Fontan Day 3: Operation Day Wednesday
9:30 a.m. We got our wake-up call bright and early this morning at 4 a.m., and jumped out of bed. Mary Clare was her usual “non-morning” self, so I just left her in her purple heart night gown and wrapped her up in her blanket as we loaded up once again. We arrived at surgical check-in at 5:30. After vitals check, she was given pink Versed. This is an oral drug that is given to children to make the “hand off” easier. By 6, she was loopy eyed and playing Ariel with the nurses. They placed a pink flower surgical cap on her head and she asked me to go with her into surgery. When I told her I’d see her in a few minutes, she smiled and took off with the nurse. As we left the holding area, I shot a glance through the double doors and saw about 7 blue scrubbed people walking with her. This image is burned into my memory. For some reason, it’s comforting. I know everyone that is here, is on our side. I was assured this when I was walking to get Starbucks downstairs, I saw a familiar face and made small talk. The doc beside my friend, asked me if I was the mom of the cute blonde that just went back. He explained that he, having three daughters of his own, was singing Sleeping Beauty songs with her. When he called her Sleeping Beauty, she quickly corrected him, “I’m Ariel!” He said they hated to put her to sleep because she was so much fun. They assured me that once she was back “there” she would be given something by mask to breathe and fall asleep. She will not feel the sticks and pain of a central IV in her neck and several other PICC lines, peripheral lines, etc. Dr. Bradley began his work around 8 and we will be paged with updates on the hour. By now she should be on heart-lung bypass.
10:20 a.m. Just received our first page. Mary Clare is on heart/lung bypass and Dr. Bradley is “working away.” He explained yesterday that it will take a while to actually begin working on her heart. He must get through scar tissue from previous surgeries and procedures. I am blown away by the support we are feeling. So many people are wearing pink and sending Pinkalicious thoughts and prayers our way. We certainly have a loved little girl. We are so humbled and so very, very blessed. Thanks be to God.
1:20 Just received a page from PCICU. Dr. Bradley is finished and she is off of heart/lung bypass. It took a while to control bleeding, which is typical, and everything seems to be a bit ahead of schedule. Dr. Bradley will be coming into PCICU waiting room to talk to us soon. I’m anxious to see my baby girl with her brand new “scarf” (scar) She may not be awake/extubated today, but still, I’m ready to see her little face. We cannot believe all of the love and support we have received. What an amazing feeling knowing how many people are loving and praying for our sweet Pinkalicious Ariel. We are so thankful and blessed beyond measure.
3:40 Mel and I were able to go back into PCICU to see Mary Clare. We were only there for a few minutes before she started blinking and moving a bit. She is still heavily sedated and intubated, so they are certainly not ready for her to wake up. We tried to keep quiet as the nurse explained all of the meds they were administering. Somehow, she sensed that we were there. They sent us away. It broke my heart not to be able to hold her or talk to her. I feel like a weight has been lifted off of my shoulders, however, I know the long road to recovery has only begun.
7:47 p.m. It has been a long afternoon. The early part of the day seemed to fly by, for some reason, but this afternoon has been difficult. Mel and I went back to see Mary Clare again around 5:30 and once again, we were asked not to speak loudly, as she was responding to our voices. She was trying her hardest to fight over the ventilator, which is not what they wanted. They ran CPAP trials to determine if she could come off of the vent, but she wasn’t quite ready to breathe on her own. My body ached to hold her, to touch her. My mind is telling me I have to wait, to keep quiet, not to touch her, but I can almost hear my heart pounding, wanting so badly to grab her, smell her sweet scent and kiss her cheeks.
No mother wants to see her baby hurting. It is truly the most difficult part of this journey. Seeing her wrapped in tubes and lines breaks my heart. She has her wall of IV drips and bags behind her and has three large drain tubes peeking from under her covers. She has a central line in her neck and several IVs in her arms and legs. Her pacing wires are in her chest and, of course, the lines in her nose and her little taped mouth with her vent are very difficult to see on her perfect little face. I did notice that her little toes are not their usual blue. They are actually pinkish! She will be thrilled. Her toenails and fingernails are a pale pink.! (Still somewhat purplish, but not her typical dark gray blue!) It is amazing. Her stats were already in the low 90’s-upper 80’s! Still under all of those lines and wires is my little Pinkalicious Ariel! I can’t wait to see her open her big brown eyes.
Right now, I’m back in the waiting room. Mel is having a bite to eat with his family. They feel like she’s ready to be extubated, so they asked me to step out. Her nurse said she was doing beautifully, and once they extubate her, she’ll be breathing on her own! Her nurse also told me that she asked Mary Clare if she was in pain, and MC shook her head no. She also pointed to her tube, indicating that she wanted it out! That’s my girl, letting everyone know exactly what she wants.
I am utterly humbled by the outpouring of love and support and prayers we have received. Nothing I can ever say will be enough to express our gratitude. God is holding us and carrying us through this journey. It is truly a surreal experience. My heart is so full.
10:30 Mary Clare is extubated and sleeping. Her night shift nurse is amazing and said she was going to make sure Mary Clare would get a peaceful and painless night’s sleep, which is exactly what I was hoping to hear! Mary Clare was vaguely awake for a few moments after she was extubated. I was talking to the nurse about getting a paci to have for later and Mary Clare said, “Green Pappi” telling me to be sure to get her her favorite, a green one. Her nurse also said that immediately after extubation, my MC was telling them she did not like the tube. Apparently, it’s pretty rare that a patient talks so soon after a vent tube is removed. “She’s a talker, I can tell” was her nurse’s response. I can’t wait to hear that voice again tomorrow! Thanks be to God!
Look, pink lips!
34 Comments
Bethany on March 30th, 2011
Praying for yall, Kerri!
Jenny on March 30th, 2011
Praying for Mary Clare!! ((hugs)))
Misty on March 30th, 2011
Constantly praying and checking on everything! Love you!
katie on March 30th, 2011
Praying for Mary Clare! I’m going to be glued to the computer off and on today, checking on her progress (and yours). Thinking of you and your sweet pinkalicious. Lots of love being sent your way today!!!
Love,
Katie & Maddie
Happy Heart on March 30th, 2011
PS I will be wearing pink in Georgia!
Alli on March 30th, 2011
We are thinking about you guys and praying in Idaho today! I hope that your updates come quickly and that MC sails through surgery today with no complications!
jan tompkins on March 30th, 2011
Praying for all of you today. Ann will be on nights tonight and tomorrow. Hopefully she will see your little one. Love
Tammy Willis on March 30th, 2011
Oh MY! I am checking on you guys off and on today. Just noticed as I sit at my desk – I am wearing PINK today! Sit back – pray and get you some rest because you will need your energy. I tried to stay with our son 24/7 and exhausted myself to nausea on day 4. Remember to take your breaks!
Lisa Johnson on March 30th, 2011
Praying for your sweet girl today. You are such a beautiful family. We aren’t too far behind you with the Fontan and I know the feeling of waiting for your precious baby to get through the surgery. Prayers for peace, comfort, and strength. Much Love!
Andrea on March 30th, 2011
Mary Clare and you all are in our prayers. I just checked in and the twitter says “off bypass!” I am SO happy things are going great thus far!! Praying for a smooth recovery!!
Tonya Rainey on March 30th, 2011
Praying and waiting with your family.
The Rainey’s
Kate on March 30th, 2011
tears are flowing but my heart is smiling.. I love you Mary Clare and I can’t wait to see you sweet girl!
christiab on March 30th, 2011
We are thinking of you and praying for all of you! Even macho Jacob wore an ensemble of pink silly bands to school today! I know all of THA, FBC, and Miss Susan’s are pinkalicious today! How special “Baby Mary Clare” and “McCanCan” are to all the children, parents, and teachers they have touched at these places! We are sending out praises as we continue to hear good reports!
rion on March 30th, 2011
We are wearing pink on Hilton Head Island and praying for Mary Clare, the doctors and your WHOLE family!
jfiiiinr;ls on March 30th, 2011
I wore pink today for Mary Clare! She is in me, my family, amd and schools thougths and prayers!
Dori White on March 30th, 2011
I have been sitting here reading all of your post to my girls and I think there is not a dry eye in the room. I admire you so with your wirtting and can’t wait to see you put a book out! We are wearing our pink and sending up prayers!!! We love you all, please keep on posting so we can see each and every update. Even though we are not able to be with you, by reading we feel like we are on this journey with you. “Hurry home Hartsville’s little pinkalicious”
Smiley on March 30th, 2011
Pennington family, You all are in my thoughts and prayers! I hope everything goes good with Mary Claire!
Ashleyhowle on March 30th, 2011
Kerri … I just wanted you to know that I am praying for Mary Clare and your entire family. You are such an inspiration to us all, and I know that Mary Clare will read back on these posts one day and be so proud of her mother. Your love and passion for your entire family is so evident through your writing. You truly have a gift.
Hope Mary clare’s recovery goes smoothly!
kate on March 30th, 2011
kerri your words are wonderful… you are an inspiration to all…. you are always so brave and strong and provide such support for others.. i love you so very much..
knowing that our baby girl had done so well – is a blessing and i couldn’t be happier..
it just breaks my heart – hearing that she hears your voice and wants to get up so badly.. you’re an amazing mother and your love will help MC during this long recovery..
Tonya Hall on March 30th, 2011
Praying for you all!!! Stay strong and brave for your sweet little angel! You are an amazing mom and such an inspiration to others!
Lee Wilkes on March 30th, 2011
praying for you as the recovery journey begins! you are SO strong and so is MC! she gets it from her mommy! love you much!
Happy Heart on March 30th, 2011
Prayers continue for all of you! We continue to check in for the latest updates. We are trusting the Lord to provide everything you need. Thanks so much for the updates! Praise God for those little pinkish toes! What a beautiful sight!!
Heart Hugs,
Jeannie
Psalm 28:7 The Lord is my strength and my shield; My heart trusts in Him and I am helped.
Brandi on March 30th, 2011
What a precious picture!!! Hugs to you all!!
Beverley Dodson on March 30th, 2011
I find it amazing that you are able to reach out to keep all of us informed…making us feel better when it is you who needs the love. Thank you for all the posts!
Melissa Smith on March 31st, 2011
Kerri – I have been following your blog for some time now and although I haven’t written before I couldn’t help but write this time after reading your post. Thinking this will be us and our boy in less than a year. You captured each moment. So tender, so real. I felt like I was back at our Norwood and Glenn. Mary Clare is such a strong girl, with strong parents as her guide. I’m so happy to read your reports and updates as it give us the hope we need as well. Thanks for taking the time to not only allow us into your private life, but to give inspiration to others. Hugs from Illinois.
Melissa – heart mom to Caden HLHS 2 years.
Jenny on March 31st, 2011
Great news! I’m so happy that she is doing so well!
Kimberly on March 31st, 2011
So happy to hear that all went well with her surgery! We will continue to pray for all of you! Praying, praying, praying!!!
Kate on March 31st, 2011
MC you look like you have on PINK lipstick!!! I love those beautiful PINK lips!!! I’m so happy and so excited to see you!!!
Chrissie on March 31st, 2011
Wow look at those lips!!!! So pink!!!! How exciting and gorgeous!!
Jill McElveen on March 31st, 2011
She looks absolutely wonderful Kerri! Faithfully praying for a quick recovery! Keep posting…your writings are moving!
Carol Spears on March 31st, 2011
So happy that your daughter’s surgery went good. I’ll keep praying that she have a quick and speedy recovery. God bless her and your family!
Linda on March 31st, 2011
I look up to you all. You are all blessings. I am so delighted that surgery went well. You are always in my prayers. May God bless you and your doctors.
Sissy - aka Sherrill on March 30th, 2011
Kate is keeping me posted too. Our pinkalicous is going to be perfect in every way!