Madison's Progress

Madison is somewhere around 10lbs now, she holds her head up (just the occasional floppy moment here and there), does push-ups when she's on our chest or doing tummy time, has rolled to her side a few times, has been smiling on request since her due date (10 weeks old - or zero days old if you go by corrected age). She's learning she has a voice and has been making funny noises at us the past few days. We're looking forward to her being able to really coo and "talk" to us. She's even had a few times where she was doing a big grin and then made laughing noises... still not a full on laugh, but I think she will figure that out soon.

She still has trouble feeding/eating, but keeps the majority of her food down and is able to gain weight well. And we're sooo looking forward to the day that she is sleeping through the night!! Although the preemie books state that could be until she's 8 or 9 months old - geesh!

Just when we think we couldn't love her any more than we already do, she'll do one of her big silly girl grins at us and we melt.

Our little miracle: Madison Irene

On Jan 28^th at 11am I went in for a standard checkup, a week earlier than my planned checkup, at the recommendation of a friend who thought I might be suffering from a condition called preeclampsia. (Preeclampsia is a medical condition where pregnancy-induced hypertension arises in association with significant amounts of protein in the urine).

When I arrived at the doctors they informed me that I needed to do a glucose test that day too, since I was at the 28 week mark and that’s the time they like to test for it. At that point, I was getting a little frustrated because I had planned to go visit my great grandma (Alice Irene) that day to sit with her for a while. She was on her death bed in my grandma’s house, had been for almost 2 weeks, and even though she couldn’t eat lunch with me or play our weekly game of dominoes, I still wanted to spend some more time with her before she passed. But knowing I needed to take the test and this was when they were supposed to test for it, I agreed and gulped down the sugary orange soda mixture.

A little later, the nurse Angie put me in the exam room and came back with bad news… my routine pee test had dipped out at a 4+ on the protein scale, which is high, even for me. So I started to hydrate myself and peed in a few more cups for her and those came out better in the 2+ range which was more normal for me. But the first dip of 4+ really had my doctor pretty worried, so she came in and said “Nicole, I know this may be a bit of a shock, but I’m going to admit you for 24 hours of monitoring for you and baby so we can rule out preeclampsia”. I said, admit, what does “admit” mean? She says, oh, I mean admit you to the hospital. I’m thinking, “Wow, really, is that necessary?” She insisted it was for the best and it would only take 24 hours to get the tests they needed.

I begged them to let me go home to let my dog out and get some clothes and of course they denied my pleas, insisting I need to be checked in immediately to start the testing. So I called my Dad to see if he could come to the hospital, get my house key, go to my house, let Jack out and come back to give me my key. Thankfully he was available because Jon was in Seattle that day and wouldn’t return home till really late that night. So they put me on the 13^th floor of the OHSU hospital, where mommies and babies go after the baby’s been delivered. They started a whole slew of blood and urine tests, as well as 5 ½ hours of fetal monitoring for Madison. Now, it was only supposed to take a few hours to monitor her, but she was REALLY good at kicking, moving and getting away from the monitors. So finally after 5 ½ hours the nurse gave up on trying to get a solid 20 minute stretch of monitoring because Madison, as she put it, was the hardest baby she’d ever monitored, and she was going to just let her “win”. They weighed me and I had put on another 20lbs in just 5 weeks… 4 lbs a week for the 8^th week in a row. This was really alarming to me because I wasn’t eating enough food to put on even half that, and I was worried at times I wasn’t eating enough… but certainly not too much! But, the nurses dismissed this at the time, laughing it off and telling me not to worry, that I’d lose the weight after the baby came.

Several days into the hospitalization, one attempted AMA (I was going to leave Against Medical Advice on day two…) and 20 some tests later I’m beginning to wonder if OHSU is just keeping me here to help pay off their building expansion debts. And I’m getting more and more mad by the day. No answers, no one knows what’s going on, preliminarly tests say that I shouldn’t be here, but they’re keeping me because some of the lupus tests take 5 or more days to process… something they didn’t tell me when they admitted me for “24 hours of monitoring” on day one.

Still more days are passing and no one has any more answers. Why am I here? My doctors don’t seem to think it’s a lupus nephritis flare up, and my blood pressure isn’t high enough (yet) to be full blown preeclampsia, so really, why am I still here!?

On day 7 of my hospitalization the Lupus tests finally come back – wow, this is not good news at all. I had just celebrated 2 years in remission from my last flare up on Jan. 31^st – Jon and I had dinner together in the hospital café (at this point, I was still allowed pretty much free-roaming of the hospital , I just couldn’t leave the property.) So the tests say I’m in a major flare up, worse than I’ve ever experienced. This is why I’m here, my immune system is once again trying to kill my kidneys… kidneys are not doing well at all! Now the doctors are in a fight to keep Madison in me as long as possible, giving her the best chance at survival and as much growth as possible in the womb. They’re worried about her lungs, she’s only 29 weeks now. So the nurses give me what I affectionately called the “butt shots” – steroids to help develop the baby’s lungs. Steroids that come in a GIANT shot, one that my nurse was trying to conceal from me, but her hand couldn’t cover the whole shot, so I saw her coming and knew what she had. One in each cheek, 24 hours apart. Funny thing is, next day, when I’m preparing for round two of butt shots I give a phlebotomist (who doesn’t speak English very well) a little scare when I ask her what cheek I should have the second shot in… she’s just here to draw my blood, and I’m baring my butt cheeks for her, imagine her confusion! J

Every few days the protein excretion levels in my urine were doubling. At my sickest point 2 years ago, my protein levels never got over 2.4 grams. And at this point, they’re over 8grams, which is way too high, even for me, with Lupus Neprhitis and being pregnant. And daily my creatinine levels were getting worse too (indicating that kidney failure was on it’s way if they didn’t do something quick).

The plan is to treat me as much as they can with Maddie still inside – there’s only a few options they have left at this point. So the doctors start me on three 1000mg doses of IV steroids hoping this will shock my immune system enough to stop the attack on my kidneys. These IV steroids are incredibly painful, feels like fire going through your veins. It was like reliving a worst nightmare sort of situation. Last time I had it done I hoped and prayed I’d never have to experience it again. Not to mention I don’t take IVs well, my veins will explode after having them in for a few days- which means they have to start a new IV sites every few days. And I think I ended up with a total of 6 IV sites after it was all said and done. A few more than actually necessary because they sent a nurse who was brand new at putting in IVs to give me mine – not cool. Each steroid treatment lasts an hour, so I try to pass the time by watching The Office on DVD. The laughter helps sometimes, so does just being alone to cry, it’s easier when you don’t have to put on the happy face for anyone. And it’s hard for me to see Jon’s face, knowing he wants to help and there’s nothing he can do. I don’t like having to be strong for him. Sometimes I just want to break down and be alone.

After the three days of doses via IV they start me on 60mg oral doses. The steroids make my vision blurry, give me roid rage, make my face very swollen and painful, cause swelling in my legs and knee joints making walking painful and sometimes impossible, dry out my skin, eat at my stomach lining, cause indigestion, heart burn and constipation or diarrhea depending on the day. They make it hard for me to talk, think, work. They kill off my taste buds, make my teeth extremely sensitive to cold and heat and cause an insatiable appetite that makes me gain unreal amounts of weight in a matter of weeks or months. But they are the only fast acting option available, and the only thing they can give me to help with baby in me. The immunosuppressants I need to be on are far too toxic for Madison’s little body to handle.

The diagnosis of preeclampsia takes a back seat to my kidney funtion issues. Luckily for me, I won't have to be on a magnesium drip when I deliver Madison, desite my raising blood pressures.

Day 13, the tests come back that I have over 11 grams of protein in my urine. The doctors talk about the options and decide that getting Maddie out is the only one left, otherwise my kidneys will be fried past the point of use for me. I was doing a natural vaginal birth, just on Tylenol, on a liquid diet. I was keeping an open mind about an epidural and had already asked Dr. Clock what she thought… She said now was not the time, they really wanted to see if I could make it through a natural vaginal birth, that it was going to be best for me and Madison if I could, and if near the end it was too painful, that would be the time to consider it. So… I was about 26 hours into the induction (they used Pitosin in an IV to get the contractions started, as well as two pills they placed on my cervix). I had been contracting regularly for the last 21 hrs., and then having strong contractions every 2 mins. for the last several hours. They used a bully ball (sp?) to help dilate me, pulling on the ball to apply constant pressure on my cervix, then taping it to my leg so it stayed in place – ouch, that’s not fun. At 4 cms they broke my water (talk about feeling like you’re peeing yourself!!) and things started to turn for the worse. Every 2 mins. Madison’s heartbeat would drop to 60-80's with each contraction - then she would return back to a normal range after each was over – meaning the cord was probably wrapped around her neck at this point. So I started trying to keep her heart rate up myself, by rocking back and forth, shaking my belly, having my sister rub my back… anything I could think of, and sometimes it would work, her heart rate would stay in a more acceptable - not dropping off the scale each time. But still, every 3^rd or 4^th contraction she would dip really really low. The doctors were monitoring it in another room really closely, and my nurse Joan was monitoring it in my room. She was trying to calm me down by telling me, “Now it’s not like you see in the movies, where they RUSH in, cause a big commotion, yell out to the OR and wheel you out of the room at top speed. If they decide to do a C-Section they’ll come in and let you know and we’ll get you all prepped. And Dad, you’ll get to be in there with Mom, and you can go with baby if you want or you can stay with Mom while they finish up the surgery. “ No sooner did she finish saying that did the doctor come in to check my cervix (Thank GOD it was the more petite doctor with the “smaller” hands who was checking my cervix this time… the man Doctor’s hands were a little bigger than I was happy with!!) Anyway, the little doctor came in to check my cervix and feel around to see if they could tell what was going on with her heart rate. This is when the doctor found the umbilical cord coming out (prolapsed cord), then she said, “no, wait, it’s her hand, she just grabbed my finger” (At this time, Jon and I are Hi-Fiving each other in excitement and relief)… then she says, “No, wait, no it’s actually her hand, head and the cord, SOMEBODY CALL THE OR!! Get the OR prepped right now!!” And looked at me and said, “I'm sorry honey, but this is going to be painful, I have to get my hand all the way up in you to keep her in there.” EEEKS! PAIIIIN!!!!

So she jammed her hand up there and was trying to re-arrange things so to speak to help out the situation. Apparently (according to my Mom and Jon) the look on my face was one they hope to never see again. L The last heart rate they had for Madison was in the low 30s and now she couldn’t feel the heart beat in the umbilical cord anymore. This is so NOT GOOD. So she and another doctor jumped on the end of the bed and we officially going “top speed” down the hall to the OR. Within minutes there were 12 doctors and nurses surrounding me, asking me questions, hooking me up, tossing a cold liquit on my abdomen, trying to put me on oxygen, etc. … so much commotion, so much fear in everyone’s eyes. Then they’re telling me I’m going to feel pressure on my throat… and that’s about the last vivid memory I have. I have lots of flashes of lights and sounds that I remember, but they don’t make any sense. And I remember thinking I was dying at some point in the whole thing. I felt a lot of uncertainty and woke up not knowing where I was, who I was, what had happened or if I was really alive. I was in the most pain I could imagine. Everything was surreal, like it wasn’t really happening.

What happened in the Operating Room…

Well, when they got me in there, they gave me a drug called succeconoly. A very commonly used muscle relaxant to put someone under before an emergency surgery. Unfortunately for me, I’m one of the 2% of people who actually get lock jaw as a complication of the medication. So when they tried to intubate me they couldn’t get my jaw open to get the air tube in for me. This is where I owe the life of my baby girl to a lady named Trish. She was my anestgeologist. She made the medically “wrong” decision for me, and the “right” decision for Madison, and for her I will be eternally grateful. Her training teaches her to give me another drug (a shot that’s a muscle paralyzer) to open my jaw so they could have intubated me and get my airway open for the surgery. But she knew she didn’t have time for that, they had already lost Madison’s heart beat and it was in the 30’s the last they knew of. She knew Madison wouldn’t make it if they took the 5 mins. it would take to give me the shot, open my jaw and intubate me. So she said “Get the baby out, I’ll breathe for her.” And she spent the next hour breathing manually with a bag for me. Never letting my oxygen saturation drop below 90%. One nurse held my esophagus closed so I wouldn’t vomit and choke and another held my face up and the mask firmly on. And because of them, Jon and I have an amazing little girl and we owe them our lives. It makes me cry every time I think about it. Trish came to visit me three times after the c-section, she was so emotional the first time and we didn’t know why, until she told us the story. I had no idea that had all gone on. She told me how she graduates in 4 months and she’s never had such an adrenaline rush in her life. She was so thankful she drank her coffee on the way to work that day, instead of later on in the day. She said it helped give her the energy to breathe for me the whole hour – and that her hands were still cramped from the whole thing- But that’d she’d do it again in a heart beat. She came back the next two days to make sure I was okay and to check on Madison. On the third day she gave me a piece of paper with information about the reaction I’d had and said I really needed to get one of those medical ID bracelets made with all my drug allergies on it because this drug was commonly used in car accidents and events like that when quick action needs to be taken. She wanted to make sure it never happened to me again.

The unfortunate thing about not being on an epidural prior to emergency surgery and having your anesteseologsit breathe for you for an hour is no one is available to give you pain medications during the surgery so you don’t wake up really feeling like your dead. Which I did. Right before the surgery was over they gave me a shot to help numb the pain. Well, if that was numbed, I would have really been in trouble had I felt the full amount of pain!

What happened? Am I alive?

I woke up first wondering if I was dead, then wondering if I was alive but just blind – and then wondering why my whole body was shaking uncontrollably. My jaw was clattering, and it hurt so bad. I couldn’t get my mouth open to talk. I couldn’t focus my eyes on anything, the room was moving and swirly. I could start to see people around me, but I didn’t know who they were. I was in the corner of a dimly lit room. The pain, why am I in so much pain? I didn’t realize I was in the hospital and had just had a baby. That’s when Jon came over to me. Wait, I know him, he’s my husband, Jon’s here! He told me she was doing fine… she, who? Wait, I had Madison already?! Jon talked to me for a few minutes and then they wheeled Madison’s isolet over to me in my bed. Jon had insisted that even though they “weren’t supposed to” could they please bring her over to me so I could her? My eyes were blurry, I couldn’t see a lot, but I could see her hand sticking out of a blanket. And someone helped me put my hand in her isolet window. This is when she grabbed my finger, and I started to sob. Everything was so overwhelming. I was in more pain than I could ever describe and crying was making it hurt even worse.

After some period of time when I was stabilized they moved me to the trauma ICU for the night. I was going to have my own nurse watching me the whole night from a little window box in the corner of my room. She would monitor me throughout the night to make sure I recovered okay. They hooked me up to a pain pump with hydromophone. I was told to push the button any time I was in pain (to which I thought, UHM, excuse me… I’m at a level 10 right now, can I start pushing the button yet??). This is when the next round of my personal hell started. APARENTLY I’M ALLERGIC TO THIS STUFF TOO! So this brings my allergies to… codine, ibeprophen, vicodin, oxycodone, and hydromorphone… are there any pain killers left I can take? Oh, yeah, I can still take Tylenol! J Unfortunately for me, the pain pump of hydromorphone causes me to stop breathing. So the ENTIRE night I would stop breathing every 30 seconds to 2 minutes. At which time an alarm would sound to wake me up and tell me to breath. FUN. And my poor ICU nurse had twisted her ankle a few weeks prior and had a running limp each time she had to scoot in there to turn off the alarm… every few minutes. This lasted for 9 hours. I didn’t sleep a wink. And I would fight it, I would try so hard not to fall back asleep because everytime I did I stopped breathing. But my eyes would roll back in my head and I couldn’t stop it. So I took myself off the pain pump after that night, by morning I couldn’t handle any more of it. My nurse said she’d make sure I was breathing all night, but I just couldn’t do it. Not only was I not sleeping, but I was scared. And gasping for breath every few minutes is very tiring too. So I spent the next several hours on no pain meds at all. By the time they had approved oxycodone and Tylenol for me I was in a world of hurt and days behind on my pain maintenance.

Well, this is when I find out I’m allergic to oxycodone as well. I really thought I would need butt surgery to repair the damage from that. Thankfully I made it through that as well, and didn’t have to call 911 like I was certain I would have to do. And truly, I thought my neighbor Will was going to hear my screaming and call the cops, afraid someone was attacking me. He must have been gone that day, he’s usually very attentive to anything that goes on in the neighborhood. J How embarrassing… “Uhm, yeah, I, well, I’m… I can’t poop, haven’t been able to for several days now, and I think I’m going to explode – there’s a freight train bearing down on my butt and I’m plugged so bad it can’t come out. Can you get an ambulance out here right away!!“ That would have been the story of all stories. I actually had to take a photo of what came out because I was in such shock myself. I could not even fathom how that much shit was in me. And my fear level was so high after that I literally couldn’t eat for a few days because I was soooo afraid of what might happen if I did. All I wanted after that were vegetables, fruit, fiber bars, I was obsessed with the fiber content on everything I ate. It took a week to walk straight again after that whole experience and I wasn’t about to repeat it anytime soon!

All of this, while trying to go up and see Madison in the hospital on a regular basis. We finally get to hold her (in a pillow) for the first time on the 3^rd day. Jon lets me hold her first and I just burst into tears as soon as they put her in my arms. I ask the nurse if it’s okay to give her a kiss. She is so tiny, so frail looking. Just under 3lbs at this point, it feels like you’re not holding anything but a pillow. We can only have her out for a few minutes and they are closely monitoring her breathing since they had to take of her CPAP machine to get her out of the isolet. They have an oxygen tube blowing air into her face to remind her to breathe. She’s doing pretty well at it.

Every day it’s such a struggle to see her. I feel so incredibly yucky from all the medications, I’m still in a world of pain and getting sicker by the day. I feel so guilty when I sleep in and don’t get right up there in the morning. I struggle with feelings of disconnection from her and like I’m a horrible mom for not spending the entire day at her bedside.

The medications they put me on to turn off my immune system are really taking their toll on my body. And unfortunately, the high doses of prednisone are preventing my healing. Within less than a week my incision had popped open in 3 places. Two of them are quite large holes, the other smaller- but the doctors reassure me that my guts won’t come out, that part appears to be sealed on the inside and the stitches will help keep it closed too. I have to go back in to the doctor every few days for wound checks – and now I have to pack my wound with gauze twice a day to help the swelling and inflammation drain out. This turns my stomach each time I have to do it… but I can’t have any help with it, I get more nauseous when I don’t have any control over the situation.

I’m now on shots to thin my blood, because my kidneys are functioning so poorly, its affecting the function of my liver and it’s role in blood thinning. They’re worried I will get a clot as I heal from the incision, so Jon has to give me these horrible shots twice a day in my stomach. At first he was giving them in my arms and legs, but I’ve just been given an informational packet that says it needs to be administered in my stomach, and that I have to alternate sides and locations so there’s not too much tissue damage caused in one spot at one time. Oops, good to know. The problem is I’m starting to not like Jon as much when he comes at me with a needle twice a day. J And one time he stabbed me three times before it went in. I just turned over and looked at him saying, “You’re kidding me, right?! Did you just stab me three times?!” We started laughing so hard. But secretly I wanted to give him a shot in his sleep… show him what it feels like! Hahaa

Sadly, Great Grandma Alice Irene passed away on Jan. 31^st, 2009 at 104 years old. Her 105^th birthday is May 13, 2009. That will be a bittersweet day. Great Grams and Maddie missed meeting each other by just 9 days. And she was trying so hard to hang on so she could meet her very first Great Great Granddaughter. Some think Great Grams had to pass when she did to help Madison enter the world. I will always think of this myself and I know that Great Grams has helped Maddie in ways I will never know.

The road to recovery is such as slow daunting road. It plagues me each day. I feel helpless some days, and others I have a renewed sense of strength and determination. I hate to look in the mirror. Why look when it’s not you, you see looking back? Sleep depravation doesn’t help either. Neither does having a preemie infant at home – one with acid reflux that screams out in pain. Really, I can’t wait for this time in our lives to be over, done with, in the past. I want to feel good again, normal. Or at least what’s normal for me. I want so badly to enjoy this time with Madison, not dread each coming day. I know that we’ll look back and this will seem like just a glimpse in time. A short period of our lives. I know I will be in remission soon enough. It’ all in God’s timing. I just wish I knew His timing. I think the unknown is always worse than the known. I know I have lupus nephritis, but I want to know when I’ll be healed of it once again.