Wonders of today

Yesterday found Cora and I cooking our late Thanksgiving family dinner. We opted for roast beef and stuffing rather than the traditional turkey dinner.  Thought this was required since we didn't have the standard Thanksgiving events. 

Today Cora and I spent the whole day resting and we didn't get out of our pajamas.  It was a wonderful day of down time for me (no appointments to race too) and a wonderful day of healing for Cora.  Her appetite is slowly coming back and she seems less in pain today.

The amount of medicine that she takes three times a day is sometimes overwhelming.  I read the list three or four times when I am measuring the medicines for fear that I won't remember the right dose.   I imagine it is because I am so tired and drained from the past two weeks.  Yet, second guessing myself is not something I usually do.

Cora looks good today, but one of her hands is swollen more than the other.  Kind of wondering about that, not worried though.  The body has a way of healing itself and ridding itself of the foreign toxins that come from surgery.  Maybe this is just Cora's way of healing.

When Cora was napping today I decided to look through a book of inspiring quotes.  I found one by Winston Churchill that seems to have stuck with me.  It said, "Never, never, never give up!"  The wonders of today come with the inspiration that Cora never gives up and she is teaching her mama how to achieve that same attitude. And she is teaching me with much grace and dignity.

Destination....Healing

Friday, November 25, 2011 & Saturday, November 26, 2001

Cora is doing well.  The doctors put her back on one of her original diuretics and it made all the difference in the world.  We went home with four medicines given three times a day....but we got to go  home.  That is the greatest gift I could have been given for this after Thanksgiving day.

With a final xray and the all clear and Cora peeing in her diapers like she has just gone in a swimming pool, we were sent on our way.  I gave hugs to all the wonderful nurses and Cora smiled at everyone we walked by in the hallway.

 diuretics finally working...waiting for discharge

It is such a mixed blessings when you leave the hospital because I have spent the last two weeks with other parents and shared stories and struggles with them.  We become instantly attached due to our commonalities and predicaments.  Giving hugs to some of the moms brought me to tears.  I was happy I was leaving with Cora in my arms and saddened that some of them wouldn't be leaving anytime soon. 

 dressed for the ride home

The ride home was hard for Cora.  Spending that much time strapped into her carseat is painful.  She did her best and didn't really start to complain until the last 30 minutes of our seven hour journey home.  (We were slowed by an accident on I-75).  That last 30 minutes saw me and her both crying ....her from pain and me from the inability to console her.  Once we arrived home though, I laid her in her playpen and she stretched and wiggled and smiled.  Then, sleep overcame her and she rested peacefully.  My dad, Kelsey, Phoenix and Melissa were all so happy to see her and they kept checking on her and just looking at her and marveling at how much better her coloring is since the surgery.

Yes, she is a marvelous gift and a wondrous work in progress. 

We still have many doctor visits to come in the next few weeks.  But for today, Cora's heart is doing its job despite the leaks and that is all I am concerned with.  Today is good.

I would say that for Cora Jean Head's first Thanksgiving she threw herself the best  party ever.  She got a fixed heart and more energy and she gets another day to thrive.  I am incredibly thankful for this and am so glad I was invited to the party.

 home at last and playing too much to stay still for the camera.

Thanks given

Cora is still in the general care and had a really hard day.   She was restless all night and by this morning she was not breathing right and just not being her usual self.  The smiles of yesterday were gone and in their place were frowns and restlessness .  The nurses and the Doctor also noticed the change in Cora and were concerned.  Off to x-ray Cora went to make sure there was not anything going on with her lungs.

Pain meds were given, and other meds were given and no change.  By 1pm the x-rays were back and they were clear.  The mystery continued as everyone tried to reason what was going on with Cora.  Her heart sounded good so they weren't panicking.  I, on the other hand, saw this behavior before in Cora and it has been during her times of heart failure. 

Brenda (high school chum who works here) stopped by to visit with us today and it was a special time as it took my mind off of worry and into relaxation and laughter.  It is always good to see friends that are supportive of Cora and who enjoy Cora's presence and love sharing this journey with Cora.

Later this afternoon it was noticed that Cora was not "peeing" the amount that she should be.  So diuretics were increased and since her blood pressure was still all over the board the Captiprol was also increased.  The idea that we were going home today was changed again to staying another night to monitor Cora.

By 6pm she had started "peeing" again and was acting more like herself.  Her breathing was getting better, but now her temperature is on the cool side. 

I never realized before how wonderful it is to have your child "pee" or "pooh" when you are in this situation.  We threw a little dance party in the hallway when Cora finally filled a diaper so much that it looked like she had gone swimming with her diaper on.  Yep, I was smiling and Cora was too.  Silly though we were, it was a great moment. 

We spend another night at Mott Children's Hospital, but truth be told, I am more comfortable staying than taking Cora with all this going on. I'd rather err on the side of caution.

This night will be a continual celebration of "pee" diapers and will be filled with thanks being given every time I have to change one.

Being Chosen

Started the day with an echo-cardiogram. This is standard procedure before discharging the patient after heart surgery. Cora fasted until 8am and then was sedated. She did very well until the ultrasound tech had to push pretty hard on the abdomen to get a under shot of Cora's heart. It was then that Cora came out of a heavy sedation and looked at the tech with an expression that said, “Excuse me, but I am really sore where my chest tubes used to be and that hurts.” The rest of the echo went well and Cora laid quiet enough for her to finish.

When the tech was done she got a paige from Dr. Bove and he wanted another view of Cora's heart. Then it was back to the room and waiting for the news. Cora's discharge meds were already picked up and we were packed and ready to go. After three hours without any news the nurses started to paige the floor doctors to see what was taking so long.

At 4pm the Doctor came in with the news form the echo-cardiogram. Its when he closed the door to the Cora's room that I new it wasn't the best news. While the repair has diminished Cora's regurge, there is already signs that the repair isn't healing quite like it was suppose too. The echo after surgery showed very mild regurge from the repair and equal pressure in the chambers. Today's echo showed “jets of regurge” between the sutures of the repair and an increase to moderate regurge and  unequal pressure in the sides of the heart.

I sat an listened to this man tell me that we are so fortunate to have been able to be able to get some more growth on Cora and more strength on her before, (or if) the repair again lets go and she needs a mechanical valve operation. I heard him tell me that the only option next time is the mechanical valve. I heard him tell me that with luck Cora won't need another operation. Then I heard him tell me that often times children with this kind of repair and these kinds of results do end up coming back for the mechanical valve replacement surgery.

I heard all this....but my heart wasn't listening. My daughter is now on Captiprol again to help with the pumping function of her heart. She will remain on this indefinitely and long term. Again my mind heard this, my mouth asked the right questions and my mind listened to the answers. My heart was crying and my soul was wounded. I wanted so badly to fix this for my daughter and I couldn't.

I unpacked her things and got her set up for staying in the hospital again because they wanted to monitor her for a day or two while she takes the first couple of doses of Captiprol. This medicine can sometimes cause a real drop in blood pressure and they monitor her to make sure she doesn't have this happen. Even though she was on this medicine before the surgery and she tolerated it well, they aren't taking any chances with Cora.

I stood next to her crib and just looked at her. Cora was smiling at me and wiggling her little body. While I watched her, smiled at her and held  back my tears I remembered a moment:

Shortly after getting testing during my pregnancy and having it confirmed that Cora would be born with Down syndrome I stopped in at the Pickford Medical Center to let everyone know about the news. Laurie, a nurse that was working there at the time, took me into one of the exam rooms to talk with me. This is what she said, “Katrina, I know you. You want to take blame for this, you want to own this, you feel responsible. There is nothing that you did or didn't do during this pregnancy to cause Cora to have Down syndrome. It just happens. And you know what else? I believe that God gives these children to mom's that can handle it. You can handle this and anything that comes your way with Cora. You have been chosen to be her parent because God knew you have what it takes to give Cora the kind of life she deserves. He chose you because he knew you would love her no matter what.” By the time she was done talking with me we were both crying.

So here I am , still in the hospital with Cora instead of heading home and I have a huge “aha” moment. As Cora smiles at me and looks at me with those blue eyes that are often filled with ageless wisdom I am filled with happiness and joy at finally understanding I was the chosen mama for this child. It brings me peace during this step of our journey.

Sunday best

Its Sunday and the perfect day for Cora to get to wear her Sunday best.....her smile. 

This morning was another big morning for the little button.  She was all smiles and playing happily despite the fact that she was on a fasting for the sedation the doctor's would use when they removed the chest tubes today.  After seeing me this morning she did start to fuss a little bit. When she didn't think I understood that she was hungry she got a little fussier and started saying my name making the sucking motion.   This made me emotional and filled my heart with such happiness....Cora has been so filled with medicines and tiredness the last few weeks that she had stopped telling me when she was hungry.  To see this again was all I needed to start that tear train rolling.

I opted to have a dose of oxycodine with the percocet for her conscious sedation this morning because of her having such adverse reaction to the morphine.  The Doctor's that were on call this morning have been with Cora the two previous visits and agreed with me that she is not a candidate for morphine.  I tell you, she was a trooper and I was so very proud of this baby girl....she didn't whimper at all through the removal of the chest tubes until they pulled the stitches tight.  Then it was one little yell that ended in a huge pout.  The Doctor's both laughed when they saw that pout and Cora joined in with a huge smile of her own.

Once this was done the nurse and I gave Cora her first after surgery bath and she was unhooked from all the monitors.

So now Cora lies in the crib, full of mischief and play, dressed in a little gown and totally unhooked from all monitors.  Her breathing is normal (45 -50) and her heart rate is great (129) and she is looking pink again.  Despite all the bruising and her still being sore, she is only on Motrin and Tylenol with the oxycodone only as needed. They are still giving her oral Lasix and Aldactone. The nurses  were suppose to move her out of moderate care and into a regular room today but there was not a bed for her. This didn't bother the nurses in moderate care as they are happy that Cora is staying in their ward because she lights up whenever they peek into her bed and say hi.

Cora continues to work her magic even when she isn't 100% herself.  For me, that's the best thing this Sunday had to offer.

Playing with Horsey before chest tubes removed.

Cora talking with Horsey in their secret language

Rainbows and faith

November 19

This makes day five for Cora's stay in the Mott Children's Hospital. Today was definitely a better day for her. She was able to get off her high flow and is on room air and loving the fact that she no longer has a tube stuck in her nose. They decided to just remove the tubing to stop the water that kept flying into her nose and making Cora panic. The respiratory therapist watched her and Cora was breathing well enough to leave the tubing off. Yeah, one more tube gone.

One of Cora's chest tubes was leaking and when she would breathe or cough it would pull air back and forth within the drainage in the tube. So unfortunately, the dressing had to be redone and the all the tape again removed and replaced. Cora's skin is not doing very well with all this and she is bleeding from places that haven't seen surgery, just the war of tape.

Despite all this, she is doing well today. Actually got a few smiles, several “oh-ma's” and some raspberries today.

The Doctors are looking at moving Cora out of moderate care and into a regular room tomorrow . Her chest tubes are suppose to be removed tomorrow as well. I am sure once this happens Cora will do even better in the pain management department. The new formula they put Cora on seems to be working well and the fatty drainage has decreased a great deal. She wouldn't eat it warmed up, but loves it cold and sucks it right down. Cora is nursing from the bottle again with no sweating or panting.

“”Those that believe the storm will pass will see the rainbow before others know the rain has stopped.”” These words kept echoing through my mind as I watched Cora today. By her presence in my life and watching her continue to be undaunted by yet another surgery and various setbacks, she has taught me that even in times of struggle we must believe and have faith. And most times this has to be done blindly and without worrying that the outcome will be what we want it to be. Because the actual outcome is usually better than anything we could have imagined.

No high flow anymore!

 sharing raspberries

A setback

Sorry  Cora and I didn't blog yesterday.  The past two days have been very eventful, and not in a great way.  Yesterday was spent rocking, holding, consoling and begging Cora to feel better and settle.  The took her off the morphine and she was tolerating the Oxycodone, Motrin and Tylenol pretty well.  But when it got to the half hour before a dose of pain medicine Cora would be highly agitated and twisting from side to side.  Completely understandable, yet so hard for me to watch.  As a mama I want to make everything okay for Cora and there was nothing I could do.  When she would look at me with those blue eyes and say her version of "mama" it would make me feel so helpless that I could do nothing to ease her discomfort accept hold her and tell her I loved her and kiss that little forehead of hers.

During all this we did have a fun visit from some of the University of Michigan athletes who volunteer their time to visit the children at the hospital.  These four students were wonderful to talk with and signed a baseball cap for Cora.  I have to give them a shout out on Cora's blog and commend them for volunteering their time.

Finally last night about 11pm she was totally wore out and fell asleep.  She slept through the night and was up at 7am this morning.  As the day progressed Cora's breathing became labored and she started using her chest to pull in her breath and her retractions were back.  At one point her heart was racing at 170 bpm and her breathing was at 67 - 88 bpm.  She had also spiked a fever. And Cora is allergic to the hospital blankets and sheets and started to develop a rash.

At this point I started to feel overwhelmed and emotional. Totally at a loss for my daughter.

This afternoon they were able to get her fever down, although she was still breathing labored.  So the fellow on the floor increased her high flow back up to 3 (it was being weaned to room air oxygen) to help Cora again with the breathing.  Her drainage has not slowed very much and she has started losing "kile" (sp?) with the other drainage.  This is losing fat from one of her lymph nodes and that means that the formula she is eating is putting the fat out of her chest tubes.  Lord, I hope I said that right for ya'll.

When I finally got her to sleep this evening her heart beat was doing well again and her breathing was slowed to 50 bpm.  We are using the two blankets that I brought with me for the trip to keep her off the hospital linens and her rash has stopped. What was going to be a short stay in the hospital is looking like a longer one.  But if this is what Cora needs, this is what Cora gets.

In all of this, Cora still finds the energy to smile at me and give me a raspberry.  Never thought I would be happy to see one of my kids spit at me...

 A rare moment of rest with Mama

 Emily taking her turn

 Finally a restful sleep