Hello Everyone... if you're here it's because you're interested in Gwen's story, so I will give you a quick overview of her life prior to today.
Gwen was born on Friday, October 21. 2011, 10:41 PM at only 31 weeks 1 day gestation. I had mildly high blood pressure throughout my pregnancy, but nothing of concern until about 25 weeks. At that point I was being admitted almost weekly for Urine Protein tests which all came back on the high side of normal but normal none the less.
I monitored my BP at home, but no matter how much stress I removed from my life I couldn't keep it low. On October 19th I was admitted for another test and released on the afternoon of October 20th stating everything was within normal range, but to watch my BP and to be on the look-out for "right upper quadrant pain". I went home and went about my boring, nearly bed rest day. My husband was working 3rd shift at the time so after he headed off to work I headed up to bed.
3AM rolls around and I am woken up by the worst pain I've ever experienced. It was just below my ribs on my right side. I tried to put pressure which alleviated it a little or at least seemed like it at the time. I knew i couldn't take anything so I just tried to relax in bed thinking she had stuck a foot in my ribs or something. After a few minutes I remembered the Doctor saying a glass of ice cold water could make baby move so I downed about 32 ounces quickly. Still no relief an hour later. I text my husband and told him as soon as he got home I was heading to the hospital (he had the car with him at work and the hospital was an hour away). I stayed in bed and when I heard the back door open I rushed down the stairs.
At this point I'm throwing up from the pain (it's my reaction to severe pain). He asked if I wanted him to take me, but I said I was okay to drive (which I later got yelled at for by the doctors at the hospital). I arrived and went straight to L&D and because I had become a frequent flier they recognized me and got everything ready.
They took my blood and urine and did an ultrasound. They said that Gwen was still breech and was no where near the pain location. Once my urine tests came back they confirmed my proteins were off the chart. They gave me some medication to lower my blood pressure because I was 208/125 at this time. They were waiting for my blood test results, but were still admitting me anyway. They monitored me throughout the day but could never get my BP lower than 180/110 and said I would likely be staying in the hospital until I delivered. "9 WEEKS!!! Wow!" was all I could think. But every test they ran said Gwen was in no distress, she was resting comfortably, though she hated the HR monitor on my belly so she constantly moved and a nurse had to sit with me all day to keep readjusting so they could keep a watch on her.
Later that evening a doctor came in and began explaining HELLP syndrome to me, which is something I had never heard of before, and have come to find out many other people (including many doctors) haven't heard of it either. The simplest definition I've found is from Wikipedia "HELLP Syndrome is a life-threatening obstetric complication usually considered to be a variant or complication of pre-eclampsia. Both conditions usually occur during the later stages of pregnancy, or sometimes after childbirth. "HELLP" is an abbreviation of the three main features of the syndrome: Hemolysis...Elevated Liver enzymes...Low Platelet count" It turns out that the vomiting wasn't from the pain itself, but a symptom of HELLP.
After the doctor explained HELLP and everything that was going on he proceeded to say that they were going to have to deliver within the next 3-4 days and would have a NICU doctor come in and answer any questions I may have, they were going to start me on steroid shots to try and mature her lungs faster to give her a better chance of survival. At this point I broke down, I wasn't even 32 weeks pregnant, I wasn't due until Christmas and it wasn't even Halloween. Would my baby survive? If she does what kind of life will she have? I was devastated.
At this point my husband had come up with my SD to bring me clothes and some toiletries since I was going to be there awhile. Since the doctor said 3-4 days I sent him home.
The NICU doctor came in moments later along with a nurse to administer my first shot of steroids. She began talking statistics and numbers and possible complications and asked if I had any questions, but all I could say I was no. My head was spinning, I wasn't sure if it was the steroids or the BP meds or the fact my BP was 228/180.
About 30 minutes later the nurse came in to check on me as my BP wasn't getting lower. I told her I was a little dizzy but I didn't think the lights were helping. She asked what I meant and I told her the lights were flickering (it looked more like photography flash, but I knew that wasn't possible). She instantly turned and ran out of the room. A doctor came in and checked my eyes, my BP, and some other things and then said "We have to take the baby now, it's not safe anymore" and I remember grabbing my phone to text Adam and tell him they were taking the baby.
Right as he arrived they started prepping me for a regular delivery. They got the stirrups out, the lights, the mirrors, etc and started to administer Pitocin. Once I realized what was going on, I started to yell "She's breech, she's breech" and the nurse said "no honey they are turned by now" and I just kept yelling "No, she's breech" and so she went and got a portable ultrasound machine to "ease my mind". Sure enough she was breech. They instantly clamped off the Pitocin and gave Adam scrubs to prep for the OR. They did everything they needed to for me (I honestly don't remember much).
My caesarian section was as routine as they come. I do remember feeling like they were moving my lungs around, like I could feel every touch just no pain. It was VERY odd. Adam kept trying to make me laugh to calm me down but I was too freaked out. As soon as they pulled her from me I heard the "It's a girl" and suddenly like 10 people start shuffling around. After they suctioned her I heard a few squeaks which the Doctor said was a great sign. They wheeled her over in the incubator for a brief moment so I could see her before they took her up to the NICU.
From that point I have no memories until the next afternoon, except for a brief moment around midnight when Adam brought me a picture of her from when they finally let him meet her. Then I remember waking up around 2P asking to see her and they said I still wasn't stable and would have to wait until Sunday. Sunday morning rolled around and they said that I had to eat breakfast and lunch and shower and then I could go up. The morning DRAGGED on.
I was released the following Tuesday afternoon and she remained in the NICU 27 uneventful days and was released on November 17, 2011. She had no As/Bs, no ROP, and all her brain scans came back completely normal.
Life was normal, she was hitting every milestone on time or early so we thought we were one of the lucky families. Fast forward to 18 months. I notice she's still not talking like my friends kids (I know, I know you're not supposed to compare children). So I said something to her doctor. He said he wasn't concerned because she was babbling and we'd reassess at her 2 year appointment.
At 21 months she still wasn't talking, just babbling and I KNEW there was something wrong so I called for a developmental evaluation.
They just finished up and it went well. She is developmentally far ahead of her actual age. She was able to identify things in pictures (sleeping, eating, washing, shoes, pants, dog, cat, etc., even things I had no clue she knew) and follow complicated directions to a tee. She scored above her actual age in all categories except speech. They said that she is very smart, affectionate, well mannered and were very impressed with her all around.
The ST noted she doesn't move her tongue or lips much when she does "talk" so she said it's clear that her issue is motor not psychological/developmental. Checked for a tongue tie and there is none.
She did give us some tips until our ST is identified/assigned (she was just the evaluator), like holding objects near our mouth when we name them, speak in a more sing-song tone, repeat things multiple times, identifying everything we're touching//doing, all actions, items, etc. When at meals, identify options and repeat what each item is, "Do you want chips or french fries?" once she picks "You're going to have _____ with lunch." Also they want me to create a food book to help until her speech develops (though I may expand on that and add in options like "Broken" "Play" etc), they suggested taking all the food labels and putting them in a book with the word below it to help her identify what she wants rather than us going through a long Yes/No checklist. We also need to try to get her to imitate things, movements, gestures, sounds. They said once we can get her imitating speech with come quickly.
Their version of speech therapy isn't only them working with the child, it's a family affair. They come in and go about our normal routine 60 minutes a week and show us different ways we can help her learn to speak as well as working with her. We should have our therapist identified within the next week and then our first session should be within the next 2.
We should get our IFSP (Individualized Family Service Plan) in the next few days and it will detail out every part of all 6 categories they evaluated her on as well as our "plan" for her ST.
All in all I am very happy and excited especially to know she is so smart, I already thought so but to have professional confirmation is nice.
Well this is where we are through today and as her sessions happen and things occur I will share.
Gwen was born on Friday, October 21. 2011, 10:41 PM at only 31 weeks 1 day gestation. I had mildly high blood pressure throughout my pregnancy, but nothing of concern until about 25 weeks. At that point I was being admitted almost weekly for Urine Protein tests which all came back on the high side of normal but normal none the less.
I monitored my BP at home, but no matter how much stress I removed from my life I couldn't keep it low. On October 19th I was admitted for another test and released on the afternoon of October 20th stating everything was within normal range, but to watch my BP and to be on the look-out for "right upper quadrant pain". I went home and went about my boring, nearly bed rest day. My husband was working 3rd shift at the time so after he headed off to work I headed up to bed.
3AM rolls around and I am woken up by the worst pain I've ever experienced. It was just below my ribs on my right side. I tried to put pressure which alleviated it a little or at least seemed like it at the time. I knew i couldn't take anything so I just tried to relax in bed thinking she had stuck a foot in my ribs or something. After a few minutes I remembered the Doctor saying a glass of ice cold water could make baby move so I downed about 32 ounces quickly. Still no relief an hour later. I text my husband and told him as soon as he got home I was heading to the hospital (he had the car with him at work and the hospital was an hour away). I stayed in bed and when I heard the back door open I rushed down the stairs.
At this point I'm throwing up from the pain (it's my reaction to severe pain). He asked if I wanted him to take me, but I said I was okay to drive (which I later got yelled at for by the doctors at the hospital). I arrived and went straight to L&D and because I had become a frequent flier they recognized me and got everything ready.
They took my blood and urine and did an ultrasound. They said that Gwen was still breech and was no where near the pain location. Once my urine tests came back they confirmed my proteins were off the chart. They gave me some medication to lower my blood pressure because I was 208/125 at this time. They were waiting for my blood test results, but were still admitting me anyway. They monitored me throughout the day but could never get my BP lower than 180/110 and said I would likely be staying in the hospital until I delivered. "9 WEEKS!!! Wow!" was all I could think. But every test they ran said Gwen was in no distress, she was resting comfortably, though she hated the HR monitor on my belly so she constantly moved and a nurse had to sit with me all day to keep readjusting so they could keep a watch on her.
Later that evening a doctor came in and began explaining HELLP syndrome to me, which is something I had never heard of before, and have come to find out many other people (including many doctors) haven't heard of it either. The simplest definition I've found is from Wikipedia "HELLP Syndrome is a life-threatening obstetric complication usually considered to be a variant or complication of pre-eclampsia. Both conditions usually occur during the later stages of pregnancy, or sometimes after childbirth. "HELLP" is an abbreviation of the three main features of the syndrome: Hemolysis...Elevated Liver enzymes...Low Platelet count" It turns out that the vomiting wasn't from the pain itself, but a symptom of HELLP.
After the doctor explained HELLP and everything that was going on he proceeded to say that they were going to have to deliver within the next 3-4 days and would have a NICU doctor come in and answer any questions I may have, they were going to start me on steroid shots to try and mature her lungs faster to give her a better chance of survival. At this point I broke down, I wasn't even 32 weeks pregnant, I wasn't due until Christmas and it wasn't even Halloween. Would my baby survive? If she does what kind of life will she have? I was devastated.
At this point my husband had come up with my SD to bring me clothes and some toiletries since I was going to be there awhile. Since the doctor said 3-4 days I sent him home.
The NICU doctor came in moments later along with a nurse to administer my first shot of steroids. She began talking statistics and numbers and possible complications and asked if I had any questions, but all I could say I was no. My head was spinning, I wasn't sure if it was the steroids or the BP meds or the fact my BP was 228/180.
About 30 minutes later the nurse came in to check on me as my BP wasn't getting lower. I told her I was a little dizzy but I didn't think the lights were helping. She asked what I meant and I told her the lights were flickering (it looked more like photography flash, but I knew that wasn't possible). She instantly turned and ran out of the room. A doctor came in and checked my eyes, my BP, and some other things and then said "We have to take the baby now, it's not safe anymore" and I remember grabbing my phone to text Adam and tell him they were taking the baby.
Right as he arrived they started prepping me for a regular delivery. They got the stirrups out, the lights, the mirrors, etc and started to administer Pitocin. Once I realized what was going on, I started to yell "She's breech, she's breech" and the nurse said "no honey they are turned by now" and I just kept yelling "No, she's breech" and so she went and got a portable ultrasound machine to "ease my mind". Sure enough she was breech. They instantly clamped off the Pitocin and gave Adam scrubs to prep for the OR. They did everything they needed to for me (I honestly don't remember much).
My caesarian section was as routine as they come. I do remember feeling like they were moving my lungs around, like I could feel every touch just no pain. It was VERY odd. Adam kept trying to make me laugh to calm me down but I was too freaked out. As soon as they pulled her from me I heard the "It's a girl" and suddenly like 10 people start shuffling around. After they suctioned her I heard a few squeaks which the Doctor said was a great sign. They wheeled her over in the incubator for a brief moment so I could see her before they took her up to the NICU.
From that point I have no memories until the next afternoon, except for a brief moment around midnight when Adam brought me a picture of her from when they finally let him meet her. Then I remember waking up around 2P asking to see her and they said I still wasn't stable and would have to wait until Sunday. Sunday morning rolled around and they said that I had to eat breakfast and lunch and shower and then I could go up. The morning DRAGGED on.
I was released the following Tuesday afternoon and she remained in the NICU 27 uneventful days and was released on November 17, 2011. She had no As/Bs, no ROP, and all her brain scans came back completely normal.
Life was normal, she was hitting every milestone on time or early so we thought we were one of the lucky families. Fast forward to 18 months. I notice she's still not talking like my friends kids (I know, I know you're not supposed to compare children). So I said something to her doctor. He said he wasn't concerned because she was babbling and we'd reassess at her 2 year appointment.
At 21 months she still wasn't talking, just babbling and I KNEW there was something wrong so I called for a developmental evaluation.
They just finished up and it went well. She is developmentally far ahead of her actual age. She was able to identify things in pictures (sleeping, eating, washing, shoes, pants, dog, cat, etc., even things I had no clue she knew) and follow complicated directions to a tee. She scored above her actual age in all categories except speech. They said that she is very smart, affectionate, well mannered and were very impressed with her all around.
The ST noted she doesn't move her tongue or lips much when she does "talk" so she said it's clear that her issue is motor not psychological/developmental. Checked for a tongue tie and there is none.
She did give us some tips until our ST is identified/assigned (she was just the evaluator), like holding objects near our mouth when we name them, speak in a more sing-song tone, repeat things multiple times, identifying everything we're touching//doing, all actions, items, etc. When at meals, identify options and repeat what each item is, "Do you want chips or french fries?" once she picks "You're going to have _____ with lunch." Also they want me to create a food book to help until her speech develops (though I may expand on that and add in options like "Broken" "Play" etc), they suggested taking all the food labels and putting them in a book with the word below it to help her identify what she wants rather than us going through a long Yes/No checklist. We also need to try to get her to imitate things, movements, gestures, sounds. They said once we can get her imitating speech with come quickly.
Their version of speech therapy isn't only them working with the child, it's a family affair. They come in and go about our normal routine 60 minutes a week and show us different ways we can help her learn to speak as well as working with her. We should have our therapist identified within the next week and then our first session should be within the next 2.
We should get our IFSP (Individualized Family Service Plan) in the next few days and it will detail out every part of all 6 categories they evaluated her on as well as our "plan" for her ST.
All in all I am very happy and excited especially to know she is so smart, I already thought so but to have professional confirmation is nice.
Well this is where we are through today and as her sessions happen and things occur I will share.
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