A day in the life of...

[samssugarmomma]

Re: A day in the life of...

September 25, 2007 - 33 weeks, 4 days

Tomorrow is the big day! The MRI is at 8 and we meet with the fetal care center at 12 to go over the results. We both work at the hospital where we are doing the MRI so we'll have to resist the urge to log into the system and pull up the radiology report ourselves. Or not........ The MRI pics are awesome so we will eventually pull them up to print out some pics of little Lilly. I have a few pics from the first MRI for the babybook.

Right now we feel good ...... and nervous. But mostly good. I'll check in as soon as I can to update everyone!

[samssugarmomma]

Re: A day in the life of...

September 27, 2007 - 33 weeks 6 days

Wednesday was the longest freaking day ever! We're still working on processing everything we learned. Today pretty much sucked. I'm still working on writing everything out because keeping this blog has helped tremendously. I just sent this email out to our families:

Hello everyone,

Just another quick update - our MRI results were not what we had hoped them to be. (If that isn't the understatment of the century....) Lilly is fighting hard but her lungs are very, very small. The expected size for her age is 56 mL and the lower end of normal is 36 mL. Lilly's lungs are 12.9 mL. Unfortunately this doesn't look like something that she can survive. We're still taking it all in and will keep everyone updated on her and delivery date and other arrangements.

Love to all,
Sam, Kate, and Natalie

We met with our priest today to figure out what we're supposed to do to plan her funeral. Aren't we too young for this?

I hope to be able to be able to do a real update and post it tomorrow.

Kate

[samssugarmomma]

Re: A day in the life of...

P.S. If anyone has any doubts as to how awesome Kelly is - I called her at 8 this morning to watch Natalie so we could go and meet with our priest at 9:30 today. We thought our meeting was just going to be about the baptism but when we learned it was going to be more than that, we decided we didn't want Natalie to hear about funerals and burials and cremations and whatnot. Thank you so much Kelly! I'm sorry for messing up your day! When this is over, I've got your back any day, any time!

Kate

[samssugarmomma]

Re: A day in the life of...

September 28, 2007 - 34 weeks

I think that Wednesday was probably the worst day of my life yet. I’m sure in a few weeks, it’ll just be the third worst day of my life. We should have known that it was going to be a bad day because it started off messed up. I was supposed to get to the hospital at 7:30 but, of course, we woke up late and I was 15 minutes late. Not too bad. My MRI was supposed to be at 8:00. At 8:45 they took me back to get changed and then they tried to put me in their smallest pediatric MRI scanner. Um….hello. I’m almost 30 and I’m 8.5 months pregnant! I’ve only gained 15 pounds but I’m still not going to fit in your smallest pediatric scanner. My two year old would barely fit in there. Dumbasses. So I had to get dressed again and wait for the next scanner. Forty-five minutes later we finally get started. The fetal radiologist said that I didn’t have to take the valium to make Lilly hold still so I didn’t. Why take more medicine than is necessary? So I thought. I think it scared her. It was so loud. As soon as it started, she started kicking and moving and she didn’t stop for the entire 75 minutes that we were in there. I’m so sorry sweet baby. I thought I was helping you by not drugging you. I didn’t mean for you to get scared. It was around 11 before we were finally finished and we were supposed to meet with the director of the fetal care center at noon. So I went to the cafeteria to wait for Sam to get there. I met up with some of my coworkers while I was waiting – that was nice.

So at noon we arrived at the fetal care center and were shown to our room. The receptionist said that our report was still preliminary but that she would page the doctor. An hour and a half later I went out and learned that he had “just” scrubbed into a surgery that was added onto his schedule. Jackasses. The surgery was supposed to last 2 hours and he would be done around 3. So, rather than continue to sit in our room, we pulled up the preliminary report ourselves and read it. And we decided that it was a crock of shit because how could her lungs have gone from 26 mL six weeks ago to 12.9 mL today. They aren’t supposed to go down. So we decided to go and get some lunch and come back at 3. We came back and were shown to a different room and were told “they’re getting ready to close, he should be here any minute and he has some other appointments scheduled but we’ll try to come and get him to see you first”. Umm….your damned right he is coming to see us first. Since our appointment for NOON was blown off. Jackasses. So at 4:15 he finally comes in and tells us that 12.9 mL is the radiologist’s final estimate of her lung volume. There is another measurement that she was waiting on but it isn’t as accurate. He also told us (which we had already seen in the preliminary report) that there is a problem with her ureter and vagina. There are supposed to be three holes down there and they can’t be sure, but it looks like she only has two – an anus and a vagina/ureter. They think she has an anus but can’t be sure until she is here and we can look. At most there are 2 holes but it is possible that there is only 1. Having only 1 hole would be really, really bad for her because it would increase the chance of getting an infection in her peritoneal dialysis catheter to sky high proportions. The only good news (?) was that her left kidney can still be seen and there was a tiny amount of fluid in her bladder. But none of that matters if your lungs can’t support you.

The lung volume has gone down about 50% in six weeks. So I guess they are likely to get smaller before she gets here. He said that they reason for the decrease is twofold – her abdominal organs are getting bigger, which normally would be good, but as they get bigger, they put pressure on her chest and normally the chest is full of fluid (pressure) and can counteract the pressure from the abdomen. But, since she doesn’t have any fluid there is nothing to counteract the pressure from her organs so they continue to get bigger and push up on her chest cavity. And the fluid is supposed to keep the uterus open but since there isn’t any fluid in the uterus, the walls are pressing down on her and compressing her chest cavity. The uterus pressing on her is also causing her spine to be curved so she probably won’t be able to unfold from the fetal position, even when she comes out. And it is probably causing her face to get smooshed in and maybe some clubbing of her feet. And her limbs will probably be folded up close to her body and she won’t be able to unfold them even when she comes out.

So our next step is to meet with a neonatologist to develop a resuscitation plan. There is some stuff that we could do, but those options will only hurt her physically and/or render her unconscious. It doesn’t sound like any of the options will help her or cure her they are only going to cause her pain and then we’ll have to end up withdrawing care anyway. So why hurt her? Why should the little time she has here be spent in pain or unconscious? It’s just not right. So we have to let her go. And make sure she doesn’t know any pain.

This is just wrong. I always always always thought that she was coming home. I thought it would be hard and that she would be really really really sick and that there might be some times when it was touch and go, but I always thought she was coming home. When this was all over, I thought this would be another case where my parents came over and said this was just another time that I overreacted and didn’t I feel silly now because everything was fine. I thought I’d have to apologize to everyone for worrying and scaring them but look – here she is. Isn’t she perfect? Always. When I read that no one has ever survived this I thought ‘well, that’s not us’. Something must have been wrong with them. The parents weren’t good people. Or they didn’t pray hard enough. Or they didn’t go to the right doctor. Or they didn’t do what their doctor said. Or they were bad parents. That’s not going to happen to us. We’re different. But sadly we aren’t. I’ve done everything I’m supposed to do. I take my shots every day and my million pills everyday and I beg God everyday not to take her and I stay in bed as much as I can and I’ve been so careful about what I eat because I know I shouldn’t gain 70 pounds again. And it doesn’t matter.

Some things that we don’t know are what day she is coming and how much time that she has. Do 12 mL lungs only last a few minutes? Will we get a few hours with her? Does anyone know? But there will be time to find those answers. Even though it won’t change anything for her we won’t deliver her before she is term. We can’t. We’re her parents and we are supposed to take care of her and make sure she gets the best chance possible. Even though we know there is no hope and nothing we can do, we still have hope. If that makes sense. We’re preparing for the worst but still hoping for a miracle.

We met with our priest yesterday and someone from the church is going to help us plan the funeral. We don’t have to do it now, we could wait until after she is here. But, apparently there is a limited number of decisions that we get to make for her and we want to do what we can. We might not get to decide what her first food is, but dammit we’ll decide what songs are sung at her funeral. That is just wrong. How can we be old enough for this? My grandmother is buried here and the cemetery where she is has an infant section. Some time in the next few weeks we’ll go and pick a spot in the infant section or near my grandmother. I think we want her near my grandmother so at least she won’t be alone.

I have no idea what we are going to tell Natalie. She asks about Lilly everyday. “Is she coming out of your tummy today mommy?” When we are in the car, she says “that is where Lilly is going to sit. She isn’t sitting there now, so you can sit there until she comes.” “Those are Lilly’s monkeys and these are my monkeys” (Our sunshades on the windows have monkeys on them.) She goes into her room “There used to be my toys, but I don’t use them anymore. I’m giving them to Lilly.” She pats my tummy and gives it kisses and tells Lilly she loves her. All on her own. What are we going to tell her?

This just isn’t right. I feel so cheated and angry. Everytime I feel her move I burst into tears. My sweet perfect Lilly. We love you so much. You are so happy and safe in there. Stay put baby. You have no idea what is about to happen to you. Can I just stay this way forever?

[samssugarmomma]

Re: A day in the life of...

October 1, 2007 - 34 w, 3 d

*sigh* It is really sinking in for Sam. Or maybe he is finally letting me be strong for him like he has been strong for me these past 8 weeks. It breaks my heart for him to look at me with tears in his eyes and ask "what are we going to do?" I have no doubts that we will make it through this together. We've even talked about how do we survive this together and not let it push us apart? We can look at each other and know that the other person just needs to hear "I know". No matter how much life is sucking right now, I guess that we are lucky that we can talk to each other about how much it sucks.


We have the option to discontinue are twice weekly NSTs and fluid checks and just do weekly doctor appointments with doppler checks. We can't decide what we want to do. We went today and it was absolutely heartbreaking to see her practice her breathing. And then kick the ultrasound tech for poking her.

I'm almost finished with her blanket. I have two more rows to sew together and then I need to figure out how to use a circular knitting needle to do the edges. After I was tired of working on the blanket today, I put it over my belly and Lilly and I took a nap. Well, I tried to nap, she kicked me.

We've decided on the burial plot location I think. Neither one of us can bear to actually go and look at the cemetary but my parents did over the weekend. They said that the infant section is nice so we are just going to go with that. They have a special section right next to the infant section that is just for the parents of the infants so that the parents can be close to their infant. We're going to figure out how to find the money so that we can sign up for that. How knows where we will be living once we are finally done or once we are retired...... Who the hell thinks about this when they are 29? Seriously. It's not like either of us have terminal diseases or anything. But we'll probably be the only people under 30 that already have burial plots. This is so not fair.

[samssugarmomma]

Re: A day in the life of...

October 2, 2007

An entry that isn't horribly depressing:

This was the Joke-of-the-Day on a local radiostation. I've seen this joke several other times and it always touches me:



A professor stood before his philosophy class and had some items in front of him. When the class began, wordlessly, he picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was. So the professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was. The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with a unanimous "yes." The professor then produced two cans of beer from under the table and poured the entire contents into the jar, effectively filling the empty space between the sand. The students laughed. "Now," said the professor, as the laughter subsided, "I want you to recognize that this jar represents your life. The golf balls are the important things, your family, your children, your health, your friends, your favorite passions, things that if everything else was lost and only they remained, your life would still be full. "The pebbles are the other things that matter like your job, your house, your car. The sand is everything else, the small stuff. "If you put the sand into the jar first," he continued, "There is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff, you will never have room for the things that are important to you. Pay attention to the things that are critical to your happiness. Play with your children. Take time to get medical checkups. Take your partner out to dinner. Play another 18. There will always be time to clean the house, and mow the lawn. "Take care of the golf balls first, the things that really matter. Set your priorities. The rest is just sand." One of the students raised her hand and inquired what the beer represented. The professor smiled. "I'm glad you asked. It just goes to show you that no matter how full your life may seem, there's always room for a couple of beers."

[samssugarmomma]

Re: A day in the life of...

October 4, 2007 - 34 w, 6 d

We meet with a neonatologist today to develop our resucitation plan. I'm *sure* he will have an awesome plan to save her. EXIT to ECMO, liquid ventilation, artificial lungs? I'm ready to be awed. Come on. Your stupid motto is "Change the outcome". I'm ready! Lilly is ready! Tell us how you are going to change OUR outcome!

If our situation was different, I would have a totally different perspective on these treatment options. They would sound cool instead of terrifying. The EXIT to ECMO would be pretty neat. In my basic understanding for the EXIT procedure, the mom is under general anest. and the baby is partically delivered via c-section and the cord remains attached. They do a quick check to see how the baby can breathe and if a traditional ventillator will work. If not, they hook them up to ECMO and then finish the delivery. ECMO is an artifical way to oxygenate/de-oxygenate the blood. There is a catheter placed on each side of the neck. On one side, the blood comes out and goes to a machine that acts like an artificial lung and then the blood gets pumped back into the body on the other side of the neck. Wouldn't it be awesome if she could do that until she had a chance to re-grow her own lungs? Unfortunately its not meant for long term use - I think it is usually only used for 2 weeks to a month. I think the 3 month survival rate is only 33% and I don't think she could re-grow her lungs in only 3 months. And you have to be pretty sedated the entire time. And on blood thinners and there are a ton of other risks.
Or liquid ventilation - filing the lungs with fluid and keeping it under pressure. Somehow this helps to stimulate lung growth and you are on a ventilator. Wouldn't that be cool? If only she had enough lungs for a ventilator to work.
Or a lung transplant. I think you have to be older (10 or 12?) for that.


We are also meeting with my OB so we might come home with a delivery date. There is no way in hell that I am picking the date. They can pick it or we can pull it out of a hat. I'm out. This is one decision that I refuse to participate in.

[samssugarmomma]

Re: A day in the life of...

October 5, 2007 - 35 w, 2 d

We met with the neonatologist on Thursday afternoon. We knew what he was going to say - that her lungs are just to small and there is nothing that can be done to help her. The most we can do is enjoy the time we get with her and make sure that she's comfortable. And for that I wanted to hate him. I really really did. But I can't because he was so incredibly nice. The very first thing that he did was ask if "the baby" had a name and for our entire conversation he referred to her as Lilly, not "the baby". As many doctors as we have met with, I don't remember anyone else doing that. And he was very nice and gentle about my crazy plans to save her.

It's impossible to know how much time we'll be blessed with having with her. Hopefully she'll make it out of the delivery room so that she can meet Natalie.

And we've picked a week - October 15th. How fitting - http://www.october15th.com/. The peri group that I'm going to has 7 docs and there are 2 that I really really like. We're just going to see which day one of those two are doing deliveries and do it that day. Thats as much of picking that I'm willing to do.

We met with our peri on Thursday too. She was very encouraging that we could do a VBAC if I wanted to. Um..... no. First, I am absolutely terrified of losing my uterus. The risk of rupture is small. But I'm not really in the mood to play an odds game. Do you know the chances of Lilly have bilateral multicystic renal dysplasia? 1 in 800,000 is what I think I read. Having it in one kidney is only 1 in 2-3,000. Second, at least with a c-section she'll be born alive - or it is more likely to be born alive - unless she compresses her cord between now and then. After all we've been through, we all deserve at least a few minutes to meet her. I do realize that there are risks with a c-section......I just can't do a VBAC. I can't.

We've decided that after the funeral that we are going to go away for a few days. Sam found a nearby state park that has some cabins - http://www.dnr.state.oh.us/tabid/745/Default.aspx. While we are gone some of friends and our parents are going to take care of everything that we've done to get ready for Lilly. Maybe we'll regret not doing it ourselves but Natalie goes in her room all of the time and points to the crib and the toys and the clothes and its just.....too much....too hard. When Sam suggested that we go away for a few days I asked him if he was taking us into the woods so that he could off us. And if he was, we'd better take the puppies too because we promised them that we'd never abandon them. He laughed and said that he's not planning to "off" us but that he's glad to know that I have such confidence in his mental stability.


We planned her funeral on Friday. This is just surreal. Sometimes I just want to scream for help because I'm living someone else's life. We were sitting on the couch trying to figure out when to take Natalie to get her picture taken in her Halloween costume and then 'Whoops! Look at the time. It's time to go to the church to plan Lilly's funeral.' I've only ever been to one other funeral.

[samssugarmomma]

Re: A day in the life of...

October 9, 2007 - 35 w, 4 d

One more thing crossed off - we met with the funeral director today. That has got to be a hard job. Afterwards Sam commented that planning a wedding is totally different from planning a funeral. For the wedding, the bride & groom have to track all of the little details themselves but for a funeral everyone takes care of the little details for you. Who will print the programs? Oh - just give all of the info to the church and they will take care of it. How will the cemetary know when we'll get there? Oh - we'll take care of it. Where is there a good florist - Not to worry, we'll take care of the flowers. It's nice to be done because I can't focus for anything for more than a few minutes at a time.



I feel sorry for my husband. Even though there is no reason for me to keep resting I'm still housebound. I just can't face the real world - not even our friends. (Which leads me to think there is might be some depression going on here - but - DUH KATE! ............ I think I'm entitled to a little depression though. I'll have to add that to the list of questions for the doctor on Thursday.) He still has to go to work and everyone he works with knew we were expecting and most people know that Lilly is sick. Almost everyday he runs into someone who asks how things are going. And so everyday he has to retell where we are. I can't believe that he hasn't cracked yet. And some of the responses that he's gotten are ...... The best - and one that most completely summarizes everything is - "That F#*&-ing sucks man!" No kidding. It's weird. No one knows what to say to us. That's ok. We don't know what to say either. I just feel bad for him. Most days he comes home and asks me 'How long are we going to be known as the people with the dead baby? How long are people going to look at us with pity in their eyes?'. I don't know love. But, you know what, some day, we'll all move on and people will stop asking , and then we'll probably be hurt because we'll think that they've forgotten. It's a double edged sword and there is no right answer.

[samssugarmomma]

Re: A day in the life of...

October 14, 2007

We have a date! Lilly will be here on Friday October 19 at 1:30. No date for the funeral yet (which is causing some fun family drama (sorry if the date (or lack thereof) of our daughter's funeral isn't convenient for *you* we'll try to plan better next time )


More later........

[samssugarmomma]

Re: A day in the life of...

October 19, 2007 - 37 weeks - The BIG DAY!!!

We get to finally meet Lilly today! If you had told me a month ago that we'd be excited today (and not just incredibly terrrified and sad) I never would have believed it. But we are! Last night we laid in bed and wondered if she'd have hair or if she'd have pointy ears like Natalie or really long toes like Natalie did. Or if she will look completely different. Even if we only get to meet her for a few minutes I'm really excited. I refuse to let today be just a sad day. We're going to be parents again!


Our surgery starts at 1:30. Any good vibes around then would be appreciated! I'll do an update as soon as I can. Thank you to everyone who has prayed with us and sent us good vibes over the past 3 months. Even if we only get a few minutes together, we've still made a miracle happen.

Kate

[samssugarmomma]

Re: A day in the life of...

October 24, 2007 - 5 DAYS OLD !!!!!!!!!!!!!!!!!!!!!!


Just wanted to give a quick upate…..


We’re home!! Lilly arrived on Friday, 10/19 at 1:42pm. Weighing in at 5.22 lbs and 18 inches. She came out fighting and hasn’t stopped. She’s given us a few scares – they weren’t sure that she was going to make it out of the delivery room alive and the priest was paged and ran in to do her baptism in the delivery room. But, she made it out and she’s fighting hard. And we thought we were going to loose her on Saturday night as well.

She’s stuck in a gray area – her lungs aren’t small enough to kill her but they aren’t big enough to support her through dialysis. So, we are home in hospice care. We were so gungho about doing dialysis if it was an option, but after meeting her and seeing how hard she is working just to breathe, we've decided that the road to dialysis and a transplant would just be too long and hard and painful for her. The only guarantee with dialysis would be pain - no guarantee that it would help or that it would work long enough for her to grow big enough for a transplant.

She is such an angel – very happy and easy going. And Natalie is the proudest big sister ever. And all of my worries about deformities and her not being able to move her limbs were for nothing. She looks like a normal preemie (even though she was 37 weeks she still has some preemie characteristics) and she can move all limbs!

We aren’t sure how long we are going to get with her so we are cherishing every hour. They say it could be a week or a month….we just thank God every night for the day and pray that we get another day with her.

I don’t have the patience to try to figure out how to post pictures right now but I’ll try to post a few soon.

[samssugarmomma]

Re: A day in the life of...

October 28, 2007 - 9 Days Old!!

(This entry is probably totally random and incoherent because I'm not getting much sleep these days)


Holy cow we've made it 9 days! Woo Hoo! Go Lilly!!!!!! AND even better (just as good?) news - she's peeing!!! Not a lot - but she's had 3 good pees today. She had a few good pees on Friday and Saturday too. I think Sam actually got peed on on Saturday.

Holy cow this is so much fun, but so much work! I'd forgotten how much laundry a newborn creates. NO complaints here, though. I love all of it!! The getting up every three hours. The endless laundry. The spitup. The crying. The pumping. The stiff shoulders from carrying around a baby all day. The 2 year old jumping on the bed and almost crushing her sister. Bring it on!!!

I can't imagine how other moms do it though. We are both home full time (Sam is off until the end of November because of our situation) and we are both working constantly. One of them always needs to be fed or entertained or the dogs just made a mess of muddy footprints. How on Earth would I do this if he'd already gone back to work?


Lilly doesn't even have any "special needs" despite how sick she is. She's on oxygen via a nasal cannula - so she can't go very far from her oxygen machine, but other than that she is "normal". She's bottle feeding breast milk (I accidentially pulled out her NG tube and since she is interested in using a bottle we are going to hold off on putting it back in until she doesn't have the energy/desire to bottle feed anymore) and she acts like a "normal" baby - awake every few hours to look around and eat and get changed and the out for a few hours. And her color is awesome. She is a nice and healthy pink. And her breathing has slowed down a lot. In the hospital, her resting rate was in the 80s even when she was relaxed and sleeping. "Normal" babies resting rate is between 30 and 60 I think. Last time that I checked she was in the 40s during her milk-buzz induced nap this afternoon. What does this mean? I have no idea.......are her lungs growing? Has her body figured out how to compensate for her tiny lungs? Does she have more kidney function that they've told us? What does that mean? How long does she have? More than a few weeks? More than a month? No one seems to have any answers for us either....... We're walking on a path of faith and hope not science.



We created a carepage and I've posted some photos there. You have to create an account to see them - but it's free to join. The webpage is http://www.carepages.com. The name of her page is LillyBeanDelaune.

[samssugarmomma]

Re: A day in the life of...

October 29, 2007 - 10 days old!


10 Days Old today and three small pees so far. We don't know what that means. We were told that she would never make urine and now she is. What does it mean?? Does it change anything for her prognosis? Are we doing the right thing?

The weekend that Lilly was born the attending neonatologist kept coming to our room to check on her and kept repeating how amazed he was about how she was doing. "Just amazing" he kept saying. He also commented on how it was great that we got this time with her - but how it was going to make it harder because in the end she is still going to die. And that the time with her, while nice to have, was going to make it harder because we were just going to keep getting more attached to her. At the time, I thought that was cruel. How can we get MORE attached to her? I've loved the heck out of her since I found out about her back in March. Why would it hurt MORE to lose her at 10 days than it would at 1 day? Why would it hurt more to lose her after 1 month that after 1 year or 10 years? But, in a way, I see what he was saying. We are having so much fun with her. We truly are. Seeing the world through her eyes and Natalie's eyes is so much fun. But it is so hard to push her prognosis out of our minds with each new memory. So hard not to wonder - was that the last time she'll open her eyes? The last time I'll change her diaper? Her last time outside? Her last time to go down the slide outside? Are we doing enough? Have we shown her enough life? Enought love? Have I given her enough kisses? It's not like we have a "list of things we must do before Lilly dies" - we're spending our days living, playing and having fun. It's just hard not to just hold her sometimes and smell her sweet baby smell and not bawl. I mourn for the things they say she'll never have or do. Will she be here in two days for Halloween? She's not supposed to have a Thanksgiving or a Christmas or see the first snowfall of the year. There isn't supposed to be a first tooth or a first birthday party.

This isn't fair. We aren't supposed to have to make these types of decisions about our children. Our parents - yes - yes we are supposed to outlive them and make end of life decisions for them. But not our babies. I want to go back to the easy decisions. Should we cloth diaper or use disposables? Breastfeed or bottle feed? Spank or not? Public school or private? Violin lessons or piano? Can't we go back to those and not this? This is too hard. I'm not strong enough for this. Watch her die naturally or watch her die on dialysis? Let her go or try to save her? How hard to we push her to fight? How do we bear the burden of holding her tiny life in our hands?

I hope this doesn't sound like I'm giving up on her. I'm not. I have faith in her. Faith in God that he has a plan for her. I just hope and pray that his plan is for her to be with us for years and years and not days. It's just hard to keep hoping. Hard to keep the faith when doctor after doctor after doctor keeps telling you that your baby is doomed.

[samssugarmomma]

Re: A day in the life of...

November 19, 2007


It's been a month since Lilly's birth. *Big Fat Sigh* What an insane month!


First off - I'd like to sincerely thank everyone for all of your thoughts, prayers, kind words, and hugs over the past few months and for your continued thoughts and prayers. We would not be getting through this without everyone's support - both emotional, physical, and financial. Kelly brought me an envelope a few weeks ago and Sam and I just opened it a few days ago. When we opened it we were . I can not tell you how much the contents mean to us! We are so lucky to be friends with such amazing, kind, and generous people! The thank you notes were mailed on Saturday and we cashed the checks today. We are putting the contents towards Lilly's headstone. It should arrive in 6 - 8 weeks and depending on the weather it will go in the ground once it comes in or once the ground thaws. I'll post a picture when it does.

Secondly - thank you for all of the gifts that we've received! I mailed out those thank you notes on Saturday as well. If you sent us something and don't get your note in the next few days - please accept my sincere apology and please PM me. As you can imagine our house has been turned upside down over the past few months and my bedside filing system wasn't the greatest!



I can't believe it has been a month. A month with the best 15 days of my life! And then 15ish days of the most surreal life imaginable. We've joined a club that shouldn't exisit. We bounce from functioning only because we have another life that is dependent on us to a paralyzing grief when she doesn't need us. I think Sam said it best - It would be better if it *just* felt like our hearts have been ripped from our chests. Then it would only hurt one time and then we could move on and heal. Instead, it's like our hearts are being ripped out with each and every beat. The pain just keeps coming like waves - over and ove and over and over. They say that with time we'll heal some and the wound won't be so raw. Time heals all wounds, right? And the pain doesn't go away but gets better. We'll see.........
There is a grieving parents support group that meets once a month at the hospital. Next week we go for the first time.

This is so incredibly hard. In my head, I know that I did everything that I could. In my head, my body did everything right. In my head, I did what I could. Each time a doctor told me there was nothing we could do, I mentally gave them the finger and found another one. And another. And another. Until there were none left to ask. In my head, this isn't my fault.

But in my heart, in my heart - I've failed her.

*to be continued* have to go to the doctor......