Excerpts from my pregnancy journal

Today is Nate's 4th birthday. FOURTH, people! How do I have a four year old?

Every year around Nate's birthday, I go back to my pregnancy journal that I started a few days after the fetal surgery. My mother in law, Janie, encouraged me to start a journal, and at first I thought I would never want to remember some of the painful details of this time in my life. Now, I am SO glad I kept this journal. It was therapeutic for me at the time, and I just love reading it every year and remember the most defining period of my life and seeing how far we've all come. I thought I would share some excerpts from that journal.

First entry--Monday, April 24, 2006 (5 days after surgery)
".... They put me in a gown, started the IV, and put in the epidural. When they rolled me in the operating room, I was feeling sleepy and I had to hold up my IV bag. My mom said I looked like the statue of liberty. ... The anesthesiologist put the mask over my face and told me to breathe deep. I took about 3 breathes, and the next thing I remember they were waking me up back in my room and everyone was there. Blake was talking to me and I heard my mom say she was so proud of how brave I was."

Friday, April 28, after an ultrasound
".... I was afraid my fluid wouldn't be increased enough and they would put me back in the hospital. Well, everything was fine. The amniotic fluid had doubled, his ventricles were no more swollen than before, and we watched him flex all his joints. Hannah, the tech, wanted to see Nate flex his ankles, but he was just hanging out with his ankles crossed. She poked and poked at him, and he finally got mad and kicked her back!"

Tuesday, May 9
"... I finally met with Dr. Tulipan (neurosurgeon) yesterday.... When he did come in, a half hour late, he didn't shake my hand, introduce himself to my dad or anything--just said, "Hello, so why are you here?" I told him we understood that he had found during surgery that Nate has myeloschesis instead of myelomeningocele, and we wanted o know more about that. He said it doesn't make any difference. I asked several questions about it, and all he said was that the results would be the same, this was just a variation of the myelomeningocele. He said, "I honestly don't know why you're focusing so much on this." Uh, because I like to be informed about the health of my child, you big pompous jerk. My dad told him we were just curious because we had never heard the term before and just wanted to know what it meant. Then I thanked him for his time (not sure he picked up on the sarcasm). It was a short visit. It's pretty much exactly what I expected, but it upset Blake--he had gotten his hopes up that this would be better than we had previously thought."

Sunday, May 14
"Today is my first Mother's Day. ... Yesterday I was hoping we could go to the store for some drinks, but Blake got them while he was out. Then I wanted to go out to eat, but we ordered in. Then on the way to a movie, we stopped at the bookstore, but there were no parking spaces so Blake said he would just run in real quick and I could stay in the car. And I threw a tantrum. I started crying and said I wanted to go in the bookstore too and I was tired of sitting in the apartment and waiting in the car. (I was on modified bed rest.) Blake said he didn't realize how much the bookstore meant to me. He said these pregnant hormonal outbursts throw him for a loop and it tugs at his heart to hear me cry. So we went in the bookstore and to the movie. It was a nice night--warm, I was wearing my purple floral skirt. It was a nice date."

Monday, May 15
"Mary called this morning ... and said my glucose test was a little above normal, so I have to take the second test on Thursday. ... Please, God, let it be negative. I don't want to be on a diet! No sugar?! Haven't I suffered enough? :) I feel like I'm a guinea pig in some tortuous experiment!"

Sat., May 20
.... Even though I love being pregnant--the belly, feeling Nate move--I think I'll be glad when it's over and he's here. I hope it's another 2 months or more from now for all our sakes, but this pregnancy stuff is hard. My stomach hurts most of the time, I dread going to bed because I can't sleep and my hips hurt so bad. It's a little scary though, because it's not like everything is going to go back to "normal." Everything will be different, and we really don't know what to expect."

Sat., May 27
I'm in the hospital for the long haul now. Thursday evening, my water broke. We weren't sure that's what it was, but my dad took me to L&D and Dr. Collins confirmed it the next morning. When I first heard, I thought Nate was going to come right then, and I was really scared. I'm only 28 weeks. ... Daddy waited to call my mom early the next morning, and I waited until Dr. Collins confirmed it before I called Blake at work. I said, "I have some bad news--my water broke." He was in a meeting. He said, "I'll be there in 3 hours!" He freaked out until I finally remembered to say that Nate wasn't coming right then, could be days or weeks... Mary came to see me yesterday morning, when I was most scared. I asked her what I had done wrong--I've been trying so hard to do everything right! She told me to put that out of my mind because I had done everything I should. ... I just don't know why my water broke so much earlier than everyone else in the study. ... After reading my Bible last night, I realized how completely out of my control this is--God is going to take care of us whether Nate is born tomorrow or weeks from now."

Tues, May 30
My mom took me for a wheelchair ride today, and we can't figure out why they put so much brick sidewalk all around the hospital. I jiggled so much that Nate was on the other side of my belly when we got back."

Wed, May 31
"...I spend my time drinking water (to make amniotic fluid) and going to the bathroom like it's a full time job."

Sat., June 3
"After all this is over and Blake and I are finally at home together with Nate, I am going to try to always be simply grateful for my family. I know there will be stressful days, but I just want to enjoy our family and make Nate's childhood as happy as it can be. ... And as of now, even after all I've been through with this pregnancy, I'm thinking we need to have another child in a couple years...."

Sun., June 4
"I had a bad morning. I woke up around 4:30 (a nurse popped in, even though they're supposed to leave me alone to sleep at night) and my stomach was cramping a little. The nurse put me on the monitor and I was having regular contractions. They were small, but I could feel the tightening when I saw one on the monitor. It was time to take my medicine, which stopped the contractions in a few minutes. She brought the Dr. in, who wanted to make sure my cervix was still closed. I was so scared and uncomfortable that I cried until she stopped. They sent me to L&D to be monitored and for IV fluids. I was so afraid this was all over. Blake had spent the night at the apartment so he could rest better than in the hospital chair, so he wasn't with me. ... I was trying to sound calm and told him I had had some contractions they had sent me to L&D for monitoring. I told him he needed to come over now. He said, "Were they little contractions? Do I have to come now?" ! I said, "I'm in Labor and Delivery, and I'm scared!" He was there in no time. I didn't like being there at all. It was cold, the bed was hard, and most of all, that's where the babies are born. ... All of this is so exhausting--mainly mentally and emotionally. I wonder if I will have aged 10 years by the time I get home. I'm worried that the rest of our lives will be this worrisome, with Nate's medical problems. It's all overwhelming, but I know God will take care of us."

Tue, June 6
I made it to 30 weeks! ... I'm still feeling pretty good, but I know things are unstable enough that something could happen tonight. But now that I've made it 10 days, I think I can go 2 more weeks."

Sun, June 11
"So a strange thing happened this weekend. Yesterday morning, the nurse came in and said Dr. Kang changed my procardia (very important anti-contraction med) from every 4 hours to every 6 hours because it lowers my blood pressure so much. Well, we just changed it to every 4 hours last weekend after the contractions episode, and it's working. And, I've had low blood pressure the whole time I've been in the hospital and no one has minded. Later, the nurse came back and was going to give me IV fluids--which I totally don't need because I drink gallons of water a day. And no one had come in to talk to me about any of this. So the nurse said she would go get a Dr. and Dr. Knapp came in. She acted all annoyed that I was questioning this--and like I was thinking only of myself instead of the baby! Hello! That's why I don't want to reduce the procardia--so I won't have contractions and go into labor so that the baby can stay with me as long as possible. So I convinced her fluids were unnecessary and to only reduce my meds to every 5 hours. I also decided to sit straight up every time they take my blood pressure, even in the middle of the night, because it just looks low when I'm laying down. Then this morning, the nurse came in and said Dr. Knapp put my procardia on hold. I said what do you mean 'on hold'?! She said I couldn't take it until Dr. Knapp thought my bp was high enough. She also said Dr. Knapp told her she had talked to me about this decision. I didn't even see her today! In fact, I talked to Dr. Collins (my main doc) this morning, and he said he didn't care what my bp was as long as I was feeling okay. So I told the nurse to please go tell Dr. Knapp that taking procardia is MOMS study protocol and that Dr. Collins (her attending, whom she did not even consult with) is not concerned about my bp. The nurse came back and said Dr. Knapp said it was okay to take it then. Darn straight--I have my own meds here, and I can take it even if she says not to. I feel like I have to fight these people so they don't completely screw things up.
Oh, and we filled out Nate's birth certificate today! Exciting!"

Random entry titled "Things I hate about being in the hospital"
1. Always having tape on my arm hair (IV)
2. Pillowcases that come off the plastic pillows
3. Peeing in a hat
4. Having the same menu every week
5. Riding in the wheelchair on brick sidewalks
6. Being woken up 20 times after 6 am
7. Dragging the IV pole to the bathroom at night
8. The blow-up leg thingies
9. The big scary charge nurse
10. The Dr. who persistently tries to take my medicine away
11. Wearing the same 4 maternity shirts over and over
12. This bed--the bottom has to raise when the top raises
13. The remote control that always falls in the floor, only changes channels up, is too quiet for two people to hear the TV at the same time, and accidentally calls the nurse all the time.

Thur, June 15
"...My c-section is officially set for 9:30 am on July 4. Yankee doodle baby!"

Sat, June 17
"I had a rough morning ... The walls were closing in on me. I've been here for 3 1/2 weeks straight. In this room. I suddenly got very claustrophobic and upset (mostly because of the lack of sleep) because I CAN'T LEAVE! Everyone else can leave, and they just don't know what it's like. And I don't even have a choice in it--if I left, Nate and/or I could literally die... I'm so tired right now, and I'm just waiting until I can finally go to sleep without waking up in the middle of the night." (HA! It hasn't happened yet! )

Tue, June 20
"32 weeks! 32 weeks! 32 weeks! ... It's hard to believe that in 2 weeks, Nate will be here. I'll be a mom, our parents will be grandparents, and Blake and I will have our own family. Weird. I'm excited."

Sat., June 24 (day before birth)
My appointment yesterday went really well. Nate's ventricles hadn't changed, and I asked Dr. Collins if that meant Nate would not need a shunt. Although he couldn't tell me straight out, he made it clear that that was the expectation. ... We saw Nate move his legs, and i asked Dr. Collins if that meant Nate would move his legs when he's born and he said (in so many words) that that was what they expected. Oh, and he weighs more than 4 pounds now! We're really hoping for a 5 pound baby. ... I haven't felt great today. My stomach has been kind of sore, especially when the baby moves. I'm going to be so ready to have this baby by July 4th. But I really want to keep him as long as possible so he can spend less time in the NICU. For now I'll keep incubating. It's not a pleasant job ... well, sometimes it is."

Sun, June 25
"Today was Nate's birthday! I had contractions last night and was sent to L&D. When they didn't stop, they checked me to find I was 3 cm dilated and 75% effaced. It went so quickly that we barely had time to call our parents. I was prepped, which seemed to take forever, and Blake was there for the surgery. Dr. Collins did the surgery and Mary was there. The best sound in the world was when we heard Nate cry. They brought him over to me and he calmed down. They let Blake hold him and he cried. Blake took each set of grandparents over to the NICU, and tonight I went over. I got to hold him, and he's so cute! He looked so comfy, but I had to give him back after 10 minutes because I was so tired my eyes kept crossing. Which is how I feel now. Must get sleep." (You should see my handwriting on this page--all over, cause I was falling asleep while writing. )

Monday, June 26
Nate seems agitated by all those tubes and things all over him. I know how he feels, but he doesn't understand why he feels so bad. It's frustrating that I can't take care of him. I changed a couple diapers and got his temp, but it's clear that they are the caregivers and I'm just there asking for permission to do things for him.

Tue, June 27
I got to hold Nate this morning and feed him a bottle, then this afternoon, I got to try to breastfeed him! It was great. He even opened one little eye to see me for the first time. I'm in love. ... Tonight I was having trouble pumping, and I started freezing. I was running a fever, and the nurse said she would call the doc. Well, I'm already hormonal, so I started freaking out that I wouldn't be able to go home tomorrow--and despite what Blake and my mom said, it DID seem like the end of the world. I cried for about an hour, and then the big scary charge nurse came in and helped me with ice and pumping. I still should be able to leave tomorrow."

Wed, June 28
"... Nate is doing great. The doctors and nurses say his repair on his back is the prettiest they've seen. I almost regret calling Dr. Tulipan a jerk. He's a talented jerk."

Thur, June 29
"Ever since they've been feeding Nate my milk, I haven't heard him cry once. He's a good baby. He would like to eat more than they give him. ... He was also determined to keep kicking off a blanket we put on him. It would take him half an hour, but he would kick his legs and push with his arms until he finally got it off." (Obviously a huge thing for us)

Fri, June 30
"... I must have the baby blues because every little thing mad me cry today ... They didn't move Nate to a crib today, and he still has oxygen, and they're worried he poops too much and something is wrong, and the ortho said his knees don't extend all the way and he might need braces, and he has to have another MRI tonight because they did the last one wrong. It just wasn't the best day. But he's so cute and I can't wait until he's all mine. It feels like he belongs to the hospital now. Okay, time to pump again."

Mon, July 3
"This morning we were so hopeful--when I came in, Nate didn't have his O2 on, and he was doing great! When the doctor came in, he suggested Nate go home today! The nurse and I both said "TODAY?!" So he said maybe Wed or Thur since tomorrow is a holiday. Everything was great until I fed him and we had to turn the O2 back up. And then his temp was low all day, and they had to put the lid back down on his isolette and turn the heat back on. In my fragile emotional state, that was enough to send me over the edge. I can't believe we took two steps back when we're so close to him being ready to leave I don't want to rush this, and I certainly don't want to take him home before he's ready. I just want him to be well NOW. And I want to take him home when we don't have to have ll these wires hanging off of him and nurses to deal with. ... He has a really bad diaper rash, and Dr. Walsh doesn't think he can feel it because of his SB--which is hard to hear.... I am emotionally drained from the last 3 months. They seem like a lifetime."

Sun, July 9 (talk of keeping us until the next week because of apnea spells. My mom and I were getting really homesick.)
"I'm trying to figure out God's plan for this whole situation--which I realize is silly and futile. One day I'll understand maybe. Is He trying to prepare me for a life of long hospital stays? Is He teaching me patience and compassion? It's so hard and it hurts so much--will there be a reward? Or at least some rest after this? I know this is part of his plan for me, but it's hard not knowing why."

Mon, July 10--we decided to move him to UofKentucky NICU
"Nate is becoming more alert everyday. Sometimes his eyes are wide open, taking in all his surroundings. Sometimes he can't control them and they roll aimlessly. He's a great eater and always seems hungry. No matter what time of day, he's smacking his lips and sticking out his tongue. He's stable enough now that we can just hold him for longer periods without worrying as much about his oxygen or heart rate, although we can't seem to stop glancing at the monitor every few seconds. He HATES to be burped. He grunts the entire time to let us know how unhappy he is. He also hates having his clothes changed, but that usually happens about 3 times a day because of accidents during diaper changes. Can't wait until I can hold him all I want and see him all day long."

Thur, July 13
I'm finally back in Kentucky. My mom and I got to UK about an hour after Nate got here in the ambulance. He had missed a meal and he at A LOT the next two meals. Whereas he usually eats 60cc's, he ate 70 when he got here and 82 when I fed him! He would have eaten the full 3 ounces but we were afraid he'd get a belly ache. He was hanging onto the bottle like I would take it away from him. ... After staying awhile at the hospital, I went home for the first time in months! It looks so pretty to me now! And I saw the nursery for the first time. I can't wait to get him in his crib."

Fri, July 14
When I got to UK this morning, the nurse told me Nate had moved down the the nursery to make room in the NICU for the sicker babies. I found him downstairs in the nursery. I told the nurse I was really uncomfortable with trying him out on room air without a monitor to say how he was doing (duh), so she gave me a "bag" to blow oxygen in his face while I fed him!"

That entry stopped there because I had to go take care of Nate that second. I picked up the rest of the story on Sunday, July 16.
"So the rest of the story for Friday is that Nate was moved to another room and put on a monitor, and he did really well without o2 most of the time, but he was having low desats to the 70s and even 60s! I've never seen them that low. I kept asking the nurse if he needed to be back on the oxygen, but she insisted he was fine if he bought them up quickly. It was chaos down there in the nursery. This nurse had two discharges, including a couple that didn't speak English. It took 3 hours for the interpreter to show up and in the meantime this nurse just screamed at them in English--because we all know that people can understand a different language better when you say it louder. She was paying no attention to Nate, on a day when he needed someone to constantly evaluate whether he needed the oxygen. Normally he lasts only an hour before they put it back on him, but he had gone all day--probably because no one was there to say he needed it back. I was ALARMED, and I felt so helpless there by his crib because the nurse would not listen to me. At Vanderbilt, he would have been back on oxygen by then. So I asked to talk to the doctor--which I'm sure made her mad. Dr. Reynolds came by and I told him about the desats. He couldn't look at Nate's previous levels on this ancient machine, and Nate was in the 90s when he walked in, so he basically told me (in front of the nurse) that it was my job to make milk and worry, and it was the nurse's job to watch the monitor. But she wasn't watching it! So Blake came later to feed him, and while Nate was eating he had desats so low his lips were turning blue. Instead of putting the cannula back in his nose so he could eat, the nurse BAGGED HIM 3 TIMES. We had to leave because of the shift change (the nurse had to tell the night nurse how much trouble I had caused), and I was scared to leave him there to go home. Were they going to leave him off the oxygen all night? Could this cause long term damage? Was anyone going to pay attention to him in all of that chaos? When I got home I called the Vanderilt NICU to see if I was overreacting. The nurse said that if I didn't feel like they were taking my concerns seriously, I needed to let them know or get a second opinion. Because it was Friday night, I couldn't exactly call our pediatrician whom we've never met. I decided that maybe the problem was just the day nurse and that I should call the night nurse and tell her how concerned I was. She was rude from hello. I told her I knew she was busy. "Yes, I have four babies to feed right now." Well, that's what I wanted to talk to you about. I'm concerned that Nate needs oxygen while he eats and he didn't get it earlier-- "Ma'am, would it help you to know that I have over 20 years experience as a nurse?" I'm sure you're a great nurse, but I know that if Nate is pushed too hard, he'll backtrack... She interrupted everything I said and WOULD NOT listen to me. (Well, she knew I was a troublemaker from the last nurse--my reputation preceded me.) After she had put me in my place, or tried to, I dropped the politeness and said, "That's it. I'm moving him to a different hospital." I called a charge nurse and told her everything that happened, and s had Dr. Reynolds call me. He took up for his nurses again but I got through to him my discomfort with having Nate in such a crazy state. So he moved him back up to the NICU. Ever since, he has had great nurses. In fact, his nurse that night put him back on oxygen after desats to the 80s and 70s! Ha--told her I knew what I was talking about. Then yesterday Dr. Reynolds told the nurses not to try him without oxygen to give him a break (as I suggested). So, I threw my first mama fit. I didn't want to be rude, but I did what I had to do for Nate."

Monday, July 17
"...He's coming home tomorrow, probably with oxygen. I wouldn't mind it so much if they didn't require it for a month. A whole month of oxygen tanks, battery packs, cannulas, and false alarms. But I'll have my baby. And I won't have to visit a hospital again for another month. The hospital is its own little world. People trudge around like zombies, with vacant stares. In the NICU, moms (and sometimes dads) try to piece together some kind of normal life--singing quietly to their babies, touching them through the holes in the isolettes, and breastfeeding or doing "kangaroo care" behind curtained screens. They stay as long as they can, usually just sitting beside the bed while their babies sleep. When they finally have to leave feeling guilty, the nurses always ask "Are you coming back?" I'm sure they're asking for practical reasons, but it always feels judgmental to the moms. Some of the parents get to know each other. Then when one of their babies gets to go home, it's even sadder for the parents left behind. Leaving tomorrow will be bittersweet. We'll be ecstatic and relieved to bring Nate home after 3.5 weeks, but disappointed that his health concerns aren't completely over. Sometimes it's hard to remember to count my blessings, but I know I have more than I can count."

Tue, July 18
"Nate is home! Finally! He's 3.5 weeks old, and in a way he feels older, but then again his due date isn't for almost another month.... This morning we got training in baby CPR and with an apnea monitor and oxygen tank. I had to force myself to pay attention because my mind kept saying "This is scary! I don't want to do this!" The monitor is especially scary--and annoying and loud! ... When we got home, Maggie was pretty interested in sniffing Nate, but she was good. I fed Nate while Blake made a Dr. appointment and did other chores. After he ate, I was able to just lay on the couch and cuddle with Nate--something I've been waiting to do since before I got pregnant. It was wonderful."

June 25, 2010
Fast forward 4 years to today. Minds in Motion had a parent day where we could come see what the kids have been doing all month, and this same baby I had worried so much about ... did a dang HAND STAND. He needed a little help holding his feet on the wall, but it was one heck of a hand stand. And his mama cried.

Happy 4th birthday to my miracle "baby" who is no longer a baby.