Sunday, February 28, 2010

Finally going home

Well...the cath didn't go exactly as planned. They were not able to get access to her veins and arteries through her groin. This means that they were only able to get pictures through the artery in her neck. Dr. Prieto assured us that it was no big deal and happens sometimes. It means that for her future caths they will know this and try to get access other places. Her is how we have spent the last few days:

Friday: Got to the hospital at 6:30 am. They tried to start IV fluids around 7:45 am and could not get an IV. I went back to the cath lab with Hope (only one parent is allowed in there). They put her under and then I had to leave. No updates until 11:00 am when I asked what was happening. I received the above news. After that we were hopeful that everything would be fine and it would only be a couple more hours. At 3 pm, Hope was in recovery. She was NOT happy! She was in a lot of pain and her sats were really low. Dr. Prieto was kind of worried about her sats and decided it was probably best if she stayed overnight for observation. We knew this was a possibility, so no big deal. Up to step-down we went...planning to come home on Saturday morning.

Saturday: Talk about bloating. We knew they were giving her extra fluid because of her kidneys, but she weighed 400 grams more than the day before. She doesn't gain that in a month, so we knew we had to spend the day trying to get the fluid off of her. The fluid was also affecting her sats...which means she was put on oxygen through a nose cannula. She hates that and I don't much like it either, but it was needed as her sats were running in the 50s...usually they are in the high 70s or low 80s. By 6 pm, we knew we were here for another night. Marilyn and John brought the boys up for dinner and they went home with least one of us got a good nights' sleep. I stayed with Hope and worked with the nurses to get her sats up while she was on room air. Around 8 pm, I pulled out the nose cannula and she was officially on her own. She did really well all night with her sats staying in the high 60s and low 70s. That was good enough to let her come home.

Sunday: We are almost officially discharged! Still waiting for daddy to get here to pick us up, but I am sure they will have the paperwork done by the time they get here.

We also have a date for the Glenn...March 8th. A week from tomorrow. I will write more about that later, but yeah...I am scared!


  1. My heart goes out to you... I know how scary it is when you get the "plan" set in stone for the next surgery. Aly had such a great experience with the Glenn and we were home 5 days later. Sending prayers your way that Hope will have a similar experience.

    Heart hugs!!!

  2. Wow! A date scheduled! I know you're scared, but Lauren had a great experience with the Glenn, too, and she also left 5 days later. She has continued to improve so much and is such a happy, energetic child, strangers never know about the HLHS. It just goes to show how far they can get. Our biggest problem with the Glenn was entertaining her in the crib! She got so bored and we got so tired of entertaining her all day! Just make sure they keep Hope on medication for the headaches. She will get those after the Glenn and it will make her VERY cranky. We felt the doctors didn't stay on the ball enough with the pain medication and we had to ask them to give it to Lauren because it was 1 AM and she wouldn't sleep unless I held her and I was exhausted! She slept so much better after she got ibuprofen and I got several hours of sleep, too. Other than those two issues, it was smooth sailing! Good luck!

  3. Glad to hear your getting a nap! I love you ALL!!

  4. Our thoughts and prayers are with Hope as she emarks on the next stage. I know it is hard to go through another surgery, but the Glenn is much easier than the Norwood! Colin was in for one week, no feeding tube! The first two days were hard, you could tell he was in pain and very cranky! I had to hold me to calm him down. But by day three he was up and playing, happy, with NO clue what happened!
    Life after the Glenn is amazing and worth that horrible wait in the hospital. But all that still doesn't make it any easier to hand hope over on March 8. I pray for the strength for you and your family to have to hand her over again!

  5. Praying for all of you as you wait to go home and anticipate her upcoming surgery!

    Glad that she stabilized after her cath and that you guys will get to enjoy some time together at home! {{{HUG}}}

    Stef, Ryan, Wyatt and Logan

  6. Wow! Looks like we're in the same boat with our kiddos! Chase just had his heart cath on Thursday and we were just discharged yesterday (Sunday). He had to stay on o2 to keep his sats up too. His Glenn is scheduled for Wednesday! It's so hard right now but I know our precious heart babies will be much stronger after their surgeries. Looking forward to following Hope's journey over the next few weeks! We'll be praying for you, your sweet girl and your family!

    God bless!

  7. Hi, sorry I haven't left you any comments but that doesn't mean we have not been thinking of you guys and praying. I am glad she is home and her next surgery has been scheduled. I could only imagine how scared you are. Remember Hope is a little fighter, she will be fine. It is not going to be an easy thing to go through but know that I am there with you in spirit. Please give Hope and big hug and kiss for me. Praying and thinking of you. Take care, if you need to talk just give me a call.

  8. I would be lying if I said I wasn't jealous that you have a daughter that is alive and fighting...but I am also so happy to hear that this defect can be beaten as Hope is showing us all. I will keep her (and you) in my prayers as her next surgery approaches. Treasure the moments of today and try not to worry about tomorrow. God is our strength and I pray that His peace will fill you in the days to come.

  9. Glad you made it home. Will be praying for Hope and the upcoming Glenn. Take care. ~Angie Montgomery