lumbar puncture – The MD & Me

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?

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…

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!

31w1d – Day of Life 15

I can’t believe Miss Nora is already two weeks old! Here is a picture I took of her yesterday when she was being a bit feisty. (She really needs a bath to get the rest of the glue and markings off her head from the EEG.)

During the past two days Nora has shown quite a bit of progress. She is up to 3.11 lbs now, still receiving my milk at 7 cc every 4 hours I believe, plus other nutrients through her PICC line. She’s back to CPAP as she was extubated yesterday morning around 11 am and hasn’t had any spells in the past 24 hours. I’ve definitely noticed her activity level increasing, as she was quite active and more awake yesterday than I’ve seen her since birth. She even let out a few cries that were quite loud, well, loud for her 😉 And, I got to hold her yesterday during her afternoon feeding!!! She was so sweet, held onto one of my fingers and fell asleep.

An echo of her heart was done yesterday as it was thought she has a slight murmur. Eric told me not to worry about the echo results, that lots of babies have murmurs and over time, as their heart more fully developes, the murmur resolves itself on its own. And that is exactly what the specialists just explained in rounds. So I won’t worry.

Another lumbar puncture (LP) is scheduled for 11 am today to see if her spinal fluid is free of infection. They plan to treat her meningitis with antibiotics two weeks beyond a negative LP.

I’m still feeling a bit overwhelmed with pumping every three hours around the clock. I shouldn’t complain though, as my pump goes right back to sleep in-between feedings! I have to assume though, that getting up in the middle of the night to feed your baby is way more exciting than getting up to pump.

I do still have a few concerns about pumping. I should probably just track down the lactation consultant here, but all of you are always so helpful…

Will I always be pumping every three hours? Or will the time in-between increase again, as the lactation consultant instructed me earlier this week to increase time from every 2 hours to every 3 hours?
There have been several times where for whatever reason I couldn’t pump right at 3 hours. Like yesterday I was holding Nora and went almost 4 hours, and my breasts felt like they were going to explode. I assume that’s normal, or no?
I’ve been applying lanolin after almost every pumping session, but I would still say my nipples are quite sore. Is it normal that burn/tingle randomly from time to time, when I’m not pumping? Even clothing rubbing on them seems to hurt.
I still feel a hard knot in one breast. I’ve tried heat and massage, but it doesn’t seem to be helping. And I’ve tried pumping forever to get all the milk out, but at some point, nothing more comes and the knot remains. The lactation consultant asked me if I have anything on my nipples that looks like small pimples, as I could have a blocked area. How the heck do I know what that should look like? And what do I do if I do have these pimple-like things?

And just like that its time to pump again 🙂