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.
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