Tonight we were reminded how delicate our sons life really is. We also learned how it is better to have procedures done that make life more challenging, than to watch our son potentially pass away...
This evening I was holding Sol and he had a large air leak around his breathing tube, more air seemed to be going out of his mouth than down the breathing tube itself. The nurses messed and messed and messed with it but it wouldn't go away. His numbers looked really good so they weren't really worried. Later when he got back to bed, he still had a terrible leak but they decided since his oxygen levels looked good they would leave it. Daddy and I were talking and looking at him because he was super awake!!! He had some secretions in his mouth and when I pulled them out, a huge plug of secretions came out and his leak went to 100%, at that point everything went down hill....the nurse came in and I'm really not sure what she was doing but she just kept frantically suctioning his mouth out while air was just blowing out his mouth. He then started gagging on his tube. They called in respiratory therapist, which did nothing from what I could see, where at that point the neonatology nurse practitioners came in. He still was maintaining his oxygen levels but he was gagging hard on that tube and started throwing up. I had to leave at this point. I am so sick of watching my babies go through this type of stuff I just literally can't take it anymore. My husband kept me inform, and while the plan was to get an xray and see where the breathing tube was, xray didn't make it in time and the tube came out. They attempted to intubate him but 3 different people failed. They finally got anesthesiologist in there and on his first try he got the tube in.
Nothing is worse than to go back and see your baby with loss of color, cold, and upset. I can't handle these things anymore. Life is truly unfair, not to me, but to my babies. They never did anything to deserve to have these things happen to them. He deserves so much better, he deserves a stronger parent because I am too broken to handle situations like this anymore. And with the whole ordeal, we decided it is important we get the trach as soon as possible, it is just too hard with this tube and if people aren't going to be careful enough to not move it out of place, then we have to have an easier airway, I dont want to see this happen again. I worry he might be hard to get the trach into as well, but at least it is a shorter tube, lower in his airway, than the breathing tube is.
Thiago, (daddy) stayed at the hospital with Sol overnight, we just didn't feel safe to leave him there alone. Our nurse is a little tactless that we have this evening, nothing against her, but I am certain she doesn't like us very much and I wouldn't trust her to call me if anything were to happen. Last update I heard was that he was doing better, he was upset and probably very sore feeling from them trying to get that tube down his throat. I think he ended up getting some pain medication for that, so I hope he was able to rest more comfortably.
I wish I was stronger to handle these situations, but something like this is just too close to the morning we lost Lua and I dont want to watch another child pass away. Unfortunately, when your baby has a problem with the airway, the possibility of losing a child will always be higher than normal. I have grown to hate that phrase soooo much that says you only get what you can handle. Sometimes you get a whole lot more than you could ever handle, you aren't given a choice as to if you can or can't handle it because you have to do it! I'm not the parent I was before I lost Lua. I knew I was weaker than before and at this point I have confirmation with all that happened tonight and i couldn't even stay there for him, I'm disappointed with myself and the fact I have such little strength compared to before. I'm now terrified to go home with him, with or with out a trach! His life is so fragile and I dont want to be the reason we lose him or something bad happens to him. It is simply not fair. He shouldn't have to go through this.
Tuesday, January 5, 2016
Sunday, January 3, 2016
small updates
The last few days have been pretty laid back. With the holiday weekend and many doctors being off, we haven't had many disturbances and it has been nice to just get to hold him and hang out! Tomorrow things will start up again, so I'm hoping we wont have an insanely stressful week. I know he will start therapies this week and also have an eye exam. Other wise the plan is to try to wean him down on his vent settings and wait until he gets this fluid off his lung and do a trial extubation. This will be hard because it has to be done in the ER and all the right people need to be there because of him being hard to intubate so we aren't sure how this will work exactly. It still seems that we will really only get to go home with him having the trach. It will just be safer and probably easier or what will give him the best chances, but we are hoping for a miracle still.
His, and luas, condition is still a very big unknown that they are trying to figure out, but no tests have been started yet. I wonder if they will figure it out. The thought is it still might be x-linked sma since they fit some of the characteristics but it usually doesn't effect girls so doesn't explain why lua got it. Could potentially be a myopathy but nothing for sure.
I do absolutely love our pulmonary doctor, she is but the best and has been amazing to us. She suggested to the nurses that they find ways to sooth him besides giving him medication and last night our night nurse found a vibrating toy, stuck it under his butt and he loved it... So first 24 hours he has gone in days with no medicine being administered. Turns out he is just acting like a baby that needs some more comfort measures than anything else. It is so nice to have a doctor that is a specialist in this field of neuromuscular diseases, and the fact that she will give us the tools we need this time instead of us fighting to get anything for lua, which hopefully can give us more time and maybe hopefully more improvement out of Sol. We will see, but I for sure dont regret coming to Madison at all so far! I do regret going to the WalMart here though... I'm sure actual crimes have happened in that store before!
Mr. Sol has a much better suck than lua had, not sure if it is good enough but better than hers... It was pretty cute.. This evening he was awake for some time, but he started to get ever so heavy eyed... I have him a nuk and he just went to town and his eyes started to get heavier and heavier but then he would start sucking on that nuk and wake back up... So unfortunately I had to take the nuk from him and in like 3 seconds he was out cold! Resting very peacefully... Reminds me of something normal babies do and those are good moments to have every now and then!
His, and luas, condition is still a very big unknown that they are trying to figure out, but no tests have been started yet. I wonder if they will figure it out. The thought is it still might be x-linked sma since they fit some of the characteristics but it usually doesn't effect girls so doesn't explain why lua got it. Could potentially be a myopathy but nothing for sure.
I do absolutely love our pulmonary doctor, she is but the best and has been amazing to us. She suggested to the nurses that they find ways to sooth him besides giving him medication and last night our night nurse found a vibrating toy, stuck it under his butt and he loved it... So first 24 hours he has gone in days with no medicine being administered. Turns out he is just acting like a baby that needs some more comfort measures than anything else. It is so nice to have a doctor that is a specialist in this field of neuromuscular diseases, and the fact that she will give us the tools we need this time instead of us fighting to get anything for lua, which hopefully can give us more time and maybe hopefully more improvement out of Sol. We will see, but I for sure dont regret coming to Madison at all so far! I do regret going to the WalMart here though... I'm sure actual crimes have happened in that store before!
Mr. Sol has a much better suck than lua had, not sure if it is good enough but better than hers... It was pretty cute.. This evening he was awake for some time, but he started to get ever so heavy eyed... I have him a nuk and he just went to town and his eyes started to get heavier and heavier but then he would start sucking on that nuk and wake back up... So unfortunately I had to take the nuk from him and in like 3 seconds he was out cold! Resting very peacefully... Reminds me of something normal babies do and those are good moments to have every now and then!
Friday, January 1, 2016
Happy New Year
2016 has not started in any way I would have pictured it to start! My due date was Jan. 9th, my dads birthday and the day my grandpa died. I was hoping to have Sol on Jan. 9, but it wasn't meant to be. I mean the second we gave him an eviction date, he decided to pick his very own day! Although we knew he had the condition Lua had, we knew the new year would be similar to this, I still never pictured it. But he has already passed the days they gave him since they told us if we didn't have the exit procedure, he most likely wouldn't be intubated and would pass away at birth. Today he is 8 days old. He has already brought in a new year with us, so he is crossing things off his to do list with speed. It was a very special time to be able to spend the evening with him in his room, I held him while the new years eve ball dropped, and he got kisses from all of us at the stroke of midnight. I would have wished we could have done this not in the hospital but at least we had time with him.
I'm not sure what this new year will bring... I'm not sure if we will have a 1 year old next year, I guess I'm not promised to be here another year myself, or any of us. I dont know how long we will be in Madison, how we will be able to handle another trach, how may will adjust to being in school full time... So many unknowns for this year, and truthfully it pretty much scares me! It is kind of funny, thiago asked me the other day that if my sims were living our life, if I would quit the game and start a new one. At first I was think for sure!!! But then I thought about it and decided, no way I would, I want to see what would happen.. Besides Sims are not actually my life so it doesn't effect me any! If only that was actually true for me. The thing of it is, with Lua I believed full heartily that she would walk, talk, sit up, hold her head up, everything a normal kid can do, it would just take her longer. I feel like that blinded me from seeing how weak she was. But that kept me stronger. Knowing I just had to work with her and wait for the day she would reach these goals, kept me centered whenever doctors would say, wow she's so weak, wow she will be so much work, wow she will never get that trach out. I would choke back the emotions and say screw them, she will do what she wants...... But, she died. And now Sol is here and looks just like her. The doctors say the same things and it hurts a lot more this time and I'm no longer able to push it in the back of my mind and say, screw it, he will do what he wants.. Because that method got me no where.
Their condition is such a huge mystery, when we feel like we sort of know what it is, something is different and goes against the name of the condition. The pulmonary doctor that specializes in sma babies said he is weaker than sma babies... What is weaker than sma babies? My kids apparently. The diagnosis of x-linked sma is thrown out there for them, this has only been seen in 4??? Babies or some ridiculously low number like that. Life span being 2 years, and lungs being majorly effected from weakness. But we have no proof of this yet and regardless we are working with an amazing pulmonologist. She will give us all the tools we need to maximize Sols quality of life. Something I asked for with lua, a cough assist and was denied, Sol has already started getting it. This helps him to cough out secretions and break things up better than just suctioning and suctioning. The doctor wouldn't let us leave with out a vent, something lua really should have had for over night to give her a break to rest and restore strength. This doctor is truly amazing, she literally broke me down crying to her. I've never felt like such a baby in my life, sitting there crying to a doctor! She was kind though and understanding, she told me that I'm still grieving from our loss and having to go through everything again is a lot to go through and she understood. I know so much more this time, I can't help but wonder how long we will get this time around. I know people expect families who go through hard times to be ubber positive and blessed for every trial they receive, but that is sometimes impossible to do and I wish people didn't expect that. I wish I wasn't asked, how is everything? Because I dont know how it is going, I'm very sad with what is happening, I dont see a reason for this to be happening again, so I'm not going to act as if everything is great and positive over the situation. I know this is dark and no one wants to hear or read it, but it is the truth, not everyone has the fairy tale life or the picture perfect family.
I think I bummed everyone out enough for now... But there is still one thing I do really believe.... When I was pregnant with lua, things felt like they were going so well, I actually asked myself, I wonder what the next difficult issue will be for us. Well now I know. But thiago said the other day, we have to be due for a miracle by now. I really believe he is right. I no longer wonder what the next hard thing will be in our life but what will be the miracle that is coming up, we are in so much need for a miracle.
I'm not sure what this new year will bring... I'm not sure if we will have a 1 year old next year, I guess I'm not promised to be here another year myself, or any of us. I dont know how long we will be in Madison, how we will be able to handle another trach, how may will adjust to being in school full time... So many unknowns for this year, and truthfully it pretty much scares me! It is kind of funny, thiago asked me the other day that if my sims were living our life, if I would quit the game and start a new one. At first I was think for sure!!! But then I thought about it and decided, no way I would, I want to see what would happen.. Besides Sims are not actually my life so it doesn't effect me any! If only that was actually true for me. The thing of it is, with Lua I believed full heartily that she would walk, talk, sit up, hold her head up, everything a normal kid can do, it would just take her longer. I feel like that blinded me from seeing how weak she was. But that kept me stronger. Knowing I just had to work with her and wait for the day she would reach these goals, kept me centered whenever doctors would say, wow she's so weak, wow she will be so much work, wow she will never get that trach out. I would choke back the emotions and say screw them, she will do what she wants...... But, she died. And now Sol is here and looks just like her. The doctors say the same things and it hurts a lot more this time and I'm no longer able to push it in the back of my mind and say, screw it, he will do what he wants.. Because that method got me no where.
Their condition is such a huge mystery, when we feel like we sort of know what it is, something is different and goes against the name of the condition. The pulmonary doctor that specializes in sma babies said he is weaker than sma babies... What is weaker than sma babies? My kids apparently. The diagnosis of x-linked sma is thrown out there for them, this has only been seen in 4??? Babies or some ridiculously low number like that. Life span being 2 years, and lungs being majorly effected from weakness. But we have no proof of this yet and regardless we are working with an amazing pulmonologist. She will give us all the tools we need to maximize Sols quality of life. Something I asked for with lua, a cough assist and was denied, Sol has already started getting it. This helps him to cough out secretions and break things up better than just suctioning and suctioning. The doctor wouldn't let us leave with out a vent, something lua really should have had for over night to give her a break to rest and restore strength. This doctor is truly amazing, she literally broke me down crying to her. I've never felt like such a baby in my life, sitting there crying to a doctor! She was kind though and understanding, she told me that I'm still grieving from our loss and having to go through everything again is a lot to go through and she understood. I know so much more this time, I can't help but wonder how long we will get this time around. I know people expect families who go through hard times to be ubber positive and blessed for every trial they receive, but that is sometimes impossible to do and I wish people didn't expect that. I wish I wasn't asked, how is everything? Because I dont know how it is going, I'm very sad with what is happening, I dont see a reason for this to be happening again, so I'm not going to act as if everything is great and positive over the situation. I know this is dark and no one wants to hear or read it, but it is the truth, not everyone has the fairy tale life or the picture perfect family.
I think I bummed everyone out enough for now... But there is still one thing I do really believe.... When I was pregnant with lua, things felt like they were going so well, I actually asked myself, I wonder what the next difficult issue will be for us. Well now I know. But thiago said the other day, we have to be due for a miracle by now. I really believe he is right. I no longer wonder what the next hard thing will be in our life but what will be the miracle that is coming up, we are in so much need for a miracle.
Wednesday, December 30, 2015
loooong day....
Sol arrived safely to Madison hospital, we followed the ambulance the way there. I could have had a ride in the ambulance but I would have had to sit in the front and wouldn't really be able to see sol or anything so I decided to go with the family so it wouldn't be so lonely. I was really scared something would happen anyway and just didn't think I could handle it. But nothing happened, he did great.
We did arrive later in the day in Madison so many of the specialist didn't come to really look at him, just the few normal doctors, neonatologist, respiratory therapist, nurses, that was about it, and they started running a few tests but not many. Today was his big day of meeting specialist after specialist after specialist..... Poor baby... It is so hard to watch so many people pick and poke at him all day long. He is such a trooper for doing as well as he did. He hasn't had any morphine either since Neenah, some Tylenol to get through all the moving and people picking on him, but he has done well.
After everyone was done messing with him, he had ultrasounds done on his head, an echo done, ultrasound on the rest of his body, xrays, physical therapist looked at him, Ortho looked at him, neuromuscular Dr wasted our time looking at him just so she could tell us there is nothing she can do, and genetics! We saw social worker, lactation consultant, and a dietitian because I'm refusing fortifying his breastmilk... They started early with that this time so I wasn't very prepared. After allllll of that, we finally were able to hold him!!!! What a trooper! He was such a nice little bundle and fits so well in your arms. He is such a snuggle bug, I can't wait to snuggle him at home! Both me and daddy got to hold him and he did very well.. And may cried the whole time because it isn't fair that we get to hold him and she can't.... Uuhh kids... I wish I could put pictures up of us holding him but my phone wont let me, ill have to add them later.
So it has been an exhausting day for all of us! Going through all his issues... They said he has fused ribs, they said the same about lua but in the end she didn't, I'm not going to take them too seriously on that. But his brain ultrasound looked good, nothing abnormal. His heart looked good, fluid on his lungs, which we know about, he is still working on clearing that out. His broken arm is healing very nicely. And I had an interesting talk with genetics. He agrees with me that our kiddos dont fit limb girdle muscular dystrophy, they are of course much more severe. I was able to answer a lot of his questions to give him a good direction on where to go from here for diagnosing. He actually told me he was surprised, I gave him so much more information than he usually can get from parents. I guess I have been studying this for a long enough time now.
His thoughts, which I agree on, is that the condition would probably be more of the plectin myopathy. He said looking at sol, and be the same for lua, they had little muscle over all develop. They have muscle but little amount. A myopathy is when the fibers of the muscle didn't form together correctly like they should. So although they are severe, they, well Sol, shouldn't be losing muscle, he will just have to do therapy to develop the muscle he has to its max potential, whatever that may be. And we have learned that colds and sicknesses are very hard for these kids so we will always struggle with that. His heart and lungs will be watched carefully and his lungs will mostly be effected with all of this. But! We will be meeting with the best pulmonary doctor in the state for sure, maybe even the best in the country! And she will guide us and help us decide what will be best for Sol. I seriously can't wait to meet her, we had the worst pulmonary Dr. For lua so I'm hoping this is the game changer, the reason I wanted Madison was for this doctor, and we will be getting to meet her soon!
although this really isn't great news on the diagnosis, I'm glad his muscles wont be wasting away, and the geneticist said he expects Sol to gain more movement with the therapies, like Lua did. His feet are in good shape, not clubbed like they originally thought, but I missed the physical therapist so I didn't hear what they had to say about him. Anyway I am anxious to see what this little boy will be able to accomplish. He amazes me every day.
We did arrive later in the day in Madison so many of the specialist didn't come to really look at him, just the few normal doctors, neonatologist, respiratory therapist, nurses, that was about it, and they started running a few tests but not many. Today was his big day of meeting specialist after specialist after specialist..... Poor baby... It is so hard to watch so many people pick and poke at him all day long. He is such a trooper for doing as well as he did. He hasn't had any morphine either since Neenah, some Tylenol to get through all the moving and people picking on him, but he has done well.
After everyone was done messing with him, he had ultrasounds done on his head, an echo done, ultrasound on the rest of his body, xrays, physical therapist looked at him, Ortho looked at him, neuromuscular Dr wasted our time looking at him just so she could tell us there is nothing she can do, and genetics! We saw social worker, lactation consultant, and a dietitian because I'm refusing fortifying his breastmilk... They started early with that this time so I wasn't very prepared. After allllll of that, we finally were able to hold him!!!! What a trooper! He was such a nice little bundle and fits so well in your arms. He is such a snuggle bug, I can't wait to snuggle him at home! Both me and daddy got to hold him and he did very well.. And may cried the whole time because it isn't fair that we get to hold him and she can't.... Uuhh kids... I wish I could put pictures up of us holding him but my phone wont let me, ill have to add them later.
So it has been an exhausting day for all of us! Going through all his issues... They said he has fused ribs, they said the same about lua but in the end she didn't, I'm not going to take them too seriously on that. But his brain ultrasound looked good, nothing abnormal. His heart looked good, fluid on his lungs, which we know about, he is still working on clearing that out. His broken arm is healing very nicely. And I had an interesting talk with genetics. He agrees with me that our kiddos dont fit limb girdle muscular dystrophy, they are of course much more severe. I was able to answer a lot of his questions to give him a good direction on where to go from here for diagnosing. He actually told me he was surprised, I gave him so much more information than he usually can get from parents. I guess I have been studying this for a long enough time now.
His thoughts, which I agree on, is that the condition would probably be more of the plectin myopathy. He said looking at sol, and be the same for lua, they had little muscle over all develop. They have muscle but little amount. A myopathy is when the fibers of the muscle didn't form together correctly like they should. So although they are severe, they, well Sol, shouldn't be losing muscle, he will just have to do therapy to develop the muscle he has to its max potential, whatever that may be. And we have learned that colds and sicknesses are very hard for these kids so we will always struggle with that. His heart and lungs will be watched carefully and his lungs will mostly be effected with all of this. But! We will be meeting with the best pulmonary doctor in the state for sure, maybe even the best in the country! And she will guide us and help us decide what will be best for Sol. I seriously can't wait to meet her, we had the worst pulmonary Dr. For lua so I'm hoping this is the game changer, the reason I wanted Madison was for this doctor, and we will be getting to meet her soon!
although this really isn't great news on the diagnosis, I'm glad his muscles wont be wasting away, and the geneticist said he expects Sol to gain more movement with the therapies, like Lua did. His feet are in good shape, not clubbed like they originally thought, but I missed the physical therapist so I didn't hear what they had to say about him. Anyway I am anxious to see what this little boy will be able to accomplish. He amazes me every day.
Tuesday, December 29, 2015
moving day
I really haven't been in the mood to make many updates, I haven't had time, or a chance to get to my laptop which I prefer because it really sucks typing on my phone! Also not very much has been going on.
I was discharged from the hospital Dec 26th, 2 days after having Sol. We had our Christmas in the hospital room and then we were able to give Sol his presents too! Anyway, I'm very uncomfortable in hospital beds so since everything was going well with me I decided to go ahead and go home. We are close enough to Neenah to get to the NICU, and we knew we would be transferring to Madison soon, so I wanted to go home and pack and clean up before we leave and not know when we will return.
So that's what we did. I was not prepared for the pain you have after a csection though... I keep trying to act like it was just a vaginal birth and I can get up and go as I please, but really has not been working out.
Sol had been doing fine. He is intubated, on and off small amounts of oxygen, lower vent settings, but some of his lung did collapse. Probably because after his arm was broken from them trying to put in a pic line (or IV), he needed to be put on his other side to help the discomfort of his arm. Poor baby was so sore whenever you would touch his arm, I knew something wasn't right. They tried to tell us it was from birth but we saw xrays that were taken a few hours before the pic line was attempted and there was no break.. After they attempted, break, so seems pretty obvious it happened at that time. The neo. Came to me yesterday and said he has fragile bones.. I did correct her and say, since everyone is comparing him to lua, she did not have fragile bones so with out a test being done I wouldn't be so sure that is true. She said that is the only explanation because the nurses put in the lines all the time and they have never broken a babies arm, even in 26 week old babies..... Later she came back to say they were going to test his bone density and should have results today. I haven't heard results yet... But with how badly they want to disprove they caused it, makes me want to look into pressing charges or something, they have become very admit that there is no way this is their fault..... Which this has been a very big set back for us because he was then put on morphine for the pain and now that he had it once, that is a go to thing for him whenever he is in discomfort instead of Tylenol which I have requested over the morphine numerous times. Just a mess... I did spend the day with him yesterday, and he certainly can get in a lot of discomfort. He is disliking his breathing tube, pushing on it with his tongue and creating a ton of secretions in his mouth, which makes him uncomfortable which makes him cry, which makes more secretions... And it goes on! Uuhhhh nothing breaks my heart more than not being able to comfort him. He demanded, I'm serious... Demanded.... Qtip with breastmilk on it... If I took it away he would cup his little tongue and just crrrryyy!!! We had about 3 hours straight of fussing. So I did see why the nurses jumped to morphine, but his crying is good in my opinion.. Just annoying.
today we should be heading to Madison..we have been warned over and over that if his breathing tube comes out during the trip they can not guarantee that he will survive the ride. I personally think he has become easier to intubate so he may surprise them... But I'm insanely worried about the drive for him. I'm hoping they may allow me to go with him incase something were to happen... We will see.
I was discharged from the hospital Dec 26th, 2 days after having Sol. We had our Christmas in the hospital room and then we were able to give Sol his presents too! Anyway, I'm very uncomfortable in hospital beds so since everything was going well with me I decided to go ahead and go home. We are close enough to Neenah to get to the NICU, and we knew we would be transferring to Madison soon, so I wanted to go home and pack and clean up before we leave and not know when we will return.
So that's what we did. I was not prepared for the pain you have after a csection though... I keep trying to act like it was just a vaginal birth and I can get up and go as I please, but really has not been working out.
Sol had been doing fine. He is intubated, on and off small amounts of oxygen, lower vent settings, but some of his lung did collapse. Probably because after his arm was broken from them trying to put in a pic line (or IV), he needed to be put on his other side to help the discomfort of his arm. Poor baby was so sore whenever you would touch his arm, I knew something wasn't right. They tried to tell us it was from birth but we saw xrays that were taken a few hours before the pic line was attempted and there was no break.. After they attempted, break, so seems pretty obvious it happened at that time. The neo. Came to me yesterday and said he has fragile bones.. I did correct her and say, since everyone is comparing him to lua, she did not have fragile bones so with out a test being done I wouldn't be so sure that is true. She said that is the only explanation because the nurses put in the lines all the time and they have never broken a babies arm, even in 26 week old babies..... Later she came back to say they were going to test his bone density and should have results today. I haven't heard results yet... But with how badly they want to disprove they caused it, makes me want to look into pressing charges or something, they have become very admit that there is no way this is their fault..... Which this has been a very big set back for us because he was then put on morphine for the pain and now that he had it once, that is a go to thing for him whenever he is in discomfort instead of Tylenol which I have requested over the morphine numerous times. Just a mess... I did spend the day with him yesterday, and he certainly can get in a lot of discomfort. He is disliking his breathing tube, pushing on it with his tongue and creating a ton of secretions in his mouth, which makes him uncomfortable which makes him cry, which makes more secretions... And it goes on! Uuhhhh nothing breaks my heart more than not being able to comfort him. He demanded, I'm serious... Demanded.... Qtip with breastmilk on it... If I took it away he would cup his little tongue and just crrrryyy!!! We had about 3 hours straight of fussing. So I did see why the nurses jumped to morphine, but his crying is good in my opinion.. Just annoying.
today we should be heading to Madison..we have been warned over and over that if his breathing tube comes out during the trip they can not guarantee that he will survive the ride. I personally think he has become easier to intubate so he may surprise them... But I'm insanely worried about the drive for him. I'm hoping they may allow me to go with him incase something were to happen... We will see.
Sunday, December 27, 2015
Christmas Eve Baby
Well, Mr. Sol decided that he wanted to open his gifts for christmas, his gifts that were not even that impressive! So... he ended up being born on Christmas eve morning.
At 2:30 that morning, I woke up feeling the need to use the bathroom and when I got there I realized my water had broke, or I seriously peed myself, maybe my bladder exploded? after I stood up, though, more water kept breaking, so I knew this was it. I woke up my husband and told him my water had broken but he wasn't so sure it was actually my water.... men.....
I was so so so nervous, because with the girls, when my water broke they came out VERY quickly after that! I was so scared we were not going to make it to the hospital in time, but I wasn't having many contractions. We headed right for Neenah and made it in time. Started to have some contractions but not too bad or strong or frequent. They started setting up for my csection. I arrived there about 3am and they started to prep me for csection at 6:30 am. My parents had arrived around 5am to help us with May.
They took me back and did all that fun stuff they do to prep for csection... yikes... and after they got the spinal in, I started throwing up, uuuhh... but I felt so much better after that. I was so extremely nervous there was no way I could hold back, but after I threw up I was good for the rest of the csection. Wow is a csection different than a vaginal birth... I know I am too weak to ever do that again! I do remember looking up at my husband and telling him.... for Christmas, I bought you the walking dead comic books......... I just wanted him to know in case of anything.
Soon they said, it wont be long now, and I heard the doctor say, "Happy Birthday baby boy!" and the most wonderful sound, baby cries!!! He cried and cried and cried, it was softer but it was cry after cry! And he was stable! I thought maybe.. maybe he wouldnt need to be intubated. But it wasn't long and he was needing the support. He tolerated everything so well. He didn't have much trauma at all except the normal being pulled out of the belly trauma. They tried to intubate and it failed, they tried a few more times and it was not successful. We had this awesome anesthesiologist, who was so good to me and kept encouraging me when he could see I was really scared. Anyway he jumped in there with a special scope so he could see where the tube needed to go and success! He got it in! Everyone was celebrating! Then the neonatologsit thought the tube was in too deep and pulled and it came out again............... but we got the same guy back in there and the second time it took him a lot longer to get it in but it came in! I was taken out shortly after that so I could start my process of puking for the next 7 hours. But hubby stayed with baby as they got him all settled in. He is so identical to Lua. He didn't suffer as much as she did so he became stable pretty quickly and he has been pretty comfortable. It took me until later that evening before I was well enough to be able to go see him and then I couldn't stay very long before getting sick again.
But he had been doing good, no complaints and for the most part he was being left alone. Until yesterday morning. They were trying to get this line they needed for extra nutrition, not 100% needed. And they ended up breaking his arm. Now he needs morphine, which he doesn't need to be getting! And I feel like this is just a huge set back. I am so worried for him, and how they will handle him from here on out. I really don't want any more set backs, I am just terrified. He is starting out somewhat stronger than Lua, and maybe if we can stay on this path we can have a different outcome. I don't want to lose my baby...it is just difficult.
The up side is he is getting to full feeds pretty quickly here! So hopefully we can fatten him up some and this breastmilk will really help him out!
Anyway this is written very poorly, I am still in a bit of pain, and have too many thoughts going on right now and worries, so hopefully I can make better updates later on. But for now, here is our baby!
At 2:30 that morning, I woke up feeling the need to use the bathroom and when I got there I realized my water had broke, or I seriously peed myself, maybe my bladder exploded? after I stood up, though, more water kept breaking, so I knew this was it. I woke up my husband and told him my water had broken but he wasn't so sure it was actually my water.... men.....
I was so so so nervous, because with the girls, when my water broke they came out VERY quickly after that! I was so scared we were not going to make it to the hospital in time, but I wasn't having many contractions. We headed right for Neenah and made it in time. Started to have some contractions but not too bad or strong or frequent. They started setting up for my csection. I arrived there about 3am and they started to prep me for csection at 6:30 am. My parents had arrived around 5am to help us with May.
They took me back and did all that fun stuff they do to prep for csection... yikes... and after they got the spinal in, I started throwing up, uuuhh... but I felt so much better after that. I was so extremely nervous there was no way I could hold back, but after I threw up I was good for the rest of the csection. Wow is a csection different than a vaginal birth... I know I am too weak to ever do that again! I do remember looking up at my husband and telling him.... for Christmas, I bought you the walking dead comic books......... I just wanted him to know in case of anything.
Soon they said, it wont be long now, and I heard the doctor say, "Happy Birthday baby boy!" and the most wonderful sound, baby cries!!! He cried and cried and cried, it was softer but it was cry after cry! And he was stable! I thought maybe.. maybe he wouldnt need to be intubated. But it wasn't long and he was needing the support. He tolerated everything so well. He didn't have much trauma at all except the normal being pulled out of the belly trauma. They tried to intubate and it failed, they tried a few more times and it was not successful. We had this awesome anesthesiologist, who was so good to me and kept encouraging me when he could see I was really scared. Anyway he jumped in there with a special scope so he could see where the tube needed to go and success! He got it in! Everyone was celebrating! Then the neonatologsit thought the tube was in too deep and pulled and it came out again............... but we got the same guy back in there and the second time it took him a lot longer to get it in but it came in! I was taken out shortly after that so I could start my process of puking for the next 7 hours. But hubby stayed with baby as they got him all settled in. He is so identical to Lua. He didn't suffer as much as she did so he became stable pretty quickly and he has been pretty comfortable. It took me until later that evening before I was well enough to be able to go see him and then I couldn't stay very long before getting sick again.
But he had been doing good, no complaints and for the most part he was being left alone. Until yesterday morning. They were trying to get this line they needed for extra nutrition, not 100% needed. And they ended up breaking his arm. Now he needs morphine, which he doesn't need to be getting! And I feel like this is just a huge set back. I am so worried for him, and how they will handle him from here on out. I really don't want any more set backs, I am just terrified. He is starting out somewhat stronger than Lua, and maybe if we can stay on this path we can have a different outcome. I don't want to lose my baby...it is just difficult.
The up side is he is getting to full feeds pretty quickly here! So hopefully we can fatten him up some and this breastmilk will really help him out!
Anyway this is written very poorly, I am still in a bit of pain, and have too many thoughts going on right now and worries, so hopefully I can make better updates later on. But for now, here is our baby!
Wednesday, December 23, 2015
year in review
We have made a decision on what we will do. We decided to stay with our more local hospital that has the childrens hospital attached to it and do the csection on December 28th. I don't know if this is the best decision, the right decision, if we will regret this decision or what.. but it is the decision I feel the most comfortable with, so we will stick with it and go with it. We will meet with the doctors of the NICU tomorrow and go through everything. I'm hoping they don't change their mind and tell us that we can't go there in the end, because that will become a very awkward conversation with the Madison hospital after I called and cancelled everything this morning.
So I am on pins and needles right now. In just a few days we will know, finally have answers, and see what our future will become. I had been so excited for Christmas but now with the csection date moved to december 28th, I am just terrified, once Christmas is over this little baby will be coming out. It could or will be a very bitter sweet situation. If he comes out doing pretty good or breathing on his own or maybe just being able to eat on his own, or maybe even moving more than Lua did, we could be in a very good situation. If he comes out and they can't intubate and the worst happens, then it will be a very sad and difficult day and right after Christmas to top it off. In that case I would have wished I could have kept him inside for as long as possible. I do not know what to expect, at all! When I was pregnant with Lua and going into labor I assumed it would be so much like how it was with May, and it was sooo different. First I was induced with May, but I got to end up holding her and having this amazing healthy baby. Lua was a much different case. I am thinking I can just assume that this time this baby's birth will be very similar to Lua's but it will be different already because I am having a csection, which I am terrified for! Anyway, that alone will make the delivery much different, so I really have no clue what to expect to happen with this baby. One moment at a time for the next few days.
I can't really believe it is almost the end of the year already... almost doesn't seem possible! As I go through my pictures and see all the things that happened this year, it could almost be 2 years into one. We were mostly still trying to recover from losing Lua, and it seems like our lives went crazy.
In January my dog was put down after he had gotten pretty sick, probably lymes disease. That was hard, but since it was only a few months after losing Lua, there was nothing that could be as painful as that.. but I do miss him.. He was the last dog we got while living at my parents house, so I remember him the most of all our pets. Best thing about that dog, is while I considered him my dog, he was still mostly my parents responsibility. Now having our own dog as grown ups, it really sucks, you realize how much work these stinkin' dogs are!
May ended up staying over night at the hospital when she got a touch of pneumonia... scariest moment in my life, just a few months after Lua passed away, May gets sick and her oxygen level was terrible. That was a really rough night!
We went to Alton Brown's show (?) not even sure what to call that.. but that was a lot of fun! A great valentines gift!
We celebrated Lua's 1st birthday. What a day that was... It could have been so hard, but with all the wonderful friends and family that came to help us celebrate it and remember her on her day, made the day so much better than I ever expected. Obviously it could have only been better if she would have been here with us. I was just remembering last night how we got the balloons to release the day before the celebration and when I woke up the next morning they were all flat! We had to try to get more done in time and the store didn't have the colors we wanted, they only had white and blue which I was afraid wouldn't show up in pictures against the blue and white sky! It started to become a mini disaster but they did end up giving us the balloons for free and the pictures turned out wonderful. Oh and the cupcakes that were brought! We sure are spoiled by our friends and family!
I also received a wonderful gift from a truly great friend, a remembrance blanket made from Lua's things. Such a precious gift to have! Again, we are pretty spoiled!
Our guinea pig passed away this year.... very bitter sweet thing. He was mine and my husbands first pet, we had him for 5 years! Speaking of which, we celebrated our 5 years of marriage this year! But it was sad to see him go, I am glad I don't have to clean up his poop anymore though...
We had a tattoo party!
We went to DISNEY! May's favorite thing ever! What an amazing trip that was!
And found out that I was pregnant while we were there! It is ironic how that happened. After losing Lua I knew I really wanted another child, not just for me, but for May to have a sibling that she deserves. I went a few months really not trying to prevent it from happening, but then the month I decided it would be really good to wait awhile yet, is the month we find out I'm pregnant. Before getting pregnant I was struggling a lot with my blood pressure, for no reason it seemed it would be pretty high. I was doing Yoga and took salt out of my diet and changed my diet to try to help. I started advocare, but nothing was working. I was really stressed from losing Lua. It really took a toll on me. I couldn't sleep at night. I was constantly frustrated and anxious. My first appointment to confirm pregnancy, my blood pressure was already looking better. With this entire pregnancy I haven't had high blood pressure once, which I assumed we could expect it to go through the roof with all the stress we have been having. This little guy has truly blessed me in the end. Even with all this stress, in a way he took off some of the pain I had from losing Lua. He has given me some hope, and I keep hoping that he will continue to do this for us. We will see. I am thankful for this, even if it has come with a lot of pain. In the end though, I only want what is best for him.
We Moved to a new city and a New house!
We had an amazing 4th birthday celebration for May! It truly could not have been a better day, and I feel bad that she won't have a birthday celebration next year because there is no way anything could be better than last years!
May started school and she did gymnastics. So fun watching all the new things she has learned and can do now.
My uncle passed away this year, and a cousin. I know many other people have lost loved ones this year too.
We all have made some new friends this year, and you cannot put a price on that, that is for sure.
So it seems like it is only fair that we end this year with a bang and hope that it is a bang in a good way!
Come on baby boy.. everyone is cheering for you!
Thanks for the insane year everyone.
So I am on pins and needles right now. In just a few days we will know, finally have answers, and see what our future will become. I had been so excited for Christmas but now with the csection date moved to december 28th, I am just terrified, once Christmas is over this little baby will be coming out. It could or will be a very bitter sweet situation. If he comes out doing pretty good or breathing on his own or maybe just being able to eat on his own, or maybe even moving more than Lua did, we could be in a very good situation. If he comes out and they can't intubate and the worst happens, then it will be a very sad and difficult day and right after Christmas to top it off. In that case I would have wished I could have kept him inside for as long as possible. I do not know what to expect, at all! When I was pregnant with Lua and going into labor I assumed it would be so much like how it was with May, and it was sooo different. First I was induced with May, but I got to end up holding her and having this amazing healthy baby. Lua was a much different case. I am thinking I can just assume that this time this baby's birth will be very similar to Lua's but it will be different already because I am having a csection, which I am terrified for! Anyway, that alone will make the delivery much different, so I really have no clue what to expect to happen with this baby. One moment at a time for the next few days.
I can't really believe it is almost the end of the year already... almost doesn't seem possible! As I go through my pictures and see all the things that happened this year, it could almost be 2 years into one. We were mostly still trying to recover from losing Lua, and it seems like our lives went crazy.
In January my dog was put down after he had gotten pretty sick, probably lymes disease. That was hard, but since it was only a few months after losing Lua, there was nothing that could be as painful as that.. but I do miss him.. He was the last dog we got while living at my parents house, so I remember him the most of all our pets. Best thing about that dog, is while I considered him my dog, he was still mostly my parents responsibility. Now having our own dog as grown ups, it really sucks, you realize how much work these stinkin' dogs are!
May ended up staying over night at the hospital when she got a touch of pneumonia... scariest moment in my life, just a few months after Lua passed away, May gets sick and her oxygen level was terrible. That was a really rough night!
We went to Alton Brown's show (?) not even sure what to call that.. but that was a lot of fun! A great valentines gift!
We celebrated Lua's 1st birthday. What a day that was... It could have been so hard, but with all the wonderful friends and family that came to help us celebrate it and remember her on her day, made the day so much better than I ever expected. Obviously it could have only been better if she would have been here with us. I was just remembering last night how we got the balloons to release the day before the celebration and when I woke up the next morning they were all flat! We had to try to get more done in time and the store didn't have the colors we wanted, they only had white and blue which I was afraid wouldn't show up in pictures against the blue and white sky! It started to become a mini disaster but they did end up giving us the balloons for free and the pictures turned out wonderful. Oh and the cupcakes that were brought! We sure are spoiled by our friends and family!
I also received a wonderful gift from a truly great friend, a remembrance blanket made from Lua's things. Such a precious gift to have! Again, we are pretty spoiled!
Our guinea pig passed away this year.... very bitter sweet thing. He was mine and my husbands first pet, we had him for 5 years! Speaking of which, we celebrated our 5 years of marriage this year! But it was sad to see him go, I am glad I don't have to clean up his poop anymore though...
We had a tattoo party!
We went to DISNEY! May's favorite thing ever! What an amazing trip that was!
And found out that I was pregnant while we were there! It is ironic how that happened. After losing Lua I knew I really wanted another child, not just for me, but for May to have a sibling that she deserves. I went a few months really not trying to prevent it from happening, but then the month I decided it would be really good to wait awhile yet, is the month we find out I'm pregnant. Before getting pregnant I was struggling a lot with my blood pressure, for no reason it seemed it would be pretty high. I was doing Yoga and took salt out of my diet and changed my diet to try to help. I started advocare, but nothing was working. I was really stressed from losing Lua. It really took a toll on me. I couldn't sleep at night. I was constantly frustrated and anxious. My first appointment to confirm pregnancy, my blood pressure was already looking better. With this entire pregnancy I haven't had high blood pressure once, which I assumed we could expect it to go through the roof with all the stress we have been having. This little guy has truly blessed me in the end. Even with all this stress, in a way he took off some of the pain I had from losing Lua. He has given me some hope, and I keep hoping that he will continue to do this for us. We will see. I am thankful for this, even if it has come with a lot of pain. In the end though, I only want what is best for him.
We Moved to a new city and a New house!
We had an amazing 4th birthday celebration for May! It truly could not have been a better day, and I feel bad that she won't have a birthday celebration next year because there is no way anything could be better than last years!
May started school and she did gymnastics. So fun watching all the new things she has learned and can do now.
My uncle passed away this year, and a cousin. I know many other people have lost loved ones this year too.
We all have made some new friends this year, and you cannot put a price on that, that is for sure.
So it seems like it is only fair that we end this year with a bang and hope that it is a bang in a good way!
Come on baby boy.. everyone is cheering for you!
Thanks for the insane year everyone.
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