Family visits and taking time for myself while Jake is in the Hospital

Friday was a relatively good day.  Jacob's platelet counts are up to 71,000 which means that he is 29,000 away from the 100,000 goal that we need before the doctor will do his spinal tap for meningitis.  He is still modeling (splotchy look to his skin), but he is doing sooo much better this evening than he was last night.


KC came in bright and early this morning around 6 a.m. and took the day-shift for me.  He mentioned that he met with the Urologist who explained that his kidney issues needed to be addressed, but we needed to take care of the infections first.  So, they just wanted to put him on antibiotics until his surgery. 

Jacob spent most of the morning eating small quantities of milk in the morning, but the amount grew as the day wore on.  At one point he was up to 4 oz. again, but wound up throwing it ALL up again.  It's still kind of disconcerting that he's throwing things up, but I'm thrilled to see the progress (and lack of new developments) over the last 24 hours. 

I took the night shift again and had KC's family come visit.  Aunt Karen, Aunt Tonya and Grandma Allred all came and visited Jacob, held him and gave me some much needed 'adult' time.  Grandma Allred really seems to have the touch because she was the last to hold Jacob before they left and that little boy had some solid hard-core sleep time for a few hours after she left.  It was soo nice to have him sleeping so soundly and not waking up every 15 minutes because he was uncomfortable.

I even got to go home early - I left around 3:30 a.m. confident that he wouldn't be choking on his own phlegm or throwing up in his sleep and got to have 5 hours of my own hard-core sleep.  It was nice to wake up knowing I could face the world today.  :)

I came into the hospital room and saw Jacob sleeping like a baby.  Yay!  And aside from the occasional doctors visits and nurses checking on vitals, he's continued to sleep deeply for the last hour - thus my quick(ish) blog!!

They did another platelet count and said that his counts are up to 81, 000 (only 19,000 to go!), There is no longer ecoli in his urine and there are no new bad developments.  Dr. Mueller even mentioned we might get moved back to Pediatrics in the next day or two but said that they were in no hurry to kick us out ;)

Sooo, today is starting out to be a good day.  Hopefully, I won't have reason to get on this blog and write again today. No news is good news, right????

Why you should write all your doctors, medicines, and appointments down and keep them with you.

"What's the Name of your Pediatrician?"

"Valley Young Peoples' Clinic."

"Who is your doctor there?"


"Um, I'm not sure.  It's a conglomerate of doctors.  I know she's the newest doctor from Texas."

"OK......? Who's your cardiologist?"

"I'm not sure. He's one of the hospital doctors.  We're seeing him on Friday, but I don't know his name."

"You don't know his name? Do you know what he looks like?"

"No." I shrug my shoulders in exasperation "In the last 2 weeks I've had so many doctors come in and out that I can't keep them all straight. When I left NICU they gave me a list on a sheet of paper and told me I needed to show up to all the appointments."

 At this point in the evening I was pretty much overwhelmed and realized I REALLY need to be better organized about my baby's life and medical issues.  I'm way out of my league here.

Jacob had been slightly congested for the last 2 days, but being a mother of 3 other children, I thought nothing much of it.  There was no runny nose, no coughing, just a little raspiness that came and went throughout the day.  Then KC noticed last night that Jacob was acting a little 'unsettled'.

Basically, a normal day with baby Jacob entails waking up, feeding him, letting him sleep for 4 hours and repeating the process.  All he does is eat and sleep.  And he sleeps through EVERYTHING.  Courtney could be screaming like a banshee and Jacob would sleep right through it.  Last night, though, he seemed a little bit 'wiggly'.  He woke up easily, and squirmed a lot, so I cuddled with him and we fell asleep in the recliner, where we stayed the entire night.  He'd wake up every so often and wiggle a little bit, I'd rock him for a minute or two, he'd calm down and we'd go back to sleep.  Nothing monumental.  Just out of the norm for Jacob.

Finally, today around 3 PM KC decided that we really should call the doctor "just in case" (I was leaning towards just waiting it out over the weekend because I already had a scheduled appointment for Monday Morning - he could make it, right?) But after my doctor's "He has no threshold" talk last week, I agreed to call and give them his symptoms and let THEM decide if we needed to come in.  I called and gave the nurse his symptoms and she had us come in 45 minutes later to see the doctor.

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2 hours later the doctor told us that although his lungs sounded clear she didn't like the way that Jacob was laboring to breath and that she wanted us to go to the Sacred Heart Emergency Room for an echo cardiogram just to be sure.  She informed us that it wasn't serious enough to send him in an ambulance, but strongly advised against stopping at a McDonalds on our way to the hospital. 

Um, OK.  I guess we're not going to stop at home to pick up his diaper bag which we'd so intelligently forgotten in our haste to get to the doctor in the first place.

So, off to the Emergency Room we drove.  30 minutes later, I walked in, the nurses surrounded me in the waiting room (the doctor had called to let them know we were coming) and we were whisked off to a room before I could even finish the 4 line triage sign-in sheet.

Jacob's little toes while in the hospital

They checked Jacob out and decided he needed an IV.  Oh boy.  In ICU he'd been poked and prodded so many times he'd run out of veins and they put one in his head!  We warned the nurses and they were confident in their abilities so they began to prep Jacob for his IV.  2 hours, 4 nurses, 10 pokes/digs/failed attempts, and countless agonizing minutes of listening to my 18-day-old baby scream in agony as they tortured his little body just to put in an IV, the nurse cried "Uncle". She told us that they were going to leave the IV to the PICU nurses on the 3rd floor, and that we were going to have to admit Jacob to PICU. 

KC asked why he wasn't going back to NICU and they told us he was already too old for NICU!!  Gone for 8 days and the little boy is already too old!

So up to PICU we went with Jacob in my arms, exhausted from his screams of pain. They began the process of trying to install an IV again.  This time I couldn't handle it.  KC graciously volunteered to stay with Jacob while I wandered the halls for 20-30 minutes.  It wasn't so much the crying, as it was the fact that I've been where that little boy was at that moment in his life.  I've felt the doctors poke and dig, re-poke, stretch, pinch, warm, cut off circulation, etc.  For a grown woman who is prepared for the pain (IV's have been an ongoing problem for me since Elisha was born 15 years ago), having an IV in has always been one of the most painful parts of giving birth.  And to know that my 18-day-old baby boy had to endure the pain not knowing WHY he was being hurt just broke my heart. 

FINALLY when he had his IV in and things got settled, we discovered that his potassium levels were extremely high, which could cause damage to his heart, there was fluid around his lungs and heart, and that his heart had enlarged.  They put him on oxygen therapy and fluids to help bring down his potassium levels and "Lasiks" to get rid of the fluid around his heart and lungs.  So, this was the heart failure the NICU cardiologist had told us to prepare for, it's just that I wasn't expecting it to happen so FAST after being released and with so little warning or symptoms.  Jacob will remain on "Lasics" after he leaves the hospital, whenever that may be.  We're not quite sure yet.  But we're hoping they can get things managed so that he can leave on Sunday.  A lot depends on what the tests tell us tomorrow.  They will re-test his potassium levels at 4 a.m. and he has another (his 3rd since being born) echo cardiogram scheduled for the morning. 

Jacob with his Aunt Tonya visiting from Utah

The nurse asked me when we were planning on doing his surgery and I told her we were aiming for Spring after cold and flu season.  She reminded me that that was merely a goal, not a for sure thing.  I agreed and told her I understood that our Spring date was merely a goal and that anything could happen between now and then.  I wonder if that was her round about way of saying, "Don't count on it". 

Maybe I should become a little bit more prepared.  It's time to learn names, get them in my speed dial, and have everything ready "just in case" an emergency like this one comes along again....

Psych!!!

So yesterday I had my weekly "You get to spend all DAY at the doctors' office doing tests" day.

This Friday I got to go in for a Biophysical Profile, a growth scan, and then meet with my OBGYN to find out all the results and to see if anything needed to be done for the baby.  Yesterday, I drove 30 min to the ultrasound and had the baby kicking and moving the entire drive.  As soon as I got into the Ultrasound room, he decided he was tired and fell asleep.  Niiiiiice.  NOT what you want to happen when they are checking for fetal movement.   So we spent 1/2 hour trying to wake the little bugger up - they moved me onto my side, then back onto my back, then made me put my legs straight out, then gave me some apple juice to get him all 'sugared' up, then I emptied my bladder, they put a vibrating buzzer up to him to scare him awake...nothing.  This kid would NOT budge.  Is it too much of me to ask that he sleeps the same way when he's OUT of my tummy too?

Needless to say, he just barely passed the "breathing" part of the test, but he failed the movement part horribly. 

I went to my Doctor's appointment and he talked to me to see if the baby had been moving, which I told him he had.  He asked me if there were changes, and I basically told him my contractions were further apart but more painful.  He asked me if he needed to check me and I said, "Nope.  You and I both know that I'm not having this baby before induction date.  I've been induced with all of my 3 other kids".  Normally I'd at least get a smile from him.  Nothing.  Hmmmmm.

He told me that the baby had failed his BPP and that he needed to send me to the hospital for another test.  I said, "OK".  We discussed when induction would actually be (the 25th) and he realized we didn't choose a time, so he had Megan, his nurse take me to the scheduling nurse to schedule the induction  and even suggested to her that she take me to the hospital.  I informed her I'd been there several times already and I was sure I could find my way.  The whole time I was with them at the office it was if they were waiting for me to FREAK OUT or something....just kind of treading lightly.


C'mon.  Seriously? If I thought that something wasn't right, I'd be the FIRST person to be saying something.  Knowing that something can go wrong at any given time has made me ubber sensitive to what's going on inside me.  If Jacob hadn't moved all morning, I would have been concerned.  Besides, this is NOT my first pregnancy, and it certainly wasn't my first time hanging out at the hospital for some Stress Test to prove what the previous ultrasound had already confirmed...his heart was beating regularly and at the right speed and all was fine.  I just had a heavy sleeper inside me. 

So, anyway...I called Elisha to let her know I'd be staying a little longer than expected. And I called KC (who of course, was in St. Maries and 3 hours away from me with sporadic cell phone coverage)  to let him know I was going to the hospital, but not to worry...just DON'T ignore my phone calls if I try to call again later ;)  I stopped by the intake office (I hadn't turned in my intake paperwork yet for the actual induction date) and they looked at me funny for not going straight up to the Labor and Delivery office.  I just ignored them.

Finally, I made it to Labor & Delivery.  They had been waiting for me and already knew me by name.  They took me to a little room, hooked me up, gave me a TV remote ( I can't remember the last time I've watched TV during the day....nothing has changed.  It's all still CRAP) and left me to lay there for about 30-45 minutes as the machine monitored the baby's heartbeat. 

Funny thing happened....NOTHING. His heartbeat was just fine.  Nice and steady.  No arrhythmia, not stops, no gaps.  He was a normal little baby STILL sleeping.  Though I did get to notice that my contractions were pretty much 6 minutes apart while I was there.  Hmmmm something to keep an eye on.

Elisha Allred: Soon-to-be big sister of Jacob, a boy with Down syndrome

My poor little boy freaked all the doctors and nurses out for nothing.  He's nice and healthy.  So they sent me home.  I was glad to leave.  I was NOT ready to have this baby yet!  It looks like, however, that our family will get to spend the rest of this weekend GETTING the house ready. Just as soon as Elisha finishes up her Saturday Volleyball Tournament! :)