Friday, September 15, 2006

When Vanessa went for her 2 week check up her doctor diagnosed her with a heart murmur but was not concerned. She looked "ok", and it was something we were just going to keep an eye on. About a week later I noticed when she laid down she had a mild cough. We took her in and her lungs were clear.."must be her just cleaning out her lungs" I was told. Another couple weeks passed by, take her in again. I was advised that if it continues we would get an x-ray. On August 31, I remember getting her up from a nap and she was drenched in sweat. When we thought about it ... she has been really sweaty the past 2 days and it was strange; different. I called the doctor and demanded that something be done. I knew something was wrong with my baby but did not know what but I wanted an x-ray because she was still coughing. Rick took her in for a chest x-ray, and the next morning my doctor calls me first thing. “You need to take her to the emergency room immediately. There will be a specialist waiting for you when you get there in Sacramento.” Why I asked? “Well her left side of heart is enlarged and her lungs are full of fluid. It’s best that we not discuss this over the phone, because I can not properly diagnose her.”

Diagnose her?

This was the day my heart broke. She was diagnosed with AV Canal Defect...her heart is like a washing machine we were told, and she will need surgery as soon as possible. I held her and cried the whole weekend in PICU. I can remember thinking what did I do? Why my baby? I am healthy, and did everything I was supposed to do. It was hard to accept the fact that Mother Nature is not perfect and she was another statistic.

Up to the date of her surgery was a rollercoaster. We had to take her in several times, because of her running mild fevers or cyanosis. Trying to get her to her ideal weight for surgery was a challenge. She was on a special diet and was hardly gaining weight. It took 4 months just to get her to 10lbs,4oz. The day arrived on Tuesday, 11/02/99 and her surgery was a success. We anticipated her being out 7-10 days and trying to get back to a normal family life and enjoy her milestones. Never did we know that we would have to choose letting her go or facing consequences a few days later.

That night of post op was bumpy but ok. She had a couple of episodes of hypertension, but was managed. Over the next 3 nights she starting having more complications with hypertension and had several bouts of respiratory arrests and heart failure. Her heart was doing great but because of her valve problem that they could not repair at the time; her body could not accept a normal flow. On November 5th after every possible medication, every line blown, and nothing controlling her heart failure we were told our baby would die. She would not make it through the weekend. For some crazy second I felt a moment of relief and peace. I could not bear seeing my daughter go through this anymore and God would decide what needed to be done. But I was not ready to give up and prayed for a miracle.

That night, a neonatal doctor made a visit to Vanessa’s room. Things had gotten even worse after we were told she would not make it through this weekend. Rick and I were handed a piece of paper and briefly we were told, we have a last option. "She can be placed on E.C.M.O. There is no time, but to sign this paper, and another paper explaining what it is. It’s a special life support, heart and lung dialysis machine which is used on preemies. It is a last resort for cardiac and respiratory failure and there is a possibility that it will save her life. She is at a 6% chance of living and without this she will die. There can be severe complications such as bleeding of the brain, CP etc. You need to decide now."

We had to choose from my baby dying, or having a baby that could have severe neurological problems. Again testing our faith in a miracle we decided to put her on life support, outweighing the consequences in 2 minutes. Vanessa was so critical that they had to remove all the parents in PICU on the West side and close it for 2 hours while an entourage of doctors, nurses, and specialists were in the room connecting life to our baby. She was on it that Friday night until Wednesday the next week. Each day it healed her heart and lungs..."gave her body a break" so it could rest. Each day they slowly let her breathe on her own just a little peep, as they called it to see how she would do. She did great. That evening after getting off she had a few little episodes of problems with her lungs but her heart rate was normal. A few days later with chest tubes etc., she was doing better. She was able to move from the critical unit to Intensive care. Each day was another day she was healing. For 23 days straight she was in a drug comatose state. After 3 weeks of being on the ventilator she was taken off and breathing on her own (with oxygen,) I was able to hold her for the first time November 24th, the day before Thanksgiving.

I will never forget the feeling of being so thankful to have our baby.

She had several specialists and critical care doctors visiting for progression. Her cardiologist had recommended a neurological review because Vanessa would only look to her left side post op, and was fisting. She was then diagnosed with a possibility of cerebral palsy, but too early too indicate because of having no muscle control or tone due to ECMO.

December 2nd, 1999 Vanessa was able to go home. She was on a NG tube and full time oxygen. We had a critical nurse assist us at home daily for her care. The first week home she was placed on Methadone because of the drug coma she was in for 3 weeks. She was actually going through withdrawals. Little did I know this was the same medication they give to people having withdrawals from substance abuse. She had to go in and out for another 6 weeks in intensive care for several problems, such as the withdrawals, sinus infection from the NG Tube, extensive crying episodes, etc. Vanessa was on her feeding tube until early February and on her oxygen until April. By April she was progressing well in learning how to hold her head up and roll over, and even sit! She sat up the first time on her first birthday! She was about 6 months behind in everything, especially motor skills. We took her 3 times a week to physical therapy, and 3 times a week she had a specialist come to our house to develop her fine and gross motor skills. We were told that she would most likely not walk until 2 but with complications. At 16 months she started walking. After special tests for gross and social skills Vanessa was above her age level in almost every category! (They) were all amazed.

In Sept. 2001 she was officially diagnosed with mild spastic cp (which affects the limbs) and she had an old brain bleed. Most likely from the E.C.M.O. In March of 2002, she was diagnosed with mild PVL (mild brain damage/softening of the front of her brain). Her neurologist said it was mild and that most likely she will be the kid that struggles in Math and reading. She was also at risks for seizures.

That was 7 years ago. Vanessa will be going into the 2nd grade this fall. In first grade she was at a third grade level in reading and was the number one student in her class. She did have to be placed on medication to decrease heart damage since she still has another open heart surgery scheduled for the valve they did not repair as an infant. She has some really tough heart days, especially if they are active. It wipes her out. She also has muscle atrophy in her left leg so she has a lot of pain sometimes because of the CP. Looking at Vanessa nobody ever comprehends that she ever went through the ordeal with the expectation of disabilities.

Having Vanessa changed us, our lives. We appreciate the little things in life now, where before we took for granted. I remind myself daily that god only gives you what you can handle.

Carol Lopez

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