Hello all...
Yesterday we had a busy day with Drs appointments. First was Audiology. Serena had a repeat intensive hearing exam in which little probes are attached to three places on her head and little plastic things stuck in her ears...alien adventures pretty much. I stayed for awhile but before she was done it was Edwin's turn, so Daddy stayed with Bean and I went in with Edwin. As mentioned in a previous post, Edwin passed his screen at the NICU, however when Serena's test was redone upon discharge because she referred in her left ear, if was found that she also had VERy mild loss in her right...well considering she passed on her right and still had loss when checked after discharge I requested Edwin be seen. Instead of the intensive test they did a quicker one that doesn't give as much information, but does produce results. Well Edwin failed on both ears, as did Serena this time and last time. Apparently because it was found that both have fluid behind their eardrums, this test will not produce passing results. So we didn't get much information on Edwin other than he has fluid too. As for Serena her hearing improved from last month, and now her left ear if better than her right...go figure. Either way she is hearing well and can hear voices and we are assuming Edwin can as well. We will go back in another month and test for fluid and if it is present they will be referred to a Pedi ENT Dr (ear nose and throat Dr). Hopefully the fluid drains out by then.
After the Audiologist was the Pulmonologist. I told him how much better Edwin was doing with his sats sitting at 97-100 most of the time when awake and asleep. He stated we could discontinue the apnea and brady monitor they have at night, they never really had those spells but it was protocol to send both home with one.
As for Edwin he weighed a whopping 8 pounds 7 ounces and was 19 inches long. Serena weighed 7 pounds 12 ounces and was a little over 19 inches long. According to the pulmonolgist's scale they have gained 2 pounds in a month. They were pleased and so were we.
And the best news was we can now WEAN! He wanted Edwin to wait until next Sat since his last dose of steroids will be this Sat, and we wants him to have a week steroid free before the wean. We will go down by 50ccs every other week as tolerated. I already weaned Serena to 250ccs and she is doing great! Same sats as before the wean....97-100. He said when they get to about 100ccs they will probably be ready to have opportunities to try time without the cannula for small periods throughout the day. We still have a long way to go (probably about 6 months) but it's nice to know we are finally starting. Serena will also be seen by a specialist in Boston for her lack-of cry...the hoarse sounds she makes when crying and sometimes breathing. We hope for the best with that of course.
After the pulomonolgist I came home in fine spirits, it wasn't until I started on the computer that Mommy's meltdown began. I read Holland and Eden's post as I do everytime I am on (as well as all of our other preemie friends) and I totally felt where Billie is coming from. I don't know if it makes me a bad mom, but I can't shake the panic and fear associated with the unknown in terms of Serena and Edwin's longterm prognosis. I want so desperately for them to enjoy life and not suffer with any type of serious disability. I wish I could magically make them well and avoid any of the serious conditions they are at risk for. Well anyway, I did something I probably shouldn't have done...I googled "long term outcomes for 23 weekers." Devastation was everywhere. I stumbled upon a lot of Ms Hellen's posts...HH as I've seen her referred to on eblogger. I read how bravely and intelligently Hallie's Mom stood up to her intensely negative posts. Reading these statisitics and the personal and ethical beliefs and debates surrounding micropreemies crushed my spirits. I feel guilty to say that even looking at my beautiful children did not eradicate my misery. I was overcome with emotion and screamed and balled my eyes out for over an hour. Edwin Sr was in shock of my behavior and tried to soothe me but the only thing that would've made it better would be for someone to tell me Serena and Edwin would be spared any of the issues that were brought up in the stats. Reading the posts from people who are opposed to treating babies born at 23 weeks made me feel a huge sense of guilt. We were presented with the choice to treat or not. But you tell me, as a parent how was I suppose to say I didn't want them to treat when I am hearing there is a chance they'll survive and that NO ONE knows what the future will hold even after their NICU course if complete and they make it home? How could Edwin or I ever live with ourselves if we chose not to treat our twins? Forever we would be haunted by the what ifs, and I know I could never get over that pain. But at the same time what if in choosing to treat, I selfishly sentenced my children to a life of pain and unacceptance? Of course we will accept them, but what about society? The cruelty in which people wrote about people with disabilitis stung me like a thousand needles....burden on society, too expensive, burden on the school system, etc etc etc. I felt so selfish when crying because I wasn't only crying for Serena and Edwin, I was crying for myself. This is brutally honest, and I hope I don't seem like an unloving mother, but I cried for myself because what if Serena and Edwin have severe complications related to their prematurity? I wanted so badly for my children to enjoy things like the prom, going to college, falling in love, getting married, and having children of their own. I know I will love them no matter what, but I can't help but feel a sense of loss when thinking that there is a possibilty that these things may never happen. I want to stay strong and be positive, but the reality is, there are a lot of very educated people out there saying that 23 weeks is just too early to save babies. The NICU we were at brought me statistics of survival and they brought me the 2004 stats in which 2 23 weekers were saved and both survived. I don't know how people like HH could expect that parents, especially when mom is active labor, are expected to weigh all of the options at that emotional and frantic time and make a decision not to treat? I guess she and others made me feel like I made the wrong decision and I was sentencing my children and our family to a life of misery and despair. I know I will not live life like that, but it is hard to think you might have harmed your child by the decisions you made. I know I am going on and on but this is a huge debate in society and I can't believe I am semi-involved in it. I can't imagine life without Serena and Edwin. I guess what is scary is that everything seems so normal now. They are so sweet and so cute and are accomplishing things every day. I just worry that one day the clouds will roll in and we will receive some horrible news. It would be one thing if this happened without our control...say if our children had a genetic disorder or something, but we CHOSE to save them and even though I will never regret it, there are people who think we shouldn't have, and my greatest fear is that Serena and Edwin will agree with those people. Am I horrible?
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5 comments:
Hi Steph!
I know you have no idea of who I am (my sister works at HC with your mom) but wanted to send you some luv since it def. sounds like you need it right now.
I do not think you should be beating yourself up like you are. Granted, I have never been in your situation but I think that you and Edwin made the best decision by saving these 2 beautiful children and I do not think they will ever look down on you or think otherwise. The love that is within your family is more love than a lot of children experience in an entire lifetime. You are amazing people who would do anything for your children and they are going to know that EVERY day of their lives. Chin Up...you can't control what happens in the future (God has everything planned for us) so enjoy every moment as it happens.
God Bless you all!
As a mom of a 24 weeker I can definitely relate to the things that you're feeling. Our kids are what they are and it's really too early to tell what their lives will be like. If I knew at the beginning what my little man would go through in the NICU I'm not sure what choice I would've made, but seeing him now I can't imagine not having him - even if society might not think his life is worth living. We don't know what the future holds, and in a lot of ways that's the hardest part. Hang in there - maybe we'll be the ones to prove the statistics wrong.
Hi Stephanie. I totally know what you are going through. We were presented with the same statistics when Sharon went into labor at 23.0 days and since we were on an all-week, 24/7 vigil to keep the girls inside her, I didn't have time to do any research until well after they were born. And they were so sick those first 2+ weeks that I didn't even do much then. It was really only as Hallie was beginning to get better and after Olivia passed away that I began to try to wrap my head around everything we--and they--had been through. I think that, as parents who have had our kids so prematurely, we need to savor their good moments and do everything we can to give them the best possible chance in the universe. It seems to me from following your blog that you are doing just that. Yes, we need to be realistic about the outcomes, but also need to treat these kids as individuals and advocate on behalf of them to get them the services that will help them. Bean and Champ are both strong, wonderful babies and they are doing well--better than well. They've already defied so many odds. And I can't say that they, or Hallie, won't hit bumps in the road at various points---we are always waiting for the other shoe to drop and each time she accomplishes something amazing (like sitting up on her own) I wonder whether she'll ever be able to do something else (like roll over, vocalize normally, speak, go to college...). I try not to obssess about this too much and instead enjoy her smiles, her coos, her obvious happiness with her life with us. And in the meantime, we have made sure that we got early intervention out here early (even in the face of the utter and complete ineptitude of the social workers in her nicu), we do exercises with her, and we're always willing and ready to contact her docs at the drop of a hat and push for services even when we hit brick walls. Anyway, just hang in there---the kids are doing great, you need to take care of yourself because this does continue to be a bit of a roller coaster, and enjoy them and Edwin Sr.
I just wanted to tell you that I sympathize with your feelings, and remind you that there isn't one right answer to these questions. 23 weeks is very small, and depending where you deliver you will be told different things. I know this all too well, as we were told our 23 week twins had no chance of survival. We were told that 24 weeks was the edge of viability and they didn't make it that far. Believing we had no other choice, we held and loved our babies every minute of their lives and long after they died. I can relate to your agony because that is how I have felt to learn of stories like yours where babies of the same age and weight as mine are alive and at home with their families. It is not easy to live with, but at the same time I also know that babies like yours are the exception and given how easily our babies gave into death I have to believe they were not strong enough to withstand the rigors of the NICU and life outside the womb. It's the only way I have to try and not go crazy.
My point is simply that there are no easy answers and it isn't any easier looking at these questions from the other side. Cherish your babies. Do everything you can to give them the best quality of life possible. And then try to find peace in whatever way you can. Maybe staying away from some preemie blogs and sites out there is a good idea for you. I know that I probably need to stop torturing myself with all of the "what ifs."
I wish you peace and your babies health and happiness.
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