Most of you know that Lizzie's life has not been normal. Well, normal for us but not easy. We have been through a diagnosis of Hydrocephalus, a nervous last few months of pregnancy, 2 weeks in the NICU, multiple cranial ultra sounds and visits to the neurologist, life with a monitor, a surgery, post surgery visits and developmental and physical therapy. Its been a crazy, scary, and amazing 2 years and which has given us a constant reminder of how amazing God is and what He can do.
For most of you this is just a reminder of how faithful God is and for others this is all new, but I just want to share this with you.
This is..
Lizzie's Story.
When we found out we were pregnant with Lizzie we were ecstatic! We hadn't been trying very long so we were happy that we didn't have any trouble or have to wait very long. After about 12 weeks we told family and friends who were also excited for us and we anxiously awaited our little bundle of joy :-)
For the first 20 weeks it was a normal pregnancy, doctor's appointments once a month, normal testing and really no other symptoms than regular pregnancy stuff. In fact it was a pretty easy pregnancy, no severe nausea, food cravings or aversions and no extreme pain. The only hiccup was being diagnosed with gestational diabetes. But after seeing the nutritionist and diabetic counselor and reminding my self it was probably going to go away in a few months it really wasn't so bad. Then we went in for our 20 week ultrasound and everything changed.
It was normal at first. The tech measured Lizzie and fluids etc and then asked if we wanted to know the gender. We said yes and found out we were having our little princess. When we met with the doctor she told me my amniotic fluid was a little high and they wanted to check me again in a about a week. Then we went back my fluid had gone back down but there was a problem with Bean's head. The day is kind of fuzzy so I don't remember if it was the tech who told us or just the doctor. But we were told that there were dark spots on Bean's brain which indicated extra fluid on her brain. We were told that she might need to be delivered early and via c-section to reduce the pressure on her brain and that she would most likely need a shunt to help her brain maintain the fluid level. We were referred to a high risk doctor who had more advanced ultra sound equipment and experience. We were stunned and scared. I was able to hold it together until I got in the car and then, I just lost it. I couldn't believe what was happening and was terrified about what this meant for our little girl. We were so blessed at this time to have such an outpouring of love and support and prayers. I know this is the only way we were able to make it through what we were going through. I can't imagine going through this without God and the support of all our friends and family and their friends who were praying for us.
So in June we met with the high risk doctor who started our appointment with " Tell me everything you found on the internet about this condition." I couldn't help but laugh and fell just a tiny bit better ( there are some scary things on the internet...) The ultrasound revealed that Bean's fluid was mild and that she was still growing and developing correctly. So the doctor informed us that as long as she flipped (haha) she could be born normally and on her own time. I did however need to see him once a week until she was born. In Park Ridge. An hour and a half from home. boo.. I also met with Dr. Ruge who would be her neurologist who basically told me the same things. Funny thing is I never remember asking either doctor how this was caused. They may have told me but I honestly don't remember. I just remember not asking. I think I was too afraid that I had done something and knowing that would have been too much to handle at the time.
After that things calmed down. I went in for stress tests once a week and a couple extra ultrasounds to check her fluid. At 37 weeks she was measuring 9+ lbs so he decided to schedule her C-section- since she never flipped and we scheduled it for August 8th. On August 8th at a bout 7am we met our little girl for the first time and she was beautiful and big (9lbs 7 oz :-)) Everything went well but she was whisked away to the NICU and I was confined to bedrest for 8 hrs. After a couple days I was discharged but Bean had to stay. Leaving that hospital without her was one of the hardest things I've ever done but I knew she was in good hands.
The next couple of weeks were a blur of doctors and days spent in the NICU. At one point she was scheduled for the shunt surgery but right before they started they did one more scan and found her ventricles had gone down in size which meant they were draining fluid better. So we cancelled the surgery. We were told she would stay a few more days and then if her next ultra sound was good she could go home. That was the longest day in the NICU. Just waiting for them to come do the scan and then waiting for the results. But finally she was clear! We got a monitor and monitor training and finally left the NICU.
But we weren't out of the woods yet. We had to go for 3 more cranial ultrasounds and neurologist's visits, one a week later,one 2 weeks after that and the 3rd a month after that. The first 2 were stable but not really improved. Then the 3rd saw her ventricles increase in size and that made the neurologist nervous. So we had to schedule a shunt surgery. Once again I was over whelmed. I had thought we were going to get through without a surgery, but that was not it God's plan. So once again, I pretty much cried all the way home and spent the week scared. But once again God gave us reassurance and blessed us with family and friend's support.
The surgery went well and we were in and out in less than 48 hours. Yay! After the surgery we were able to get rid of the monitor. Another yay! We had to go about 3 more times for post surgery visits and ended up in the ER once when the incision leaked (but were cleared a couple days later- without more surgery). But since then life has felt more normal. After while we got used to the shunt and less afraid of it being bumped. Bean had physical and development therapy for about 6 months after she was born to ensure that the Hydrocephalus didn't cause any delays but in November she was also cleared from that :-)
In October we went back to the neurologist for Bean's one year post surgery visit and she got an A+. Now we don't have to go back until October of this year. We'll do an MRI and a visit to make sure everything is working right. At this visit I was finally able to ask what causes this disorder and what are chances of this happening again are. Without judging why I was asking more than a year later the doctor simply answered " the chances of this happening again are the same as lightning striking the same place twice and there is nothing you can do to prevent it or cause it" Even though I had made peace with our situation, this was so reassuring.
And that's Bean's story, long and complicated and stressful, but also uplifting and full of hope. Lizzie is a constant reminder to me that God is bigger than anything we face. Her situation also helped me realize that I need to rely on God more than my own strength. In this situation there was nothing I could do and that's hard for me. But I have seen in Lizzie, what God can do and I know that it is better than anything I can achieve on my own. Thank you to everyone who prayed (and continue to pray) for us and our Lizzie. Your love and support over the last 2 years means more than you could ever know.
Here are a few pictures of Lizzie's journey :-)
For the first 20 weeks it was a normal pregnancy, doctor's appointments once a month, normal testing and really no other symptoms than regular pregnancy stuff. In fact it was a pretty easy pregnancy, no severe nausea, food cravings or aversions and no extreme pain. The only hiccup was being diagnosed with gestational diabetes. But after seeing the nutritionist and diabetic counselor and reminding my self it was probably going to go away in a few months it really wasn't so bad. Then we went in for our 20 week ultrasound and everything changed.
It was normal at first. The tech measured Lizzie and fluids etc and then asked if we wanted to know the gender. We said yes and found out we were having our little princess. When we met with the doctor she told me my amniotic fluid was a little high and they wanted to check me again in a about a week. Then we went back my fluid had gone back down but there was a problem with Bean's head. The day is kind of fuzzy so I don't remember if it was the tech who told us or just the doctor. But we were told that there were dark spots on Bean's brain which indicated extra fluid on her brain. We were told that she might need to be delivered early and via c-section to reduce the pressure on her brain and that she would most likely need a shunt to help her brain maintain the fluid level. We were referred to a high risk doctor who had more advanced ultra sound equipment and experience. We were stunned and scared. I was able to hold it together until I got in the car and then, I just lost it. I couldn't believe what was happening and was terrified about what this meant for our little girl. We were so blessed at this time to have such an outpouring of love and support and prayers. I know this is the only way we were able to make it through what we were going through. I can't imagine going through this without God and the support of all our friends and family and their friends who were praying for us.
So in June we met with the high risk doctor who started our appointment with " Tell me everything you found on the internet about this condition." I couldn't help but laugh and fell just a tiny bit better ( there are some scary things on the internet...) The ultrasound revealed that Bean's fluid was mild and that she was still growing and developing correctly. So the doctor informed us that as long as she flipped (haha) she could be born normally and on her own time. I did however need to see him once a week until she was born. In Park Ridge. An hour and a half from home. boo.. I also met with Dr. Ruge who would be her neurologist who basically told me the same things. Funny thing is I never remember asking either doctor how this was caused. They may have told me but I honestly don't remember. I just remember not asking. I think I was too afraid that I had done something and knowing that would have been too much to handle at the time.
After that things calmed down. I went in for stress tests once a week and a couple extra ultrasounds to check her fluid. At 37 weeks she was measuring 9+ lbs so he decided to schedule her C-section- since she never flipped and we scheduled it for August 8th. On August 8th at a bout 7am we met our little girl for the first time and she was beautiful and big (9lbs 7 oz :-)) Everything went well but she was whisked away to the NICU and I was confined to bedrest for 8 hrs. After a couple days I was discharged but Bean had to stay. Leaving that hospital without her was one of the hardest things I've ever done but I knew she was in good hands.
The next couple of weeks were a blur of doctors and days spent in the NICU. At one point she was scheduled for the shunt surgery but right before they started they did one more scan and found her ventricles had gone down in size which meant they were draining fluid better. So we cancelled the surgery. We were told she would stay a few more days and then if her next ultra sound was good she could go home. That was the longest day in the NICU. Just waiting for them to come do the scan and then waiting for the results. But finally she was clear! We got a monitor and monitor training and finally left the NICU.
But we weren't out of the woods yet. We had to go for 3 more cranial ultrasounds and neurologist's visits, one a week later,one 2 weeks after that and the 3rd a month after that. The first 2 were stable but not really improved. Then the 3rd saw her ventricles increase in size and that made the neurologist nervous. So we had to schedule a shunt surgery. Once again I was over whelmed. I had thought we were going to get through without a surgery, but that was not it God's plan. So once again, I pretty much cried all the way home and spent the week scared. But once again God gave us reassurance and blessed us with family and friend's support.
The surgery went well and we were in and out in less than 48 hours. Yay! After the surgery we were able to get rid of the monitor. Another yay! We had to go about 3 more times for post surgery visits and ended up in the ER once when the incision leaked (but were cleared a couple days later- without more surgery). But since then life has felt more normal. After while we got used to the shunt and less afraid of it being bumped. Bean had physical and development therapy for about 6 months after she was born to ensure that the Hydrocephalus didn't cause any delays but in November she was also cleared from that :-)
In October we went back to the neurologist for Bean's one year post surgery visit and she got an A+. Now we don't have to go back until October of this year. We'll do an MRI and a visit to make sure everything is working right. At this visit I was finally able to ask what causes this disorder and what are chances of this happening again are. Without judging why I was asking more than a year later the doctor simply answered " the chances of this happening again are the same as lightning striking the same place twice and there is nothing you can do to prevent it or cause it" Even though I had made peace with our situation, this was so reassuring.
And that's Bean's story, long and complicated and stressful, but also uplifting and full of hope. Lizzie is a constant reminder to me that God is bigger than anything we face. Her situation also helped me realize that I need to rely on God more than my own strength. In this situation there was nothing I could do and that's hard for me. But I have seen in Lizzie, what God can do and I know that it is better than anything I can achieve on my own. Thank you to everyone who prayed (and continue to pray) for us and our Lizzie. Your love and support over the last 2 years means more than you could ever know.
Here are a few pictures of Lizzie's journey :-)
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