Nadia has another yeast infection. And of course she doesn’t like cream on her bottom as it just reinforces her ‘wet’ feeling. I’m considering stopping her antibiotic. I hate to, as I trust the PANS MD who is following Nadia, but a huge part of me feels like it’s doing more harm than good, at least right now. I’m going to skip it today, and I guess email her doctor and see what she thinks…
This afternoon is our second physical therapy appointment. I have to admit, we weren’t great about doing the exercises… so this might be a waste of time. And I’m considering stopping the occupational therapy through the summer.
I’m looking through recipes again, attempting to dream up something for dinner… What about Ham Balls in BBQ Sauce? My girls have liked meat balls in the past. Which I know doesn’t guarantee anything! I’ll definitely have a box of processed potatoes or noodles on hand as a backup!
On another topic… I should know better than to attempt to educate, or perhaps the correct word is argue, with ignorant people. I’m so sick of people saying the flu shot is bad. Or that big pharma is killing us. Seriously people. Have you ever needed an antibiotic? If you don’t believe in what you call big pharma then don’t you dare go to the doctor when you’re sick. You stay home and suffer and God forbid you die! Nora is alive today because of very strong antibiotics that killed meningitis in her tiny, premature body. Kids are dying, yes dying, from the flu, even today. Get the damn flu shot. The problem with the general pubic doing their own research is that they often don’t know where to look, by no fault of their own… Or they don’t have access to the peer-reviewed research. My blood boils just thinking about this. So yes, I had to un-friend another acquaintance on Facebook for their ignorance, and that of their friends. Life is too short. I just can’t. Vaccinating and getting the flu shot isn’t just for your own safety, but for those with weakened immune systems. Nora for example. So f you for thinking you know better than the thousands of doctors who went to school for 25+ years and work their asses off to save you. Don’t ask Facebook for medical advice. Ask your doctor. If you don’t have a doctor you trust and respect, find one.
I feel like this little chick is gaining weight so quickly! 5 lbs 3 oz already! Nora is no longer a tiny preemie!
We’ve moved to ad lib feedings, meaning as often and as much as Nora wants, although never longer than 4 hours between feedings. Her doctors are still recommending some supplementation to increase her calories, currently she needs 4 bottles a day with the fortifier and then the rest can be breastfeeding. Totally not a problem as I’ve been sleeping at home and thus they give her bottles at night anyway. So far she’s taken to bottles and breastfeeding equally well, no issues. We’re still using the nipple shield, but I’m confident in time Nora won’t need it. And I guess if she always likes it, so be it. It doesn’t bother me, in fact, it’s probably more comfortable for me actually. She is far gentler on me so far than my pump. Finally, something in this process is easy!
We’re slowly doing away with more wires. Yesterday they discontinued Nora’s lipids and IV nutrition which were both fed through her PICC line. Two less cords! She still has the PICC for the antibiotics, and will have that until we’re discharged; they run saline through it whenever she isn’t receiving a dose of meds. We still have all the monitoring cords, but those will stay until discharge as well. And then her feeding tube is still in, but the nurse said since we aren’t using it anymore, if she pulls it out they will leave it out. No idea why they don’t just take it out… But I suppose you never know when you’ll need it. Basically Nora is just a normal baby here on IV antibiotics. I’m feeding her during the day and the nurses take over at night. She still sleeps a lot so I relax in her room, send emails, blog, text, etc. And by relax I mean worry about her getting sick again once we are home.
Speaking of home, the nurse told me this morning we will be discharged as soon as the antibiotics are complete, which by my calculation is next Thursday, a week from today. For some reason though I highly doubt they are going to yank out her PICC line and immediately send us on our way. I’ll be happy taking Nora home next Friday or Saturday. And now that I said that, there better not be any more setbacks. I’m not sure how much more I can handle!
Lastly, I want to thank my mother and step-father. Last night they stopped over to pick up Kona and keep her until Nora is home. This is a huge relief to me, one less stress. When I was at the hospital I was constantly thinking about when I needed to run home to let Kona out. And when I was at home I was constantly thinking about how fast I needed to get back to the hospital for Nora. Now I can spend more time with Nora and not feel bad for neglecting Kona.
- 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…
- 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.