The Birth and Triumph of Madeline Alice

Two mornings after Madeline was born, I was in a hospital room on the general patient floor, shivering. I'd checked out against medical advice the night before because my husband called to say our baby was dying. I'd only seen her for a second, and I couldn't let her pass without me. She stabilized after I arrived at the hospital she'd been transferred to (the one I'd delivered at didn't have the high-level NICU she required), and it was only then I let myself feel the physical pain that came with an emergency c-section after ten weeks of bed rest. I had to go back to the hospital for pain management and observation. Unfortunately, for reasons still unknown to me, I couldn't return to the postpartum wing.

The nurses on the general level were not prepared for a woman in my condition. When I buzzed for pain medicine, it took them 45 minutes to respond. A nun who came to bless me (it's a Catholic hospital) got more than she bargained for when I burst into tears and asked her to pray for my baby. Even if I hadn't gotten the call, I knew I couldn't stay on that floor any longer.

I was forcing myself to walk, so I could start the healing process and be well enough to go to Madeline's hospital. My mom, who was with me, had left my room to find a nurse about those pain meds. My cell phone rang, and it was Mike:

Heather. When are you coming? The doctors said Madeline isn't going to make it. Babies with her problems rarely come back. Are you coming?

I hung up with him and said to the emptiness, today is the day my baby dies...soon I will no longer be a mother. I decided she would be buried with my grandmother, her namesake. I finalized her funeral in those moments I was alone, the moments that felt like hours.

My OB discharged me, and as I stumbled past her she said, "if you don't need to breast feed, bind your chest and use ice packs." Her words were ice cold, cutting through me. So thoughtless and uncaring, but they made me feel when I had been so numb.

My memory of the four mile car ride to the hospital is lost, but I remember arriving. My mom had to drop me off to park her car, so I had to make my way to the NICU alone. It was the most I'd walked in ten weeks, but I was determined to ignore the pulling of my incision and the bleeding in my uterus. I brushed by my in-laws and walked right into the NICU to my daughter's isolette. I stood next to my husband and took his hand. I didn't expect to see my little daughter alive. I felt heavy. I wondered if I would sob.

She didn't look tiny. Her body was swollen from the medications pumped into her bloodstream through what remained of her umbilical cord. I stared at her cord and cursed my body for failing her. I prayed my husband would forgive me.

The nurses and doctors spoke to me, but all I could hear was the hum of the high frequency oscillator giving her 500 breaths per minute, and the alarms. The alarms that meant she was dying. I looked around, and all I saw were faces. All looking at us, but none making eye contact. They all knew she was going to die. The other parents were told leave the NICU. Never a good sign.

The night before, I'd been told not to speak to Madeline because preemies can't handle too much stimulus. That morning, I didn't care. I started whispering to her, even though I was far away.

Mommy's here, Maddie. Please be strong. You can do this. You are the bravest person I know. Please be strong for your mommy. She needs you.

Mike and I stood there for moments, hours, minutes. Her vital numbers improved. The doctors and nurses heaved sighs and sat, exhausted. The other parents trickled back in. We didn't dare hope, we kept holding our breath. Six months later, we still haven't exhaled.

The internet is so amazing, the endless possibilities at your fingertips. Once I had a name for the reason I was on bed rest, I spent the remainder of my pregnancy with my hands on the keyboard. I sought answers, odds, and facts before Madeline was born. After her birth, I needed stories. I needed to know how people got through it. That's when I found a whole community of women grappling with loss and the fear of the unknown.

Many of the sites I visit have experienced the loss that slipped through our fingers. I was commenting on one today, and I was struggling to find the right words. I sat back for a moment and tried to consider why I was compelled to comment in the first place. Her words were beautiful and moving, why did I think that I, as the mother of a survivor, could say anything that would make her feel better? Yet, her story was haunting. It was almost me. But it wasn't. By some miracle, my baby survived. Why was I the lucky one? Why not her? I realized then I have major survivor guilt.

I'm writing all this because, as time stretches on, the details of those early days and weeks get dim. I never want to relive that fear, but I never want to forget it. Not that I ever could. I also hope that revisiting this will help me deal with the guilt I feel. The world is so random. I will never know why our baby survived where others don't. I can't change the outcome but I hope that I can comfort those who suffer. I ache for them. I touched their loss. I briefly let it envelop me when I walked into the NICU on the day my baby was supposed to die.

I will try not to feel guilty anymore.

Why the hospital sucked (besides the obvious)

We had a variety of Maddie-related tasks to do today - prescriptions, follow-up appointments & consults, and lessons on how to mix her medications - so when I woke up this morning feeling like my appendages weighed 1,000 pounds each I knew it would be a long day. I had a physical therapy appointment at 7am with a different therapist than usual. She couldn't believe all the knots in my back and neck. In fact, we spent the entire session with her working on my knots, and she still didn't clear all of them. Luckily my regular therapist had filled her in on Maddie so she didn't think I was a total stress case. I could use about eight more sessions tomorrow alone!

When we followed up with Maddie's pediatrician (loooove) today. I laid it all out for her. I told her all about Dr. Lung ordering oxygen before the oxygenation test, how she never kept us in the loop on anything, and how she was always being secretive around us. Her pediatrician (loooove) was pretty appalled, but assured us that Dr. Lung is the best around. She also said that if I ever have questions or doubts about something Dr. Lung is doing, I should call her and she will act as our go-between. I loooove her pediatrician so much, I didn't even take it personally when she said to me, "you look terrible. You need to get some sleep. A lot of sleep." Yeah, I had big bags under my eyes. I guess I should have worn makeup today. And brushed my hair. And not worn a jacket with dried spit up on it. Mike is so glad he married someone so sexy.

After I told Maddie's pediatrician (loooove) about my concerns regarding Dr. Lung, she asked how staying in the Westwood hospital was. I opened my mouth to really let it rip, then thought better of it and said, "well, it's a lot different than Santa Monica. Or even the NICU." She laughed and said, "I know what you mean, you don't have to feel bad. I try not to send my patients there unless it's absolutely necessary." The problem with the Westwood hospital is that it isn't supposed to be in use anymore.

A brand-new hospital is standing across the street, empty. I think the first scheduled time for the hospital to move was in 2006. The date keeps getting pushed back because of construction delays, equipment problems, and pipes breaking. The nurses joke that the new building is cursed. The new hospital is supposed to be AMAZING. All state of the art. Every room is private - no matter how much you like your roommate, it's hard to make decisions about your child's health with a stranger listening in - so that's great. I spent a lot of time this last week fantasizing about the new hospital. I have a crush on it.

Since, at any given time, the move to the new hospital is only a month away, the current hospital has gotten quite run down. All the important stuff works, of course. But it's worn out. I'd notice that the portible x-ray machines had duct tape up the sides. If a television a room stopped working, that was it. It wasn't going to be replaced since, in theory, it wasn't going to be needed for much longer. The paint on the walls is peeling, the floor tiles are cracked, and lights are flickering. I joked with the roommate's dad that if UCLA medical center was ranked third in the nation, I wouldn't want to see the hospital that was ranked fourth (and, while I fully disclose that Mike, Maddie's roommate's dad and I all went to USC, this isn't Bruin bashing)! Cleveland Clinic is ranked fourth, in case you were wondering.

All that being said, the most important thing in a hospital is the people who work there. The nurses, doctors, and students work really hard to make everyone healthy again. As much as we complained about things falling apart in our room, we were extremely thankful that so many people cared about Maddie and saw to it that she went home well. We were soooo spoiled by the NICU. We now realize just how amazing the NICU staff is (and we already thought they were awesome), and how lucky we were that Maddie got a bed there when she was born.

For a million reasons, I hope Maddie never has to go back to that hospital. Of course, if she does, at least we can enjoy the cafeteria. Every month there is a different theme of music playing. In November, when Maddie first arrived in the NICU, it was all Michael Jackson. This month it was 70's funk. The food there is actually really good. Yummy chicken sandwiches, fresh grilled cheese, and an honest-to-goodness sushi bar. Mmm...I'm dreaming of the shrimp tempura roll right now.

Maddie Marches Down Wilshire Blvd

Today I walked five miles and my daughter was transferred to a different hospital. I know you think both of those things are lies since I a) abhor exercise, and b) Maddie has been on the brink of transfer every day, but today both actually happened!

We started the day by attending the March for Babies in Griffith Park. Mike and I, along with 15 awesome friends and family members, walked five miles to raise money and awareness for the March of Dimes' fight against prematurity. I was the captain of our family team, "March for Maddie." We raised over $2,500 (and we're still going) and I was so, so proud to turn in all that money in Maddie's name. My friends in San Francisco raised an additional $1,800 in honor of Maddie. I have the best friends in the world. There aren't too many people that would hassle their families and coworkers for donations, not to mention getting up at the crack of dawn for a five mile walk in 90 degree heat!

Each family team had a quilt square to decorate and turn in. My brother was in charge of our square and this is what he came up with:

He drew that! He's available for your birthday parties and bar mitsvahs. All March for Maddie walkers also got a pin with Maddie's face on it. Free Maddie swag! Mike and I were sad that she wasn't at the walk, but we are looking forward to participating every year - next year she should even be able to walk a bit on her own!

After the walk and lunch with everyone, Mike and I headed back to the hospital. My mom had stayed with Maddie for the morning so we could participate, and she'd been told that the transfer to the Westwood hospital was officially happening. We didn't really believe it, since we'd been told that before. We were jerked around a bit today, too. First they told us that a NICU team would have to come get her. Then there wasn't a UCLA ambulence available. THEN we were told that our insurance wouldn't cover a private ambulence, which wasn't true. If you were following my status updates, you saw that even when Maddie and I were in the ambulence, I still didn't believe we were going to make it to Westwood! But we did. And here we are.

She is sharing a room. When we first got here her roommate was a two year old boy. He was moved to another room, and now her roommate is a little baby. He looks pretty fresh, although he couldn't be THAT new or he'd be in the NICU. I have a very interesting fold out chair that, if I didn't have my foam pad, would probably be unbearable. I will rate it in the morning. The only doctors to see her so far have been residents. Tomorrow her pediatrician (loooooove) will be by, as well as the ever-elusive Dr. Lung. We'll see if she gets her procedure tomorrow. I doubt it, but you never know.

Three of Maddie's NICU nurses have been by to see her and it was SO great to see them!!! Her overnight nurse has already offered to take over one of Maddie's nighttime feedings so I can get some sleep, which I thought was above and beyond. I might have to take her up on it!!! It's not every day you have someone who is willing to feed your child at 2:30 in the morning. Oh wait! I have one of those every day, his name is Mike.

You Gave Me Strength

We received many emails and cards when Maddie was in the NICU. A lot of the notes made comment on the strength we showed during Maddie's roughest days. I never felt strong. I was numb, on purpose. I tried to separate myself from the horror of the NICU, and I tried to not love my baby because I was so afraid of the pain I would feel when she died. I didn't understand how anyone could praise me when I felt so, so weak. Who tries to not love their own child?

I was desperate to find others that were going through the same experience Mike and I were going through. I wanted to find someone who was employing the same defense mechanism. I stumbled across the blog dedicated to the story of another little girl in a NICU who as born only 18 days before Maddie. This baby girl was very, very sick, much sicker than Madeline. Her parents somehow managed to write about their daughter every day, and what struck me was their deep love for their baby. They were told their daughter wouldn't make it, but they still loved her so much. I was blown away by how fearlessly and ferociously they loved their baby, and after that I finally let myself feel the same love for Maddie that had been bubbling up inside me.

I am not ashamed to admit that I blatantly stalked that blog! I really became invested in the family's life and we commented on each other's blogs. When she had surgery on her heart, I would reload the page 25 times an hour, looking for an update. Things were really touch and go for a while, but she pulled through, and after being in the NICU for 22 weeks, she finally went home on March 26th. I was so happy for them! I remembered the joy Mike and I felt when we brought Maddie home and I was so relieved that they were finally feeling it, too. They still updated their blog and it was great to see how they were all adjusting to life at home with each other.

Today I loaded their website and found that their beautiful daughter had died suddenly on the way to an appointment. There was no warning, one moment she was breathing, the next moment she wasn't. Her mom gave her CPR on the side of the road until the paramedics came, but despite their desperate attempts she didn't make it. There aren't words to describe the pain they must be feeling. I know how it feels to be told your baby is going to die, and that is unbearable. To actually have it happen is beyond me.

I am so grateful to this family for everything they taught me. Even now, they are showing so much grace at a time when, were the roles reversed, I would be so bitter and unresponsive. I wish they didn't have to go through this, and I wish I could somehow comfort them the way they so deserve. The loss of a life so young is a hard thing to wrap your head around. I've said it before...babies aren't supposed to die. I'll never forget this darling one, she and her family will forever be in my thoughts.

Two Months Home

Madeline came home from the NICU two months ago. I really can't believe she's been home two months. I mean that in a good way. Since she's been home, she's gained almost three pounds, has grown a few inches, and has developed a ton of personality. In just over a week, she will have been home longer than she was in the NICU. That will really be a milestone day. Even with two months down, I sometimes find myself dialing the NICU, or driving my car towards the Medical Center. I still cringe when the phone rings and I expect to see UCLA on the caller ID. I wonder if that will ever go away.

Commencement

Now that we're in a very different place, it's a bit easier to reflect back on the first few scary days of Maddie's life. The nurses are the main reason for this. They've all been coming by this past week to visit with Maddie. It's been a non-stop parade of nurse visitors for her. Each one wants to cuddle her and remark on how far she's come. When Maddie is snuggled in their arms, they kiss her and talk about how none of them expected her to survive. Her heart was constantly stopping. Her lungs kept popping holes. She couldn't breathe on her own and one night, the nurses gave her CPR for 12 straight hours. I don't know why, but they never gave up on Maddie. And look at her now - in her car seat on the way home.



How do you thank someone for saving your child's life? There aren't words, there isn't a present great enough or a hug long enough. We just thank them with everything we have. I am so grateful to them that my soul aches. I will actually miss seeing the nurses every day, and I know they'll miss Maddie. I know, though, that they will always be in our lives. There is a reunion every other year for NICU babies, and we plan on bringing Maddie to it every time, and hopefully she'll be bringing her own children someday, too, so they can hear about how their mommy is a miracle.

This blog started as a way to keep everyone updated on my pregnancy and Maddie's hospital stay. Now it will keep everyone updated on the Spohrs as we start our lives together at home. Just like we are indebted to the nurses, we are indebted to all of you. Your thoughts, prayers, and well wishes are what allowed us to stay strong for Maddie. You are part of the reason we finally got to take her home.

Maddie update from Heather's dad

Yesterday Maddie was weened from her final medication which was a slight dose of a diuretic used in preemie cases to prevent moisture buildup on her lungs. She appears to be tolerating the diuretic change without any problems. For the past two and a half months everyone of Maddie's diapers has undergone a series of tests. They will test her diaper this morning to note any differences with yesterdays outputs. Today Heather & Mike will be instructed by the staff on the home administration of Maddie's Albuteral inhalation therapy treatments. Al Buteral sounds like the name of your 8th grade PE teacher but for Maddie it will be given as needed to keep her lungs clear. They will also be given instruction on how to add any meds and the vitamins she needs to her milk supply. Kirk

No More Tubes

Maddie had her NG tube removed yesterday! She is now taking ALL of her food by mouth, and she can now eat as much as she wants, whenever she wants!

Maddie update from Heather's dad

Yesterday Maddie had one of two shots that full term babies usually receive at about 2 months of age. Today she is scheduled to receive the second injection which they want her to have before she's discharged from the hospital. Currently she is 17 1/2 inches long and weighs 6 pounds. She was also given an extensive hearing exam that she passed with flying colors. Everyday brings a different shift of nurses and doctors who come by to see "Miracle Maddie" before she leaves the hospital. Maddie is now completely free of any tubes or sensors allowing us to see her without anything in the way. Kirk

Maddie update from Heather's dad

Yesterday Mike, as is his custom, entered the Neonatal Intensive Care Unit and proceeded to wash his hands before seeing Maddie. While cleaning up one of the nurses approached him and asked if he was "looking for Maddie". This was a bit strange because Mike assumed she was in her usual spot. It turned out the nurses had taken her from her crib and were giving her sort of a farewell tour of the entire NICU. The doctors and nurses enjoyed seeing how big she is now that she's almost 6 pounds and has almost doubled her birth weight. They all said babies like Maddie are why they work under the high stress conditions of the NICU. She continues to eat all her bottle and doesn't need the Nasal Gastric feeding line to her stomach anymore. Maddie will be coming home soon. Kirk

Maddie update from Heather's dad

Yesterday Mike, as is his custom, entered the Neonatal Intensive Care Unit and proceeded to wash his hands before seeing Maddie. While cleaning up one of the nurses approached him and asked if he was "looking for Maddie". This was a bit strange because Mike assumed she was in her usual spot. It turned out the nurses had taken her from her crib and were giving her sort of a farewell tour of the entire NICU. The doctors and nurses enjoyed seeing how big she is now that she's almost 6 pounds and has almost doubled her birth weight. They all said babies like Maddie are why they work under the high stress conditions of the NICU. She continues to eat all her bottle and doesn't need the Nasal Gastric feeding line to her stomach anymore. Maddie will be coming home soon. Kirk

Getting Closer

Maddie is getting stronger and bigger every day. She's now up to 5 pounds, 14 ounces. She is SO CLOSE to six pounds! She didn't gain any weight yesterday, which isn't a big deal. Usually when she doesn't gain any weight one day, the next day she's gained double what she usually does. I'm really looking forward to when she's 6 pounds 2 ounces so I can say that she's doubled her size since birth.

She's doing really well with her feedings. Yesterday, it was like a little light bulb went off over her head. She's finished every feeding since 11 am yesterday. That is what we need her to do to bring her home! If she keeps it up, well, I don't want to jinx anything, but she is moving in the right direction. I don't think it's a coincidence that yesterday also marked what would have been 38 weeks gestation. Babies born at 38 weeks are considered full term. Maddie really just needed to get older. It normally takes her about 20-30 minutes to finish a bottle, although at 5 am this morning she ate the whole thing in 10 minutes. It's sort of mind blowing, because a whole bottle for her is only an ounce and a half. To keep with our theme here, an ounce and a half fits in a shot glass. Such a tiny amount! But of course, that amount will increase as she gets older and bigger.

The doctors solved one mystery today. For the last five or so days, Maddie has been wheezing a lot. And even though her wheezing is adorable (she sounds like one of Rigby's squeaky toys!), it was causing some concern. Occasionally, her breathing would become labored because of it, and she would actually require a breathing treatment to help open up her lungs. One of the doctors had the idea to remove all the stuffed animals from her bed, as sometimes babies are allergic to the furry material toys are made of. Mike and the nurses and I sort of scoffed at this, since she's had stuffed animals around her since her second week in the NICU. But, lo and behold, it seems to have done the trick. She hasn't had any wheezing issues since the toys were removed. So, for now, all her fun stuffed animals will be up on a shelf, out of the way.

Mike and I, with the help of our family, have been working pretty hard to get her room ready. We've made some big improvements in our place, most notably getting new carpet, so things have been pretty nuts at our house lately. But when Maddie comes home, she's have brand new carpet and furniture and all sorts of new clothes and toys. This past Saturday, there was a shower in honor of Maddie at my aunt's house. My mom and my aunts, and Mike's mom and his aunts and sister, my cousins, neighbors, and family friends all turned out and totally spoiled Madeline. She is going to be one well-dressed baby!

Maddie update from Heather's dad

Madeline had another good night. She ate all her milk at every feeding and had no breathing treatments or lung issues. Heather was there last night and was able to give her a bath and said Maddie was happy (no tears) throughout the washing. Kirk

Maddie update from Heather's dad

Maddie is still doing well although she is currently being given
breathing treatments, as needed, for a slight wheezing. The doctors
feel she may have a slight cold or allergy. Her current weight is 5
pounds, 15 ounces. Kirk

Maddie update from Heather's dad

Maddie's doing so well that today, no news is good news. She continues to eat well and be awake a little more each day. Kirk

Maddie update from Heather's dad

Maddie celebrated her 2 month birthday yesterday by participating in
her favorite activities... eating and sleeping... which has allowed
her to now weigh in at 5 pounds, 14 ounces. Kirk

Maddie update from Heather's dad

Maddie is doing very well. She continues to eat & gain weight. Her current weight is 5 pounds, 12 ounces. Preemies are usually fussy but Maddie's learned to tolerate baths and diaper changes well....as long as they don't take too long at which time she let's her displeasure be heard...LOUDLY! Kirk

Maddie update from Heather's dad

Madeline Alice continues to eat & sleep like a champ and is making good progress towards leaving UCLA soon. In the meantime Heather and Mike have been busy repainting and carpeting "Maddie's room" and making sure that they have her new furniture arranged to their liking. Preemies who have any pulmonary issues such as Maddie did at one time with mucus in her lungs, are given a genetic test for Cystic Fibrosis. We are happy to say Maddie's test came back negative. Kirk

Maddie update from Heather's dad

Madeline Alice continues to eat & sleep like a champ and is making good progress towards leaving UCLA soon. In the meantime Heather and Mike have been busy repainting and carpeting "Maddie's room" and making sure that they have her new furniture arranged to their liking. Preemies who have any pulmonary issues such as Maddie did at one time with mucus in her lungs, are given a genetic test for Cystic Fibrosis. We are happy to say Maddie's test came back negative. Kirk

Maddie update from Heather's dad

Maddie continues to do well and enjoy her feedings. She is on a three hour feeding cycle although when she doesn't finish her milk it is then given to her on demand usually when she wakes up from a nap. Kirk