(no subject)
May. 3rd, 2007 10:53 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
altarflameHey everyone. This is Tina. It's my first (slow, dizzy :p) walk down to the computer room. Hence, my first glimpse of the internet since our transfer (aside from G printing some of my comments and bringing them to our room).
I'm blown away, you guys. The raffle, the grocery delivery, tinaandelise.com, all of it...all the prayers and thoughts and donations. It almost doesn't seem real. There's no way to say Thank You enough.
I wanted to fill in some gaps where we've only recently heard things, or where something got "lost in translation":
Nancy and the head of obstetrics here are both theorizing that what happened to Elise is that she somehow got in a position to compress her cord in utero, before labor had even begun. We don't know how severely or for how long this deprived her of oxygen, only that it did. The afternoon before I went into labor, she passed a non stress test with flying colors - everything still looked absolutely perfect in there. But sometime probably later that day, there was compression, which put her into distress enough that she passed a LARGE amount of meconium. And one of the things that oxygen deprivation does is initiate a gasp reflex that caused her to aspirate some of the mec into her lungs (normally that wouldn't happen as they aren't breathing in there - Jake had a ton of mec and it didn't bother him at all). She's shown signs of trouble in about every major organ system...her heart while I was in labor, her lungs when she was first born, her kidneys for the first day or two, her brain in the form of seizures, and the unifying factor that causes all of these things, is oxygen deprivation. The good news is that small babies are amazingly resilient and a lot of these kinds of things can sometimes resolve themselves as continued growth and development goes on, in ways they couldn't in older children or adults.
I was really happy with how labor was going and how well I was handling it and all that. Nancy and I both believe I was entering or in transition when she arrived at the apartment. We're also both REALLY really grateful that Elise gave us a "clear sign" that there was real trouble, and as such we wasted no time getting here. I actually had a c-section wearing all of my jewelry and my bra. She was wonderful to have with us - she got us here quick, bulldozed right through protesting admissions people and security, and checked me in herself so Grant could stay with me. She also remembered things I was in no state of mind to remember, like preferences we had for what we did and didn't want them to do to our baby immediately after birth, and she stuck around to get us "good nurses" and put her students "at our beck and call" before she left. The staff here has been wonderful...nobody has even implied or looked at us weird or anything as if we caused any of this. I was kind of bracing myself for a lot of "What did you expect?" after how Jackson treated us with Jake, but it's not that way at all. I've actually had hour long conversations (several of them), one on one, with OBs, social workers and nurses who seem to respect our decisions and understand why we made them, and agree that this all just sucks.
Someone yesterday told us that they do think Elise has some significant brain damage, but in the temporal lobe, which has no effect on higher level thinking, only motion - things like seizures, ticks, etc. They also seemed to think that she may be able to be discharged as soon as a week or two from now, but on medication(s) to keep her from seizing. As she grows, we'll have to adjust the amounts based on her weight and that is a trial and error process that is mostly based on when and how often she starts seizing despite what she's already taking. Many babies outgrow the needs for the meds and the seizures completely by 6 months old, though.
Her MRI yesterday was postponed when another baby had a major emergency, so she had it this morning instead. We're supposed to meet with a bunch of people including a group of pediatric neurologists this afternoon, to get a more complete picture of everything all these tests are showing. Right now she has a small oxygen tube going to her nose, a catheter because she wasn't peeing on her own (but that she is producing pee and it is going to the bladder means her kidneys aren't in the danger we thought), a couple of wires monitoring things via her cord stump, and an IV for fluids and antibiotics to keep the mec in her lungs from becoming an infection. She has done well breathing on her own, though, and never needed to be intubated.
I'm dying to nurse her. I miss her in the hospital bed. It's way, way too bitterly familiar for me to be in a baby-less hospital room, struggling to sit up...I've been maintaining a pretty strong disconnect...it's like I have to just not let myself feel a whole lot of this, because as soon as I start to it's like a tidal wave that will kill me or something. And that makes my whole body clench up and then I'm in really, really intense pain and just kind of lose it altogether. I actually contemplated asking to be sedated the other night, which I've never done before.
I'm trying to focus on the good news from her. And drink in the little bits of contact. The kids all came and visited yesterday and that was good, too. I miss them. And, really, I can't imagine how this would be if my mother were not here and with the big kids, or if we were out of money. It seemed like such a monumental, miraculous thing that between Grant's business and the tax return, we actually put together an $8k budget for April and could do this. But of course what that means is that we exhausted every resource (selling my old car that had sat in the yard for years, yard sale, all kinds of stuff) and when curve balls started coming we had no where else to pull from. I think that on some level all of you have been keeping my faith alive, because even though what's happened to Elise and I seems so totally contrary to having been led here....the miracles are still coming and we're still provided for. I am confused about everything. I know this c/s was necessary, and it went very smoothly, so I'm not left with that sense of being cut for nothing or having my own complications...but to be honest those things are the least of my concerns right now anyway. I think I'm starting to ramble and my head feels kind of foggy from oxycodone and lack of sleep, so I will wrap this up...
I love you all. I appreciate everything so, so much. I don't know when I'll get down here again but I'm sure Grant will continue to update, and probably bring me comments/emails as well. He is amazing. I wish I had a little more right now, to support him with.
:*)
I'm blown away, you guys. The raffle, the grocery delivery, tinaandelise.com, all of it...all the prayers and thoughts and donations. It almost doesn't seem real. There's no way to say Thank You enough.
I wanted to fill in some gaps where we've only recently heard things, or where something got "lost in translation":
Nancy and the head of obstetrics here are both theorizing that what happened to Elise is that she somehow got in a position to compress her cord in utero, before labor had even begun. We don't know how severely or for how long this deprived her of oxygen, only that it did. The afternoon before I went into labor, she passed a non stress test with flying colors - everything still looked absolutely perfect in there. But sometime probably later that day, there was compression, which put her into distress enough that she passed a LARGE amount of meconium. And one of the things that oxygen deprivation does is initiate a gasp reflex that caused her to aspirate some of the mec into her lungs (normally that wouldn't happen as they aren't breathing in there - Jake had a ton of mec and it didn't bother him at all). She's shown signs of trouble in about every major organ system...her heart while I was in labor, her lungs when she was first born, her kidneys for the first day or two, her brain in the form of seizures, and the unifying factor that causes all of these things, is oxygen deprivation. The good news is that small babies are amazingly resilient and a lot of these kinds of things can sometimes resolve themselves as continued growth and development goes on, in ways they couldn't in older children or adults.
I was really happy with how labor was going and how well I was handling it and all that. Nancy and I both believe I was entering or in transition when she arrived at the apartment. We're also both REALLY really grateful that Elise gave us a "clear sign" that there was real trouble, and as such we wasted no time getting here. I actually had a c-section wearing all of my jewelry and my bra. She was wonderful to have with us - she got us here quick, bulldozed right through protesting admissions people and security, and checked me in herself so Grant could stay with me. She also remembered things I was in no state of mind to remember, like preferences we had for what we did and didn't want them to do to our baby immediately after birth, and she stuck around to get us "good nurses" and put her students "at our beck and call" before she left. The staff here has been wonderful...nobody has even implied or looked at us weird or anything as if we caused any of this. I was kind of bracing myself for a lot of "What did you expect?" after how Jackson treated us with Jake, but it's not that way at all. I've actually had hour long conversations (several of them), one on one, with OBs, social workers and nurses who seem to respect our decisions and understand why we made them, and agree that this all just sucks.
Someone yesterday told us that they do think Elise has some significant brain damage, but in the temporal lobe, which has no effect on higher level thinking, only motion - things like seizures, ticks, etc. They also seemed to think that she may be able to be discharged as soon as a week or two from now, but on medication(s) to keep her from seizing. As she grows, we'll have to adjust the amounts based on her weight and that is a trial and error process that is mostly based on when and how often she starts seizing despite what she's already taking. Many babies outgrow the needs for the meds and the seizures completely by 6 months old, though.
Her MRI yesterday was postponed when another baby had a major emergency, so she had it this morning instead. We're supposed to meet with a bunch of people including a group of pediatric neurologists this afternoon, to get a more complete picture of everything all these tests are showing. Right now she has a small oxygen tube going to her nose, a catheter because she wasn't peeing on her own (but that she is producing pee and it is going to the bladder means her kidneys aren't in the danger we thought), a couple of wires monitoring things via her cord stump, and an IV for fluids and antibiotics to keep the mec in her lungs from becoming an infection. She has done well breathing on her own, though, and never needed to be intubated.
I'm dying to nurse her. I miss her in the hospital bed. It's way, way too bitterly familiar for me to be in a baby-less hospital room, struggling to sit up...I've been maintaining a pretty strong disconnect...it's like I have to just not let myself feel a whole lot of this, because as soon as I start to it's like a tidal wave that will kill me or something. And that makes my whole body clench up and then I'm in really, really intense pain and just kind of lose it altogether. I actually contemplated asking to be sedated the other night, which I've never done before.
I'm trying to focus on the good news from her. And drink in the little bits of contact. The kids all came and visited yesterday and that was good, too. I miss them. And, really, I can't imagine how this would be if my mother were not here and with the big kids, or if we were out of money. It seemed like such a monumental, miraculous thing that between Grant's business and the tax return, we actually put together an $8k budget for April and could do this. But of course what that means is that we exhausted every resource (selling my old car that had sat in the yard for years, yard sale, all kinds of stuff) and when curve balls started coming we had no where else to pull from. I think that on some level all of you have been keeping my faith alive, because even though what's happened to Elise and I seems so totally contrary to having been led here....the miracles are still coming and we're still provided for. I am confused about everything. I know this c/s was necessary, and it went very smoothly, so I'm not left with that sense of being cut for nothing or having my own complications...but to be honest those things are the least of my concerns right now anyway. I think I'm starting to ramble and my head feels kind of foggy from oxycodone and lack of sleep, so I will wrap this up...
I love you all. I appreciate everything so, so much. I don't know when I'll get down here again but I'm sure Grant will continue to update, and probably bring me comments/emails as well. He is amazing. I wish I had a little more right now, to support him with.
:*)
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no subject
Date: 2007-05-03 03:43 pm (UTC)I'm so happy for you that you're able to hold Elise occasionally now, and that she seems to be doing better. I remember it was only a day before I could hold Molly but it seemed like eternity. I hope you know more soon about what's going on with her and what can be done. She seems like an amazing little soul already - isn't it cool how they give us signs that something's up?! Soon you'll be able to hold her and nurse her and drink her in!
You guys are so bathed in love from all over the world and it's so amazing. Still praying for your entire family!!
Go get some rest hun :)
no subject
Date: 2007-05-03 03:44 pm (UTC)I'll keep sending positive thoughts and prayers your way.
no subject
Date: 2007-05-03 03:47 pm (UTC)And I am so glad everyone can pitch in and help you all. I know its been a huge blessing to me to be able to help in this. I think you and Grant are two of the most wonderful people I have ever known.
I hope todays tests goes well and little Elise can nurse soon!
delurking
Date: 2007-05-03 03:50 pm (UTC)no subject
Date: 2007-05-03 03:51 pm (UTC)I hope that Elise continues to improve at such a swift rate. We are keeping you in our thoughts and prayers over here.
Lots and lots of love to you all.
no subject
Date: 2007-05-03 04:01 pm (UTC)Nancy sounds so awesome.
I know what you mean about the tidle wave. I think most of us just keep thinking "how on earth is Tina handling all this". I think most of your friends page is in total shock that things did not work out the way we were all expecting. Its like whaaaaaaaaaa? WHY!?
I think about you quite often during the day and I say a prayer each time. I am lighting my sacred heart candle. I am so thankful you have your mom so that Grant can stay with you. Times like this you need all the love and hugs you can get.
no subject
Date: 2007-05-03 04:04 pm (UTC)no subject
Date: 2007-05-03 04:13 pm (UTC)no subject
Date: 2007-05-03 04:23 pm (UTC)Not nursing her was so hard. I had to wait till she was 11 days old before they okayed her to nurse from the breast. I had a total love hate relationship with the pump. I was glad it was there but it was such a cold replacement for my sweet baby.
You'll all continue to be in my prayers. Much, much love to you all. And congratulations again on your sweet baby.
no subject
Date: 2007-05-03 04:27 pm (UTC)It's really good to have you updating. I'm glad to know you're up and about and on the road to recovery, physically. And it's really good to hear that Elise is doing so well and that she's likely to grow up pretty normally. Lots of prayers coming your way!
no subject
Date: 2007-05-03 04:35 pm (UTC)I'm reading through all of this just now - someone called and told me the short version the morning after your surgery but I have no internet access at home.
Your journey, and your efforts have been so strong and wonderful. I'm very sad about Elise. I know that no matter what happens, you will be a good mother to her, but I really hope she grows out of the seizures and has no lasting damage. This same situation happened to a client my partner had right before I moved out here, and he seems fine now.
I don't even know what to say. I feel like you must be full of tears and I think letting them out wouldn't be such a bad idea. I want you to have your baby with you soon, so badly. I wish I was there to help in some way.
I love you, Poppy
no subject
Date: 2007-05-03 04:39 pm (UTC)no subject
Date: 2007-05-03 05:06 pm (UTC)Tons of thoughts and prayers!
no subject
Date: 2007-05-03 05:36 pm (UTC)Elise is so precious, and I'm praying so hard that there will be no lasting damage, but I know more than anything that even if there is, there is absolutely no better family for her to be a part of, no other family that will love and cherish and value her as much as you all will. She is so beautiful. I can't wait to hear how she grows into her own little personality :)
no subject
Date: 2007-05-03 05:50 pm (UTC)Will definitely keep praying for you.
no subject
Date: 2007-05-03 05:57 pm (UTC)delurking too
Date: 2007-05-03 06:25 pm (UTC)no subject
Date: 2007-05-03 06:28 pm (UTC)I'm so proud of you. Thanks so much for the update.
no subject
Date: 2007-05-03 06:32 pm (UTC)I've been reading your entries to Crystal over the phone. We're both very happy that Elise is doing better.
Love you
no subject
Date: 2007-05-03 06:35 pm (UTC)no subject
Date: 2007-05-03 06:40 pm (UTC)no subject
Date: 2007-05-03 07:01 pm (UTC)no subject
Date: 2007-05-03 07:10 pm (UTC)Both you and your husband love your children with such ferocity, I see it in every post, every little thing you share about them, every little thing you do with and for them. One can only hope to give as much to their child what you give to yours. It's no wonder they are such awesome individuals, each and every one of them. I believe that good things happen to good people. Although there have been a few bumps in your journey, you are being supported and cared for. If there has ever been a family so deserving of happiness and fulfillment, it is yours.
I am rooting for your family, and will continue to read your updates, as I am very excited to see Elise fit perfectly into her family. After this bittersweet period, life back in Florida will begin, and you'll have quite a story to share with Elise when she gets older.
Good Luck and well wishes from my family to yours.
no subject
Date: 2007-05-03 07:39 pm (UTC)no subject
Date: 2007-05-03 08:48 pm (UTC)no subject
Date: 2007-05-03 09:41 pm (UTC)no subject
Date: 2007-05-03 09:45 pm (UTC)**hugs**
I have no great words of wisdom...only my love and compassion to share. To let you know that you are supported and cared about.