Long Overdue Update

I kind of suck at writing lately. Which is a shame as I really like to write… but finding the time seems hard these days. Although really, what the heck do I do with my time??

Today is Wednesday. Wednesdays seems busier than most. Nora gets out of school early, Nadia doesn’t have pre-school but does have ballet in the morning, and Nora has gymnastics on Wednesday evenings. And starting next week Nora and Nadia will have gymnastics together! Oh, and it’s gloomy today. Raining, dark, not cold, but also not warm at around 40ºF.

Tomorrow Nora’s school speech therapist will be meeting with her. I have several concerns about her speech, stuttering, possible lisp, baby talk (a sign of PANS & PANDAS), and she still wants to spit out some chewed food, which I know is related to the muscles in the mouth and using them correctly. Or possibly a sensory issue with textures and such. Way back when we did feeding therapy with Nora, hopefully we don’t have to restart that.

Next Tuesday I’m getting back together with Nora’s teacher and their Area Education Agency representative to discuss the actual evaluation they want to do. I tell ya, this process is so long and drawn out! Just do the evaluation and let’s stop talking about doing it! Reminds me of all the meetings I had in my previous career life…

I will say, I think Nora is doing a lot better reading all the sudden. Maybe she doesn’t have an issue and just needed more time for it all to click… I guess we’ll see.

I’m still working with the doctor in Minnesota for Nadia’s PANS issues, and we are now having Nora treated as well. We don’t have an official diagnosis for Nora, but maybe it doesn’t matter. I’d rather treat the real issues than spend time deciding on a name for what’s wrong. In my mind, the real issue with both the girls is a combination of their crappy immune systems, and leaky gut, which are really tired together. Basically everything they eat and ingest, so not just the actual food, but the toxins on our US food, bacteria, viruses, the crap in water, the air, everything basically, leaks through their gut then into their blood and eventually crosses the blood/brain barrier. Their immune systems can’t fight everything like a ‘normal’ person’s could, thus we end up with all these random issues, including, but certainly not limited to behavior/mental health issues, skin rashes, sleep issues, stomach aches, brain fog, night sweats, God, the list is so long I can’t even really begin to list it all. So our treatment is varied as well, cleaning up their diets, which feels impossible with kids, cleaning up our environment to get rid of toxins, like our water filters, air filters, buying healthier of everything, and treating current infections and bacteria, plus making their immune systems stronger so eventually it can fight all this on it’s own. Which is all a lot easier said than done. I’m exhausted from preparing their medications and supplements each morning and night. They are sick of taking them. And even harder is cleaning up our diet. I’m trying to buy as much organic as I can. We are supposed to eliminate gluten and dairy, not because they are celiac, but because gluten and dairy cause inflammation in the gut in everyone. Of course the girls wants to live on white carbs. Probably part of the reason we are in this situation. So the eating is very, very difficult. And honestly, we aren’t completely gluten or dairy free. I fail daily. But it’s a process. Less is better.

Honestly, Nadia is doing really, really well currently. Not only is she wearing pants on a daily basis, she is also wearing underwear on a daily basis. THIS IS HUGE. I know it doesn’t sound huge, but it is, for us.

Otherwise, life feels very uneventful. There are only 35 more school days. Can’t believe that. I already registered Nadia for Kindergarten this fall, and Nora for 2nd grade. Can’t believe that either.

We had our final mental health evaluation for our surrogate process. Gosh, did I even mention all that?? Well, we did, so now we are in the waiting phase… We wait for the agency to find a ‘match’ for us. Our contract says they have ten months to do that, if I remember correctly. So we wait…

No Blood… Again

For those of you who follow me on Facebook, I apologize, as you already know this…

Nora’s immunologist in Iowa City ordered monthly IgG levels, basically until Nora’s body starts making it, or we determine her body isn’t going to…  In which case, well, let’s not go there yet.  If you remember back to this post, we got no blood from a draw here in our new town and thus had to travel back to Iowa City.  Iowa City ended up doing a heel stick as their labs are high tech and only require a tiny amount of blood for this test, unlike here, so it was decided that from here on out we’d get a heel stick here in town monthly, mainly as convenience, as surely the labs here can’t f up a heel stick, and the blood would be sent to Iowa City for results.  Yesterday was our first such draw, and again, it was a disaster.  First the lab said they could do the heel stick but claimed they needed three little vials of blood, rather than just one Iowa City requires.  Which was dumb, as the test is being sent there, so I know only one is required.  So they tried but could only get one tiny vial from her heel, which involved two heel sticks…  They claimed her foot was too fat.  She doesn’t even weigh 14 pounds!  Nora had already been screaming for at least half an hour at this point. Next a 25 year NICU nurse comes and looks at the veins in her arms and swears she’ll be able to get blood from one stick.  I agreed to one stick.  No blood.  And technically it was one needle, but they stuck it in several times, moved it around, it was just awful for poor Nora.  I have no idea how other parents watch their kids go through so much…  In the past 10 months I feel like I’ve reached my limit.  I guess I need to call Iowa City and make an appointment for a freaking heel stick there.

I was fairly close to Iowa City today…  for a haircut with my old girl, who I love!  It was soooo good to see her, and so good to actually get a good cut.  Nora went with me, as no sitter today, and thus I thought about scheduling the blood draw today too, but in the end, it just felt like too much for me in one day.  Am I just a wimp or what?  We left at 10:30 this morning, it was a bit over an hour in the car there, fed her quick when we got there before my hair appointment, got my hair cut, thankfully this awesome girl who works there was free and loves babies and entertained Nora.  It was too perfect!  After my appointment we stopped to see my mom at work, and then headed back home, another hour or so in the car.  We got home around 3:30 I guess it was.  Just felt like a long day.  Nora napped in the car some, but cried some too, she was worn out despite the naps.  Seems anything outside the norm throws her off.

In unrelated news, Nora actually ate some solid food yesterday, for the first time!  It certainly wasn’t the first time we’ve given her solid food, but it’s the first time that I can actually say I saw her swallow some rather than immediately spit it all out.  And I’m not sure if it really counts as solid food, as it was those Gerber puff things, but none the less, I’m counting it as a win.  I was getting worried, as she was seriously pushing everything out of her mouth with her tongue, and I’ve heard preemies are more susceptible to food aversions.  I’m hoping that won’t be the case for Nora.  When it comes to solids I’d say we are leaning more toward baby led weaning…  It just seems so much easier to give her whatever we are having rather than spoon feed her some random liquid.  We’ll see though.  I’m certainly not against baby food.

Question for those of you with older children…  When did you stop using an infant carrier as the car seat and transition to one that stays in the car?  I know Nora is far from the weight or height limit on our infant carrier, as she is only 25 inches long and 14 pounds…  But our carrier weighs over 10 pounds, so with her in it, well, it’s getting really heavy for me!  Would I be crazy to stop using it already?  And how in the heck would I know what to buy?  So far I’ve been told the Britax Advocate Clicktight, Peg Perego Primo Viaggio Convertible, or the Orbit Baby 3G Toddler are all good.  Any thoughts on any of those?  Or others?

Any why oh why must Nora fight me for diaper changes now?  And to get her dressed or undressed, it’s a battle too.  Is this just how it goes?

July 13, 2015 – 17 Weeks (6 Weeks Corrected)

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The weeks are flying by!  How it is the middle of July already???

Nora is doing really well, I’m guessing around 8.5 lbs now.  We have her high risk infant follow-up appointment Thursday morning so I assume they will weigh her then also.  Today was her hip ultrasound, required since she was born breach.  I’m not sure exactly what they were looking for but the radiologist told me Nora’s hips are immature, even for her corrected age, and thus he wants to repeat the ultrasound when she is 3 months corrected.  I assume this has more to do with her pre-mature birth and not so much the fact that she was born breach.  For the time being her doctor recommended having her wear two diapers so the thickness keeps her hips open and prevents her knees from touching one another.

Saturday morning, in the mist of trying to do 17 things at once, I spilled the milk I was warming for Nora.  Oh, and breast milk is really sticky!  Anyway, I decided I was just going to stick my boob in her mouth and forget about thawing frozen breast milk.  Well, it went okay I guess.  Not great, not awful.  If she is really hungry she was find a way to latch and does quite well once all settled.  She still pops off often and thus we start the entire process all over though.  Two feedings in a row I nursed her, but I’ll admit, neither time did she seem satisfied.  Maybe I’m just so used to her fortifier filling her up for hours at a time.  The other thing… I swear there is something wrong with her latch and suck.  She seems to have a lot of space on the sides of her mouth.  She leaks milk out, and I assume takes air in these spaces, which could be the cause of all her gas.  I did a little research online and came across some pictures of upper lip ties, and call me crazy, but I seem to think Nora’s upper lip resembles some of the pictures I found.  Below is a picture of Nora if any of you have experience with this.  And also below is a list of symptoms, and we have almost all of them.  I could hardly stand the pain from her latch Saturday evening, after only two feedings!  It’s almost like she bites down, with her gums, when she stops sucking to breath, I assume to try to maintain her latch.  I’m all ears for suggestions.  I’m going to ask about all this at her appointment on Thursday.

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I’m sick of washing bottles so I bought some of the Playtex Drop-Ins.  Not sure what I think of these yet, as they seem better geared for formula.  With breast milk I either have to thaw it and then pour it into these, or warm in from the fridge already in these, either way some work.  I’m trying to cut down on steps and dirty parts but with pumping and storing and feeding, well, I’m not sure the drop-ins solve my problem.  Willing to try them though!

The house is coming along, check out these pictures which were taken this past weekend.

Kitchen – Range/Hood

Master – Closet & Bathroom

Master – Closet

I assume a bedroom…

Kitchen – um, where is the rest of my island??

Another bedroom perhaps…

Front Entry

Lower Level Family Room

Front

Deck, that seems like a lot of stairs!

Where is Kona gonna poop???

Back

I’m happy so far, but very anxious for another walk-thru tomorrow.  I have to say though, the individual who is supposed to help me pick everything out… sucks.  She emails me almost daily with a new task, each time acting like I was supposed to be working on the selection for weeks.  For example, Friday it was stone for the fireplace, yesterday it was tile for the kitchen back splash.  Her emails are always like, what did you decide for such and such, and I’m like, lady, those weren’t included on your instructions for me!  How am I supposed to know everything we need??  Isn’t that her job??  And then of course everything takes forever to order and then she acts like it’s my fault if I take two days to pick something out!  And it’s not like she gives me examples or any direction.  This builder does complete custom so she’s always like, oh, you can look anywhere, online, wherever, just tell me what you want me to order.  Ugh…  Thursday I have to pick lighting, and gosh, I’m seriously at a loss.  Tonight I attempted to order all my appliances, which I’ve picked out, but the website crashed three times and emptied my shopping cart with 11 items, and honestly I’m just too tired now to add them all again.  And the sale ends tonight.  I might have to go to Lowe’s tomorrow.

Movers have been arranged, although we still don’t have a firm date.  Tentatively we are planning on the movers for August 7th and 8th as they want two days to move up, one to pack and the next to unpack.  Maybe that is next week’s task, to organize before they arrive.  Ya know, in-between picking out stuff I have no clue about.  Oh, just got another email, they need to know what I want for the railing down to our lower level…  This house is seriously supposed to be finished in two weeks and she is just now asking what I want for the railing???  I might lose it on her!  Notice my backyard in these pictures…  I was told sod would be in by the time we closed so I could get the yard fenced ASAP for our dog.

I’m sure there is so much more to share with all of you, but I’m tired and tomorrow will be another long day with the walk-thru and picking out the kitchen back splash.  Thankfully my mom is joining me to help with Nora!

July 6, 2015 – 16 Weeks (5 Weeks Corrected)

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Hard to believe my little peanut is already 14 weeks old!  Yesterday was Nora’s 4 month check-up and thus her 4 month shots.  She was not fond of them, and was a bit fussy yesterday, but we managed with some Tylenol.  She’s all smiles today!

Life still seems to be flying by.  I’m guessing you could have guessed by my lack of posts.  And lack of responses to comments on my blog as well.  I just don’t know where the days go.  Eric went to Cedar Falls today to meet with his marketing team, and it’s almost 7:30pm and I’ve yet to shower.  How is that even possible???  Is this normal??  I feel like all I accomplished today was a walk with Nora in-between feedings, diaper changes, pumping, feeding myself, and washing bottles.  Thankfully there is Royal Pains to pass the time while pumping!  I’ve made it to season 5, so perhaps I shouldn’t really wonder where my time goes!

Having Eric home the past week has been great.  He’s been attempting to study for his boards, but has been more than willing to take feedings or watch Nora while I run errands.  Being all alone again today made me realize how much of a help it is to have him here.  Eric did suggest a nanny again, not full-time, just some days to allow me some time to myself.  As much as I’d love a nanny, I feel a little guilty even looking into hiring one.  I don’t work, I only have one child, I should be able to handle this!  I don’t feel guilty about hiring a cleaning lady once we’re all moved though, that is a must!

Our house is still coming along, they estimate it will be complete the first week of August.  Eric starts August 1st so I assume he’ll stay in a hotel for that first week until we move in.  I haven’t packed or organized a single thing yet.  Eric’s contract includes moving costs, so I suppose I should look into getting some quotes for movers.  Oh, my to do list goes on and on.  I still need to pick out light fixtures, bathroom mirrors, and God only knows what else.  I fear daily the builders are just sitting there waiting on me.  I wouldn’t know if they were since I haven’t seen the house in over a month!

I know everyone told me motherhood was rough, but I never imagined such a huge commitment as pumping round the clock has put on me.  I suppose breastfeeding round the clock is no different, or so I assume, as I really wouldn’t know.  Nora was 8 lbs 3 oz yesterday, so we still have over a 1.5 lbs until we can stop fortifying my breast milk, and thus before I could even consider strictly nursing and not pumping.  Well, or at least attempting to do such.  I go back and forth on this.  It’s so easy for me to pull out a bottle in public and feed her wherever, rather than finding a spot to nurse her.  Although I guess I could still feed her bottles when out and about.  That would be mean pumping though…  Breastfeeding Nora continues to frustrate both her and I, but I’ll admit, it’s probably because it’s new to me, and her.  Some days I don’t attempt at all.  I decided to try just a bit ago, and guess what?  She did awesome at latching.  I had to do the whole sandwich thing for maybe the first minute, but then I let go and she was able to stay latched!  And she nursed for perhaps 10 minutes on that side with me only having to re-latch her once.  I guess I don’t have much to compare this to, but I’m calling this a huge success.  I feel clueless overall with nursing though.  I know how much in a bottle she will take every 3-4 hours.  With nursing though, how long does 10 minutes satisfy her??  It can’t be long, as it takes her MUCH longer to finish her bottles.  I would have offered her the other side, but she was falling asleep…  Maybe I’ll try again when she acts hungry next…

I’m not sure if other moms feel this way, but it seems like I’ve had a newborn for 4 months now.  Just this week I’ve started to notice some changes, Nora smiles when Eric and I talk to her and she seems to follow toys we hold in front of her, but otherwise, she’s still the same baby in the NICU.  Maybe I’m just too anxious.  Maybe I should focus on how amazingly healthy she is after all she’s been through.  And no, I don’t mean to rush her life, to wish her out of this tiny newborn phase, but it would be nice to feel like she’s progressing, that we aren’t stuck in the same stage forever.

 

June 29, 2015 – 15 Weeks (4 Weeks Corrected)

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I think I’m still in shock…  Eric’s residency is complete!!!  Six years ago we met and he was just beginning, and now, he’s finished, we have a beautiful daughter, and we’re planning a move very soon.  We are truly blessed!

The weeks are flying…  How is Nora almost four months old already??  In fact, I think Monday she is getting her four-month shots 🙁  Speaking of, and believe me, I don’t want to start a debate here, as I know this topic is hot, but for just a second let me mention vaccinations…

Since Nora was so sick in the NICU, twice, an immunologist will continue to follow her for at least two years, perhaps longer.  During that time she will not be allowed to receive live vaccinations.  It’s been explained to me that live vaccines are safe for those with normal, functioning immune systems, but not necessarily safe for those with known or suspected weakened immune systems.  Since we don’t know the status of Nora’s immune system yet, as several tests are still pending, she is not allowed live vaccines.  That said, there are several that children her age would have either already received, or should receive very soon, those being RotavirusMMR, Chickenpox, and the Flu in nasal form.

Before I say much more, let me first say that while I understand each parent has a right to decide what is put into their child’s body, they don’t have a right to knowingly endanger mine.  As more and more parents decline vaccinations for their children, the society as a whole suffers, in my opinion.  The last I will say on this is…  If you choose not to vaccinate yourself or your children, please let me know and refrain from contact with Nora.  I just can’t stress enough that Eric and I would love for Nora to receive every vaccination available, but since at this point she can’t, I need to protect her from others who could potentially seriously sicken her.

On a happier note, our house seems to be really coming along!  I still don’t have a potential closing date, but I know the walls were painted Monday (yes I finally picked colors) and a preliminary appraisal was completed last week.  Below are a few pictures from the appraisal, if you’re interested 🙂  I’ll leave the interior colors a secret for now and surprise you all later with more pictures!

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I must go clean bottles and pump, again.  Feels like all I do!

37w1d – Day of Life 57

I may have completely lost my mind, but before we get to that, some good news…

First, Nora gained 45 grams overnight!  We’re up to 2,455 grams, or 5 lbs 6 oz.  I was so scared she’d lose again, but she surprised me!

And second, I was told this morning that discharge will be either Friday evening or Saturday morning!  The infectious disease team wants us to stay for observation 24 hours past Nora’s last dose of antibiotics which I believe is Thursday evening at 5pm.  We’re getting closer to home!

In other news, another set of immune tests were drawn this morning.  And again, Nora was a champ, sucking away on her pacifier.  They needed more blood than usual, so from a vein rather than a foot stick.  She has truly been through so much in her short life thus far.  I’m quite unsure of all the immune tests ordered.  I know so far her T cells are fine, and her CH50 test came back normal, but beyond that, I’m not even sure what we are still waiting on.  I believe the test that was drawn this morning was DHR, but don’t quote me on that!  Hopefully Nora’s immune team stops by to chat before discharge.  Eric keeps telling me Nora is fine, that the tests they are running are for conditions so rare that only a few labs in the country test for them…  But I’m obviously still terrified.

So speaking of being terrified and losing my mind…  And no judgement here!  I ordered something to make me feel more at ease bringing Miss Nora home.  It’s a monitor similar to what they have in the hospital, but meant for home use.  Check it out here.  I realize it was probably unnecessary, but honestly, if $200 helps me sleep at night, it’s well worth it to me!

Nora is sleeping now so I need to follow-up on some discharge requirements, including review of “The Period of Purple Crying” and infant CPR.

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.