A day in the life of...

[samssugarmomma]

July 6, 2007

I love our/my new car! I'd forgotten how much I miss driving a stick. I feel like I'm zipping around in my old Corolla again. Only this time, I can fit five carseats behind me!!

:stars:

[samssugarmomma]

July 12, 2007

We've had two episodes where DD looks at us and says "i have to go potty" and then proceeds to drop her shorts, remove her diaper, and sit herself on her potty chair and go pee. :rah: And then she practices wiping her bottom with the entire roll of tp.

We haven't even been working on potty training other than to ask her every now and then if she wants to sit on the potty and last week I told her about "big girl panties" and that we would go and buy some soon.

I have no idea what to do next. She is not waking up dry from naps or at night so I don't know if she is really ready or not. Ahh! I guess I'll start researching the cloth equivalent of a pull-up.

She's not even 2.5 yet. I'm not ready for potty training! How do I stop this (kidding)? Where did my baby go?

[samssugarmomma]

July 12, 2007

So I just ordered two of these: http://www.nopins4baby.com/store/catalo ... egory%3D12 to see how we like them.

[samssugarmomma]

July 26, 2007

Our new windows are ready! The installers are coming on Monday and Tuesday to put them in. I am beyond excited! No more cranking the windows open and closed all of the time! ~Movin' on Up~

[samssugarmomma]

August 4, 2007

Crap. Crap. Crap.

One of my worst fears has come true. Not only am I on bedrest for the duration of this pregnancy, I'm in the HOSPITAL on bedrest and getting IV fluids. And it gets worse!

Shit. Shit. Shit.

Because of the Fragmin, I'm considered high risk and I went for an ultrasound on Thursday to check the blood flow in the placenta and cord and whatnot. As they were checking the amount of amniotic fluid, I could tell that something was wrong. My measureable amount was 6. So, I was immediately admitted to the hospital for IV fluids. A second check on Friday morning showed that I went from 6 to basically none so I was transferred to a hospital with a level III NICU.

Shit. Shit. Shit.

The hope is that I make it to 34 weeks.

If they can get my fluid up and keep it up, I MIGHT get to go home, but even if I do, I'll be on bedrest. And it's not sounding likely that I'll get to go home.

The current plan is to do biophysical profiling twice a week and to check the baby's growth in 2 weeks. If she's grown, she gets to stay put. If she hasn't she gets to come out.

Can I say shit again?

Thank God we live in the same town as my parents and thank God my MIL doesn't work! My parents have been helping out with DD since Thursday (doesn't it figure that Sam was on call that day?) and are going to continue to help next week and beyond. My mom is going to come to our house every day at 5:30am when Sam leaves and take DD to school and bring her home and keep her until he gets home. MIL is coming next Sunday to stay and take care of DD and the house until I (and the baby?) come home.

Prayers and kind thoughts are welcome!

[samssugarmomma]

August 9, 2007 – 26 weeks 6 days

So, it’s been a week. Medically, here is where we are – I’m being treated as if my water has broken, even though they can’t prove it. I received the 2 shots to mature her lungs. Making it 48 hours from those was our first goal. Yay we met that! I’ve finished a course of IV antibiotics and I’m working on finishing a course of orals. I think that was our second goal. On Monday we did another BPP and the fluid was pretty much the same – around 1. While I was there, my admitting doctor came in and said that she had thought about doing an amnio to check for an infection, but the only pocket of fluid that they could find was too small and it was right by the face so it wasn’t a good idea. I about had a heart attack because up until then, there had been no mention of an amnio. Since she’s moving around in there and her heart rate looks good, the likelihood of an infection in there is small. Pshew! I was not prepared for an amnio.

I had a fetal MRI on Tuesday to look at the kidneys and the placenta. No results yet. The person that looks at them here is on vacation and her backup looked at them and said ‘I think they are fine, but I’m not expert at looking at fetal images.’ Awesome. The images were sent over to Children’s to an urologist. The usual urologist they consult is on vacation and her backup doesn’t want to render an opinion. Awesome. So, the images were sent over to a radiologist, also at Children’s. No word yet. The perinatologist that I saw this morning did say that we have a good chance of the kidneys being fine because they are usually fine – it’s just frustrating that they can’t get a good image of both of them on the ultrasound. But, no point in worrying about it now because the odds are that they are fine.

I had another BPP this morning. The fluid was a0.8. She passed everything but the measurement for fluid. It took forever to get the breathing measurement. (To pass, she had to breathe for 30 seconds.) She finally passed by having the hiccups. It was much harder to see her today than it was on Monday.

I also had a fetal fibronectin (spelling?) (fFN) test this week that came back negative.
That’s a good sign I guess.

The plan is to do daily NSTs and bi weekly BPPs to check the fluid and to check for growth every two weeks. The next BPP to check for fluid is Monday and then another BPP to check for growth will be on Thursday. If she’s grown appropriately, she gets to stay put. Grow baby grow!

I can’t even talk about how we are emotionally. I think I bounce between heartbreak and pushing it from my mind.






August 10, 2007 - 27 Weeks 0 days

Well damn. We’ve gone from ‘No use worrying about the kidneys right now’ to both kidneys are small, one kidney is significantly smaller than the other, both kidneys have cysts in them, and the problems with the kidneys are probably the reason why there is no fluid. So I’m no longer being treated as if my water has broken. No more IV but I still have the needle thing in my hand.

We don’t have a prognosis yet. Her lungs are right on target for her size and her weight is appropriate for her age. We can’t know if her lungs will keep growing since she doesn’t have much fluid to breathe in or if she will out grow her lungs. We can’t know if she’ll gain enough weight so that she could even be considered for dialysis. I think she has to double her weight to be considered for dialysis. But that doesn’t matter if her lungs can’t support her. If she comes out and she doesn’t weigh enough, I think we can hope that her lungs can support her and she can get by long enough until she is big enough for dialysis. Or a transplant.

I’m supposed to get a day pass to go over to Children’s to meet with a urologist, nephrologists and neonatologist to talk about outcomes in the next 7- 10 days.

I can also consider if I want to stay here and continue with daily NSTs or if I want to go home and be monitored weekly as an outpatient.

The next growth check is in one week and the next MRI is at 32 weeks.

I can’t think about this anymore.



August 11, 2007 – 27 Weeks 1 day

I don’t know that I can even process or describe the emotions that I’ve gone through in the past few days. No prognosis yet. The range could be anything from stillbirth to death within hours of birth to finding a match for a transplant. We are supposed to meet with a team of fetal specialists in the next week or so. The reality is that they can only discuss hypotheticals with us at this point and get a feel for how aggressive or conservative we want to be. We won’t be able to make a plan until she is here and we know how strong she is and how much function she has in her lungs and kidney(s). Our new goal is to get to 37 -38 weeks and it doesn’t sound like there is a reason why we shouldn’t make it that far.

At this point there is nothing that can be done but wait and pray, so I’m headed home on Monday. I feel so safe here but there is no medical reason to stay. There really is no medical reason why I can’t go back to life as usual – how do you do that? Our future is weekly NSTs and BPPs, checking for growth every 2 – 3 weeks and another MRI at 32 – 34 weeks.

Sam’s mom is still coming and I’m not sure when / if I’ll return to work for a few weeks. There’s no medical reason for bed rest or to take is easy but at this point it makes us feel like we’re doing something

[samssugarmomma]

August 14, 2007 - 27 weeks 4 days

So, I'm home.

They did another fluid check on Monday and it has improved! We went from 0.8 on Thursday to 1.5 on Monday. Yay! I know they said that bed rest wasn't helping, but I feel that it has. Maybe it would have gone up anyway but.......

I was sent home on bedrest with bathroom and shower privileges. So far it hasn't been too bad thanks to my MIL being her to look after Natalie and take care of things around the house.

I'm not even that bored yet.

I've made all of my appointments for the next 6 weeks. Twice weekly NSTs and AFIs and an appointment with the peri next week. Still no word on the meeting with the fetal care center but it should be next week.


~~~~~

I think I'm no longer allowed to complain about residency. At least for a while. When I was first put in the hospital Sam notified one of the chiefs and they have been nothing but supportive. When we first thought she would be delivered sooner rather than later he was told to just let them know what he needed as far as time off, etc. The PD even called him to see how things were going and to ask if he needed to take some time off now or wait or whatnot. And they sent me flowers in the hospital. Then on Friday I was really, really upset about the news and the fellow that he was on with let him leave (in the middle of his call nightl!!) and come to visit with me for 2 hours. And his fellow tonight took his pager for an hour so he could eat his dinner and change from his clinic clothes to scrubs. This has really been tough on him as he is in the NICU at childrens - everyday his patients are kids that could be ours - Really, really sick preemies. I have no idea how he goes to work every day because when I was asked if I wanted to see the NICU my response was to burst into tears.


~~~~~~

On a happier note, tomorrow is my birthday and I'm turning 29.

[samssugarmomma]

August 16, 2007 - 28 weeks

I have what we think is great news! The fluid has gone from 1.5 on Monday to 2.5 yesterday! :rah: And her NST looked great too. They did have to stimulate her, which I thought was unnecessary, but the nurse was very pleased with the results.

We see the doctor on Monday and I hope I can convince her to do another growth check next week.

~~~~~

My birthday was very nice and I got exactly what I was hoping for. I taught myself to knit while I was in the hospital and I'd like to make a baby blanket. I got a pattern and enough yarn to make a nice sized blanket. I just need some smaller needles and I'm ready to get started.

~~~~~

Last night I woke up and DH and I were holding hands in our sleep. :mydoc:

[samssugarmomma]

August 24, 2007 - 29 weeks even

So here are our stats for this week:
The growth check on Monday showed that she is right on track. She measured 28 weeks 3 days and I think I was 28 weeks 4 days. And she was practicing breathing the entire time. And she's put on weight! She went from ~800 grams to ~1100 grams. Almost enough for dialysis if she needs it.
Fluid on Monday was 1.7 cm. Fluid on Thursday was 1.4 cm.
Um....we're moving in the wrong direction Lilly! Pee!


We've decided on a name - Lillian (Lilly) Elizabeth. I keep wondering if we need it to be something tougher like Butch or Rock....A girl named Butch can't die, right?

Our meeting with her fetal care team is supposed to be next week. They've added someone from transplant to the list. When the nurse called me to tell me that she was setting it up she said something like "I hear that things are going better for you and your baby. At first it didn't sound like she was going to make it......That didn't come out right, but you know what I'm saying right?" Um....ok....sure. You work in the FETAL CARE CENTER you idiot! With terrified families and sick babies that are fighting for their lives! How freakin' clueless are you? Jackass.

I think the hardest part right now is that Sam and I both feel like we are going through this alone. We have tons of family and friends that are praying for us and asking what do we need, what can they do to help. I think that right now, we just need time with each other. Since we got the diagnosis we've had maybe an hour or two alone together. And most of that time is spent picking fights with each other because of the stress or talking logistics - this bill needs to get paid, my next dr. appt is on X day at X time, can you take me or do I need to find someone else to take me, this needs to be done around the house and only you can do it....or something like that. We haven't actually talked to each other about how we feel or how scared we are.

Our DD is dealing with all of the changes by crying out in her sleep and clinging to Daddy when he is home. I wake up every night to cries of "No No NO NO NO NO NO! and I don't want to!" in her sleep. And then she cries for mommy and daddy and wakes herself up. Nice.

The potty training is going remarkably well though. She's still in diapers at night, but she is totally in "big girl panties" all day even during naps. And we had some pooping in the potty all by herself this week. I don't know how to make the transition to no diapers at night. She is still waking up wet because it's been so hot, we haven't wanted to limit her water intake at night. Maybe we'll focus on staying dry during the day for a few more weeks before we move onto nighttime.

[samssugarmomma]

August 31, 2007 - 30 weeks 0 days

We've made it 4 weeks with severly low fluid. Go Lilly! Her movements are so strong and getting stronder and all over the place. She can make my entire belly shake! Its hard to believe that she has no room to move in there and that she'll be sick when she gets here.

We had our meeting with her fetal care team on Monday. I've tried all week to write about it but I just can't write the details. Everyone there was awesome and we were treated very, very well. And they were so open to answering all of our questions. All of this time, I've just thought that if we can *get* to dialysis that - it wouldn't be easy - but that it would ...... save her.....maybe? I knew that dialysis wouldn't be a cakewalk but I didn't know it would be so scary! The same for the transplant. How the hell are we going to get through this? If we are "lucky" enough to get that far.

We are not giving up hope, but the bottom line is that what we have is very rare and has been 100% fatal in all previous cases. Screw that! Someone has to be the first one to survive, right? Even if faith and hope are the only things that we have in our corner, we have two very powerful forces in our corner!

We're going to do another MRI at 34 weeks to check her lung size and to see what's changed in the left kidney. Show 'em how much you can grow Lilly!

[samssugarmomma]

September 6, 2007 - 30 weeks 6 days

The rollercoaster continues. Before I forget, our last few fluid readings:
0.7 last Tuesday
0 last Friday
0 on Tuesday

The growth check on Tuesday showed that she's put on a few ounces - up to 2 lbs 13 oz and that she is only a little behind sizewise - she measured 29 weeks 3 days (I was 30 weeks 4 days).

The thing that I don't get is that everytime we see her on the ultrasound, she is breathing. What is she breathing if there is nothing there? And does that help us at all? Will she be stuck with 26 week old lungs in a 35 or 36 week old body? And why is she squirming so much? How is there room to move? It's not fair that everything feels so normal. The backaches. The getting up to pee every 2 hours. The cravings. My belly is continuing to grow. In a way, I'm glad that I'm stuck at home so that I don't have to be around strangers asking what should be exciting questions (when are you due? are you excited? what are you having?).

We ride the rollercoaster of emotions. Anger, disappointment, helplessness, hope, hopelessness. And just a desire for this to be over. To just move on to whatever we are moving on to. And then guilt. The day she is born might very well be the day she dies. So I'm willing her life to end?

I keep coming back to hope and faith. I know that God has a plan for her. Most people here know that we use NFP and while her chart isn't our most complete chart, I had no signs of fertility the days before or the days after we conceived her. I've always thought shes here because God has a plan for her. And she should never had had 2 normal looking kidneys at 20/21 weeks. At least from how they explained how they develop and from what I've read. But sometimes I'm scared. Is his plan for her to answer the question "Can we have more than one?". Is the answer "No" and this is how we know? But I really don't think that is how He answers questions.

It helps to write some of this out. I wish I was a better writer. I look forward to the days when I have happier things to write about.

[samssugarmomma]

September 13, 2007 - 31 weeks, 6 days

Nothing new to report. Now that we've hit 0 cm of amniotic fluid, we've become much more relaxed about the fluid checks. I used to worry about them constantly. But honestly at this point, what can an ultrasound show us that is worse than having no amniotic fluid? I don't think that the ultrasounds can get worse (save for showing that her cord has been compressed and she's passed away). But we mostly rely on kick counts and the NSTs for that. We couldn't see her profile today because she wouldn't turn her head. I hope that her face isn't getting squished. I've looked at some pictures of Potter faces. We saw her feet and it doesn't look like they've become clubbed....yet.

But the MRI in two weeks. Now that is something to be feared. Please, let all of the other organs look normal. We don't want to be a syndrome. Syndrome = bad bad bad. Please let some miracle have occured and let the lungs have grown. Just a little? And it would be nice if we could still see the left kidney. Although we know it isn't working since we are at 0 cm. It would still be nice if it was still there. Why? I don't know. It just would be. I had to take a Valium before the last MRI to help keep the baby still. Umm...can I just have a prescription and take them as needed until this is over? Or how about a coma? Can you just put me in a coma until, say, January?

I saw my OB last week and I just love her. She is very reassuring and I always leave thinking that perhaps we will get through this and perhaps we will be bringing her home eventually. She admits that she doesn't have all of the answers - but - what does it mean that she is always breathing? What does it mean that she has dance party USA in there every day? What does it mean? Well i- we'll have to wait and see. But, it doesn't mean anything *bad* - these are only good signs.

We have another growth check next week. Monday I think. I think its hard to put much stock in them now. No fluid = nothing for the waves to bounce off of = its not easy to get accurate measurements. But, we won't turn down the chance to watch her wiggle and move for 30 - 45 minutes.

Sam started working on her room again. We were in the middle of painting it when I was put in the hospital and we got her diagnosis. We've been wrestling with whether to finish it or not. Stopping feels like we're giving up on her. Continuing means the possibility of coming home empty handed and having to take it all down. I think if it comes to that we'll find the money to pay someone to do it. Since I can't go upstairs, he has been taking pictures of the progress and bringing them down to me. Today he and Natalie put the crib together. I love hearing Natalie say "Lilly". Its like "Wiwwy".

[samssugarmomma]

Re: A day in the life of...

September 14, 2007 -

My daughter cracks me up. Hard boiled eggs = boiling eggs. Today for breakfast we made boiling eggs and she was running through the house shouting and jumping in her excitement to be eating boiling eggs.

Tonight for dinner we had tilapia. She looks up from her plate and asks "Do I like fish mommy?" "Yes, sweetie, you love fish." She takes a bite. "MMMMM. You make good fish daddy." Not sure why that is funny but it made me laugh.

[samssugarmomma]

Re: A day in the life of...

September 20, 2007 – 32 weeks, 6 days


First the good news – Lilly has grown (up to 4 lbs 1 oz) and today she had fluid in both her stomach AND her bladder. There was no fluid in either one 2 weeks ago so we thought that we had lost the left kidney as well. I’m going to email her urologist to check, but I’m pretty sure that the only way to get fluid in the bladder is through the kidney, so maybe we are still squeaking some function out of it. Not enough to increase the amount of amniotic fluid, but maybe enough so that she won’t have to have surgery right away to have a dialysis port put in. When we first met with her urologist he said that if she is born with absolutely no kidney function then as soon as her cord is cut the clock starts ticking and we have three days to get her stable enough to have surgery to put in a dialysis port and a feeding tube. Perhaps if we have *some* kidney function she won’t have to have surgery quite that soon. I really don’t want to start peritoneal dialysis right away. Can’t we have a few “normal” days before we have to start that?

Her weight puts her in the 33% for her age. My OB was happy with that and said that is totally appropriate for her situation. He said that her abdominal circumference was appropriate for her situation as well. Her measurements were a little behind – averaging 31 weeks, 4 days but again, appropriate.

I got an Rx for one valium (for her, not for me) to take before the MRI next week. I just want Wednesday to come and be over with. At least then we’ll have some idea of how much respiratory support she will need. I hope they can tell us that. It would suck to go into the delivery the way we are now. Right now its kind of like. Hmm…we don’t know. She could live for a few hours. She could live for a few days. She could go home and if luck prevails, need a transplant in nine months.

I’ve found two organizations that have photographers that will come and take pictures of children that are born sick or terminally ill. They are the American Child Photographers Charity Guild (thank you Makai!!) http://www.acpcg.com/dedication.htm and Now I Lay Me Down to Sleep http://nowilaymedowntosleep.org/start.php. (Do not click on these links if you don’t want to ball your eyes out.) Through the ACPCG I found a photographer that can come and take some pictures for us. It makes me so incredibly sad to think that we will need something like this, but in a way, it is comforting to know that we’ll have something to remember her by if things don’t go the way we want. NILMDTS has some good info on their website– questions that we had but didn’t know where to go to ask.

I’ve also set up a meeting with our priest. We’re meeting next week after we get the results for the MRI to talk about stuff and when to do Lilly’s baptism.




We’ve obviously never been in a situation like this and my husband’s way to cope is by doing projects around the house. Saturday Sam woke up and decided to paint the office. The new color is awesome but afterwards we decided that the light in there wasn’t bright enough so he went to the store and got a new ceiling fan/light. And some treads to put on the stairs to lead down to the basement since the stairs are steep and slippery. And some wood to build a ledge above the desk. And some molding to do something (who knows what) in the dining room. And that is just the stuff I know about since I’m limited to staying the first floor of our house. I think that he’s decided to paint our downstairs bathroom as well.



On a side note – things to NOT say to a pregnant woman:
DH: Whoa! Your belly is huge! Imagine how big you’d be if you actually had some fluid in there.
Me: (throws a pen at DH)
DH: Ha. Ha. You missed. And you can’t chase me.
Have your fun dear. You have to come to bed sometime. I’ll wait. 8 )

[samssugarmomma]

Re: A day in the life of...

September 23, 2007

Do you ever have those moments where you're like "Wow! I am a parent. How did the heck did that happen?" I had one on Friday.

During all of my researching I read somewhere that people with kidney failure - or maybe it is just kidney problems - can't usually get life insurance as adults. So, I started looking into policies that we could get now that will guarantee that Lilly will at least have a little bit of life insurance when she is an adult. On Friday we signed Sam up for a life insurance policy that has a child rider on it that guarantees to cover all of our children up to age 26 and then guarantees that they can get up to 5X what we have on them no matter what illnesses they have. Of course they can't say how much the premiums will be for said coverage but we'll be done with training by then (I hope, ha ha ha) so we'll cover it until she can.


I ventured out of the house for my first non-doctors appointment on Saturday. I got permission from my dr. to go get my hair cut and highlighted. I think I was more excited about getting my haircut than a person should be, but it was so nice to get out and do something normal! My mom had already told my hairdresser about what is going on so I didn't even have to endure any awkward or annoying comments. It was exhausting but so much fun! I'm in heaven! My mom picked me up and dropped me off and watched Natalie during the appointment. On the way there Natalie asked if I was getting my haircut at the same place as Molly (our dog). Not quite sweetie!