Friday, February 28, 2020

Day 28 - 4 Weeks Old - Passed Hearing Exam

Today was filled with typical hospital-type activities.  He had his lines changed on his IVs, his dressing changed on his PICC line, and got his Hep B vaccine.  Today's big victory was he passed the newborn hearing exam - yay!  That was a big relief to this mama's heart knowing that he can hear us.  We will have to follow up with an audiologist in the future since he's at a higher risk of hearing loss, but for now he's good. 😊 

Jesse had the day off, so he came to spend it with us.  There was a big water main line that busted in Houston yesterday, so it's made a bit tricky as far as water availability and safety goes.  Yesterday, we didn't have any water up on the 23rd floor.  Today, we were able to do things like flush the toilets, but were told to boil any water before consumption.  Fun times!

This afternoon, we FaceTimed the boys and got to see their sweet faces.  They are spending the weekend in Louisiana again, since Jesse is working and I'll need to be with Jude 24/7 at the hospital.  It feels a little like being in prison here, but each day brings us one step closer to home. There's several things we have to do (besides finish antibiotics) before we can leave the hospital, so I've been pushing to get as much done now as we possibly can.  Hoping that when antibiotics are finished and scans are done we will be cleared to go back to our apartment in Houston, then home to Dallas.

Thursday, February 27, 2020

Days 26 & 27 - Getting Antibiotics & Growing

Thankfully, not a lot to post today!  Yesterday and today Jude has been doing normal baby things and hanging out with me in hospital room.  The only thing preventing us from going home right now is him getting his IV antibiotics, which he has at least 11 more days of. 

Yesterday, Jude got to spend some time with daddy on his day off.  And because he only has IV lines left that are connected, he's more mobile - yay!  We could sit by the window with him and let him get a little sunlight ☀️ Right now it looks like he may have a reddish tint to his hair and be fair complected, so we have a lot of sunscreen in our future.

Today, Jude got to try out some of his outfits - we've been through three outfit changes already 😂

This was an outfit of Alex's ❤️ 

No changes during rounds today, just goals of continuing to eat well and gain weight.  He loves his Mamaroo 💕

Jesse is working again today, so another day of Jude and mommy hanging out in the room. 

Tuesday, February 25, 2020

Days 24 & 25 - Movin' On the 23rd Floor

Thankfully yesterday was a normal, uneventful, fever-free day.  Jude did well eating, sleeping, and other normal baby things.  He did have to go down to get a CT scan of his heart, but it was short and no anesthesia was needed. We even made an attempt to dress him for the day 😊

A Mammaroo - Jude's new favorite contraption

This morning, I dropped Jesse off at work, then went to the hospital to spend the day with Jude by myself.  We received the long-awaited and very wonderful news that we are able to move out of the CVICU and up to the CPCU (Cardiac Pediatric Inpatient floor).  We will be here for at least 12 more days while Jude gets his IV antibiotics.  On this floor the nurse to patient ratio is higher, so more reliance on care from mommy and daddy.  We are more than happy to care for him though because it means he is getting well!

Several of the monitors were able to come off, so no more stickers on his head!  And he doesn't have to be continually monitored on the blood pressure cuff.  Right now he's sleeping peacefully in his big boy bed, which makes my heart happy.  

We have a view of downtown now

One other thing that made my heart happy yesterday was this little photo:

Josiah was missing his mommy, so he sent me a photo.  Love him!

Monday, February 24, 2020

Day 23 -- Bacteria Found and Continued Improvement

Jude has continued to improve over the last 24 hours!

He is off oxygen and breathing well.  He has not had any more fever and he continues to eat well.  He is less fussy and seems to be very hungry -- he really likes to eat!

His blood culture is positive for a bacteria called Klebsiella.  The thought is the infection started as an infection in his PICC line and then spread to meningitis.  We are waiting on further tests to confirm that the antibiotics he is on will be sufficient, but the fact he is improving strongly suggests they are.  The plan right now is for a total of 3 weeks of antibiotic therapy -- that means we will be inpatient for at least 2 more weeks.  The duration could change depending on further testing or if he develops fever again. 

The boys adventures in Louisiana continue.  They got to sit in their cousin's race car 😊 visit the donkeys and drive around in the Ranger and Golf Cart.  All things they don't get to experience in Texas ❤️

Alex at "10 and 2" 😂 

Jesse heads back to work tomorrow, so I will be on my own with Jude.  Jesse works 24 hour shifts while in Houston and is scheduled to work 3 times this week.  Thankful that he has the opportunity to work while we are here, but we are going to miss him for sure!

We'd like to thank everyone for following along and for all the thoughts, prayers, and well-wishes.  Hopefully the worst of this hospital stay is behind us now!

Saturday, February 22, 2020

Day 22 - Things are Looking Up!

Jude was awake and alert today!  He's on scheduled Tylenol, so we aren't really sure if he's still running a fever.  But he was eating (lots!) and sleeping and doing normal baby things again.  Some victories for the day:

  • Oxygen was removed this afternoon and he is doing okay on his sats so far without it
  • He was moved back into a big boy bed last night
  • He started nursing again today without any issues
  • He had his IV line in his arm removed, so he only has one PICC line in his leg left
  • His white blood cell count went down which is good and his platelets went up, which is great
  • One of the cultures came back today testing positive for bacteria from his old neo-PICC line - this gives us an answer for the source of the infection
Lows for the day:
  • Because of the type of bacteria that was found on the culture, he will need a minimum of 3 weeks IV antibiotics (today was 1 week), which means we have at least 2 more weeks in the hospital
  • We don't know the exact type of bacteria, so we have to wait for more test results to come back.  Once we know the type, they will know exactly how to treat it 
Jude had a new visitor today and loved hanging out with Grampie! 

Also, Jude may be a little spoiled - we had quite a time getting him to lay down without fussing tonight.  We are thankful he had a good day today and hope he continues to improve daily.

Meanwhile, back in Louisiana, Alex and Josiah went on a day trip to Natchitoches to visit their aunt, then went to a crawfish boil.  Alex got to help wash the crawfish off and they both ate some., which a win with these two picky eaters.

Don't think Josiah was really into touching them 😂 

Friday, February 21, 2020

Day 21 - 3 Weeks Old

Today was a better day for Jude - yay! He’s on scheduled Tylenol now, so we may be masking the fevers, but he was so much more comfortable and alert. He even was awake several times today which was a huge relief for both of us. He was removed from the high flow oxygen and switched back to regular oxygen. Due to all the antibiotics his tummy seems to be upset, but we are working through that. We are not expected to get results on the tests to determine the type of meningitis he has until Monday. However, they are continuing to monitor his bloodwork to monitor his platelets, white blood cell count, etc.  Our hope is that he will continue to improve and have an uneventful weekend.

The older boys are staying in Louisiana this weekend to give them a break from traveling back and forth to Houston. Alex got his report card yesterday and made the B honor roll - we are proud of him for keeping up his grades even in this time of craziness that is our life. Yay Alex!

Thursday, February 20, 2020

Day 20 - Better Day!

Today started off a little rough with a 6 am phone call saying they were putting Jude on CPAP due to fast breathing. However, once we arrived and his fever went away, his breathing returned to normal. Overnight he had a blood and platelet transfusion to help with a couple of issues he has related to his meningitis.

He looked a little loss in all the chaos when we arrived. The CPAP was removed and changed to high flow oxygen where it remained for the rest of the day. It did have some apnea episodes, but nothing nearly as scary as yesterday.

His EEG wires were removed this afternoon and it showed no signs of seizure activity, which is great news! They don’t know what caused yesterday’s non breathing event. Hopefully, it will be a one time thing we never have to experience again.

The day continued in an uneventful fashion and we got him to eat from the bottle. We were even able to hold him again.

He got a bath and was settling in for the night when we left. Thank you everyone for reaching out and loving on us from a distance. Here’s hoping for another good day for Jude tomorrow!

Wednesday, February 19, 2020

Day 19 - Seizure Scare

Today started off okay. Jude did run a fever last night, but they were able to treat it with Tylenol and it went away. Results from a few more tests came in and they ruled out a few of the viral causes of meningitis. The other results will take several days to get back. In the meantime, he continues to get iv antibiotics.

He had a PICC placed in his leg this afternoon and that procedure went well. It will make it easier for them to draw blood going forward.

Then this afternoon while I was holding him, his heart rate, sats, and breathing plummeted. Thankfully Jesse was nearby and able to get him to start breathing again. The whole team came in at that point to assess him and get some medications going. He is currently getting a continuous EEG to monitor brain activity. They think he may have had a seizure but are unable to say for certain. It was extremely scary. And it’s so hard to hear him cry and not be able to comfort him. He has to stay in the bed and can’t eat for now, so he’s upset. Hopefully this was a one time episode and he will be okay. We both thought we had lost him today. Jude needs a break. His little body is having to work so hard to just survive.

Tuesday, February 18, 2020

Days 17 and 18 - Source of Fever Found

We are posting a little later this morning, because we wanted to wait for rounds to finish before writing.  The source of Jude's fever has been found.  Unfortunately, it is not good news.  Jude has been diagnosed with meningitis.  We are waiting for further test results to know whether it is viral or bacterial.  This is completely unrelated to his heart and is a whole new uncommon thing that babies can get.  Our hope is that it was caught soon enough and antibiotics started quickly enough that he may be okay.  I (Misty) honestly didn't know much about meningitis in newborns until last night.  Jesse obviously has much more experience in this field.  What I've learned since then has been heartbreaking.  Both short-term and long-term effects are currently unknown and we just have to wait and see.  I know Jude is a fighter and I sincerely hope he can pull through this; however, it is getting harder to keep our heads up. 

Yesterday the amount of sticks for tests was so hard to watch your newborn go through.  In the past 48 hours he has had a blood transfusion, echo, ultrasound, LP (lumbar puncture), 3 blood draws, a heel stick, and urine analysis.  In the afternoon they gave him morphine to help with the LP, so he was pretty out of it.  We are loving on him constantly now and he is eating well. 

When our two older boys left yesterday, we were all upset.  In an effort to not cause them further stress, we have chosen not to tell them about the seriousness of Jude's situation.  It would just cause them to worry, and we want to protect them from that for now.  They know Jude is sick, but not the seriousness of his sickness. 

We will continue to update everyone as we get more results in.

Monday, February 17, 2020

Day 16 - Fever Continues

Yesterday was about the same as the day before. Jude still has a fever and they still don’t know the cause. I thought we were making progress yesterday with ruling out some items, but it looks like they haven’t really even done that. Jude’s got everyone stumped and we are feeling pretty defeated. We had to say goodbye to our big boys this morning which is always hard. I hate the toll this process is taking on them. They are both so ready to be back home, and they are worried about Jude.

We are waiting to hear from the doctors, but it looks like Jude will be getting more tests done today to try to find the source of the fever.

Sunday, February 16, 2020

Day 15 - Fighting a Fever

Yesterday was another gut punch.  Jude was doing great in the morning, then around midday he developed a fever with high heart rates.  In a newborn, fever is very worrisome, so he had to get bloodwork, a catheter, start a couple of IV antibiotics, and will now be closely monitored for the next few days.  They aren't sure what is causing the fever, but maybe we will know more in the next couple of days.  This new development was heart breaking for us, because it means a new hurdle to cross before Jude is well enough to be released.

Sorry, no photos from yesterday.  Hoping for better things today.

Saturday, February 15, 2020

Day 14 - Happy Valentine's Day

Yesterday was a long and tiring day.  Basically, we were unprepared for how long it takes for a newborn to come completely out of anesthesia.  In the morning he was in pain, not eating well, and just in general felt bad.  Poor little guy!

Thankfully, by the evening, he made a turn for the better and seemed to be coming back to his normal Jude-self.  And we had to get a few two week old photos. ❤️

His little faces he makes put a smile on your face.  He's so serious!

Our other two kiddos came over in style 😊

We told them not to get used to it.  😂

We celebrated Valentine's Day with dinner at McDonald's and just hanging out at the apartment playing cards.

Josiah did not like this because he said it looked too dark 😂 

Celebrating Jude's recovery

Cookies from friends in Dallas from NYC
Alex was so happy!
For now the plan is to continue in the ICU this weekend until Jude is ready for step down.  We will keep everyone updated as things change.  For now, we are relieved that he is feeling better and the stent seems to be working.