I hate being the debbie downer of the blog world, but wow how september is such a difficult month!
Sometimes there is this thing that goes off that reminds me I feel very terrible. It usually takes me awhile to figure out why that is? Usually it takes looking at a calendar. For some reason, there are certain days or weeks and months, that set off depressed feelings and the end of september is one of the hardest times with the most depressed feelings. Lua got sick after a birthday party we took her to, it wouldn't have mattered if she did go or didnt because May was the one who initially got sick and passed it on so Lua would have gotten sick regardless. But it was at the end of September and then after not fully recovering, October she passed away with out us ever expecting this could happen.
Remember that feeling where you think nothing bad can actually really ever happen to you?
Only takes one time for that feeling to fade away fast! So we actually aren't invincible???
Well last year Sol got sick at the exact same time Lua did. Want to see what a freaked out person looks like?? I probably have some pictures. We were admitted with Sol around the same time that Lua got sick last year. So of course, this year I am pretty freaked out. Although Sol has been showing how tough he is at these sicknesses he has calmed me some. Except, I know how easy it is for him to not be able to fight a cold with out proper support and if anything goes wrong he could easily pass away, I will never make that mistake again to think it is actually hard for someone to die from a cold because it is possible especially if you start adding other factors to the equation. Well, we all ended up with this sinus cold this last week and Sol is still working on trying to get over his. It started out fine but now he is getting congested and when it gets to his lungs it is usually difficult to deal with, so I am still being hopeful that he will bounce back any day here. If he doesn't, I think I will lose my mind, I just cant take this time of year anymore! Last year was really difficult from september to january, I felt like we were admitted every month, and we basically were. If it is possible for us to not get sick and much as we did last year that would really be a big help!
So with all of this and all of my "Ahhhhnessss" (because I have no other words to describe?) I am at my check up this last month and find that I certainly qualify for anxiety medication. I know so hard to believe that I could possibly have anxiety! Where did that come from? Ha, I laugh to not cry :D It just becomes interesting to me what the outcome is of going through traumatic things. Daily our family can battle hard memories, we all go through it so differently too, and it is interesting to see how things that happen to us shape us and mold us into different versions of ourselves. I truly am not going anywhere with any of this so feel free to stop reading at any time, but september is such a sucky time of year i feel it deserved to have my thoughts written down about it. Ha.
Sol gives me hope though. And if he does well the rest of this month, maybe by next year it wont be as hard. He does have a procedure coming up october 6th and if that doesnt go well then october will be DEAD to me. I will never acknowledge october ever again, we will seriously be through. Just a warning october.
He does though. I Love seeing who this little man is becoming. Today he kept trying to kick off his pulse ox prob and then he chuckles about it. Boys are so naughty, even when they have such little movement they find ways to be naught. It is truly the best, and some what refreshing from dealing with all the emotions a girl gives you lol! We recently went to a genetic appointment and in that appointment, something I have not told on my facebook page for sol, or many other people, The neuromuscular doctor has found a drug that could potentially help Sol gain some strength. We will put him on it for a month and see what happens, she said if it is going to work we will see it happen right away. I am not starting this until after his procedure though, so not until october will we try it, but this is something i have been wanting, anything that could even possibly maybe help or maybe not do anything, but it makes me feel like we are trying SOMETHING, you know how hard it is to watch your child be in a body he really wasn't meant to be in? This feels like a little piece of hope and if not this, maybe some day there will be something. Each day I watch him, ready to jump like his sister, or walk like is cousin, or play like the neighbors and each day it breaks me a little more that he wants this and cant do it. It is a hard thing, but he is creative, between the two of us, we find ways to get things done so that is why I say he does give me hope. He is of course my rainbow baby and he is living up to the name every day. Him and his sisters makes me one proud mommy!
Tuesday, September 19, 2017
Thursday, September 7, 2017
nicu awareness month
Wow, I did not realize that I have not written an update since spring break! I knew I havent been in the mood to do so for awhile, but have not realized it has been so long. I was driving to the store today when I started to think about how this month is nicu awareness month, something I haven't typically done much for, but reading some updates from parents that are currently in the nicu with their little ones, got me thinking about our time at the nicu and how traumatic it can be to be in the nicu. I wish I could let everyone see a glimpse of my memories from the nicu, so that people can truly grasp what it is like to have your baby in a nicu. Since I cant, I can only share a few thoughts that will stay with me forever. In honor of nicu awareness.
As many know, we spent time in two (technically 3) different nicus, and I have to say that they were quite different experiences for us. The nicu stay with Sol was easier and less traumatic, for. The. Most. Part. Two incidents made for some traumatic memories, but actually his admissions when he gets sick scares me more than anything that happened in the nicu with him. One thing that made his time in the nicu less painful (we will say) is that we knew what to expect. I knew I needed to be louder and more opinionated this time. His room was also much nicer, bigger, and quieter. So when i think back about Sol being in the nicu, i have so very few sour moments. I miss some things he had while he was there, and now I get to see the silver lining which is getting to have a toddler that didnt just break out of the nicu at 3 months, but has thrived and gotten stronger and grew into this 20 month old that he is. (Saying dada and lala and sooometimes momma) When I think back about our time with Sol there, the hardest parts of our stay was me pumping 20 hours a day! Being up all night and day pumping away. Ok maybe not 20 hours a Day but it sure felt like it. Also, of course staying in a place that isnt your home can be so uncomfortable, along with not being able to see your other child and your husband 4 days out of the week. Those things were so very hard. But every day when I would go in to see Sol, he would be his relaxed self ready to chill with me. I would get many good reports from doctors about him. Everyone loved him! I heard such few negative things while we were there, which was so helpful because i hate getting bad news by myself.
That last part I believe, no bad news with sol, is what made all the difference between Sol and Luas stay in the nicu. When I think back to our stay with Lua, i have such few good memories. We had amazing nurses that i wish so badly we could have also had with Sol, we had a select few great doctors! But there was too much unknown. I mean, Lua was just a ball full of unknown where very few people thought she would survive for very long. Sometimes I still cant believe that the doctor that delivered her (dr sutton) was able to keep her going until help arrived. I truly did not understand what was happening after she was born. Just image, you are pregnant with your second child with what seemed to be a completely normal pregnancy, you go into labor on your own, after many hours your baby is born and then a second after your baby is born, the doctor takes her away and quickly the room starts to fill with people, you cant see anything, cant see your baby, no one will tell you what is going on, oh and you still have to deliver your placenta yet. At one point i believed she was going to die there on the table, but then help arrives and they get her stable and I asked a nurse if she was ok. The nurse says almost nothing just a very small I dont know.
Anyway moving forward...
When we were sent to the childrens nicu, we were under the impression we were going there to have her contractures fixed. Imagine our surprise when we were finally allowed in by Lua we had a team of 8(?) doctors standing around her telling us she is going to die. Utter shock. This is my first memory that goes through my head every time i think about lua being in the nicu. A bunch of doctors, which that alone is tremendously intimidating, standing around our baby telling us she is going to die. They didnt think she would live to 6 months, they probably didn't expect her to leave the nicu in reality. Now, besides that moment... numerous people would come in many days in a row to tell us how severe, weak, and a lot of work lua would be. This is our baby! Our newborn baby and we were expected to just give up on her immediately. This is what I get to remember whenever I think of Lua being a newborn. Never any good news about her. Multiple times being asked if we rather her just let her go. I can't even justify using the word traumatic, there should be a stronger word, but yes so very traumatic. Not to mention all the other things that make staying at a nicu hard, living away from home, having a 2 1/2 year old at the time and trying to balance both being in the nicu and taking care of her. Yes, Lua's nicu stay was much hard than Sols. This brand new world we entered and we had no idea this would ever become our life.
But, both our babies made it out of the nicu. Many times parents don't get to leave the nicu with their babies. Even if we did lose Lua 4 months later, we were able to take her home. What i would give to have had the knowledge we have with Sol with Lua. I know for a fact she would still be here if we knew the things we know now.
I wish i had some amazing words for any new parent in the nicu, but I don't believe there are any such words. No matter how short or long a nicu stay is, you always have the grief of the loss of that perfect birth, leaving the hospital with your baby, or whatever it was that you pictured would happen after you have this sweet baby you longed for. The loss of that is definitely fair to grieve over, but it is certainly worth it to make it through each day and be able to take your baby home. That is the best moment, best feeling ever.
As many know, we spent time in two (technically 3) different nicus, and I have to say that they were quite different experiences for us. The nicu stay with Sol was easier and less traumatic, for. The. Most. Part. Two incidents made for some traumatic memories, but actually his admissions when he gets sick scares me more than anything that happened in the nicu with him. One thing that made his time in the nicu less painful (we will say) is that we knew what to expect. I knew I needed to be louder and more opinionated this time. His room was also much nicer, bigger, and quieter. So when i think back about Sol being in the nicu, i have so very few sour moments. I miss some things he had while he was there, and now I get to see the silver lining which is getting to have a toddler that didnt just break out of the nicu at 3 months, but has thrived and gotten stronger and grew into this 20 month old that he is. (Saying dada and lala and sooometimes momma) When I think back about our time with Sol there, the hardest parts of our stay was me pumping 20 hours a day! Being up all night and day pumping away. Ok maybe not 20 hours a Day but it sure felt like it. Also, of course staying in a place that isnt your home can be so uncomfortable, along with not being able to see your other child and your husband 4 days out of the week. Those things were so very hard. But every day when I would go in to see Sol, he would be his relaxed self ready to chill with me. I would get many good reports from doctors about him. Everyone loved him! I heard such few negative things while we were there, which was so helpful because i hate getting bad news by myself.
That last part I believe, no bad news with sol, is what made all the difference between Sol and Luas stay in the nicu. When I think back to our stay with Lua, i have such few good memories. We had amazing nurses that i wish so badly we could have also had with Sol, we had a select few great doctors! But there was too much unknown. I mean, Lua was just a ball full of unknown where very few people thought she would survive for very long. Sometimes I still cant believe that the doctor that delivered her (dr sutton) was able to keep her going until help arrived. I truly did not understand what was happening after she was born. Just image, you are pregnant with your second child with what seemed to be a completely normal pregnancy, you go into labor on your own, after many hours your baby is born and then a second after your baby is born, the doctor takes her away and quickly the room starts to fill with people, you cant see anything, cant see your baby, no one will tell you what is going on, oh and you still have to deliver your placenta yet. At one point i believed she was going to die there on the table, but then help arrives and they get her stable and I asked a nurse if she was ok. The nurse says almost nothing just a very small I dont know.
Anyway moving forward...
When we were sent to the childrens nicu, we were under the impression we were going there to have her contractures fixed. Imagine our surprise when we were finally allowed in by Lua we had a team of 8(?) doctors standing around her telling us she is going to die. Utter shock. This is my first memory that goes through my head every time i think about lua being in the nicu. A bunch of doctors, which that alone is tremendously intimidating, standing around our baby telling us she is going to die. They didnt think she would live to 6 months, they probably didn't expect her to leave the nicu in reality. Now, besides that moment... numerous people would come in many days in a row to tell us how severe, weak, and a lot of work lua would be. This is our baby! Our newborn baby and we were expected to just give up on her immediately. This is what I get to remember whenever I think of Lua being a newborn. Never any good news about her. Multiple times being asked if we rather her just let her go. I can't even justify using the word traumatic, there should be a stronger word, but yes so very traumatic. Not to mention all the other things that make staying at a nicu hard, living away from home, having a 2 1/2 year old at the time and trying to balance both being in the nicu and taking care of her. Yes, Lua's nicu stay was much hard than Sols. This brand new world we entered and we had no idea this would ever become our life.
But, both our babies made it out of the nicu. Many times parents don't get to leave the nicu with their babies. Even if we did lose Lua 4 months later, we were able to take her home. What i would give to have had the knowledge we have with Sol with Lua. I know for a fact she would still be here if we knew the things we know now.
I wish i had some amazing words for any new parent in the nicu, but I don't believe there are any such words. No matter how short or long a nicu stay is, you always have the grief of the loss of that perfect birth, leaving the hospital with your baby, or whatever it was that you pictured would happen after you have this sweet baby you longed for. The loss of that is definitely fair to grieve over, but it is certainly worth it to make it through each day and be able to take your baby home. That is the best moment, best feeling ever.
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