Tuesday, May 3rd, 2011, started out the same as every Tuesday does. We drive to Scottsdale to see the Speech Pathologist who also does Craniosacral therapy for Whitney. We really like her and think it's beneficial. My mom always comes with us. On the way home, we stopped by the Whole Foods store to pick up some frozen veggies to make baby food with. Then we went to the GI office, Glendale office, like we do every single Tuesday to get Whitney's weight checked. She weighted 15 lbs. 7 oz. She's steadily gaining but still below the 5%. When we get home, she takes a nap and I feed her. Whitney loves to play the piano so I put her in the bumbo and turn the key board on. My husband plays, wonderfully, I don't play. The only thing different this day was packing. I made my list weeks ago of what to pack for her and us during the hospital stay.
Wednesday, May 4th, we woke up early to get ready to take our baby Whitney to St. Joe's Hospital for her procedure. We got all her formula prepared, packed the car, ate (Whitney couldn't eat for 6 hours before the procedure), got dressed and out the door. We had to be there at 8AM which means we had to drive in traffic on the freeway to get there. There was a big accident in the carpool lane which put us 20 mins behind. Thomas took work off to be with us and help out. My mom also came driving a seperate car. When we got there we got all checked in at the front, then went to the 2nd floor to wait. We dressed her in some huge hopstial gown and pretty much since then Whitney was not happy. We watched the Price is Right while they were getting prepared, and Whitney played in the crib with some toys. Our cardiologist, DR. P. came and talked with us and took us upstairs (elevator) to another waiting room. There the Dr. who was doing to procedure talked with us (for the first time), he was really nice and confident. The nurses also talked to us and had us sign a bunch of papers. Then I carried Whitney back to the OR, laid her on the table and kissed her hands till she fell asleep.
The three of us waited anxiously in a large, empty waiting. Then said they would update us by phone. We watched Legally Blonde on TV which was a great movie to distract us. After an hour of waiting I was about to call them, but Dr. P. came in the room to update us...everything was going well, basically. Several phone calls of saying everything is going well. Eventually Thomas's mom joined us. Four hours later at about 2PM they were finally finished. They explained that they ballooned open the Left pulmonary artery which worked well. They did not close the PDA or ASD because they were to small. She could benefit from the medicine and be weened off the oxygen if we stay an extra day in the hospital. Yes. They wheeled Whitney off to her room with out us but we followed shortly.
They kept her sedated for 6 more hours to 'keep her still'. She was not happy when she awoke and it was a long, rough night. Her throat was so sore from being intubated and having a camera thing down her throat. Our mom's stayed with Whitney while Thomas and I went out to eat at Subway. Then they left for the night and we settled in. The room was nice and big and private! plus we had our own bathroom! Way better then staying at PCH.
The next morning Whitney got a fever. She was so stressed out being at the hospital, poor thing. When ever a Dr. or Nurse who listen to her or touch her she would scream at them. We tried to calm her down with books and toys and songs. So couldn't go far, just reaching our bed to hang out and cuddle with us. It was so hard for her to sleep there too. We slowly tube feed her and she threw up several times.
Weening Whitney off the Oxygen was a success! They would go from 1 L. to 1/2 L. to 1/4 L. then Off! They monitored her closely and had to put it back on a few times when she got really upset. I think she misses her favorite toy to chew on but I sure don't!
Thomas and I were both able to spend the nights with her which was really helpful. My mom came back to bring us more formula, pillows and stuff. (we weren't planning on 2 nights...just one). While she was there we went out to eat again to Central Deli. Although the food at the hospital cafeteria is good, I just didn't want to go in, it would bring back to many sad memories. We ate there almost every day while in the NyICU.
Friday, we were so anxious to go home! In the morning the said Whitney was doing really well off oxygen and tolerating the medicine and that we get to go home. They began getting the prescription filled and covered by insurance, and getting our discharge papers ready. We figured we'd be outa there by 2PM at the latest. Time passed and passed, we watched the movie UP on our laptop, and played with Whitney and feed her too. A harpist came by to play songs for all the children individually. They wanted to take pictures and put them on there website and slide show's for the Harpist Foundation. It was actually really nice and calming for all three of us. They gave us a lovely CD too. Another lady came by and gave Whitney a blanket and teddy bear. It basically took them forever to discharge us! They weren't messing with Whitney too much today so it was easier. By 4PM we ordered a free parent dinner. Packed the car and were out of there! They took out her IV at the very last minute 'just in case'.
You can tell my little cutie was so happy to be going home!
Then next day life went back to our normal. Expect no oxygen! And no, I never got "use" to it. It was always a hassle and annoying. I love her being free! BUT this procedure set her back feeding wise. Before hand she was doing great by taking all 4 bottles (asleep)! And trying more solids. But now, she refuses the bottles and throws up in her high chair with just a few puffs or 2 bites of food. It's a constant battle to feed her, although I don't like that word because we try to be as calm and fun as we can while eating. We are using the tube a ton right now and it's frustrating but necessary for her. She actually lost about 3 weeks worth of weight during that week! It makes me so so sad to see my skinny girl threw up and not eat. I'm doing my best to endure to the end.