Today, we officially became homeowners, bought our first house. We have been living in this house for almost two weeks, but today we finally made the big purchase. Is it silly how scary, nerve wrecking, and a bit exciting it is to do this? And now as I try to go to sleep, tonight it feels different. I guess because I know it is ours now. We are fully responsible, we are in debt the next 30 years or until we sell, hopefully be able to cover all the expenses. But one thing is different than I expected...tonight struggling to sleep I didn't picture the morning Lua died as I laid down. Something I always always always did in our last house, the house she died in. Of course I'm thinking about it now, but I'm a little relieved that coming to a new house has calmed that down. I don't have to look at the same sights and remember that this light in the hall way was on right before, or the door was in this position, or her equipment was in this spot. None of that is here and it is now really a new beginning. I was worried leaving our old house would be hard, that's where lua lived, slept, laid on the floor, but those memories are still strong in my mind, but the house is the background. When I think of that house I remember coming home from the hospital after delivering lua and having an empty house that should have held a crying new born working on how to nurse. I think about how I went into labor there, the pain I had and the heartache that followed. And mostly I think about her last night, her last moments, my struggle to get her lifeless body breathing again. In the end I guess that house really did hold so much pain over happiness. I mean I won't lie and say there were no good times. Of course there were, but I finally feel set free from having to live that nightmare over and over again and be in that empty house that should have still had a baby with a trach living in it. I hope this buying a house was a smart decision, at least one we dont regret. I hope we can keep this a happy memory making house. And I hope lua can still somewhat some how, be apart of our new house by living in all of our hearts and memories.
To new beginnings, while still honoring the past.
Friday, July 31, 2015
Thursday, July 23, 2015
the Lua disease
In march we started the process of Luas DNA sequencing, where they look at Lua's dna and see if there were obvious mutations or an explanation of what happened to her in her dna to give a diagnosis. Today I received the results to the research and it came back negative. Nothing abnormal that they know of, showed up. So the geneticist said it could be a condition that we do not know about yet, a new mutation or something with the gene that they don't have the technology to understand at this time. In a couple of years we could have someone look at the results again or if we know of another place that may have more advances we could have them look at the results, but for now it will remain unknown. The Lua disease. She was just one of a kind. At her muscle autopsy they said she had an SMA like disease, she didn't have SMA at least not a type that they know the mutations of the genes for at this time. Maybe it is a mutation of SMA but it definitely wasn't the normal one. My results from my SMA test came back with me being an unlikely carrier so it is very unlikely she had it.
I guess the results dont surprise me, so many kiddos with arthrogryposis dont get a diagnosis, I was hoping for some answers and maybe in a few years we will find something out, but at this time we will have to deal with the unknown as always. The nice thing is we shouldn't have to worry about a baby with SMA, typically, because I'm not a carrier and both parents have to be to pass sma to a child. We will also be a little more prepared with the next baby as for watching movement of the baby and preparing to intubate if needed.
seems so terrible that something this bizarre had to happen to her and have to remain so unknown. I just can't help but wonder why.
I guess the results dont surprise me, so many kiddos with arthrogryposis dont get a diagnosis, I was hoping for some answers and maybe in a few years we will find something out, but at this time we will have to deal with the unknown as always. The nice thing is we shouldn't have to worry about a baby with SMA, typically, because I'm not a carrier and both parents have to be to pass sma to a child. We will also be a little more prepared with the next baby as for watching movement of the baby and preparing to intubate if needed.
seems so terrible that something this bizarre had to happen to her and have to remain so unknown. I just can't help but wonder why.
NICU series Sonny
So Sonny gets to keep his name because he has some up coming benefits and will be pretty popular soon!
Sonny and his family are very special to our family! After we had been in the NICU for about a little over a month, someone told us that there was another baby in the NICU with arthrogryposis. We asked if we could meet the parents, we so badly wanted to know how their child was doing, if our two kiddos were similar, we wanted to talk and be able to connect with them! But we were not allowed to be told their names because of the privacy laws the hospital has. We could meet on our own of course, but there was no one who could tell us where he was or who the parents were. We were a little bummed about that but just kept on doing our thing.
One day right before I went to the pumping room, our OT came in and I was telling her how badly I wish we could just run into the family on our own so we could meet them! Our OT agreed she wished we could meet the other family but there really wasn't anything they could do. I went to the pumping room after the conversation and I heard there was a lactation consultant in with another mother. I overheard the conversation, and the thing this mommy needed was a pumping bra, which I had just bought a new one, but I really liked my older one best and felt bad I had wasted my money on a new one... I wasn't sure how to butt in on their conversation, but I just felt so strongly that I needed to offer my extra one to her.. So I just did it! I apologized for cutting in but told her I had an extra one of these and if she wanted it. After that we kept talking for awhile, and as I was cleaning up my equipment I asked her if they were here because their baby was born early, most people have their babies in the NICU for being preemies so I wasn't surprised when she said, Yeah, he was some weeks early," but then she went on and said... "But he has some other issues too, he has what is called arthrogryposis..."
My jaw literally dropped!!! I said, "WHAT?!?!" I think that may have taken her a little back, until I said, My baby has arthrogryposis!!!! We finally met!!!! It was unreal! All because of a pumping bra!!! Now I almost think, I took all that time and energy to buy that bra just so I could meet her! It was truly an amazing moment! To be able to connect to another mother who has a child in a similar situation as yours, when you feel all alone and like no one else can understand how you feel!
To this day, we talk a bunch and keep each other updated with life! Sonny's mom has truly become such a great friend, and we just love their family.
Anyway, on to his story.
Sonny was born with his legs straight, not able to bend. clubfoot, respiratory issues, lack of tongue control, and they were able to diagnose his condition as Wieacker Wolff Syndrome. There have been less than 20 cases of this syndrome, and I believe there is currently no one living with this condition in the USA besides Sonny. Sonny's condition was found at their 20 week ultra sound, where they saw that something wasn't right, his hands and legs, they could see the contractures and told the family that he would most likely pass away at birth. As they prepared to have this baby, they also had to go ahead and prepare a funeral. Imagine the most exciting day for someone who is pregnant and knowing that they have to have a funeral ready just in case! Devastation and not how any mother want's to spend the rest of her pregnancy! But to doctors surprise, he made it through his birth! He had his set of issues along the way. He was put on pain medication to help with the pain he may have from his contractures and moving with them, he was having troubles swallowing and eating, and some difficulties with breathing. After all of those things, he then started to have some seizures, but those were able to figure out and get under control. Sonny spent 6 weeks in the hospital and during that time he ended up having a gtube put in. He was then able to go home on oxygen.
Sonny gets a part two to come later when we have internet and a working computer, bit for now he is doing well and growing like a weed!
Sonny and his family are very special to our family! After we had been in the NICU for about a little over a month, someone told us that there was another baby in the NICU with arthrogryposis. We asked if we could meet the parents, we so badly wanted to know how their child was doing, if our two kiddos were similar, we wanted to talk and be able to connect with them! But we were not allowed to be told their names because of the privacy laws the hospital has. We could meet on our own of course, but there was no one who could tell us where he was or who the parents were. We were a little bummed about that but just kept on doing our thing.
One day right before I went to the pumping room, our OT came in and I was telling her how badly I wish we could just run into the family on our own so we could meet them! Our OT agreed she wished we could meet the other family but there really wasn't anything they could do. I went to the pumping room after the conversation and I heard there was a lactation consultant in with another mother. I overheard the conversation, and the thing this mommy needed was a pumping bra, which I had just bought a new one, but I really liked my older one best and felt bad I had wasted my money on a new one... I wasn't sure how to butt in on their conversation, but I just felt so strongly that I needed to offer my extra one to her.. So I just did it! I apologized for cutting in but told her I had an extra one of these and if she wanted it. After that we kept talking for awhile, and as I was cleaning up my equipment I asked her if they were here because their baby was born early, most people have their babies in the NICU for being preemies so I wasn't surprised when she said, Yeah, he was some weeks early," but then she went on and said... "But he has some other issues too, he has what is called arthrogryposis..."
My jaw literally dropped!!! I said, "WHAT?!?!" I think that may have taken her a little back, until I said, My baby has arthrogryposis!!!! We finally met!!!! It was unreal! All because of a pumping bra!!! Now I almost think, I took all that time and energy to buy that bra just so I could meet her! It was truly an amazing moment! To be able to connect to another mother who has a child in a similar situation as yours, when you feel all alone and like no one else can understand how you feel!
To this day, we talk a bunch and keep each other updated with life! Sonny's mom has truly become such a great friend, and we just love their family.
Anyway, on to his story.
Sonny was born with his legs straight, not able to bend. clubfoot, respiratory issues, lack of tongue control, and they were able to diagnose his condition as Wieacker Wolff Syndrome. There have been less than 20 cases of this syndrome, and I believe there is currently no one living with this condition in the USA besides Sonny. Sonny's condition was found at their 20 week ultra sound, where they saw that something wasn't right, his hands and legs, they could see the contractures and told the family that he would most likely pass away at birth. As they prepared to have this baby, they also had to go ahead and prepare a funeral. Imagine the most exciting day for someone who is pregnant and knowing that they have to have a funeral ready just in case! Devastation and not how any mother want's to spend the rest of her pregnancy! But to doctors surprise, he made it through his birth! He had his set of issues along the way. He was put on pain medication to help with the pain he may have from his contractures and moving with them, he was having troubles swallowing and eating, and some difficulties with breathing. After all of those things, he then started to have some seizures, but those were able to figure out and get under control. Sonny spent 6 weeks in the hospital and during that time he ended up having a gtube put in. He was then able to go home on oxygen.
Sonny gets a part two to come later when we have internet and a working computer, bit for now he is doing well and growing like a weed!
Monday, July 13, 2015
NICU baby Isaiah
There was this very upbeat, talkative, friendly mom that stayed at the Ronald house. She went to the NICU every day, the rest of her family would visit on weekends or when they could. They are a very admirable family to watch and learn from. The strength they have in their faith is so strong, I could only wish to be able to have that type of strength the whole family shared.
I met the mother to Isiah again in the van on our way to the NICU. She turned around and started asking me questions and sparking up a conversation and telling me we were in the same pod. I don't know what is wrong with me that I literally noticed no one around us?! But we had May with us, and Everyone noticed her, so therefore we were noticed. Anyway, this mom and her son were our neighbors in the NICU! She started telling me her story on our way to the NICU.
Her and her husband thought they were done having kids. They just had their oldest graduate high school, and they were prepared for their next steps in life. But God had a different idea for them, because come the summer of 2013 they found out she was pregnant! She was watched very closely because of her age, and soon they found that her son had tested positive for Down syndrome. They soon found that he had an enlarge heart which then, as the pregnancy progressed, fluid was beginning to show up around the heart. When they found that she was sent to be induced.
After he was born, his white blood cells were higher than normal, even for babies with Trisomy 21. He had a disorder which caused leukemia like white blood cells and they were trying to figure out the amount of chemo he would need to receive. By doing this, that should also help with the fluid around the heart.
I had met her after all of this had already happened, and where they were at this point was working on trying to get him to eat, monitoring his breathing and talking about moving to a gtube. He was working on taking bottles, but then started getting these choking breathing difficulties. They had looked at many different reasons as to why this was going on, thinking it had to do something with his feeds. They had started fortifying his breast milk, and considered the possibility of him being allergic to something in the feeds. The mom, Kat, had then went off all dairy products to try to solve his feeding issues.
These were the things she was currently going through with her son when we met. She had been in the NICU for a little over a month before we got there. She was one of my greatest support systems! I loved talking to her and May adored Isaiah, and would constantly go to their pod and see her and the baby. We were able to complain together about the doctors and their decisions, and which nurse was difficult to work with. it was nice to have someone that was so Right There in the same position you were in.
Their journey went on for awhile during their stay in the NICU. His feedings were an issue, gaining weight, and breathing. They finally decided they would go ahead with the gtube and about the time that he was schedule to get the procedure done he got a stomach infection. Sometimes mother knows best and doctors should really take that into consideration- it is possible the infection occurred from trying to fortify his milk again after stopping. After this, it seemed like every time he was ready for the surgery an infection or something would come up! But finally he was able to go in and get his gtube done.
Next process was to get him to be able to tolerate his feeds and be able to head to home. By the end of the month, they were on their way! It was so sad to see her go, yet it was so wonderful! They had spent 3 months in the NICU, and that was only the start of the journey.
He went home and would do good but, as always, things would come up with breathing, feeding, not gaining weight, one thing after another. By the time we were ready to leave the NICU we some some familiar faces back in the NICU. They had returned, which is amazing since usually once a baby has left the NICU they don't get to come back, but he had super mom to help him get the doctors that know him best! He had been aspirating and got pneumonia. They also knew his trachea was getting compressed by an artery and had that to look into yet! They were able to go in and remove the artery to try and help with the aspirating and other issues that were coming up. They were in the NICU a second time for about 2 weeks! Eventually were on their way back home!
Back home the family continued to have issues come up. Mostly now with breathing and not gaining weight. They were giving him the term failure to thrive if he wouldn't start gaining weight soon. This battle went on all winter into spring when they eventually end up back at childrens hospital to discuss what else they could do.
The next thing that childrens hospital wanted to do was to place a trach. His lungs were not good and he was using all his energy to breathe, which is why they figure he wasn't gaining weight. Their trach theory though, was not promising it would fix everything, and with the possibility of it not curing everything they decided against the trach, which I think was best for Isaiah too, and were then sent home on palliative care. If you have never heard of palliative care before, well one you are lucky, but it is also basically a support system to go home with extra care to make your child comfortable as you wait for them to pass on. Almost like hospice care for the older generation. Although palliative care promised me it wasn't this, it is still the process of trying to make things easier for the family as a child has a life threatening condition.
You can imagine a parents feelings about being told their child will be on this type of care, but Isaiah is no ordinary boy, and their faith has gotten them through a ton, it hasn't failed for them yet because, a new doctor comes into the picture and decides to put him on steroids to help his lungs open up. It does the trick! Now a month or so later, he is growing and gaining weight like crazy!!! He is no longer on the failure to thrive list!
He is one who will grow up to do the most amazing things! He has the most amazing family to cheer him on, it would be impossible for him to not accomplish only the greatest things!
Grow little baby grow, we are all on your side!
I met the mother to Isiah again in the van on our way to the NICU. She turned around and started asking me questions and sparking up a conversation and telling me we were in the same pod. I don't know what is wrong with me that I literally noticed no one around us?! But we had May with us, and Everyone noticed her, so therefore we were noticed. Anyway, this mom and her son were our neighbors in the NICU! She started telling me her story on our way to the NICU.
Her and her husband thought they were done having kids. They just had their oldest graduate high school, and they were prepared for their next steps in life. But God had a different idea for them, because come the summer of 2013 they found out she was pregnant! She was watched very closely because of her age, and soon they found that her son had tested positive for Down syndrome. They soon found that he had an enlarge heart which then, as the pregnancy progressed, fluid was beginning to show up around the heart. When they found that she was sent to be induced.
After he was born, his white blood cells were higher than normal, even for babies with Trisomy 21. He had a disorder which caused leukemia like white blood cells and they were trying to figure out the amount of chemo he would need to receive. By doing this, that should also help with the fluid around the heart.
I had met her after all of this had already happened, and where they were at this point was working on trying to get him to eat, monitoring his breathing and talking about moving to a gtube. He was working on taking bottles, but then started getting these choking breathing difficulties. They had looked at many different reasons as to why this was going on, thinking it had to do something with his feeds. They had started fortifying his breast milk, and considered the possibility of him being allergic to something in the feeds. The mom, Kat, had then went off all dairy products to try to solve his feeding issues.
These were the things she was currently going through with her son when we met. She had been in the NICU for a little over a month before we got there. She was one of my greatest support systems! I loved talking to her and May adored Isaiah, and would constantly go to their pod and see her and the baby. We were able to complain together about the doctors and their decisions, and which nurse was difficult to work with. it was nice to have someone that was so Right There in the same position you were in.
Their journey went on for awhile during their stay in the NICU. His feedings were an issue, gaining weight, and breathing. They finally decided they would go ahead with the gtube and about the time that he was schedule to get the procedure done he got a stomach infection. Sometimes mother knows best and doctors should really take that into consideration- it is possible the infection occurred from trying to fortify his milk again after stopping. After this, it seemed like every time he was ready for the surgery an infection or something would come up! But finally he was able to go in and get his gtube done.
Next process was to get him to be able to tolerate his feeds and be able to head to home. By the end of the month, they were on their way! It was so sad to see her go, yet it was so wonderful! They had spent 3 months in the NICU, and that was only the start of the journey.
He went home and would do good but, as always, things would come up with breathing, feeding, not gaining weight, one thing after another. By the time we were ready to leave the NICU we some some familiar faces back in the NICU. They had returned, which is amazing since usually once a baby has left the NICU they don't get to come back, but he had super mom to help him get the doctors that know him best! He had been aspirating and got pneumonia. They also knew his trachea was getting compressed by an artery and had that to look into yet! They were able to go in and remove the artery to try and help with the aspirating and other issues that were coming up. They were in the NICU a second time for about 2 weeks! Eventually were on their way back home!
Back home the family continued to have issues come up. Mostly now with breathing and not gaining weight. They were giving him the term failure to thrive if he wouldn't start gaining weight soon. This battle went on all winter into spring when they eventually end up back at childrens hospital to discuss what else they could do.
The next thing that childrens hospital wanted to do was to place a trach. His lungs were not good and he was using all his energy to breathe, which is why they figure he wasn't gaining weight. Their trach theory though, was not promising it would fix everything, and with the possibility of it not curing everything they decided against the trach, which I think was best for Isaiah too, and were then sent home on palliative care. If you have never heard of palliative care before, well one you are lucky, but it is also basically a support system to go home with extra care to make your child comfortable as you wait for them to pass on. Almost like hospice care for the older generation. Although palliative care promised me it wasn't this, it is still the process of trying to make things easier for the family as a child has a life threatening condition.
You can imagine a parents feelings about being told their child will be on this type of care, but Isaiah is no ordinary boy, and their faith has gotten them through a ton, it hasn't failed for them yet because, a new doctor comes into the picture and decides to put him on steroids to help his lungs open up. It does the trick! Now a month or so later, he is growing and gaining weight like crazy!!! He is no longer on the failure to thrive list!
He is one who will grow up to do the most amazing things! He has the most amazing family to cheer him on, it would be impossible for him to not accomplish only the greatest things!
Grow little baby grow, we are all on your side!
NICU babies Lora and Maisie
I met the mother of these twin babies in a very unique and unfortunate, for me, way. I had just gone into the room where the freezer is to store breast milk, I had about 8 bottles of milk with me that needed to be stored. As I was putting them away I heard someone say, "Hi" and at that exact moment I dropped and spilled 4 bottles of breast milk!!!! 4 of them!!! Everywhere they went, all over the floor!! Uuuh I was so upset and she helped me cleaned it up and sympathized with me over how terrible it is to lose any of your milk. While we were cleaning up the mess she told me she had her twins in the NICU and they each had their own type of difficulties. They were due in May but were born a few months before that, she had been in the NICU for awhile by the time we met. We briefly gave our introductions and what our babies were in for but then had to leave to get to our little ones.
Later, I met her in the waiting room by the NICU and we had lunch together. Her story is insane!!! She was 35 when she got pregnant and was considered high risk. She had gone in to all her appointments and had, I believe one ultra sound. Her current doctor told her she was pregnant with one baby. She later went in for her 20 week ultra sound and the tech there had asked her some questions about if she had any ultra sounds before this, of course they said yes, so then he went on to ask her, "can you tell me what you see here?"
There were 2 heart beats! 2 babies! They said excitedly that they saw the two heart beats! And the tech said, that is right, you are having twins but the second one is not doing good at all. Tests and tests start to be ran and they were trying to keep the babies in there as long as possible but they were getting worse and she then had to have a csection 26 weeks.
By the time we had met, her one baby was doing pretty well and were waiting for her to gain weight. They guessed by the time it was their due date she would be able to go home. Her second baby had a lot of other issues going on with her stomach/digestive issues. She wasn't gaining weight and they were adding vegetable oil to her breast milk to try and help her to gain weight.
They had many ups and downs while they were in the NICU, but she was the most positive person in the whole NICU! She looked at everything in such a good light, she was just so blessed to have her babies. I loved talking to her, she always made me feel better, even while she is telling me about the struggles her second baby was having. By the time of their due date, her first twin was able to go home! That became a harder battle for them. Both the mom and dad had been very use to spending all their days in the NICU with both babies. But once the sister went home, they couldn't bring her back to visit her sister, she wasn't allowed in the NICU. They then had to try to split their time between taking care of their baby at home and their baby at the NICU.
We started to see them a lot less, but I can't even imagine how difficult that had to be for them. At least the baby at the NICU had nurses that watched her, but baby at home didn't have an extra set of hands helping out! It was not much longer after the sister went home that the next baby got to go home too! I remember the babies primary nurses were talking about how they were both gone now and she had to find new baby to become the primary nurse for. But they were happy all being home together doing well!
I have tried really hard to get in contact with them after we left, but haven't been able to accomplish this yet. I hope they are all doing well and haven't had to make many trips back to the hospital. They make such a perfect little family!
Later, I met her in the waiting room by the NICU and we had lunch together. Her story is insane!!! She was 35 when she got pregnant and was considered high risk. She had gone in to all her appointments and had, I believe one ultra sound. Her current doctor told her she was pregnant with one baby. She later went in for her 20 week ultra sound and the tech there had asked her some questions about if she had any ultra sounds before this, of course they said yes, so then he went on to ask her, "can you tell me what you see here?"
There were 2 heart beats! 2 babies! They said excitedly that they saw the two heart beats! And the tech said, that is right, you are having twins but the second one is not doing good at all. Tests and tests start to be ran and they were trying to keep the babies in there as long as possible but they were getting worse and she then had to have a csection 26 weeks.
By the time we had met, her one baby was doing pretty well and were waiting for her to gain weight. They guessed by the time it was their due date she would be able to go home. Her second baby had a lot of other issues going on with her stomach/digestive issues. She wasn't gaining weight and they were adding vegetable oil to her breast milk to try and help her to gain weight.
They had many ups and downs while they were in the NICU, but she was the most positive person in the whole NICU! She looked at everything in such a good light, she was just so blessed to have her babies. I loved talking to her, she always made me feel better, even while she is telling me about the struggles her second baby was having. By the time of their due date, her first twin was able to go home! That became a harder battle for them. Both the mom and dad had been very use to spending all their days in the NICU with both babies. But once the sister went home, they couldn't bring her back to visit her sister, she wasn't allowed in the NICU. They then had to try to split their time between taking care of their baby at home and their baby at the NICU.
We started to see them a lot less, but I can't even imagine how difficult that had to be for them. At least the baby at the NICU had nurses that watched her, but baby at home didn't have an extra set of hands helping out! It was not much longer after the sister went home that the next baby got to go home too! I remember the babies primary nurses were talking about how they were both gone now and she had to find new baby to become the primary nurse for. But they were happy all being home together doing well!
I have tried really hard to get in contact with them after we left, but haven't been able to accomplish this yet. I hope they are all doing well and haven't had to make many trips back to the hospital. They make such a perfect little family!
Sunday, July 12, 2015
NICU Series Baby Em
I was going to try to write the stories by who we met first, but I'm not 100% sure who that was anymore, and I wanted to start with the lighter stories and move on from there. I also realized that this will be from my point of view, so this will probably be not as great of detail as if the parents were telling it, but my hopes is to just give a glimpse of all the different types of NICU stories that are out there. I know that usually when I think of a NICU I think of preemie babies being the only ones in there, but that is not always the case! Usually most babies are a bit younger, but Lua was full term in the nicu so not all the time are babies in for being born too early.
This will be a very short story since it is the one that I remember the least, but what I mostly remember is the connection made with the mother, even for the short time they were in the NICU.
Baby Em.
I first met her father at the Ronald house. We had dinner with him one night and he told use how he had a 2 1/2 year old daughter and their new born was in the NICU. She was one of the handful of cases where her esophagus didn't connect correctly to her stomach, or Esophageal atresia. This meant she was having difficulty eating and she would require surgery to repair the esophagus.
I regret not writing down stories sooner because now I cannot remember if she was born early or if she was full term, but she wasn't the first baby that we knew of that had this happen in the hospital we were at. She was actually the second baby we heard that had this, but there had been, I believe Em's mom said, the 7th case the hospital had seen, and they were all from the Green Bay area!
It was easy to relate to this family being that they had 2 daughters like us and both about the same ages! They were very scared and worried for their little baby! It was hard for the dad to be there by himself, but with in the next few days his daughter and wife had arrived to the Ronald house.
I met the mom on the bus to the NICU. She turned around to me and said, we are in the same pod! I was really focused on Lua I had really not looked around at my pod except for the baby across from us. We started chatting and talking about what we were both in for after that! Baby Em was a very cute, sweet little baby, and I loved seeing their pod full of people and their little baby moving around in her little crib. Em had her surgery pretty soon after she had arrived at the hospital and started her recovery process, she did have some troubles eating and gaining weight for a little while. I remember talking to the mom one day after we had gotten back to the Ronald house. It broke my heart, she was in tears for the fear of how long her baby would be in the NICU. She wanted so badly to get her daughter back to her home town, and keep working on feedings and go for daily weight checks at her hospital. This was so hard for her, I wish I could have just told her that things would be okay! And she would get there, it could have been so much worse! But any mother who has a child in the NICU does Not want to hear those things. Just because my daughters situation was waaay worse than hers, it still wouldn't be right to tell her, well you could have a baby with no muscle and have the doctors give you the option to let your baby die... Anyway, that mother was a hero though, because the next day she went to the doctors and gave them the plan! They were to be discharged and she would take her baby in daily to make sure she was gaining weight. After a, what was probably very long 6 or 7 days for them, they were headed for home!
I wonder how all the babies are doing that we met, but I never hear from this family any more, so I really wonder how they are doing and how that baby is growing! Wow she would be a year old already too!
This will be a very short story since it is the one that I remember the least, but what I mostly remember is the connection made with the mother, even for the short time they were in the NICU.
Baby Em.
I first met her father at the Ronald house. We had dinner with him one night and he told use how he had a 2 1/2 year old daughter and their new born was in the NICU. She was one of the handful of cases where her esophagus didn't connect correctly to her stomach, or Esophageal atresia. This meant she was having difficulty eating and she would require surgery to repair the esophagus.
I regret not writing down stories sooner because now I cannot remember if she was born early or if she was full term, but she wasn't the first baby that we knew of that had this happen in the hospital we were at. She was actually the second baby we heard that had this, but there had been, I believe Em's mom said, the 7th case the hospital had seen, and they were all from the Green Bay area!
It was easy to relate to this family being that they had 2 daughters like us and both about the same ages! They were very scared and worried for their little baby! It was hard for the dad to be there by himself, but with in the next few days his daughter and wife had arrived to the Ronald house.
I met the mom on the bus to the NICU. She turned around to me and said, we are in the same pod! I was really focused on Lua I had really not looked around at my pod except for the baby across from us. We started chatting and talking about what we were both in for after that! Baby Em was a very cute, sweet little baby, and I loved seeing their pod full of people and their little baby moving around in her little crib. Em had her surgery pretty soon after she had arrived at the hospital and started her recovery process, she did have some troubles eating and gaining weight for a little while. I remember talking to the mom one day after we had gotten back to the Ronald house. It broke my heart, she was in tears for the fear of how long her baby would be in the NICU. She wanted so badly to get her daughter back to her home town, and keep working on feedings and go for daily weight checks at her hospital. This was so hard for her, I wish I could have just told her that things would be okay! And she would get there, it could have been so much worse! But any mother who has a child in the NICU does Not want to hear those things. Just because my daughters situation was waaay worse than hers, it still wouldn't be right to tell her, well you could have a baby with no muscle and have the doctors give you the option to let your baby die... Anyway, that mother was a hero though, because the next day she went to the doctors and gave them the plan! They were to be discharged and she would take her baby in daily to make sure she was gaining weight. After a, what was probably very long 6 or 7 days for them, they were headed for home!
I wonder how all the babies are doing that we met, but I never hear from this family any more, so I really wonder how they are doing and how that baby is growing! Wow she would be a year old already too!
Thursday, July 9, 2015
NICU Series Lua part 2
After we heard the options of either letting our daughter go, or get her the trach, we asked many people around for other options, we were told from some doctors we should give it another try to extubate her before making the final decision, and some said we should just go ahead with the trach. My husband was sure she could breathe on her own if she just got a little bigger or maybe this time they could try something different when they extubated her. We went ahead and did another extubation, but the doctor doing it didn't want to try as hard as the first doctor and as soon as she couldn't do it, they started the intubating process again. When they bent her neck back to put the tube back in, she was able to breathe on her own, but the problem is they way she was able to breathe with out extra support was not secure enough for her to go home. We proceeded with the trach and gtube surgeries and at 4 weeks old she got her trach put in.
When she came back with her trach, we were told to go head and get lunch or whatever we want because she was pretty heavily sedated and would probably sleep for the next 2 hours. Yeah, it was like 20 mins and she started opening her eyes. I told the nurse but she rolled her eyes at me and then I said, look, she's awake! "Oh well I guess she is." Not a favorite nurse of mine...
Anyway, she was a trooper, and she wasn't going to miss a second of her time on earth.
We started learning all the cares and things we would have to do with her. Everyone has secretions, we clear them by coughing, or swallowing... when you have a trach, you need to be suctioned to get the secretions out... SUCTIONED! A catheter down her little tube, quick enough to not stop her from breathing for too long, but not too quick so you miss anything. I felt like I almost died when they showed me what had to be done the first time. There was no way. Noooooo way, I would be able to do this when I took her home. I was sorry to her but, when I saw everything that needed to be done I just came to the terms that we would never leave the hospital!
The next few days I had this amazing nurse who sat down with me and went through a book of all the cares and explained to me how everything worked and that helped so insanely much! I started to feel way more comfortable with everything we had to do.
The next process was to see if she could breathe with out having the vent. If she needed the vent, we would not be able to go home until she was 10lbs because that is what the home vents could support. We really wanted her to be on the trach collar, and the trach collar is tubing that gives humidified air for her trach, since she isnt using her nose to humidify like we do. This was a huge stressful time! We so badly wanted to go home, and she needed to be off the vent all the time for like 2 weeks before she could go home.
We started with 2 hours, and when she was put on it, she acted like nothing even happened to her! She did amazing, she jumped to 4 hours pretty quickly, and she was on her way!!! She blew me away how well she could do with out the vent! Then we hit the 6 hour mark and disaster struck!
A nurse she had off and on during the weekend came in, and she decided to do Lua's trach cares on her own, even though no nurse was suppose to be doing her trach cares because me and my husband requested to do all of them so we could get as much practice as possible! While this nurse was doing the trach cares, she sat Lua up totally and Lua's oxygen dropped! She started struggling and it took them a bit to get her back up. This nurse was claiming that Lua just couldn't handle the trach collar and needed to be on the vent. Up until this point Lua had Never been sat up totally like how she did it. Not even during her therapies. We had been slowly working on it but had not gotten to that position. Now this nurse is running her mouth telling all the doctors that she couldn't take it and they stopped with the trach collar. This incident cost us probably an extra 2 weeks in the NICU all because she was so sure she knew what was best. She told us this is the only way you are ever suppose to do trach cares, and that was 100% wrong! We ended up requesting to not get this nurse again, which was disappointing because before this we really did like her.
After a break for a few days, they decided to go back at it with the trials. She again went super fast through all the hours until she hit 6 again!!! I got a call at 6:30 that she had a fever since about 3am. Again they stopped the trials, she got her first antibiotics, and all tests came back looking good so I guess it was just a random type thing. But now we have almost every doctor saying Lua wasn't going to be able to get off the vent.
Then something magical happened. We got a new doctor! He came in, he questioned why she wasnt doing the 6 hour mark. They were giving him all the reasons and things that happened and he disagreed, he said we don't know if she is not able to do it, or if she was having other issues come up. So he got a new monitor on her, one that monitors her carbon dioxide and it turns out that she was keeping those levels at a good range!
In the mean time, while we worked on getting off the vent, Lua kept improving with her therapies, her legs started straightening out very well! Her little feets were almost perfect! And she started getting water therapy! Where she could move in there! She was the first baby to get to go in the little whirl pool! Then we worked with secretions that liked to bubble out he trach!!!! We debated doing something to help with her secretions, but I don't know, I got the feeling they were lazy with us because we were almost on our way out and ended up doing nothing to help her with them.
And to top everything off, 2 weeks before we were able to go home, Lua had her gtube button changed out and then she started throwing up! I didn't even know she could throw up! But she started doing it. She got to have a trip down to get her belly looked at, which was awesomely nerve wrecking for me! But she did fine, of course she did, she always blew me away with all the things she could tackle.
We had to fight with the trach team over and over to get nursing set up and for them to get a date to let her go home, but we were getting close to going home!!! We got a home nurse, she only lasted 3 weeks though, and we were learning about all our equipment we would go home with. The next step was to have our independent care, which meant staying in a room with her by ourselves, with our own equipment, doing everything alone, and overnight!
It was never wrecking, but it went really well! She did great, she was the best sleeper! Her pulse ox did say she dropped her stats a little bit there, but her hospital one didn't drop, so that was a bit confusing and scary!!! We worked it out! Lua then had her car seat trail, where she had to tolerate being in her car seat for the length of the drive home, 3 hours, and then we finally had a date set! June 16, almost 3 months exactly that we stayed in the NICU. Looking back, I would have stayed there forever if I would have gotten to keep her.
No tubes attached! First time with out the vent!
Some therapy work, she hated this thing!
First time on her tummy! She loved it!
One of her favorite nurses!
When she came back with her trach, we were told to go head and get lunch or whatever we want because she was pretty heavily sedated and would probably sleep for the next 2 hours. Yeah, it was like 20 mins and she started opening her eyes. I told the nurse but she rolled her eyes at me and then I said, look, she's awake! "Oh well I guess she is." Not a favorite nurse of mine...
Anyway, she was a trooper, and she wasn't going to miss a second of her time on earth.
We started learning all the cares and things we would have to do with her. Everyone has secretions, we clear them by coughing, or swallowing... when you have a trach, you need to be suctioned to get the secretions out... SUCTIONED! A catheter down her little tube, quick enough to not stop her from breathing for too long, but not too quick so you miss anything. I felt like I almost died when they showed me what had to be done the first time. There was no way. Noooooo way, I would be able to do this when I took her home. I was sorry to her but, when I saw everything that needed to be done I just came to the terms that we would never leave the hospital!
The next few days I had this amazing nurse who sat down with me and went through a book of all the cares and explained to me how everything worked and that helped so insanely much! I started to feel way more comfortable with everything we had to do.
The next process was to see if she could breathe with out having the vent. If she needed the vent, we would not be able to go home until she was 10lbs because that is what the home vents could support. We really wanted her to be on the trach collar, and the trach collar is tubing that gives humidified air for her trach, since she isnt using her nose to humidify like we do. This was a huge stressful time! We so badly wanted to go home, and she needed to be off the vent all the time for like 2 weeks before she could go home.
We started with 2 hours, and when she was put on it, she acted like nothing even happened to her! She did amazing, she jumped to 4 hours pretty quickly, and she was on her way!!! She blew me away how well she could do with out the vent! Then we hit the 6 hour mark and disaster struck!
A nurse she had off and on during the weekend came in, and she decided to do Lua's trach cares on her own, even though no nurse was suppose to be doing her trach cares because me and my husband requested to do all of them so we could get as much practice as possible! While this nurse was doing the trach cares, she sat Lua up totally and Lua's oxygen dropped! She started struggling and it took them a bit to get her back up. This nurse was claiming that Lua just couldn't handle the trach collar and needed to be on the vent. Up until this point Lua had Never been sat up totally like how she did it. Not even during her therapies. We had been slowly working on it but had not gotten to that position. Now this nurse is running her mouth telling all the doctors that she couldn't take it and they stopped with the trach collar. This incident cost us probably an extra 2 weeks in the NICU all because she was so sure she knew what was best. She told us this is the only way you are ever suppose to do trach cares, and that was 100% wrong! We ended up requesting to not get this nurse again, which was disappointing because before this we really did like her.
After a break for a few days, they decided to go back at it with the trials. She again went super fast through all the hours until she hit 6 again!!! I got a call at 6:30 that she had a fever since about 3am. Again they stopped the trials, she got her first antibiotics, and all tests came back looking good so I guess it was just a random type thing. But now we have almost every doctor saying Lua wasn't going to be able to get off the vent.
Then something magical happened. We got a new doctor! He came in, he questioned why she wasnt doing the 6 hour mark. They were giving him all the reasons and things that happened and he disagreed, he said we don't know if she is not able to do it, or if she was having other issues come up. So he got a new monitor on her, one that monitors her carbon dioxide and it turns out that she was keeping those levels at a good range!
In the mean time, while we worked on getting off the vent, Lua kept improving with her therapies, her legs started straightening out very well! Her little feets were almost perfect! And she started getting water therapy! Where she could move in there! She was the first baby to get to go in the little whirl pool! Then we worked with secretions that liked to bubble out he trach!!!! We debated doing something to help with her secretions, but I don't know, I got the feeling they were lazy with us because we were almost on our way out and ended up doing nothing to help her with them.
And to top everything off, 2 weeks before we were able to go home, Lua had her gtube button changed out and then she started throwing up! I didn't even know she could throw up! But she started doing it. She got to have a trip down to get her belly looked at, which was awesomely nerve wrecking for me! But she did fine, of course she did, she always blew me away with all the things she could tackle.
We had to fight with the trach team over and over to get nursing set up and for them to get a date to let her go home, but we were getting close to going home!!! We got a home nurse, she only lasted 3 weeks though, and we were learning about all our equipment we would go home with. The next step was to have our independent care, which meant staying in a room with her by ourselves, with our own equipment, doing everything alone, and overnight!
It was never wrecking, but it went really well! She did great, she was the best sleeper! Her pulse ox did say she dropped her stats a little bit there, but her hospital one didn't drop, so that was a bit confusing and scary!!! We worked it out! Lua then had her car seat trail, where she had to tolerate being in her car seat for the length of the drive home, 3 hours, and then we finally had a date set! June 16, almost 3 months exactly that we stayed in the NICU. Looking back, I would have stayed there forever if I would have gotten to keep her.
First time seeing my baby with out her breathing tubes
She was really upset with us about something
No tubes attached! First time with out the vent!
Some therapy work, she hated this thing!
First time on her tummy! She loved it!
One of her favorite nurses!
Loneliness
So the NICU series will take a little while to get to, there is so much information that goes into it and everything.
I already can't believe that our due date for baby #3 is in 6 months. It doesn't sound like much when you say 3 months pregnant, but 6 months can really go by fast! So we will see...
Speaking of months, it has been 9 months since Lua has passed away. Funny how I just said 6 months can really fly by, but the last 9 months have really seemed to take forever. The first month after she passed felt like it was an entire year! Lately it seems to be a little more lonely too, which can help slow down the days. It was amazing to have so much support and people comforting you right after a horrific tragedy happens like this, but eventually everyone has to move on and things come up in their own life and supporters have to go back to real world life. Not like I am saying there is no one there for us anymore, but honestly, things die down for people not living in the shoes of someone who is going through this. I can feel a little annoyance of too many pictures posted on facebook, less people will check in with you, and some kind of forget. Also being pregnant people are more interested in the good news, and want to stay away from the bad news. It isn't anyone's fault, and I know when I run into someone who is struggling with something in their life, I never know what to say either. I understand it, where everyone is coming from. I just never knew how hard it was to live this life, and it really does get lonely. Not in the original sense of loneliness, but I think more in the sense of, there is no one else here living it with you.
Wow I wish any of this made sense. It is a good thing not many people read this, other wise I would probably be really embarrassed Ha!
I guess my point of this is, there is a point that you get to, especially after a loss, that people move on a whole lot quicker than you do. Everyone probably knows this, and I think I knew it too, but I didn't expect it to feel like this??
I remember reading the story about Avery and her bucket list, the little baby who was found to have SMA after she was born. I read every blog, I was cheering her on, my first daughter was about 6 months older than her, and I related to it so insanely much! I cried when I heard she passed away, I felt for those parents so much! But as the days go on, I get over it more and more. Now I think about those parents, how hard it had to have been for them, and how they are probably still trying to move past their loss. I had no idea that in a very short 3 years, I would be living their nightmare! The nightmare I was so thankful to not have had to go through with my first baby.
I sorta wish there was more that you could do for parents that go through this, that there was more you could say to them, or offer them. I still don't even know what would make me feel better except to be able to freely talk about my child and have an actual conversation about her and not just me talking about her and people shaking their heads and saying nothing. Oh well, we either have to move on or we are going no where.
In good news, we may be into our new house next weekend. That would be great! So lets hope for that!
I already can't believe that our due date for baby #3 is in 6 months. It doesn't sound like much when you say 3 months pregnant, but 6 months can really go by fast! So we will see...
Speaking of months, it has been 9 months since Lua has passed away. Funny how I just said 6 months can really fly by, but the last 9 months have really seemed to take forever. The first month after she passed felt like it was an entire year! Lately it seems to be a little more lonely too, which can help slow down the days. It was amazing to have so much support and people comforting you right after a horrific tragedy happens like this, but eventually everyone has to move on and things come up in their own life and supporters have to go back to real world life. Not like I am saying there is no one there for us anymore, but honestly, things die down for people not living in the shoes of someone who is going through this. I can feel a little annoyance of too many pictures posted on facebook, less people will check in with you, and some kind of forget. Also being pregnant people are more interested in the good news, and want to stay away from the bad news. It isn't anyone's fault, and I know when I run into someone who is struggling with something in their life, I never know what to say either. I understand it, where everyone is coming from. I just never knew how hard it was to live this life, and it really does get lonely. Not in the original sense of loneliness, but I think more in the sense of, there is no one else here living it with you.
Wow I wish any of this made sense. It is a good thing not many people read this, other wise I would probably be really embarrassed Ha!
I guess my point of this is, there is a point that you get to, especially after a loss, that people move on a whole lot quicker than you do. Everyone probably knows this, and I think I knew it too, but I didn't expect it to feel like this??
I remember reading the story about Avery and her bucket list, the little baby who was found to have SMA after she was born. I read every blog, I was cheering her on, my first daughter was about 6 months older than her, and I related to it so insanely much! I cried when I heard she passed away, I felt for those parents so much! But as the days go on, I get over it more and more. Now I think about those parents, how hard it had to have been for them, and how they are probably still trying to move past their loss. I had no idea that in a very short 3 years, I would be living their nightmare! The nightmare I was so thankful to not have had to go through with my first baby.
I sorta wish there was more that you could do for parents that go through this, that there was more you could say to them, or offer them. I still don't even know what would make me feel better except to be able to freely talk about my child and have an actual conversation about her and not just me talking about her and people shaking their heads and saying nothing. Oh well, we either have to move on or we are going no where.
In good news, we may be into our new house next weekend. That would be great! So lets hope for that!
Monday, July 6, 2015
NICU series part 1
Shortly after we were home with Lua, I thought how it would be such a good idea for someone to write a book on all the nicu stories and being in the nicu. It is a life you cannot comprehend unless you are living in it! The NICU is such a stressful, scary, some times joyous place and you would not believe all the up's and down's there are when you are there. I read a lot of books about how to cope or how to live the NICU life, and I am sure there are books out there about NICU stories, but I was thinking if there were limited books about it I should write what we saw. I don't think I'll ever have time to write a book, or even be able to write a book, yet I still wanted to write down some of the stories we saw go by, especially before all the details leave my memory. They will all be with different names and some details changed a bit since I don't really have permission to write about everyone since I haven't seen them in a long time!
Part one, I will start with the story I know the best, and the one everyone who has read Lua's caring bridge and this blog know the most about, but there may be some things that were never mentioned. Forgive me if any information gets repeated!
Lua. Part 1
If you haven't read her birth story on caring bridge, you can read it here, I won't cover everything I did when I first wrote the story.
http://www.caringbridge.org/visit/luasouza/journal/view/id/53420714a589b4d332437e4d
Lua's labor was not what I expected, I truly believed I would go late with her like I did with May. Surprisingly, though, I was 2 weeks early going into labor. My contractions started around 3 am friday morning, nothing serious and I figured it was indigestion or braxton hicks but as the day went on they got stronger and all the nurses at the hospital were positive we would have a baby on friday evening. She wasn't able to push herself down, and I wasn't getting to 10cm but after a little bit of time on pitocin, waters broke and she was heading her way down! My water seemed to break 2 times and another gush of water out slid Lua landing right on the bed. That was the only second I saw her, this white, gray, blue, jumble of a baby laying on the table before they swept her away. They worked on her and worked on her and worked on her, I thought she was just having some breathing problems and had inhaled too much fluids. No one was really saying everything that was going on, I think because no one really knew what was going on. I had no idea until months later that her heart had slowed waay down and she ended up getting a shot to jump start it. After they were able to get her intubated, my husband had taken a picture of her and that was the only thing I saw of her until 6 hours later when I went to the NICU. My husband told me, something looks weird right? I didn't know, it was a picture, she just came out of the womb, babies always look a little like a mess? Besides the fact that she was very purple and blue and white. I haven't slept since 3am friday morning and she was born saturday at 5:21 am (or something like that) I was exhausted. My husband left to go be with Lua and I had to stay at the hospital. I truly thought there wasn't very much wrong with her, I really thought that her lungs might need a little help because she was 2 weeks early and we may need to be in the NICU for a couple days, but the doctor who delivered her did come and talk to me and tell me he jaw was very small, and very stiff, and if I needed to talk to him to call him any time. I still didn't think things could be that bad, but I didn't see anything that they did with her after they took her to the table.
I was was there at the hospital with my sister, and I was getting things arranged for when I could be discharged. I had just gotten her birth certificate, and we had talked about naming her Lua M Souza, and as I was filling out the birth certificate I got a call from my husband. The doctor at the childrens hospital told him some updates on Lua. She said she had skeletal dysplasia. she was clubbed foot, had a cleft palate, one of her ribs were missing, on the other side she had two fused together. Her one foot was dead and detached and not working. Her organs weren't working, they weren't sure how much damaged was done to her brain, and her heart might not be working either. The doctor told my husband that they will be thinking of taking her off support with in 24 hours and I needed to get there as soon as possible.
I haven't slept in 24 hours, I haven't gotten to see my baby, I just went through labor!!! And now I hear that my baby isn't going to live. I felt like I was hyperventilating. I looked at her name and I knew we couldn't just do Lua M, she had to have something more, so the best I could come up with was Lua March. I felt like it worked well because May Luzia Lua March. Anyway. I walked out to the nurse and told her I needed to be discharged now! My sister came back in and I told her what my husband had said and we needed to get going. So the nurse came in, made me get on a wheel chair and 6 hours after I gave birth, I was discharged from the hospital.
I was able to sleep on the hour drive to the first NIUC Lua went to, and it felt really great, even though I was dying inside. I was terrified of seeing her. They told me all these things that were wrong with her, and as stupid as this sounds (remember I haven't had much sleep yet!) I was so scared that, what if I wouldn't like what I was going to see? How would she look? will it scare me to look at her? I was so worried what would happen when I got there and if I could be a mother to this baby, who according to the doctors was going to pass away with in hours.
We finally got to the NICU, I don't remember much after this, but feeling like I was walking to my own death. Everything was in a fog, the halls, the different floors we went to, I don't even think I washed my hands the first time I went in. They only allowed 4 people at a time in this NICU and when I arrived my parents were already back by her. I briefly saw my husband before heading back to see her. I was so scared, my heart was pounding, you could probably see it through my shirt. I walked up to where she was in the incubator and the second I saw her, I melted for her! My heart hit the floor, my stomach too, I was stuck between trying to sob to pieces and being able to breathe. I couldn't catch my breath, and I couldn't believe that this little beauty was my baby! She was absolutely gorgeous, the prettiest thing I have seen since having May. She was a true angel, and when I saw her I knew there was nothing I wouldn't do to save her. I was NOT letting her go unless she gave up completely. I wish so badly I could have switched places with her right then and there, I wish I could have taken all of her pain and suffering. I was so in love with her, I couldn't even believe it. What was I so worried about?
Shortly after arriving the doctor brought my whole family to a room and told us the same thing my husband had told me while I was at the other hospital. At that moment, I hated that doctor. You can't stand there and tell me my baby is going to die and expect me to like you. I couldn't look at her, and I felt like it was her fault Lua was in the situation she was in. They did give us a room to be able to lay down in, so after the little informational meeting, I went in and slept for a couple of hours.
After waking up and I'm sure I had started pumping already, some of Lua's tests were coming back. Her ultra sound on her heart looked very good, she had a good strong heart. Her brain ultra sound also looked good and very unexciting so they even canceled the other tests they had to look at her brain. Her xrays came back and they located the 'missing rib' the other rib wasn't fused, they thought it was cracked but it wasn't even that. She did have a break in her arm, but her leg was not detached and dead, where she was delivered they took blood from her foot so that is why she was so black and blue there. Later we learned because of her condition of the arthrogryposis and underlying condition, her leg was so floppy because of the contractures and lack of muscle, but she still ended up moving both her leggies!!!
She also didnt have a cleft palate. She had a high palate but it wasn't cleft. All her organs started kicking in too and she gobbled down the breast milk and digested it fully right away. She was making a huge turn around. In fact her lungs were looking great, she was taken off the oscillator with in 24 hours after being put on it.
We needed to go home because we were not expecting to be staying in a NICU and all the problems that came up so on sunday night we went home to get stuff. That was the worst thing in the world to come back to a house that was all prepared for a baby, everything was still laying the way it was when I was laboring, food that I was able to keep down was still laying out, and we had no baby. It hurt so bad to come back to a house that was ready for a baby and have no baby there. I spent all night, pumping, crying, and looking up what could possibly be wrong with our baby. I came across a word called Arthrogryposis, and I thought, hmmm maybe??? the prognosis wasn't terrible, although there was still the statistic of 20%-30% of infants don't make it to one year old. It still seemed some what hopeful.
It was the next day that we were told she doesn't have skeletal dysplasia but her joints were contracted and they gave us the word arthrogryposis. My jaw dropped! I had told my dad and husband and sister about what I read with arthrogryposis and when the doctor said it, I just couldn't believe it. Anyway, she told us we would have to go to milwaukee because they have orthopedics and she will need surgeries for her joints and then she should start moving and things were starting to look up! The doctor was so impressed with Lua, she wanted to extubate her, but because of Lua needed to be looked at she decided to keep her intubated, but she felt pretty confident that Lua could breathe on her own, she was on such little support by this point. It seemed like our first doctor made a total turn around. She told us how Lua was really a miracle! And such a fighter!
Lua was 4 days old when we were transferred to what would become our home for the next 3 months. We went into this believing they had some good answers for us to help her get better quickly. We planned on staying down there for maybe a month! Ha! Lua was transferred by ambulance, me and my husband followed by car. When we got there, Lua had every specialist under the sun come look at her. Then we were brought in. It was like the first day all over again. The geneticist said she has a severe disease that we will be lucky if she lives to be 6 months old. They aren't sure what disease it is yet but we shouldn't even bother looking anything up online. My husband protested a little by telling them how much she has improved. The argued and said that she is only recovering from her birth trauma, but she will never recover from whatever disease it is that she has. She can't even move, she was in the worst situation ever.
We were moved into the Ronald house, where I cried, and cried. My husband was much more optimistic than I was. When we went back to the NICU, I had the best surprise waiting for me! The nurses were setting up for me to be able to hold my baby, for the first time ever! it had been 4 days!!!
I could have held her for forever!!! Except my husband wanted his turn. But it was the best experience in the world! She was so sweet, so adorable. Then later the genetics team returned to tell us the two diseases they were expecting her to have. Spinal muscular atrophy, or myotonic dystrophy. But again, don't go online and look anything up, but just expect her to live for maybe 6 months.
After the first worst day at the NICU, along with the best moment of my life, it was all about test after test after test for her trying to figure out what she had. The day came for her extubation as well... I couldn't watch! When the extubated her she wasn't able to breathe, but then the neonatologist propped up her tongue and she was doing it! she was able to breathe on her own for about an hour. But she wasn't getting better at it and she was also not getting any worse at it. She was a mystery, and keeping her tongue propped up wasn't secure enough to take her home. I should have mentioned earlier, that they have 3 requirements before a baby can leave. They have to be able to breathe on their own, eat on their own... and I think the last was to be gaining weight? She couldn't practice eating because she had the breathing tube in, and she couldn't get the breathing tube out until she can breathe on her own.
Unfortunately, after her failed extubation, we had a conversation about what to do next. She couldn't breathe on her own, all the other options were going out the window to make this possible for her, so we were given 2 options. We either get a trach put in and learn all the cares and do this the rest of her life, or we take everything out and let her go. Let her go. Let her suffocate... My husband was so mad, I knew if these were our two options it wasn't going to be to let her go, or else we would have already done that.
Part 2 coming soon.
Part one, I will start with the story I know the best, and the one everyone who has read Lua's caring bridge and this blog know the most about, but there may be some things that were never mentioned. Forgive me if any information gets repeated!
Lua. Part 1
If you haven't read her birth story on caring bridge, you can read it here, I won't cover everything I did when I first wrote the story.
http://www.caringbridge.org/visit/luasouza/journal/view/id/53420714a589b4d332437e4d
Lua's labor was not what I expected, I truly believed I would go late with her like I did with May. Surprisingly, though, I was 2 weeks early going into labor. My contractions started around 3 am friday morning, nothing serious and I figured it was indigestion or braxton hicks but as the day went on they got stronger and all the nurses at the hospital were positive we would have a baby on friday evening. She wasn't able to push herself down, and I wasn't getting to 10cm but after a little bit of time on pitocin, waters broke and she was heading her way down! My water seemed to break 2 times and another gush of water out slid Lua landing right on the bed. That was the only second I saw her, this white, gray, blue, jumble of a baby laying on the table before they swept her away. They worked on her and worked on her and worked on her, I thought she was just having some breathing problems and had inhaled too much fluids. No one was really saying everything that was going on, I think because no one really knew what was going on. I had no idea until months later that her heart had slowed waay down and she ended up getting a shot to jump start it. After they were able to get her intubated, my husband had taken a picture of her and that was the only thing I saw of her until 6 hours later when I went to the NICU. My husband told me, something looks weird right? I didn't know, it was a picture, she just came out of the womb, babies always look a little like a mess? Besides the fact that she was very purple and blue and white. I haven't slept since 3am friday morning and she was born saturday at 5:21 am (or something like that) I was exhausted. My husband left to go be with Lua and I had to stay at the hospital. I truly thought there wasn't very much wrong with her, I really thought that her lungs might need a little help because she was 2 weeks early and we may need to be in the NICU for a couple days, but the doctor who delivered her did come and talk to me and tell me he jaw was very small, and very stiff, and if I needed to talk to him to call him any time. I still didn't think things could be that bad, but I didn't see anything that they did with her after they took her to the table.
I was was there at the hospital with my sister, and I was getting things arranged for when I could be discharged. I had just gotten her birth certificate, and we had talked about naming her Lua M Souza, and as I was filling out the birth certificate I got a call from my husband. The doctor at the childrens hospital told him some updates on Lua. She said she had skeletal dysplasia. she was clubbed foot, had a cleft palate, one of her ribs were missing, on the other side she had two fused together. Her one foot was dead and detached and not working. Her organs weren't working, they weren't sure how much damaged was done to her brain, and her heart might not be working either. The doctor told my husband that they will be thinking of taking her off support with in 24 hours and I needed to get there as soon as possible.
I haven't slept in 24 hours, I haven't gotten to see my baby, I just went through labor!!! And now I hear that my baby isn't going to live. I felt like I was hyperventilating. I looked at her name and I knew we couldn't just do Lua M, she had to have something more, so the best I could come up with was Lua March. I felt like it worked well because May Luzia Lua March. Anyway. I walked out to the nurse and told her I needed to be discharged now! My sister came back in and I told her what my husband had said and we needed to get going. So the nurse came in, made me get on a wheel chair and 6 hours after I gave birth, I was discharged from the hospital.
I was able to sleep on the hour drive to the first NIUC Lua went to, and it felt really great, even though I was dying inside. I was terrified of seeing her. They told me all these things that were wrong with her, and as stupid as this sounds (remember I haven't had much sleep yet!) I was so scared that, what if I wouldn't like what I was going to see? How would she look? will it scare me to look at her? I was so worried what would happen when I got there and if I could be a mother to this baby, who according to the doctors was going to pass away with in hours.
We finally got to the NICU, I don't remember much after this, but feeling like I was walking to my own death. Everything was in a fog, the halls, the different floors we went to, I don't even think I washed my hands the first time I went in. They only allowed 4 people at a time in this NICU and when I arrived my parents were already back by her. I briefly saw my husband before heading back to see her. I was so scared, my heart was pounding, you could probably see it through my shirt. I walked up to where she was in the incubator and the second I saw her, I melted for her! My heart hit the floor, my stomach too, I was stuck between trying to sob to pieces and being able to breathe. I couldn't catch my breath, and I couldn't believe that this little beauty was my baby! She was absolutely gorgeous, the prettiest thing I have seen since having May. She was a true angel, and when I saw her I knew there was nothing I wouldn't do to save her. I was NOT letting her go unless she gave up completely. I wish so badly I could have switched places with her right then and there, I wish I could have taken all of her pain and suffering. I was so in love with her, I couldn't even believe it. What was I so worried about?
Shortly after arriving the doctor brought my whole family to a room and told us the same thing my husband had told me while I was at the other hospital. At that moment, I hated that doctor. You can't stand there and tell me my baby is going to die and expect me to like you. I couldn't look at her, and I felt like it was her fault Lua was in the situation she was in. They did give us a room to be able to lay down in, so after the little informational meeting, I went in and slept for a couple of hours.
After waking up and I'm sure I had started pumping already, some of Lua's tests were coming back. Her ultra sound on her heart looked very good, she had a good strong heart. Her brain ultra sound also looked good and very unexciting so they even canceled the other tests they had to look at her brain. Her xrays came back and they located the 'missing rib' the other rib wasn't fused, they thought it was cracked but it wasn't even that. She did have a break in her arm, but her leg was not detached and dead, where she was delivered they took blood from her foot so that is why she was so black and blue there. Later we learned because of her condition of the arthrogryposis and underlying condition, her leg was so floppy because of the contractures and lack of muscle, but she still ended up moving both her leggies!!!
She also didnt have a cleft palate. She had a high palate but it wasn't cleft. All her organs started kicking in too and she gobbled down the breast milk and digested it fully right away. She was making a huge turn around. In fact her lungs were looking great, she was taken off the oscillator with in 24 hours after being put on it.
We needed to go home because we were not expecting to be staying in a NICU and all the problems that came up so on sunday night we went home to get stuff. That was the worst thing in the world to come back to a house that was all prepared for a baby, everything was still laying the way it was when I was laboring, food that I was able to keep down was still laying out, and we had no baby. It hurt so bad to come back to a house that was ready for a baby and have no baby there. I spent all night, pumping, crying, and looking up what could possibly be wrong with our baby. I came across a word called Arthrogryposis, and I thought, hmmm maybe??? the prognosis wasn't terrible, although there was still the statistic of 20%-30% of infants don't make it to one year old. It still seemed some what hopeful.
It was the next day that we were told she doesn't have skeletal dysplasia but her joints were contracted and they gave us the word arthrogryposis. My jaw dropped! I had told my dad and husband and sister about what I read with arthrogryposis and when the doctor said it, I just couldn't believe it. Anyway, she told us we would have to go to milwaukee because they have orthopedics and she will need surgeries for her joints and then she should start moving and things were starting to look up! The doctor was so impressed with Lua, she wanted to extubate her, but because of Lua needed to be looked at she decided to keep her intubated, but she felt pretty confident that Lua could breathe on her own, she was on such little support by this point. It seemed like our first doctor made a total turn around. She told us how Lua was really a miracle! And such a fighter!
Lua was 4 days old when we were transferred to what would become our home for the next 3 months. We went into this believing they had some good answers for us to help her get better quickly. We planned on staying down there for maybe a month! Ha! Lua was transferred by ambulance, me and my husband followed by car. When we got there, Lua had every specialist under the sun come look at her. Then we were brought in. It was like the first day all over again. The geneticist said she has a severe disease that we will be lucky if she lives to be 6 months old. They aren't sure what disease it is yet but we shouldn't even bother looking anything up online. My husband protested a little by telling them how much she has improved. The argued and said that she is only recovering from her birth trauma, but she will never recover from whatever disease it is that she has. She can't even move, she was in the worst situation ever.
We were moved into the Ronald house, where I cried, and cried. My husband was much more optimistic than I was. When we went back to the NICU, I had the best surprise waiting for me! The nurses were setting up for me to be able to hold my baby, for the first time ever! it had been 4 days!!!
I could have held her for forever!!! Except my husband wanted his turn. But it was the best experience in the world! She was so sweet, so adorable. Then later the genetics team returned to tell us the two diseases they were expecting her to have. Spinal muscular atrophy, or myotonic dystrophy. But again, don't go online and look anything up, but just expect her to live for maybe 6 months.
After the first worst day at the NICU, along with the best moment of my life, it was all about test after test after test for her trying to figure out what she had. The day came for her extubation as well... I couldn't watch! When the extubated her she wasn't able to breathe, but then the neonatologist propped up her tongue and she was doing it! she was able to breathe on her own for about an hour. But she wasn't getting better at it and she was also not getting any worse at it. She was a mystery, and keeping her tongue propped up wasn't secure enough to take her home. I should have mentioned earlier, that they have 3 requirements before a baby can leave. They have to be able to breathe on their own, eat on their own... and I think the last was to be gaining weight? She couldn't practice eating because she had the breathing tube in, and she couldn't get the breathing tube out until she can breathe on her own.
Unfortunately, after her failed extubation, we had a conversation about what to do next. She couldn't breathe on her own, all the other options were going out the window to make this possible for her, so we were given 2 options. We either get a trach put in and learn all the cares and do this the rest of her life, or we take everything out and let her go. Let her go. Let her suffocate... My husband was so mad, I knew if these were our two options it wasn't going to be to let her go, or else we would have already done that.
Part 2 coming soon.
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