Monday, June 20, 2011
Tuesday, June 14, 2011
Addie's NICU Stay Part 3 and Coming home!
After I came home, the days ran together. Sleep, eat, pump, drive to the hospital for her 3pm feeding, come home, eat, pump, sleep, go back for her 9 or midnight feeding, sleep, eat, pump.
We did this for 5 days. Addie started gaining weight, slowly. Which if you consider how much they were draining out of her head, it was impressive.
Her feeds were up to 120mls (4 ozs) at most and an average of 80mls most times. We did have an upsetting feed one night where she basically threw everything back up. We think she overate. They were adding powdered formula to my expressed breast milk and she didn't like it very well. They started her back on antibiotics because they didn't like the way her incisions were looking, though the neurosugeon's PA said they looked great to them.
On Monday, May 31st, she had her follow up MRI. This was supposed to save us an extra outpatient MRI and visit to George's office. The idea was to get it done while she was still in the hospital to make it easier on her and us. And it would've worked.
Adam and I visited late that night (my second visit of the day) and Dr. Dekowski was the one on call. He came to her bedside and I could tell by the look on his face that something wasn't quite right. I remember looking at her for reassurance that it couldn't be that bad. The MRI showed the shunt was working, the ventricles were smaller.... BUT there were new brain bleeds that had not been there on her first MRI. Dr. Dekowski was pretty frank about being puzzled about them. If she had been a preemie they wouldn't have been as surprised. The good news was that her bleeds were intercranial and not interventricular. Interventricular brain bleeds are bad for people with shunts because the blood junks up the shunt track, which causes the shunt to fail. Dr. Dekowski showed us the MRI. It felt very strange, following the neonatologist through the back STAFF only doors to view MRI images at midnight. The bleeds were very evident and looked large to my layman's eye. Dr. Dekowski had spoken to Dr. George, and George was perplexed as well. He did say he had seen it before, though rarely.
We spoke with Dr. Dekowski, standing in front of the computer with Addie's brain images pulled up, about her going home. She had lost weight that day, most likely because the sedation had made her sleepy and she had slept through her noon feeding. Dr. D said she could technically go home the next day but he wanted to see her back on the upswing weight wise. He hoped by Wednesday, June 1st.
I went back the next day for a feeding and to have some cuddle time. I brought the carseat carrier with me so they could do the car seat study. For those not familiar with that practice, Addie had to sit in her carseat for a certain number of minutes and they watched her vitals closely to make sure she could tolerate the position sitting in a car seat requires. The main concern with Addie regarding the carseat, was the size of her head potentially causing her to have trouble breathing. We didn't want any desats. She passed the test with flying colors that evening.
Adam and I went back again that night and I spoke to the neonatologist on call about Addie's care. I basically said that while we were extremely grateful for the level of care that Addison was receiving at St. David's, I was beginning to see where she would benefit from a consistent care giver. It seemed like we had a different nurse every shift. We had been bumped to a step down bay a few days before and she was at 1:4 nurse to patient ratio and we never saw the same nurse twice. I caught the nurses not following her feeding plan, using the wrong type of nipple on her bottles, etc. I was her mom. I was slowly gaining confidence in handling her and my mama bear instincts were starting to kick in. In the beginning, I very much had the attitude that they knew what was best for her medical care and that we would support (most of) anything they decided on. But we were so close to going home, and all we were waiting on was for her to gain weight. Neuro had released her with the understanding that we'd follow up with a MRI with contrast for the bleeds. And I was good at fattening up babies! I wanted her home. Where I could handle her needs. Her needs were needs I knew how to meet. And it changed my perspective. I got a little less patient with the doctors. I was nice... I'm always nice. The neonatologist after I was finished outlining my newfound position, basically said well done on handling it tactfully. I feel for the people that work in the NICU. I get that they are sometimes made out to be the bad guys and that was by no means my feelings. I was just ready to take care of my baby.
I went back the next day, June 1st, by myself, trying desperately not to get my hopes up. I had called at 1:30am to check on Addie, mainly to get an update on her midnight weight check. And she had GAINED!! I was thrilled and so cautiously optimistic as to what that meant. The neonatologist I had spoken with at length the day before had said even if she just held her own weight, she'd be happy. I was so scared to be hopeful but hope filled me nonetheless.
I scrubbed in for what I prayed would be the last time and went to sit at Addie's bedside. Her noon feed was coming up and I was ready with fresh milk!
The first glimpse I had of Addison, walking up to her NICU bed for the last time.
The nurse, yet another new face, walked up and we were talking about her latest orders and notes etc. She mentioned her weight gain and I said that I knew, having called in the middle of the night. She told me she still didn't have a discharge order but she had been told she was going home that day. Sweet words to my ears.
I stayed all afternoon. Sat and held her. It was like I refused to put her down for fear they would change their minds. The one time I did put her down, she wasn't very happy. She was just as ready to come home as we were to have her there.
We had been asking about what we needed to do for discharge on our end for weeks and were told this day that we both had to take an infant CPR class before we could take her home. Nice to know on such short notice. Adam had just been there the day before and we could have done it then. I texted Adam, who was at work, if he could get off work to come do the class so we could take her home. He later told me he told his boss that if he wanted to stay married, he had to take a CPR class so we could bring Addie home that day.
He arrived around 3:30pm and we took the class at 4pm. Dr. Cho, another neonatologist came by and said we were good to go. He thanked us for making things easier on them, having all our appointments already set up and having the carseat study done already.
It was a little surreal. The feeling of freedom that comes after having to leave her behind so many times.
She was ours now. Not a borrowed baby twice a day. My heart and mind knew that didn't make sense but it was kinda how I felt. We loaded her up in the carseat and Adam went down to pull the car around. Addie's nurse walked she and I and all her stuff down to the car and away we went. It was a fantastic feeling after spending months worrying if she would ever come home.
Adam took me to Jimmy John's for a sandwich. I had been at the hospital all day and hadn't eaten at all. We sat in the car, in the parking lot, while Adam called his mom and I sent out a group to text to family and friends. We hit rush hour traffic on the way home and didn't care.
As soon as the boys had heard Addie might be coming home, there was no nap taking for them.
Many pictures were taken and it was amazing how quickly we settled in.
I had my family of five. In the same room, at the same time for the first time that day. Grayson and Jackson finally got to lay eyes on her in person. Later that night, Jackson got to hold her, on the boppy while I sat beside him on the couch. Within seconds of me handing her to him, he said "She's too heavy!"
Grayson got to hold her the next day. I swear she recognized his voice. She was fussy and she settled for him immediately and went to sleep.
So blessed.
We did this for 5 days. Addie started gaining weight, slowly. Which if you consider how much they were draining out of her head, it was impressive.
Her feeds were up to 120mls (4 ozs) at most and an average of 80mls most times. We did have an upsetting feed one night where she basically threw everything back up. We think she overate. They were adding powdered formula to my expressed breast milk and she didn't like it very well. They started her back on antibiotics because they didn't like the way her incisions were looking, though the neurosugeon's PA said they looked great to them.
Jack shared his monkey with Addie, so she would have something to look at.
On Monday, May 31st, she had her follow up MRI. This was supposed to save us an extra outpatient MRI and visit to George's office. The idea was to get it done while she was still in the hospital to make it easier on her and us. And it would've worked.
We spoke with Dr. Dekowski, standing in front of the computer with Addie's brain images pulled up, about her going home. She had lost weight that day, most likely because the sedation had made her sleepy and she had slept through her noon feeding. Dr. D said she could technically go home the next day but he wanted to see her back on the upswing weight wise. He hoped by Wednesday, June 1st.
I went back the next day for a feeding and to have some cuddle time. I brought the carseat carrier with me so they could do the car seat study. For those not familiar with that practice, Addie had to sit in her carseat for a certain number of minutes and they watched her vitals closely to make sure she could tolerate the position sitting in a car seat requires. The main concern with Addie regarding the carseat, was the size of her head potentially causing her to have trouble breathing. We didn't want any desats. She passed the test with flying colors that evening.
"What the heck is this thing?"
Adam and I went back again that night and I spoke to the neonatologist on call about Addie's care. I basically said that while we were extremely grateful for the level of care that Addison was receiving at St. David's, I was beginning to see where she would benefit from a consistent care giver. It seemed like we had a different nurse every shift. We had been bumped to a step down bay a few days before and she was at 1:4 nurse to patient ratio and we never saw the same nurse twice. I caught the nurses not following her feeding plan, using the wrong type of nipple on her bottles, etc. I was her mom. I was slowly gaining confidence in handling her and my mama bear instincts were starting to kick in. In the beginning, I very much had the attitude that they knew what was best for her medical care and that we would support (most of) anything they decided on. But we were so close to going home, and all we were waiting on was for her to gain weight. Neuro had released her with the understanding that we'd follow up with a MRI with contrast for the bleeds. And I was good at fattening up babies! I wanted her home. Where I could handle her needs. Her needs were needs I knew how to meet. And it changed my perspective. I got a little less patient with the doctors. I was nice... I'm always nice. The neonatologist after I was finished outlining my newfound position, basically said well done on handling it tactfully. I feel for the people that work in the NICU. I get that they are sometimes made out to be the bad guys and that was by no means my feelings. I was just ready to take care of my baby.
I went back the next day, June 1st, by myself, trying desperately not to get my hopes up. I had called at 1:30am to check on Addie, mainly to get an update on her midnight weight check. And she had GAINED!! I was thrilled and so cautiously optimistic as to what that meant. The neonatologist I had spoken with at length the day before had said even if she just held her own weight, she'd be happy. I was so scared to be hopeful but hope filled me nonetheless.
I scrubbed in for what I prayed would be the last time and went to sit at Addie's bedside. Her noon feed was coming up and I was ready with fresh milk!
The first glimpse I had of Addison, walking up to her NICU bed for the last time.The nurse, yet another new face, walked up and we were talking about her latest orders and notes etc. She mentioned her weight gain and I said that I knew, having called in the middle of the night. She told me she still didn't have a discharge order but she had been told she was going home that day. Sweet words to my ears.
I stayed all afternoon. Sat and held her. It was like I refused to put her down for fear they would change their minds. The one time I did put her down, she wasn't very happy. She was just as ready to come home as we were to have her there.
Not happy at being put back in her bed.
We had been asking about what we needed to do for discharge on our end for weeks and were told this day that we both had to take an infant CPR class before we could take her home. Nice to know on such short notice. Adam had just been there the day before and we could have done it then. I texted Adam, who was at work, if he could get off work to come do the class so we could take her home. He later told me he told his boss that if he wanted to stay married, he had to take a CPR class so we could bring Addie home that day.
He arrived around 3:30pm and we took the class at 4pm. Dr. Cho, another neonatologist came by and said we were good to go. He thanked us for making things easier on them, having all our appointments already set up and having the carseat study done already.
It was a little surreal. The feeling of freedom that comes after having to leave her behind so many times.
Her empty NICU bed.
She was ours now. Not a borrowed baby twice a day. My heart and mind knew that didn't make sense but it was kinda how I felt. We loaded her up in the carseat and Adam went down to pull the car around. Addie's nurse walked she and I and all her stuff down to the car and away we went. It was a fantastic feeling after spending months worrying if she would ever come home.
In her carseat, heading home!
Adam took me to Jimmy John's for a sandwich. I had been at the hospital all day and hadn't eaten at all. We sat in the car, in the parking lot, while Adam called his mom and I sent out a group to text to family and friends. We hit rush hour traffic on the way home and didn't care.
We arrived home to a decorated sign on the front door that mom and the boys had been working on all day.
As soon as the boys had heard Addie might be coming home, there was no nap taking for them.
Huge big brother grins!
Many pictures were taken and it was amazing how quickly we settled in.
I had my family of five. In the same room, at the same time for the first time that day. Grayson and Jackson finally got to lay eyes on her in person. Later that night, Jackson got to hold her, on the boppy while I sat beside him on the couch. Within seconds of me handing her to him, he said "She's too heavy!"
Grayson got to hold her the next day. I swear she recognized his voice. She was fussy and she settled for him immediately and went to sleep.
So blessed.
Tuesday, June 7, 2011
Addie's NICU Stay Part 2
Tuesday, May 24 - We visited Addie several times this day. Adam got to hold her in the morning for about 45 mins and gave her a bottle.
They had already bumped her feeds up from 10 mls to 25 mls and then again to 45 mls. She, thankfully, had very few issues with the feeds. We had been told the day after her surgery, before they began feeding her, that she had a delayed swallow reflex. Something that could have been from neurologically damage or from the intubation process or just from being slightly preemie. The risk with a delayed swallow reflex is aspiration and can lead to problems long term that could eventually require a permanent feeding tube. So seeing Addie doing so well with her feeds and them bumping her volume up so quickly was an awesome thing to witness. We did have to feed her side lying for a while and she was on a slow flow nipple but that was all the help she needed.
I got discharged by my ob that evening, but we were able to room in - basically stay at the hospital off the radar. You're there but you're not there. You don't get nurse visits or a room bill. You just sleep in the room they assign you and are on your own. I was very thankful that we were able to do this and planned on staying as long as they would allow. We did have to change rooms from our upgraded suite to a normal hospital room but that was fine. My doctor didn't get to the hospital til 7pm that night, as she was coming from North Austin. Adam had gone home to take a nap so it was just my ob and I. She stayed for an hour visiting! So blessed to have her as my doctor!! We discussed how quickly I could drive as that was a major factor in me going home or not - whether I could get back to the NICU by myself.
After Adam returned from his nap, we went back to the NICU and gave her the 9pm feed and then it was my turn to hold her for an hour. At that time we were only allowed to hold her twice a day, so we each got a turn. We still had to keep her as flat as we could. They had tried to sit her up on Sunday and it had induced tremors so her little system couldn't handle the pressure still. We didn't push them to try sitting her up again. We were content for things to take as long as need be.
Wednesday, May 25 -
We definitely had our routine down by this time. Sleep til 9am. Get up to take pain meds, eat breakfast, pump and then make it to the NICU by her 12pm feed. Back to the room for a late lunch, more meds, more pumping then back for 3pm feed just me while Adam returned home for a nap. Then both of us back after shift change for her 9pm and sometimes midnight feedings. Late dinner. There were several places that delivered around the hospital... as late as 3am!
This was the day that I ate peanut butter crackers while pumping and thought I got crumbs in the milk and had to pour out 90 mls. I nearly cried!! Because I had to toss so much out, Addie surpassed me on volume that day. Which was a wonderful 'problem' to have. They started suplementing formula.
This was also the day that I noticed that I didn't do so well by myself. I was ok as long as I was in the NICU or with Adam. But sitting in the room by myself was when the hormones and gravity of the situation would hit me. Was she doing fabulous, as well as we could of possibly hoped and prayed for? ABSOLUTELY. But it's still a stressful, emotional situation to have a baby in the NICU. Everytime the boys would come visit, I felt torn. When I was with them, I wanted to be home. When I was with Addie in the NICU, I wanted to stay by her side 24/7. I had to give it some real thought and figure out what *I* needed. I knew my kids needed me, all 3 of them. And unfortunately the three of them were not in the same location.
A huge deciding factor was that Adam had to return to work that Friday. And I would be at the hospital - alone - a lot more. I knew I could spend more time in the NICU than I had been, sitting by her bed all day. But at that point... she was still sleeping a lot and there wasn't much I could do for her. And I quickly figured out that her schedule was pretty set. Feeds every 3 hours. I could easily time visits from home to be there for 2 or 3 feeds a day. We were fortunate enough to only live 10 miles from the hospital. So I was seriously leaning toward going home. When your 3 old son asks you to come home, it's very hard to say no. And Jackson was asking everytime he would come visit.
Thursday, May 26 -
We visited in the morning, ate lunch in the room and discussed me going home that night with Adam, took a nap, and went back up for the 9pm feeding. Dr. Dekowski happened to be there that evening and we talked to him about her progress. It was at this point that he said it would be a matter of days, not weeks before she was released. Which was FABULOUS news. They needed to get her feeds up, which was going extremely well and seemed like it would just be a matter of time. Then they needed to see her gain weight (she was still losing because of all the fluid draining from her head). We were told this evening that we could pick her up as much and as often as we liked and that she had been cleared from the neuro docs to be tilted and held upright as she could tolerate. We were ecstatic! Because she could be handled a little less delicately, I was able to nurse her for the first time that night. Which worked out wonderfully.
I was high on love hormones for our trip home. Adam was returning to work the next morning and I knew that me staying overnight alone was not in my best interest. It was hard putting my interest ahead of Addie's but I knew she was in good hands, and I knew that ultimately doing what was best for me would be to her benefit as well, in this situation. She had already surpassed my milk production. I had been walking the bottles down to her after each pumping session but thanks to my cracker crumb concerns, I was way behind. I could just as easily transport her milk in a cooler to her once or twice a day as I could walk it to her four times a day. It wasn't easy, but we left to go home that night.
We hadn't told the boys we were coming home, so we surprised them with our arrival. Was a great feeling to be home after being in the hospital a week, albeit bitter sweet.
They had already bumped her feeds up from 10 mls to 25 mls and then again to 45 mls. She, thankfully, had very few issues with the feeds. We had been told the day after her surgery, before they began feeding her, that she had a delayed swallow reflex. Something that could have been from neurologically damage or from the intubation process or just from being slightly preemie. The risk with a delayed swallow reflex is aspiration and can lead to problems long term that could eventually require a permanent feeding tube. So seeing Addie doing so well with her feeds and them bumping her volume up so quickly was an awesome thing to witness. We did have to feed her side lying for a while and she was on a slow flow nipple but that was all the help she needed.
I got discharged by my ob that evening, but we were able to room in - basically stay at the hospital off the radar. You're there but you're not there. You don't get nurse visits or a room bill. You just sleep in the room they assign you and are on your own. I was very thankful that we were able to do this and planned on staying as long as they would allow. We did have to change rooms from our upgraded suite to a normal hospital room but that was fine. My doctor didn't get to the hospital til 7pm that night, as she was coming from North Austin. Adam had gone home to take a nap so it was just my ob and I. She stayed for an hour visiting! So blessed to have her as my doctor!! We discussed how quickly I could drive as that was a major factor in me going home or not - whether I could get back to the NICU by myself.
After Adam returned from his nap, we went back to the NICU and gave her the 9pm feed and then it was my turn to hold her for an hour. At that time we were only allowed to hold her twice a day, so we each got a turn. We still had to keep her as flat as we could. They had tried to sit her up on Sunday and it had induced tremors so her little system couldn't handle the pressure still. We didn't push them to try sitting her up again. We were content for things to take as long as need be.
Wednesday, May 25 -
We definitely had our routine down by this time. Sleep til 9am. Get up to take pain meds, eat breakfast, pump and then make it to the NICU by her 12pm feed. Back to the room for a late lunch, more meds, more pumping then back for 3pm feed just me while Adam returned home for a nap. Then both of us back after shift change for her 9pm and sometimes midnight feedings. Late dinner. There were several places that delivered around the hospital... as late as 3am!
This was the day that I ate peanut butter crackers while pumping and thought I got crumbs in the milk and had to pour out 90 mls. I nearly cried!! Because I had to toss so much out, Addie surpassed me on volume that day. Which was a wonderful 'problem' to have. They started suplementing formula.
This was also the day that I noticed that I didn't do so well by myself. I was ok as long as I was in the NICU or with Adam. But sitting in the room by myself was when the hormones and gravity of the situation would hit me. Was she doing fabulous, as well as we could of possibly hoped and prayed for? ABSOLUTELY. But it's still a stressful, emotional situation to have a baby in the NICU. Everytime the boys would come visit, I felt torn. When I was with them, I wanted to be home. When I was with Addie in the NICU, I wanted to stay by her side 24/7. I had to give it some real thought and figure out what *I* needed. I knew my kids needed me, all 3 of them. And unfortunately the three of them were not in the same location.
A huge deciding factor was that Adam had to return to work that Friday. And I would be at the hospital - alone - a lot more. I knew I could spend more time in the NICU than I had been, sitting by her bed all day. But at that point... she was still sleeping a lot and there wasn't much I could do for her. And I quickly figured out that her schedule was pretty set. Feeds every 3 hours. I could easily time visits from home to be there for 2 or 3 feeds a day. We were fortunate enough to only live 10 miles from the hospital. So I was seriously leaning toward going home. When your 3 old son asks you to come home, it's very hard to say no. And Jackson was asking everytime he would come visit.
Thursday, May 26 -
We visited in the morning, ate lunch in the room and discussed me going home that night with Adam, took a nap, and went back up for the 9pm feeding. Dr. Dekowski happened to be there that evening and we talked to him about her progress. It was at this point that he said it would be a matter of days, not weeks before she was released. Which was FABULOUS news. They needed to get her feeds up, which was going extremely well and seemed like it would just be a matter of time. Then they needed to see her gain weight (she was still losing because of all the fluid draining from her head). We were told this evening that we could pick her up as much and as often as we liked and that she had been cleared from the neuro docs to be tilted and held upright as she could tolerate. We were ecstatic! Because she could be handled a little less delicately, I was able to nurse her for the first time that night. Which worked out wonderfully.
I was high on love hormones for our trip home. Adam was returning to work the next morning and I knew that me staying overnight alone was not in my best interest. It was hard putting my interest ahead of Addie's but I knew she was in good hands, and I knew that ultimately doing what was best for me would be to her benefit as well, in this situation. She had already surpassed my milk production. I had been walking the bottles down to her after each pumping session but thanks to my cracker crumb concerns, I was way behind. I could just as easily transport her milk in a cooler to her once or twice a day as I could walk it to her four times a day. It wasn't easy, but we left to go home that night.
We hadn't told the boys we were coming home, so we surprised them with our arrival. Was a great feeling to be home after being in the hospital a week, albeit bitter sweet.
Monday, June 6, 2011
Addie's NICU Stay Part 1
Sunday, May 22 -
We called down to the NICU and were told Addie had not only been extubated but she was on room air only, not even a cannula! We were so thankful and grateful to God for this. We felt a huge weight lift off of us. Not that we were concerned that she had complications from the surgery. But to know that we were through the surgery, she was breathing completely on her own and they were talking about starting to try to feed her soon.... well we felt like we'd won the lottery. It was such a relief. We knew we had a long road ahead of us but we felt like we were well on our way. And that our daughter was obviously a rock star.
Adam went down to the cafeteria and had breakfast. I ordered my bagel from 'room service' and pumped again. We made our way to the NICU by 10am. And were met with this beautiful sight.
I believe we visited four times this day. After shift change that afternoon, we went back and were greeted by Ethel. Ethel was by far our favorite NICU nurse, hands down.
She introduced herself and said that the next night would be her last because she had been fired. Adam and I just stared at her with our mouths hanging open a bit I'm sure. She laughed and said she was just joking, she had quit. Her husband had gotten a job in Misery.... er I mean Missouri. (her words!) When she would make Addie mad by moving her around, she would tell her that her name was Minerva not Ethel, so she couldn't report her. LOL She was just what we needed at that time. We talked to her for hours that night.
This was also the night that the couple next to us offered to have prayer for Addie and we all stayed by our respective beds (can't have more than two visitors by a bed) and had prayer.
We were able to give Addison a bath this night which was a bit of a challenge. At one point Adam picked her up so that Ethel could change her bedding. This was when we saw the back of her head for the first time after surgery. Dr. George had warned us that her head was going to get weird, and we thought we were prepared for this after pouring over what felt like hundreds of blogs while pregnant but it's still different when it's your child and it's in front of your eyes and not a picture.
I'm guessing because of her cyst, the posterior bone fell in much more quickly than any of the other bones. This may be normal and I had just never seen a picture of another hydro babies head from the back. I don't know. But it was the most unsettling thing we had experienced at that point.
We called down to the NICU and were told Addie had not only been extubated but she was on room air only, not even a cannula! We were so thankful and grateful to God for this. We felt a huge weight lift off of us. Not that we were concerned that she had complications from the surgery. But to know that we were through the surgery, she was breathing completely on her own and they were talking about starting to try to feed her soon.... well we felt like we'd won the lottery. It was such a relief. We knew we had a long road ahead of us but we felt like we were well on our way. And that our daughter was obviously a rock star.
Adam went down to the cafeteria and had breakfast. I ordered my bagel from 'room service' and pumped again. We made our way to the NICU by 10am. And were met with this beautiful sight.
I believe we visited four times this day. After shift change that afternoon, we went back and were greeted by Ethel. Ethel was by far our favorite NICU nurse, hands down.
She introduced herself and said that the next night would be her last because she had been fired. Adam and I just stared at her with our mouths hanging open a bit I'm sure. She laughed and said she was just joking, she had quit. Her husband had gotten a job in Misery.... er I mean Missouri. (her words!) When she would make Addie mad by moving her around, she would tell her that her name was Minerva not Ethel, so she couldn't report her. LOL She was just what we needed at that time. We talked to her for hours that night.
This was also the night that the couple next to us offered to have prayer for Addie and we all stayed by our respective beds (can't have more than two visitors by a bed) and had prayer.
We were able to give Addison a bath this night which was a bit of a challenge. At one point Adam picked her up so that Ethel could change her bedding. This was when we saw the back of her head for the first time after surgery. Dr. George had warned us that her head was going to get weird, and we thought we were prepared for this after pouring over what felt like hundreds of blogs while pregnant but it's still different when it's your child and it's in front of your eyes and not a picture.
I'm guessing because of her cyst, the posterior bone fell in much more quickly than any of the other bones. This may be normal and I had just never seen a picture of another hydro babies head from the back. I don't know. But it was the most unsettling thing we had experienced at that point.
A few pictures of her first sponge bath at 3 days old!
You can tell by the look on my face that I was scared of hurting her or pushing her reset button as Adam called it. Anytime we moved her head too much, you could tell it caused her head to hurt and the pressure to shift. It was literally like pushing a reset button and waiting for her to come back around.
We went back to the room and attempted sleep again. I believe it was this night that I finally started feeling the effects of my surgery and had to ask for pain meds above just motrin and tylenol. I knew I had to be able to stand by Addie's bedside, so I took the help from the meds.
Monday, May 23 -
We found Addie wide awake and waiting for us when we arrived to the NICU this morning. It was such a wonderful sight!!
They were able to take the little ducky sticky off which was her temperature gage. Which means she was able to maintain her own temperature without the aid of the heater above. She had never needed much heat but it was nice to see her all snuggled in a blanket and with one less tether. We went back to the room for lunch and a nap. Adam was going to run back home for a while to sleep and do laundry.
We got a call from a new nurse and then from a neonatologist. Addie had been moved to a different location in bay 4 (instead of bay 3) and they were going to try to feed her at her next assessment at 3pm.
Change of plans!! We rushed back to the NICU to make her first feed and I was very thankful we were there to witness it. She took right to it and drained the 10ml that they started her on and then she passed out and slept three hours straight. Bless her heart, you know she had to have been hungry, having only had fluids through her UVC line (in her belly button).
Very first bottle attempt
Adam went home to nap about the time Mom, Melissa (my oldest sister) and the boys came up to visit. Mom and I decided we would hurry and try to make the 6pm feed. Everyone walked down with us to the NICU, me still being pushed in a wheelchair up the horrible ramp to the NICU. They had built the NICU between floors 3 and 4 so it was one heckuva ramp. Jack and Grayson were going to turn back around with Melissa and walk around and explore some while Mom and I went in for the feeding. Well, Jack got very upset when he realized he wasn't going to get to go past the doors. He started bawling and saying over and over "I want see Addie! I want see Addie!" Well I lost it. I dropped off my cell, camera, bottles of milk and wheelchair in the NICU waiting area and went back out to where the boys were and picked him up. All 42 pounds of him. And yes I was just 3 days post op but I didn't care at that point. He needed his mommie and I needed him. We stood there on the ramp outside of the NICU doors and both cried. I had thought to prepare my 8 year old about not being able to see Addie. Didn't even occur to me to warn Jack. It was heart breaking. I handed him back off to my sister and mom and I went in to watch Addie eat again.
That evening, after Adam got back from his nap, he and I went back down to NICU and watched her get her third feed of the day and I got to hold her for 45 mins!! I hadn't held her since the brief 5 min hold the day she was born. It was wonderful! Quite a different experience from the first time I held her. It definitely made leaving her behind in the NICU a little bit easier.
Sunday, June 5, 2011
Addie's Surgery Day
Saturday, May 21 -
After about 3 hours of sleep, we were awake at 4:45am because of a nurse check so we decided to head up to the NICU to see Addie before shift change. We scrubbed in and made our way to her bed. We sat with her for about an hour and took several pictures. Filled out the permission slip for surgery. We went back to the room for more pain meds and then back at 7:00am to meet with Dr. George before the surgery. He showed us the MRI from the day before and this was when we found out that Addie had a cyst behind her cerebellum. He mentioned that it was 'kind of like a Dandy Walker variant cyst'. It was never found during the ultrasounds. The cyst pushed the cerebellum forward which caused the narrowing of the aqueducts. Typical Dandy Walker malformation has four things involved: a cerebellar cyst, enlarged fourth ventricle, agenesis of the vermis (part of the brain located between the two cerebellar hemispheres), and an elevated tentorium. Of these four things, all that Geroge could see was the cyst and the elevated tentorium. Which is why he called it a variant of Dandy Walker.
After meeting with the anethesiologist, we kissed Addie one last time and went back to our room.
We decided we would be better off showering, eating breakfast and pumping milk for Addison than waiting in the NICU waiting room for an hour and half. Dr. George said he would come let us know how it went.
And he did about an hour later... he came to our room and joked about how large my laptop was. "No wonder I couldn't stop googling." he said.
He told us the surgery went well. Shortly after he left the antesiologist came and told us she was back in the NICU and we could go see her when we wanted to but she was still intubated and groggy from the medicine.
We tried to wait for her to be extubated before we went to visit but she had to stay on it longer than we originally hoped, so we returned that night to visit for about an hour.
Post op pictures:
After about 3 hours of sleep, we were awake at 4:45am because of a nurse check so we decided to head up to the NICU to see Addie before shift change. We scrubbed in and made our way to her bed. We sat with her for about an hour and took several pictures. Filled out the permission slip for surgery. We went back to the room for more pain meds and then back at 7:00am to meet with Dr. George before the surgery. He showed us the MRI from the day before and this was when we found out that Addie had a cyst behind her cerebellum. He mentioned that it was 'kind of like a Dandy Walker variant cyst'. It was never found during the ultrasounds. The cyst pushed the cerebellum forward which caused the narrowing of the aqueducts. Typical Dandy Walker malformation has four things involved: a cerebellar cyst, enlarged fourth ventricle, agenesis of the vermis (part of the brain located between the two cerebellar hemispheres), and an elevated tentorium. Of these four things, all that Geroge could see was the cyst and the elevated tentorium. Which is why he called it a variant of Dandy Walker.
After meeting with the anethesiologist, we kissed Addie one last time and went back to our room.
We decided we would be better off showering, eating breakfast and pumping milk for Addison than waiting in the NICU waiting room for an hour and half. Dr. George said he would come let us know how it went.
And he did about an hour later... he came to our room and joked about how large my laptop was. "No wonder I couldn't stop googling." he said.
He told us the surgery went well. Shortly after he left the antesiologist came and told us she was back in the NICU and we could go see her when we wanted to but she was still intubated and groggy from the medicine.
We tried to wait for her to be extubated before we went to visit but she had to stay on it longer than we originally hoped, so we returned that night to visit for about an hour.
Post op pictures:
Wednesday, June 1, 2011
Addison's Arrival
Thursday May 19 -
I went to the perinatologist for a Biophysical Profile at 1:30pm. Addie would not move for the tech. They gave her the allotted 30 mins and nothing. I didn't think anything of it because it was pretty normal for her to wait til the last minute to move. Her heart rate was great, 160s to 140s, my amniotic fluid level was down to 18 from mid 20s and she was doing a ton of practice breathing. To my surprise, she had not only turned head down (from being breech on Monday) but had turned her legs around to other side.
Dr. D was out of town on a conference to Phoenix so her partner, Dr. B was filling in. They put me on the monitors to see if she would show reactivity and the heart rate strip looked "good but not great". Dr. B was new to our case and not as familiar with Addie's stubborn streak and wasn't comfortable just letting us go home. He didn't see a point in taking a chance to just make it 5 more days. He said if I had been nearing 27 weeks, not 37 weeks he could understand it. I basically informed him that Dr. D and I had butted heads on the same general principle. Dr. B said typically 5 more days at this point of gestation wasn't going to make enough of a difference in maturity. That he couldn't say that Addie was in trouble necessarily, she wasn't 'acidiotic' but that he just sometimes gets a 'feeling' and he just didn't see putting it off for just 5 more days of baking. I told Dr. B I didn't relish the idea of stressing out over the weekend, worrying about Addie to try to make it til the next BPP appointment.
Dr. B called my OB and gave her the option of letting me go to the hospital for prolonged monitoring and then doing another bpp in 12 hrs or prolonged monitoring then delivering the next day. I asked Dr. B if my ob had said she could deliver the next day and she said she could, so that was my only concern going earlier than scheduled. I could go home and get stuff together, see the boys etc. Dr. B instructed me not to go to the hospital until I heard from my ob and that she and I could officially decide then.
Addie got her eviction notice 5 days early because a doctor we had never seen had a feeling. God is amazing and when he decides to move, he moves!
We went home and told mom and the boys. As I walked in the door, I told Grayson that I knew he had wanted Addie to have the same birthday and it looked like she'd at least be born on the same day of the month - the 20th. Collins called at 5pm and said we're delivering the next day at 8am. She said the same thing I had said, no point stressing out over the weekend waiting for the next BPP to just try to make it five more days. There really wasn't any discussion about the other option. She mentioned it and I said 'whats the point?' Collins said I could have dinner at home. I asked if I could wait and leave after Grayson's bed time and she said sure.
We got packed and I shaved my legs (most important thing! LOL) and Adam napped a bit. We headed down to St Davids after having prayer and stopping at Chick Fil A on the way. We got to l&d at 9:24pm. They got my iv started and put me on the monitor. Addie looked great. Her strips were reactive and perfect according to the nurse (Michelle). She said she looked like she was very happy in there and that her strip didn't show any signs of neurological damage which I thought was interesting. She explained that baby's that have severe brain damage don't show any reactivity i.e. decels and accels. Thought that was cool. They specifically gave me Michelle as my nurse. She was on the star flight team and apparently was 'anal' in her words. If Addie had been showing any signs of distress at all, we would have had her that night. Thankfully that was not the case and we were able to wait for morning.
Friday, May 20th -
Friday, May 20th -
I didn't sleep at all - laid awake thinking and praying while Adam slept on the bench thing. It was incredibly surreal. I had been counting down the days of my pregnancy since the day I took the test. Even more so since finding out Addie's diagnosis. To actually know that she was going to arrive within hours, to know we were going to finally find out MORE about her diagnosis. It was an indescribable feeling.
They started getting everything ready for surgery around 7am. Collins got there, having driven all the way from North Austin. Dr. Dekowski, the neonatologist we met during the NICU tour, came in to check on me and stayed past his end of shift to attend the birth. Since he technically was off the clock, a different doctor was assigned as Addie's primary. As soon as Dekowski came back on shift he took Addie back as his patient. Love him for that and for staying late to be at the delivery!
They started getting everything ready for surgery around 7am. Collins got there, having driven all the way from North Austin. Dr. Dekowski, the neonatologist we met during the NICU tour, came in to check on me and stayed past his end of shift to attend the birth. Since he technically was off the clock, a different doctor was assigned as Addie's primary. As soon as Dekowski came back on shift he took Addie back as his patient. Love him for that and for staying late to be at the delivery!
I got to the OR a little before 8. Spinal went perfectly. I was numb up to my armpits. It felt wonderful. They started and I could feel everything but none of it hurt. It was the weirdest feeling. Nothing like with Jackson. I couldn't feel ANYTHING at all with Jack.
Addie was born at 8:30am. The anesthesiologist asked Adam if he wanted to stand up and see her come out. Adam had declined with Jackson so I was shocked when Adam stood up and watched them pull her out. I was laying there thinking "Good lord, there's a 6'5 300 lb man standing over me and if he faints I'm screwed cus I can't move." lol His words as soon as she came out were "She's beautiful." They immediately took her to the warmer to be assessed. She cried kind of a gurgle cry but it was a cry.
I could see her on the warming bed. She had five docs/nurses and I had 7, plus Adam in the OR. It was a packed little room. They suctioned Addie for quite a while but her apgars were 8/8 so that was good. Jack was a 7/8. I got to see her for just a second, quick kiss on the cheek and a picture and then they took her to the NICU. Adam went with Addie.
It was cool, they would call down to the OR and give me updates on her, like her weight. She weighed 10 lbs 13ozs. So much for being 10-12 lbs 3 weeks prior!
Collins started working on the cord blood collection and my tubal. "Last chance Aimee, you sure you want your tubes tied?" I practically yelled "For God's sake please tie my tubes!" She asked me if I wanted to just tie one and then take a gamble to see how well the other worked. I'm like no, if there's four in there just tie all four of them.
When I started seeing a sparkle on the ceiling, it took me a second to figure out what it was. I realized it was a reflection from something they were using on me and I asked Collins if she was blinging my uterus. It was nice to lay there and know I was no longer pregnant, that my body was no longer Addie's life support system. It was nice to be numb, and warm and be able to joke around with my doctor. Can't tell you how much I love my ob. I knew I liked her a lot before this pregnancy, but I was amazed at how far out of her way she went for us - getting privileges at St. David's Main and driving downtown every day to check on me.
Adam got to see Addie in the NICU just long enough to see where her bed was, text me a picture and then they kicked him out while they hooked her up on all her tubes.
They moved us into a suite because all the other rooms were taken at the time so we got a mini upgrade. Two flat panels, a little sitting area, a microwave and a fridge. The only drawback was it was right beside the pharmacy drop, similar to a bank tube system and it was LOUD.
All these people were in and out, a social worker for the NICU, my nurse, lactation. The lactation consultant tried to show me how to put the pump parts together but I was way too stoned on morphine to understand anything she was saying. I finally asked her to come back the next day when I could comprehend what she were saying.
The nurse practictioner from the neurosurgeon's office came by and let us know that George had seen the MRI scans and the surgery was scheduled for 8am the next morning. I was surprised. I assumed it would happen after a day or so. But I was relieved to get it over with as soon as possible and relieve the pressure. We asked if it was confirmed as aqueductal stenosis and she said we'd have to ask Dr. George.
I had to get up and walk before I could go up to the NICU to see Addie. Adam called and checked on her and got the ok to visit her so he went twice without me, and would text me pictures. After shift change for both my nurse and NICU, I was able to be wheeled with the IV pole to the NICU to see her. Mom went with us and came back after Adam. They only allow two people at a bedside at a time so Adam and Mom had to swap out. I thought to ask about her sugar levels, as baby's with gestationally diabetic moms tend to bottom out on the low end. They had been fine, which was a relief. I had spent quite a few weeks thinking my diabetes was affecting her adversely. They estimated that her head weighed 3 of her 10lbs 13 ozs. Granted 7 lbs 13 ozs is a big baby for most people at 36 weeks, 6 days gestation but she was smaller than Jack had been at that time (he was born at 37 wks, 2 days and weighed 8lbs 11ozs).
I was allowed to hold her for about 5 mins, with all her bedding and gel pad and sheepskin and tubes. She was heavy, especially after I had been up for so many hours and hadn't managed to eat anything. But it was such a relief to hold her, even if it wasn't directly skin to skin contact. You could tell her head was under pressure. Her eyes couldn't open and she didn't tolerate being moved very much so I had to keep her as flat as possible. We took a ton of pictures and reluctantly left her there for the night with plans to return in the morning to meet with George before the surgery.
.
He sat with mom in the waiting room while they finished my surgery. Once they put me in the recovery room, mom and Adam joined me. It was then that Adam told me that her head circumference was 50.5 cm. One of the largest I had read about on a girl. They moved us into a suite because all the other rooms were taken at the time so we got a mini upgrade. Two flat panels, a little sitting area, a microwave and a fridge. The only drawback was it was right beside the pharmacy drop, similar to a bank tube system and it was LOUD.
All these people were in and out, a social worker for the NICU, my nurse, lactation. The lactation consultant tried to show me how to put the pump parts together but I was way too stoned on morphine to understand anything she was saying. I finally asked her to come back the next day when I could comprehend what she were saying.
The nurse practictioner from the neurosurgeon's office came by and let us know that George had seen the MRI scans and the surgery was scheduled for 8am the next morning. I was surprised. I assumed it would happen after a day or so. But I was relieved to get it over with as soon as possible and relieve the pressure. We asked if it was confirmed as aqueductal stenosis and she said we'd have to ask Dr. George.
I had to get up and walk before I could go up to the NICU to see Addie. Adam called and checked on her and got the ok to visit her so he went twice without me, and would text me pictures. After shift change for both my nurse and NICU, I was able to be wheeled with the IV pole to the NICU to see her. Mom went with us and came back after Adam. They only allow two people at a bedside at a time so Adam and Mom had to swap out. I thought to ask about her sugar levels, as baby's with gestationally diabetic moms tend to bottom out on the low end. They had been fine, which was a relief. I had spent quite a few weeks thinking my diabetes was affecting her adversely. They estimated that her head weighed 3 of her 10lbs 13 ozs. Granted 7 lbs 13 ozs is a big baby for most people at 36 weeks, 6 days gestation but she was smaller than Jack had been at that time (he was born at 37 wks, 2 days and weighed 8lbs 11ozs).
I was allowed to hold her for about 5 mins, with all her bedding and gel pad and sheepskin and tubes. She was heavy, especially after I had been up for so many hours and hadn't managed to eat anything. But it was such a relief to hold her, even if it wasn't directly skin to skin contact. You could tell her head was under pressure. Her eyes couldn't open and she didn't tolerate being moved very much so I had to keep her as flat as possible. We took a ton of pictures and reluctantly left her there for the night with plans to return in the morning to meet with George before the surgery.
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