GENEVIEVE IS HOME!

Just as a picture was worth all the words we could utter as Genevieve was first in ICU, this picture says it all tonight. She is home!

This picture was taken shortly after Genevieve had a long needed nap and then emptied the contents of her stomach, residual anesthesia, narcotics, and some motrin all over her Aunt Meredith. Meredith stood there and encouraged her to get it all out. We just cleaned both of them up and kept on going. No doubt a special bonding moment with her Godmother.



Genevieve is on numerous round the clock meds for the next 3 weeks and beyond. The staff at Vanderbilt made a diagram for the frig., they thought of everything! Genevieve is not to leave the house, save for stroller and mother nature until June 12 when she sees her surgeon again. Universal precautions are a priority, Genevieve will recover in solitude until released by her cardiologist, again on the 12th.

We were not the only ones glad to have Genevieve back home.

I am reluctant to post a picture of Genevieve's abdomen...she has a scar from tip to tip across her chest and sutures from all of the tubes. She is incredibly bruised and there are no bandages...she has brusies from the 5 IVs. She is wearing the last 8 days and they are the reminder of the victory. We have received praise and shout outs from coast to coast tonight from all of our dear friends and family. We share our joy with all who have made Genevieve a daily topic with God. She is indeed a tribute to God's loving-kindness.

I will continue to update home recovery.

And on the Seventh Day...

Genevieve made the turn. The 3 chest tubes were removed, at long last! The perk was that we all recognized the smile of relief and joy. It was a particularly nasty 24 hours until mid morning today, a fever that was off the charts, 106 degrees and a child that was in sheer agony. The tubes were removed ( a grusome process in itself, they were sutured in and required some force to pull them out) and a new treatment plan was put in place.

The mid day and afternoon was full of smiles and numerous visitors; great grandparents from Indiana, plus Uncles Steve, Duane, and Ryan, Aunt Cindy, and second cousins Chelsey and Mary Rachel. By 5:30 the long day was taking it's toll and pain management was high of the list of needs, hopefully the care team will be one step ahead of the pain.

Genevieve does cry a great deal...her cry has not reached into her belly yet...it is muffled and she draws air to wail...only to have it come out at half volume. I know what parents in the support group mean now...nothing like the sound of a child with a strong cry...I get it.

Food is still an issue, she has made huge progress in keeping formula down, yet is only taking between 8 - 10 ounces in a 24 hour period. Normal intake for an almost 5 month old is 24 ounces. Now that she will be able to rest, she should work up an appetite. She has been switched to all oral meds, part of getting her ready for home recovery.

Pics from the day:

L to R: Buddy, Great Grandpa Tom, Uncle Steve, Great Grandma Mary and 3/4 of Uncle Duane.

L to R: Great Granndma Mary, Uncle Duane, Chelsey (recent 3.8 high school grad!) Mary Rachel, Ryan and Aunt Cindy.

Uncle Ryan and Genevieve getting caught up.

Sunday - Day 6

Genevieve continues to hold her own, and Hillary continues to fight fatigue, exhaustion and having enough to be all that Genevieve needs. Hillary is doing a super job, we (Meredith, Dave and I, her respite team) could not begin to be the constant caregiver that Hillary is for her daughter. It is a hard job; Genevieve's nurses can't say enough good things about the relationshp Hillary and Genevieve have, and Hillary's devotion.

I would love to report that Genevieve had a good day, she did not. She was in constant pain with brief snippets of smiles and wide eyed wonderment...mostly likely when Meredith was doing nothing short of standing on her head. Every child should have an Aunt Meredith, sheer love that has no boundaries.

The chest tubes remain...there is no alternative...she is still leaking too much fluid, and if the tubes were removed too soon, it would be disastrous. Pain management without narcotics is the challenge of the day. Tylenol only takes the edge off...the pain still exists. The only relief is removal of the 3 tubes that have been in her since Tuesday of last week. We wait, we fill our lungs with air and we know that tomorrow is a new day...Genevieve has many new days to embrace...the long road provides many lessons...we are in it for the long haul.

Genevieve no doubt feels all the love God and His kingdom provide...we thank you all, we could not walk through tough days like today, without your love and prayers.

Peace
-Laura

Saturday - Day 5

Genevieve had her best day yet...at home we would call it a fussy day...but considering what she has been through and what is ahead of her...we'll gladly take it as best day yet.

The 3 chest tubes remain...we are told repeatedly that once they come out, she will improve tenfold. While it is something to hold on to; it does not change anything today. Dr. Christian will decide tomorrow if they can come out, if not...we add another day to recovery.

Genevieve started holding food this afternoon...Hillary and Genevieve were able to get in a nap, it seemed to be just the remedy.

Some pics from the day

<--Genevieve and Buddy playing with

the toys her mother gifted her today.

Bucket-head buddies ---->

Graduated from ICU

Genevieve was moved to a private room tonight (Friday); I think we thought the nurses were joking, but nope...Genevieve has her own room with less beeps and foot steps. I think we might have been moved by default...all day long she teetered on meeting criteria due to bowel obstruction...typical abdominal surgery issues and very unpleasant for baby who is hungry but so uncomfortable she doesn't want to eat.

Aunt Meredith made the time more enjoyable by putting on a puppet show with "Bunny Blanket" and "George". --->

<--- POST OP TAILGATE party compliments of the Kilgore Family and a collaboration with Tara. Tammy and George are both fabulous cooks; we made lots of friends on the 6th floor. Whenever I am lucky enough to share a meal that Tammy has prepared, I think of her grandmother.

Rod was Genevieve's nurse overnight. He had her sitting up, something she has not done in 4 days. --->

Buddy watching Buddy

Nurse Rod decided that Genevieve needed two mobiles. --->

Saturday Morning: Genevieve's newest goal is twofold. Her chest tubes remain and will remain Saturday, these are the tubes that drain the fluid collecting under her suture. There is another collection point in there, I am not well versed on the point of origin. There is a great deal of fluid still draining, volumes less than 3 days ago, but too much to remove the chest tubes. Her other goal is to eat and keep it down. The medical team is coming up with an eating/feeding plan for her today. Genevieve has good spells and miserable spells, most of the misery comes overnight when Hillary is there alone. I have to remind myself that we really can't expect giant leaps of progress, that it is a slow process. This is day 5, perhaps we have hit the midway point.

Overnight Thursday - Early Friday Morning

Genevieve had a rough night, she only slept 3 hours and had a hard time getting comfortable. Rounds are being made right now...we begin another day of trying to reach the criteria to have tubes removed. Right now, she only has a standard saline IV (the other 3 lines remain in her but not utilized) and she is taking regular liquid tylenol. Lasix was stopped overnight and all other IV meds.

Genevieve is refusing her bottle, after yesterday...I completely understand. However, it is a criteria for moving to the next stage of recovery.

Second Day - Third Night ICU

It is the end of a long day, if I were to tell you that Genevieve pushed through rough spots with flying colors, it would be an under-statement. Every hour that a medicine is taken away and not added, is a joyous event.

Our nurses and Dr. Medu (nickname) have become our champions in the room. I imagine my dear sweet friends on their knees and looking for ways to be useful to us, I imagine the numerous people who don't know Genevieve or her mother, who have taken this situation as a personal invitation to talk with God or get to know him again.

We are lifted up, we know that we are in the loving care of God and people who do the work that Jesus challenges us all to do. We know this, and it is silly to sermonize what so many people do with gladness and joy in their heart...to let Genevieve's name cross their lips in prayer.

We thank you all, we feel your prayers.

As I look at the faces of the other parents on the fifth floor, our rough spots present themselves as blessings.

• Imagine your 14 year old child is the sole survivor of a recent car wreck in the news, you have had to bury 4 family members while keeping vigil in your son's ICU room, praying that the monitors don't lie and your child's brain is in tact, even though every bone is in body is broken and fluid surrounds his brain.

• Imagine your infant undergoing a routine heart procedure in Kentucky, only to have it botched and your child is air lifted to Vanderbilt.

• Or imagine that you are Hispanic and your adolescent daughter is seriously injured and you don't speak English, you are the father keeping vigil, because the mother has to work...the nurses are kind..but what are they saying and how do you feel the compassion, other than their faces and how they keep your child's pain at bay?

Courage has one look, it is the tears that don't come behind the eyes of strength. If you ever doubt that God is alive and well, or if you ever doubt that God has a template of how you should live your life...go to a hospital...go to ICU...go to surgical waiting room...you will receive a primer on "what the walk looks like".

Like I said, it was a long day.

Genevieve news:

It took an entire day to reach the goals we hoped would come to pass. Genevieve was taken off oxygen at 10 p.m. this evening, she is breathing on her own. Huge for a TET baby...adequate oxygenation is paramount. Blood gases continued to indicate a need for potassium...a fifth IV was started and remains in place. Her diuretic was decreased through out the day...her renal output is favorable and no longer a concern. Genevieve started vomiting with every feeding...so those were stopped(her feedings). She began to vomit with her tylenol with codine, that was stopped. The Doctors contemplated putting her on morphine again, but that would compromise the progress she made with her bowels. So...she is on good ole tylenol suppositories. Imagine you had open heart surgery 48 hours ago and all you can reach for is tylenol...I can't begin to imagine how Genevieve does this...but she does.

Genevieve has kept 2 ounces of pedialyte down since 8 p.m. One ounce at 5:30 and another at 8. Imagine looking at the clock knowing that each minute she doesn't vomit is another minute closer to losing some IVs. This is important because...once she keeps food down; she can switch to oral medication and have the central lines removed, the pace maker wires removed, the central drainage tube removed and the catheter removed.

We go to sleep tonight optimistic that tomorrow continues to provide strength to push through the rough spots, whatever they may be. Hillary is holding her own...she needs a break and the only break we can offer is being with her for as long as visiting hours allow and taking her to dinner when we are shooed out of the ward during shift change.

<--- Aunt Meredith and Genevieve mid day.

Good night Genevieve --->

News From Overnight ~ Thursday Morning

Genevieve came off her pacemaker, her heart rate is 156 this morning without assistance. She is much more alert this morning and making audible sounds...the known hurdle this morning is keeping pedialyte down. She is receiving additional IV fluids until she turns this corner.

Twenty Four Hours Post Op

Genevieve had a rough 24 hours. Her surgery yesterday took the long road, Dr. Christian did all of the repairs, then before closing, she performed another echo cardiogram and discovered she needed to go back in and repair some more. Genevieve was placed on the bypass machine twice...not a favorable outcome; however...not uncommon.

<--- Genevieve came off her ventilator at 5 a.m. this morning, an excellent hurdle to have behind her. As she came off her ventilator...the challenges began. Her right ventricle was not working, in other words there was "no squeeze" and Genevieve's arms and legs were not getting blood pumped to them and were turning ice cold to the touch. This sent a ripple in the morning and medical staff going in all directions... Genevieve was put on a pace maker. Her right atrium is stimulated in order to make her right ventricle work. She was also placed on medicine to raise her blood pressure and make her heart work harder. By mid day, her heart rate was improving along with her blood gases. Then attention turned to her renal output, again...not great news but with doses of lasix her kidneys increased their output, still not where it needs to be, but improving. There is concern about fluid collecting around her lungs. Genevieve is beginning to swell due to all the IVs...to be expected. She remains on morphine and tylenol with codine...Genevieve does wake up and look around, she is responsive yet is unable to cry...she does whimper and emit a raspy hum...kind of hard to describe.

Genevieve's recovery process increased by one day today...she remains in ICU.

The family and church family who are here keeps a revolving door at the hospital, Genevieve's Great Grandparents are here and will return to Mississippi tomorrow.

The goal now is to get Genevieve well enough to leave ICU. She had 3 bottles of pedialyte and kept it down. She was given formula and that did not go so well, it came back up.

<--- Genevieve's incision and suture is something new, Dr. Christian is one of a handful of surgeons who do a "princess" incision for their young female patients.

Surgery - May 23, 2006

It has been a long day for Genevieve and while I have pictures of her family in the waiting room and our visitors...this picture says it all...Genevieve is in excellent care and while we hardly recognize her, she is in there and God is with her and us.

Tomorrow brings the opportunity to reflect on today...and what we have learned along the way...we are so grateful that this is the good news at the end of this day.

Peace ~ Laura

Pre-Op Procedures Monday, May 22, 2006

Genevieve arrived at 9 a.m. for pre-op, it was an easy paced morning and afternoon of tests, tests and more tests.


<----Nurse Tina made sure that all the rounds were made to all the departments; logistics and kindness was her specialty.


First up was an EKG, that wasn't so bad save for all the wires and stickers, and it took 3 people to hold Genevieve down. --->



<---Then it was time for a chest X-ray. That wasn't so bad either.


Then it was time to see my cardiologist Dr. Dodd; she is always glad to see her patients. --->





<---The worst part was the middle of the day, drawing blood can never be good when you are this little.

On to more surgical information, day of surgery procedures and a chance to finally taste Nurse Tina's stethoscope.->




<---Finally a nap.


As you can see, I am ready for my Tetralogy of Fallot open heart surgery at 5:30 a.m. tomorrow --->

Countdown: Four Days

Genevieve visited her Great Grandparents with her mom, Hillary. They came back from MS loaded with pictures. Genevieve is having good days, smiling from ear to ear and has discovered that she can belly laugh. This picture was taken at the Jackson Zoo earlier this week; one of Hillary's favorite places to visit since she was a baby.

What is Tetralogy of Fallot?

Treament is surgery to redirect the blood flow inside the heart so that it goes in the proper direction. What the surgical team will do during a 6 - 8 hour procedure. Genevieve's repairs are in red.

Ventricular Septal Defect or VSD
This hole permits blood to flow from the high pressure (red, oxygen carrying) left-sided circulation to the lower pressure (blue, oxygen poor) right-sided circulation. This abnormal blood flow is called a left-to-right shunt and follows this path because the left ventricle usually has a much higher pressure than the right ventricle.
Infundibular Stenosis
The infundibulum is in the outflow area (exit) of the right ventricle just beneath the pulmonary artery and valve. It forms a passageway for deoxygenated (blue) blood to flow to the lungs. Infundibular "stenosis" or narrowing means that there is a narrowing in this passageway that obstructs the flow of blood to the lungs. The degree of obstruction can range from mild to severe. This will cause the pressure inside the right ventricle to go up as it tries to push the blood through the area of obstruction. An added problem is that the pulmonary valve itself and the pulmonary artery may also be narrowed, which further adds to the obstruction.
Overriding Aorta
The aorta is the artery that carries oxygen rich red blood to the rest of the body and is normally open only to the left ventricle. In tetralogy of Fallot the aorta is shifted toward the right ventricle and sits above or "straddles" the VSD. The aorta is then open to both the right and left ventricle. This allows mixing of deoxygenated (blue) and oxygenated (red) blood as it flows out of the heart to the rest of the body. Thus the amount of oxygen in the circulation is lower than normal causing symptoms of shortness of breath, fatigue and a decreased activity level.
Right Ventricular Hypertrophy
Hypertrophy is a term used to describe a muscle that is unusually thickened. In tetralogy of Fallot, the right ventricular muscle wall is thickened because the right ventricle must work harder to push blood through the narrowed pulmonary artery and infundibulum. Unfortunately an increase in heart muscle thickness may precipitate irregular heart rhythms or cause patchy areas of scar tissue making the heart very "irritable." This makes the heart prone to irregular heart rhythms and reduced performance.

~information and diagram from The Mayo Clinic

Background

Open Heart Surgery is scheduled for May 23rd at Vanderbilt Children's Hospital to correct Tetralogy of Fallot that was diagnosed when Genevieve was 3 days old. She is 4 months and two weeks old now, and surgery is just over a week away. I anticipate that journaling will be a great way to process what God and Science look like. Plus document for Genevieve that she is indeed sealed and marked as God's own.