Accepting Intervention

Arrived this morning to find Cora still resting peacefully.  Yesterday was a hard day for her and much time was spent holding her hand and tapping her with the mallet to ease her breathing and get the mucus to come out of her lungs.  By three in the afternoon my dad and the other kids had traveled to see Cora and had given her all the kisses she could handle.  It was a long day for her.  Toward the evening Cora was terribly restless and acting like she was in pain.  Cora shows this by rolling from side to side and crying.  The nurse and I at first thought she was hungry because when we would wet her mouth with the sponge and sugar water she would suck it like it was the best tasting lollipop in the world.  After two hours of Cora being distressed she was given more morphine.  Last time they weaned Cora to quickly off the morphine and it resulted in the same behavior from Cora.  Once the pain meds were given Cora fell asleep and at one point was dreaming and even smiled a little.  It was so good to see that little smile.

This morning I was told that the doctors had rounded and were very happy with Cora's progress.  She is no longer on heart meds, only pain meds and they were going to move her to a moderate care room.  I left the unit to update the log and get some breakfast.  When I left they were removing one of the chest tubes (two still remain due to continued bleeding and drainage) and the Foley catheter was also being removed.  Around noon Cora will get to eat some formula by mouth in the hope that she will keep it down and will be able to keep feeding.

Despite the fact that Cora has had to endure two major open heart operations in the past two months, I have learned that there is God's hand working in all aspects of Cora's life.  Without having another bout of heart failure and needing this second operation, the posterior hole in her heart would have not been found.  Without that hole being found Cora would have again, at some point, possibly been suffering from heart failure.  Dr Bove said he was so glad he had found the hole that wasn't showing up on the Echo's and that the little hole had played a part in all of this was able to be repaired.  I ask you this.....is it a coincidence that Dr. Bove found a hole that was not visible in Cora's smaller heart at a younger age or divine intervention?

I have learned to accept many things during this journey.  It is easier to look back at the past two months and see how things have been going down a path that has been of a divine choosing.  Cora has been traveling this path with acceptance and no judgements.  I am learning how to do this.  I am learning to look for the divine intervention and remain in the optimistic outlook.  I am finding that my faith and acceptance is increasing and growing while I travel this journey.  I am eternally grateful that my hand holds one with a "Palmar's crease" during this walk.

Nov. 15, 2011 / Cora in PCTU

Nov. 15, 2011 / GG and Cora Jean

S - Day

This morning had us up at 5am and checking in at 6am for Cora's surgery.  Despite the fact that she hadn't eaten since 10pm last night, she was her usual happy and smiley self.  Until the anethesiologist took her from me to carry her to surgery.  At that point she grasp her little hands tightly together and tried to curl herself in a ball, squeezed her eyes shut and started to cry.  It absolutely tore me apart.  It was amazingly difficult to walk away, the only comfort was knowing that she was in great hands.  Then it was to the fifth floor and the waiting room outside the PCTU/POD A area.

9:42 am- the floor nurse came out and told me that Cora was on bypass and Dr. Bove was preparing to open the heart for surgery.  I said a huge prayer.

10:30am - the floor nurse came and told me the surgery was done and that Dr. Bove would be out to talk with me.  She told me they were able to repair the damage without a mechanical valve.  I praised creator.

11:15 am - Dr Bove came and talked to me about the surgery.  He was able to repair the valve and even sutured it slightly different.  While he was repairing the valve he found a posterior hole and repaired this as well.  He did not see the hole in the initial surgery.  He was definitely able to tell where the sutures had let go.  He is very optimistic and said the prognosis looks really good.  I hugged the internationally renowned Dr. Bove.

12:45 pm - I finally got to see my little button.  She looked good and her hands and feet were once again warm to the touch and pink.  Instead of one chest tube, she has three this time.  It was explained to me that there is usually more bleeding with a second surgery because of all the scar tissue.  Cora was having a difficult time with her blood pressure.  She was given some blood and also hydrated with a bolus of liquid.  This seemed to help, but she was restless.  So they increased the morphine and it helped her to relax.  Although on the ventilator, it was nice to see Cora breathing at a slower rate, rather then her 60 - 70 panting breaths in a minute.  She looks so destressed even after such an invasive surgery.

The rest of the afternoon was spent peeking in on her and softly touching her hand and marveling at the miracle of our modern science.  Being that Cora has Down syndrome some of the medicines work different with her.  They had to get the restraints again because the little bugger was trying to grab her pacer wires, IV lines and various other things within reach of her little fingers.  The night nurse gave her a dose of a different sedative and Cora finally gave up and is resting peacefully.

So after a kiss goodnight and a promise to visit her in a few hours I left my little button in the very capable hands of the PTCU nurse with the promise to keep my cell phone right next to me and her promise to call me if there is the least little change.

Cora has done well for the first 12 hours after surgery.  As far as S-Days go, this has been a "sensational surgery" day.

The waiting game

Well testing is done and the last two days have been spent just hugging and cuddling with Cora. The testing on Friday went as planned and Cora endured it like the trooper she has been all along. She started the fasting at 6am and we were in x ray by 9am. I dreaded the pig-o-stat more than she did. Cora was strapped into it with her arms in the air, the plastic strap under her chin and her legs hanging, and smiled the whole time. I am continually amazed and awed by the open love and happiness this daughter shows to those around her. Once that was done she was given the sedation for the echo-cardiogram and the EKG. This time the sedation hit her pretty hard. I don't know if it because she is weaker now than she has been in the past, but she was groggy and floppy all day long. After that testing was done one of the Cardiologist from the team that will be operating on her came and talked with me about what to expect.

The whole team is pretty optimistic about Dr. Bove being able to do the repair. Although they did again talk to me about the artificial valve being a possibility. I am praying this is not the choice that is presented to Dr. Bove when he does the surgery, for if he has to do a mechanical valve that means several operations in the future for Cora. During the Echo they found the valve had prolapsed and there was a cleft of some kind. That's all I could gather from the discussion and really that's all I wanted to hear.

I again say that if Cora has to be anywhere I am very glad it is here at this hospital. The University of Michigan Medical Center is one of the largest concentrations of medical education, research and treatment facilities in the world. Located on 82 acres this 30 building complex includes a premier medical school and world-renowned, advanced patient care facilities. The Med-Inn is located within the walls of the facility and makes it very easy to see Cora and be within pager reach if I am needed.

Tomorrow fast approaches and I find the anxiety grows as the hours of today slip away. I watch Cora sleep and I silently pray for the patience, the understanding and the faith that I will need in the early morning hours tomorrow. Just like Cora, I truly need to take one moment at a time tomorrow morning and have faith that whatever happens it is for Cora's greater purpose and not necessarily for my understanding.

We've arrived

November 10, 2011
The six hour drive to Ann Arbor was made during alternating sunshine, snow, rain, sleet, hail and high winds.  We arrived safe and in time to check in for our reserved room.  Cora was so happy to be out of that car seat and able to roll around on the bed and stretch her legs.  She settled right in and was ready for tickling and playing.  My three travel companions, my daughter Emily (17), Cora and my mom, were a little giddy after the road trip, so they were more than happy to play  while I unpacked Cora's playpen and toys.

 < three silly travelers

 < the almost serious 'we've arrived' photo

It is a relief and a sad reality that I knew where to park, where to go, the shortcuts and the how to's of the way things work and what I needed to do for Cora's workup tomorrow morning. It was definitely a mixed feeling of joy that I and Cora were recognized by many of the people here and a feeling of sadness that we were recognized.  Cora was greeted with a great deal of smiles and the kind of well wishes that usually started with , "Oh, Cora.  You're back.  You look so happy but I wish we didn't have to see you again."  A greeting that I totally agreed with.

< room view

So, despite the fact that we are here again for another major surgery for Cora Jean, I wouldn't pick another place to be with her.  There is a sense of relief for me because I know that if Cora has another sudden medical crisis I am in the perfect place for it to happen.  At home there is always the worry that she will take a bad turn and I will again have to rush her here.  Strange how I recognize a sense of relief during a stressful time. 

So it seems only natural that I end today's blog with another milestone for Cora that takes place in the Children's hospital that she has spent so much of her first seven months of life in.....She was able to hold her bottle by herself for a feeding.(first time for her to accomplish this)  Go Cora Jean, Go Cora Jean, yeah Cora Jean!

Unexpected Gifts

Whenever I sit here typing this blog I see the little stack of the medical bills that need to be paid.  I have been so worried about these bills that are starting to come in , as well as other normal household bills, that I haven't been sleeping very well. I am definately concerned with getting enough funds together to take Cora to Ann Arbor again while still meeting my other obligations. It has gotten to the point where I sing Cora to sleep and in the song I make up silly words about the angels coming and paying our bills.  Then this happened:

One of the local Down syndrome associations found out about Cora's upcoming surgery.  This is the group that helped me so much before Cora was born and sent me tons of information about Down syndrome.  After forwarding the information for Cora's blog, I received an email from them and they informed me that they were sending a monetary gift to help during the upcoming surgery. 

It was such a tremendous relief to hear this news.  Anyone who is a single parent knows the struggle that we face on a daily basis to support our children in the ways they need it.  Emotionally, spiritually, financially, etc. Let me just clarify that being a single parent with Cora is not a burden for I enjoy her presence and the other kids enjoy their sister.  Yet, it is a tremendous financial strain becuase of all of Cora's medical needs.  I am not one to tell people about the stress I am facing or the financial burden I am under because I just feel like it is my responsibility and not anyone elses, and truthfully noone wants to hear about that.

Then I receive the email that this group was sending me a monetary gift to help with Cora's surgery and my stay during that time at Ann Arbor.  To receive this gift, so freely given, brought tears to my eyes. A gift given with understanding and nothing expected in return. A kind of gift that touches the heart as much as it eases the financial strain.  A coincidence?  Nope, I believe it was divine intervention.

The first secret

I watch Cora playing in her playpen and I am amazed at how far she has come.  I see the NG tube in her nose and watch her try to pull it out again, despite the fact that I have been taught by her how I need to tape it to keep her from doing this. I see her grab different toys and rattle them and try to get them to her mouth.  I watch and listen as she talks her baby garble words and see how successful she has become at moving her tongue to make different sounds.

To Cora, life is an opportunity.  She doesn't care that she has to nap every few minutes because she has so little energy.  She doesn't mind that her heart isn't beating or working like it is suppose too. She has the trust that when she reaches her hand alongside her body that hand will find a toy to play with.  She knows where I am and searches for me.  When she finds me she smiles and laughs, because she knew I would be there.

I watch her and I am reminded of that line by the writer Robert Frost were he says, "I always entertain great hopes".  Cora is like this in so many ways.  People are always commenting on how   quiet and happy she seems.  I agree.  Cora has the ability to be so peaceful, and many times lately when I hold her in my arms and cry at the injustice of our life and events right now, she will look at me as if she carries the wisdom of centuries and hold my gaze.  Those little blue eyes seem to be telling me so much and, despite this sounding strange to some, as she holds my stare and gazes into my eyes, I would swear I can hear her speaking to my soul. 

This little child is such a blessing.  She has a mind that is open to everything and attached to nothing.  She knows the first secret in wisdom, without having to be taught what that is. What an absolute gift in today's world. 

Like a willow tree

I have learned during this experience with Cora that I have become a willow tree.  Not another kind of tree, for an Oak tree is very strong, but it is not flexible.  If a strong wind comes up the Oak tree fights against it. If a terrible storm comes upon it with a great amount of wind, the Oak tree will likely break instead of bend. 

Me, I am like a willow tree.  I am like Cora.  She just goes with the flow.  She smiles even when she is at her sickest.  She wiggles and flexes even when the nurses or doctors are having to cause her pain to make her better.  She cries against the injustice of it, and when the test or the medicine is over, she smiles and wiggles her toes.  Cora is happy to be here and is present in the moment.  Cora adjusts to the situation and bends freely.

Cora is teaching me how to be that willow tree.  That no matter what comes next, no matter what the weather is like on any given day of our journey, I must be that willow tree that bends and sways and curves and moves with the flow of the storm.  If I am like an Oak tree it is likely that I could break under the pressure of the storm or the suddenness of a turn of events on our journey.  Yet, if I am and if I become a willow tree, I will weather the storm, I will bend and flex with the next treatment or surgery that Cora needs, and I will survive the storm.  Maybe without a few leaves, but intact and smiling.

For I have learned a great lesson from my daughter.  If I am flexible I will bend with changes that might come our way.  If I am not flexible, I will break.  So, yes, I am a willow tree.....just like Cora Jean.