Wednesday, September 30, 2009

Hope is out of surgery

and from everything they have told us, her surgery went as expected.  We have witnessed yet another miracle and know that God is answering our prayers and the prayers of everyone else.  Thank you so much for your thoughts and prayers was a long, nervous, scary, and now good ending day.  I wrote down everything from the time we got to the hospital until we left:

Pictures of Hope before surgery

6:45 am - Jerry and I got to the hospital so we could spend time with Hope before they took her for surgery.  She was wide awake and looked at us with her beautiful blue eyes.  She seemed to be saying "trust me I will be fine".  We met Kim...the surgical nurse that would be calling us for updates when Hope went back for surgery.  We also met Debbie who was a nurse that would be in the operating room with Hope and all of the doctors.  She was extremely nice and put our minds at ease.

Jerry and I went to the Ronald McDonald Family Lounge to wait for updates.

8:30 am - The anesthesia team came and took Hope to the operating room.  We gave her lots of hugs and kisses and cried when they wheeled her through the doors of the operating room.

10:15 am - They are ready to start the incision.  They put in a new central line and they had to do some preparation for the Sano Shunt.  The Sano Shunt will connect the right ventricle to the pulmonary artery.  She is stable and doing fine.

11:20 am - She is on the heart lung machine and they are beginning the repair.  Nothing unusual or unexpected has happened.

12:15 pm - They are repairing her aortic arch.  After that is done they will work on the Sano Shunt and then take her off of the heart lung machine.  She is still doing fine and nothing unexpected has happened.

My dad arrived from Kentucky - it was a long drive for him and he left this morning at 1:00 am...what a trooper!  We really appreciate the support and know it is hard on everyone.

1:20 pm - They finished the repair and now need to get her off the heart lung machine.  They will do an echo and take a look at everything they have done.  It will take at least another two hours to clean everything up and make sure there is no bleeding.

My mom, Marilyn, and the kids all came to the hospital.  They were planning a day at the Children's Museum, but enjoyed the Family Lounge so much they decided to spend the day with us.

2:10 pm - Hope is off the heart lung machine.  The echo looks good.  She doesn't know whehter or not they will leave the sternum open for heart swelling.  She will know by the next update.

3:15 pm - They will be leaving the sternum open and there will be a clear covering over her chest.  She will also have drainage tubes that will help her get rid of the excess fluid.  It will be at least another hour before she is finished.

John (my brother) arrived along with Big Jerry and Rosie (Jerry's mom and dad).   I know how hard it is for everyone to get to the hospital and spend long days with us and we really appreciate all of the support we received today!

4:30 pm - They are finishing up with the dressing and she should be back in PICU in half an hour.  We can see her in about an hour.  Kim will call when we are able to see her.

Ron made it to the hospital to lend his support.  Paul loves spending time with Ron, so it took a load off everyone having to run around after him.  Dad put Paul to sleep and mom spent time with him while we all went down to grab a bite to eat.

5:00 pm - Dr. Mavroudis came to see us and tell us about how the surgery went.  He told us that the surgery went as he expected and that we may need to do a balloon procedure in the future to open her super vena cava.  He told us this may or may not be necessary, but they would be looking at it on the future echos.

6:00 pm - We were told we could see Hope.  The whole family was able to go in and see her, but we could only go in 2-3 at a time.  I have seen a lot of pictures and I basically knew what to expect, but I can honestly say that it was harder than I ever imagined to see my sweet little girl all puffy with her heart ust beating under a basically see-through bandage.  I don't think anything could prepare a parent too see their little baby like that.  I know it saved her life, but my heart hurt so much to think of everything she has gone through in her young life.

Pictures of Hope after surgery:


  1. I was thinking of your family all day. Exactly 5 months ago today Fiona had her heart surgery. It is so hard to see your baby so sick and not be able to hold them. Hope is a strong little girl and a miracle. I'm so glad to hear that surgery went well. Sending many prayers!

  2. I am so happy to hear that Hope is doing well. My Mom is a member of the HLHS group in Cleveland and I have heard of Hope before. My daughter Lauren was born 10/24/08 and had her 1st surgery in Cincinnati 10/28/08. She had her second surgery April 30th, also in Cincinnati. She is an active 11 month old now and we are so happy to have her with us. Feel free to contact me anytime for support. You have a long battle ahead of you and the more you know the easier it will be. It will be long and frustrating at times, but the rewards will be so great! Our thoughts and prayers are with you. Jessica Makuh,

  3. Hi Paula,

    The strength you have is amazing and it gives Tracy and I alot of Hope. This definitely brought a few tears to my eyes, my heart aches for you guys. I'll be praying every day for the rest of my life, you can betcha you and Hope and your family will be in them.

  4. So glad Hope is doing well. Know how scary this is. Praying for a speedy and uneventful recovery, losing lines and meds so you can get to hold your baby and take her home where she belongs.

  5. Oh I have tears rolling down my face reliving those moments with my Ethin. If you need anything pleas just ask me I will do what I can to help. God does hear our prayers and I am glad to hear Hope is doing well if it is OK with you I would like to add you guys to our heart family list on our page. Many heart Hugs, Jessica mommy to CHD Angel Ethin

  6. Such a little fighter! I know it's so hard to see her like that, but she is a brave warrior and she will pull through this. Many prayers being said for Hope and your family.
    ~Mary and Drew

  7. I am so happy the surgery went just as planned! I was checking often yesterday for updates, anxiously waiting for news. Now, I will pray for a speedy and easy recovering for her and that she will be home with you before you know it! It is so great that you didn't give up and insisted on a second opinion!

  8. Paula, I'm sending prayers and hugs your way and will pray that Hope continues to get stronger everyday. She is a living miracle. I just caught up reading your blog this morning. Thank you for sharing Hope's journey with everyone. Your whole family will be in my thoughs and prayers.

  9. I am so thankful the surgery went well. Praying for you this morning. She is a precious girl and such a fighter. I hope you can take a deep breath this morning and face another day. All of you are so loved.

  10. Paula, you're one amazing mamma to have documented everything like you did. It takes tremendous strengths! I know it's hard to have seen your little Hope coming back in this state, you're right, no parent can be prepared enough to see this. It's harder because it's your baby. We have to thank God with everything He has done for us and continue doing for us. I pray that Hope recovers well enough to go home real soon. I pray for ongoing strengths for you and your family.

  11. Wow, what a day! Glad that it went as they hoped. You have the first major hurdle behind you, praying for a smooth recovery. Glad to have found your blog...and thanks for your sweet comments on mine!

  12. Paula and Jerry,
    I'm praying for baby Hope. I tell everyone to pray for her. She is a true miracle baby! I will keep praying for her recovery and that God will help you through this difficult time. Hope is a fighter! She is going make it through all of this.
    Cathy Fatica

  13. I am so happy to hear everything has gone so well. Hope is really a miracle baby and you are trully blessed. I cried as I read your post because I could only imagine what you and your family are going through but more than anything, Hope. She is so tiny and yet she continues to prove to everyone that there is nothing that can stop her from showing her love for you. You did such an amazing job all these months, carrying for her in your belly and it has all paid off. I am so so happy for you, you have no idea how much I have thought and prayed for you and Hope. I will continue to pray so that she may come home soon and you can finally have some peace in your heart knowing she is finally home safe with you. God bless you always!!!

    Sending hugs your way...

  14. Paula and Jerry,
    I am so glad that Hope's surgery went well. I have been thinking and praying for her and you. We are planning on visiting Sarah this weekend and I hope to stop in for a short visit. I will call first to make sure you guys are up to it. We will continue to pray for Hope's recovery. Love you guys - Beth