Eric comes home today!

It’s been a long week with Eric away. I keep thinking I’ll get better at this parenting alone thing. Who knows. I did get a ton of laundry done yesterday, but of course there are more piles today. It’s like the most unforgiving task ever, the gift that keeps on giving, usually in the form of poop streaks compliments of Nora. I’m treating myself with a very pretty mocha at my favorite downtown cafe before I pick up groceries.

I’m working on MOMS Club stuff, like the agenda for our next business meeting, planning our next board meeting, and finding committee leaders for holiday gatherings. I like this part of my role as president, the managing, organizing, leading part. With almost 50 members though, it’s sometimes hard to keep track of everyone’s demands wishes.

A friend of mine is getting ready to have her fourth baby. And I seriously can’t imagine. I’m still finding two a challenge, ever single day! One minute I’m thinking, I have these two perfect little ladies who complete our family. And then the next I think of our tiny embryo… just waiting for its chance to grow. Can I handle three? What if it splits and we get twins, as this is more common with IVF transfers? I can’t handle four alone so much… I’d have to hire help at home, which would completely change our family dynamic. So the question, how does one know when they are finished having children? My case isn’t typical though. I probably shouldn’t carry our embryo, as we know my chances of carrying to term are extremely small. A gestational carrier is a completely different ballgame. One we can afford financially, but what about emotionally? I was just reading about how traumatic experiences change our brain structure, possible forever. This could explain my anxiety and heightened depression since birthing two preemies. Will I ever find calm again? (Am I getting too deep for a Friday?)

A mom friend posted on Facebook how the day her babies were born were the happiest of her life. That is a completely foreign idea to me. Those days, and the weeks that followed each of my girl’s births were not happy or special. They were sad and terrifying and stressful, full of tears and longing to hold my alien-like babies. I was sent away from Nora’s NICU suite on an almost daily basis so they could gather more spinal fluid to see if her meningitis was improving. I left the hospital every night to sleep, waking to pump every three hours. Hardly exciting, happy times. It’s still hard for me to see new moms with their babies… Is that why I want another? Another chance at all the things I feel I missed out on with Nora and Nadia? The baby shower pictures with the big belly, the kicks, the visitors in the hospital…

Or am I just dreaming any of this is possible?

I’m not a crier 

I’m usually not a crier. But I was watching a recorded episode of Nashville last night, and a particular scene really got to me…

Now I know I didn’t purposely do anything to cause Nora and Nadia’s premature births and ongoing related issues… But I’d be lying if I said I didn’t feel quite guilty. I mean, my God, Nora had bacterial meningitis and sepsis as a preemie, two separate episodes. When they told us they said, I’m so sorry, as if she was already dead! I’m honestly shocked she’s doing so well. We still have many follow-up appointments, which reminds me, we need another hearing test for her, as she’s at-risk for hearing loss for several more years yet, I think until she’s five maybe. And Nadia, every time I look at her and will her to crawl or make a babbling noise I’m reminded of her brain bleed.

There is the rational side of it all… But then there is the side who wishes she could go back. To beg for the cerclage, or do more research on my own, or rest more during both my pregnancies. I don’t know, anything to change a 29 and 30 week delivery. And then I think of our frozen embryo. How do we give that little boy or girl a chance? Is it irresponsible for me to attempt another pregnancy? What if I delivered at 24 weeks next time? How would I live with the guilt of raising a possible special-needs child knowing my body was the cause?

I think back to the month we started our first round of IVF, how scared I was of the process… And here now, with two beautiful girls… The situation may be different, but the fear remains.

July 20, 2015 – 18 Weeks (7 Weeks Corrected)

 I feel a bit like a broken record, but I seriously don’t feel like I can get on top of my life right now.  (Nora is happy in her swing right now, but I feel guilty not interacting with her, not talking to her while I type this…)  The women who works for our builder is still constantly hounding me to make decisions, all last-minute, I need to start organizing and throwing junk out before the movers come, Nora is obviously a full-time job, and Eric left this morning for two days of orientation for his new job.  And that’s just the start of my to do list!  Case in point, Lowes called this morning, ten minutes before they were to arrive at our new house with appliances to install.  Um, the email confirmation I received said they would call 24 hours before to arrange.  Ugh.  I’m not even in the same city yet!  And our current house is a complete disaster, as I’ve given up on cleaning…  And poor Kona is not getting nearly enough attention.  She needs her nails clipped so badly I searched online yesterday for someone to come to the house, but came up with no options.  Apparently that isn’t a thing here.

In my quest to find more time in my days I’m still trying to focus more on nursing rather than pumping and bottle feeding.  Nora weighed 8 lbs 9 oz last week at her high risk appointment, therefore they recommended cutting back on some bottles with the fortifier and seeing if she continues to gain appropriately.  She is still only at 11% for weight on the preemie chart, but she’s sticking with her curve, so perhaps she is just going to be a petite girl.  Nursing continues to be a struggle though.  I have been trying more though, we can usually get in one feeding by breast, and then I try the next, but halfway through the second she is usually quite frustrated.  Maybe she just isn’t used to it and needs to practice more.  Or maybe it really is an upper lip tie issue.  Regardless, I made an appointment this coming Wednesday evening with a lactation consultant to see what help they can offer.  The nurse practitioner at her high risk appointment last week really discouraged me though, stating that if Nora hasn’t gotten it yet, she might never, and that lots of preemies never catch on.  This whole pumping and feeding thing is getting old though!  For the feedings I nurse her I’ve been skipping pumping, but that doesn’t seem to be working either, as then I’m way too full later, as I make way more milk than she drinks.  Will I always have to pump after feeding her?  If that’s the case what’s the point of focusing on nursing?

Besides the discouragement in regards to nursing, Nora’s high risk appointment was a success.  We’ll have these every few months for several years, and so far so good.  They basically ‘played’ with her, showed her toys to see if she would follow them with her eyes, made sounds to see if she would look in the correct direction, attempted to make her smile at them, checked her balance and head control, and about 100 other things.  She’s right on track for her corrected age which makes me feel great.  So far so good.  I know there is still a lot of risks for her development due to her meningitis, but for the time being I’m going to try to relax.

I have noticed that Nora is making more sounds, cooing I guess is what they call it.  And just a few days ago it seems she found her hands, as they are constantly in her mouth now.  Do babies put their hands in their mouths all the time, or is this a sign she is hungry?

Speaking of appointments, last week we also had Nora’s hip ultrasound, required since she was born breech.  Before we left that appointment the pediatric radiologist chatted with me regarding the results.  Apparently Nora’s hips are immature for her age, even for her corrected age, and are showing early signs of dysplasia.  His recommendation was to double diaper in an effort to hold her hips open and repeat the ultrasound in two months.  I wasn’t too concerned until her pediatrician called to follow-up and tell me that she wants us to see a pediatric orthopedic surgeon.  Ugh, like haven’t we already seen enough specialists???  Our appointment is this Wednesday and they want to rule out her needing a harness, which looks annoying, but not painful, from this video.  I realize we are so very very lucky with Nora so far.  She has been through so much and is doing amazing.  And I shouldn’t even think to complain, compared to what some preemies endure, but regardless, I so hope she doesn’t need this harness…

So my plan for the next two days until Eric gets home…  Chill at home with Nora, work on breastfeeding, and make a really good attempt at organizing for the movers.  Wish me luck!

35w5d – Day of Life 47

  • Weight: 4 lbs 14 oz
  • Tube Feedings: 20 cc every 3 hours on a pump over 60 minutes (5.4 oz every 24 hours).  She is still having some residuals so slowly increasing the feeds.
  • Breastfeeding: We were approved to get back to breastfeeding and so far she has done awesome!  Yesterday at 5pm she took her entire feeding by breast and again this morning at 9am.  We are allowed to ‘try’ to breastfeed one feeding every 12 hours, or close there to, since I’m normally not here at night.  I’m honestly not concerned about her learning to eat since she is already doing so awesome.  Granted, we are still using a nipple shield, but it’s still a month before she should be born, so I’m saying that’s pretty darn awesome!  Hopefully she continues to gain weight as a sign she’s getting enough when breastfeeding.  The only downside to all this, I’ll need to be at the hospital even more than I’m already here…
  • Antibiotics:  Will continue to treat meningitis until May 13th.  Last time a repeat lumbar puncture was done 48 hours after antibiotics ended, so perhaps another would be scheduled for around May 16th, we shall see.
  • Respiratory: Back to room air, no oxygen support, and doing awesome!
  • Testing out a crib today, so far so good on her temperature!

Overall, lots of encouraging news this week!  We got off oxygen, back to breathing completely on her own, starting back at learning to breastfeed, is back to gaining weight, and overall, she’s just looking and feeling a lot better after starting treatment for her second round of meningitis.  Another MRI of her brain was done this week as well, looking for swelling or abscesses from the meningitis, but it looked completely normal.  I was sooooo relieved!  The ultrasound of her abdomen came back completely normal as well.  We are having to use glycerin again for bowel movements, but hopefully once her feedings increase and she is a bit older she’ll be a little more regular on her own.

Nora is starting to act more like a baby, and less like a fetus, and by that I mean she actually has periods of wakefulness.  Granted, she still sleeps most of the day and night, but the first few weeks of her life were almost completely spent sleeping, and now she has fussy times and happy times in between the naps.  That said I’m having a hard time knowing how to comfort her.  Does that come with time as a new mom?  I feel like it’s more difficult here when she is trapped in a glass box all day.  Even the soon to be crib is difficult and takes time to get her in and out, so grabbing her every time she fusses isn’t as feasible as I picture if we were home.  And honestly, what do you do with a baby all day in one room with limited access to ‘baby stuff’?

And the last bit of great information this week…  We got moved to a much nicer room!  Still in bay 3, but at the end of a hall, so we now have a big window, a couch, TV, and private bath.  Not sure how we got so lucky, but I’ll take it!

Below is a picture of Nora I took yesterday, and then a picture of Eric as a baby.  Do we see Eric in Nora?  I need to get a digital copy of me as a baby too to compare…

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35w2d – Day of Life 44

  • Weight: 4 lbs 13 oz
  • Tube Feedings: 12 cc every 4 hours, which is only 2.4 oz every 24 hours.  She is still acting really hungry between feedings so hopefully we can continue to increase to get her back in the correct range for her weight and age.
  • Breastfeeding: Obviously on hold for who knows how long 🙁
  • Antibiotics:  Down to just one antibiotic which will continue until at least May 13th.
  • Respiratory: Down to a nasal cannula with just a little pressure!  She’s so much happier!

Overall, today was a good day.  We made some progress with the oxygen and increased feeds and Nora is definitely happier today, back to smiling in her sleep and sucking almost non-stop on her pacifier.  The infectious disease team stopped by to check on her, although didn’t really offer any answers.  They still suspect that Nora acquired the first e coli infection from my placenta, and this second infection, well, they aren’t sure.  They did say she was diagnosed on day 29 of life, and day 28 is the average for late onset strep in babies.  A repeat brain MRI is ordered to check for any swelling or bleeding from the infection.  I pray they find none.

Nora’s immunology workup is still in progress.  So far no answers, but they are waiting until Tuesday to redraw blood for more labs.  More to come on this I guess.  We should have answers before her antibiotics are complete, so at least until then I don’t have to worry about her getting sick again.  Too bad she can’t live on antibiotics!

In all seriousness though, how am I ever going to relax and not be terrified of her getting sick again?  I know this is not the same, but I can’t imagine how a cancer patient must feel, worrying the cancer might come back…  How does one live with that constant worry?  And of course I keep googling… which is awful I know.  Today I was convinced Nora has leukemia, as it’s twice as likely in IVF children and fits a lot of her symptoms.  Eric assures me there would be clear signs of this though…

Stress has exhausted me once again so to bed I go.  I pray Nora continues to improve and thrive.

35w1d – Day of Life 43

  • Weight: 2,240 grams, which is almost 5 lbs. (not updated)
  • Tube Feedings: 8 cc every 4 hours, which is only 1.6 oz every 24 hours.  I feel so bad for her, as she acts starving…  I know this is best for her right now, but it’s so hard to watch her cry between feedings.  This is being fortified to increase the calories.
  • Neonatal Venous Nutrition (NVN) – Nora is receiving nutrition via her PICC line.
  • Breastfeeding: Obviously on hold for who knows how long 🙁
  • Meningitis Status: Culture of spinal fluid drawn yesterday hasn’t shown any growth for 24 hours now.  Great sign, but from what I know now, I’m terrified every time they do anything that involves her blood or spinal fluid.  I’m so scared she’ll acquire another infection.
  • Antibiotics:  She is still on two now, one that works best for strep, her most recent infection, and another which is better for e coli, as a precaution.  I’m not sure how long she’ll be on this round.
  • Respiratory: She is no longer intubated, but on Sunday when they went to a nasal cannula she didn’t do the best.  She was forgetting to breathe and dropping her heart rate.  Since then she’s been on a newer method of support, Nava maybe, I could be getting the name wrong…  It’s a tube into her nose just to the back of her throat, and then also a tube in her mouth down to her diaphragm.  It will trigger a breath for her if she doesn’t take one in so many seconds, I think right now it’s set to 5 seconds.  Needless to say, she HATES these tubes.  Thankfully she is doing well on it and they are lowering her support daily.  I’m so hoping we are off this soon.  They gave her Tylenol this afternoon to calm her in case the tube in her nose was the cause of her fussiness.
  • Temperature: Bed is back to 36.5 C or close to that.  She is bigger now though, so hopefully once she is over this sickness she won’t need the temperature support.
  • Location: Bay 3, back to our old room, that view I thought I was finished with… So much for that!

I probably should stop googling meningitis…  It’s just scaring me for the future.  Of course no one can tell us what to expect, but so far we caught the infections fast, which I’m told is a HUGE benefit.  And comforting to know her brain MRI and EEG were normal.  I believe they will be ordering another MRI of her brain soon.  I just wish someone could tell me she will be okay.  Eric keeps telling me she will be perfectly fine, but is he just sparing my feelings right now?

Nora’s fussiness scared me today.  I mean, I know babies cry, but one of the signs of infection, specifically meningitis, is an inconsolable baby.  I know she is on meds right now and therefore it’s not getting worse, but it still scared me.  And what does this mean for once she is home?  Will I constantly be worrying she is sick again?  Will I have to shelter her at home with no visitors until her immune system can grow and mature?  What do other preemies mom’s do to prevent sicknesses in their little ones?

33 more days until her due date…  This would be so much easier if someone could tell me she will come home.  That my life will feel normal again.  That we will have happy days again.

 

34w5d – Day of Life 40

I’m beginning to strongly dislike posting updates that aren’t all happy…  Hopefully the all happy ones will be back soon.

So the facts:

  • Weight: 2,240 grams, which is almost 5 lbs.  I have to think this is incorrect based on how they weigh the preemies.  Nora has a lot of breathing equipment in her bed now, which I assume is accounting for the extra jump in weight so quickly.
  • Tube Feedings: Held until Monday but she is back on nutrition via her PICC line.
  • Breastfeeding: Obviously on hold for who knows how long 🙁
  • Meningitis Status: Culture of blood drawn yesterday hasn’t shown any growth for 24 hours now… more on this below.
  • Antibiotics:  She is on two now, one that works best for strep, her most recent infection, and another which is better for e coli, as a precaution.  Can you ever be too safe?
  • Respiratory: Intubated on a jet vent.  This thing is kind of loud and makes all kinds of interesting noises.  Eric is convinced it’s also a fax machine and coffee maker…
  • Temperature: Bed is back to 36.5 C, so hoping we don’t have to start all over on this too!
  • Location: Bay 1, blah.  I’m not a fan of it over here, and not only because I know Nora is sicker.  It just seems like the environment is more cold, more sterile, and for obvious reasons, but still.

I feel like I have so much to say, so many thoughts and feelings, but no idea how to get them out on paper, AKA, the internet.  This entire process is so much more challenging emotionally than I could have ever imagined.  You know how I was so worried about bonding with Nora and feeling like she was mine?  Well, I think I’ve finally crossed over to totally loving her, as my heart aches every time I think of what she’s going through.  Every time they come to draw more blood or redo an IV, which seems to happen a lot around here!  She fights the tube down her throat often, tries to cry but really can’t…  God, it’s so hard to watch her in pain.  They have been giving her Ativan to help relax her, and as much as I hate to think she is being drugged, it makes me feel much better to see her calm and relaxed.  Maybe they could give me some Ativan too!

I don’t even really remember where I left off on updates.  I’ve been updating my Facebook from time to time too, but with not as much information.  Basically just asking for thoughts and prayers to heal Nora.

I think officially they are saying this is Nora’s second round of meningitis since her birth almost 6 weeks ago.  I really thought we were over the first, which was caused by e coli in her blood and spinal fluid.  Her PICC line was removed last Monday I think…  which leads us to this new infection.

When Nora was found to be sick Thursday they immediately starting running all the same tests, including checking her blood and spinal fluid.  Her blood was immediately found to be infected with strep, a different bacteria than the first time.  Her spinal fluid was also checked though, and on the first look seemed to be clear of any infection.  When allowed to culture for several days though it was found to also be infected with strep.  Side note, when that lumbar puncture was done they accidentally hit a vein, so there was blood in the sample of spinal fluid.  Eric and another doctor here believe her spinal fluid is clear, that the growth found was a contaminant from the blood in the sample.  Perhaps it’s just her blood we should be worried about this time, but we might never know.  The treatment is the same regardless.

Nora has now had two significant infections during her short life, which has surprised her doctors.  At this point, their best guess is that when her PICC line was removed on Monday, strep was somehow able to creep into her blood and make her sick.  I’m told both strep and e coli are everywhere, so apparently this isn’t too far-fetched of an idea.  The good news, the blood sample they took yesterday hasn’t grown any bacteria yet, so a sign the antibiotics are already working.

Knowing that strep and e coli are everywhere leads us to why Nora is so sick from them, but yet other babies here aren’t.  Well, actually, some probably are, but it’s rare for a preemie to get so sick twice in such a short period of time they tell us.  That has led doctors to investigate a bit further, calling in more specialists, infectious disease, again, and immunologists.  We haven’t met with infectious disease yet.  They were here when Nora first got meningitis, but it seems we keep missing their visits this time around.  A pediatric immunologist was here yesterday to speak with Eric though, and from what I gathered, she really thinks these two significant infections are simply bad luck.  She doesn’t believe Nora has an immunological disease.  An entire workup is still being done, but since most of the tests are so rare, there are only a handful of labs in the country that can complete them, and therefore the results could take a week or more.  The immunologist did give us some information to read, which I haven’t made time for now, but will.  She also said that babies get most of their immunity from mom during pregnancy, but this happens mostly in the 3rd trimester, and thus Nora, like most preemies, missed out on that.

So we wait.

Nora looked very comfy this morning when I got to the hospital…

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I guess overall I’m just really sad and scared from this setback.  I was so worried weeks ago that Nora would have developmental delays, or possibly worse issues, from the meningitis, but now, with two infections, I’m that much more worried.  I want her to be a happy, healthy, normal child, but no one can tell us exactly what her future will look like.  There are plans for another brain MRI, but I’m not sure when that’s scheduled.  We’re also still waiting on ultrasound results of her abdomen.

She is such a sweet little girl, I hate to see her in pain, to be suffering, to be put through so much in just 6 weeks of life.  I want to be positive, to be hopeful, and I am, to a point, but there is so much I don’t understand.  I’m not terribly religious, but many keep telling me to trust God.  But why does God force these tiny miracles to endure so much…?  I want to be able to picture Nora home with us, but at this point I really can’t.  How do I know she won’t keep getting this sick?  How will I ever not be scared that her health is about to take a nosedive?  And she got so sick so fast this time.  If she was home with us it could have been so much worse…

I’ve given up on my personal goal of having Nora home by May 15th.  The antibiotics this time need to run for at least 14 days, but I just don’t see mid-May as a possibility for discharge now.  I’m sad, and angry, and fed up, and just sick of this place.  I thought the birth of my daughter would be such a happy time.  But instead the past 6 weeks have been filled with pain and sorrow.  I miss holding my little girl…

33w2d – Day of Life 30

  • Nora is up to 4lbs. 3oz. and her feeds were increased to 34cc. every 4 hours, which is almost 7oz. a day!  Well, if I did the math right 🙂
  • Eye exam this morning went well;, the results showed her eyes are immature as they would expect in a preemie her age.  They will recheck again in two weeks.
  • Antibiotics for meningitis were stopped yesterday and lumbar puncture (LP) is scheduled for tomorrow.  I so hope the illness doesn’t return…
  • If LP is good tomorrow they will remove her PICC line.  (Yeah, one more cord gone!)
  • Still working on lowering the temperature in her bed.  Apparently this is a slow process…  Thankfully I don’t know a single adult in an isolette, so the crib will come, in time.

Thank you so much to everyone who commented on my post yesterday regarding breastfeeding vs. bottle feeding.  I know I didn’t respond individually to each of you, but please know I read every comment and truly appreciate the insight and advice.  I did talk to our nurse, nurse practitioner, and lactation consultant today…  And the advice was all very similar.  They thought more than likely Nora will go home needing a few bottles a day of my milk fortified.  I expressed my concerns for wanting Nora to take to both breastfeeding and a bottle, and everyone agreed it would be best to keep up the breastfeeding efforts for the time being, give her longer to learn this process, and then later add in bottles.  I’m fine with this for now, but I know that if breastfeeding holds us back from going home, I will certainly push for bottles, if only to get us out of here faster.

I still have a personal goal for us to be out of here by May 15th, two weeks before Nora’s due date.  That gives us 29 more days.  We’re halfway there!

 

30w3d – Day of Life 10

Why do they call it day of life 10 anyway?  Wasn’t she alive long before last Monday???

Nora is doing well today.  She’s crying a bit more, which breaks my heart since I can’t hold her to comfort, but they say crying is a good sign, a sign she has more energy.  She’s keeping her feedings down with residuals (the amount left undigested in her stomach) of just 2.2cc, her threshold is 2cc.  I assume this will improve over time.  Nora is still breathing room air with a CPAP at just 5 RAM, 21% oxygen.  Besides her PICC line though, she now also has an IV in each arm to administer the antibiotics for meningitis.  I feel so bad for her…  She will have continued lumbar punctures as well to make sure the infection is clearing her spinal fluid, and blood draws as well, since the infection is there too.  Nora LOVES her binkie, but tends to drop her heart rate when she’s relaxed with it in her mouth.  The doctors aren’t too worried, saying drops in heart rate are very common in babies her age.

So a quiet day…  Antibiotics will be given for at least 21 days, so for now, we wait, and pray they work.  She did gain weight again, but now I forget how much, 25g comes to mind.  But then again, with my brain going every which way lately, that could be way off.

The not so great news is me.  I’ve felt awful since last night, terrible, terrible stomach/lower abdomen pains, constant cramps which are worse when I press on my abdomen, or whenever I’m moving really.  Getting in and out of chairs is difficult, as is walking.  I also now feel like I might have a slight temp as I feel a bit chilled, and you know how warm it is in these NICU rooms!!!  Nothing I have better be contagious, as I’ve been here all morning.  Granted, I’ve been washing and sanitizing my hands like crazy, but still…  I have an appointment at 2pm this afternoon to figure out my pain.  The nurse on the phone though my symptoms sounded like a bowel obstruction, but how can they tell over the phone…  Hopefully it’s not something serious, as I certainly don’t have time to be sick right now.