Chilling at the NICU spa
One Month
Two months
First swim!
Monday, June 2, 2014
Month to month
I have no chance of getting caught up on Ruby's whole life so how about I post some highlights and we can just go from there.
Ruby
Trisomy 16
At my 20 week ultrasound, the precious little baby in my tummy was measuring 3 weeks smaller than normal. Normally they would just change the due date, but since this was quite a big gap and I was sure of my dates, Dr. Lunt sent me to the specialist to follow up. They did another ultrasound and everything looked normal, but again she was measuring too small. Dr. Hales decided to run some blood tests as a worse case scenario, but he really didn't think anything was wrong. A couple weeks later while at work I had a few missed calls and I got a voicemail from Dr. Hales to call him on his cell phone as soon as I got the message... bad sign. I called him when I got home and he said that he didn't have good news, some of the test results came back abnormal. The chromosome test indicated that my baby had trisomy 16, the most common cause of early miscarriage and a really rare chromosomal abnormality late term that was not compatible with life. My heart had never hurt so bad. I couldn't sleep. My sweet husband tried to console me and tell me that everything was okay, but I just couldn't see it. This baby that I had been carrying and throwing up for for the last four months was sick. What would I do if she didn't make it. How could I go back to work or to church without my baby. I loved her already. How could she be taken from me.
The next day I went into Dr. Hale's office for an amniocentesis. They tested the baby's amniotic fluid to see if it was really the baby that had trisomy 16 or if maybe, just maybe, the placenta was the only thing affected. Dr. Hales said he had never encountered trisomy 16 in his 20 year career as a maternal medicine specialist. In his research there were very few cases of children with trisomy 16 that survived. If they did, they usually had what was called mosaic trisomy 16, where only some of the cells are abnormal, or placental trisomy 16 where just the placenta was affected. After many prayers and blessings and Christmas break had passed, we got the joyous news that Ruby's DNA was completely normal. At this point because she was measuring small but nothing else seemed wrong, we assumed that Ruby had the placental version of trisomy 16.
Hospital Bed Rest
I continued to go to Dr. Hales for ultrasounds and follow up. It seemed like with every ultrasound she kept getting further and further behind schedule. On February 5th I had an appointment for a doppler to measure blood flow and a non-stress test. I woke up knowing that something was going to happen. I just knew that something was going to go wrong. I thought maybe I was going to have my baby that day. When I got the doppler test done, it showed no diastolic blow flow in Ruby's umbilical cord and that meant being admitted to the hospital for continuous monitoring, hopefully for three more weeks and then we would have her early. My stomach dropped, I didn't know what to think or what to do. I ended up doing a lot of homework, watching the olympics and learning how to crochet baby hats for one of my classes. I had lots of nice visitors that kept the time going by and I got to go on two walks a day. On the night of February 12th, Ruby had quite a few desaturations. On the 13th Dr. Lunt and Dr. Hales said they wanted to wait one more week before I had her, but her ultrasounds weren't looking very good and that night she had big decelerations again. The next morning they came in and said that today was the day! Of course it was Valentine's Day!
Ruby's Birth
Because she was already under stress, the doctors decided I needed a c-section, which is not what I had prepared myself for. Kason was allowed to go in with me, but not until after my anesthesia was done. They wheeled me into the operating room and put me on the skinniest table in the world. I was sure I was going to fall off the side! My sweet nurse Marsha hugged me as the anesthesiologist gave me the spinal block. I kept thinking "don't move, don't move" but the second that needle hit my back I almost jumped off the table. It was so weird to feel my legs go completely numb. They helped me lay back and then my nurse started putting in my catheter. There I was spread eagle with no panties on while like five people are walking around and talking to me. So awkward. The room was cold and I was just looking up at the stark ceiling feeling very strange and alone. Finally Kason came in and held my hand and sat up by my head. They had a sheet draped in front of me so that I couldn't see what was going on, but Kason got to watch the whole thing. They poked my belly and asked if I could feel it, I said yes I can feel your fingers. They continued to poke me a few more times and all of the sudden Kason says "oh my gosh so cool" I asked him what he was talking about and he said they had already cut my stomach open and he could see my insides! I didn't even know they had started! After some serious tugging and table shaking they got my tiny baby out of my belly. She didn't make any noise and she wasn't breathing so they rushed her over to the NICU doctor and nurses next door and Kason went with them. I didn't even get to see her. Tears started rolling down my face and sweet Marsha gently brushed them away. They finished my surgery and took me back to my room to recover. It was so nice to see pictures of her and to hear that she was doing okay. A few minutes after I got back to my room I started itching like crazy! I couldn't stop myself from itching my face it just felt so weird. They gave me some benadryl to hep with the itching and thats when the crazy drowsy drugged version of myself came out. I could tell I was acting weird but I just couldn't help myself.
After a while they took me up to my room on mom and baby and hours later they finally let me go down to see Ruby. It was so overwhelming. My tiny baby girl, just 2 lbs 9 oz, 15.75 in long, was laying in an isolette with an IV and wires and a big cpap in her nose. Just hours ago she had been floating around in my stomach and then there she was away from me. She looked so small and helpless. I didn't know how to help her or comfort her. They said I could touch her but I stroked her instead of using firm pressure and that wasn't what I was supposed to do. I felt so inadequate like I could never care for this tiny baby. I was so scared that she wouldn't be okay.
NICU life
I wanted to spend every hour of the day in the NICU. Every time I left I felt the most gut wrenching guilt. How could I leave my baby behind and go eat. How could I just let her lay there alone with no one there to comfort her. What kind of a mom leaves their baby. The day they discharged me from the hospital and I had to go home without her was one of the hardest things I had ever faced. I just cried and cried and cried. I wasn't supposed to go home without my baby! Ruby was in the NICU for 5 weeks. The things she needed to accomplish before going home were: 1. breathing on her own 2. maintaining her body temperature in an open crib 3. eat all of her meals by mouth 4. be gaining weight. I never thought she was going to make it. Some of the nurses told us she had to be 4 pounds before they would even put her in an open crib, well that didn't happen, she wasn't even 4 pounds when she came home. It was difficult to get her to start nursing, she would just fall asleep! And even when she was nursing I didn't have much milk to give her. The battle to get my milk to come in was one of the most devastating and hard parts of this whole journey. I worked so hard and pumped my life away. I took medications and herbs and still i hardly had any milk. She came home nursing and on bottles of fortified milk to help her gain weight. She was weaned off of cpap onto high flow oxygen and then to room air! I was so happy when she was off of oxygen and we could see her beautiful face. Sadly one day I went into her room in the morning and she was back on oxygen. She came home with oxygen and stayed on it for another month.
Home
After nursing her five times in one day successfully, the doctors decided I could room in with her upstairs and if all went well we could go home in the next couple of days. I was able to nurse her at every feeding and give her a few bottles and after three days of rooming in and finally a little bit of weight gain we were able to go home. It felt like complete bliss to have her home. We could sit and watch TV and eat and go to the bathroom without having to check out of the NICU and leave and then come back and wash our hands and ask a nurse to hold her. We could just finally be us. She had a fifty foot long tube that connected to her oxygen tank and a foot probe with a way too heavy monitor that she was on for the first month at home. It was hard to move her around so we mostly stayed in the living room. When she finally got disconnected it was almost surreal. We could easily walk around with her and take her in the car. She finally got to go in the kitchen! It was definitely hard after she got home. Anyone with a newborn baby can attest to the sleepless delirium that we mothers face. I still feel insecure and inadequate. I have no idea how to be a mom. I don't know how to figure out what she needs or if I am feeding/changing/holding/playing/bouncing her enough. This has definitely been a crazy adventure and a hard journey but it was completely worth it. I love this baby girl with my whole heart and I pray more than anything that I can be enough for her.
At my 20 week ultrasound, the precious little baby in my tummy was measuring 3 weeks smaller than normal. Normally they would just change the due date, but since this was quite a big gap and I was sure of my dates, Dr. Lunt sent me to the specialist to follow up. They did another ultrasound and everything looked normal, but again she was measuring too small. Dr. Hales decided to run some blood tests as a worse case scenario, but he really didn't think anything was wrong. A couple weeks later while at work I had a few missed calls and I got a voicemail from Dr. Hales to call him on his cell phone as soon as I got the message... bad sign. I called him when I got home and he said that he didn't have good news, some of the test results came back abnormal. The chromosome test indicated that my baby had trisomy 16, the most common cause of early miscarriage and a really rare chromosomal abnormality late term that was not compatible with life. My heart had never hurt so bad. I couldn't sleep. My sweet husband tried to console me and tell me that everything was okay, but I just couldn't see it. This baby that I had been carrying and throwing up for for the last four months was sick. What would I do if she didn't make it. How could I go back to work or to church without my baby. I loved her already. How could she be taken from me.
The next day I went into Dr. Hale's office for an amniocentesis. They tested the baby's amniotic fluid to see if it was really the baby that had trisomy 16 or if maybe, just maybe, the placenta was the only thing affected. Dr. Hales said he had never encountered trisomy 16 in his 20 year career as a maternal medicine specialist. In his research there were very few cases of children with trisomy 16 that survived. If they did, they usually had what was called mosaic trisomy 16, where only some of the cells are abnormal, or placental trisomy 16 where just the placenta was affected. After many prayers and blessings and Christmas break had passed, we got the joyous news that Ruby's DNA was completely normal. At this point because she was measuring small but nothing else seemed wrong, we assumed that Ruby had the placental version of trisomy 16.
Hospital Bed Rest
I continued to go to Dr. Hales for ultrasounds and follow up. It seemed like with every ultrasound she kept getting further and further behind schedule. On February 5th I had an appointment for a doppler to measure blood flow and a non-stress test. I woke up knowing that something was going to happen. I just knew that something was going to go wrong. I thought maybe I was going to have my baby that day. When I got the doppler test done, it showed no diastolic blow flow in Ruby's umbilical cord and that meant being admitted to the hospital for continuous monitoring, hopefully for three more weeks and then we would have her early. My stomach dropped, I didn't know what to think or what to do. I ended up doing a lot of homework, watching the olympics and learning how to crochet baby hats for one of my classes. I had lots of nice visitors that kept the time going by and I got to go on two walks a day. On the night of February 12th, Ruby had quite a few desaturations. On the 13th Dr. Lunt and Dr. Hales said they wanted to wait one more week before I had her, but her ultrasounds weren't looking very good and that night she had big decelerations again. The next morning they came in and said that today was the day! Of course it was Valentine's Day!
Ruby's Birth
Because she was already under stress, the doctors decided I needed a c-section, which is not what I had prepared myself for. Kason was allowed to go in with me, but not until after my anesthesia was done. They wheeled me into the operating room and put me on the skinniest table in the world. I was sure I was going to fall off the side! My sweet nurse Marsha hugged me as the anesthesiologist gave me the spinal block. I kept thinking "don't move, don't move" but the second that needle hit my back I almost jumped off the table. It was so weird to feel my legs go completely numb. They helped me lay back and then my nurse started putting in my catheter. There I was spread eagle with no panties on while like five people are walking around and talking to me. So awkward. The room was cold and I was just looking up at the stark ceiling feeling very strange and alone. Finally Kason came in and held my hand and sat up by my head. They had a sheet draped in front of me so that I couldn't see what was going on, but Kason got to watch the whole thing. They poked my belly and asked if I could feel it, I said yes I can feel your fingers. They continued to poke me a few more times and all of the sudden Kason says "oh my gosh so cool" I asked him what he was talking about and he said they had already cut my stomach open and he could see my insides! I didn't even know they had started! After some serious tugging and table shaking they got my tiny baby out of my belly. She didn't make any noise and she wasn't breathing so they rushed her over to the NICU doctor and nurses next door and Kason went with them. I didn't even get to see her. Tears started rolling down my face and sweet Marsha gently brushed them away. They finished my surgery and took me back to my room to recover. It was so nice to see pictures of her and to hear that she was doing okay. A few minutes after I got back to my room I started itching like crazy! I couldn't stop myself from itching my face it just felt so weird. They gave me some benadryl to hep with the itching and thats when the crazy drowsy drugged version of myself came out. I could tell I was acting weird but I just couldn't help myself.
After a while they took me up to my room on mom and baby and hours later they finally let me go down to see Ruby. It was so overwhelming. My tiny baby girl, just 2 lbs 9 oz, 15.75 in long, was laying in an isolette with an IV and wires and a big cpap in her nose. Just hours ago she had been floating around in my stomach and then there she was away from me. She looked so small and helpless. I didn't know how to help her or comfort her. They said I could touch her but I stroked her instead of using firm pressure and that wasn't what I was supposed to do. I felt so inadequate like I could never care for this tiny baby. I was so scared that she wouldn't be okay.
NICU life
I wanted to spend every hour of the day in the NICU. Every time I left I felt the most gut wrenching guilt. How could I leave my baby behind and go eat. How could I just let her lay there alone with no one there to comfort her. What kind of a mom leaves their baby. The day they discharged me from the hospital and I had to go home without her was one of the hardest things I had ever faced. I just cried and cried and cried. I wasn't supposed to go home without my baby! Ruby was in the NICU for 5 weeks. The things she needed to accomplish before going home were: 1. breathing on her own 2. maintaining her body temperature in an open crib 3. eat all of her meals by mouth 4. be gaining weight. I never thought she was going to make it. Some of the nurses told us she had to be 4 pounds before they would even put her in an open crib, well that didn't happen, she wasn't even 4 pounds when she came home. It was difficult to get her to start nursing, she would just fall asleep! And even when she was nursing I didn't have much milk to give her. The battle to get my milk to come in was one of the most devastating and hard parts of this whole journey. I worked so hard and pumped my life away. I took medications and herbs and still i hardly had any milk. She came home nursing and on bottles of fortified milk to help her gain weight. She was weaned off of cpap onto high flow oxygen and then to room air! I was so happy when she was off of oxygen and we could see her beautiful face. Sadly one day I went into her room in the morning and she was back on oxygen. She came home with oxygen and stayed on it for another month.
Home
After nursing her five times in one day successfully, the doctors decided I could room in with her upstairs and if all went well we could go home in the next couple of days. I was able to nurse her at every feeding and give her a few bottles and after three days of rooming in and finally a little bit of weight gain we were able to go home. It felt like complete bliss to have her home. We could sit and watch TV and eat and go to the bathroom without having to check out of the NICU and leave and then come back and wash our hands and ask a nurse to hold her. We could just finally be us. She had a fifty foot long tube that connected to her oxygen tank and a foot probe with a way too heavy monitor that she was on for the first month at home. It was hard to move her around so we mostly stayed in the living room. When she finally got disconnected it was almost surreal. We could easily walk around with her and take her in the car. She finally got to go in the kitchen! It was definitely hard after she got home. Anyone with a newborn baby can attest to the sleepless delirium that we mothers face. I still feel insecure and inadequate. I have no idea how to be a mom. I don't know how to figure out what she needs or if I am feeding/changing/holding/playing/bouncing her enough. This has definitely been a crazy adventure and a hard journey but it was completely worth it. I love this baby girl with my whole heart and I pray more than anything that I can be enough for her.
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