I think this may be a short entry today. Naya had another great night last night. Not much fluctuations in her blood pressure or saturations for the first time in a longgggg time. When we came in this morning her stats were beautiful and she had lost even more weight. We finished off the day yesterday with a -215 in fluid intake/outtake. It was actually a pretty quiet day here. It was so quiet, it was actually eerie. The monitors are set to go off whenever one of the patients stats fall below a certain range that their doctor has set for them. We barely heard those noises all day. We actually only heard them at the end of the day because she had another blood transfusion and her blood pressure kept going up! Apparently, my daughter is a vampire because she really, really likes the blood transfusions. They had to aggressively come down on her pressers because her blood pressure was so high (we had to come up again after the transfusion was completed but that was to be expected). We are now sitting at a comfortable level for pressers and they should be coming down even more tonight. One wonderful sign was that despite the drop in her blood pressure after she got the blood, her pulse and her oxygen saturation remained consistent. This is almost unheard of for Ms. Naya, the bubble beard. It was amazing - she was blowing bubbles all day and they would land on her chin and form a beard of bubbles. Like I said, she is a talented little girl.
Right now, her stats are still looking great and her oxygen saturations look better than I have ever seen them. She is also looking at another -200+ fluid input/output day. I can't say it enough how happy and proud of her we are right now. We are truly proud of our little miracle. Everyone here is rooting for her and it was truly amazing how the mood was changed in her room today. Much lighter with a lot of laughter, even from her attending doctor! I was able to get a lot of work done and we were all sitting here, a little bored. It was actually a really, eerily quiet day today throughout the entire ward. It's crazy how quiet and calm can start to feel weird. We were also lifted from isolation (which she was on because of the bacterial infections) so we almost got a roommate today. I told them no boys though because she is not allowed to have boys in her room. The baby ended up being put in the room next door (not because of me though) because that room was completely empty and it is a little preemie coming in. Oh well, at least we still have this whole room to ourselves! (We literally have the biggest room in the whole ward - I call it Naya's penthouse suite.)
Dan got me a homework assignment today too. The manager was in here earlier working on the parents NICU directory with the charge nurse working in Naya's room. She was asking for our opinion and Dan suggested that there should be a note from a NICU parent in the packet to give it a more personal touch. Guess who gets to write that now. Thanks hubby!
We also had something strange happen to us on the way back here from dinner tonight (we were walking back from happy hour at Home Restaurant in Los Feliz). We were stopped by a hipster mustache guy who told us we couldn't walk in a certain part of the sidewalk because it was too dangerous. We were super confused because there was nothing there. He then said they were shooting a movie and that's why we couldn't walk there. Again, we were super confused because there was NOTHING there. So we walked on it anyway. Oh, Hollywood. Gotta love you. I will have to walk out tomorrow and take a picture of the gigantic Scientology building that is next door to this hospital. That will really show how special this place is.
Good night everyone. Please pray that we have more days like the past two and that the corner is finally being turned. We appreciate you all!
Wednesday, August 31, 2011
Tuesday, August 30, 2011
Juxtaposition
The NICU is such a bizarre place. It can hold both extreme happiness and extreme terror in an instant. Or it can be filled with blue skies and sunny weather but have rain clouds pouring down over one area and vice-versa. Today was one of those days. I'll start with the good.
When we walked in this morning, the doctors were already rounding by Naya's bedside. Strange for a couple of reasons, mainly that we got to the hospital early this morning (around 8:30) and the doctors don't usually round until 10ish. We snuck in and crept toward the back of the room so we didn't disturb them and listened in for a few minutes. After the attending noticed us she said, "have you been here yet this morning?" We told her we just got there and she told us to go look at our daughter. Dan and I went to her bedside and we saw, basically, a different baby. Naya looked like she had shed 10lbs overnight. Her eyes weren't painfully puffy, her chest had shrunk drastically and her nose actually looked in proportion to her face. She looked absolutely beautiful. I started crying, Dan had tears in his eyes, Brooke (nurse) started crying and the attending even said she had to leave the room because we were going to make her start crying. She also had tears in her eyes. It was an incredible wonderful and powerful moment.
Naya has stayed pretty stable all day with a few dips in blood pressure and sats but nothing too significant. Her pressers have remained pretty consistent all day too, which is huge for her. And they were NOT at very high levels. Her urine output has been amazing all day and right now, she is at a negative 200ml for the day. (She was at -100ml yesterday.) She actually looks smaller right now then she did this morning. My little girl is so amazing. I hope this is the corner that we've been waiting for. I'm so proud of her. My strong little bubble monster.
Today volunteers also brought by a sweet little teddy bear made for her by another child. She is wearing a princess costume and is named Butter Cup (two words). Very sweet. Also, every Tuesday, volunteers come by and give patients, parents and nurses massages. Dan and I enjoyed that. I think Dan may have even gained a few inches from the neck massage. One of our favorite night nurses is also on tonight, after a weeks vacation in New York. She told us that she and her fiance went to the Yankee's game on Saturday night and at one point, were discussing Naya. I guess her fiance said "how about this next hit is for that little girl." Apparently, the next hit was a grand slam (the second of that game). We really appreciated that story. Gave us more hope for some reason.And now the bad. The little boy in the room next to Naya passed away today. I'm not sure what was wrong with him but he was on something called Ecmo where he was hooked up to a machine that essentially acted as his heart and his lungs (his blood was pumped out of his body through the machine and then back into his body.) It's basically dialysis for the heart and lungs. It was a procedure that they thought Naya might need but she's too sick for. I knew something was up because when we came in this morning, a whole surgical team was in his room. After they left, they closed all of the doors and shut all the shades. When I went out of Naya's room to use the bathroom, the door was open and they were cleaning out the room. I asked Brooke if he had passed away and she nodded. I cried for that little boy even though I did not know him nor had spoken to his family much. Hit way too close to home. I only pray that his family has the strength and support to get through this.
I want to thank everyone again for their support and prayers for our family during this time. We are consistently blown away by the love, thoughts and generosity of our family, friends and community. I can't believe how much effort and expense people have put in planning fundraisers and setting up accounts and websites. You all know who you are and we are incredibly thankful. Today, my dad brought by cash for us that was raised by some community members at a recent poker tournament they held for Naya's benefit. We are very lucky to have everyone in our lives. I can't say that enough.
Monday, August 29, 2011
Loop de Loop
Today's ride was much less a standard roller coaster and much more a loop de loop. Lots of up-and-downs and spirals during this ride. Started off okay but we had some some blood pressure issues overnight that caused her pressers to be raised to the maximum levels again. Her cycles are so damn frustrating. She has pretty good days so they start lowering the meds because her pressures are too high, she sustains them for awhile and then crashes at about 3am. Every. Single. Day. That is why we hate walking in here in the morning. It is such a letdown.
When we got in this morning we were greeted with the news that they believed she had a leak in her right lung that might need to be fixed with a chest tube. However, with the state of her edema and her extremely fragile state, putting in a chest tube might be too dangerous. Our choice was to essentially to put in the tube despite the risk and give her a chance or let things be and be prepared to let her go. This is an extremely hard decision that I really didn't think I would ever face. After multiple xrays showing that it was getting worse, Dan and I decided to have the chest tube put in despite the immediate risk. We spent the afternoon taking turns singing and talking to her while stroking her head and holding her hand.
When the doctor (finally) arrived, we kissed her and told her how much we loved her and left the room to wait. I can't even describe how horrible this feeling is, even though we have had to do it multiple times already. I never, ever thought I would be faced with so many life-or-death decisions. It puts so many trivial things in perspective. Like I said yesterday, we are truly changed forever. The chest tube took 15 minutes to put in and she did beautifully. Her stats immediately shot through the roof - her heart rate is better than I have ever seen it (136 right now), her sats are in the NORMAL range (!) and her blood pressure is on the high side. So high that even though they want to ween her very slowly, they had to come down on the pressers by half! She has also had a negative urine output for the first time today. She is so amazing. We are so proud to be her parents. I can't believe that a 36 day old has taught me so much about strength and perseverance. Her will and fight to live completely baffle me. She wants to come home to us and keeps fighting to do so. I only can hope and pray that it will be sometime soon.
When we got in this morning we were greeted with the news that they believed she had a leak in her right lung that might need to be fixed with a chest tube. However, with the state of her edema and her extremely fragile state, putting in a chest tube might be too dangerous. Our choice was to essentially to put in the tube despite the risk and give her a chance or let things be and be prepared to let her go. This is an extremely hard decision that I really didn't think I would ever face. After multiple xrays showing that it was getting worse, Dan and I decided to have the chest tube put in despite the immediate risk. We spent the afternoon taking turns singing and talking to her while stroking her head and holding her hand.
When the doctor (finally) arrived, we kissed her and told her how much we loved her and left the room to wait. I can't even describe how horrible this feeling is, even though we have had to do it multiple times already. I never, ever thought I would be faced with so many life-or-death decisions. It puts so many trivial things in perspective. Like I said yesterday, we are truly changed forever. The chest tube took 15 minutes to put in and she did beautifully. Her stats immediately shot through the roof - her heart rate is better than I have ever seen it (136 right now), her sats are in the NORMAL range (!) and her blood pressure is on the high side. So high that even though they want to ween her very slowly, they had to come down on the pressers by half! She has also had a negative urine output for the first time today. She is so amazing. We are so proud to be her parents. I can't believe that a 36 day old has taught me so much about strength and perseverance. Her will and fight to live completely baffle me. She wants to come home to us and keeps fighting to do so. I only can hope and pray that it will be sometime soon.
Sunday, August 28, 2011
Same old, same old
Today was another decent day. No blood pressure issues but I think this was mainly because her arterial line was not showing a decent reading for most of the day. Luckily, they were able to get some decent cuff pressures today despite the edema. Her sats weren't beautiful but they worked. Her heart rate also got to one of the lowest points that I've seen throughout her hospital stay (averaging around 155-160 right now, which is really low for her.) The doctors have decided to move much slower on attempting to ween her vent or pressers in order to create a constant so they can test out the newer meds for the lymphangiectasia and see how they are working. They had to gradually up these meds but they are finally at a therapeutic level tonight, so now we just wait and hope they start working. She's still on diuretics and they seem to be helping a bit but not significantly. If these new meds start working, they will also help get rid of this edema. I also just realized I used the word decent 3 times in the first 3 sentences. This was not intentional but it pretty much sums up the day.
I came into the day a little bit depressed but for an entirely different reason than before. Last night when we were walking "home" we met up with a few people we know from the Ronald McDonald House in which we are staying. I should probably explain what a Ronald McDonald House is for those that are unfamiliar. Basically, it's a house that's run by a charitable organization that gives people who are in our situation a place to live for cheap. Essentially, it's a house full of people who are far from home and dealing with extremely ill or dying children. You can imagine how wonderfully cheery this place is. Anyway, we stopped to talk to these people and hearing their stories brought us both to tears. One of the families is from England and they are here because their 4 year-old has cancer and they've run out of treatment options. The other family is from Palmdale and their daughter, who is also 4, has leukemia and they are basically at the end of their treatment options as well. I think it really hit me last night that our daughter is that sick. We are not unlike these other people. Our child's life hangs in the balance just like theirs. The thing that is distinguishing us from them is the amount of support we have from our families, our communities and our friends. I can't even fathom how we could be surviving this without everyone. It's a very humbling experience and I know that both of us are changed forever.
An example of this - Dan and I went to a church today. Granted, it was a small non-denominational church in Hollywood that was very, very relaxed but we went. The entire service was about love and the different kinds of love in life. I actually enjoyed it because it was non-preachy and almost a college-style lecture. There was also a lot of singing that was very representative of different cultures (The choir actually sung songs that were African American, South African, Brazilian and American in culture.) The congregation also shared good and bad things in their lives and asked everyone for prayers and positive energies from all. It was very communal, which was enjoyable. It's amazing how many people came up to us after to offer us - total strangers - support. One lady even offered us a place to stay if we ever need it. Being in a situation like this really makes you realize how many wonderful people there are in this world, even in Hollywood ;)
I came into the day a little bit depressed but for an entirely different reason than before. Last night when we were walking "home" we met up with a few people we know from the Ronald McDonald House in which we are staying. I should probably explain what a Ronald McDonald House is for those that are unfamiliar. Basically, it's a house that's run by a charitable organization that gives people who are in our situation a place to live for cheap. Essentially, it's a house full of people who are far from home and dealing with extremely ill or dying children. You can imagine how wonderfully cheery this place is. Anyway, we stopped to talk to these people and hearing their stories brought us both to tears. One of the families is from England and they are here because their 4 year-old has cancer and they've run out of treatment options. The other family is from Palmdale and their daughter, who is also 4, has leukemia and they are basically at the end of their treatment options as well. I think it really hit me last night that our daughter is that sick. We are not unlike these other people. Our child's life hangs in the balance just like theirs. The thing that is distinguishing us from them is the amount of support we have from our families, our communities and our friends. I can't even fathom how we could be surviving this without everyone. It's a very humbling experience and I know that both of us are changed forever.
An example of this - Dan and I went to a church today. Granted, it was a small non-denominational church in Hollywood that was very, very relaxed but we went. The entire service was about love and the different kinds of love in life. I actually enjoyed it because it was non-preachy and almost a college-style lecture. There was also a lot of singing that was very representative of different cultures (The choir actually sung songs that were African American, South African, Brazilian and American in culture.) The congregation also shared good and bad things in their lives and asked everyone for prayers and positive energies from all. It was very communal, which was enjoyable. It's amazing how many people came up to us after to offer us - total strangers - support. One lady even offered us a place to stay if we ever need it. Being in a situation like this really makes you realize how many wonderful people there are in this world, even in Hollywood ;)
Saturday, August 27, 2011
Mixed Emotions
Today started off rough. I think I start half my blog entries with these words but it is only fitting because half of our days start off rough. At about 4am, Naya had some more blood pressure issues and they had to raise the level on her pressers again. So disheartening to come in and see low numbers on the monitor and high numbers on her medication. It really affects our mentality for the rest of the day. Her blood pressure eventually rose up again after she got some fluid. It's ironic because that's what her body needs yet is what is causing some of her problems.
The doctors rounded around 10ish and we talked to the doctor who made the connection to this condition they believe Naya has called lymphangiectasia, an extremely rare disease with no true "cures." To put in in basic terms, her lymph nodes are very leaky. It explains a lot of symptoms she has been having and why they haven't been able to get rid of her edema.
I have such mixed feelings about this diagnosis. In one way, I am glad that we may finally know somewhat about what is going on and what we need to do for treatment. On the other hand, it is terrifying that she may have this particular disease. We've spent a lot of the day reading up on it and that has made us very depressed since it's chronic and may affect her day-to-day life and might involve a lot of future hospitalizations. I know we shouldn't go there, especially since she is a) not diagnosed yet and b) nowhere near out of the woods yet but I can't help it. It terrifies me. This is not something you want for your child - a lifelong illness that is hard to control. I still can't believe this is all happening to her. I feel like such a failure as a mother that I wasn't able to protect her from this.
This diagnosis also leaves us with sooooo many other questions and worries. We don't know how she got this disorder - it could have been a result of the septic shock or she could have been born with it. If so, is it genetic or just some sort of abnormality? (They don't know). This disease is so rare that they can't really answer any questions about it. They actually said they would like to get our permission to make her a case study. It's just un-freaking-believable. The fact that it is such a rarity gives me even more mixed feelings. Are they going to use her as a guinea pig? Or will this push them even harder to help her get better? One thing I do know is that I feel terrible about this. I feel like I somehow caused this to happen. All I know is that she doesn't deserve this. And my husband and son don't deserve to be dealing with this. Nor our families. Nor does anyone. This is not what you expect or plan for to happen when you are pregnant and desperately want to have a baby. That's why we didn't even find out the gender when we were pregnant - all we cared about was having a healthy and happy baby that we couldn't wait to love. I just wish she would start getting better. I hate seeing her like this and it kills me a little more everyday. Sorry for ranting a bit but, as I said, my emotions are all over the place on this one and I haven't really had time to digest all of this information.
Moving on to happier things, my friends Arlan and Todd came to spend some time with us this afternoon and we went to dinner at Home, a cute restaurant in Los Feliz that serves breakfast all day long. I got some ridiculous pancakes covered with sauteed bananas and walnuts with a yummy frosting on it. And a beer. Cause that's how I roll. It was nice to see them and spend some time in the "normal" world again. Of course, that makes us feel guilty even though we are going to go crazy if we don't get out of here once and awhile. They left a little while ago and then Dan and I went back to her room. Her stats are currently okay but her arterial line is acting up. Hopefully, they can fix it so they don't have to start another one in her. Dan and I are going to stick around for a bit more and then head back to pass out. It has been a long and emotional day. Thanks for keeping us in your thoughts and prayers. As always we appreciate it.
PS- Happy Birthday to two of my besties Lindsay and Jess. Love you both and I hope you had wonderful days. I'm sorry I couldn't be there.
The doctors rounded around 10ish and we talked to the doctor who made the connection to this condition they believe Naya has called lymphangiectasia, an extremely rare disease with no true "cures." To put in in basic terms, her lymph nodes are very leaky. It explains a lot of symptoms she has been having and why they haven't been able to get rid of her edema.
I have such mixed feelings about this diagnosis. In one way, I am glad that we may finally know somewhat about what is going on and what we need to do for treatment. On the other hand, it is terrifying that she may have this particular disease. We've spent a lot of the day reading up on it and that has made us very depressed since it's chronic and may affect her day-to-day life and might involve a lot of future hospitalizations. I know we shouldn't go there, especially since she is a) not diagnosed yet and b) nowhere near out of the woods yet but I can't help it. It terrifies me. This is not something you want for your child - a lifelong illness that is hard to control. I still can't believe this is all happening to her. I feel like such a failure as a mother that I wasn't able to protect her from this.
This diagnosis also leaves us with sooooo many other questions and worries. We don't know how she got this disorder - it could have been a result of the septic shock or she could have been born with it. If so, is it genetic or just some sort of abnormality? (They don't know). This disease is so rare that they can't really answer any questions about it. They actually said they would like to get our permission to make her a case study. It's just un-freaking-believable. The fact that it is such a rarity gives me even more mixed feelings. Are they going to use her as a guinea pig? Or will this push them even harder to help her get better? One thing I do know is that I feel terrible about this. I feel like I somehow caused this to happen. All I know is that she doesn't deserve this. And my husband and son don't deserve to be dealing with this. Nor our families. Nor does anyone. This is not what you expect or plan for to happen when you are pregnant and desperately want to have a baby. That's why we didn't even find out the gender when we were pregnant - all we cared about was having a healthy and happy baby that we couldn't wait to love. I just wish she would start getting better. I hate seeing her like this and it kills me a little more everyday. Sorry for ranting a bit but, as I said, my emotions are all over the place on this one and I haven't really had time to digest all of this information.
Moving on to happier things, my friends Arlan and Todd came to spend some time with us this afternoon and we went to dinner at Home, a cute restaurant in Los Feliz that serves breakfast all day long. I got some ridiculous pancakes covered with sauteed bananas and walnuts with a yummy frosting on it. And a beer. Cause that's how I roll. It was nice to see them and spend some time in the "normal" world again. Of course, that makes us feel guilty even though we are going to go crazy if we don't get out of here once and awhile. They left a little while ago and then Dan and I went back to her room. Her stats are currently okay but her arterial line is acting up. Hopefully, they can fix it so they don't have to start another one in her. Dan and I are going to stick around for a bit more and then head back to pass out. It has been a long and emotional day. Thanks for keeping us in your thoughts and prayers. As always we appreciate it.
PS- Happy Birthday to two of my besties Lindsay and Jess. Love you both and I hope you had wonderful days. I'm sorry I couldn't be there.
Friday, August 26, 2011
4 weeks
As of today, Naya has been in the hospital 4 weeks. 28 days out of the 33 she has been alive. That's how the doctors start their rounds every day, by listing the baby's days of life and the length of hospitalization. Very sad numbers in the NICU. This place has to be the saddest place I have ever been in. They try to muddle the fact that there are 5 stories of the sickest children with bright colors and cute artwork. Please don't get me wrong - I am so appreciative of this place and the wonderful people who work here and are helping so many children - but it does wear on you when you think about it.
Enough of my rambling though. Onto Miss Naya. Or as my mother-in-law calls her Naya, The Warrior Princess. Or Naya Papaya. I tend to give my children lots of nicknames despite how short their names are. Ask Ty (or T-dog or T, as I call him.) Naya has had a good day. No blood pressure issues (cross your fingers) and sats have been up in the 90's all day (which we want!). They've been able to ween the pressers a bit and stay there. It's hard to get your hopes up when you know that she cycles but I have to believe and am praying that she is turning the corner. Scratch that, she will turn the corner. This is it. As for her pee, she isn't at a negative output yet but quite close. She is getting some more shots of diuretics tonight and I believe they are helping. (I can't believe I'm writing about my daughter's pee on a blog. She is definitely not going to like me very much when she is a teenager.)
One bright note of the day is that they believe they may have found the reason for all of the edema and why she her blood vessels are leeking so much fluid. She may have a rare lympathic condition that she could have acquired as a result of the sepsis. They started her on a new drug today that will help with this, in the case that she has this disorder. (I call it the Oreo drug since I can't pronounce it's name and it has oreo in it.) Weird to say it, but I hope she does because at least then we would know somewhat about what we are dealing with. If this drug works, it could help her vessels draw the fluids in, which will in turn help her kidneys pee it out, which will relieve the edema, which will lessen the pressure on her heart and lungs. Amazing how the human body is so tied together, huh. I'm praying this works. Again, it has too!
Dan's parents are still here and we had a nice day with them. We went out to Glendale for lunch at the suggestion of our favorite Nurse Brooke. Had a yummy lunch and went to the Americana at Brand. Walking into this "mall" felt like walking into Disneyland. They had a trolley that went around the complex. Check out this amazingly gaudy statue they also have there. The are so proud of it too - they have little gold plates all over the sidewalk. Anyway, we threw some pennies in the fountains and made wishes. I hope Gold Greek God Statue Man grants wishes.
I'm going to let her listen to some more music on Pandora and then Dan and I will leave to get some rest. We are going to do some mellow Classical music tonight because she had a lot of lively kids songs today. We think her favorite is "If You're Happy and You Know It" and "The Hokey Pokey" since she seems to move around a lot when they come on. Which they do. A lot. A few of the nurses have been walking around singing these songs too and wondering why. I feel a little bad but oh well.
Thanks again everyone for all of your support. Dan and I are still shocked and amazed at how much everyone cares. We truly appreciate it. I hate asking for more help but please keep this little lady in your thoughts and prayers. We need this to be turning the corner.
Thursday, August 25, 2011
I hate having to think up titles for these things so I'm not going to anymore unless I can come up with something poignant. I think every single one of these posts could be called Rollercoasters. Today started off all right. Naya had a little dips in blood pressure over night but all-in-all, was able to maintain stability most of the day and they were able to bring her blood pressure meds down. She started to dip around 5:00 and went way down around 7:00. I should mention that from 6:30-7:30, we are not allowed to be in the room as it is shift change. Her nurse had to raise her meds up to maximum levels again to make her pressure go up to where it is at right now. I don't understand why this happens every single day. It kills me because they don't know for sure as well. Logic tells me that it happens because her heart has been working so hard all day that after a while, it just can't take it anymore and crashes.
Her lungs saw a teeny, tiny almost non-significant level of improvement today that was reflected in the C02 levels in her blood and they were able to adjust the vent levels a smidge. I almost wouldn't mention it but I am clinging to anything at this point. If she can continue to maintain a good C02 level, they could keep slowly weaning on the vent, which would also help her heart. I need her to do this. The one truly positive thing of the day was that she peed a lot both today and yesterday. We are not at negative fluid levels yet but getting closer. They are going to start her on a different dieuretic to go along with the one she's already on and see if it does anything. We need to get this damn edema off of her so her poor heart and lungs can get some relief. She may have a chance if we can do this.
As for myself, I had a pretty rough day. Dan and I are talking to the social worker here on a daily basis now and it's causing us to deal with things that we may not want to. It hurts to talk about the what ifs but I know it's necessary. My faith and strength got tested a lot by this today and it definitely affected my mentality and I shut myself off a bit. I wish I wouldn't do that but it's the way I've always dealt with hard things that come up in my life. I feel a little bit better right now though, which is why I waited until this point to write this.
I do want to thank everyone for all the Words with Friends requests too - I couldn't believe how many people responded. (That also scares me because that means a lot of people are reading this and I am paying absolutely no attention to grammar or spelling. Sorry about that.) Dan appreciates it too and he says "keep it coming." My dad left today but Dan's parents came this afternoon. They took us to dinner at the best burger place ever called Umami Burger. If you are ever down here in the East Hollywood area, go there and have the Manly Burger (seriously, that is what it is called.) It is literally the best burger I have ever had in my life. Good beer and sweet potato fries make it the perfect place.
As always, please keep the prayers and positive thoughts coming. More pee, please! Thanks again for all of your support. It truly overwhelms us.
PS - This is Dan's way of killing time today. This is just one of the animals that watches over her in her bed.
Her lungs saw a teeny, tiny almost non-significant level of improvement today that was reflected in the C02 levels in her blood and they were able to adjust the vent levels a smidge. I almost wouldn't mention it but I am clinging to anything at this point. If she can continue to maintain a good C02 level, they could keep slowly weaning on the vent, which would also help her heart. I need her to do this. The one truly positive thing of the day was that she peed a lot both today and yesterday. We are not at negative fluid levels yet but getting closer. They are going to start her on a different dieuretic to go along with the one she's already on and see if it does anything. We need to get this damn edema off of her so her poor heart and lungs can get some relief. She may have a chance if we can do this.
As for myself, I had a pretty rough day. Dan and I are talking to the social worker here on a daily basis now and it's causing us to deal with things that we may not want to. It hurts to talk about the what ifs but I know it's necessary. My faith and strength got tested a lot by this today and it definitely affected my mentality and I shut myself off a bit. I wish I wouldn't do that but it's the way I've always dealt with hard things that come up in my life. I feel a little bit better right now though, which is why I waited until this point to write this.
I do want to thank everyone for all the Words with Friends requests too - I couldn't believe how many people responded. (That also scares me because that means a lot of people are reading this and I am paying absolutely no attention to grammar or spelling. Sorry about that.) Dan appreciates it too and he says "keep it coming." My dad left today but Dan's parents came this afternoon. They took us to dinner at the best burger place ever called Umami Burger. If you are ever down here in the East Hollywood area, go there and have the Manly Burger (seriously, that is what it is called.) It is literally the best burger I have ever had in my life. Good beer and sweet potato fries make it the perfect place.
As always, please keep the prayers and positive thoughts coming. More pee, please! Thanks again for all of your support. It truly overwhelms us.
PS - This is Dan's way of killing time today. This is just one of the animals that watches over her in her bed.
Wednesday, August 24, 2011
Little Changes
Today Naya turned 1 month old and it was another decent-ish day. When we came in the morning, her Blood Pressure and Sats were a bit low but nothing to drastic. We were glad to see that she had also been measurably peeing more. Her blood pressure and Sats remained pretty stable and consistent throughout the day. She is close to peeing out as much fluid as they are putting into her today, so that should help with the edema (swelling), which will (theoretically) reduce compression on lungs and heart. They also gave her a blood transfusion today, which they hope will pull in some of the fluids and help her pressure and peeing. The Doctor is still extremely worried about her chances for recovery though and told us that again today (We have asked for complete honesty.) It's very hard to hear but ever since yesterday, I've felt some sort of strength take over me where I truly believe that she is going to get better and that everything is going to be okay. I can't really describe it, it's actually very strange, but I believe in her strength. She wants to get better. Hundreds of people are out there rooting for her - that must mean something. And I do believe that she is showing slight improvements, just very,very slowly. Maybe I'm just avoiding the inevitable but I really don't care. That's how I'm choosing to deal with it and it's working for me.
Anyway, her hair seems to be getting lighter and I have definitely noticed some red tints in it. Her nurse (whom I just love!) changes her hair bows every morning. Today her bow was purple. Dan and I downloaded some Disney Princess Stories aps today and started reading them to her. (Side note - real Brother's Grimm fairy tales do not always have happy endings.) She seems to like them. We have also been playing her music from the Disney Station on Pandora, which she really seems to enjoy. It's funny, as soon as we turn the music on, her feet and hands start moving around and sometimes her stats improve. She loves her music just like her mama. I love seeing her moving around and responding to our voices and touch. It helps show me that she is really in there and that makes me want to fight harder.
Dan and I have been keeping ourselves pretty well occupied. Lots of Words with Friends. We have a game going with each other where all we try to spell are inappropriate words. It's an interesting looking Board and makes me laugh every time I see it. Dan is pretty competitve and I've noticed that my friend Lindsay (who has been playing Dan for awhile) is starting to do the same tactics that he does. He told me to say that if anyone want to play him, they can send a request to DeviousDM (he says the distraction helps). I agree. TyandNaya is mine :) We also are very, very good at Cat's Cradle (You know you remember that from grade school. If not, here's a tutorial with pictures.) http://www.ifyoulovetoread.com/book/chten_cats1105.htm
Pray for another stable night and a better tomorrow. We all appreciate the love, prayers and support.
Anyway, her hair seems to be getting lighter and I have definitely noticed some red tints in it. Her nurse (whom I just love!) changes her hair bows every morning. Today her bow was purple. Dan and I downloaded some Disney Princess Stories aps today and started reading them to her. (Side note - real Brother's Grimm fairy tales do not always have happy endings.) She seems to like them. We have also been playing her music from the Disney Station on Pandora, which she really seems to enjoy. It's funny, as soon as we turn the music on, her feet and hands start moving around and sometimes her stats improve. She loves her music just like her mama. I love seeing her moving around and responding to our voices and touch. It helps show me that she is really in there and that makes me want to fight harder.
Dan and I have been keeping ourselves pretty well occupied. Lots of Words with Friends. We have a game going with each other where all we try to spell are inappropriate words. It's an interesting looking Board and makes me laugh every time I see it. Dan is pretty competitve and I've noticed that my friend Lindsay (who has been playing Dan for awhile) is starting to do the same tactics that he does. He told me to say that if anyone want to play him, they can send a request to DeviousDM (he says the distraction helps). I agree. TyandNaya is mine :) We also are very, very good at Cat's Cradle (You know you remember that from grade school. If not, here's a tutorial with pictures.) http://www.ifyoulovetoread.com/book/chten_cats1105.htm
Pray for another stable night and a better tomorrow. We all appreciate the love, prayers and support.
Tuesday, August 23, 2011
Another day, another ride
Today started off rough. We came in to low sats and a low blood pressure. Overnight, they had to go up on and add a few meds to help stabilize and maintain her blood pressure. I have never seen her main presser med so high. Totally frightening. Her edema is also a little overwhelming - her poor little body is so swollen and looks so uncomfortable, it makes me want to cry. The edema is not only a cosmetic problem though, as it is restricting her lung and heart function too. She is on medication to try to help her pee it off but this morning, it still wasn't working as well cause her blood pressure was so low. We listened to the Doctor's round and discuss all of this, Dan's parents left and then Dan and I went and did laundry, since we are out of clean clothes.
When we got back to the hospital, her stats were still very low. The attending came and sat down with us and basically told us that she is very worried about her chances of survival. This hit both of us very hard and we lost it for awhile. I had a long talk with the social worker assigned to her case that made me feel a lot better. She told me that the doctors aren't giving up on her yet and that I shouldn't either. That really hit home with me and made me feel a lot better. They are going to keep trying everything they can; Naya is fighting her little butt off so I figured I better pull myself together and believe in a miracle.
When I came back from talking to the social worker, Naya's blood pressure had come up a bit and her sats were looking a bit better. She was also peeing A LOT more. I stood next to her for awhile, playing music off my phone and stroking her hair, which she seemed to really like. Her blood pressure and sats both came up again and have remained to a decent level while writing this and the pee is still coming. In fact, they have had to go down on some of her pressures because her blood pressure has been higher than normal at times. Which I will take and her nurse agrees. She seems to like it when her pressure is on the higher side.
I hope and pray that today is a sign of what is to come and her cycles will STOP. We are so proud of her and how hard she is fighting. She will be that miracle. I have to believe it.
PS - Here is the view of Downtown LA from Naya's room in Hollywood. At least she has a nice (and surprisingly clear) view :)
When we got back to the hospital, her stats were still very low. The attending came and sat down with us and basically told us that she is very worried about her chances of survival. This hit both of us very hard and we lost it for awhile. I had a long talk with the social worker assigned to her case that made me feel a lot better. She told me that the doctors aren't giving up on her yet and that I shouldn't either. That really hit home with me and made me feel a lot better. They are going to keep trying everything they can; Naya is fighting her little butt off so I figured I better pull myself together and believe in a miracle.
When I came back from talking to the social worker, Naya's blood pressure had come up a bit and her sats were looking a bit better. She was also peeing A LOT more. I stood next to her for awhile, playing music off my phone and stroking her hair, which she seemed to really like. Her blood pressure and sats both came up again and have remained to a decent level while writing this and the pee is still coming. In fact, they have had to go down on some of her pressures because her blood pressure has been higher than normal at times. Which I will take and her nurse agrees. She seems to like it when her pressure is on the higher side.
I hope and pray that today is a sign of what is to come and her cycles will STOP. We are so proud of her and how hard she is fighting. She will be that miracle. I have to believe it.
PS - Here is the view of Downtown LA from Naya's room in Hollywood. At least she has a nice (and surprisingly clear) view :)
Monday, August 22, 2011
Roller Coasters
Today started out much like yesterday. We came in the morning and her stats were about the same as when we left last night (which I will gladly take.) She tolerated suctioning very well this morning and they were able to remove some gunk from her tubing. Her bp and sats held steady all day so, in turn, we were able to have a pretty nice day. Dan's parents are still here, so we had a great lunch and dinner with them in Los Feliz which is a neighborhood close to the hospital. The rest of the time, Dan and I worked, read to Naya and played Words with Friends.
When we came back from dinner (which we go to during shift change since we can't be in the room) Naya's bp and sats had dropped a bit. We are still waiting for them to come up and I don't think Dan and I are leaving until they do. This is the worst for me mentally. I don't understand how she can be fine all day and then things change at a snap of a finger. It's truly killing me. I have to keep telling myself that i need to be strong for her even though most of the time I feel like I absolutely can't take this anymore. I am literally staring at numbers on a screen and willing them to move. Begging for them to move. At the same time though, I would rather endure this forever than lose her. I just wish that she would finally turn the corner and I could know with even a little bit of certainty that she is going to be all right. I have to keep praying and visualizing the future. I have to keep believing in the positive because, in my head, there can't be any alternative. The stress is really starting to get to us though. Dan's hair is falling out and I've already lost my milk production despite pumping all the time. I feel guilty about that but there is nothing I can do. I just hope that I will be able to get some sleep tonight and try to regain some energy for tomorrow.
Pray for a good, stable night for us with higher bps and sats (and more pee, while your at it. She needs to get rid of some fluid too.)
When we came back from dinner (which we go to during shift change since we can't be in the room) Naya's bp and sats had dropped a bit. We are still waiting for them to come up and I don't think Dan and I are leaving until they do. This is the worst for me mentally. I don't understand how she can be fine all day and then things change at a snap of a finger. It's truly killing me. I have to keep telling myself that i need to be strong for her even though most of the time I feel like I absolutely can't take this anymore. I am literally staring at numbers on a screen and willing them to move. Begging for them to move. At the same time though, I would rather endure this forever than lose her. I just wish that she would finally turn the corner and I could know with even a little bit of certainty that she is going to be all right. I have to keep praying and visualizing the future. I have to keep believing in the positive because, in my head, there can't be any alternative. The stress is really starting to get to us though. Dan's hair is falling out and I've already lost my milk production despite pumping all the time. I feel guilty about that but there is nothing I can do. I just hope that I will be able to get some sleep tonight and try to regain some energy for tomorrow.
Pray for a good, stable night for us with higher bps and sats (and more pee, while your at it. She needs to get rid of some fluid too.)
Sunday, August 21, 2011
Sunday, August 21
The worst thing about anyday is walking into the hospital in the morning. We know how she was when we left but have no idea about what we are going to be facing in the morning. Today, we walked into better stats (heart rate, blood pressure & oxygen levels) then what we had left the night before which is a great feeling. Good days are so much easier (obviously) and let us have a little bit of more normalcy in our lives. We spent the day taking turns with our parents at her bedside. My dad, Lori & Ty left around 3 today to go back to SLO. Dan's parents will be here until Tuesday morning. Jess, Justin & Janna also visited us today which was a great surprise. It's nice having people around. It helps us take our minds off things for awhile. Again, a much easier task when it's a good day.
Today was all about maintaining stability. They have been adjusting her pressure meds and vent settings all day. Her lung X-ray also was significantly better then it was this morning. She is on a lot of support but she is still alive. I have to believe that means something. When I get really down, I've decided to picture her as a toddler, running around in a pink tutu, those cute pink baby crocs and her hair in pigtails. (I've decided she's going to have brown hair with a tint of auburn.) It helps.
We are lucky in the fact that Naya is so well-loved by the nursing staff here. Many nurses have stopped by our room today and told us that they are praying for her and can't stop thinking about her. They are so wonderful here. Her primary nurses are spoiling her with newhair bows and blankets. I know yesterday was upsetting for everyone here and no one is quite sure what is going to happen. That's really frightening.
We are going to stick around the hospital for another few hours before we head back to our "home" at the Ronald McDonald house to try and sleep for a few hours (my thoughts wouldn't shut up last night, so I got absolutely no sleep.) I only hope that she can maintain where she's at and has no troubles throughout the night.
Today was all about maintaining stability. They have been adjusting her pressure meds and vent settings all day. Her lung X-ray also was significantly better then it was this morning. She is on a lot of support but she is still alive. I have to believe that means something. When I get really down, I've decided to picture her as a toddler, running around in a pink tutu, those cute pink baby crocs and her hair in pigtails. (I've decided she's going to have brown hair with a tint of auburn.) It helps.
We are lucky in the fact that Naya is so well-loved by the nursing staff here. Many nurses have stopped by our room today and told us that they are praying for her and can't stop thinking about her. They are so wonderful here. Her primary nurses are spoiling her with newhair bows and blankets. I know yesterday was upsetting for everyone here and no one is quite sure what is going to happen. That's really frightening.
We are going to stick around the hospital for another few hours before we head back to our "home" at the Ronald McDonald house to try and sleep for a few hours (my thoughts wouldn't shut up last night, so I got absolutely no sleep.) I only hope that she can maintain where she's at and has no troubles throughout the night.
Saturday, August 20, 2011
First post - should have done this awhile ago.
It's been a little over 3 weeks since Naya has been in the hospital and I have meant to write about it everyday as a kind of therapeutic process but I haven't. I should have started from the beginning but now I can't. Oh well. Here goes.
I guess I should start by telling a little bit of background info. Naya was born on July 24. She was a beautiful 7lb, seemingly healthy baby. Dan and I fell in love immediately. The only thing that was a little off was the fact that she had some feeding problems in the hospital and didn't poop the first couple days. They told us not to worry about it and released us on the 25. We went home and started to get used to our new life. Unfortunately, Naya was still not eating or pooping. We took her to the pediatrician on July 26 and she gave her something to make her poop and told us to follow up with a lactation consultant about the eating. I told her it didn't seem to be a breast feeding specific issue - Naya wasn't interested in food at all - but we made the appointment anyway. We saw the lactation consultant on July 27 and she also found it odd that Naya had no interest in eating and encouraged us to go back to the pediatrician the next day. I should mention that during this time, we were forcing her to eat and she was spitting most of it up. We went back to the pediatrician on the 28th and they told us to increase feedings to every two hours, which we did to no avail. After she threw up every feeding that night, I had enough and we took her to the ER in SLO.
They thought she had a bowel obstruction, so they wanted to transfer her to Santa Barbara. That's when she started vomiting up bile and, we believe, aspirated some of it into her lungs. After stabilizing her, we got on an ambulance and went down to SB. When we got there, they had a hard time stabilizing her in the ER and rushed her to their PICU. The rest of that day was kind of a daze but they intubated her, stabilized her blood pressure, performed exploratory surgery and luckily, started her on antibiotics in case she had an infection. I didn't realize how close we were to losing her that day until a couple days later. Turns out, she was in septic shock and had pneumonia.
The last few weeks have been dealing with the consequences of these two things. Our doctor in SB equated it to cleaning up after a giant party - you think you have everything and then you just keep finding more leftover party junk. People warned us that this was going to be a roller coaster ride but I don't know how anyone can prepare themselves for this minute to minute real life or death circumstances.
After a particularly bad night in Santa Barbara, they airlifted Naya to Children's Hospital in LA on August 8 where she remains. Yesterday, was an awful day and we were sure we were going to lose her. Some how my little miracle fought through.
My goal now is to update this daily at the end of the day with not only Naya's condition but also as a kind of therapeutic way to let my feelings out. I apologize for this in advance.
I guess I should start by telling a little bit of background info. Naya was born on July 24. She was a beautiful 7lb, seemingly healthy baby. Dan and I fell in love immediately. The only thing that was a little off was the fact that she had some feeding problems in the hospital and didn't poop the first couple days. They told us not to worry about it and released us on the 25. We went home and started to get used to our new life. Unfortunately, Naya was still not eating or pooping. We took her to the pediatrician on July 26 and she gave her something to make her poop and told us to follow up with a lactation consultant about the eating. I told her it didn't seem to be a breast feeding specific issue - Naya wasn't interested in food at all - but we made the appointment anyway. We saw the lactation consultant on July 27 and she also found it odd that Naya had no interest in eating and encouraged us to go back to the pediatrician the next day. I should mention that during this time, we were forcing her to eat and she was spitting most of it up. We went back to the pediatrician on the 28th and they told us to increase feedings to every two hours, which we did to no avail. After she threw up every feeding that night, I had enough and we took her to the ER in SLO.
They thought she had a bowel obstruction, so they wanted to transfer her to Santa Barbara. That's when she started vomiting up bile and, we believe, aspirated some of it into her lungs. After stabilizing her, we got on an ambulance and went down to SB. When we got there, they had a hard time stabilizing her in the ER and rushed her to their PICU. The rest of that day was kind of a daze but they intubated her, stabilized her blood pressure, performed exploratory surgery and luckily, started her on antibiotics in case she had an infection. I didn't realize how close we were to losing her that day until a couple days later. Turns out, she was in septic shock and had pneumonia.
The last few weeks have been dealing with the consequences of these two things. Our doctor in SB equated it to cleaning up after a giant party - you think you have everything and then you just keep finding more leftover party junk. People warned us that this was going to be a roller coaster ride but I don't know how anyone can prepare themselves for this minute to minute real life or death circumstances.
After a particularly bad night in Santa Barbara, they airlifted Naya to Children's Hospital in LA on August 8 where she remains. Yesterday, was an awful day and we were sure we were going to lose her. Some how my little miracle fought through.
My goal now is to update this daily at the end of the day with not only Naya's condition but also as a kind of therapeutic way to let my feelings out. I apologize for this in advance.
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