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…