Ava I am writing this post for you so you will always know that You are a Miracle. That from the beginning God has used your life for His glory, your life is proof of a miracle working God. I can only imagine the great plans the Lord has for you and the great things you will do. Like the start of a great novel your story began and I know God is writing a story that I cant wait to read. Each day another page is turned and I am so thankful for the new discoveries of you, of your personality, your sweetness, your strong will, your heart.
I love you and here is your chapter one..
Chapter 1 Delivery
The Friday before you were born I was at home with your brother, you weren't due for another week. My heart started racing, which was something I had experienced a lot in pregnancy but normally it would stop after a minute, well my heart was beating over 200 bpm for over an hour and I felt exhausted, I called the doctor she said to go in immediately to the hospital, your dad rushed home and we rushed to the hospital. When we get there the elevators were broken and they suggested we use the stairs, that was not happening, luckily a doctor saw my distress and took me on a private elevator up to Labor and delivery. They got me in bed and hooked me up to the monitor and the first words out of the doctors mouth could've come from a sailor... She had never seen anyone with a heart rate of 215. About ten minutes hooked to the monitor and just as suddenly as the racing had started my heart rate dropped to 52 cuing more sailor talk from the doctor. By that time the cardiology team was in the room and the discussion began about induction, they wanted to get you out because they feared another episode like that would happen and the only answer would be the "all clear" shock pads to try and put my heart into normal beat pattern... that did not sound appealing to your dad or me so we agreed to induce you.. they started drugs on Friday night but nothing happened, all day Saturday I had Pitocin induced contractions but by 8 pm I still had no progress.. I was 0, 0, 0. not dilated, not short, not soft, not effaced.. But I was exhausted, hungry and irritable, and your poor dad hadn't slept in about 40 hours.. the on call doctor suggested we stop everything and let me get up, shower, eat dinner and sleep.. I loved her immediately. Your Gigi came up and spent the night with me that night so your dad could go home pack himself a bag and sleep and he was going to come back first thing in the morning. The night went just as planned and they even gave me some drugs to help me sleep well. Sunday Morning I woke up refreshed and with a plan, we were going to get you out. I Facebooked my friend Krystil who helped deliver your brother, she is my good friends Troy and Amy Willis' sisters sister... anyway I asked her if she was working and if she would try and get me on her rotation.. Everything was working out and my plan had begun... God was laughing.. The nurse checked me at 8 am before Krystil took over I was still 0,0,0. As soon as Krystil came in I told her my plan.. Step 1 was epidural I knew that I didn't want another day of contractions and Step 2 was Foley balloon.. after the epidural I thought they could just stretch everything that needed to be stretched so that you could come out already...well Krystil calls for the epidural and all of a sudden I'm having contractions, back to back really hard contractions. The Anesthesiologist comes in about 830 to give me the epidural.. my contractions were so bad I could barely sit still enough. These contractions were not part of my plan, the epidural was in but only working on one side, after pressing "the button" multiple times I was finally feeling some relief. About that time your dad walks in and I tell Krystil part 2 of my plan...it was about 850 am. Krystil agrees but I tell her I feel something between my legs, she comes over with the Foley balloon and says "open your legs" and just as quickly she shouts "Close your legs" I say "what??" she slams my knees together and shouts again "close your legs." Krystil runs into the hallway to shout for a doctor. In runs the doctor and in one swoop has her delivery garb on and a face mask. I was laughing so much they put an oxygen mask on me. I couldn't believe what I was seeing. Ava Jewel you were already bulging out in the sac with every contraction.. The doctor broke the sac and there you were beautiful and red and screaming... It was 9:01 am Sunday, March 30th. We can make plans but God had His own plan.. and it was better than anything I could've hoped for. Gigi and your dad were in the room when you were born and your next visitor was my dad, PopPop. his story is chapter two of yours.
Chapter 2 PopPop
I'll never forget the first time PopPop saw you... you were just a few minutes old and we were still having our skin to skin time.. he wiped away tears with his bandana at the sight of beautiful you, then he leaned and gave me a kiss on the forehead as he walked by our bed. He was so proud. A few hours later he got to hold you for the first time, he always looked so nervous holding a newborn. I don't know what all he whispered to you in those moments.. had I known the future I would have recorded everything... He had just gotten out of the hospital himself the Friday before. He had been struggling with complications with liver disease.. he was on the liver transplant list and had been waiting for 7 years, the problem was that PopPop was a lot more sick than he acted and looked, he was really tough. He came to visit you a couple more times before we went home from the hospital. We came home with you on Wednesday and on Friday PopPop cooked us a roast and brought it over, the picture of him holding you on the couch was that day.. that's the only picture I have of you two.
I love you and here is your chapter one..
Chapter 1 Delivery
The Friday before you were born I was at home with your brother, you weren't due for another week. My heart started racing, which was something I had experienced a lot in pregnancy but normally it would stop after a minute, well my heart was beating over 200 bpm for over an hour and I felt exhausted, I called the doctor she said to go in immediately to the hospital, your dad rushed home and we rushed to the hospital. When we get there the elevators were broken and they suggested we use the stairs, that was not happening, luckily a doctor saw my distress and took me on a private elevator up to Labor and delivery. They got me in bed and hooked me up to the monitor and the first words out of the doctors mouth could've come from a sailor... She had never seen anyone with a heart rate of 215. About ten minutes hooked to the monitor and just as suddenly as the racing had started my heart rate dropped to 52 cuing more sailor talk from the doctor. By that time the cardiology team was in the room and the discussion began about induction, they wanted to get you out because they feared another episode like that would happen and the only answer would be the "all clear" shock pads to try and put my heart into normal beat pattern... that did not sound appealing to your dad or me so we agreed to induce you.. they started drugs on Friday night but nothing happened, all day Saturday I had Pitocin induced contractions but by 8 pm I still had no progress.. I was 0, 0, 0. not dilated, not short, not soft, not effaced.. But I was exhausted, hungry and irritable, and your poor dad hadn't slept in about 40 hours.. the on call doctor suggested we stop everything and let me get up, shower, eat dinner and sleep.. I loved her immediately. Your Gigi came up and spent the night with me that night so your dad could go home pack himself a bag and sleep and he was going to come back first thing in the morning. The night went just as planned and they even gave me some drugs to help me sleep well. Sunday Morning I woke up refreshed and with a plan, we were going to get you out. I Facebooked my friend Krystil who helped deliver your brother, she is my good friends Troy and Amy Willis' sisters sister... anyway I asked her if she was working and if she would try and get me on her rotation.. Everything was working out and my plan had begun... God was laughing.. The nurse checked me at 8 am before Krystil took over I was still 0,0,0. As soon as Krystil came in I told her my plan.. Step 1 was epidural I knew that I didn't want another day of contractions and Step 2 was Foley balloon.. after the epidural I thought they could just stretch everything that needed to be stretched so that you could come out already...well Krystil calls for the epidural and all of a sudden I'm having contractions, back to back really hard contractions. The Anesthesiologist comes in about 830 to give me the epidural.. my contractions were so bad I could barely sit still enough. These contractions were not part of my plan, the epidural was in but only working on one side, after pressing "the button" multiple times I was finally feeling some relief. About that time your dad walks in and I tell Krystil part 2 of my plan...it was about 850 am. Krystil agrees but I tell her I feel something between my legs, she comes over with the Foley balloon and says "open your legs" and just as quickly she shouts "Close your legs" I say "what??" she slams my knees together and shouts again "close your legs." Krystil runs into the hallway to shout for a doctor. In runs the doctor and in one swoop has her delivery garb on and a face mask. I was laughing so much they put an oxygen mask on me. I couldn't believe what I was seeing. Ava Jewel you were already bulging out in the sac with every contraction.. The doctor broke the sac and there you were beautiful and red and screaming... It was 9:01 am Sunday, March 30th. We can make plans but God had His own plan.. and it was better than anything I could've hoped for. Gigi and your dad were in the room when you were born and your next visitor was my dad, PopPop. his story is chapter two of yours.
Chapter 2 PopPop
I'll never forget the first time PopPop saw you... you were just a few minutes old and we were still having our skin to skin time.. he wiped away tears with his bandana at the sight of beautiful you, then he leaned and gave me a kiss on the forehead as he walked by our bed. He was so proud. A few hours later he got to hold you for the first time, he always looked so nervous holding a newborn. I don't know what all he whispered to you in those moments.. had I known the future I would have recorded everything... He had just gotten out of the hospital himself the Friday before. He had been struggling with complications with liver disease.. he was on the liver transplant list and had been waiting for 7 years, the problem was that PopPop was a lot more sick than he acted and looked, he was really tough. He came to visit you a couple more times before we went home from the hospital. We came home with you on Wednesday and on Friday PopPop cooked us a roast and brought it over, the picture of him holding you on the couch was that day.. that's the only picture I have of you two.
On Sunday, Gigi called and PopPop was having trouble breathing and they were taken to a hospital by ambulance. Your dad and I loaded you up and rushed to the hospital. You stayed in the car as we took turns going in and seeing PopPop. He wasn't doing well, he was on a ventilator and I was scared but PopPop had been in the hospital so many times, and I assumed just like very other time he would stabilize and come home. I was wrong PopPop didn't come home.. He died on Monday April 7th. You were one week old. At the beginning of the week I got to see you enter this world and draw your first breath in such a sudden commotion and at the end of the week I saw my dad draw his last breath and pass over into eternity. I was devastated and I was in disbelief. This wave of grief and emotions overtook me and I could barely stand up, you see Ava I always believed your PopPop would get a liver transplant. I never doubted that he'd live, that he'd be there. But there I was in a hospital room and he was gone. Grief to me feels like drowning.. there's panic, and an inability to breathe, to think, there is no strength or direction just waling hoping to be rescued, for this to not be happening and all the while you're still expected to function like a normal person, to walk, to talk, to eat, to make plans.. its so unreal. But there you were, one week old, so little and you needed me, but sweet girl what a blessing you were to me then, just when I couldn't take anymore of the grief you'd need to be fed or changed and for a moment I had respite. I could breathe, I could sit, I could just be with you and look at the goodness of God and know that He was still good. I think its impossible to hold a newborn and not feel joy or sweetness or peace and you sweet girl were all of those things for me during the darkest hours of my life, and I am so thankful for you and your life and rescuing me from the depths of my grief.. you brought light and life to the darkness I was walking through, God used your little life to teach me so many things during that time and that was just the beginning..
Chapter 3 The Fever
On Thursday May 1st, I noticed that you were feeling a little warm, but I am the type that thinks babies always need socks on and to be fully dressed and swaddled so I chalked it up to me over dressing you... I took off some layers and waited for your temperature to go down but it only got higher, by 8 pm you had 102 and I called the doctor, he said to monitor you, give you Tylenol and to come in in the morning. Through the night even on Tylenol you maintained the temperature and at 730 am we were at Dr. Kagans office when it opened. He looked at you and couldn't find any reason for your fever so he sent me straight to Texas Children's. I was worried sick, I held you as they took blood samples and started an IV and called your dad to come when they started talk about doing a spinal tap.. I couldn't handle it, you were 4 weeks old, too little for all of this. Your Dad came and handled the hard part and held my hand through the slew of doctors and their opinions and the test results that all came back negative.. your fever was a mystery so the decided to admit us. They took us up to the most sterile little room in the NICU and closed us off, there was a list of rules, no phones, no food, no drinks without lids, there were machines beeping and metal beds and one chair for a parent to sit in, your dad and I took turns. I was miserable and mad, I didn't want to be there, I didn't want you to be there I just wanted an answer for your fever some medicine and to go home.. after 3 days of little food and no sleep you had been fever free for 36 hours and nothing had grown from your spinal tap or blood work so they chalked your mystery fever up to a virus and let us go home.. I was so glad, I had a busy week planned. Your brothers birthday party was that Saturday and I still had a whole lot to do, you were feeling better and I felt like the whole hospital trip was a waste of time and needless poking of you. Saturday came and we had a great party, your brother turned 2 and you came dressed in the cutest party onesie with matching rainbow leggings, I was leery to have you around so many kids with all their "viruses" so I put Gigi on Ava watch and you stayed in your stroller for the majority of the night covered up away from the crowd. Gigi made sure no one touched you or got to close when looking at you. Towards the end of the party you were getting fussy so I took you out to feed you and I immediately knew you had a fever again. I tried not to panic I took your leg warmers off and fanned you.. Surely you just got too hot covered up in the stroller... when we got home I took your temp 101.2. I started crying and your dad tried to comfort me, I didn't want to take you in again, put you through that all for nothing. You slept in a diaper that night and in an hour temp was down to 98.3 and I was so relieved. All night your temp stayed down and I thought you just got overheated. I immediately removed the minky carseat cover and cursed it for giving you a temperature. The next day was Mother's Day and we were going to meet your Grammy and Paw Paw and Jill for mothers day lunch. I got you dressed in the sweetest floral dress made sure it was extra cool and we headed to lunch. when we got to the restaurant your dad said you felt hot, I whipped out the thermometer 98.7, all good. no need to panic. We finished our meal and headed over to Gigi's house to celebrate Mothers Day with her. when we get to Gigi's I take you out of the carseat and you are on fire... you are so hot it was hard to hold you. we immediately strip you down and I take your temperature. I was terrified as I saw the numbers rise and rise and rise and then I was hysterical... 104.3 I frantically call the doctor as I am shaking trying to measure out Tylenol, Gigi is praying and your Dad is packing up for a trip to the ER. Straight to Texas Childrens again. They decided to do blood work and not a spinal tap since you had just had one the week before. At around midnight they tell us that they think its just the virus lingering, that to bring down the temp to alternate Tylenol and Advil every 3 hours and they sent us home.
There are very few things as upsetting as knowing something is really wrong with your child but no one acting like it. That night we brought you home, but you were not alright. You screamed all night and despite my best efforts to comfort you my touch seemed to cause you pain. Your fever never went down the lowest it got was 103.7. I knew in my heart something was really wrong. At 6 am I told your Dad to call the doctor and tell him we were going back to the hospital but as he went to pick up the phone, Dr. Kagan was calling us. "Something has shown up in the blood work, head immediately to the hospital" and like a flash we were gone, my mind was racing with all of my non medical knowledge.. what could it be cancer? leukemia? what is in blood? what would show up?
We get to the hospital and are immediately taken to a quarantined area and I am in full panic. the nurse comes in and tells us they are going to do another spinal tap. The first one you had, your dad said the spinal liquid that came out was crystal clear, your dad was with you again for this one, I didn't think I could handle it, this time when I saw his face when I came back in the room I knew it was different, he said your fluid was cloudy and gray, his eyes full of tears. neither of us knew what that meant yet but we knew it couldn't be good. A nurse came in to comfort us and said the doctor would be in shortly with the results and asked if she could pray for us. She told us she was a Christian but understood if we didn't want her to, I told her we were Christians also and thanked her. after what seemed like an eternity the doctor came in, she seemed very scared to tell us what she was going to say, she struggled for words and to steady her voice I grabbed the bed I was sitting on trying to brace myself for the bad news I knew was coming. You my sweet girl were in my other arm as I held on tightly and kissed your forehead.
Chapter 4 The Diagnosis
"Your Daughter has Bacterial Meningitis" Her words came out and my heart stopped. I looked at your dad who was sitting in a chair beside the bed he looked like he just had the wind knocked out of him.
"What does that mean? Is she going to die? what does that mean?" I cried. The doctor said she was going to get the information for us and left the room. I looked at your dad but I could hardly see because of the tears. I tried to breathe. the doctor came back with a list of statistics..
D- "60% of children diagnosed never leave the hospital"
Me- "they don't leave because they die?!!?"
D-head nod yes unable to say the words
Me- "SO she has a 40% chance to live?"
D- "well of those 40% ,85% are deaf, dumb, blind can't walk talk or function"
Me- " So she has a 15% chance of being ok??"
D- " This study is done in children up to age 12, that's not accurate for a 6 week old, not for a 6 week old."
Me- " So she's going to die????"
D- "Is there a clergy or someone I can call for you"
Sobbing I told her that Pastor Greg worked across the street at Baylor and if she could please call him.. I used the phone in the room to call Gigi, and your Dad called Paw Paw and Grammy. And I began to sob loudly. I was completely broken. 5 weeks to the day before I had been in a hospital room very similar and lost my dad and now I was told I was going to lose you. I was uncontrollable and for the first time in my life I told God NO! NO that he could not take you. No that I couldn't do this. No that I had just lost my dad, No that I could not do this. No! No! and not in a begging way but in a stern I should've been struck down way. Thank God He has grace for us.
Pretty quickly a team dressed in full masks came and got us and escorted us up to the PICU, where we were once again in full isolation. and I sat there in the chair as they hooked you up to every machine and I cried. A man came in and introduced himself as your nurse for this shift and he asked me why I was crying. I said well they just told me my daughter is going to die so.. in the rudest voice I could muster and then he stood there looking at me and his next words changed my life .. and Yours... he walked over to a small widow that was separating ours from another room and began to open the blinds, he said "Come here and look at this child, do you see this child? this child might die, they aren't breathing on their own, they aren't eating, that's all machines.. Now look at your child she is awake, she breathing, she's nursing, she's crying, she's fighting and guess what Mama you need to start fighting too, Your child is not going to die, she is going to fight" and at that moment I had it.. I had what I had lost downstairs, I had back what was taken from me in my dads hospital room, I had back what I needed to fight and that was Hope. Hope that you could and would recover.
The next weeks were full of countless needles, spinal taps, MRI's and Doctors. We moved from the PICU downgraded to the NICU then downgraded to a regular room. All the while you fought and I never left you and God never left us. His presence was evident and his work was undeniable. Turns out our next door neighbor, Mr. Mejia, well he is actually a teaching Doctor at Baylor.. I didn't know what that meant until I saw the other doctors faces when they saw him in my room.. Apparently its kind of a big deal!! And I was so thankful. He literally went around the NICU telling everyone that we were VIPs and to be treated as such... and he was able to come check up on you and read your charts and explain everything to dad and I in a way we could understand. I know that God placed him in our lives, He is someone who I will always feel indebted to for his kindness to us during that time... oh and he also brought me the biggest piece of chocolate cake I have ever seen while we were in the hospital.. its the little things you know.
Then there was Dr. Song who took a special interest in you, he came in even when he wasn't on shift to check on you, he bought you nail clippers because you scratched your face, and volunteered to sit with you while I went to get a coke, on his time not the hospitals.. he was so sincere in listening to my concerns and so thoughtful. I know that his steps were ordained and that God put him in your path sweet girl. You know your books The Giving Tree and Peter Rabbit well he gave those to you on your first birthday. He will always hold a special place in my heart.
Your nurses that brought me Dr. Peppers and Twix
Your Aunt Jill who would come on her lunch breaks and bring me food and tea
Your Pastor Greg who would come and pray and bring comic relief
Our church family who prayed endlessly for you
The Ronald McDonald House where I could shower and eat
Our friends that brought food and kindles to the hospital
Your Grammy who was watching your brother for a month long
Your Gigi who would come sit with me and bring me peace
And your sweet sweet daddy who would work hard all day and then spend his evenings with us at the hospital, I don't know how he did it all, I know he had very little sleep during those weeks and no home cooked food.. But he was so strong for us and I saw God working in him, growing his faith.
I saw God in all of it...in every kind gesture, in every smile, in every doctor meeting, He was there writing the beautiful story of your testimony... The beginning of your book.
The day before my birthday after a month of treatment we brought you back home. Whole. healed. a miracle. Sweet girl you are a miracle, and I will always remind you of that. God has used you from the beginning to bring Him glory and I know He will continue to do that if you let Him..
love you,
Mom
Chapter 3 The Fever
On Thursday May 1st, I noticed that you were feeling a little warm, but I am the type that thinks babies always need socks on and to be fully dressed and swaddled so I chalked it up to me over dressing you... I took off some layers and waited for your temperature to go down but it only got higher, by 8 pm you had 102 and I called the doctor, he said to monitor you, give you Tylenol and to come in in the morning. Through the night even on Tylenol you maintained the temperature and at 730 am we were at Dr. Kagans office when it opened. He looked at you and couldn't find any reason for your fever so he sent me straight to Texas Children's. I was worried sick, I held you as they took blood samples and started an IV and called your dad to come when they started talk about doing a spinal tap.. I couldn't handle it, you were 4 weeks old, too little for all of this. Your Dad came and handled the hard part and held my hand through the slew of doctors and their opinions and the test results that all came back negative.. your fever was a mystery so the decided to admit us. They took us up to the most sterile little room in the NICU and closed us off, there was a list of rules, no phones, no food, no drinks without lids, there were machines beeping and metal beds and one chair for a parent to sit in, your dad and I took turns. I was miserable and mad, I didn't want to be there, I didn't want you to be there I just wanted an answer for your fever some medicine and to go home.. after 3 days of little food and no sleep you had been fever free for 36 hours and nothing had grown from your spinal tap or blood work so they chalked your mystery fever up to a virus and let us go home.. I was so glad, I had a busy week planned. Your brothers birthday party was that Saturday and I still had a whole lot to do, you were feeling better and I felt like the whole hospital trip was a waste of time and needless poking of you. Saturday came and we had a great party, your brother turned 2 and you came dressed in the cutest party onesie with matching rainbow leggings, I was leery to have you around so many kids with all their "viruses" so I put Gigi on Ava watch and you stayed in your stroller for the majority of the night covered up away from the crowd. Gigi made sure no one touched you or got to close when looking at you. Towards the end of the party you were getting fussy so I took you out to feed you and I immediately knew you had a fever again. I tried not to panic I took your leg warmers off and fanned you.. Surely you just got too hot covered up in the stroller... when we got home I took your temp 101.2. I started crying and your dad tried to comfort me, I didn't want to take you in again, put you through that all for nothing. You slept in a diaper that night and in an hour temp was down to 98.3 and I was so relieved. All night your temp stayed down and I thought you just got overheated. I immediately removed the minky carseat cover and cursed it for giving you a temperature. The next day was Mother's Day and we were going to meet your Grammy and Paw Paw and Jill for mothers day lunch. I got you dressed in the sweetest floral dress made sure it was extra cool and we headed to lunch. when we got to the restaurant your dad said you felt hot, I whipped out the thermometer 98.7, all good. no need to panic. We finished our meal and headed over to Gigi's house to celebrate Mothers Day with her. when we get to Gigi's I take you out of the carseat and you are on fire... you are so hot it was hard to hold you. we immediately strip you down and I take your temperature. I was terrified as I saw the numbers rise and rise and rise and then I was hysterical... 104.3 I frantically call the doctor as I am shaking trying to measure out Tylenol, Gigi is praying and your Dad is packing up for a trip to the ER. Straight to Texas Childrens again. They decided to do blood work and not a spinal tap since you had just had one the week before. At around midnight they tell us that they think its just the virus lingering, that to bring down the temp to alternate Tylenol and Advil every 3 hours and they sent us home.
There are very few things as upsetting as knowing something is really wrong with your child but no one acting like it. That night we brought you home, but you were not alright. You screamed all night and despite my best efforts to comfort you my touch seemed to cause you pain. Your fever never went down the lowest it got was 103.7. I knew in my heart something was really wrong. At 6 am I told your Dad to call the doctor and tell him we were going back to the hospital but as he went to pick up the phone, Dr. Kagan was calling us. "Something has shown up in the blood work, head immediately to the hospital" and like a flash we were gone, my mind was racing with all of my non medical knowledge.. what could it be cancer? leukemia? what is in blood? what would show up?
We get to the hospital and are immediately taken to a quarantined area and I am in full panic. the nurse comes in and tells us they are going to do another spinal tap. The first one you had, your dad said the spinal liquid that came out was crystal clear, your dad was with you again for this one, I didn't think I could handle it, this time when I saw his face when I came back in the room I knew it was different, he said your fluid was cloudy and gray, his eyes full of tears. neither of us knew what that meant yet but we knew it couldn't be good. A nurse came in to comfort us and said the doctor would be in shortly with the results and asked if she could pray for us. She told us she was a Christian but understood if we didn't want her to, I told her we were Christians also and thanked her. after what seemed like an eternity the doctor came in, she seemed very scared to tell us what she was going to say, she struggled for words and to steady her voice I grabbed the bed I was sitting on trying to brace myself for the bad news I knew was coming. You my sweet girl were in my other arm as I held on tightly and kissed your forehead.
Chapter 4 The Diagnosis
"Your Daughter has Bacterial Meningitis" Her words came out and my heart stopped. I looked at your dad who was sitting in a chair beside the bed he looked like he just had the wind knocked out of him.
"What does that mean? Is she going to die? what does that mean?" I cried. The doctor said she was going to get the information for us and left the room. I looked at your dad but I could hardly see because of the tears. I tried to breathe. the doctor came back with a list of statistics..
D- "60% of children diagnosed never leave the hospital"
Me- "they don't leave because they die?!!?"
D-head nod yes unable to say the words
Me- "SO she has a 40% chance to live?"
D- "well of those 40% ,85% are deaf, dumb, blind can't walk talk or function"
Me- " So she has a 15% chance of being ok??"
D- " This study is done in children up to age 12, that's not accurate for a 6 week old, not for a 6 week old."
Me- " So she's going to die????"
D- "Is there a clergy or someone I can call for you"
Sobbing I told her that Pastor Greg worked across the street at Baylor and if she could please call him.. I used the phone in the room to call Gigi, and your Dad called Paw Paw and Grammy. And I began to sob loudly. I was completely broken. 5 weeks to the day before I had been in a hospital room very similar and lost my dad and now I was told I was going to lose you. I was uncontrollable and for the first time in my life I told God NO! NO that he could not take you. No that I couldn't do this. No that I had just lost my dad, No that I could not do this. No! No! and not in a begging way but in a stern I should've been struck down way. Thank God He has grace for us.
Pretty quickly a team dressed in full masks came and got us and escorted us up to the PICU, where we were once again in full isolation. and I sat there in the chair as they hooked you up to every machine and I cried. A man came in and introduced himself as your nurse for this shift and he asked me why I was crying. I said well they just told me my daughter is going to die so.. in the rudest voice I could muster and then he stood there looking at me and his next words changed my life .. and Yours... he walked over to a small widow that was separating ours from another room and began to open the blinds, he said "Come here and look at this child, do you see this child? this child might die, they aren't breathing on their own, they aren't eating, that's all machines.. Now look at your child she is awake, she breathing, she's nursing, she's crying, she's fighting and guess what Mama you need to start fighting too, Your child is not going to die, she is going to fight" and at that moment I had it.. I had what I had lost downstairs, I had back what was taken from me in my dads hospital room, I had back what I needed to fight and that was Hope. Hope that you could and would recover.
The next weeks were full of countless needles, spinal taps, MRI's and Doctors. We moved from the PICU downgraded to the NICU then downgraded to a regular room. All the while you fought and I never left you and God never left us. His presence was evident and his work was undeniable. Turns out our next door neighbor, Mr. Mejia, well he is actually a teaching Doctor at Baylor.. I didn't know what that meant until I saw the other doctors faces when they saw him in my room.. Apparently its kind of a big deal!! And I was so thankful. He literally went around the NICU telling everyone that we were VIPs and to be treated as such... and he was able to come check up on you and read your charts and explain everything to dad and I in a way we could understand. I know that God placed him in our lives, He is someone who I will always feel indebted to for his kindness to us during that time... oh and he also brought me the biggest piece of chocolate cake I have ever seen while we were in the hospital.. its the little things you know.
Then there was Dr. Song who took a special interest in you, he came in even when he wasn't on shift to check on you, he bought you nail clippers because you scratched your face, and volunteered to sit with you while I went to get a coke, on his time not the hospitals.. he was so sincere in listening to my concerns and so thoughtful. I know that his steps were ordained and that God put him in your path sweet girl. You know your books The Giving Tree and Peter Rabbit well he gave those to you on your first birthday. He will always hold a special place in my heart.
Your nurses that brought me Dr. Peppers and Twix
Your Aunt Jill who would come on her lunch breaks and bring me food and tea
Your Pastor Greg who would come and pray and bring comic relief
Our church family who prayed endlessly for you
The Ronald McDonald House where I could shower and eat
Our friends that brought food and kindles to the hospital
Your Grammy who was watching your brother for a month long
Your Gigi who would come sit with me and bring me peace
And your sweet sweet daddy who would work hard all day and then spend his evenings with us at the hospital, I don't know how he did it all, I know he had very little sleep during those weeks and no home cooked food.. But he was so strong for us and I saw God working in him, growing his faith.
I saw God in all of it...in every kind gesture, in every smile, in every doctor meeting, He was there writing the beautiful story of your testimony... The beginning of your book.
The day before my birthday after a month of treatment we brought you back home. Whole. healed. a miracle. Sweet girl you are a miracle, and I will always remind you of that. God has used you from the beginning to bring Him glory and I know He will continue to do that if you let Him..
love you,
Mom
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