Wednesday, January 18th
5 am rolled around and the three of us reluctantly got up and headed out to CHLA. We were in for a long morning of pre-op appointments which included x-rays, labs, and a check-up with the surgical department. During her evaluation Zoe flaunted her charming ways and we could only think about how hard and sad it is to put her through this again. Little did Zoe know what was coming.
After settling in at RMDH, we got a call at 4pm that we had less then 30 minutes to rush back for more blood work. Apparently Zoe developed some antibodies which most likely was a result from the transfusion she received after her heart cath in December We were at first extremely alarmed since we were unable to get a clear answer as to what the problem was. Turns out it isn't a big deal at all, they just needed to make sure they had the right match of blood which is a bit more challenging when testing positive for antibodies. Long story short, she is fine and we got the necessary blood for her surgery.
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| playing at RMDH |
We ended our day by spending our evening with our fellow heart friends, Melissa, Brady, and heart warrior baby Ella. Brady cooked us some delicious steaks and we had a great night. Ella just had her Glenn the week prior and was already discharged from the hospital. It was so reassuring to see how well Ella was doing, you would have never know she had open heart surgery just one week prior.
5 am rolled around again and it was time to get ready for Zoe's big day. We needed to be at surgery admitting by 8am. We were full of nerves and dread, so hard to explain those feelings but they are just awful. I squeezed her tight and kept thinking is my baby going to come back to me? Is this the last time we are going to cuddle or laugh together? So incredibly hard and I never want anyone to experience that. Ever.
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| dressing for surgery |
The time came and we were called back to a tiny room where we dressed Zoe in her Sisters By Heart surgical gown. She was again assessed and paperwork was reviewed. The words I didn't want to hear were said "we are ready, time to go." My ears were flooded with the pounding of my heart, I could barely breathe as we were taken up to the surgical floor.
Fear was mounting as I tried to keep myself calm. I focused on Zoe and we jumped and danced and giggled at bedside. My sweet baby, she had no idea what was coming. The surgical team came around and led us to the dreaded doors and said this is where we kiss goodbye. I kissed her on the forehead and before I could even say I love you she was ripped from my arms and behind the closed doors. It was 8:30 am. Our hearts heavy, we walked to the elevator into the land of the unknown.
Our family came and sat while Zoe was in surgery. I had a really hard time and had to excuse myself to gain composure. I was falling apart knowing that my baby was lying on a table with her chest open and on bypass. Even though this surgery is "easier" it was one million times harder on me, on us. It seemed like an eternity between the time we heard they were working on her to the time when they asked for her bed to be taken to recovery. At 10:50 am she was on her way back to her room to be stabilzed. It was a good hour and a half before we were finally able to see her.
Word is she really fought them in the surgery room, wouldn’t go under anesthisia and gave them a hard time. She did the same when they brought her back to her room extubated. They thought she was too worked up and agitated and decided to intubate her again. I think that if they would have called us in it would not have been so traumatizing or difficult. They had to give her a parallytic and heavily sedated her to get the tube back in. Luckily that tube came back out at just after 7pm that same night. D, our favorite RT, was actually pretty upset with the decision to re-intubate her if that was how long they were going to keep it in. We agree.
So the first few hours after surgery she was extremely sedated and unaware of much that was going on. She looked great and her chest was picture perfect. Such a difference then from the Norwood when she came back with her sternum still open. She was sating very nicely and her skin color so beautiful.
Dr. Starnes came by late that afternoon and told us the surgery went perfectly and she was on by pass only 20 minutes. He said see you in a few years! Gosh I love that man. Everyday I am thankful he went into the medical field. Every day.
Friday, January 20th
One day post Glenn! How awesome is that!?! Pretty awesome except it also brings the ups and downs of post-op. She made it through the first 24 with nothing to complain about. By 10:30 am she was off the dopamine and dex, the milrinone was being weaned. The arterial and centrals lines were pulled late afternon. Our goals were to wean off the O2, get rid of fluids, and pull the chest tubes. Those were not so successful.
She started to develop a rattle in her left lung, which isn’t too surprising since she came back from the OR a bit wet on the lungs. This is typical when pumped full of fluids. Well, it seemed to get progressievly worse and she was having a hard time clearing her lung, turns out it was partially collapsed. I think it hurt her to cough and she just didn’t want to try very hard, most likely due to the chest tubes. With a bit of elevation towards her right side and a percussor therapy the fluids and gunk started to move. She was sating on the lower side then we all liked so her o2 was bumped up.
Then the chest tubes... oh those darn chest tubes. There seemed to be some milky drainage which of course was concerning due to past expereince with Chylus. Without going into all those details of what it is and our past history, which you can read here, we were besides ourselves. We wanted those tubes out as soon as possible. The drainage never increased nor did it really decrease through out the day.
We got back to Zoe’s room at about 7am after a short nap at RMDH. As we approached the halls to her room we heard what was undeinabily the screams of our child. She had blood drawn and an x-ray all at the same time and she was not so thrilled. Zoe seemed much more uncomfortable and was possibly getting the “glenn headache.” With some pain management she finally was calmed down, but still not feeling so great. On the positive side her lung x-ray came back much better. The bottom of the lung was clear, with some haziness still in the upper. She is coughing more productively and has improved significantly from yesterday. Her O2 has been at 2.5 liters and she is again sating nice and high so we are working on weaning again.
Both of her hand IVs blew and I was so tired of torturing my sweet girl. The first one we found out because they administered medication and her whole arm turned red, so not happy about that. The second one just caused so much pain when they tried a saline flush. I requested one to be put one in her foot in hopes that it will last through her stay as well as allowing her freedom to play with her hands. Fingers crossed since she doesn't seem to have much luck with them.
Cultures were drawn on her chest tubes to rule out Chylus but the concenus is it is just drainage. The milky drainage hasn’t increased even though she is eating well, in fact it seems be decreasing as the day goes along. It is possible that the old injury was disturbed but healing right up. So we are still giving her breastmilk and moving forward. We should hear about the results later this afternoon. Fingers crossed. The chest tubes were split today so it is possible the one that has been consistently clear with out hardly any output could get pulled.
Today has been a better day in those aspects, just need to work on keeping her comfortable and ahead of the headache game.
Sunday, January 22nd
The results came back on her chest tube cultures and she was well below the threshold to call the drainage Chylus!!! Woo hoo! The drainage pretty much stopped so the tubes are coming out. After two doses of morphine (ugh) the tubes were pulled out. YEA!!! This marked the first time I was able to hold my daughter since surgery. I sat there with her for hours while she fought the morphine.
While she and I were cuddling they decided to try to take her off of the O2. For about an hour we watched her dip and sit below 80 (they want her above 80). Her lungs still needed that one little O2 bubble to keep her up, so back on went the canula. I was bummed but mostly because she hated the tubes in her nose and was constantly wiping at them.
The good news is that we were going to the floor! We packed up our stuff and loaded her crib up. Away we went! Woo hoooo! This was just one step closer to getting our feet out the door.
Once on the floor, what do you know - well her foot IV blew too. Bummer. It was only being used for Lasix, but she was on a pretty high dose. After much pleading and pretty much my refusal to allow another IV they agreed to oral dosing. No big deal, we do it all the time at home. Problem solved, happy and free baby!
Monday, January 23rd
We woke up and had breakfast after sleeping on a tiny couch together. Feet in each others faces kind of sleep. Time came again to try to wean her off the O2 in the morning. I was very hopeful since her X-rays came back with great improvement. First round didn't go so well but Zoe was also very fussy. Time went on and we tried again. Success! Zoe was taken off of the O2! I quickly asked for a telepak so that she could be mobile around the room. We spent the rest of the day on the couch watching Disney movies and playing together. Word was we would possibly go home Tuesday or Wednesday!
Tuesday, January 24th
Same a Monday but Zoe slept with me on the small couch. :) Ate breakfast, played, watched Disney. X-rays came back great! Echo great! Started her on supplemental organic formula YEA! No more pre-digested nasty gag you with a spoon force it down the throat formula. We would have gone home today except that Zoe needed a Synagis shot which is only administered on specific days, this not being one of them. We gave her a bath and relaxed as much as possible in the hospital.
Wednesday, January 25th
Repeat the night and morning adventures :) X-rays good - Check! Doctors good - Check! Discharge papers - Check! Homeward bound! Oh well isn't that funny? As I write this I am just now aware that she was again discharged on the 25th - exactly 5 months after discharge from the Norwood on August 25th!
B and I decided to take the coastal route home and stopped in Belmont Shores for lunch since it was so beautiful outside. We then hopped back on the road to home where we were greeted by Grandmas and wine to celebrate. Oh so nice to be home!
Thursdsay, January 26th
Our first full day home and guess what Zoe decided to do. SIT ALL BY HERSELF!
Amazing that she just had open heart surgery a week ago and it seems to be no big deal to her! I am so glad that Grandma B was here to watch her do this.
Now...
Friends and family have delivered dinners to us through out the week and we are so thankful. Those little things make adjusting back to life so much easier. Thank you everyone!!!
We look forward to getting out more as the RSV season begins to pass. Zoe will finally meet all the friends and family that have been cheering her on for the past year.
My heart moms say life is so much different after the Glenn and so far it has proven to be so. I am trying to relax but it is hard to teach an old dog new tricks. I still live on edge waiting for the ball to drop, but heck can you blame me? But aside from that and most importantly...
We are enjoying our time home (the beautiful summer in January makes it so much more enjoyable!) with our special heart warrior.
Life is good!
