I've wanted to write about this for awhile but wasn't quite sure what to say. Yes I can explain what it is and what not but I wanted to go deeper than that. There are so many people out there that have NEVER heard of a hemangioma (or strawberry) but on the flip side I have met people that know exactly what it is. I was also hesitant to touch on the subject because I didn't want it to come across as me being superficial or just worried about how my daughter looks. Thats not it by any means. She's beautiful to me no matter what. She could have 15 hemangiomas on her face and I would still love her the same. (now dont get me wrong, when I was first told about it and what it was I was worried for her looks...I didn't want her to get teased or treated any differently because of it) What I worry about is her self confidence and the possible ridicule she could one day receive from other children. You know it's funny...kids have NO censor to them. When we come across a little kid out in public the first thing they look at, and usually keep looking at is her "bump" and most even just come right out and turn to their parents and ask what it is. Or even point at it and say "thats a big bump!" Thats on example of one childs reaction that saw her over our Thanksgiving break. I wasn't there to witness it, my mom was holding her at the time. I don't mind those little kids comments at all. They don't know any better. They are just saying what they see which is a "bump" on her face. Most parents are horrified that their children would point something like that out but I just smile and say "It's fine" when they apologize over and over again for their child saying anything. I even welcome it when other adults do ask what it is. I would rather they ask and me give them an answer then they not ask and see the wheels turning in their head as they stare at it and try to figure out what it is.
We came across a guy just recently that asked if it was a cancerous tumor. He prefaced it with "I hope you don't mind me asking" which I think he thought would make it all better but really? It actually is a tumor, a noncancerous one but it is classified as a tumor. What if it was cancerous? I wonder how he would have felt then and would ever reconsider asking another mom and dad the same question if he ran into a child with one on their face again. It didn't really bother me, I just thought it was kind of odd. Anyways... Kenley actually has a total of 4 on her body. One on the back of her head, on the side of her head, one on her shoulder blade and the one on her chin. I was told that as long as there were 5 or less they would not go searching for more. Meaning, I guess, that if there are 5 or more on a childs body that can be seen then there are likely more growing inside of them, like in their liver or throat area. So thats one blessing to be thankful for. That it stinks she has one in such an obvious spot but it could be WAY worse. The two on her head are actually about the same size today as they were when we brought her home from the hospital. The one on her shoulder blade is a little bigger but I actually like that one. Its a really cute one. Too bad the cute one couldn't have been on her face.
The one on her chin started as a tiny tiny little red dot that showed up 2 weeks after she was born. I remember the day very well. We had just gotten done with Kangaroo Care and her doctor had come into the room to examine her for the day. He found the little dot on her chin and goes whats that? I told him we had just gotten done with Kangarooing and maybe she was laying on one of the buttons on my shirt or something and it pinched the skin and made a mark. He agreed that it could have been that but then the next day, when it was a little bit bigger he says to me, "No, I know what that is." He tells me its more than likely a hemangioma also called a stawberry and that it would contiune to get bigger. It would grow through the first year of her life and then slowly start to disappear. And if it never totally went away we could always have a plastic surgeon look at it and they could take care of it. At this point the ones on her head and back and hadn't even appeared yet. I had a stawberry on my rear end when I was little. I can still see the outline from where it used to be but its something that is only noticeable to me.
So it has gotten bigger, and it has gotten redder but it actually looks a lot better now then right after she came home from the hospital. At first when it was much smaller it would rub against her clothes and bleed and form these scary looking scabs. The scab would fall off and then it would happen all over again. Finally the scab healed over and it no longer bled. It now has started to clear itself up from the middle out. I can tell it has stopped growing but the clearing is very slow and gradual.
Right after her doctor told me what it was, me, the queen of google, went home and googled it. I read that it was very common and that one in five babies is born with one. And that they are very common in white, preemie girls. Makes sense. It goes through three stages. A growing stage, a resting stage and a disappearing stage. I have a feeling right now its in its resting stage. I am hoping soon though that it starts its disappearing stage.
When we had our developmental check-up in October, the nurse practicioner she saw wanted us to take her to the hemangioma specialist at UNC just to see what he said about it. She said he might look at it, say it it was it is, it will go away, leave it alone, have a nice day. Or he might want to try to help it go away a little faster. Apparently there are new studies out about certain drugs or ways to make hemangiomas go away faster. So I'm just interested in what he has to say.
Like my mom has said, the Lord is trying to teach us something here. Theres a reason she has this on her face. Who knows what it is. I have a feeling its a life lesson for me though. Beauty is only skin deep...don't judge a book by its cover...Its not what is on the outside that counts but what's on the inside. I know these lessons from being taught them when I was little but sometimes people need to be reminded. Regardless, I know people look at her differently because of it and I'm ok with that. We are a beauty infested world where everyone is judged on their looks. If you are little different, people look at your differently. It doesn't make me love her any less. I can only hope one day that we as a society can get over placing SO much importance on looks. If we all looked the same it would be a boring world. That's why God made is all different and unique, outside and in.
Monday, November 29, 2010
Wednesday, November 10, 2010
Our final weeks...
So the biggest hurdle Kenley had to jump while in the NICU was getting down this technique. Of course with term babies we never give this a second thought because they are born and right away start to eat and do just fine. In having a preemie, you have to remember that they are still developing and growing, just outside of your belly. This technique isn't usually formed in babies until around 34 weeks. So we first tried a bottle with her when she was 33 weeks....a little early but hey, some babies might get it quicker then others. Nurse Donna (one of our favs) was the nurse that first helped us to try to get Kenley used to the bottle and to see if she had it down yet. Of course, she didn't. At first I would be really nervous about bottle feeding her because as soon as her heart rate dipped her monitor would go off and its a really scary thing to look at a number that should be in the 100s and its in the 50s or 40s. For that first week of trying the bottle with her that monitor went off A LOT! When we first started I wouldn't be able to take my eyes off it. I wanted to be able to see when her heart rate was dipping and rub her back and get her to take a breath. Eventually Jim and I became so used to her that we would be able to be a step ahead of the monitor and know when she needed to take a breath and sit her up or rub her neck before the monitor even had a second thought about going off. Soon I only kept my eyes on her and became so used to her eating rhythm. Usually she would be so hungry that as soon as she wrapped her lips around the nipple she would suck suck suck suck and suck so much that she would forget to take a breath and sometimes it would happen so fast that it would set the monitor off but we eventually got to a point where the monitor would go off only a once or so at the beginning and then never again during the rest of her feeding.
She still had her feeding tube in because they would do one feeding through the tube, another feeding through the bottle. She was still getting formula for extra calories and they made it so her tube feedings were the formula and bottle feedings were milk. She did NOT like the formula. If they tried to give her formula through the bottle, her monitor would go off again and again and again. But at the same time we knew a time would come when the tube would be out and she would have to take formula from the bottle. I was not looking forward to that day. But surprisingly she actually got used to the formula and when we brought her home she had no problem drinking it.
I remember this part well. We came to see Kenley one last time on a Saturday night and we arrived to a baby with NO tube in her nose! Huge thing for us because we had not seen Kenley's face without something on it since the day she was born. Her nurse had informed us that it had fallen out and instead of trying to put it back in, she was just going to keep it out and see how she did with her feedings. By this time she was doing pretty much every feeding by mouth and didn't need the tube as much anymore anyways. So when we came in Sunday, still no tube and when I came in on that Monday morning, still no tube! So we were finally headed in the right direction. As long as she kept gaining weight and kept the tube out of her nose she would be going home soon!!!
It was time for her afternoon feeding and the nurse gave me her bottle and left us alone. Well lets just say that feeding was less than productive. For whatever reason she was not having it. She did not want to finish her bottle. At this time Kenley had a certain amount she had to eat and in a certain amount of time. As long as she did what she was supposed to the tube stayed out. Well the nurse came back in and checked on us and saw that she hadn't finised her bottle and it looked like she needed to put her tube back in. I was DEVASTATED!!!! Not only was her tube going back in but I WAS THE ONE that pretty much made it have to go back in. I stood by Kenley's head while she did it and watched. Usually Jim was the one to stay in the room whenever they drew blood or did anything to make her unhappy but he wasn't there that day so I had to stay. To watch that tube go up her nose and watch her squirm and twist made me want to die. I felt so incredibly bad for her. I cried the whole time, though I somehow kept it from the nurse and kept crying while I got her back out of her crib and settled on me for a nap. The nurse left us again and I was crying my eyes out. Jim called me on my phone and right when I picked up to talk to him my mom and dad came walking through the door. And stopped dead in their tracks. I told Jim I would call him back and told mom and dad what had happened. I had a hard time getting it out while crying but they walked in and instantly thought something was wrong with her. I started out that she was fine, but then explained about the tube. I remember saying I felt like she was never getting out of that place. We had taken three steps forward and two steps back. The rest of that week was focused on her feeds and trying to get her out of the hospital. I remember nurses stopping by our room and saying "She hasn't gone home yet?" b/c she was doing so well.
The tube came back out and I walked in Friday morning to see Donna as her nurse! Yay!!! Donna tells me its time to get the ball rolling, she is working on getting her out of here. She scheduled her hearing test and wanted to do her carseat test. I think if we had had any other nurse that day, Kenley would have been in the hospital a few days past the day she came home. She was so proactive and thats what we needed right then. She passed her carseat test with flying colors and her hearing test. Now we just waited for the news from the doc about what day she was headed home. My birthday was that Sunday and we talked to her doc that day and he told us that if we were comfortable with it, then Tuesday would be the day. We could always wait an extra day and she could come home on Wednesday...uuummm, no thanks, Tuesday is GREAT!!! That was the best birthday present I could have EVER received. The only downside was she was coming home on a monitor. Even though her doc informed us that sending her home on a monitor was little bit of overkill because the only time her heart rate dipped was at the beginning of feeds and Jim and I knew her well enough to know when she needed to take a breath and what to do. But he said he would rather be safe then sorry. She only needed to wear it while she ate and at night. That monday they showed up with the monitor and gave me a tutorial on how to use it. I was just hoping I would be able to remember it all to explain to Jim. And I did!
Yay!!! She's coming home! It is Monday, April 26th...57 days in the NICU...Coming home on Tuesday, April 27th for a grand total of 58 days in the New Hanover Regional Hospital NICU...just two days shy of being there for 2 months. The day she comes home needs its own post!!!
She still had her feeding tube in because they would do one feeding through the tube, another feeding through the bottle. She was still getting formula for extra calories and they made it so her tube feedings were the formula and bottle feedings were milk. She did NOT like the formula. If they tried to give her formula through the bottle, her monitor would go off again and again and again. But at the same time we knew a time would come when the tube would be out and she would have to take formula from the bottle. I was not looking forward to that day. But surprisingly she actually got used to the formula and when we brought her home she had no problem drinking it.
I remember this part well. We came to see Kenley one last time on a Saturday night and we arrived to a baby with NO tube in her nose! Huge thing for us because we had not seen Kenley's face without something on it since the day she was born. Her nurse had informed us that it had fallen out and instead of trying to put it back in, she was just going to keep it out and see how she did with her feedings. By this time she was doing pretty much every feeding by mouth and didn't need the tube as much anymore anyways. So when we came in Sunday, still no tube and when I came in on that Monday morning, still no tube! So we were finally headed in the right direction. As long as she kept gaining weight and kept the tube out of her nose she would be going home soon!!!
It was time for her afternoon feeding and the nurse gave me her bottle and left us alone. Well lets just say that feeding was less than productive. For whatever reason she was not having it. She did not want to finish her bottle. At this time Kenley had a certain amount she had to eat and in a certain amount of time. As long as she did what she was supposed to the tube stayed out. Well the nurse came back in and checked on us and saw that she hadn't finised her bottle and it looked like she needed to put her tube back in. I was DEVASTATED!!!! Not only was her tube going back in but I WAS THE ONE that pretty much made it have to go back in. I stood by Kenley's head while she did it and watched. Usually Jim was the one to stay in the room whenever they drew blood or did anything to make her unhappy but he wasn't there that day so I had to stay. To watch that tube go up her nose and watch her squirm and twist made me want to die. I felt so incredibly bad for her. I cried the whole time, though I somehow kept it from the nurse and kept crying while I got her back out of her crib and settled on me for a nap. The nurse left us again and I was crying my eyes out. Jim called me on my phone and right when I picked up to talk to him my mom and dad came walking through the door. And stopped dead in their tracks. I told Jim I would call him back and told mom and dad what had happened. I had a hard time getting it out while crying but they walked in and instantly thought something was wrong with her. I started out that she was fine, but then explained about the tube. I remember saying I felt like she was never getting out of that place. We had taken three steps forward and two steps back. The rest of that week was focused on her feeds and trying to get her out of the hospital. I remember nurses stopping by our room and saying "She hasn't gone home yet?" b/c she was doing so well.
The tube came back out and I walked in Friday morning to see Donna as her nurse! Yay!!! Donna tells me its time to get the ball rolling, she is working on getting her out of here. She scheduled her hearing test and wanted to do her carseat test. I think if we had had any other nurse that day, Kenley would have been in the hospital a few days past the day she came home. She was so proactive and thats what we needed right then. She passed her carseat test with flying colors and her hearing test. Now we just waited for the news from the doc about what day she was headed home. My birthday was that Sunday and we talked to her doc that day and he told us that if we were comfortable with it, then Tuesday would be the day. We could always wait an extra day and she could come home on Wednesday...uuummm, no thanks, Tuesday is GREAT!!! That was the best birthday present I could have EVER received. The only downside was she was coming home on a monitor. Even though her doc informed us that sending her home on a monitor was little bit of overkill because the only time her heart rate dipped was at the beginning of feeds and Jim and I knew her well enough to know when she needed to take a breath and what to do. But he said he would rather be safe then sorry. She only needed to wear it while she ate and at night. That monday they showed up with the monitor and gave me a tutorial on how to use it. I was just hoping I would be able to remember it all to explain to Jim. And I did!
Yay!!! She's coming home! It is Monday, April 26th...57 days in the NICU...Coming home on Tuesday, April 27th for a grand total of 58 days in the New Hanover Regional Hospital NICU...just two days shy of being there for 2 months. The day she comes home needs its own post!!!
Monday, November 1, 2010
Back on track
OK, back to the story...
So Kenley had her picc line done on Monday March 7th and that was a very traumatizing day for us. Every day after that I would be on pins and needles whenever I would walk into her room because I was never sure as to what I would be walking into. I feel like through this whole process I aged about 10 years. It was a tough ordeal to go through, obviously.
So here began my daily routine of getting up in the morning, getting ready, going to the hospital and spending the morning and afternoon with Kenley. Then I would drive home to meet Jim and we would go back to the hospital for the evening. Depending on how the day was for Kenley we would either leave right before shift change, at 6:45 and go home to get some house work done for the day or we would stay through shift change and not leave until 7:45 or 8. It made for some very long days, especially for Jim but we did that for 2 months. Sometimes I would just stay at the hospital and Jim would come home from work, let the dogs out and then just meet me at the hospital. That only happened a few times. It was harder for us when we did it that way because that meant I was with her from about 11 in the morning until we left that evening and being in a room with no window for about 8 hours is rough on you.
They started finally giving Kenley milk (if I remember correctly) soon after her picc line. About a week after that they started giving her fortified milk which they give to all the babies. My milk did not have enough of what she needed being so small so they fortify it which helps her gain weight faster and helps strengthen her bones. Even before I had been discharged from the hospital we had a lady come talk to us about a study. Kenley qualified for the study based on I believe it was her weight at birth. For years now they have been using a certain type of fortifier and they have recently been studing a new kind. (You think I would remember this but for some reason I don't. Either the old fortifier was powder or the new fortifier was...something to that extent). Well anyways, it was up to jim and I if we wanted her to participate in the study. We wouldn't know which kind she was on, only the nurses that mixed her milk would know and no matter what we decided, she was going to get fortified milk so it really didn't matter what we decided. They would come in each week and measure her length and head and chart her growth. Jim and I decided to do the study. Wouldn't hurt so why not. The lady that talked with us about this also gave me a hospital grade pump to take home and use. I didn't realize this at the time but a preemies suck is different then a full term babies suck so I needed a pump that was ultra strong. Not the pumps they sell in the stores though I did end up getting one of those anyways because I would need it after I brought her home. So I had a pump at home, one in Kenleys room and besides spending time with Kenley, I feel like my life revolved around pumping. Every three hours. I was neurotic about it. I got freaked out because I had so many people say "make sure you pump EVERY three hours! If you don't your milk will dry up". Of course this freaked me out so my first night home I was getting ready to set my alarm to get up in the middle of the night to pump until Jim talked some sense into me. I needed rest. My milk was not going to dry up if I went 6 hours without pumping. So I would pump right before I went to bed and get up when Jim would to pump in the morning. And I guess some moms of preemies have trouble producing milk, with all the stree and what not I see why, but not me, I was like a cow when it came to giving milk. I had even stocked up so much milk at the hospital that they ended up sending some back home with me because I was overflowing in my spot in the fridge.
So after the started fortifing her milk, her doc at the time decided to up her calories. We were warned that some babies don't take well to the higher calorie so if she showed any sign of not taking it well, they would take her back down. Well soon after starting, her belly suddenly got big and up until they took out her feeding tube, they were always measuring and re-measuring her belly. I believe she just has a big belly! But anyways, there is a life threating thing that can happen in preemies bellies and they keep out an eye for a bloated belly because that can be an indication. So as soon as that happened they stopped her feedings and took a couple days of xrays. In the end, her belly settled back down and there was nothing wrong, thank the Lord. That could have gone in a completly different direction. So she went about 3 days without getting milk, but she was still getting nutrients through her IV. The crappy thing about stopping her feedings was that she now had to start all the way over again. Back from square one. 2 mls of milk. About half a tea spoon. Not much right. They have to start small and work up. You can't be giving a baby that small tons of milk right of the bat. She is still supposed to be growing and forming in me, her intestines are still developing. Bless her heart. I go back to those days when she was a little helpless thing and my heart breaks for her.
So we had passed another hurddle. Now every day it was just making sure we kept an eye on her belly and as long as she was gaining weight, we were headed in the right direction.
She had an echo of her heart done a couple weeks after being born because they heard a murmur but thankfully whatever hole was there has now closed up. She had an ultrasound done on her head right after being born to see if there were any bleeds and again, thank the Lord, there were not. And the biggest thing I was worried about, a blood transfusion that I just knew was going to have to happen, never did. For her being born so early and so small she made it out of the hospital without having ANY of the issues Dr. Javier had talked to us about. Her nurses would always talk about how fiesty she was. She did NOT like to be fussed with the first few weeks and she would let you know if you messed with her and it ticked her off. I knew I had a strong willed girl on my hands and though this was great to get her through her hospital stay, it made me think and worry about how I am going to deal with this when she gets older. I can already tell she is going to have a temper. When she is mad she let's you know loud and clear.
I guess this is really all to say about her journey...no its not. (Got more to talk about) The rest of her time there she just pretty much occupied a room. She focused on eating and getting bigger. We still did kangaroo and when she got a bit bigger we started holding her in a cradle position. Her picc line came out after 2 and half weeks and she had her nasal canula for 12 days. She did have her feeding tube for awhile. For some reason she had a really hard time getting the suck, swallow, breath technique down. And now that I think about it, that was our last issue with her there. So there is more to talk about. Learning how to eat from a bottle for her was tough stuff. My next post will be about that and her final weeks in the NICU.
So Kenley had her picc line done on Monday March 7th and that was a very traumatizing day for us. Every day after that I would be on pins and needles whenever I would walk into her room because I was never sure as to what I would be walking into. I feel like through this whole process I aged about 10 years. It was a tough ordeal to go through, obviously.
So here began my daily routine of getting up in the morning, getting ready, going to the hospital and spending the morning and afternoon with Kenley. Then I would drive home to meet Jim and we would go back to the hospital for the evening. Depending on how the day was for Kenley we would either leave right before shift change, at 6:45 and go home to get some house work done for the day or we would stay through shift change and not leave until 7:45 or 8. It made for some very long days, especially for Jim but we did that for 2 months. Sometimes I would just stay at the hospital and Jim would come home from work, let the dogs out and then just meet me at the hospital. That only happened a few times. It was harder for us when we did it that way because that meant I was with her from about 11 in the morning until we left that evening and being in a room with no window for about 8 hours is rough on you.
They started finally giving Kenley milk (if I remember correctly) soon after her picc line. About a week after that they started giving her fortified milk which they give to all the babies. My milk did not have enough of what she needed being so small so they fortify it which helps her gain weight faster and helps strengthen her bones. Even before I had been discharged from the hospital we had a lady come talk to us about a study. Kenley qualified for the study based on I believe it was her weight at birth. For years now they have been using a certain type of fortifier and they have recently been studing a new kind. (You think I would remember this but for some reason I don't. Either the old fortifier was powder or the new fortifier was...something to that extent). Well anyways, it was up to jim and I if we wanted her to participate in the study. We wouldn't know which kind she was on, only the nurses that mixed her milk would know and no matter what we decided, she was going to get fortified milk so it really didn't matter what we decided. They would come in each week and measure her length and head and chart her growth. Jim and I decided to do the study. Wouldn't hurt so why not. The lady that talked with us about this also gave me a hospital grade pump to take home and use. I didn't realize this at the time but a preemies suck is different then a full term babies suck so I needed a pump that was ultra strong. Not the pumps they sell in the stores though I did end up getting one of those anyways because I would need it after I brought her home. So I had a pump at home, one in Kenleys room and besides spending time with Kenley, I feel like my life revolved around pumping. Every three hours. I was neurotic about it. I got freaked out because I had so many people say "make sure you pump EVERY three hours! If you don't your milk will dry up". Of course this freaked me out so my first night home I was getting ready to set my alarm to get up in the middle of the night to pump until Jim talked some sense into me. I needed rest. My milk was not going to dry up if I went 6 hours without pumping. So I would pump right before I went to bed and get up when Jim would to pump in the morning. And I guess some moms of preemies have trouble producing milk, with all the stree and what not I see why, but not me, I was like a cow when it came to giving milk. I had even stocked up so much milk at the hospital that they ended up sending some back home with me because I was overflowing in my spot in the fridge.
So after the started fortifing her milk, her doc at the time decided to up her calories. We were warned that some babies don't take well to the higher calorie so if she showed any sign of not taking it well, they would take her back down. Well soon after starting, her belly suddenly got big and up until they took out her feeding tube, they were always measuring and re-measuring her belly. I believe she just has a big belly! But anyways, there is a life threating thing that can happen in preemies bellies and they keep out an eye for a bloated belly because that can be an indication. So as soon as that happened they stopped her feedings and took a couple days of xrays. In the end, her belly settled back down and there was nothing wrong, thank the Lord. That could have gone in a completly different direction. So she went about 3 days without getting milk, but she was still getting nutrients through her IV. The crappy thing about stopping her feedings was that she now had to start all the way over again. Back from square one. 2 mls of milk. About half a tea spoon. Not much right. They have to start small and work up. You can't be giving a baby that small tons of milk right of the bat. She is still supposed to be growing and forming in me, her intestines are still developing. Bless her heart. I go back to those days when she was a little helpless thing and my heart breaks for her.
So we had passed another hurddle. Now every day it was just making sure we kept an eye on her belly and as long as she was gaining weight, we were headed in the right direction.
She had an echo of her heart done a couple weeks after being born because they heard a murmur but thankfully whatever hole was there has now closed up. She had an ultrasound done on her head right after being born to see if there were any bleeds and again, thank the Lord, there were not. And the biggest thing I was worried about, a blood transfusion that I just knew was going to have to happen, never did. For her being born so early and so small she made it out of the hospital without having ANY of the issues Dr. Javier had talked to us about. Her nurses would always talk about how fiesty she was. She did NOT like to be fussed with the first few weeks and she would let you know if you messed with her and it ticked her off. I knew I had a strong willed girl on my hands and though this was great to get her through her hospital stay, it made me think and worry about how I am going to deal with this when she gets older. I can already tell she is going to have a temper. When she is mad she let's you know loud and clear.
I guess this is really all to say about her journey...no its not. (Got more to talk about) The rest of her time there she just pretty much occupied a room. She focused on eating and getting bigger. We still did kangaroo and when she got a bit bigger we started holding her in a cradle position. Her picc line came out after 2 and half weeks and she had her nasal canula for 12 days. She did have her feeding tube for awhile. For some reason she had a really hard time getting the suck, swallow, breath technique down. And now that I think about it, that was our last issue with her there. So there is more to talk about. Learning how to eat from a bottle for her was tough stuff. My next post will be about that and her final weeks in the NICU.
Thursday, October 21, 2010
My Issues
Again, I'm going off track and I promise to return but as these new things take place I feel compelled to write about them.
I am having an MRI done tomorrow and needless to say I am a bit nervous. I am a claustrophobic person. I do not like small spaces. I do not even like being in elevators for an extended amount of time so I am worried I will not make it through this. I was given the option to take a valium before the procedure and I think I am going to. I am not a fan of taking medicine period because my body responds weird to it sometimes but if I ever want to figure out what is exactly wrong with me, I need to have this done.
I had mentioned in an earlier blog that when I was having my c-section, Dr. Pierson asked me if anyone had ever told me that I had a bicornuate uterus. A normal uterus is shaped like an upside down triangle...my uterus is believed to be shaped like a heart. Some doctors refer to it as a heart, most refer to it as having two horns. When it is shaped this way, a wall has been created in the middle and depending on what side the egg implants on, that is all the room the baby gets to grow. So I finally get an answer as to why my water broke and Kenley came early. She just didn't have anymore room to grow. She only had one side of my uterus and as soon as that got as big as it could, she decided to make her exit.
I had my yearly with Dr. Pierson in August and she told me that she wanted to further investigate my issue to make sure that's really what it was and if there was anything they could do to help the issue for baby #2...that's a whole other story!!!
So I went and had an ultrasound of my kidneys and bladder done. Apparently when you are a baby and your uterus is forming, that along with your kidneys and bladder all form at the same time. So if something was wrong with my uterus, chances were there was something wrong with my kidneys as well. I read stories on the internet about women having bicornuate uteruses and when they checked their kidneys, they discovered they had only one! Well luckily both of my kidneys are there and everything looked fine with that. That same day I also had an internal ultrasound done to get a better picture of my uterus and ovaries. Well that didn't give my doctor the images she was looking for and also presented a possible different issue I had other that a bicornuate uterus. First there was a mass on my left ovary and she wanted to do a biopsy of my uterus just to make sure there wasn't anything funky going on in there. Secondly, she believed I could have a bicornuate uterus but also I could have something called a uterine septum, which is where a bunch of tissue has formed in the middle of the uterus and has created a wall. Making it seem like a bicornuate uterus but it might not be.
So I had the biopsy done, by the way which was no fun, and thankfully everything came back normal. Next step, MRI to get an even better image of what is going on in my body.
So here we are. And all of this isn't being done just to figure things out for baby #2 but its nice to know what is going on inside of you in case you ever need a certain surgery. It is just nice to have all this stuff in my records. As of today there will never be a baby #2. Jim was and is traumatized by Kenley being born so early and he is adament about not having anymore. Myself, I go back and forth about the situation. Some days I want another one because I don't want Kenley to be an only child and other days I think back to the road we have been down and I can not imagine myself doing it again. Plus the days K is hard to take care of or the nights she doesn't sleep that well I think, I don't want to do this again! I love my sleep too much! :). Time will tell. But hopefully after tomorrow I will know exactly what is up with my uterus and where we go from there.
I am having an MRI done tomorrow and needless to say I am a bit nervous. I am a claustrophobic person. I do not like small spaces. I do not even like being in elevators for an extended amount of time so I am worried I will not make it through this. I was given the option to take a valium before the procedure and I think I am going to. I am not a fan of taking medicine period because my body responds weird to it sometimes but if I ever want to figure out what is exactly wrong with me, I need to have this done.
I had mentioned in an earlier blog that when I was having my c-section, Dr. Pierson asked me if anyone had ever told me that I had a bicornuate uterus. A normal uterus is shaped like an upside down triangle...my uterus is believed to be shaped like a heart. Some doctors refer to it as a heart, most refer to it as having two horns. When it is shaped this way, a wall has been created in the middle and depending on what side the egg implants on, that is all the room the baby gets to grow. So I finally get an answer as to why my water broke and Kenley came early. She just didn't have anymore room to grow. She only had one side of my uterus and as soon as that got as big as it could, she decided to make her exit.
I had my yearly with Dr. Pierson in August and she told me that she wanted to further investigate my issue to make sure that's really what it was and if there was anything they could do to help the issue for baby #2...that's a whole other story!!!
So I went and had an ultrasound of my kidneys and bladder done. Apparently when you are a baby and your uterus is forming, that along with your kidneys and bladder all form at the same time. So if something was wrong with my uterus, chances were there was something wrong with my kidneys as well. I read stories on the internet about women having bicornuate uteruses and when they checked their kidneys, they discovered they had only one! Well luckily both of my kidneys are there and everything looked fine with that. That same day I also had an internal ultrasound done to get a better picture of my uterus and ovaries. Well that didn't give my doctor the images she was looking for and also presented a possible different issue I had other that a bicornuate uterus. First there was a mass on my left ovary and she wanted to do a biopsy of my uterus just to make sure there wasn't anything funky going on in there. Secondly, she believed I could have a bicornuate uterus but also I could have something called a uterine septum, which is where a bunch of tissue has formed in the middle of the uterus and has created a wall. Making it seem like a bicornuate uterus but it might not be.
So I had the biopsy done, by the way which was no fun, and thankfully everything came back normal. Next step, MRI to get an even better image of what is going on in my body.
So here we are. And all of this isn't being done just to figure things out for baby #2 but its nice to know what is going on inside of you in case you ever need a certain surgery. It is just nice to have all this stuff in my records. As of today there will never be a baby #2. Jim was and is traumatized by Kenley being born so early and he is adament about not having anymore. Myself, I go back and forth about the situation. Some days I want another one because I don't want Kenley to be an only child and other days I think back to the road we have been down and I can not imagine myself doing it again. Plus the days K is hard to take care of or the nights she doesn't sleep that well I think, I don't want to do this again! I love my sleep too much! :). Time will tell. But hopefully after tomorrow I will know exactly what is up with my uterus and where we go from there.
Monday, October 11, 2010
Developmental Clinic
I decided to take a quick break from writing about Kenley's NICU experience and touch on the developmental clinic which is happening tomorrow. With my next post I will get back into our story.
So when Kenley got discharged from the hospital, among other appointments, one for the developmental clinic was made. All babies born before (either 32 or 33 weeks...I can't remember which) are scheduled to come back and get assessed developmentally. Babies born that early are more likely to have development issues so they want to check her and see how she is doing. I am guessing that if they feel she needs to work with a therapist on a specific area, they will see that and make sure she gets all the extra help she needs.
When I knew she was going to come early the first thing I thought about and became concerned about was how being born early would affect her developmentally. Its tough enough to be a kid these days without having extra issues. The last thing I want is for her to have any kind of problems or issues. And I'm sure I'm not the only parent that thinks this...whether they have a preemie or not.
Personally, I think she is doing great. Yes I know she is 7 months old but developmentally she is only 5 months (almost...she'll be 5 months on the 17th)
What it boils down to is my worry and fears about her not developing properly. I mean technically it is my fault that she came so early so if she were to have problems, its hard not to feel guilty about it. I know I shouldn't feel bad but I can't help it. I hold the guilt that she was born at 29 weeks, that she was in the hospital for 2 months, that she was poked and proded for so long, that she was only 2 lb 7 oz and 14 inches long. I think I will hold that guilt with me til the day I die. But at the same time I have to recognize and appreciate where she's at now. I can't dwell on how I feel. What I need to dwell on is that even though I feel guilty, the reality is is that she survived. She is healthy, she is growing and thriving every day and what is in the past is in the past. I know she was born early for a reason. I know Jim and I have gone through the experiences we have gone through with her for a reason. I know some of those reasons today, not all of them though and I probably won't know all of them this side of heaven.
It doesn't matter if we see the doctor tomorrow and he tells us she'll need to see every therapist alive til the day she dies. What does matter is that she is a happy healthy little girl and Jim and I are having a blast being parents to her (most of the time, we do get stressed every now and then...what mommy or daddy doesn't sometimes). We have been given this beautiful gift and we never know what tomorrow will bring so live each day to the fullest...I know this all too well obviously. Nothing can change the love we have in our hearts for this girl...nothing.
So when Kenley got discharged from the hospital, among other appointments, one for the developmental clinic was made. All babies born before (either 32 or 33 weeks...I can't remember which) are scheduled to come back and get assessed developmentally. Babies born that early are more likely to have development issues so they want to check her and see how she is doing. I am guessing that if they feel she needs to work with a therapist on a specific area, they will see that and make sure she gets all the extra help she needs.
When I knew she was going to come early the first thing I thought about and became concerned about was how being born early would affect her developmentally. Its tough enough to be a kid these days without having extra issues. The last thing I want is for her to have any kind of problems or issues. And I'm sure I'm not the only parent that thinks this...whether they have a preemie or not.
Personally, I think she is doing great. Yes I know she is 7 months old but developmentally she is only 5 months (almost...she'll be 5 months on the 17th)
What it boils down to is my worry and fears about her not developing properly. I mean technically it is my fault that she came so early so if she were to have problems, its hard not to feel guilty about it. I know I shouldn't feel bad but I can't help it. I hold the guilt that she was born at 29 weeks, that she was in the hospital for 2 months, that she was poked and proded for so long, that she was only 2 lb 7 oz and 14 inches long. I think I will hold that guilt with me til the day I die. But at the same time I have to recognize and appreciate where she's at now. I can't dwell on how I feel. What I need to dwell on is that even though I feel guilty, the reality is is that she survived. She is healthy, she is growing and thriving every day and what is in the past is in the past. I know she was born early for a reason. I know Jim and I have gone through the experiences we have gone through with her for a reason. I know some of those reasons today, not all of them though and I probably won't know all of them this side of heaven.
It doesn't matter if we see the doctor tomorrow and he tells us she'll need to see every therapist alive til the day she dies. What does matter is that she is a happy healthy little girl and Jim and I are having a blast being parents to her (most of the time, we do get stressed every now and then...what mommy or daddy doesn't sometimes). We have been given this beautiful gift and we never know what tomorrow will bring so live each day to the fullest...I know this all too well obviously. Nothing can change the love we have in our hearts for this girl...nothing.
Thursday, October 7, 2010
58 days in the NICU...Part 1
I forgot to mention a couple things in some of my older posts. I had wanted to mention that from my spinal, I not only endured the pain of being stuck with a needle numerous times but I also developed a huge bruise, right on my spine, in the spot that I got pricked. The first few showers I took I needed Jim to help dry me off because I couldn't bend over to do my legs or my back. The first time he was drying me off he pushed on my back and I go, "hey, that hurts," when he pushed on my spine. So I go and look in the mirror and see a huge dark bruise on my spine. At first I thought all c-section women got a bruise, but after talking to some friends that have had c-sections, I realized I was a special case. Lovely....
Then I forgot to mention, I don't know how, but Kenley swelled up like a stuffed sausage after she was pulled out. Her lips got all swollen, her eyes were big and puffy and she had bruises all over her body. She had a huge hand mark on her torso where Dr. Pierson had grabbed her and tried to pull her out. I have a pic of her right after she was born where she is all red and swollen...I will post it soon. It's hard for me to look at now.
Jim thankfully took that entire week off of work...not that he had much choice. Well actually he did because if you can believe it, the day after Kenley was born, his boss called him and was asking when he was going to be returning. I remember him saying something to the effect to Jim that he returned to work the next day after his children were born...well that may have been the case but I do not think his children were born 11 weeks early and they did not weigh 2 lbs. So while I was in the hospital trying to recoup, I had the added stress of wondering if Jim was going to lose his job because he had taken off so many days and his boss was not happy about him taking off more. Here I am stressed as it is giving birth to a preemie, having the added trauma to my body that I am trying to heal from, and I'm sitting in bed crying because Jim is being asked when he is going to return to work. The head nurse came in that day to just check on me and I remember boohooing to her about the situation and I felt bad because she just came to see how I was. She didn't intend to sit there and have me vent to her about my husbands work situation. So Jim had that week off and would be returning to work that following monday.
So we got up Friday morning and got ready to head to the hospital. This would be day 4 of her being in the hospital. I remember being told that babies born that early would be expected to stay anywhere between 8 and 10 weeks. At that time, I knew that was a long time to be in the hospital but I was so focused on my day to day routine with visting Kenley it didn't really phase me. I got to do Kangaroo care with her when she was 2 days old. She had been taken off the c-pap and that was my first chance to hold her. Jim got to do Kangaroo with her also but he waited a few days and let me have the time to snuggle with her at first. I think the first time he did it was that Friday. At this point she was stable. She had her nasal canula and of course her IV and she had to do a couple stints under the light for jaundice but other than that she was in great shape. Her nurse practitioner had told us, I think it was that wednesday, that there was a possiblity they would have to do something called a picc line. Which was just a permanent IV. They were having a hard time finding veins, I wonder why, and she would probably be needing IV fluids for awhile so a picc line wasn't a bad idea. She told us that it went in under her armpit and connected to a major vein that was in her chest and she would get her fluids that way. It was a good thing because it was permanent until it needed to come out. Meaning she didn't keep having to get pricked every couple days with a needle and every time she was pricked, there was always a chance of an infection happening. The only bad thing was if they couldn't get the vein, then she would have to go into surgery and get the IV that way. But she told us that if they did the picc line we would get plenty of notice, they would either call us or talk to us because we had to sign something for her to get it done.
That Friday was uneventful, as was that Saturday. We did our usual routine of calling in the morning, going to visit til lunch time. Coming back in the afternoon and spending the rest of the day with her. Going home to take care of the dogs and calling at night to check on her before we went to bed. We got up that Sunday morning, called to see how she was. She was great, nothing new to report so we got showered and dressed and headed to the hospital. As soon as we turned into her room I knew somthing was wrong. All the lights were on... that is very rare because they try to keep the rooms not dark, but with only a little light to give the babies as much rest as possible. I look over and the top of her isolet is raised up and she is sprawled out on her back with her left arm taped down to the bed. All the comfy things that are usually in with her are gone and I see scrubs stuffed into her trashcan at the end of her bed. Right then the nurse practitioner comes walking in and says "Mom and dad, an update" And I'm thinking, what in the world. We just checked on her a couple hours ago and she was fine. She told us that when Kenley's nurse looked at her IV, which was in her foot, her foot was all swollen so she needed to change it. Well in trying to find a new vein that wasn't bruised or had been used already, she couldn't find one. Thats when she called in the practitioner and she acted right then and there. She told us that she saw a vein in her arm to do the picc line and if she didn't do it then and there, she wouldn't have another chance to do it. So they did the picc line and didn't have time to call us. So needless to say we walked in and got the surprise of our lives. So they then ask me to sign the form that needed my signature, of course if they had called I would have said yes to it anyhow. Luckily the np had been able to get the vein and it worked because like I said, if they had tried and couldn't do it she would have had to go into surgery to have it done. That day very fast became a crappy day for us. She had been doing great up until then. She hadn't been having any problems, she was going to start on milk soon, and then bam...this happens. As we were told so many times, never trust a preemie. They can do great one day and the next day do a complete 180 on you and have a horrible day. Her nurse that day had to leave so Maria, one of our most favorite nurses (and we had a lot of favs) took over for her that day. Maria was so gentle and so sweet. She got her isolet all fixed back up and got her nice and comfy. I remember some other nurses coming into her room and needing to rewrap Kenley's picc line and Maria telling them to come back later. Kenley had had enough stress for right now, she needed some time to rest before they started messing with her again. Maria was Kenley's nurse a lot right at that beginning and sadly she didn't get the chance to be her nurse again after that. But we saw her around the NICU and we know she came back to check on her on days that she worked. Maria had told us she felt so bad for us that day and what we had to go through and what had to be done to Kenley, that on the next day she worked, which was that Monday, she wasn't assigned Kenley but she came back in to check on her to make sure she was doing alright. I tell you what, Jim and I met some great people while she was there. Sweet, caring, loving individuals that seemed to love Kenley just as much as we did. I will be forever grateful for those wonderful women, and yes man, that took such great care of her. I don't think she would be here today if it wasn't for them. Yes the doctors and the nps took care of her and diagnosed her and what not but it was the nurses that spent the most time with her and really got to know her. They are truly angels in disguise. I will do a post just on them later on.
The picc line happened on Day 6, it was March 7th. 6 days down, only 52 more days to go!
Then I forgot to mention, I don't know how, but Kenley swelled up like a stuffed sausage after she was pulled out. Her lips got all swollen, her eyes were big and puffy and she had bruises all over her body. She had a huge hand mark on her torso where Dr. Pierson had grabbed her and tried to pull her out. I have a pic of her right after she was born where she is all red and swollen...I will post it soon. It's hard for me to look at now.
Jim thankfully took that entire week off of work...not that he had much choice. Well actually he did because if you can believe it, the day after Kenley was born, his boss called him and was asking when he was going to be returning. I remember him saying something to the effect to Jim that he returned to work the next day after his children were born...well that may have been the case but I do not think his children were born 11 weeks early and they did not weigh 2 lbs. So while I was in the hospital trying to recoup, I had the added stress of wondering if Jim was going to lose his job because he had taken off so many days and his boss was not happy about him taking off more. Here I am stressed as it is giving birth to a preemie, having the added trauma to my body that I am trying to heal from, and I'm sitting in bed crying because Jim is being asked when he is going to return to work. The head nurse came in that day to just check on me and I remember boohooing to her about the situation and I felt bad because she just came to see how I was. She didn't intend to sit there and have me vent to her about my husbands work situation. So Jim had that week off and would be returning to work that following monday.
So we got up Friday morning and got ready to head to the hospital. This would be day 4 of her being in the hospital. I remember being told that babies born that early would be expected to stay anywhere between 8 and 10 weeks. At that time, I knew that was a long time to be in the hospital but I was so focused on my day to day routine with visting Kenley it didn't really phase me. I got to do Kangaroo care with her when she was 2 days old. She had been taken off the c-pap and that was my first chance to hold her. Jim got to do Kangaroo with her also but he waited a few days and let me have the time to snuggle with her at first. I think the first time he did it was that Friday. At this point she was stable. She had her nasal canula and of course her IV and she had to do a couple stints under the light for jaundice but other than that she was in great shape. Her nurse practitioner had told us, I think it was that wednesday, that there was a possiblity they would have to do something called a picc line. Which was just a permanent IV. They were having a hard time finding veins, I wonder why, and she would probably be needing IV fluids for awhile so a picc line wasn't a bad idea. She told us that it went in under her armpit and connected to a major vein that was in her chest and she would get her fluids that way. It was a good thing because it was permanent until it needed to come out. Meaning she didn't keep having to get pricked every couple days with a needle and every time she was pricked, there was always a chance of an infection happening. The only bad thing was if they couldn't get the vein, then she would have to go into surgery and get the IV that way. But she told us that if they did the picc line we would get plenty of notice, they would either call us or talk to us because we had to sign something for her to get it done.
That Friday was uneventful, as was that Saturday. We did our usual routine of calling in the morning, going to visit til lunch time. Coming back in the afternoon and spending the rest of the day with her. Going home to take care of the dogs and calling at night to check on her before we went to bed. We got up that Sunday morning, called to see how she was. She was great, nothing new to report so we got showered and dressed and headed to the hospital. As soon as we turned into her room I knew somthing was wrong. All the lights were on... that is very rare because they try to keep the rooms not dark, but with only a little light to give the babies as much rest as possible. I look over and the top of her isolet is raised up and she is sprawled out on her back with her left arm taped down to the bed. All the comfy things that are usually in with her are gone and I see scrubs stuffed into her trashcan at the end of her bed. Right then the nurse practitioner comes walking in and says "Mom and dad, an update" And I'm thinking, what in the world. We just checked on her a couple hours ago and she was fine. She told us that when Kenley's nurse looked at her IV, which was in her foot, her foot was all swollen so she needed to change it. Well in trying to find a new vein that wasn't bruised or had been used already, she couldn't find one. Thats when she called in the practitioner and she acted right then and there. She told us that she saw a vein in her arm to do the picc line and if she didn't do it then and there, she wouldn't have another chance to do it. So they did the picc line and didn't have time to call us. So needless to say we walked in and got the surprise of our lives. So they then ask me to sign the form that needed my signature, of course if they had called I would have said yes to it anyhow. Luckily the np had been able to get the vein and it worked because like I said, if they had tried and couldn't do it she would have had to go into surgery to have it done. That day very fast became a crappy day for us. She had been doing great up until then. She hadn't been having any problems, she was going to start on milk soon, and then bam...this happens. As we were told so many times, never trust a preemie. They can do great one day and the next day do a complete 180 on you and have a horrible day. Her nurse that day had to leave so Maria, one of our most favorite nurses (and we had a lot of favs) took over for her that day. Maria was so gentle and so sweet. She got her isolet all fixed back up and got her nice and comfy. I remember some other nurses coming into her room and needing to rewrap Kenley's picc line and Maria telling them to come back later. Kenley had had enough stress for right now, she needed some time to rest before they started messing with her again. Maria was Kenley's nurse a lot right at that beginning and sadly she didn't get the chance to be her nurse again after that. But we saw her around the NICU and we know she came back to check on her on days that she worked. Maria had told us she felt so bad for us that day and what we had to go through and what had to be done to Kenley, that on the next day she worked, which was that Monday, she wasn't assigned Kenley but she came back in to check on her to make sure she was doing alright. I tell you what, Jim and I met some great people while she was there. Sweet, caring, loving individuals that seemed to love Kenley just as much as we did. I will be forever grateful for those wonderful women, and yes man, that took such great care of her. I don't think she would be here today if it wasn't for them. Yes the doctors and the nps took care of her and diagnosed her and what not but it was the nurses that spent the most time with her and really got to know her. They are truly angels in disguise. I will do a post just on them later on.
The picc line happened on Day 6, it was March 7th. 6 days down, only 52 more days to go!
Saturday, October 2, 2010
In the beginning
I should be sleeping right now because Kenley has this horrible habit of waking up anywhere between now and about 1 to be soothed but since I haven't written in awhile I feel compelled to do this. So I will write and if she wakes up then oh well...I will just be a little bit more tired tomorrow.
Kenley Schuyler was born weighing 2 lbs. 7oz. and she was 14 inches long. Jim told me that they re-weighed her a few times when they got her down to her room because they had a hard time accepting she weighed that much. When we had our ultrasound at the hospital on that previous Thursday, they had told us she was exactly 2 lbs. So the fact that she had gained 7 ozs. in just 4 days was nuts! But thats what she weighed. They had told me that I could leave on Thursday if I wanted to but if I wanted to stay until Friday I could also. All due to my rough delivery.
When Dr. Pierson went in to get Kenley, she got her feet and torso out but not quick enough. My uterus clamped around Kenley's head and that is where the tugging and pulling came from. She had tried to get Kenley out without having to make anymore cuts into me but it just didn't work. She had to make a T like incision into my uterus to get Kenley's head out so therefore I would have a longer recovery time then most c-section women. I imagine that is why to this day I am still sore in my abdomen. Of course not as nearly as sore as I have been but I am still sensative down there. When Kenley lies on her back and pushes with her feet right onto my incision...I bite my lip. I imagine at some point I will no longer hurt in that region but I'm sure it will just take some time. Its amazing that I too can still feel my uterus contracting. Sometimes when I feel it, I have to stop a second and think because it almost feels like baby kicks. But of course, its not that...thank goodness for now. Maybe some other day ( and thats a whole other topic within itself...that I will address also) but not anytime soon!
So I was told I would have a longer recovery time, bleed anywhere from 6 to 8 weeks and also Dr. Pierson had used staples in me, not stitches, becasue she thought they healed better. I didn't realize this at the time but of course every doctor is different and they have their ways of doing things. She had put 14 staples into me. As crazy as it was to see those things in me, they didn't hurt a bit when she took them out. I had an appointment that Friday...4 days after the c-section...to have them removed. I was kind of worried that when she took them out my stomach would spill open and my intestines would come rolling out. But she told me that the skin actually heals itself and reconnects within 24 hours. So of course that didn't happen. Also, because all the nerves had been cut, I was almost numb around the incision site. She also informed me that that would go away, one day.
I feel like I could go on to document my day to day recovery in the hospital after Kenley was born but I feel its just better to jump right in to her time in the NICU. So I'll pick back up the day of my discharge...Thursday, March 4th. They had told me to take my time, don't rush out, as long as I was gone by midnight there was no problem. So Jim and I took our time getting the room together, going down to visit Kenley, I even ordered dinner for that evening from room service. We got all packed up, Jim loaded the car and it was time to leave. I got my nurse to sign my discharge papers and mom and dad told me they would meet us there to see us one more time and say goodnight to Kenely. We went into the NICU and saw Kenley. Spoke to her. Told her we loved her. We would be back to see her the next day. And that is when the tears came. I cried leaving her room...walking down the hall...my mom gave me a hug and I started to sob. I cried as we left the hospital and as I waited for Jim to bring the car around and pick me up and I cried non-stop the whole way home. My heart was broken in two. Here I just gave birth to a 2 pound baby and I was expected to go home. I wasn't just a minute away if something happened. I was now 20 minutes away, I was sick at the idea of leaving her. I am for sure, in everything that I am to endure from here on out (I could be proven wrong with this but til the day that I am) that was the absolute hardest thing I have ever had to do in my life. I was numb. The only thing I could feel at that point were the tears running down my checks and the heartache I had at leaving my baby. Not to be mean but I am sure other mommys can sympathize but unless you have been in those exact shoes...you have NO IDEA what it is like. I had family that were sad for me, I had friends that were sad for me but I did not have anyone in my life that had had a baby as early as I did and had to leave it knowing that there was a chance she might not make it through the night (anything could have happened) and knowing she would have to be in the hospital for not weeks, but months. (Now my dear friend Erin had a preemie...I mentioned her earlier...and I know she can relate...but her darling baby was not as early as Kenley. <But by no means to diminish her time in the hospital and all that Reilly went through> And since then I have had a dear family friend have 30 week twins and I know she can relate...God Bless her b/c her journey has been WAY harder then mine) Other than Jim knowing my pain, I felt alone. But the ironic thing was, I was far from alone. I had my parents, my sister, friends...so many people that loved me and this baby but they didn't know how I felt and what I was going through on the inside. I almost became a different person those 57 days she was in the NICU. I was no longer just Megan...I was Megan, mommy to a 29 weeker and my soul purpose was to wake up in the morning for that baby, spend as much time as I could with her during the day and let her know as much as I could that I loved her and I was going to go through this ordeal with her until the day she came home with me.
We ended up stopping to grab a couple slices of pizza on the way home, of course because there was no food in the house, and I remember thinking, "I'm not even hungry." But I knew I needed to eat and Jim certainly was not going to let me go without eating that night. I sat in the car...and cried...as I waited for him to go inside and get the food. I then waited, and cried some more, as we stopped at Harris Teeter so he could go in and grab some drinks. When we got home, I waited outside while he leashed up the dogs and took them outside. I went inside and gated myself in our bedroom because I knew as soon as they saw me they would get excited and want to come love on me. I hadn't seen them in over a week. I couldn't let them near me for a couple days because I was so sore and I was worried I would get a paw in the abdomen. I sit in the room for a bit and start to get my pjs on so I can eat dinner in bed and then go to sleep. I remember it like it happened yesterday. I went into the bathroom, used the bathroom and all of a sudden had the chills hit me. Like when you get sick and you get the chills all over your body. I was suddenly cold. I stood up in the bathroom and remember not being able to even walk because I was shaking so badly. I told Jim I couldn't do it...meaning I couldn't walk into the bedroom...I think he thought I was referencing this whole ordeal and he tells me yes you can. And I then tell him, no I need your help...I can't walk into the bedroom. So he helps me into bed and I am still shivering and crying again at this point and I think I might have been having a small panic attack. I had a hard time getting my breath and my heart was racing. He sat down beside me and helped me to get my breath and he helped calm me down. I must have laid in bed for about 10/15 minutes before I started to feel better. While that was happening I remember having a split second thought that I needed to go to the hospital...Jim was going to have to call an ambulance. After I calmed down, I had a ton of blankets on me because I had been shaking, I suddenly became warm. Then I thought I was coming down with something. I had not had any food in me for awhile so Jim grabs a slice a pizza and sits with me while I eat it and that helps. I remember feeling so sad and helpless at that point. I forced the pizza down because it seemed to help and all I wanted to do was crawl into a dark hole and not come out until she was home with us. The Lord does not give us more than we can handle...This I am sure of still to this day.
They had given us a number to the NICU and a code so we could call any time, day or night, and give them our code and we could check on Kenley. So we called that night to see how she was. That began a twice daily occurance in our house hold for 2 months. A call in the morning and a call at night before bed.
It is almost midnight and I honestly could write for another hour or so but I should go to bed now. I'll start with Day 4 of Kenley's time in the NICU with the next post.
Kenley Schuyler was born weighing 2 lbs. 7oz. and she was 14 inches long. Jim told me that they re-weighed her a few times when they got her down to her room because they had a hard time accepting she weighed that much. When we had our ultrasound at the hospital on that previous Thursday, they had told us she was exactly 2 lbs. So the fact that she had gained 7 ozs. in just 4 days was nuts! But thats what she weighed. They had told me that I could leave on Thursday if I wanted to but if I wanted to stay until Friday I could also. All due to my rough delivery.
When Dr. Pierson went in to get Kenley, she got her feet and torso out but not quick enough. My uterus clamped around Kenley's head and that is where the tugging and pulling came from. She had tried to get Kenley out without having to make anymore cuts into me but it just didn't work. She had to make a T like incision into my uterus to get Kenley's head out so therefore I would have a longer recovery time then most c-section women. I imagine that is why to this day I am still sore in my abdomen. Of course not as nearly as sore as I have been but I am still sensative down there. When Kenley lies on her back and pushes with her feet right onto my incision...I bite my lip. I imagine at some point I will no longer hurt in that region but I'm sure it will just take some time. Its amazing that I too can still feel my uterus contracting. Sometimes when I feel it, I have to stop a second and think because it almost feels like baby kicks. But of course, its not that...thank goodness for now. Maybe some other day ( and thats a whole other topic within itself...that I will address also) but not anytime soon!
So I was told I would have a longer recovery time, bleed anywhere from 6 to 8 weeks and also Dr. Pierson had used staples in me, not stitches, becasue she thought they healed better. I didn't realize this at the time but of course every doctor is different and they have their ways of doing things. She had put 14 staples into me. As crazy as it was to see those things in me, they didn't hurt a bit when she took them out. I had an appointment that Friday...4 days after the c-section...to have them removed. I was kind of worried that when she took them out my stomach would spill open and my intestines would come rolling out. But she told me that the skin actually heals itself and reconnects within 24 hours. So of course that didn't happen. Also, because all the nerves had been cut, I was almost numb around the incision site. She also informed me that that would go away, one day.
I feel like I could go on to document my day to day recovery in the hospital after Kenley was born but I feel its just better to jump right in to her time in the NICU. So I'll pick back up the day of my discharge...Thursday, March 4th. They had told me to take my time, don't rush out, as long as I was gone by midnight there was no problem. So Jim and I took our time getting the room together, going down to visit Kenley, I even ordered dinner for that evening from room service. We got all packed up, Jim loaded the car and it was time to leave. I got my nurse to sign my discharge papers and mom and dad told me they would meet us there to see us one more time and say goodnight to Kenely. We went into the NICU and saw Kenley. Spoke to her. Told her we loved her. We would be back to see her the next day. And that is when the tears came. I cried leaving her room...walking down the hall...my mom gave me a hug and I started to sob. I cried as we left the hospital and as I waited for Jim to bring the car around and pick me up and I cried non-stop the whole way home. My heart was broken in two. Here I just gave birth to a 2 pound baby and I was expected to go home. I wasn't just a minute away if something happened. I was now 20 minutes away, I was sick at the idea of leaving her. I am for sure, in everything that I am to endure from here on out (I could be proven wrong with this but til the day that I am) that was the absolute hardest thing I have ever had to do in my life. I was numb. The only thing I could feel at that point were the tears running down my checks and the heartache I had at leaving my baby. Not to be mean but I am sure other mommys can sympathize but unless you have been in those exact shoes...you have NO IDEA what it is like. I had family that were sad for me, I had friends that were sad for me but I did not have anyone in my life that had had a baby as early as I did and had to leave it knowing that there was a chance she might not make it through the night (anything could have happened) and knowing she would have to be in the hospital for not weeks, but months. (Now my dear friend Erin had a preemie...I mentioned her earlier...and I know she can relate...but her darling baby was not as early as Kenley. <But by no means to diminish her time in the hospital and all that Reilly went through> And since then I have had a dear family friend have 30 week twins and I know she can relate...God Bless her b/c her journey has been WAY harder then mine) Other than Jim knowing my pain, I felt alone. But the ironic thing was, I was far from alone. I had my parents, my sister, friends...so many people that loved me and this baby but they didn't know how I felt and what I was going through on the inside. I almost became a different person those 57 days she was in the NICU. I was no longer just Megan...I was Megan, mommy to a 29 weeker and my soul purpose was to wake up in the morning for that baby, spend as much time as I could with her during the day and let her know as much as I could that I loved her and I was going to go through this ordeal with her until the day she came home with me.
We ended up stopping to grab a couple slices of pizza on the way home, of course because there was no food in the house, and I remember thinking, "I'm not even hungry." But I knew I needed to eat and Jim certainly was not going to let me go without eating that night. I sat in the car...and cried...as I waited for him to go inside and get the food. I then waited, and cried some more, as we stopped at Harris Teeter so he could go in and grab some drinks. When we got home, I waited outside while he leashed up the dogs and took them outside. I went inside and gated myself in our bedroom because I knew as soon as they saw me they would get excited and want to come love on me. I hadn't seen them in over a week. I couldn't let them near me for a couple days because I was so sore and I was worried I would get a paw in the abdomen. I sit in the room for a bit and start to get my pjs on so I can eat dinner in bed and then go to sleep. I remember it like it happened yesterday. I went into the bathroom, used the bathroom and all of a sudden had the chills hit me. Like when you get sick and you get the chills all over your body. I was suddenly cold. I stood up in the bathroom and remember not being able to even walk because I was shaking so badly. I told Jim I couldn't do it...meaning I couldn't walk into the bedroom...I think he thought I was referencing this whole ordeal and he tells me yes you can. And I then tell him, no I need your help...I can't walk into the bedroom. So he helps me into bed and I am still shivering and crying again at this point and I think I might have been having a small panic attack. I had a hard time getting my breath and my heart was racing. He sat down beside me and helped me to get my breath and he helped calm me down. I must have laid in bed for about 10/15 minutes before I started to feel better. While that was happening I remember having a split second thought that I needed to go to the hospital...Jim was going to have to call an ambulance. After I calmed down, I had a ton of blankets on me because I had been shaking, I suddenly became warm. Then I thought I was coming down with something. I had not had any food in me for awhile so Jim grabs a slice a pizza and sits with me while I eat it and that helps. I remember feeling so sad and helpless at that point. I forced the pizza down because it seemed to help and all I wanted to do was crawl into a dark hole and not come out until she was home with us. The Lord does not give us more than we can handle...This I am sure of still to this day.
They had given us a number to the NICU and a code so we could call any time, day or night, and give them our code and we could check on Kenley. So we called that night to see how she was. That began a twice daily occurance in our house hold for 2 months. A call in the morning and a call at night before bed.
It is almost midnight and I honestly could write for another hour or so but I should go to bed now. I'll start with Day 4 of Kenley's time in the NICU with the next post.
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