HKU

Heart and Kidney Unit (HKU)

Our new home until we are discharged :) Things here are crazy chill, from the minute Jordan got her room we pretty much had full access to do whatever we wanted with her. We can change her diaper freely, wipe her down, feed her bottles and even hold her!

I've never been so excited and nervous at the same time

In the HKU the nutritionist wanted to start Jordan immediately on her 30 cal/oz "protein shakes" to help make up for lost time. This was a terrible decision. In the above picture I was giving her her first 4 oz protein shake, about 5 mins after finishing she violently threw it all up :( We thought it was just a fluke, until she did it with her next one, and the next, and the next. 4 Bottles. The nurses were going to continue on this puke fest until I asked to switch her to plain breastmilk, they reluctantly agreed and BAM she held it down no problem, imagine that :) So She was on BM for all of Friday and did fantastic.  She has been eating, burping, going to the bathroom, pretty much meeting the all the normal baby requirements. On Saturday her daily chest x-ray showed that it was time to remove her chest tubes and pacing wires. Those hurt. They gave Jordan some morphine then grabbed those suckers and yanked, like starting a lawn mower! It looked terrible and boy did she wail, poor baby. It got a lot better fast though and she loves being held. As of right now we can go home Monday and we can't wait! I can't believe we will be bringing home Jordan with her little mended heart.

Jordan turns 4 months old

first getting to the HKU

Chest tubes out and feeling good

26 hours CICU

Wed 2/29

2pm- saw Jordan for the first time is CICU
7:40pm- started waking up, ventilator turned down to respiratory rate of 20
9pm- Awake with eyes open! Oral gastric tube removed
9:20pm- ventilator turned down to respiratory rate of 9!

Thur 3/1

1:40am- taken off of ventilator and put on O2 :)
2:20am- 2oz pedialite bottle
8:30am- 2 oz breast milk bottle
9:30am- Left atrial pressure line removed, arterial line removed
12pm- 2 right atrial pressure lines removed, catheter removed
3:30pm- got a crib and moved to the heart and kidney unit, GOODBYE CICU!

a few mins after being take off the vent.

Sweet girl

Peter got to feed Jordan her pedialite, lucky :) 

just taking a snooze, still pretty loopy

At first sight

(warning graphic photos at end of post)

We were warned it would be scary. We were warned about all the tubes. We were warned about everything, yet still nothing could have prepared us for seeing our sweet girl in the CICU.  Walking through the halls to Jordan's room was eerie, one room after another filled with very sick children, they were packed, all 26 beds were full most of which were babies.  Various beeps and alarms were going off in virtually every room. We rounded the corner and were led to the last room on the left. Fluorescent lights filled the room, 2 floor to ceiling electrical "trees" covered in equipment surrounded a twin sized hospital bed. There was a portable x-ray machine and technician taking chest x-rays, a nurse trying to do an EKG and a nurse finishing up attaching Jordan to the "trees". All this going on but the only thing Peter and I see is a lifeless Jordan spread out on a bed that is 10 times too big only making her appear smaller. Tubes and wires literally everywhere. A machine breathing for her.
The tears just poured down Peter and mines faces, it was as if it were a reflex, there was no stopping the flow. We just stood there holding hands and watched as they manipulated her little body to accommodate their needs. Numb. We were just numb.
After x-rays were taken, after the EKG lines were removed, after finishing hooking her up we finally got to move close enough to touch her little body.  The nurse pointed out and explained to us all of the stuff on her.  This is a list of what our 11 pound 24 inch baby had:
1. A ventilator tube in nose- breathing machine
2. Oral gastric tube- in mouth down to stomach to let air escape
3. Iv in left wrist
4. Arterial Line(stitched into Right wrist) -used to measure BP, blood O2 level and take blood without an additional stick
4. Iv in right foot
5. Pulse ox on toe- measure O2 level in blood
6. Monitor on forehead - measures O2 in brain
7. Monitor on back - measures O2 in kidneys
8. Catheter - tube used to drain urine
9. 2  Right atrial pressure tubes- inserted into right atrium to measure pressure(stitched in place)
10. Left atrial pressure tube - inserted into left atrium to measure pressure(stitched in place)
11.2 chest drainage tubes (stitched in) - allows blood and excess fluid drain out of chest cavity
12. 3 external pace maker lines - attached to heart and used to get the heart to beat at the right beat in a case of an emergency( these were never used :) )
13. 5 EKG leads on stickies all over chest- measures heart rate, pulse and respiratory rate

Over whelming is an understatement.

1 hour after VSD/ tetrology of fallot repair

1 "tree"

2 "tree"

The full picture :(

Leap day 2012

Jordan's surgery was scheduled to begin at 8:30am with anesthesia starting at 7:30am. We got to children's hospital around 6am and did all the regual registration stuff that one has to do at a hospital. We got called back to a "room" right on schedule where Jordan got wiped down with special wipes (they were warm too!) had all her vitals taken and then she was given a stylish gown :) We were very lucky that it was so early and she's such a good baby, she was sleeping most of the time, thank god becasue she hadn't eaten since 3am. 7:30 came and went, which we half expected, when are hospitals ever on time haha. We were informed we'd have a 30 min delay due to an emergency and since Jordan was perfectlt content we were alright with that. Waiting...waiting...waiting... Finally someone came and told us at around 8:50 that her surgery was pushed back by 2-3 HOURS due to the emergency surgery! I'm all about getting sick babies fixed but I would be lying if I said I didn't mind getting bumped, poor think was starting to get so hungry too. I decided I might as well go pump while I had the chance seeing as how I was going to have to do it every 3 hours anyway why not start now.  You'd think that being in a hospital setting, a Children's hospital setting no less, that one would be able to pump right there, no I had to go into the surgical center waiting room and find the "quiet room" which was occupied. Too bad haha I'm pretty sure I tramautized the teenager trying to do her homework in there by busting out my breastpump. Anywho, 5 mins into pumping Peter called my cell phone and with limited service I was able to make out "they are taking her NOW come back!" I have never moved to quick in my life, not that they would have, but I was just picturing them taking her back and me not getting to say goodbye. Needless to say I made it back within 30 secs and all was well, we had our quick hugs and kisses and that was that. We still don't know what changed from them telling us we'd have to wait 2-3 hours and then they took her 5 mins later. who knows.

in the "holding cell" before surgery, can you tell we'd been awake for 2 days straight

Heart families are special in the surgical center. We got a pager for text message updates and some meal vouchers. And now the real waiting began. We were pretty hungry so we chilled in the cafeteria and recieved our first page around 10:30 letting us know that surgery had started. A quick 30 mins later bypass had been started. Wow, just writing that is weird, my daughter was on bypass :( Everything seemed to go real quick after that. We just "relaxed" in the cardiology intensive care unit (CICU) waiting room; it was much calmer there and we were able go online and watch tv. Before we knew it we were making our way back to the surgical center to meet with Dr. Jonas (jordan's surgeon) because surgery was done. Everything had gone very good and Jordan was doing fantastic. They had closed her VSD and also found another small hole that they closed. They shaved down some "beefed up" muscle bundles in her right atrium, like we had thought, as well. Ever since Jordan was born we had been told that she had a large VSD, that's it. But apparently because of the muscle bundles and the other small hole Jordan's actual diagnosis was "pink tetrology of fallot". I haven't had a chance to look up exactly what that is but I will here shortly. We knew we now had about an hour before we could be reunited with Jordan up in the CICU. I was soooooo excited I couldn't wait to see her, I missed her. We had been told repeatedly that seeing her for the first time was going to be hard, we had went over all the tubes and stuff she would have with nurses and doctors, hell we even looked up pictures of other kids so we could prepare ourselves ahead of time. Whatever. NOTHING can prepare you for seeing your child like that Nothing...