Here are the birth stories of our 3 children:
Caleb’s story starts at 20 weeks gestation. I had an AFP test that showed that our baby could have spina bifida. The ultrasound tech noticed that his head was long & flat (squished). I was sent to a doctor in Wichita (a perinatologist). She told us that I had a placental abruption that healed its self & that the placenta was not working properly or making amniotic fluid (that is why his head was flat on the sides - he only had a dime sized amount of fluid). She also told us that baby’s that have abruptions at 20 weeks are severely brain damaged & that our baby would be in a vegetative state, if he survived to birth. She suggested (insisted) that we abort him. We told her that we didn’t care what was wrong with him & that we didn’t want to be given the ‘suggestion’ of abortion again. We would have nothing to do with taking the life of a child that GOD had given us.
I was put on bed rest at home to try to get more amniotic fluid, but it didn’t work. Being that we refused to see a geneticist & that we kept refusing to abort our son, she sent us to another doctor in the same building & he was just as negative as the first ‘specialist’. I received steroid shots at 24 weeks to mature his lungs. I started bleeding at 25 weeks & went to our local hospital in Newton, (where we lived at the time). By the time I got there the bleeding had stopped, so I was sent home. Shortly after my husband left to go back to work, the bleeding started again. I was scared, so I started calling hospitals & I was told (by all but one) that there was nothing that they could do. The one that told me to come in to be checked was Wesley Medical Center (WMC) in Wichita. So my husband came home & took me to Wesley. I was checked, but the doctor couldn’t see where the bleeding was coming from. So I was observed overnight. I was dismissed the next morning as the bleeding had stopped. After I was dismissed we were taken on a tour of the NICU (Neonatal Intensive Care Unit), because my doctor knew our son would be premature.
I had an appointment with the 2nd ‘specialist’ & was told that there was nothing wrong & that the bleeding is ‘normal’ (it is not normal to bleeding during pregnancy). I was told that I could come in for daily non-stress tests & that they could not do anything for the bleeding. So I had myself admitted to Wesley Medical Center. While there we found out that we were having a boy (from an ultrasound), that he had no fluid & that I had gestational diabetes. I was there on strict bed rest for 3 weeks because there was a chance that I could have a prolapsed cord (I never did) because I had PROM (premature rupture of membranes). For those 3 weeks I bled constantly (moderately to heavily), had daily non-stress tests, had weekly ultrasounds, received a second set of steroids shots (to mature his lungs) & had contractions off & on that were controlled with anti-histamine (Benadryl).
At 2:20 pm on October 4th, 2001 I started having contractions during my daily non-stress test. I was taken to Labor & Delivery (LDR) where I was given IV Benadryl to try to stop the contractions, (all it did was knock me out between contractions). After 6 hours of being observed (& never dilating) my heart rate & blood pressure shot up & Caleb’s heart rate shot up. It was decided that I had an intra-uterine infection & that Caleb needed to come out. I was given a choice to have a vaginal birth or a c-section. I chose a c-section because I knew he would have a lesser chance of brain bleeds. Caleb was born by ‘urgent’ c-section at 7:58 pm, he weighed 2 lbs. 6.1 oz. & was 13 1/2” long. At birth he let out a tiny cry (like a kitten). Then he was intubated & received surfactant therapy. His apgar scores were: 6 at 1 minute & 9 at 5 minutes.
Caleb was in the hospital for a total of 67 days, (54 days in the NICU at Wesley Medical Center & 13 days at Newton Medical Center). He had awesome nurses & a neonatologist that we just loved. He had the normal ups & downs of the NICU: infections, breathing problems, A’s & B’s (apneas & bradycardias), reflux, a PICC line (they ran out of places for his IV & they couldn’t get them in his legs or feet), blood transfusions & lots of tests (including a spinal tap). He was diagnosed with rigid congenital hip dysplasia of his right hip at 1 week old & we were told that it would require an open reduction surgery to correct it. He was diagnosed with a PFO (a hole between the upper chambers of the heart that normally closes after birth). This closed on its own. He also got NEC (necrotizing enterocolitis- this was his 1st infection) that resolved after receiving medication & having his feedings taken away. He never had any brain bleeds & he came home 15 days before his due date (he was due on 12-25-01) on a ‘wiff’ of oxygen, an apnea monitor, a pulse oximeter, reflux medication & vitamin drops.
Caleb got off oxygen & his monitors after about 1 month at home. We attempted a pavlic harness with a different orthopedist (in Wichita). After it failed to work we chose to drive many hours to go to the orthopedist who saw him in the NICU (he had moved to Missouri).
At 7 months old (4 months adjusted age) Caleb had an open reduction surgery on his right hip. He had a spica cast for 10 weeks & a rhino harness for another 9 weeks. He also had physical, speech & occupational therapies from when he came home until he was 6 years old.
Today Caleb is a normal, healthy boy. He runs, jumps & climbs everything in site! He is very smart & a very talented violinist. The LORD has truly blessed us!
(After all he was supposed to be a vegetable!)
UPDATE 2012: Caleb had 2 more surgeries the summer of 2012: a femoral osteotomy (they cut out a wedge of his femur bone, rotated his hip down to a normal angle (120-130 degrees) & screwed a metal rod to the outside of his femur bone to stabilize it) & a temporary growth plate arrest (using one 8-plate & 2 screws on each side of his upper growth plate) in his left knee (this will help his 1” leg length discrepancy – his right leg is 1” shorter than his left, this was caused by a growth plate in his right hip being damaged after his 1st surgery as its blood supply was severely affected). He will have all his hardware removed either when he stops growing or if his right leg begins to grow longer than his left.
UPDATE 2013: Caleb's right leg is now only 1/2" shorter than his left & he can now wear normal shoes without a lift! I believe he was 5 years old when he got his first lift.
Alexia’s story starts with a normal pregnancy, until 28 weeks gestation. A routine ultrasound showed that our baby was the size of a 17-20 weeks baby & that our baby had gastroschisis (intestines on the outside of the body). After finding out that our baby would need a major surgery after birth my husband became a believer in Jesus Christ (& a Christian like I am). Then I had many ultrasounds, saw a high risk doctor (in Garden City where we lived at the time), saw an awesome perinatologist in Wichita (different from the ones I saw with Caleb) & had an amniocentesis. The perinatologist told us that our baby had amniotic band syndrome (ABS), that it has many different names & that because of the ABS she would not be able to live outside of my womb. We were told that her form of ABS was rare as it wrapped around her chest just under her heart. This band kept her lungs from forming past 17-20 weeks (she would not be able to breath after birth), in turn causing her heart to take up 75% of her chest (her heart was completely normal, but her chest was so small). We were given the normal options: continue the pregnancy until labor started (or she died) or an abortion. Again we chose to carry her no matter what her problems were. God had blessed us with another child & her short little life was precious. We wanted to enjoy every moment we had with her until the LORD took her home.
The amniocentesis showed that our baby had perfect genes, that she was a girl & that all her problems were caused by the ABS. Being that all her problems were from the amniotic band syndrome (ABS) there was only a 1% chance that we would have another baby with ABS. Alexia also had: most of her organs on the outside of her body (on her right side), her chest was flat on all sides (it looked like a trapezoid - a triangle with the top cut off), she had a 90 degree curve in her spine above her pelvis (her pelvis & legs were on her left side), both of her feet were severely clubbed & she had no external genitalia. I received steroid shots to mature her lungs, just in case she did have a chance of survival. However there was also a chance that the band could get so tight that she should die before birth. We were also told that 10-15 minutes after birth she would turn gray & her heart would stop.
After the shock wore off (& denial set in) we started planning for her arrival & her funeral. I bought pink fabric & made her a silky blanket & a pink stuffed bunny to be buried with (it was a miniature version of a bunny that I had made for Caleb before he was born & it was his favorite lovey). We visited funeral homes, chose a beautiful pink gown with roses down the front for her to be buried in, picked out her casket, we made a cast of my belly, chose her flowers: pink baby carnations with white baby’s breath, planned the funeral how we wanted it (a grave side service then a memorial service at our church) & bought her a plot at the cemetery (we bought her plot a week before I went into labor & it was the last thing we needed to do to finalize all our plans).
On April 2, 2004 I woke up from a nap with a back ache. It came in waves & I thought that she had moved wrong & that she was pinching a nerve in my back or pelvis. I couldn’t get comfortable in any position, so I walked around & helped my husband paint a book case he had made for our son. I called a friend of mine & she said that I could be in back labor & dilate without knowing it. After 2 hours I began to get nauseous. I told my husband that is was probably another false alarm & to let Caleb sleep (he was 2 1/2 years old & napping). Then I drove myself to the hospital (a few blocks from our house). Shortly after getting there I threw up, my water broke & the contractions moved from my back to my front all at the same time. At about the same time Caleb woke up & was frantically searching the house for me. I called my husband & told him to call some of my friends to see who could watch Caleb & to get to the hospital because they were prepping me for a c-section. I was checked & I was still at 1 cm (I had been at 1 cm for a few weeks). It took about 6-8 tries (& 2 nurses) to get an IV in my hand/arm because my veins kept collapsing.
Then I was wheeled to the OR. They gave me an epidural & tilted the bed (so my head was down) because my doctor didn’t want me to rupture & the epidural was taking too long to work. When I was finally numb my doctor started the c-section then he saw that my uterus had ruptured from my previous (classical/vertical) c-section (however I had not started bleeding out) & that Alexia was trying to be born through the rupture. Alexia was born at 36 weeks gestation at 7:27 pm. She weighed 3 lbs. 12.4 oz & she was 17 1/2” long (from head, around the curve in her spine & to her feet –I measured her at the funeral home because the nurse measured her at birth as 10" (from her head to the bend in her spine), Caleb was 13.5” at birth & I knew she was much longer). My husband got to see her open her eyes twice in the operating room before she closed them forever. She also tried to move her legs, but she was paralyzed & she tried to take a breath, but she couldn’t (she never struggled to breathe). After the pediatrician looked her over & cleaned her up a little I got to hold her in the OR & I got to see her move her mouth. It was so exciting to see her move, as I never thought she would move at all. My husband went with Alexia as the nurse took her to the nursery to take her measurements (with our permission). The c-section went well until the doctor was stapling my skin & hit a blood vessel (this caused an abscess that had to be reopened, then I had to clean with peroxide (inside) & pack it for 2 weeks - I also ended up with a spinal headache. Both of these occurred after her funeral).
After my surgery Alexia & I were taken to my room. The nurses gave us two pink hats (I asked for a second hat as the first was beautifully knitted, but much too small for her) & lots of warmed blankets to keep her comfortable. Our pastor came to visit along with our friends who brought Caleb to see his sister. A pastor from the hospital brought us a beautifully painted heart shaped memory box. It had a pink gown, a baby ring & a baby sized stole (for her to wear for a blessing). We held Alexia, talked to her & passed her between myself, my husband & Caleb. There was also pediatrician in the room with us who checked her heart every few minutes. At 8:43 pm I had a feeling that she was gone. I asked my husband who was holding her if she was gone & both him & the pediatrician nodded their heads. Alexia lived for 1 hour & 16 minutes without ever taking a breath. We put the stole on her & our pastor said a prayer & shortly afterwards our parents arrived (they had to drive 3 1/2 hours). After everyone left to get some sleep my husband & I got some time alone with our daughter. A nurse took her to give her a bath & take hospital baby photos of her all dressed up. We had not dressed her until after she died because we didn’t want her to be cold or uncomfortable. I spent a lot of time combing her hair, looking her over & taking photos of her. My nurse took her (at about 4 am) to the nursery so I could get some sleep (I didn’t want to let her go, but I really needed some sleep).
The next morning (about 7 or 8 am) my nurse brought her back to me & we took hand & foot impressions & castings. I dressed her in a few different outfits & we took many photos of her. We also took hair clippings & put some in a cross shaped urn necklace so I could always have a piece of her with me (my husband has one too). More family & friends came to visit & see Alexia. My doctor came to check on me & he brought me a single red rose. The hardest part was when the funeral home director came to pick her up.
I was dismissed from the hospital after 36 hours (he gave me the choice to stay another night or go home & I chose to go home) on doctors orders to take it easy (plus I was doing everything I needed to, to be released). He was a very understanding doctor & he knew that I would rest better at home. At home I fixed Alexia’s burial dress by cutting down the very long (newborn sized) sleeves to the length of her little arms & then I sewed them with ribbon in the cuffs to snug them to her tiny wrists.
At the funeral home I got to dress her for the last time, wrap her in her blanket, take more photos, have a little more time with her (this is when I measured her) & placed her in her tiny casket The next day at the viewing I held Alexia’s tiny hand & rubbed it while our friends & family came to see her (her hand got warm enough that you would have thought she was alive). The day after was the funeral. The grave side service was beautiful & my husband got to hold her casket though the entire service before laying her casket on the ground for burial. The memorial service was wonderful. Everyone release white balloons with a little tag on each one with her name & who she was (daughter of Kim & Zach, sister of Caleb, ect.). My husband & I released a huge (3 foot in diameter) pink balloon that had ‘It’s A Girl’ written all over it in white, with a laminated photo of her tied to it & a return address on the back (we have not heard anything nor have we received her photo from the balloon) .
The LORD answered our prayers. We prayed for: her healing (she is healed in heaven), that we wouldn’t have to choose the day of her birth (& death) & that we could hold her while she was alive (we got to hold her & pass her between myself, my husband & our 2 1/2 year old son Caleb until she died in her father’s arms & went to Our Heavenly Father).
Our 2nd son Eli was born December 19, 2005 at 39 weeks gestation (full-term) after a normal pregnancy (despite having gestational diabetes again) & a scheduled c-section. He was 7 lbs. 15.1 oz. & 21” long.
The only thing that happened during this c-section was, my doctor did a bikini cut c-section through my uterus & tried to avoid my very weak classical scar (that had ruptured with Alexia). He was able to get Eli’s head & one arm out through the bikini cut, then when he tried to get Eli’s other arm out my classical scar ripped all the way up. So my doctor had to sew up the upside down ‘T’ in my uterus. After that my doctor told me not to have anymore children because my uterus was/is so weak that both me & another baby could die. He also told me that my uterus is webbed in place by scar tissue (so much that he could not find my tubes to tie them & he told me I would need another c-section if I ever wanted or needed a hysterectomy). Also my doctor & Eli’s doctor told me that they had never seen so much scaring in their careers.
Eli had to spend 1-2 days in the ICU to get his blood sugar straightened out since I had gestation diabetes (& after birth his extra sugar supply was cut off). He came home with me at 3 days old. About a week later he got a bili blanket to use at home for a few days to help his jaundice.
Eli is a very smart, normal, healthy boy who does everything his brother does!