally does. Did they not press the button to unlock the door? I guess we have activated the automatic shutdown lock since we have been standing too close to the door with the wheel chair and by doing so it “looked like” we tried to open it “without authorization” (grandpa).

The person behind the screen who checked us in is severely confused, she explains that she is just an intern and has no idea how to now get the door open. She repeatedly tries to buzz us in by pushing a button in her booth but nothing.

She then tries to call a supervisor but can’t get ahold of anyone for the longest time.

She looks slightly panicked as a line of anxious parents waiting to see their little ones form behind us…

I am sitting there in the wheelchair, slightly embarrassed while my father in law is not sure what is going on and my mother in law happily chatters away.

Finally, somehow the door gets open (luckily because I think people were starting to get annoyed). My mother in law lets her husband roll me in first since only one person besides the parent is allowed at a time.

My baby has “graduated” to a different bed (eh, she stopped breathing last night but okay…), nr 13 (hmm) because she had such a good morning (yay) except her jaundice is up from a 4 to a ten and she did loose some weight, which is normal but I completely blame myself; stupid milk production (or lack thereof). My father in law (despite having to take both the flu and the whooping cough shot to be able to “interact” with the baby) declines to hold her, “oh no she is way too little”. I can’t say I blame him, with all the cords hanging from the little preemie’s body she looks impossibly tiny and fragile.

My mother in law though is excited to hold her brand new grandchild. I understand that all everyone else sees is an adorable healthy looking (albeit very yellow) little baby (at now almost 5 lbs she is considered “big” for a 34 “weeker”) but all I can think about is the apnea.

There are obviously more problems with being a preemie than weight, but people unknowingly just look at their size.

Yet again the thought strikes me that “what if I was somehow misdiagnosed and this is the outcome”, they took her out too early when they really didn’t need to, and now my baby is suffering…

It’s really terrifying me and nobody told me it would be like this after she was born. But logically I know I wasn’t misdiagnosed and logically I know my baby is doing quite well- even with her weight drop (to a scary 4.4 lbs) and that we are very lucky and blessed!

I still worry though…

I worry about taking her home and not being able to take care of her and how I would freak out if she had breathing problems under my watch or worse…stopped.

That night I’m feeling better and am hanging out in the NICU with my precious baby. I ask a lot of questions about the monitor and what everything means.

I ask about Madeleine’s homecoming and how to take care of her. The night nurse is a chatty Kathy (literally, her name is Kathy) and she tells me everything I want to know, how I should totally isolate my baby for at least 4 weeks once she is released (only get out for doctor’s visits), continue to check her temperature and her weight, count her diapers, make sure she is eating. She also needs an adult to be in the car with her, holding her chin up and make sure she is breathing and only take her on short, necessary car rides (if it can be avoided she shouldn’t be in the car for longer than 20 minutes).

Nobody should visit and if family absolutely has too, limit it to close family that have not been sick or been around illness for at least 72 hours. Everyone around the baby should religiously wash their hands and we have to be careful with my son and dog. Any infection is extremely dangerous, could even be fatal and is a sure ticket back into the NICU. We should carefully monitor her and continue the 22 calorie formula powder in her breast milk as well as the vitamin D drops.

Even though none of the nurses recommend the alarm because parent gets so worried and frantic (“you should watch your baby not monitors” and “you should rely on your instincts not alarms”), this nurse recommends a simple alarm that records movement that you clip on to baby’s diaper. It is also important to remember that just because the baby has reached full term (or 40 weeks) she will not magically be okay, development and maturity can be slowed down the first two years of the baby’s life and beyond. She tells me that my baby won’t go home anytime soon though; she still has blood work to wait for, antibiotics to run through her system, jaundice to get better and lungs, immune system and digestive system to mature and develop.

Besides, any time they have an apnea episodes, five more days are added before the babies are allowed to go home.

The next morning the doctor stops by (my doctor always comes by super early). She is concerned about the pain I experience when she presses on my belly, the fever and that I am still bleeding so much. She tells me that she will recommend that I will stay another day or two.

The baby’s aunt and uncle come by later on after having picked up their daughter at the airport. I appreciate how nice they are and how they really seem to listen to what we have been going through.

A lactation nurse comes by; she is definitely the kooky kind (but I do take “kooky” over “the milk Nazi kind” any day). “You are supposed to get at least 75 ml of milk at each pumping by now” (eh, okay, so I don’t, not even close, who are we supposed to blame here, my body, nature, biology…my boobs?)

My brother in law comes in after auntie has stayed with the baby and me through the lactation session, and he gets a little misty eyed as he sees the baby snuggled in my arms. He offers to take my son out on a fun adventure one day next week during their Easter break which I really appreciate.

After the hugs goodbye I am feeling better about things, I get to stay another couple of nights to be close to my baby, she is doing better, they take really good care of her here and they won’t release her-or me- until we both are okay, but when I reach my room, I’m in for another surprise!

 

 

 

 

 

Apnea in preemies 😥👶🏼♥️

Apnea is forgetting to breathe and sounds incredibly scary, breathing is what keeps you alive and if you stop, well then you are not alive…

The goal when a preemie forgets to breathe is of course to “remind” them by first hoping they will “remember” (resume breathing) on their own but if they don’t, you have to intervene.

You pick them up, gently shake them (no shaken baby syndrome here, because we all know; you should never ever EVER shake your baby), pat their back rather forcefully and stimulate their extremities (meaning rubbing their arms and legs) and tapping their feet.

If they don’t resume breathing right away after this, oxygen masks are needed and of course if you are home with the baby you need to start CPR and call 911 right away (how horrifying is this?).

In the NICU, they have the monitors on the babies at all times of course and it may seem like the nurses ignore almost every alarm but it’s not because they are oblivious or trying to let your baby die, I quickly learn, it’s because once an alarm goes off the babies regulate their own breathing soon after…in most cases.

It’s when they DON’T and the nurses need to intervene that they call it apnea, an apnea attack, true or strong apnea and this goes down in the reports as an “episode” or if the heart slows down to a dangerously low rate, “an event”.

The real diagnosis is called “Apnea of Prematurity” (AOP) and is quite common in premature babies (especially babies born before week 36).

Apnea means that these babies have immature lungs and the part of the central nervous system controlling breathing is not mature enough to let them continuously breathe on their own.

Preemies with apnea don’t get enough oxygen because they can’t continuously breathe, instead they breathe heavily, audibly and rapidly for a while, followed by very shallow breathing and sometimes they stop breathing all together.

In the NICU, the monitors check on the baby’s oxygen level and intake and the baby’s breathing and heart rate. They also monitor the baby’s ability to regulate his or her body temperature and keep an eye on jaundice.

Our baby has been under heat lamps for body temperature regulation and is also being treated for jaundice. She is getting antibiotics in her IV and they continuously check her blood.

Apnea is diagnosed when baby has an episode of stopped breathing after birth and medical professional usually define the condition as stopped breathing for 15 to 20 seconds.

When baby’s heart rate drops below 80 beats per minute after he or she stops breathing, they become blue and pale, this event is called bradycardia or a “brady”.

Apnea and bradys are carefully monitored in the NICU at the hospital where we are. When baby’s monitor indicates that his or her heart rate falls below 80, an alarm will sound. More often than not, the babies will resume breathing on their own and their hear rate will go back up.

This is WHY it might seem like the nurses ignore most alarms which might frighten, worry and frustrate new moms of preemies (or send them into a panic frenzy…). You learn after a while that you can help your baby by picking them up, sitting them upright with a straight spine and patting their back and when heart rate goes up gently massaging their back in circular motions until the baby (and you) resumes breathing normally.

Knowing what to do does not completely take away the panic you feel when nobody comes running to “fix” your baby when the alarm shrieks, especially if the heart rate does not go up right away on the monitor, but it might ease your worries slightly and it does get better with time.

Better but far from good, when that alarm attached to your baby sounds, I don’t care who you are, you get scared.

This night after the phone call from the NICU about my baby’s apnea episode, I feel utterly powerless and yes, scared. I thought she was okay, I thought she was doing fine. I thought they all joked about how good she was doing and her “not knowing” she was a preemie and that I had miscalculated her due date because she was so big and healthy looking.

When why did she stop breathing, unable to resume breathing on her own without intervention?

As I rush towards the big metal hospital elevators (without my wheelchair) to try to get to my baby girl (even though there is little I can do to actually help her) a nurse comes running after me. She tells me that I am still not allowed to go down to the NICU under any circumstances.

Why?…

 

 

 

 

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