I'm a child of God, a daughter to wonderful parents, wife to an amazing husband, Mother to 4 little Hams and a friend to many. Our youngest son was born 6 weeks premature with multiple birth defects. He is Globally Developmentally Delayed, Intellectually Disabled and has a diagnosis of a Defect in Complex I of his Mitochondria. Follow us while we learn our new "typical". We are living and learning everyday and praising God every moment for our blessings!
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Thursday, October 29, 2009
Praying for Baby Stellan
I know many of you follow My Charming Kids and Stellan needs your prayers now more than ever. Please say a prayer for this sweet boy RIGHT NOW!
Monday, October 26, 2009
Jake and Gracie sing in the Choir
Yesterday at church Jake and Gracie made their debut in the Children's Choir. They have been practicing for weeks and were so excited! The children's choir sings for special events and since Sunday was Reformation Sunday they were on...
Here is a video of the grand performance, can you tell I'm a proud Mama? I Love seeing my kids praising God!
Saturday, October 17, 2009
Swine Flu
Ugh, it happened.....Swine Flu hit our house. While Ethan is considered "High Risk" our children all got the Seasonal Flu shot before other children did at our Pediatrician's office and they are on the first list for the Swine Flu Shot in the next 2 weeks but as luck has it Sweet Ethan caught it before we could get the vaccination.
On Wednesday he started with a little cough and at 6 pm he was lethargic and his fever was 103.9 so I called the Pediatrician who told me I could either take him straight to the ER or try a new Urgent Care Facility that has opened about 20 minutes from us that is for children only. He told us that they would be able to direct admit if he needed to be in the hospital and since they had a 5 hour wait at the ER I loaded him up in the cold and pouring rain and headed on over to KidMed. I had heard great things about this place. It was opened by ER doctors from St. Mary's Hospital which is our hospital of choice and where Ethan has had all of surgeries and stays so I felt very comfortable. Oh and just like always my BBFF got me there again. What in the world would I do without her talking me all the way to hospitals and ERs?
The staff was great. We even had a Nurse who was in the PICU after Ethan had his "Big Surgery" She was with us on that first night when they were having trouble keeping his stats up and were having to "bag" him. The nurses and RTs were very worried that night when he kept dropping and I could only sit in the chair next to him and pray to God that he would put his healing hands over my Sweet Ethan and put his arms around the Nurses and Doctors and give them the wisdom to help him. That Nurse helped me a lot that night and I will never forget her for what she did for our son so seeing her familiar face really helped calm me. Oh, how our God loves us....he knew just what I needed.
Ethan's lungs were clear but he did test positive for the flu - H1N1 and he because anytime that he has a fever over 102 we have to rule out a UTI, they did a cath and sure enough his labs show a little bit of bacteria in his urine so they are treating him with very strong antibiotics. We will know tomorrow if it is truly a UTI. He is right on the cusp of having to switch to a different antibiotic to ward off UTIs so this is probably a blessing in disguise! All part of God's Plan...
On Thursday he slept most of the day and hardly ate or drank anything but by Friday afternoon he was playing in his exersaucer and rolling all over the place. We are very thankful and blessed that he recovered so quickly. He is considered one of those high risk people in the news that they keep talking about. He is doing well and we are so blessed and thankful!
He is taking 4 meds right now - Tamiflu, Bactrim, Cephalexin and Gentamicin....it takes me back to the beginning.....
Praising God tonight that Ethan is well!
Tuesday, October 13, 2009
Amazing Giveaway!!!
Ok, so I follow a couple of people's blogs and sometimes they have some cool giveaways but I have never played along because I NEVER WIN anything, except that one time when I won a $50 Gift Certificate to the new Michaels but other than that NOTHING. BUT....I am totally into Mama M.'s giveaway from My Little Life. I love her blog and she cracks me up!!!
I have been looking for a piece of jewelry that represents all four of my kids and she is giving away a piece from Moppet's Closet and I have found mine!!!! Just replace the kids names with mine and 3 November birthstones and one December birthstone and viola my new necklace...
All my Baby Mama Friends totally need one of these necklaces for Christmas! I mean, seriously what are you waiting for????
I have been looking for a piece of jewelry that represents all four of my kids and she is giving away a piece from Moppet's Closet and I have found mine!!!! Just replace the kids names with mine and 3 November birthstones and one December birthstone and viola my new necklace...
All my Baby Mama Friends totally need one of these necklaces for Christmas! I mean, seriously what are you waiting for????
Ethan's Story - Ethan Comes Home
The day had finally arrived when we would be able to take Sweet Ethan home. December 30, 2008, after 25 days in the NICU/PCN we would take him home to join his brother and sisters. They had wanted us to room in with him for a night before we took him home but all the rooms were booked, guess lots of moms wanted to get a tax deduction in :) So they decided that Chris and I would both stay with him in the PCN for 2 feedings with no monitors on him except for his heart/apnea monitor which lucky for us was coming home with us. They wanted to make sure we knew what do in the event that the monitor went off at home. He was also sent home on 2 medications, one for his heart called Digoxin and amoxicillian to ward off any UTIs. The Digoxin made me so nervous, we had to listen and count his heart beats and if they were below 100 bpm we would have to call the cardiologist before administering. We also had to give it exactly at the scheduled time - 8 am and 8 pm. If we got off schedule and gave it to him to early we risked his heart dropping to low and his heart stopping or if we gave it to him to late we risked his heart going into SVT. Talk about stress! He had to wear his monitor 24 hours a day for the first 4 1/2 months of his life. It was actually a bit of relief, I don't know how I would have slept those first couple of months if we didn't have that!
We finally got home around 11:30 that night. Gracie spent the night at a friends house and Jake and Anna Claire were at my parents. We were so exhausted and so excited to have our Sweet Ethan home. I laid him in our bed between us and Chris and I just sat and watched him for hours. We were in total amazement and awe at this wonderful and perfect gift that God had given us.
The kids came home the next day and were so excited to see that Sweet Ethan was at home and was well.
We enjoyed the next couple of months and were getting ready for his surgery....more to come later.
Thursday, October 8, 2009
Sweet Ethan spends his 1st Christmas in the hospital
We were glad to be back in PCN! During the rest of our stay we had a couple of little scares, a SEPSIS scare and severe thrush. They determined the thrush was caused by the level of antibiotics that he was given.
The days seemed to drag on forever sometimes and I kept praying, please let my baby be home from Christmas. A couple of days before Christmas we were very close but than he started having some problems with his potassium levels and creatinine levels were increasing so our Sweet baby had to spend his first Christmas away from his family. That was hard, I mean REALLY hard.
The NICU/PCN had Santa come and visit and the babies had their first Christmas picture taken with Santa right there in the unit. What a gift! The March of Dimes even decorated cute Christmas Frames for them. One of the Nurses even made each of the babies matching blankets and hats and had them all dressed up so that when the parents came in on Christmas morning their sweet babies were already dressed for Christmas. It was comforting having such wonderful people look after him.
We went to my parent’s house Christmas Eve and I had to put on a happy face because I had 3 very excited children who just wanted Santa to come. Although, I will tell you that Jake had the hardest time. He comes across like such a tough guy but he is actually very sensitive and nurturing, he gets that from his Dad. He had to write a story for school and had to answer the question, what do you want for Christmas? Of course, his answers were pretty typical, legos, new video games, Pokémon cards but the one that still brings tears to my eyes was that he wanted his baby brother to be alright. I will treasure that sweet Christmas wish. There was a moment sitting in my parents kitchen on Christmas Eve that I began to cry and Lisa (my stepmother who I often refer in my blogging as my Mom) reached over and rubbed my back and helped bring the situation back into perspective for me. He was doing great, we were thankful for no MENKES and I have 3 other children and an amazing husband to be with. That helped! My parents went to visit him that evening and on Christmas Day I went in the morning and my husband took his parents up later that day and I went back to tuck him in that night. I will always remember the blue twinkling lights with snowflakes that the nurses had decorated the PCN and the beautiful Christmas lullabies playing on Baby L’s radio.
I don’t know what I would have done during that time without my family and friends. We relied on them so much, everything from helping out with the kids to bringing us meals. Our church family was also amazing, they arranged Circle of Love which is a group of our Church Family who would bring us meals every other day for weeks. It was so helpful with all of the back and forth from home to the hospital that we did to know that our kids always had a home cooked meal.
Excitement was coming very close, it was almost time for Sweet Ethan to come home…
More to come later!
The days seemed to drag on forever sometimes and I kept praying, please let my baby be home from Christmas. A couple of days before Christmas we were very close but than he started having some problems with his potassium levels and creatinine levels were increasing so our Sweet baby had to spend his first Christmas away from his family. That was hard, I mean REALLY hard.
The NICU/PCN had Santa come and visit and the babies had their first Christmas picture taken with Santa right there in the unit. What a gift! The March of Dimes even decorated cute Christmas Frames for them. One of the Nurses even made each of the babies matching blankets and hats and had them all dressed up so that when the parents came in on Christmas morning their sweet babies were already dressed for Christmas. It was comforting having such wonderful people look after him.
We went to my parent’s house Christmas Eve and I had to put on a happy face because I had 3 very excited children who just wanted Santa to come. Although, I will tell you that Jake had the hardest time. He comes across like such a tough guy but he is actually very sensitive and nurturing, he gets that from his Dad. He had to write a story for school and had to answer the question, what do you want for Christmas? Of course, his answers were pretty typical, legos, new video games, Pokémon cards but the one that still brings tears to my eyes was that he wanted his baby brother to be alright. I will treasure that sweet Christmas wish. There was a moment sitting in my parents kitchen on Christmas Eve that I began to cry and Lisa (my stepmother who I often refer in my blogging as my Mom) reached over and rubbed my back and helped bring the situation back into perspective for me. He was doing great, we were thankful for no MENKES and I have 3 other children and an amazing husband to be with. That helped! My parents went to visit him that evening and on Christmas Day I went in the morning and my husband took his parents up later that day and I went back to tuck him in that night. I will always remember the blue twinkling lights with snowflakes that the nurses had decorated the PCN and the beautiful Christmas lullabies playing on Baby L’s radio.
I don’t know what I would have done during that time without my family and friends. We relied on them so much, everything from helping out with the kids to bringing us meals. Our church family was also amazing, they arranged Circle of Love which is a group of our Church Family who would bring us meals every other day for weeks. It was so helpful with all of the back and forth from home to the hospital that we did to know that our kids always had a home cooked meal.
Excitement was coming very close, it was almost time for Sweet Ethan to come home…
More to come later!
Labels:
CHRISTMAS IN THE NICU,
SEPSIS
Tuesday, October 6, 2009
Ethan's Story - Part 6 - Headed in the wrong direction
When I got to the NICU they wouldn’t allow me to come in. I sat outside in the NICU area where you wash your hands for 45 minutes. The NICU doctor finally came out and told me that shortly after I had left, Ethan’s heartrate jumped up to 220 and they tried to bring him down with ice on his face but it didn’t work so they had to medically intervene. He had two episodes within 20 minutes. I was all to familiar with SVT. I have it, I had an ablation in 1999 to repair my SVT and have only had issues while pregnant. Great, here is something else that I have “done” to my Sweet Ethan. Oh, the Guilt….
When they finally allowed me to go into the NICU my Sweet Ethan looked so peaceful and calm and we were right back to where we started. The NICU is not nearly as encouraging as the PCN. You see when you are in the PCN you can see a light at the end of the tunnel you know your next stop is home or at least we thought. We were not headed in the right direction!
A cardiologist came in that night to look at him and did an echocardiogram and said his heart looked beautiful but they started him on a medication to keep his heart a steady slow beat because to many bouts of SVT can cause severe problems, many of you that read my blog also know Stellan and his trouble with SVT so I need not inform you of the danger…
We stayed in the NICU for another 4 days and we were headed back to PCN. I begged the nurses to please make sure we got our old spot next to Baby L, I couldn’t bear being in there without Mama B. The nurse told me that someone had taken our spot but she said she would see what she could do.
The March of Dimes has a dedicated Unit at the Hospital that we were at and they were so great to us and the Director was so wondeful, she always knew when you needed a little extra support or just nothing at all but someone to sit with you. You see her son was a Preemie, 17 years ago and he is also named Ethan soI like to think she took extra special care of us!
We got our spot back…..
A dear friend’s wife made us a blessing blanket for Ethan. Such an amazing gift, so much love and prayer went into this blanket and we are so grateful for it….
When they finally allowed me to go into the NICU my Sweet Ethan looked so peaceful and calm and we were right back to where we started. The NICU is not nearly as encouraging as the PCN. You see when you are in the PCN you can see a light at the end of the tunnel you know your next stop is home or at least we thought. We were not headed in the right direction!
A cardiologist came in that night to look at him and did an echocardiogram and said his heart looked beautiful but they started him on a medication to keep his heart a steady slow beat because to many bouts of SVT can cause severe problems, many of you that read my blog also know Stellan and his trouble with SVT so I need not inform you of the danger…
We stayed in the NICU for another 4 days and we were headed back to PCN. I begged the nurses to please make sure we got our old spot next to Baby L, I couldn’t bear being in there without Mama B. The nurse told me that someone had taken our spot but she said she would see what she could do.
The March of Dimes has a dedicated Unit at the Hospital that we were at and they were so great to us and the Director was so wondeful, she always knew when you needed a little extra support or just nothing at all but someone to sit with you. You see her son was a Preemie, 17 years ago and he is also named Ethan soI like to think she took extra special care of us!
We got our spot back…..
A dear friend’s wife made us a blessing blanket for Ethan. Such an amazing gift, so much love and prayer went into this blanket and we are so grateful for it….
The note on the card read:
Ethan - this blanket was knitted with a special little baby like you in mind. It is a prayer blanket with everything knitted in three's like the trinity. I hope it brings you as much pleasure as it did me when I made it. Love Blair
More to come later....
Monday, October 5, 2009
Ethan's Story - Part 5 - NICU and PCN Ride
Right after Ethan was born the NICU team rushed him away to the NICU for observation. We were lucky to have had the 48 hours to allow the steroid shots to work and strengthen his lungs so he did not need to be placed on a vent. I was able to go down to the NICU around 4 that evening to see him and I was so excited to be able to hold him. A NICU doctor had come to visit me in my room the night before Ethan was born to go over what to expect in the NICU and some hurdles that we should be be prepared for. I wasn't....if you have been in a NICU you know what I'm talking about. We were next to a baby who was born at 21 weeks. He was so tiny and they kept a cover over his incubator except when they worked on him. His little legs looked like pencils and when he cried he sounded like a kitten. Our Sweet Ethan was a hoss next to him at 6 lbs 3 oz! The NICU was warm, and had just enough light for the nurses and doctors to see. The noise in the NICU is something that you never forget, the sounds of the machines,beep, beep, beep and the breathing machines hissing. I don't think I will ever get the sound out of my head. The nurses were all so great and wanted me to experience everything that I possibly could. They let me change his diaper that first night but didn't want him to try eating just yet. After I held him for a while I went back to my room. My phone rang about 8 pm and one of the Nurses from NICU said that a Genetic Doctor was in the NICU and wanted me to come down.
I walked in and Dr. B (the Genetic Doctor) looked at me and said, "Oh, maybe it's not so bad, he looks like you" Excuse me? I sat down, and she began to go over her "findings":
* Skin tag on right chest
* Widely space nipples
* Bell shaped chest
* Thick Wide Tongue
* Coarse fascies - Coarse facies simply means that the facial expressions are coarse, which could represent congenital hypothyroidism or mental retardation
* Severe Hypotonia - Floppy Baby Syndrome - Low Muscle Tone
* Redundant Skin over the neck bilaterally - we would later find out that he had extremely low levels of copper in his body
* Increased elasticity in skin - his skin was so loose you could literally pull it up from his legs
* Ear pit and deformed left ear
* Hypertelorism - is an abnormally increased distance between two organs or bodily parts, usually referring to an increased distance between the eyes and often signs of mental retardation
* Congenital hydronephrosis of both kidneys - oh, yeah, that was the one thing we expected
Wow, that was a lot to take in, I went back to my room, all alone and cried myself to sleep. The next day, I spent as much time in the NICU with him as I could. The kids came up to meet him.
I walked in and Dr. B (the Genetic Doctor) looked at me and said, "Oh, maybe it's not so bad, he looks like you" Excuse me? I sat down, and she began to go over her "findings":
* Skin tag on right chest
* Widely space nipples
* Bell shaped chest
* Thick Wide Tongue
* Coarse fascies - Coarse facies simply means that the facial expressions are coarse, which could represent congenital hypothyroidism or mental retardation
* Severe Hypotonia - Floppy Baby Syndrome - Low Muscle Tone
* Redundant Skin over the neck bilaterally - we would later find out that he had extremely low levels of copper in his body
* Increased elasticity in skin - his skin was so loose you could literally pull it up from his legs
* Ear pit and deformed left ear
* Hypertelorism - is an abnormally increased distance between two organs or bodily parts, usually referring to an increased distance between the eyes and often signs of mental retardation
* Congenital hydronephrosis of both kidneys - oh, yeah, that was the one thing we expected
Wow, that was a lot to take in, I went back to my room, all alone and cried myself to sleep. The next day, I spent as much time in the NICU with him as I could. The kids came up to meet him.
On Sunday, I went home. Anyone who has had to leave a hospital without a baby because either they are in the NICU or they went to be Jesus can you tell you that this by far is one of the worst days of your life. I had 3 other children, I knew it wasn't supposed to be like this. You have a baby, you go home, you have sleepless nights but that is how it is supposed to be. Riding home that day with my flowers and balloons and no baby was an absolute hell. But I had 3 other kids who needed me and I had to quickly adapt to having a baby in the hospital and 3 at home who still needed a Mommy.
The next day my husband went back to work because he wanted to save his PTO for when Ethan came home. The kids went off to school and Anna Claire went to the babysitter and I drove myself to the hospital. Crazy, I know but nothing was going to keep me from him. I would go everyday from 9-2 and come home and get the kids off the bus and Chris would go after work. That is how our days went for 5 long weeks.
Ethan was doing great in the NICU, I was pumping breast milk but they would only allow him one bottle of breast milk a day because his copper levels were so low he needed special formula to make sure he was getting enough copper. He spent his first 5 days in the NICU and was moved to the PCN which is a step down NICU. The nurses had warned us that he might stop eating and would need a feeding tube. Actually, they initially told us he probably wouldn't be able to even take a bottle due to his hypotonia and tongue issue but we proved them wrong at least for the first four days. On the fifth day he stopped taking the bottle, pretty common in preemies and I would quickly learn the rollarcoaster ride that a parent of a preemie gets to take.
We were so glad to be moved to the PCN. It was a much more casual atmosphere and we were put in a little corner with 2 other babies. I spent so much time in the PCN holding and loving on Ethan that I became friends with his roommate Baby L's Mom. We watched out for each other's babies if one of was not there. It was comforting having someone to share your fears and joys with. My Bestest BFF's little girl only spent 2 weeks in the NICU/PCN but we did it together and she was a rock for me. Her older daughter had also been a preemie so she was an experienced preemie Mom. During this time a lot of my friends would call to check on me and I just didn't want to talk to anyone except Baby L's Mom and Anne Marie, it was easy that way, there was no pressure, no questions just support. It was what I needed and am so thankful that God put them in my life at that time.
Everything was going as expected as far as his eating, he would take some from a feeding tube and some from a bottle. We tried breastfeeding but his tounge just couldn't catch on so we decided to stick with the one breastmilk bottle. I had breastfeed all of my other children so this was very hard for me. I really feel like a missed the bonding that a mother has with her baby when she breastfeeds.
Speaking of that cooper situation, I was visiting Ethan on a Sunday when he was about 2 weeks old when the NICU Doctor called me over to her desk to tell me they suspected that Ethan had MENKES. I had never heard of it before, and so I asked her, "What does that mean? Can he take medicine for it? Is there a cure?" She only replied to me, No, it is very bad and most MENKES children do not live to be more than a year old. I signed off on the test to be done by the National Institute of Health and was told it would take up to 14 days. 14 days of pure agony. I researched MENKES and it was bad, really bad. I was back to not wanting to bond anymore with my baby because I was so scared he would die. We prayed and I made deals with God that I never thought I would ever make. I laid in bed at night or at my 4 am pumping sessions begging God to take me instead, don't let him have MENKES, God, just take me.
Ethan's test came back negative for MENKES. Ok, back down on the roller coaster, a week later I was in the PCN with him and he was having a great day. I went home to get some rest, I was home for 15 minutes when my cell phone rang and we quickly went back to the top of the roller coaster. It was the NICU Doctor, Ethan's heart had gone into SVT and he was being rushed back up to NICU. I'm not sure how I got to the hospital, well, actually, I do know, Anne Marie talked me there. She stayed on the phone with me and got me there safely.
More to Come later....
The next day my husband went back to work because he wanted to save his PTO for when Ethan came home. The kids went off to school and Anna Claire went to the babysitter and I drove myself to the hospital. Crazy, I know but nothing was going to keep me from him. I would go everyday from 9-2 and come home and get the kids off the bus and Chris would go after work. That is how our days went for 5 long weeks.
Ethan was doing great in the NICU, I was pumping breast milk but they would only allow him one bottle of breast milk a day because his copper levels were so low he needed special formula to make sure he was getting enough copper. He spent his first 5 days in the NICU and was moved to the PCN which is a step down NICU. The nurses had warned us that he might stop eating and would need a feeding tube. Actually, they initially told us he probably wouldn't be able to even take a bottle due to his hypotonia and tongue issue but we proved them wrong at least for the first four days. On the fifth day he stopped taking the bottle, pretty common in preemies and I would quickly learn the rollarcoaster ride that a parent of a preemie gets to take.
We were so glad to be moved to the PCN. It was a much more casual atmosphere and we were put in a little corner with 2 other babies. I spent so much time in the PCN holding and loving on Ethan that I became friends with his roommate Baby L's Mom. We watched out for each other's babies if one of was not there. It was comforting having someone to share your fears and joys with. My Bestest BFF's little girl only spent 2 weeks in the NICU/PCN but we did it together and she was a rock for me. Her older daughter had also been a preemie so she was an experienced preemie Mom. During this time a lot of my friends would call to check on me and I just didn't want to talk to anyone except Baby L's Mom and Anne Marie, it was easy that way, there was no pressure, no questions just support. It was what I needed and am so thankful that God put them in my life at that time.
Everything was going as expected as far as his eating, he would take some from a feeding tube and some from a bottle. We tried breastfeeding but his tounge just couldn't catch on so we decided to stick with the one breastmilk bottle. I had breastfeed all of my other children so this was very hard for me. I really feel like a missed the bonding that a mother has with her baby when she breastfeeds.
Speaking of that cooper situation, I was visiting Ethan on a Sunday when he was about 2 weeks old when the NICU Doctor called me over to her desk to tell me they suspected that Ethan had MENKES. I had never heard of it before, and so I asked her, "What does that mean? Can he take medicine for it? Is there a cure?" She only replied to me, No, it is very bad and most MENKES children do not live to be more than a year old. I signed off on the test to be done by the National Institute of Health and was told it would take up to 14 days. 14 days of pure agony. I researched MENKES and it was bad, really bad. I was back to not wanting to bond anymore with my baby because I was so scared he would die. We prayed and I made deals with God that I never thought I would ever make. I laid in bed at night or at my 4 am pumping sessions begging God to take me instead, don't let him have MENKES, God, just take me.
Ethan's test came back negative for MENKES. Ok, back down on the roller coaster, a week later I was in the PCN with him and he was having a great day. I went home to get some rest, I was home for 15 minutes when my cell phone rang and we quickly went back to the top of the roller coaster. It was the NICU Doctor, Ethan's heart had gone into SVT and he was being rushed back up to NICU. I'm not sure how I got to the hospital, well, actually, I do know, Anne Marie talked me there. She stayed on the phone with me and got me there safely.
More to Come later....
Labels:
NICU MENKES SVT HYDRONEPHROSIS
Sunday, October 4, 2009
Ethan's Story - Part 4 - Sweet Ethan is born
The rest of my pregnancy was filled with stress, doubt and fear. To be brutally honest, I had a hard time bonding with Ethan. I was so afraid that the moment I did, I would lose him. I couldn't bear it, so at times I felt very disconnected from my pregnancy. I wouldn't buy anything, no clothes, no crib, no showers no nothing - that way if something happened I wouldn't have baby reminders at home. Very strange.....but until you have been through it you wouldn't understand! I know I didn't.
I was at the doctor's office every couple of weeks having ultrasounds and check ups to make sure all was OK with Ethan. I would bring my little notebook to take notes, I had to know everything, I needed to know each time exactly what his kidney's measured because I knew that when they got to be 10 cm we were in trouble. The last time Dr. L told me the size I was about 7 months pregnant and they were at 13 cm - I stopped taking notes after that.
This Ultrasound was taken in September, more than 2 months before he was born. Notice all large his belly his and how the 2 kidneys look like big black holes - that is because they were filled with so much urine.
I studied everything I could about kidney disorders. We visited a Urologist at the Children's Hospital and he told us the different disorders that Ethan might have. I knew exactly what to expect when he was born, or at least I thought!
Remember, Anne Marie, my Bestest BFF - she was pregnant also and the same day I went to see the Pediatric Urologist who gave us some grim news, he said that whatever the outcome, our little boy had a very long road ahead of him. Well, she was waiting for me to call her and tell her how the appointment went but when I got into my car that afternoon, she beat me to it and told me she was on the way to the hospital to have an emergency C-section because she was in labor - 6 weeks early.
I would quickly follow her....2 weeks later. One of the things that I had learned in all of my studying was that if I felt delayed movement in the womb I needed to get to the Doctor ASAP. You see when a baby has kidneys that are enlarged, if they get to big they will press upon his lungs and he will be unable to survive in the womb if the pressure becomes to much.
On Monday, December 1, I went in for my normal appointment and told Dr. V that he was not as active as before, they hooked me up for a stress test and everything looked good. Dr. V was a little nervous so she decided to send me over to Ultrasound where Dr. L took a look and said the kidneys were more enlarged than before and my OB (Dr. V) and Perionatologist (Dr. L) decided I would be admitted the next day for Steroid Shots to help strengthen Ethan's Lungs because they thought delivery would be soon. I was 34 weeks along. I spent the night in the hospital and received both sets of shots and we all prayed I could keep him snug in the womb for 48 hours. You see, it takes 48 hours for the steroids to set in. I was released late Wednesday night with instructions to see my Perionatoligst the very next morning. I went in that morning to see my Perionatoligist with my bag packed. In fact, when my husband left for work that morning I told him I wouldn't be home - I knew the next time I slept in my bed I would no longer have Sweet Ethan safe and secure inside of me. I kissed my children goodbye and was scared, very scared. I had been up since 5 am because Ethan was not moving. I ate anything sweet I could get my hands on to get him moving but he was sluggish and I knew that we were at the end of the pregnancy.
I was right. Dr. L took one quick look at the Ultrasound and asked if I wanted an ambulance to take me over to the hospital. I was right across the street from my parents and I had already given my Dad a heads up that I would probably need a ride. Walking to my car with tears in my eyes, I called Chris first and than my Dad and told him I was on my way....
I checked into the hospital, very scared and VERY swollen. One of my good friends had also had the steroid shots when she was in the hospital having her twins so she had warned me that they may make look like the Michelin Man, she didn't lie! I was huge!
I spent the day being monitored and the plan was for induction the next morning. My dear friend Jen (the Michelin Man girl) came by to see me and held my hand and cried with me, I was so very scared, I was scared of the unknown.
The next morning my Mom came and they started my pitocin. I was an absolute mess. I was so afraid of what was going to happen to my poor baby and I was honestly afraid that he might not make it. Would he make it through childbirth? Would he die after he was born? These were all things that the Doctors' had prepared me for. Prepare??? How, actually do you prepare a Mother for that? My labor was quick and fast and Sweet Ethan was born at 12:32 pm with two NICU doctors and a handful of NICU nurses awaiting his arrival. He only needed a little big of oxygen and he was screaming when he came out. They handed him to me and I saw this sweet precious child that I had been so scared of loving....it was over...I was in absolutely in love.
I had been so worried this entire pregnancy about his kidneys, but what we didn't know was that was only the beginning of our problems. The kidneys would end up being on the bottom of the list, a list that was very very long and scary.
More to come later....
I was at the doctor's office every couple of weeks having ultrasounds and check ups to make sure all was OK with Ethan. I would bring my little notebook to take notes, I had to know everything, I needed to know each time exactly what his kidney's measured because I knew that when they got to be 10 cm we were in trouble. The last time Dr. L told me the size I was about 7 months pregnant and they were at 13 cm - I stopped taking notes after that.
This Ultrasound was taken in September, more than 2 months before he was born. Notice all large his belly his and how the 2 kidneys look like big black holes - that is because they were filled with so much urine.
I studied everything I could about kidney disorders. We visited a Urologist at the Children's Hospital and he told us the different disorders that Ethan might have. I knew exactly what to expect when he was born, or at least I thought!
Remember, Anne Marie, my Bestest BFF - she was pregnant also and the same day I went to see the Pediatric Urologist who gave us some grim news, he said that whatever the outcome, our little boy had a very long road ahead of him. Well, she was waiting for me to call her and tell her how the appointment went but when I got into my car that afternoon, she beat me to it and told me she was on the way to the hospital to have an emergency C-section because she was in labor - 6 weeks early.
I would quickly follow her....2 weeks later. One of the things that I had learned in all of my studying was that if I felt delayed movement in the womb I needed to get to the Doctor ASAP. You see when a baby has kidneys that are enlarged, if they get to big they will press upon his lungs and he will be unable to survive in the womb if the pressure becomes to much.
On Monday, December 1, I went in for my normal appointment and told Dr. V that he was not as active as before, they hooked me up for a stress test and everything looked good. Dr. V was a little nervous so she decided to send me over to Ultrasound where Dr. L took a look and said the kidneys were more enlarged than before and my OB (Dr. V) and Perionatologist (Dr. L) decided I would be admitted the next day for Steroid Shots to help strengthen Ethan's Lungs because they thought delivery would be soon. I was 34 weeks along. I spent the night in the hospital and received both sets of shots and we all prayed I could keep him snug in the womb for 48 hours. You see, it takes 48 hours for the steroids to set in. I was released late Wednesday night with instructions to see my Perionatoligst the very next morning. I went in that morning to see my Perionatoligist with my bag packed. In fact, when my husband left for work that morning I told him I wouldn't be home - I knew the next time I slept in my bed I would no longer have Sweet Ethan safe and secure inside of me. I kissed my children goodbye and was scared, very scared. I had been up since 5 am because Ethan was not moving. I ate anything sweet I could get my hands on to get him moving but he was sluggish and I knew that we were at the end of the pregnancy.
I was right. Dr. L took one quick look at the Ultrasound and asked if I wanted an ambulance to take me over to the hospital. I was right across the street from my parents and I had already given my Dad a heads up that I would probably need a ride. Walking to my car with tears in my eyes, I called Chris first and than my Dad and told him I was on my way....
I checked into the hospital, very scared and VERY swollen. One of my good friends had also had the steroid shots when she was in the hospital having her twins so she had warned me that they may make look like the Michelin Man, she didn't lie! I was huge!
I spent the day being monitored and the plan was for induction the next morning. My dear friend Jen (the Michelin Man girl) came by to see me and held my hand and cried with me, I was so very scared, I was scared of the unknown.
The next morning my Mom came and they started my pitocin. I was an absolute mess. I was so afraid of what was going to happen to my poor baby and I was honestly afraid that he might not make it. Would he make it through childbirth? Would he die after he was born? These were all things that the Doctors' had prepared me for. Prepare??? How, actually do you prepare a Mother for that? My labor was quick and fast and Sweet Ethan was born at 12:32 pm with two NICU doctors and a handful of NICU nurses awaiting his arrival. He only needed a little big of oxygen and he was screaming when he came out. They handed him to me and I saw this sweet precious child that I had been so scared of loving....it was over...I was in absolutely in love.
I had been so worried this entire pregnancy about his kidneys, but what we didn't know was that was only the beginning of our problems. The kidneys would end up being on the bottom of the list, a list that was very very long and scary.
More to come later....
Saturday, October 3, 2009
Ethan's Story - Part 3 - Down Syndrome Negative, Now What?
So the very next day, Thursday, we went in for our visit with the Perionatologist and to have a Level 4 ultrasound. As you can imagine, we were very nervous and I remember sitting in the waiting groom and we kept telling each other over and over, it's going to be OK, no matter what we find out - it will be OK. I tried flipping through some of the magazines on the table trying to keep my mind off of the visit. I remember seeing a couple coming out of the Ultrasound area and the husband had his arms around his wife because she was crying. I remember watching a very young, probably 16 or 17 year old girl who was pregnant going in for an ultrasound and coming out all giggly and I remember being a little mad. Funny, how your mind works...
It was finally our turn and the technician came in and rolled the wand around my growing belly and we saw our sweet baby, he was moving, he was kicking - he has to be fine. Actually, we didn't know yet that it was a boy but I asked her in the beginning if she could tell and she said that it was so early, probably not, but she quickly stopped and looked up at us and said "It's a Boy" I started crying because down deep I really wanted another little boy. She spent a long time taking pictures and finally when she was done, she excused herself to get the doctor. When Dr. T came in she was very calm and matter of fact - "your baby boy has 3 markers for down syndrome, a very thick neck, wide hips and very enlarged kidneys, your baby if very very sick, I suggest an amnio right away because looking at the size of his kidneys, he may not survive and you should know what genetic abnormalities he has so that you can make a decision" I remember my heart racing, the tears flowing and my husband holding my hand. Dr. T left the room to give us some time, she wanted to do the amnio right away, as in now and wanted to give us some privacy to make our decision. I remember screaming out "Why God, NO, NO, NO, this is not happening to us" Finally, my husband took control, and calmed me down, I don't remember exactly what he did or what he said but he made it OK and we decided that we would go through with the amnio.
The results of the FISH would be back on Monday so I spent the entire weekend resting from the Amnio and reading everything I could on Down Syndrome. By Sunday, I was in a complete state of calm and I knew that if God had given us a baby with Down Syndrome we could handle it, I had accepted our fate. We had been thinking about naming him Brody but decided we needed a a name that had a good solid meaning. In the Bible Ethan means Strength and Endurance and we knew right away that would be the name of our sweet baby.
Monday came and the call came that our FISH showed negative for Downs Syndrome. What? I was all prepared, the doctor's told us we had a 98% chance of DS? Ok, God, what is going on here? I quickly learned to stop questiong God....
It was finally our turn and the technician came in and rolled the wand around my growing belly and we saw our sweet baby, he was moving, he was kicking - he has to be fine. Actually, we didn't know yet that it was a boy but I asked her in the beginning if she could tell and she said that it was so early, probably not, but she quickly stopped and looked up at us and said "It's a Boy" I started crying because down deep I really wanted another little boy. She spent a long time taking pictures and finally when she was done, she excused herself to get the doctor. When Dr. T came in she was very calm and matter of fact - "your baby boy has 3 markers for down syndrome, a very thick neck, wide hips and very enlarged kidneys, your baby if very very sick, I suggest an amnio right away because looking at the size of his kidneys, he may not survive and you should know what genetic abnormalities he has so that you can make a decision" I remember my heart racing, the tears flowing and my husband holding my hand. Dr. T left the room to give us some time, she wanted to do the amnio right away, as in now and wanted to give us some privacy to make our decision. I remember screaming out "Why God, NO, NO, NO, this is not happening to us" Finally, my husband took control, and calmed me down, I don't remember exactly what he did or what he said but he made it OK and we decided that we would go through with the amnio.
The results of the FISH would be back on Monday so I spent the entire weekend resting from the Amnio and reading everything I could on Down Syndrome. By Sunday, I was in a complete state of calm and I knew that if God had given us a baby with Down Syndrome we could handle it, I had accepted our fate. We had been thinking about naming him Brody but decided we needed a a name that had a good solid meaning. In the Bible Ethan means Strength and Endurance and we knew right away that would be the name of our sweet baby.
Monday came and the call came that our FISH showed negative for Downs Syndrome. What? I was all prepared, the doctor's told us we had a 98% chance of DS? Ok, God, what is going on here? I quickly learned to stop questiong God....
Thursday, October 1, 2009
Ethan's Story Part 2 - Shocking News
Weeks went by and I was in complete and utter shock but sick sick sick. I had never been so sick in my entire life. I had three other children so I knew what morning sickness was but this was different. There were days were I could barely make it out of the bed without getting sick. It was horrible. Now, looking back and talking with other Mother's of "Special" children I have learned that sometimes when a baby has "issues inside the womb" the mother can be very sick.
I went in for my 8 week check and had my ultrasound and everything looked good. I went back at 12 weeks and they asked if I wanted a new screening done, this would check to see if the baby had any signs of downs or other genetic issues. This was a new early test that they had just started doing. I figured that since I had three healthy children and I was only 33 I didn't need it and it wouldn't have mattered anyway, right? I went back at 16 weeks and had my blood work done to check for the usual stuff and the special test that checks for down syndrome. That was on a Monday. On Wednesday, right before I was getting ready to leave the office, my doctor's office called, I saw it on the caller id and immediately my stomach fell, I knew they only called with results if there was a problem. It was my Doctor's Nurse Practitioner and she said "I am calling to tell you that your blood work has come back positive for Down Syndrome, please don't freak out because most of the time these tests are false positives, however, your level is 1-51" Later I found out that 1-51 was actually a pretty high risk number. She instructed me to come in the next day to meet with a Perionatologist and have a Level 4 Ultrasound.
I remember trying to call Chris and for whatever reason, I couldn't get him at home or on his cell. So I called my Bestest BFF, who don't forget was also pregnant at the same time and we had the same Doctor. She somehow got me from my office to my house by calmly talking to me all the way, I don't remember what we talked about but I do remember I couldn't have done it without her. I would quickly learn just how much I would end up needing her.
When I got my home, my wonderful husband did what he always does. He put his arms around me and told me it would be OK and we would get through this. At that moment, it all came back to me, the night sitting on the bathroom floor sobbing like a baby when I found I was pregnant....this was it....this is my fault...I did this ....
More to come later....
I went in for my 8 week check and had my ultrasound and everything looked good. I went back at 12 weeks and they asked if I wanted a new screening done, this would check to see if the baby had any signs of downs or other genetic issues. This was a new early test that they had just started doing. I figured that since I had three healthy children and I was only 33 I didn't need it and it wouldn't have mattered anyway, right? I went back at 16 weeks and had my blood work done to check for the usual stuff and the special test that checks for down syndrome. That was on a Monday. On Wednesday, right before I was getting ready to leave the office, my doctor's office called, I saw it on the caller id and immediately my stomach fell, I knew they only called with results if there was a problem. It was my Doctor's Nurse Practitioner and she said "I am calling to tell you that your blood work has come back positive for Down Syndrome, please don't freak out because most of the time these tests are false positives, however, your level is 1-51" Later I found out that 1-51 was actually a pretty high risk number. She instructed me to come in the next day to meet with a Perionatologist and have a Level 4 Ultrasound.
I remember trying to call Chris and for whatever reason, I couldn't get him at home or on his cell. So I called my Bestest BFF, who don't forget was also pregnant at the same time and we had the same Doctor. She somehow got me from my office to my house by calmly talking to me all the way, I don't remember what we talked about but I do remember I couldn't have done it without her. I would quickly learn just how much I would end up needing her.
When I got my home, my wonderful husband did what he always does. He put his arms around me and told me it would be OK and we would get through this. At that moment, it all came back to me, the night sitting on the bathroom floor sobbing like a baby when I found I was pregnant....this was it....this is my fault...I did this ....
More to come later....
Ethans Story - Part 1 (The Beginning)
So many people have asked me to share our story, so I thought I would start from the beginning...
Jan. 8, 2008
After giving birth to our healthy 3 children we decide we are ready to hang up our baby days and my husband goes in for the "Big V". The procedure goes well, we sign off on the waiver form indicating that the procedure is only 98% effective and we will not sue Dr. B if something goes wrong. We are advised of the next steps, given directions of where to drop off our "samples" and how to gently apply frozen peas for the next 48 hours.
A couple of months go by, we take in our "samples" as directed and await the "go ahead"
April 21, 2008
The lab calls and leaves a message telling us everything looks good, all "samples" are negative we are free to proceed..... Ethan Graham Hamilton is conceived the night of April 21, 2008.
Fast forward to the middle of May
I am eating lunch with a friend at Panera and we are so excited that my Bestest BFF Anne Marie has just found out that she expecting her third child. Jenn and I are already planning her baby shower and than it hits me, sitting in that Panera, sipping on my latte that "I'm late" hmmm, well, it can't be that I'm pregnant because I just got the last bill for the "Big V" and besides the lab told us we were "all clear" Nah, that's not it, nope, not me...right? And I just spent $1,200 to hire a new personal trainer and I've been working out like a dog so that's why I'm so run down. As I'm leaving Jenn laughs and says, "Hey, you should stop by the drug store and get a test, just to make sure, ha, wouldn't it be funny if you were pregnant?" I head back to work and totally forget about the conversation, until I got home that night. After dinner, I jokingly told Chris that I was late and wouldn't it be funny if I was pregnant. He didn't think it was so funny and demands I go to CVS. As I'm walking into the CVS, something takes my breath away and at that very moment I know in fact that I'm pregnant. I rush home and before I'm even done peeing on that stick, two lines quickly appear. I scream, I cry, I am in total hysterics and am crying so uncontrollably that I think I might hyperventilate. My husband puts his arms around me and tells me, "it's all gonna be OK, we can do this, it's gonna be just fine" After crying and screaming and crying some more, I'm sitting on the floor in the bathroom with my hands in my face and I look up at my husband and tell him, "something is wrong with this baby, I know it, I can feel it and it's my fault for acting like this when God has given us this baby for a reason"
I still live with that guilt every single day of my life, knowing how I acted in that moment of God's blessing will haunt me for the rest of my life.....
More to come later!
Jan. 8, 2008
After giving birth to our healthy 3 children we decide we are ready to hang up our baby days and my husband goes in for the "Big V". The procedure goes well, we sign off on the waiver form indicating that the procedure is only 98% effective and we will not sue Dr. B if something goes wrong. We are advised of the next steps, given directions of where to drop off our "samples" and how to gently apply frozen peas for the next 48 hours.
A couple of months go by, we take in our "samples" as directed and await the "go ahead"
April 21, 2008
The lab calls and leaves a message telling us everything looks good, all "samples" are negative we are free to proceed..... Ethan Graham Hamilton is conceived the night of April 21, 2008.
Fast forward to the middle of May
I am eating lunch with a friend at Panera and we are so excited that my Bestest BFF Anne Marie has just found out that she expecting her third child. Jenn and I are already planning her baby shower and than it hits me, sitting in that Panera, sipping on my latte that "I'm late" hmmm, well, it can't be that I'm pregnant because I just got the last bill for the "Big V" and besides the lab told us we were "all clear" Nah, that's not it, nope, not me...right? And I just spent $1,200 to hire a new personal trainer and I've been working out like a dog so that's why I'm so run down. As I'm leaving Jenn laughs and says, "Hey, you should stop by the drug store and get a test, just to make sure, ha, wouldn't it be funny if you were pregnant?" I head back to work and totally forget about the conversation, until I got home that night. After dinner, I jokingly told Chris that I was late and wouldn't it be funny if I was pregnant. He didn't think it was so funny and demands I go to CVS. As I'm walking into the CVS, something takes my breath away and at that very moment I know in fact that I'm pregnant. I rush home and before I'm even done peeing on that stick, two lines quickly appear. I scream, I cry, I am in total hysterics and am crying so uncontrollably that I think I might hyperventilate. My husband puts his arms around me and tells me, "it's all gonna be OK, we can do this, it's gonna be just fine" After crying and screaming and crying some more, I'm sitting on the floor in the bathroom with my hands in my face and I look up at my husband and tell him, "something is wrong with this baby, I know it, I can feel it and it's my fault for acting like this when God has given us this baby for a reason"
I still live with that guilt every single day of my life, knowing how I acted in that moment of God's blessing will haunt me for the rest of my life.....
More to come later!
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