Vision Test Failure

When I dropped the girls off at preschool this morning I was handed a packet of information. Nadia failed the eye screening and thus they recommend we follow up with her eye doctor. Ugh. Remember those almost daily appointments in Iowa City for her eyes? And for Nora’s too. If it isn’t one thing, it’s another. And God help me if she needs glasses at this age. She won’t even wear shirts with short-sleeves, much less glasses! I remember being told preemies have a much, much greater risk of eye issues later in life, since they are born with undeveloped eyes, but I was so wishing we’d miss that boat! Guess not! I guess I should be thankful I didn’t get a packet for Nora too. Maybe that is still coming… Maybe these school screenings are very accurate. I can hope, right? As at her last appointment at the University, they said everything looked great.

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?

Keep Writing…?

I’m not sure the point of this blog anymore… It used to be therapy for me. Now it feels like one more thing I’m supposed to make time for, time I don’t have. I enjoy writing though. And please don’t take this the wrong way, but I’m not sure what I’m getting back from this blog. I soooo appreciate your comments and advice, I honestly do. But don’t we all need to feel like what we do is worthwhile? I used to get a sense of calm by writing down my feelings, especially when we were going through IVF and our NICU stays. Now I’m not sure though. I know some people have made their blogs into a business, but I’m not sure that’s where I want to take this, or even how I would. Write a book maybe? Who would read it?? What would I write about, that thousands of SAHMs haven’t already written? A NICU survival guide? Am I qualified to write such a thing? I feel like my preemies weren’t born early enough or tiny enough to really know what it’s like to have to survive the NICU. Or maybe feeling that way is a huge problem in itself. It was traumatic for me, but who wants to keep hearing that again and again and again? Start a non-profit to raise money? We need no more money. I should just donate more to worthy causes.

This morning I made a comment to Eric that it must be nice to wake up, shower, and think only of oneself. I meant, not to have to think about getting our girls up and ready, feed them, get them off to school, etc. It probably came out the wrong way, as he was instantly a bit defensive, stating how he wasn’t heading off to a vacation, and reminding me he has to drive 60 miles before he can even begin his day. Still, to me, those things seem somehow easier than trying to get a two and three year-old to eat breakfast and go potty…

I realize there are parts of Eric’s job he doesn’t love. He loves operating, he doesn’t love clinic as much as he loves operating. Today is a clinic day for him. But… he chose his career. Did I choose to be a SAHM? I don’t recall making that choice. I recall the NICU telling us, with both our girls, to keep them out of daycare for the first year of life…

I’m at a point in my life where I know my strengths and weaknesses from a professional standpoint. I’m afraid to say though, that if I saw an advertisement showing the duties of a SAHM, I probably wouldn’t apply…

For now, I’ll leave you with a few photos of Nora… she discovered the selfie!

Nadia – Another Holter Monitor

Another visit to the U today… this time to Ped’s Cadiology for Nadia. She had a, as in one, episode of SVT in the NICU, and two years later we are STILL going for checks. It seems a bit of overkill to me, but… I’m not the expert I guess. The first year of her life we gave her medication four times a day. FOR A YEAR. Thank God we are pass that. Today’s visit was another EKG, which looked good, and another holter monitor for 24 hours. Which she is now old enough to yank off herself! The cardiologist said if all is well on the monitor, we’ll be released from his care. WOOHOO!

I know I shouldn’t complain, I have two healthy girls. Things could be so much harder with two preemies, but the appointments are getting old. I’m still waiting on results from Nora’s last immunology visit. And I just remembered this morning that Nadia is due for another high-risk follow-up clinic visit, and Nora is due for another hearing test related to her meningitis.

Sitting in the Pediatric Specialty Clinic waiting area today… I was reminded how much harder life could be with special needs children. I often wonder why I was blessed with two healthy children, considering their rough entries into the world, but so many other parents were not as blessed. Luck? My girls don’t require any special care. What if they did? Would I be able to handle it myself, parenting alone so often? And then I think of our one remaining frozen embryo. What if… we transfer it? What if.. it doesn’t survive, doesn’t even implant? Or does, but doesn’t survive? Or does but is born too early, much earlier than our girls? The uncertainly terrifies me.

On our way to Nadia’s Cardiology appointment!

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…

FullSizeRender (13) FullSizeRender (14)

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.