Thursday, September 6, 2012

Blogging from the hospital

Sophia and I have been in the hospital for the past 14 days, with another three to go... I've posted the general outlines of this saga in FB status updates, but in the interest of recording our family history here on the blog, I thought I'd post an annotated version of those FB posts.  This is long, but hey, it represents more than half of Sophia's life to date...

Friday, August 24, at 2:18pm
In the hospital with Sophia, who woke up this morning with a 101-degree fever.  A fever that high in a baby this young means an automatic hospital stay -- poor little girl had a ton of tests done this morning, and she and I are staying in the hospital at least until Sunday morning, pending the results of the tests.  Right now, they think she has an infected/inflamed lymph node, which they're keeping an eye on; she's on IV antibiotics and they'll be doing an ultrasound of that lymph node this afternoon.  Hopefully, we'll be discharged Sunday with a simple oral prescription, but this is all still scary and stressful.  We'd appreciate prayers for our little girl!

Sophia is an incredibly mellow, calm, contented baby.  Generally speaking, she only fusses when she's hungry or when she's struggling with gas, so it's been relatively easy to soothe her and meet her needs.  In terms of the "Baby Whisperer" spectrum, it would appear that Sophia is an "angel" baby -- for which we're very thankful!  So when Sophia was unexpectedly fussy all day long on Thursday, August 23, I was a little concerned.  Unexplained changes in crying patterns are one of the items on the list of reasons to call the pediatrician, so I spent that day trying to decide whether Sophia's fussiness rose to the level of medical concern.  We thought it was more likely an extended struggle with gas, though, and put her to bed as usual that night.

The next morning, though, Sophia was noticeably warm to the touch.  I checked her temperature, and she was running a 101-degree fever.  So I called our pediatrician's nurse line that morning, thinking they'd probably just tell us to bring her in and/or give her some infant Tylenol.  When I told the nurse that Sophia was only 18 days old and had a 101-degree temp, the nurse exclaimed that that was "really high" for a newborn, and told me to take her to the ER.  Which promptly caused me to freak out and assume the worst.  I took her to the ER (leaving David and Joshua at home), where she had to undergo a neonatal fever workup -- blood draws, urine sample via catheter, chest x-ray, spinal tap...  And then they told me that Sophia would have to be hospitalized for at least 48 hours, to await the results of these tests.  They really don't mess around with fevers in babies under 28 days old.  :(  The nurses and doctors assured me, though, that these were largely just precautionary measures.  So my overwhelming reaction at this point was frustration at the idea of a hospital stay -- to be honest, I was kind of kicking myself for calling the doctor, thinking that we could have just waited it out at home rather than subject poor Sophia to this purely precautionary barrage of tests...

While the ER nurses were performing these tests, we noticed that Sophia's left cheek was red and swollen.  At first, I thought it was just a mark from her being held down for all of these tests, but it was hard to the touch and getting redder as we observed it.  So the ER doctor ordered an ultrasound of that cheek for later that afternoon, just to see what was going on there.

Friday, August 24, at 7:31pm
Thank you all, so much, for your love and prayers and support!  The ultrasound showed that Sophia has an inflamed parotid gland, which is likely caused by a minor viral infection that just has to run its course.  They still haven't completely ruled out bacterial infections (so she's still on IV antibiotics), or the more scary possibility of mumps, but the doctor says that's really unlikely.   Sophia has been a trooper through all of this, and eating and sleeping better than she was yesterday, so I'm encouraged!

The swollen lump on Sophia's cheek was very red and pronounced by Friday afternoon.  The ultrasound showed that her parotid gland, the largest salivary gland, was inflamed, but that there were no stones or abscesses to explain the inflammation.  At this point, the doctors thought it most likely that Sophia had some sort of viral infection that we just needed to ride out, but because we hadn't yet gotten the results of her blood cultures, they kept her on IV antibiotics just in case.  This has to be one of the most pitiful sights possible -- a tiny wee baby with an IV in her arm.  :(

Saturday, August 25, at 9:11am
Sophia update: our little girl has been responding well to the antibiotic treatment, and the swelling in her inflamed parotid gland has gone down noticeably.  Praise God!  But because this is a significant infection for one so little (and they're still waiting on test results regarding the precise type of infection), they want to continue her on her IV treatment for a minimum of 72 hours, so it looks like we're here in the hospital until at least Monday morning.  Sophia's doing great, though, eating and sleeping peacefully despite all the poking and prodding, and we're thankful for the excellent care she's receiving!

The typical hospital stay for a neonatal fever workup is 48 hours -- you go in and get all the tests done, and then you wait until all the tests come back negative.  But because Sophia had parotitis (inflamed parotid gland) as well as the fever, we were told that she would need to be hospitalized at least 72 hours.  So I mentally prepared myself to hunker down in the hospital for a whole three days... David and Joshua came to visit us Saturday morning, and we added "don't touch the buttons" and "don't pull the tubes" to Joshua's list of Sophia-related instructions (joining "don't touch Baby Sophia's eyes" -- it's actually really cute to see him gravely repeating these restrictions to himself as he gently pats her belly!).

Saturday, August 25, at 12:06pm
Poor baby Sophia...  The line on her cheek marks the extent of the swelling (to make sure it doesn't spread).  And they've splinted her arm to prevent her from pulling out the IV.  But she's still sleeping like an angel!

Sunday, August 26, at 2:40pm
The good news: Sophia's had no sign of fever for the last 24 hours, and the swelling and redness on her cheek is dramatically reduced.  (And she's continued to gain weight -- 4 oz in the last two days!)  The bad news: her blood cultures came back positive for staph, so she'll need a full course of antibiotics.  We're still waiting to hear what that means, but the doctor said with a baby this young, it's likely that we'll need to stay in the hospital for a total of two weeks.  :(  She and I are doing well, but would really like to go home soon!

So the whole "wait in the hospital for negative test results, with a just-in-case course of antibiotics" totally went out the window on the Sunday.  Sophia's initial blood culture came back positive for staph, so they took more blood to do another blood culture, to rule out external contamination of the first blood sample.  The second culture came back positive for staph again.  Which meant that we were stuck in the hospital for a longer stay... And poor Sophia had lots of poking and prodding ahead of her.  She would need to have blood drawn every day for a new blood culture, until one came back negative.  And her antibiotic treatment would continue via IV, but we were warned that she would likely need to have multiple IVs, as each one would only last so long.

At this point, I was told that she would likely need to be hospitalized for two weeks, which I took to mean two weeks total, including the days we had already been there.  Which seemed interminably long...

Monday, August 27, at 5:47pm
So far, Sophia's blood culture from yesterday is coming up negative for staph!  The hospital keeps cultures for 5 days just to be sure they're not growing anything, but this is a good sign.  She'll need IV treatment for 7-10 days from the first negative culture -- and the plan is to put in a PICC line tomorrow, which frankly terrifies me, so I've stopped googling details on the risks/benefits of that procedure.  :P  But we are so thankful for the good news today!  Please pray that Sophia will continue to take all of this in stride, and for this procedure tomorrow -- more details to come as I get them.  So thankful for all of you and your continued love and support for us!

Monday afternoon, I was told the good news that the Sophia's blood culture from Sunday was negative!  And they had also determined that Sophia's strain of staph was "sensitive to everything," i.e., the opposite of drug-resistant, so they were able to switch her to a narrow spectrum antibiotic tailored just at this type of staph.  The doctor also clarified that the length of our hospital stay was measured from the first negative blood culture (not from our first day in the hospital, unfortunately).  She was going to check with the infectious disease specialists at CHOP (the Children's Hospital of Philadelphia), but she thought that Sophia would need IV treatment for 7-10 days, so I started hoping that we'd be home by the end of the week.

Because Sophia needed a long course of IV antibiotics, the doctors recommended getting a PICC line put in -- a peripherally inserted central catheter.  Instead of having peripheral IVs (which have 0.5"-long catheters, and fall out of the vein or are otherwise rendered useless after a short period), they wanted Sophia to have a more stable PICC line (long catheter goes from an arm or leg into the chest cavity).  This way, she wouldn't need to be poked in another limb or another vein every couple days, and the medication would be more quickly distributed into her bloodstream.  Totally makes sense -- but also totally gave me the heebie jeebies... But after I posted that status update, I had so many nurse and doctor friends reassuring me of the safety and convenience of the procedure, which was such a huge help to me!  We were going to go with our doctor's recommendations anyways, but it was encouraging to have the external confirmation from others.  So we were set to have the neonatologist in Princeton put in a PICC line the next day.

Tuesday, August 28, at 3:38pm
About two seconds before Joshua smeared cream cheese onto Sophia's bassinet in a very sweet, though somewhat misguided, attempt to share with his sister.  ♥

David and Joshua had been visiting every morning of our hospital stay.  They would swing by Bagel Barn on their way over (for David's breakfast and Joshua's second breakfast), and we would all eat and hang out together.  Above, you can see Joshua trying to share his blueberry bagel with his sister.  :)

Poor Joshua had just gotten used to having a baby sister in the house -- in the mornings, he would come charging out of his room to find me feeding Sophia in the nursery, and he would climb up onto the daybed to hang out with us.  With us in the hospital, David told me that Joshua would wake up in the mornings and then search the entire house for Mama and Baby Sophia, as though we were hiding from him somewhere.  Broke my heart to hear that...  But it's also really sweet to hear that Joshua missed his little sister!

Wednesday, August 29, at 9:27am
A slightly discouraging update: as it turns out, Sophia needs 14 days of IV antibiotic treatment, not 7-10, which takes us to Sunday, 9/9, at the earliest.  She's responding beautifully, but because staph is a nasty bug and because she's so little, 14 days is the recommended course of treatment.  They weren't able to get a PICC line in yesterday, so they're going to try again today; if that fails, we'll be transferred to CHOP (down in Philly) to get the line in, in what will hopefully be a fast outpatient procedure.  It's hard not to feel discouraged, as it seems the treatment plan just keeps getting longer and more extensive, but big picture: Sophia is doing great (she's such a contented little baby!), and we're in very good hands here.  Please pray that God would continue to sustain and strengthen all four of us through the rest of this hospital stay!

The doctors here in Princeton had conferred with the infectious disease specialists at CHOP, and had determined that for a baby as young as Sophia, with an infection as potentially scary as staph, 14 days of antibiotic treatment would be necessary.  And that's 14 days from the first negative blood culture.  So we'd gone from 48 hours, to 72 hours, to 7-10 days from first negative, to 14 days from first negative... This news also came in the middle of failed attempts to get a PICC line in.  The Princeton neonatologists tried first in Sophia's upper arm, and then (horrifyingly) in her scalp, but were unable to get the catheter inserted.  So this was the low point of our hospital stay, where it felt like everything that could go wrong would.

Which I knew to be a silly and irrational view of things.  Sophia was handling everything beautifully -- no more fever, eating and gaining weight like a champ, and calm in the face of all the needles and disruptions.  I continue to marvel at how contented our little girl is -- if she were fussier, this hospital stay would be so much rougher on me.  So in the midst of my anxious and fretful moments, God reminded me of His faithfulness to our family.  And I was so encouraged by all the Facebook love in response to my status updates -- including multiple offers of visits and a place to crash if we ended up needing to be in CHOP for any length of time.

Thursday, August 30, at 8:15am
The second attempt to put in Sophia's PICC line here in Princeton failed -- the neonatologists here do this procedure by visual exam and typically on tiny preemies with very visible veins, so our 9+ lb girl with her chubby arms needs to have this procedure done via ultrasound/X-ray down at CHOP.  (But at least the reason why we need to go to Philly is because Sophia's so healthy!)  We'll be transported via ambulance this afternoon, and if all goes well, transported back to Princeton this evening.  Thank you to all our Philly area friends who have offered us a place to crash -- we're so grateful for your love and support!  Hopefully we won't be there long enough to need a separate home base, but we'll keep you all posted.

At 1pm on Thursday afternoon, Sophia and I got our very first ambulance ride.  We had a 3:30 slot for the PICC procedure, so I figured we'd probably be back in Princeton by around 6pm or so.  I hadn't counted on all the possible delays... There was a procedure before Sophia's that went long, and then I had to go through informed consent meetings with the sedation doctor and the radiologist, so Sophia didn't even go into radiology until about 5:30.  

Thursday, August 30, at 4:47pm
Waiting our turn at CHOP... And look, her eyes are the same bluish gray that Joshua's were in the beginning! 

The procedure itself took about 45 minutes, and went without a hitch.  They used short-acting sedation meds, and told me that Sophia would likely wake up and want to nurse within 15-20 minutes.  Half an hour later, a whole series of nurses began to try to wake her up.  One hour later, she was still totally zonked out, despite all our attempts to stimulate her.  An hour and a half after the procedure, they did a quick foot prick to check her blood sugar (and also in hopes that the needle stick would help wake her up) -- her sugar was fine, she was fine, she was just very very sleepy.  Finally, two whole hours after she'd had the PICC line in, we managed to wake her up!

With all the delays and with our girl being such a sleepy, sleepy baby, we didn't end up getting back to Princeton until after 11pm.  Loooong day, but at least a successful one, from a medical standpoint!

Friday, August 31, at 9:41am
Back in Princeton with the PICC line safely in -- praise God!  Yesterday was a long day (didn't get back until after 11pm), but we're hopeful that the rest of Sophia's hospital stay will be boring and uneventful.  And in other awesome news, Grandma will be arriving tonight to help out for another week or so!  We're all excited to see her, but I think Joshua especially. :) 

And from this point on, our hospital stay has normalized into a stable routine.  No more new IVs, no more blood draws -- just an antibiotic infusion into her PICC line every six hours.  We've mastered the art of nursing with tubes and wires (the PICC line, plus various monitor leads), and Sophia has put herself on a pretty regular three-hour cycle of nursing, staring intently at my face, yawning, and then napping.  :)

We asked David's mom to come back out when it became clear that Sophia would be hospitalized well into September.  Things have started to get busy for David with the beginning of the school year (he's currently in Ocean City on the PEF beach retreat), so we needed to figure out a childcare solution for Joshua.  So Grandma made the long drive out again -- much to Joshua's utter delight!  We are so thankful to have her help, and for the continued opportunity for Joshua to spend time with his beloved Grandma.

Sunday, September 2, at 4:13pm
Much easier to sleep without hand, arm or scalp IVs! One week down, one more week to go...

Our beautiful little snugglebug.

We have so much to be thankful for -- that we caught the staph infection early, that it's not a drug-resistant strain, that Sophia has continued to be content and mellow throughout this entire ordeal, that we have such excellent healthcare so immediately available... And we are also incredibly grateful for the wonderfully supportive community of friends, both local and far-flung, who have been thinking of and praying for us, and have provided such encouragement and love through Facebook, emails, phone calls, Kindle gift certificates, flowers, etc.  Thank you all for caring for our family!

Just three more days left to go, Lord willing...