Discoveries and Her Story

I've discovered something great. Those cheap little "Take and Toss" cups from Wal-Mart...the ones with the straws...are the coolest things for two reasons: 1) They don't spill when tipped upside down (seriously...not around the straw nor through the straw) 2) They work just like a juice box. You give the cup a little squeeze and up comes the juice (or whatever liquid you choose). It's just so neat. If I had known about these cups earlier I would have bought them sooner and used them in aiding Ryan's mastery of straw drinking. We've been trying to teach him how to drink out of a straw for several months now by giving him little sips out of our straws. He started sucking from the straws, but when we would put the straw back in the cup instead of sucking the liquid out he would just bite the straw. Last Thursday or Friday I found a juice box in the refrigerator and decided to try it out. I gave it a gentle squeeze and he started sucking. That's the end of the story. Ryan now likes to drink out of the straw.

I don't have a new picture today. I have plenty on my camera, but unfortunately I let my batteries go dead without charging another set. I'll have to wait until tomorrow to download the camera.

Since I don't have any new pictures to share I think I'll share the story of each of my kid's entrance into our lives. I'll start with Brandy's story, and since her life was so short I'll tell an abbreviated version (you may find that my idea of abbreviated is still more like a novel when you finally reach the end) of her entire life. To read the detailed version go here
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Wade and I had been married for 5 years when we unexpectedly conceived our first. We were delighted, elated, excited, nervous, giddy, surprised. Most of all we were happy. I entered my pregnancy with that beautiful innocence that only first time moms have. That innocence that makes you take the test and squeal in delight at the results, you tell your family, make plans, dream dreams. It's such an exciting time. I went to my regular OB appointments and continued life as normal.
At 26 weeks I went for a regular appointment and explained to the doctor that I thought I had a yeast infection. She decided to check it out. Unfortunately it wasn't just a simple infection. I was immediately sent to the hospital. I was dilated to a 2. I went to the hospital...the wires...the IVs...the monitors...the blood tests...all the things that now seems so familiar but at the time were absolutely terrifying. I was all alone and scared. My husband and mother came as soon as they could but we live a good 35+ miles from the hospital.

It was finally decided that I was in pre-term labor. My contractions were coming every 5 minutes, and I had no idea. I felt nothing. I was put on Mag and who knows what else, and then began the constant flow of nurses and doctors flooding in and out of my room relaying the latest news and preparing me for what they believed to be the impending birth of our daughter. The one thing I remember more clearly than anything else was when the NICU doctor came and said that we should prepare for a birth of a very tiny little girl who only had a 20% chance of surviving. I remember her staring at me and I wondered if she was waiting for me to cry. I didn't.

My labor stopped, but more problems began. Not with me. With her. One of the ultrasound techs thought she saw a problem with the baby's heart, so a perinatologist came and did another ultrasound. He said everything looked fine. Again...another tech thought she saw something wrong with the heart, so someone else followed up. After this being repeated a few times it was finally decided that, yes, something was indeed wrong with our little girl's heart. Finally a pediatric cardiologist and a perinatologist did an ultrasound together. Yes...there was a defect...no...they couldn't decide what it was going to be. For now though it looked like it was going to be coarctation of the aorta.

After a short 10 day stay in the hospital I was allowed to go home, but on one condition....I had to stay in bed at no more than a 45 degree elevation. I could take one quick shower and sit for 3 times a day for no more than 30 minutes each time. I said, "Okay and here is my condition: I need home health". I still couldn't feel contractions and I was still having them at irregular intervals. I live 35+ miles away from the hospital. I was scared that I would begin contracting and not know it until it was too late. The doctor agreed.

I followed the doctor's orders. I watched movies, crocheted, cross-stitched, read many books. I was able to stay home for about a month and I was glad. Our goal was to make it to 32 weeks. At that time the doctor intended to lift the bed-rest restrictions. After the month at home I ended up back in the hospital. I started having contractions again. I was given several shots of Brethine and the contractions stopped, but the doctors felt like it was in the best interest of my baby if I remained in the hospital until she was born. They also thought I should stay pregnangt for as long as possible. So much for the lifted restrictions at 32 weeks. I didn't think I would make it much longer.

I made it to 36 weeks. All together I spent 10 weeks on bedrest. 6 weeks in the hospital, 4 at home. On September 4, 2003 at 2:00 in the morning my water broke. My precious little baby girl arrived at 8:15 in the morning. I was so excited...and so exhausted. I hemorrhaged after her birth so I felt pretty bad. Thankfully though she was able to remain in the room with me for a few hours before they wisked her away to the NICU.
Brandy was so beautiful. She weighed 5 pounds 15 3/4 oz. (They rounded it up to 6 lbs 0 oz.). She seemed perfect in every way. The only thing was the concern about her heart.

Early in the afternoon they decided to take her to the NICU for observation. The doctors felt that after her PDA closed it would be evident whether she had coarctation of the aorta. They prepared us for the worst explaining that it could close at any moment and when it did she may need to be mediflighted to the Children's Hospital on the other side of town. Day one went by...followed by day two. Well into day 3 her PDA hadn't closed yet, but by evening it had and the diagnosis was...NO COARCTATION OF THE AORTA! Yea! We were so excited.

The surgery to fix coarctation of the aorta involved an incision in the side of our baby girl and a subsequent "fix" that opened the aorta wider. We were terrified of her having to go through that. Little did we know that later we would be wishing that was the only problem her little heart had.

A Pediatric Cardiologist did an ECHO of her heart and came into our room to explain what he saw. She was diagnosed with ASD and Cleft Mitral Valve. She had not one but two holes between the upper chambers of her heart. He explained that they see this defect often and the surgery did involve an open-heart surgery, but the prognosis was good and we probably wouldn't even have to worry about surgery until she was at least 8-months-old or more. We accepted it, prayed alot, and decided to go on with life. Yes, we were scared, but we had a little baby girl in the NICU who needed us.

Brandy stayed in the NICU for 10 days for "observation". We were so excited about taking her home on that Sunday afternoon. It was great! She was our precious little princess. Having her home was great but not without struggles. She hated (I mean HATED) to eat. For weeks we could only get her to eat between 1 and 2 ounces, and it took a good hour or more to get that much in her. She also began having breathing problems which lead to her being put on heart medications and a diuretic.

At four months old Brandy barely weighed 8 pounds. On good days she weighed 8 pounds on most days she still weighed 7 something. Her cardiologists and heart surgeon decided that it was time! They scheduled a heart cath and a week after that we checked into the hospital for her open-heart surgery.

I can't begin to explain the feelings we had at that time. We were terrified yet confident that everything was going to turn out just fine. This wasn't a MAJOR heart defect...right?
On January 11, 2004 Brandy had open-heart surgery. After a long 6 or 8 hours (I honestly don't remember...I've blocked some of that out) we were told she was doing fine and we could go to the PICU to see her within an hour or so. The surgeon told us that he was able to get a good fix on her heart and that he was glad we decided to have surgery now. He explained that becuase her mitral valve wasn't working well that fluid was beginning to back-up in her lungs and if we would have waited much longer she would have had permanent lung damage.

An hour later we saw our little girl. It was horrifying. She had two chest tubes, on a ventilator, catheter, Central line, 2 IVs, and she was still bloody from surgery. I looked at her, kissed her, told her I loved her and left so other family members could go in and see her. When I reached the waiting room I crumbled into a heap on the floor...crying like I've never cried before. Why did my baby girl have to go through this? She was still too small and oh so innocent...she didn't deserve this.

A week passed and they began talking about sending us home. Brandy was able to leave the PICU, and she seemed to be doing well. She seemed uncomfortable but we were starting to see that precious little girl peak out from behind the horribleness of what she had just endured. We saw her big toothless grin again... and her sparkling blue eyes...and her little stories...and her cuddly sweet innocence that only she possessed.

On Saturday the doctors came in and said that tomorrow (Sunday) would be the day. We were excited, but scared. Could we really take our little girl home after only a little over a week after an open-heart surgery? Was she ready? Were we ready?

The next morning things had changed dramatically. Brandy was very fussy and everything seemed just not right. The surgeon, in his great wisdom, came in and just stood silently watching Brandy. He kept saying that something wasn't right, that Brandy was trying to tell him something. He finally left after deciding that we should stay at least one more night.

At 6 that evening Wade and I sat on the bed and watched America's Funniest Home Videos (it's amazing the things you remember at times). I was holding Brandy. It had been a very long, trying day. After the show we flipped on the lights and it was then that we noticed something terribly wrong. Brandy was blue.

Wade ran out into the hall and yelled that we needed someone fast. The rest became a blur...nurses...doctors...blood tests....oxygen alarms...oxygen saturations....phone calls...noise...confusion...questions. We were sent out into the hall. We waited and waited. Finally she was stabilized and the surgeon (he was called at home since he had to leave the hospital feeling ill) decided that she should be taken back to the PICU, and she should have a blood transfusion as well. Finally, after what seemed like hours of waiting, they began the process of transporting Brandy back to the PICU. I walked right by her side the entire way. She talked to me and looked at me with longing eyes. It was as if she was saying, "Mommy, what's happening? Why is this happening? Mommy, please save me." When we got off the elevator of the 6th floor the nurses told me to go to the waiting room. Brandy would need to get settle in the PICU. We would be able to see her in about 30 minutes or so.

It couldn't have been more than 5 or 10 minutes when someone came out of the PICU looking for me. I knew something was wrong. It was too soon for them to be ready for us. She pulled me aside and said that Brandy had gone into cardiac arrest and that they were doing everything they could. I walked straight to the back of the waiting room and found Wade who was on the phone with the family. I told him the horrifying news and the two of us went through those cold, dark doors of the PICU and down that hallway that now seemed miles long. Brandy was pale. They were doing CPR. I fell against a pole. And we were graciously escorted out of the room and into the Parent Room...the room that we knew was for families who were losing a child.

I prayed and I prayed...like I have never prayed before. Lord, please don't take my baby girl. Please give her back her life. Please don't take her away from me.

Brandy was finally resuscitated after 13 long minutes. We were told that the next few days and weeks would be long and we should be prepared for what the future may hold. We held onto hope. We hoped so hard that we thought we saw things that we now know didn't happen. Doctors continually asked questions like, "Does she recognize you? Does she follow you with her eyes? Does she respond to your voice? Does she respond to your touch?" We wanted it so bad that we began thinking that *yes* we saw all those things.

Another month passed in the hospital, and finally we were able to take Brandy home. We were hopeful and looked forward to the future. We spent the first few weeks visiting cardiologists, neurologists, pediatricians, and a GI specialist.

She was so fragile and still so sick. She began having major problems with reflux that put us right back into the hospital exactly a month from the day we left the hospital in February. She had a Fundo and G-tube placement surgeries. She began services with PT and OT and we went from one specialist to another. During CPR the chest compressions put too much stress on her heart and she now needed a valve replacement. She started having infantile spasms and we started treatment. She even had to be medi-flighted back to the hospital a couple of times after turning blue. (Our hometown ambulance crew was terrified of our phone calls.)

After several months of taking brandy from one specialist to another trying to find some answers...some relief for her...some healing for all of us, we finally went back to the heart surgeon. We loved him. We knew from all of our cardiology appointments that Brandy needed another heart surgery, but we were trying to wait as long as we could before doing that again. We visited with the surgeon and he visited with us with heartfelt compassion and pure love for our daughter. He asked us to consider whether God had intended for Brandy to live a long live...much less in the state she was now in. We went home and thought a long time before we finally made the most difficult decision we have ever made. It was time to let her go. The brain damage was so significant that she never responded to anything other than with cries of pain. She would never walk, never talk, never smile, never be comfortable, never quit hurting. We called in hospice and stopped going to all of the doctors and specialists. Hospice started coming to our house just before Christmas.
On February 14th, 2005 early in the morning Brandy went home...to Heaven. Her last moments were spent laying in bed between the two people that loved her the most...her mom and dad. Jesus welcomed her home and now she is dancing with the angels. Each night when the stars are out and the sky is clear we think to ourselves, "Brandy's ballroom is lit. She is dancing tonight."