Pregnancy itself was particularly uneventful. We got pregnant probably about the first of November, and NEVER even knew about it. I was never once sick or nauseous. I made an appt with Dr. Holmes in January and thought I was maybe one month along---turns out I was already 2 1/2. I had already made it through basically the first trimester safely. We actually waited to tell the parents in February so that it could be a birthday surprise for Court's mom. We told Pam and Byde by playing the game Cranium with them one evening. I had been nervous to tell anybody becuz of my lupus (which brought a huge risk of miscarriage) but it really was amazing how good I felt. Never nauseus, only tired. Every doctors appt went absolutely normal. We did our ultrasound and discovered we were having a girl. At the start of my 6th month the swelling started.
By the end of the day, I would develop what Courtney would call 'cankles'---where my calved just suddenly turned into feet. Some days looked more swollen than others, but after a nights rest of sleep they would always disappear. During the last week of April they really started to get bad. So did my face and hands and arms. My hands began falling asleep and becoming numb all of the time. Pain would radiate up my right arm and it got to the point that it was too painful to even play the piano. Dr. Holmes had seen my swelling on a previous visit, but he didn't seem overly concerned. My next Dr. Appt was scheduled for Monday May 6.
On Wednesday May 1st I was at Pamela's doing piano lessons when the mother of my student (her name is Lisa McClure) commented on how concerned she was with my swelling. Most everybody said that swelling was normal, but Lisa said not usually that much til the last weeks---and I still had 3 months to go. Byde happened to have blood pressure cuff at his house, and so we took my blood pressure and it read something (wish I remember the top numer) over 106. That didn't mean anything to me at the time (I now know that normal for me is 110 over 70) but Pamela suggested that I call Dr. Holmes. I paged him, and he suggested that I try and work my way in Thursday morning. I HAD planned to do my glucose testing the next morning anyways, so I figured I could go to his office when I was done---since they were right next to each other. That night at bedtime I noticed that my chest felt a little funny. I thought that maybe it could be heartburn or something like that so I wasn't too concerned. About 2:00 a.m. I woke up with some really intense pain in my chest. I got up and worked on the computer and watched some T.V., but it kept getting worse and worse. I got out my 'what to expect what you're expecting book' and figured I would read up on toxemia---since that is what Pamela was so worried about. As I was reading, I noticed words like swelling, rapid weight gain, high blood pressure, gastro-intestinal pain, and spots in vision. These were all things that in just this one day I felt like I was encountering. I didn't know what to do. Courtney was scheduled to leave for a business trip that morning and would not be back until Sunday afternoon. My book warned about seizures and comas, and 4 days without my husband around did not sound very comforting. Court got up about 5:00 a.m. and found me up and crying. He asked if I wanted him to stay and I said I didn't think so. He then asked if I was just talking myself into being sick because he was leaving me for a couple of days----well that just made me MAD, so I told him to go on his trip and I would be fine. I jumped in the shower at about 6:30 and everything seemed to feel a little better.
My lab opened at 7:00 so I got there on the dot, drank the glucose, did my lab work (after waiting the obligatory hour), and then headed over to Dr. Holmes' office about 9:00. I apologized to Terry(the nurse) and said that I had some swelling and my mother was concerned about it. She smiled as if to say, 'aaah, silly mothers'. She checked my blood pressure and was a little concerned becuz normal with her was 100/60 and I was reading 130/90. She had me pee in a cup and then gasped because I was leaking protein at something called 3 plus---so do not know what I am even talking about here. She immediately left the room and interrupted Dr. Homes in whatever appt he was in and told him that he needed to come in quick. He started freaking out. He said I was going to the hospital IMMEDIATELY and that I needed to call my husband---who at this point was somewhere in the air flying to Florida.
I called Byde and he said he would get a message to Court. Meanwhile Byde and my brother David met me at the hospital and game me a blessing. I was barely even walking into my room in the antepartum wing that nurses were giving me shots to help this babies lungs develop faster. The rest of Thursday was pretty uneventful. I took a hydrotherapy bath to try and bring down some swelling (which sounds relaxing, but isn't when you are attached to an IV and have to hang your arm out of a huge metal vat that you are laying in). And I had a TON of blood work taken. They started pumping Magnesium Sulfate into me---which is one of the worst encounters in my life---and we WAITED. Friday is when the headaches started and they THROBBED. We learned from my blood work that my liver and kidneys had basically stopped functioning. My liquid intake was limited, but Dr. Holmes thought that it all just might be a lupus flare and that maybe I could go home in a couple of days---and would just be on bed rest for the remainder of the pregnancy. The perinatologist Dr. Sawaii, however, said that I had preeclampsia and that I would be living in the hospital until this baby came. They then sent down Dr Watterkotte---who I refer to as Dr.Death---and he proceeded to explain all the horrible things that could happen to this baby if I did not try and keep her inside of me. Pretty much every second you can keep a baby in the womb really does matter. I informed him that I didn't think I was feeling physically ill enough, and he said he didn't care and that probably no matter what, this baby would be born premature. How much premature he wasn't sure. I was so frightened, Court had still not made it back from Florida yet.
Friday and Saturday I actually felt pretty great. All of my bloodwork was going back to normal and Dr. Holmes was even talking about letting me go home on Monday (on strict bed rest of course) Saturday morning Court finally made it back home. On Saturday night I went to bed with a slight pain in my back, but I figured that was just from sleeping in that stinking hospital bed for three days. But Sunday morning I still had the back pain and it was starting to increase in intensity. It started working its way around front, and the pain I had had Wednesday night was back with a VENGEANCE. I can remember just being curled up in a ball on the hospital bed and just moaning and screaming. They started giving me tons of drugs to make the pain stop, but nothing could touch it. My protein in the urine shot up again and my blood pressure started rising. Courtney went to his moms house about 6:00 p.m. for dinner because they had finally given me a dose of something that made we really drowsy and I was finally resting. The nurses were not happy with him. He had just walked into the door at Maurio's when he got a phone call telling him to get back to the hospital and pronto. When he got back I was not doing good. The pain was getting worse and worse and my blood pressure was skyrocketing.
The interesting thing is that up to this point, the baby never once was under stress. Thats the crazy thing about Preeclampsia or HELLP Syndrome---which they officially said I had. Its actually only harmful to the mother, and if something happens to her, THEN it becomes an issue for the baby. So it is kind of a game of Russian Roulette of how far can we let things go, so that this baby can stay inside the womb for every possible second that it can. Of course if things go to far it could mean seizures, convulsions, comas---GOOD TIMES!
For me things started progressing so rapidly. When Court made it back to the hospital, Dr. Holmes was on the phone and he told him that more than likely we would be taking this baby out tonight! My blood pressure was now 200/121 and they told me that the pain in my chest was being caused by my liver and the placenta rubbing against a wall and causing it to disintegrate. Eventually the baby WOULD be under stress. At 7:30 they nurses came into the room and said, "Dad come with us." They took Court and outfitted him in scrub. Then they moved me.
I was awake, but I already had a lot of drugs in me from them trying to stop my pain. Everybody in the operating room was just a blur. Dr. Holmes must have sensed this, and came right up in my face and said, "Julie, everything is gonna be fine...this baby is gonna be fine." I know I had tears streaming down my face, but I wasn't sobbing hysterically or anything. I just kept saying, "No, no..." I don't think at the time that I really knew what was happening. They moved me over to the operataing table, gave me two different shots in my back, and everything went numb from the waist down. Court stayed right by me head and held my hand and just talked to me. He was amazing. He just stayed calm and kept reassuring me. I would have gotten hysterical , but Court stayed so strong for me, and that helped so much.
They had put up a sheet of course, so I couldn't see anything. But I felt someone tugging at my bellybutton. I figured this was them cutting me open. But I hear someone say, "The time on that was 1951 and then I heard the tiniest whimper somewhere in the room and I realized she was out! They weren't cutting me open, they were already stiching me up. They straight away took her up to the NICU, and at least Court was able to see her before she went up, but I never did get to until much later.
They took me to the recovery room for 4 hours trying to get my body to clam down so I still didn't go into seizures or anything. I slept through alot of it, and people kept walking up to me to ask questions or to poke me for blood or to set up IVs. They finally wheeled me up to see her, but I was still in my bed and it was hard to reach up into her isolette to even see her. She was so RED. She was so LITTLE--1 lb and 14 ounces. There were so many tubes everywhere, it was very overwhelming for me. I was able to reach in at least and touch her toe and her little hand. She was wearing a pink hat and Court made a comment about it. I know that the next time it was a turquoise one. Ü I thought of the name Sateen from the movie Moulin Rouge and it basically meant red satin. When I saw how red and soft her skin was (when I had been warned she would be very mottled looking and very fuzzy) I knew that it had to be her middle name. It took me a while to finally decide on the spellings, but we finally ended up with Delainee Sateen Fischbeck.
When they wheeled me back to my room it was about midnight. Right away they hooked me up to a breast pump and had me start pumping. I didn't think that milk would even come being 3 months ahead of schedule, but slowly it did come---little by little. This was all on Sunday May 5, 2002.
I stayed at the hospital til Thursday and then they finally let ME go home. It was very hard coming home with no baby to show. Delainee gets to live there for at least 4-6 weeks. She is the prettiest little thing. In pictures, without anything as a reference for size, you'd never realize how small she actually is. She looks like a normal baby. She has blond hair and long blond eyelashes. For as little as she is, she is actually quite long. Her fingers and toes look especially long. She can't cry or make any noise because she has a tube down her throat, but as soon as that comes out we will learn how she talks. The nurses open up her isolette every 4 hours and try to limit her getting touched or handled to those times. They want Delainee to think she is still in the womb. So we are there at those times and help to take her temperature, change her diaper, and clean her face. And just talk to her and sing to her, and hold our hands on her. We haven't had too many 'downs' with her yet. She just keeps doing so good. I don't think she realizes that she came out to early. Ü So now we wait and we watch and we pray.
"Arrived 12 weeks early
I stepped up the date.
Here for the loving---
I just couldn't wait!"
Delainee Sateen Fischbeck; May 5, 2002; 7:51 p.m.; 1 lb. 14 ounces 13 1/4 inches long.
Delainee stayed in the hosital for two months. We still had her home a month before her actual due date---which was August 2nd! After the fact I went to the hospital I asked for her bill---or what it would have cost if I had no insurance. I was given a BOOK, basically, and on the last page....$294,000.00. Not quite a million dollar baby, but I will never complain about insurance in my LIFE!
The night Delainee was born. Notice her red skin---not normal for premies. And see what looks like a little maxi pad that Court is holding? That is her diaper--and it was still huge on her!
This was her first best friend. I wish you could realize how small this bear really is to appreciate how insanely small she was.
This was a WEEK after birth on Mother's Day May 12, 2002. This was the FIRST time that they ever actually let me hold my baby girl. Notice the gold band---COURT'S WEDDING RING.
Look how far we have come!
6 comments:
Ok, I wasn't prepared for that! My hormones, maybe? A miracle baby for sure.
Ok tears!! I have never heard her story before! What a special blessing!! And right now she is at McDonalds celebrating 7 glorious years!
I remember all of this. I was so scared for you. I remember crying at MCC when you had to go to the hospital and your dad came and gave me a notebook of music and said that you were not doing well. Then I came to see you on Monday and you handed me a picture and said, "Isn't she beautiful!" I had no idea you had had the baby! I remember workshop that year and how many times you went to the hospital. I am so glad you wrote out the story. What a great thing for Delainee to have. She is so cute!
Hi,
Here are some observations I have made, modern medicine says they are looking for a cure when they want money and yet they have not found a cure for anything in over 60 years, 0. Lupus is an autoimmune disease; these diseases are interesting and scary there are approximately 80 to 100 with another 40 waiting for a name and once you have one you get another, and so on. Medical science cannot explain why and has not found a cure for even one. You can trigger one of them just by having an auto accident, taking aspirin, medication or by starting a new exercise routine, even too much stress says latest research. Have you changed anything in your life, "Look for the root, it is in the basics beginning with what is on your fork, what toxins are in your body, what exercise do you do, what stress is in your life, what is your spiritual base". Scientific arrogance has led us down the wrong path we better stop and take a close look at what is happening. This month 144 new chemicals which are part of the Lupus problem will be added too industry with no oversight control at all. Autoimmune disease is the worst kind of contradiction; for a Lupus sufferer you are attacking your own body with your immune system, a world upside down. Here is a challenge, on a piece of paper write down as many diseases as you can think of then put them as a search on Google with the word epidemic, you will see that almost all of them are. God bless you in your search.
Sincerely
Paul
That is an amazing story Julie. I knew she was a preemie, but WOW. She most definitely has a purpose in this life and was a fighter for a reason. She is such a cutie (then and now). If you ask me, there is just something special about our Delainee/DeLanee's!!
Holy cow. Did not know all that. And it is a miracle that she is as amazing and well as she is. You really do go for the drama, don't you?? :)
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