Tuesday, September 30, 2014

NICU Day 9

Today was my first day back at work.  It went well, though I'm not sure how I'm going to balance work, home and hospital.  I got to the hospital just before 5pm and didn't leave until right at 8.

Today's hospital visit was pretty intense.  I got to change her diaper and take her temperature as well as the Kangaroo Care for about an hour.  Previously, I'd been treating Kanagroo care as something that was done on me, where I'd hold still, they'd place her on me and then I'd just hold REALLY still while they adjusted her as needed.  Today, they had me re-positioning her myself.  She's very tiny and I find touching her and manipulating her daunting.  I clearly stated my concerns with being left alone with Baby Girl and Rhonda was really awesome about it.  She was careful to make sure I knew I could get help, they made sure I had a call button I could push and she made sure I wasn't left alone when the alarms went off.  Baby Girl had a couple brady spells and some apnea spells during our time together, but overall, they said it went very well.  Also, she had a really big poop... which may have been at least some of her bradys etc.

Height: 13 inches (33 cm)
Weight: up 10 grams!
Pump Total: 611ml - 20.36 oz
feedings bumped to 7 ml
CPAP 5 - 21% - 27%
Kangaroo Care - 1 hour
Dr Carr called with an update
Phototherapy is on
Day Nurse: Rhonda
Night Nurse: Megan

Monday, September 29, 2014

NICU Day 8

The news of the day is Riley's left eye has opened.   She's started forgetting to breathe a little more often, they may need to bump her CPAP a bit.

I thought I might have a hint of a sore throat this morning, so I did not go visit.  Tomorrow, I'm planning to at least pick up more bottles and labels (If I'm still not displaying any symptoms of illness).  I plan to be at work tomorrow.  I have a meeting at 9am, wish me luck with that.

Height: 12 3/4 inches (32.385)
Weight: 1lb 10oz (still)
Pump Total: 560ml - 18.6 oz
feedings bumped to 5 ml, 6ml in the morning
CPAP 5 - 21% or so O2 - 12 alarms or so in 24, with 3 interventions (as of 10am or so)
Dr Carr called with an update
Phototherapy is off
Day Nurse: Lori
Night Nurse: Megan

Sunday, September 28, 2014

NICU Day 7

I started getting around early this morning with the hopes of being at the hospital by 11.  I wanted to get a flu shot today as I'd finally found an option with the quadrivalent, preservative free shot - If you want the better coverage of a 4 virus shot, go to Walgreens and ask for it by name :)

Unfortunately, there was some paper work issues getting my flu shot setup, so it took just this side of forever for me to actually get the shot.

I finally made it to the NICU about 11:45.  It seems like her nurse is never there when I get in the room.  I'm so used to one on one nursing care, that it is disconcerting to have such an absence in that environment. She was desatting a bit when I arrived, she does that a lot... it scares me.  I was relieved when her nurse arrived to help.

I got to meet her nurse, Rachel and she was very nice.  I wore a mask again and I think she might think I'm crazy.  I'm going to stop bringing milk in and start storing it here. I've created a lot of little bottles.  On an up note, her next feeding she's up to 3ml, so they are beginning to ramp her up to her "full feed" of 14 ml every 3 hours (if I remember right).  They are going to fortify my breastmilk with human milk fortifier (a type of formula).  I'm working hard to be OK with that.  This is the reason formula was invented.  She'll need the extra nutrients... This isn't what I dreamed, but it is what I have to work with.

I pumped enough fresh to last for a little while and a bit more went into the freezer.    Then I got to hold her for a couple of hours.  By which I mean she was carefully and quickly arranged on my bareskin, braced in place and covered with a couple of warm towels.  I then sit very still and shift between trying not to bother her and reciting children's stories.  Every once in a while, she high sats, which gets her oxygen turned down (yay!) then, occasionally, she also desats, and sometimes tosses in bradycardia.  Watching all the numbers drop is terrifying.  The fact that it is no big deal to the nurses is also terrifying.  I'm watching my baby's oxygen drop and no one comes running. Then I'm sitting there, alone and her heart starts dropping too... it is terrifying.  I wonder if it is too early for Kangaroo care.  There has to be a less scary way to do this...

Right at the end, before we put her back in her incubator, she started crying.  She's a loud, loud tiny girl.  She wanted everyone to know she wasn't happy.  We got her snuggled back into her space lying on her side, which seemed to help.

On an up note, I get a FLOOD of feel good hormones while I'm snuggled up with her.  It is amazing. So far, I've crashed back down off of those hormones a few hours later, which is pretty painful.

The doctor/NP who saw Baby Girl never did call with an update today.

Height: 12 3/4 inches (32.385)
Weight: 1lb 9oz (down 1 oz) 708.73 grams
Pump Total: 513 ml (17.1 oz)
feedings bumped to 3ml, the second to the last 2ml feeding had a .4 residual, not bad...
Pooped at 8pm-ish
Kangaroo Care - 1.5 hours
CPAP 5 - 24% or so O2
Acidity stable
Phototherapy is off
Day Nurse: Rachel
Night Nurse: Megan

I miss her inside me...

I had months of bonding ahead of me.  I loved playing with her as she rolled, kicked and pushed.  I was so grateful to be having a pregnancy where I didn't have to fear delivery, until I did... Now I miss her.  All the time.  I waver between anger and sadness.  I get so tired.  I'm desperate for control and terrified of germs I can't see.  I know the other shoe is going to drop, I don't know how or when, but it is coming.  I don't know how bad it will hurt and that scares me.

I miss my husband and my son.  I'm camped out in the living room, listening to them laugh and love while I sit and pump.  Terrified of the virus they are currently carrying.

I've done Kangaroo Care twice. It is an amazing and terrifying feeling to have something so small entrusted to your care.  When she's laying on my chest and her O2 sats climb until she has to be on room air, I'm over the moon. When she's lying on my chest and she desats and goes bradycardic it is terrifying.  I'm alone, in a room, unable to move and my child is lying on my chest with alarms blaring that her heart is decelerating.  When she comes back, I can breathe again.

My heart healthy kid isn't what I expected. On Wednesday of last week, we had our fetal echo and got confirmation that at 24 weeks and 3 days pregnant, everything was looking good, except... my amniotic fluid was a little low. On Friday, I started cramping and they said it was indigestion, on Saturday, they said I had a yeast infection, on Sunday night, they agreed I was in labor, started magnesium and gave me a steroid shot. 3 hours later, I gave birth to a beautiful 25 week micro preemie. I go back to work tomorrow. She'll be in the hospital until at least January... I wished I had a crystal ball when my son was born... It never arrived... I still need it, if anyone has a spare.

Saturday, September 27, 2014

NICU Day 6

I didn't go visit today.  Which was rough in one way, but less anxiety inducing as well.  I've rested a bit, I ended up getting 2 3 hour blocks of sleep last night when I pumped a half hour early at one point and an hour late at another.  I still pumped in the windows research has shown to be most productive, but that solid stretch of sleep was incredibly beneficial.  I've added in a few pumps today to simulate a bit of a growth spurt.

Baby Girl has been doing well at both my check ins so far.  I gave his nurse a bit of a laugh when I explained my severe angst over germs.  I'm more than ready for my hormones to get back under control so this anxiety settles down a bit.  Acknowledging that these overwhelming feelings are actually anxiety related rather than reality related has been helping.  As has the group over on the Facebook Micro Preemie board.  I'm already finding them a fantastic resource.

Baby Girl continues to do amusing and surprising things. Apparently they do oral care several times a day where they put breast milk on a cotton swab and wipe her mouth to moisturize and make her feel better.  When Janice swabbed her mouth this morning she started sucking on the swab, she REALLY likes my milk :)

I'm feeling more stable today.  I am grieving the loss of the pregnancy I wanted and furious that my daughter has to go through this.  But my anxiety has ramped back down a bit, which is good.  I finally found the quadrivalent flu shot and I'll be getting that tomorrow (Walgreens has it).

Height: 12 3/4 inches (32.385)
Pump Total: 477 ml (15.9 oz)
feedings steady at 2ml every 3 hours - no residuals between feeds
CPAP 5 - 24% O2
Acidity has improved
Phototherapy is off
Dr Murthy called with my update
Day Nurse: Janice (pronounced Jan-eece)
Night Nurse: Heather!

Friday, September 26, 2014

NICU Day 5

After much debate and angsting over whether or not I was secretly sick or soon to be sick, I did go ahead and do Kangaroo care today.  Baby Girl and I spent an hour and a half quietly resting together.  I can't even express how much I miss having her inside me.  She was on 26% O2 at the time and she started high satting and had to go back down to room air (which means she liked it).  She snuggled down, ate her 2ml of fresh breast milk (I had pumped right before) and went to sleep.  She was a super happy girl.  While she received her breast milk, she sucked on her OG tube, Rachel said this was called cueing and is another special thing Baby Girl is doing.

Of course, on the way home, I started thinking maybe, I might feel some drainage.  By the time I got home, I'd worked myself into a state, and then when one more thing happened (someone sneezed or something) I totally freaked out and had a panic attack... fun times.  My nose is tingling, so I fear I may in fact have a cold.  I will probably skip visiting the NICU tomorrow.  

I'm holding onto the fact that I wore a mask and that she's taking a fresh batch of breast milk and hoping desperately that she doesn't get sick.

Height: 12 3/4 inches (32.385)
Weight: 1lb 10 oz (737 grams) down 20 grams from yesterday
(she'd actually gained 100 g yesterday and lost 20 today, which is still pretty awesome)

Pump Total: 426 ml (14.2 oz)
feedings steady at 2ml every 3 hours - no residuals between feeds
Kangaroo Care - 1.5 hours
May be off phototherapy tomorrow.  Bilirubin just over 2
CPAP 5, Back down on room air (21% O2)
PICC Line In
Night: Heather
Day: Rachel B

Thursday, September 25, 2014

NICU Day 4

Now that I'm home, I'll mostly be getting details through my update phone call sometime in the morning.  Today, Dr. Lizzazi called this morning with our update.  Baby Girl continues to do well with just the CPAP and room air, for the most part.  She's had 2 Brady incidents in the last 24 hours, but she's recovered from them on her own.  Her Bilirubin is back up to 4, so she's back on photo therapy, probably for a couple of days.  Her aciditiy is still higher, so they are adding additional buffers into her TPN to assist with that.  She lost some more weight overnight, so they are adjusting fluids for that as well.  They are going to bump her feeds up to 2ml every 3 hours instead of 2ml every 6 hours.

I'm almost positive Husband has a cold, in addition to C .  I slept on the couch last night, and I'm hoping to ward it off.  Just in case, I brought up the 14 - 16 half ounce bottles of milk I have today.  I pre-portioned them into half ounce sizes so we'll have less risk of waste with them.

I wore a mask when I went to NICU, just in case.  I bought some for home as well, so that we can wear them while working with the pump parts or if I want to be around Charlie while he's sick.

Evening Report from Heather:

Height: 12 3/4 inches (32.385)
Weight: will be double checked later tonight, it seemed high
Pump Total: 325 ml, 10.91 oz
Increasing feedings to 2ml every 3 hours
Back on phototherapy for a couple of days
CPAP 5, Back down on room air (21% O2)
PICC Line In
Peripheral IV Out and Umbilicus Art Line Out
Night: Heather
Day: Rachel B

Wednesday, September 24, 2014

NICU Day 3

Baby girl continues to hold her own.  She had an hour today where she needed 29% oxygen support.  Otherwise, this was a very quiet night and day for her.  Her Bilirubin dropped enough that they took her back off phototherapy for a bit and she seemed to enjoy resting in the dark and quiet.

Things were a bit rougher for me.  I was discharged around 2 and had to leave the hospital without my baby.  Leaving was very tough.  I've been on an emotional roller coaster ever since.  There was a slightly surreal moment as we were getting ready to leave.  We were standing in her room talking to the nurse and someone just outside the door came to an abrupt stop.  I looked up and there stood our son's cardiologist.  I think we gave him a moment of severe cognitive dissonance.  He just couldn't place why we were there, it was outside his expectations.  He recovered quickly and we exchanged pleasantries, but it was strange for both of us.

We left late enough that we had just enough time to stop by Whole Foods to lay in my supply of oatmeal (galactagogue!) before going to pick up C.  C got into the car and was already talking about how he had to sleep at the hospital the other night and now the baby is out.  He asked where the baby is and I explained that she's sick and has to stay with the doctors.  He seemed OK with this, it does make sense in his world, we see a lot of doctors.  He then asked what her name was, we told him again and he had a little melt down over thinking it should change to a different name, I don't know why and he couldn't explain it, but eventually he settled down.

The Husband and C both seem to have a cold.  This has given me something new to obsess over.  Husband didn't touch baby girl and he wore a mask when he was in the room last time.  The symptoms really just started this afternoon.  But I'm still VERY concerned, desperately hoping not to get sick and planning to sleep on the couch.

Spoke with Darrin at about 1am and Baby girl is doing fine.  She'll desat and they bump her O2 up to 24-25% then they wean her back down onto room air again.

Day Nurse: Cassie
Night Nurse: Darrin
Height: 12 3/4 inches (32.385)
Weight: 1.47 lbs (670 Grams - down 20)
Pump Total: 148.5 ml in 8 pumps - 4.95 oz
Feeding rate: 2 milliliters every 6 hours.

Tuesday, September 23, 2014

NICU day 2

I am more comfortable today in that very scary and highly medical NICU.  I'm able to ask to enter without sobbing as I did on day 1.  I attended morning rounds today.  The NP who was giving the information said "In this room we have a little rock star".  My girl is a respiratory rock star.  She's spent today on CPAP.  I talked to the doctor who saw her today, she told me that this may not last, sometimes these kids just get too tired and go back to needing more help.  She desats a couple of times an hour right now.  Mostly, she realizes it herself and starts back up, sometimes they have to stimulate her to get her breathing again.

I am able to bring more milk today, my production is almost to 1.5 ml per pump.  She's eaten twice, all my milk that I gave.  She pooped too.  I'm back to a world where eating and pooping are VERY exciting.  I'm thrilled I can provide her milk.  I'm even more thrilled she can take what I give.

The doctor tells me there will be good days and bad, I know it.  I spend my time trying not to imagine which bad days we will get, My husband reminds me often that when the bad days hit, we'll have to worry about them, this is a good day and we should enjoy it.  I try not to be choked with fear of the future.

I'm grateful for all the people thinking of us, praying for us and sending all the positive vibes they can.  This will be a long road.

I decided to go back to work next Monday.  I'm saving up all the time I possibly can for when we can room in and when she comes home. I may have to reassess if the hormones get the better of me, but really, physically, I'm feeling amazing.  I may not grow them right or cook them right, but I apparently can recover quickly.

I made a trip to see her every time I pumped, so far I've seen her 7 times.  I got to use hand containment twice to help calm her down.  We try not to touch her very much, it is very hard on her to have that stimulation, they call this therapeutic neglect. It is very hard. She's very awake for her age.

I imagined a work week schedule that had me coming to the NICU before morning rush hour and staying until 9:30 when rounds ended in the hopes of doing kangaroo care.  Then, I'd go to work until about 11:30 and come to the NICU for lunch and do another round.  Finally, I'd come after work for a last time, then go home to see the rest of the family.  All the while, I imagined pumping at 3,6,9 and 12 (am and pm).  The NICU nurse told me I wasn't being realistic, she described how most people handled it.  She assures me I'll find the balance that works for me.

I keep hearing T's voice repeating what he learned at Pre-K - You get what you get, don't throw a fit.

Height: 12 3/4 inches (32.385)
Weight: 1 lb 8 oz (5216.31)
Pump Total: 11.5 ml (9 pumps)
First breast milk by OG tube, 2 millileters at noon.  She pooped!

NICU day 1

Everyone keeps asking us "What's your baby's name?".  The thing is, we don't know.  We'd been kicking around ideas, but we thought we had all the time in the world.  Time's up, we need to figure this out.  While we wrestle with that dilemma, our baby girl is getting settled.  25 weeks, 2 days.  1 lbs 11 oz.  12 3/4 inches long.  Tiny little dream, hoping she's super strong.  We settle on a name that means Valiant and Courageous, she'll need everything we can give in the coming months.  They tell us to expect this to be a long and rocky journey.  She'll be in care probably beyond her due date, 9 days of September, 31 days in October, 30 days in November, 31 days in December, before even getting to January, we'll be over 100 days in NICU.

As we went from L&D to the Mommy and baby floor, we had a chance to stop by the NICU to see our baby girl.  I begged to take a picture with my phone.  I saw the nurse's eyes go wide.  I realized this must be one of the areas where cell phone use is prohibited.  I freaked out and told my husband to put the phones in airplane mode.  The nurse said if it rings, some of the ventilators will turn off.  I panicked inside. My husband handed me his phone, I frantically changed it to airplane mode.  I ordered him to find my phone and do the same.  Then I focused on getting a picture.  I carefully turned the flash off and snapped 1 picture.  She was so small and terrifying.  We hadn't washed up coming in, I was terrified we were going to make her sick.  I asked to leave so we could keep her safe.

We make brief visits over the day and we're told she's doing amazingly well from a respiratory standpoint.  She is breathing over the vent and doing a lot of the work herself.

Later, a nurse practitioner came by and told us that she was doing amazing things from a respiratory standpoint.  They decided to extubate her and switch her to something called [letters I can't possibly remember as overwhelmed as I was]. Later, my mother in law is able to guess the acronym and tell me what it means, she's a respiratory therapist and super smart in these things.  She went from the vent to non invasive positive pressure ventilation (NIPPV).

When I went to visit her for the last time at around 9:30, they told me she was rocking that as well.  Her blood gasses were excellent and by morning, they expected her to be on CPAP. They assured me I could call and check on her whenever I wanted overnight.  I called every time I pumped.

Height: 12 3/4 inches (32.385)
Weight: 1 lb 11oz (5301.36)
Pump Total: 1 ml (8 pumps)

Birth Story, 25 weeks, 2 days -- Darn it. (very long and graphic)

Hello!  This page has been getting quite a few page hits, so I wanted to add a note.  If you or someone you know has just had a 25 weeker, Congratulations, a baby is always a cause for celebration.  Also, I'm sorry you are facing such a scary beginning.  If you are on bed rest and searching for solace, I hope you find it here.  Every day your baby is inside you decreases a NICU stay by 3 days on average.  For anyone working on establishing milk supply with a pump, I did that with both of my pregnancies, you can read more about how here

Well, I had decided to post that I was pregnant yesterday because I was really afraid I was going to end up I had a baby before people even knew I was pregnant.  Ends up, I wasn't wrong.  I'd promised myself I'd announce after the anatomy scan, then after the echo and each time, I found a reason not to.  I didn't post after the anatomy scan because I was afraid if I said it, it would stop being true and I'd lose the baby. Then, when we had her fetal echo last Wednesday, we discovered my fluid was low.  My cervix was still closed and OK, she looked great, her heart anatomy (and everything else) is great. All the pieces and parts right where they belong.   Her growth measured on target at that point and her cord doppler looked fine.  We decided to check me for a leak because the fluid was "low normal (5)).

After getting checked, we found no signs of a leak, and my cervix was closed, so everyone moved on.  Friday afternoon, I started to experience what I thought might be contractions.  I called the on call doctor and she said she thought it was bowel related (because I'd had several bowel movements that day) and referring to my uterus and therefore not a concern. I did mention that they were timeable, peaked and caused pressure in my groin area, which were all concerns.  The increased bowel movements could also be signs of preterm labor, but she really thought that this was just bowel issues. I continued to experience the contraction like sensation all day Saturday and Saturday afternoon, I called the on call again and it was Dr. P.

Now, every time I talk to Dr. P, things end up happening.  He isn't actually my doctor, however, he performed my C-Section, managed my miscarriage over the phone, handled the second trimester bleeding episode I'd experienced with this pregnancy and now, here we were again.  Dr. P sent me to Labor and Delivery, where they assessed me.  They couldn't see the contractions on the monitor, and when they checked me, I didn't have any cervical changes.  They decided not to run a Fetal Fibronectin test (after they collected the sample) because I hadn't had any cervical changes.  I thought about pushing back, and chose to let it go... I can't change that now, but I'm having a lot of trouble not regretting it in hindsight.  Again I reiterated I was able to time the contractions, they caused pressure. My nurse said that it was probably because they asked me to lay on my back for monitoring.

They discovered a yeast infection (no symptoms, but they saw yeast on the mount) and gave me diflucan to treat for it and sent me home.  I continued to have the cramping sensation they said was most likely caused by the yeast infection all night, it woke me several times.  Sunday evening, I started timing the contractions again.  They were VERY regular and it didn't make sense that cramps from my intestines or otherwise would be so regular.  Even knowing they said that yeast infections can cause harmless contractions, I began to worry.  Then I started having contractions so painful I couldn't talk through them.  I called the on call line at 11:00 pm, and Dr. P was still "the guy".  

I told him I couldn't talk, that I was scared, but I didn't want to drag my kid out in the night, or waste everyone's time for a third night if this really was nothing.  He said that the only thing we can do is check again.  We grabbed C and a blanket and headed out.  The drive was much faster without traffic.  I sat in the passenger seat and tried to memorize the contraction start times and duration as we drove.  11:07 - 1 minute, 11:15 - 1 minute, 11:24 - 1 minute, 11:32 - 1 minute... we arrived at the hospital.  I made the same jokes, and said the same things about hoping this was a false alarm as last time.  They asked for a sample, I had to wait until a contraction passed to answer.  I gave my urine sample (pregnancy professionals have a serious obsession with urine) and went into the triage room (my usual, room 4 -- I once was in 5, but for the remaining 3 previous visits, I was in 4).  I laid down, this time, I was told I could lay down on my left side.

I told the nurse I really thought they were contractions, even though they weren't showing up on the Toco (external contraction monitory thingie), she replied "If you say you are having contractions, you are having them, I believe you, I don't need a machine".  She stayed in the room most of the time.  She only left if she had to.  She explained she was the charge nurse, and sometimes everyone needed her at once.  She asked a bunch of questions that hadn't been asked before, after the fact, I realized they were the admitting questions.  The resident was in a C-Section and hadn't been able to come evaluate me yet, she'd decided to ask those questions based solely on her interaction with me.  She remains one of the high points of what was a very scary night.

When the resident came to examine me at around 1 in the morning, she looked inside and thought she'd find that I was still closed.  Unfortunately, when she did her physical exam, she found instead that I was open.  They had said I was open less than a fingertip before and that it was common in women who'd been pregnant. I asked if that is what she meant, she said "No, you are 2.5 cm and I can feel your baby's head".  They admitted me immediately.  I got in a wheelchair and they took me up to a room in Labor and Delivery.  They suggested I go to the bathroom before I get into bed as I wouldn't be getting up again for a very long time.  I went to the bathroom and there was a lot of blood.  The Triage Charge nurse and my L&D Nurse worked very quickly to get IV access and start a magnesium bolus.  While my L&D Nurse started that line, the Triage Charge Nurse gave me a steroid shot in my leg. The mag gave me an incredible hot flash and I started to feel somewhat less than 100%.  I also became desperately thirsty.  They told me the purpose of the magnesium was two fold.  First and foremost, we were hoping it would stop labor.  If it couldn't, it would help protect my baby's brain.  I continued to have contractions and I begged the nurse to tell me how fast the magnesium would work.  With each contraction I'd cry "Why isn't it working? Why won't they stop".  I asked them to tell me when I should give up on it working, they told me that we were getting to a theraputic dose and not to give up hope.   I asked if I should call family, or if I could wait this out.

I asked to try and use a bedpan, but sitting on it made me feel like I needed to have a bowel movement, and I knew she was coming.  Dr. P came and I asked him to check me, it was around 2:15 am, and he found me dilated to 5.  At this point, I knew we had to get someone to come get C.  My husband worked hard to keep him distracted until my in-laws could arrive and take him home.  I'm sure it was scary and disorienting for them when I called them and begged them to come get C.  I was not exactly coherent due to the mag drip and I was pretty upset.  They came at around 3 and took C with them.  I tried to talk to them, but the contractions were coming quickly and I couldn't really think of what to say.  After C left, I made my husband come stand beside me anytime the L&D Nurse left the room.  I'd make him pet my hand, then a contraction would start and I'd demand he "Stop touching me and start reminding me to breathe!"  He'd say "Breathe" and I'd say "NO! remind me when I stop breathing, not now!" Poor man... it was very chaotic.

The NICU Nurse practitioner came up to talk to me, at my L&D Nurse's suggestion and my request.  She asked me if I'd had any medication for my anxiety and I said no, of course not, I may have a baby tonight and she needed to be as med free as possible.  She told me she didn't think that would matter. She calmly explained that at this gestational age, without steroids, my daughter would most certainly need a vent anyway.  I asked her to go ahead and start the orientation.  She said nothing I am going to say is going to help your anxiety.  I agreed that was true, and asked her to provide the details anyway.

She explained that my daughter would almost certainly be on a ventilator.  That any baby who spends more than 28 days (?) on a vent will most likely have chronic lung disease and it will be years before they "out grow" it.  That they way they outgrow it is by the natural process of replacing all those cells with new cells that weren't on a vent and it could take years.

She explained about Retinopathy, I remember it is bad, I remember they have ophthalmologists from Children's Mercy come and check the kids out... that's about it.

She explained about the potential for a PFO or a PDA (both heart related), I told her I got that one and she can skip it...

She explained about NEC.  I know it is a risk, I knew that before from reading something or other, somewhere... I'm scared of it, but, we're doing 100% breastmilk, so hopefully that will help.

She explained about brain bleeds.

She explained I'd give birth in an OR room because they had more specialized equipment for the NICU team to work with there.

I kept having to ask her to stop while I had contractions, she didn't stop talking, so I missed a lot of the detail as the pain rolled over me and I tried to breathe and listen to all the things my body was about to allow to happen to my baby.  Inside I was still desperately hoping the mag would start working.

The L&D Nurse came in and asked if I wanted an epidural.  All I could think was that I'd heard an epidural sometimes stalls labor.  I said yes, I want that.  I asked if it would hurt the baby, they assured me it wouldn't.  I thought it might work, I might as well try.  She left the room to call for anesthesia.  A few minutes later she returned and told me (or Dr. P? I don't know) that she'd called for the epidural.

The pain came in waves, I couldn't work my head around trying to treat it as information, or to work with it instead of against it.  All I could think, with every contraction, was we were one step closer to a micro preemie and one step further from the 48 hours of steroids I so desperately wanted on board.  I couldn't bring myself to change to any of the positions that would allow her to come faster, I just wanted her to stay.

My L&D Nurse came back into the room and told me anesthesia would be here soon. I half-cried "It's too late, we need to go to the OR now, she's coming!" I kept repeating "she's coming, she's coming".  My L&D Nurse said, I believe you, we're going to move now!  She called Dr. P on the way and they rushed me straight to the OR, while I continued to say, "she's coming, she's coming".

In the OR, they converted my bed to that strange contraption with the leg stirrups and stuck my legs in.  All I could think was this isn't how I wanted to push... I don't have my doula, this isn't the birth I wanted.  I looked over, and there was one NICU nurse rushing into the room.  Dr P said "I see the baby", I said, "I feel like I'm going to poop!"  He said "No, that's the baby". He turned to the NICU team, who were entering the room and said "Are you ready?"  They said no, he told me not to push, I tried very hard to follow that request.

Finally, they said I could push with the next contraction, so I did.  I pushed twice, and out she came.  I think I said it hurt, I know I asked if I tore.  I didn't tear.  I heard him ask if they wanted him to delay cord clamping so baby would have more blood, they said yes, I felt relieved.  I asked if they were going to bathe her, because I really didn't want her to have a bath.  Research shows the vernix on her skin will help protect her from bacteria in the NICU.  They assured me they do not ever bathe babies this small.  I felt relieved.

I heard my baby girl cry several times, I saw them working on her quickly and competently.  I felt Dr. P applying traction to the cord.  I thought about asking him to stop, but the cord came off.  I began to hemorrhage.  I knew this was bad.  Dr. P was pushing on my stomach, reaching inside me, trying to grab the placenta and get it to detach.  My uterus was clamped down around it, tight as it could.  I heard someone ask about Nitro, I heard them discuss a D&C. I knew I was bleeding.  They'd finished getting the baby ready to go to the NICU.  Earlier someone had said my husband could go with them and come back to check on me.  I asked if that was still a good idea, Dr. P said no, he needs to stay here.  I knew I was still hemorrhaging and he was concerned. Anesthesia came in and we started dealing with the spinal.  In an amusing echo of my previous labor experience, I asked, so, should I sign a consent form?  They agreed that was a good idea and scrambled to find a pen.  I signed, and sat over the edge of the bed.  They began the work to put in an epidural spinal combination because they thought the D&C might take more than an hour and I'd emphatically stated I did NOT want general anesthesia.

As my legs started to go numb, the contractions started ramping back up.  I felt a gush, I told my nurse she should get back, I didn't want to ruin her clothes and "stuff was coming out of me".  The contractions became more intense and I said "I need to push again, can I lay down?" They said not yet, I said then I'll have to push it out sitting up, and I did.  The anesthesiologist also chose to believe what I said, she stopped pushing the spinal meds.  They finished taping down the catheter into my spine and allowed me to sit back onto the table.  As soon as I'd leaned back to give it room, the placenta emerged onto the table.  The anesthesiologist assured me she'd only given me a half dose and my legs would be mine again within half an hour.

Dr. P came back in the room to do the D&C, and they told him I'd passed the placenta.  He looked it over and then checked me out.  I could feel him doing strange and uncomfortable things, lots of pressure, but no pain. My bleeding was under control, I could go back to my room.  We got me cleaned up as much as possible in the OR, then took me back to my room.  It was about 5:30 in the morning.  I slept until shift change and then they cleaned me up and moved me to the mother and baby floor.

On the Mother and Baby floor, I finally had the first opportunity to pump.  Because pumping had been such an integral and constant companion during my first pregnancy, it was a huge comfort and provided me a sense of normalcy in this incredibly chaotic experience.  I counted in my head, I started pumping within 6 hours of my daughter's birth, I felt relief.

Sunday, September 21, 2014

Long time, no update... Maybe some news...

It's been a long time.  I've actually written and discarded several blog posts.  I've been reticent to share all, so I haven't been sharing at all.

First, an update on C.  He's been doing well.  Nothing really exciting on the cardiac front.  His heart rate can still run low at times (like when he had his EKG last month).  We're going to do another Holter Monitor in winter, which will have more clothes available and therefore makes him less likely to rip the leads off and throw them at our head!

C, continues to progress in milestones in his way and his pace.  Sometimes that pace is very, very fast (academically) and sometimes, not so much (socially, athletically).  We're really pretty OK with that.  It makes for some interesting experiences though.  I've got a 4 year old who doesn't respond to social cues and isn't potty trained who can recite the multiplication tables up to 12x12 and enjoys playing prime/not prime.  Storybots is our favorite short TV show (used to reward potty successes among other things) and Umizoomi has the win for long TV shows.

We took C to get his eyes examined at the request of genetics (genetics came back normal, so heart defect is assumed to be a fluke at this time).  His eyes are great too :)  When we arrived, the nurse offered to let him watch a show, she put on toy story.  I asked if she had anything more educational.  I think she thought I didn't WANT him to watch something that wasn't educational, but really, he just wasn't going to watch it if it didn't have a point he cared about.  She kind of rolled her eyes and said he'd be fine watching this.  Three minutes later, he asked if there was something else he could watch.  I suggested that if she didn't have something academic available, the letter chart for eyes would work as something entertaining.  As a bonus, they can put those charts on rotation!  He happily called out letters and numbers as they appeared across the room.  He really is easy to please, within a narrow subset of easy ;)

Now we, as a family... do have stuff going on.  After the miscarriage last April, we decided maybe adoption/fostering would be a better route for expanding our family.  We headed down that route and along the way we realized it is actually harder and more painful in a number of ways.  So, we decided to go ahead and try both routes at once.  Within 3 weeks of having made that decision, I was staring at a stick with 2 pink lines.  I hesitated to announce it to anyone, as last time was pretty traumatic.  I kept waiting for the right moment to expand the circle of knowledge for our news. Every time I almost told, I'd have a minor complication, a little bleeding here, a little more there, a couple rounds of mastitis (yes, in pregnancy, so not normal).  All very nerve wracking given the past.

I waited past getting our MaterniT21 results (all normal), I waited past getting our anatomy scan, everything in the right place, everything growing on schedule and measuring for dates.  And I waited until we had our fetal echo... heart looks perfect :)

We're now 25 weeks pregnant.  Things are still kind of rocky, baby looks fantastic, however, I'm still working hard at doing my part.  When we had the fetal echo, they noticed my amniotic fluid was a little low.  I left the appointment on bed rest this last Wednesday and now I'm lying at home, working part time and focusing on drinking at least 100 oz of water a day.

Now in the interest of over-sharing for posterity, which is, after all, part of the purpose of this blog.  I will also share yesterday's adventure. I ended up going back to L&D on Saturday afternoon for some very persistent lower abdominal cramps. While at L&D they did put me on monitors and while there was a teeny tiny spike from around 20 to around 25 when I was feeling the cramping, it really doesn't seem to be uterus related.  I do appear to have thrush down under, which can cause abdominal cramping.  I keep checking my uterus to see if it seems hard, whenever one of these episodes come on, I don't believe it is.  The most disturbing part, and what made me head in, was the fact that they were time-able and had been occurring since early Friday.

I've been researching and researching, and there isn't much in the way of detail on that little tidbit.  Super frustrating.  However, Dr. Google and I do have a theory that I've got something wonky going on with my pelvic floor.  We'll see how that pans out.

All in all, I'm still hoping that this measurement will be considered a fluke and I'll go back to work. I'm ecstatic to have a healthy baby inside me and I'm hopeful she'll be sticky and stay in a lot longer.

My goal is 12-13-14, because it is a neat date :)

Ok, update accomplished.  I'll try and write something again next Sunday :)