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The struggles my husband and I went through when our daughter was born 11 weeks premature. |
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Hi! My name is Christy, I'm 28 years old and I live in tornado alley. Once my daughter is a little older I'll be going back to school to pursue my Psych degree. I've recently been through some major stuff and I want to share it with others. There's nothing like the turmoil of almost dying and having a premature baby in the ICU for eleven weeks. I had Eclampsia, which is described in more detail in my entries. Typically the doc will test for Eclampsia at 32 weeks or so, but I was struck with it at 29 weeks, so no one had any idea I even had it. So all you pregnant ladies out there: If you have a severe headache, go to the ER immediately. I had a severe headache the night before I had the seizures, which was a warning that my blood pressure was too high. |
| This is from September 23, 2007 Cadence is now in her new crib. She looks so cute. They put onesies on her now and she's almost at 5 pounds, so she looks so much better. They took the catheter out of her head, which I am so jubilant about. But then she got sick again. Her intestines are underdeveloped so at times she can't poop. If there's an infection, this can be a sign of a condition called NEC, which can be life threatening or cause her to have to have a colostomy bag for several years of her life. Luckily there was no infection and she is doing fine today. The eye doctor examines her once a week and she has ROP in her eye. Sometimes it can clear up on its own as she develops, but sometimes it can cause blindness. They watch her eyes very closely, and she might have to have laser surgery if it worsens. (Stevie Wonder was a preemie who had ROP, which is why he is blind.) She has another exam on Tuesday, so we'll see what happens. It's hard being at the hospital every day. Not just because I worry so much about Cadence, but because of the other sick babies. Since Cadence came to the hospital, two of the babies have died, one right next to us. There's another baby that's on life support and the parents have been given the option of unplugging it. They haven't made up their mind yet, so I hope I'm far away from the hospital when all that goes down. A few days ago they were performing surgery on the baby and the mom broke down so badly that the doc asked her to wait in the lobby. It's difficult seeing all the pain and the heartache and the stress. |
** Images For Use By Upgraded+ Only ** This is when Cadence held her Daddy's hand for the first time. You can really tell how small she was when you compare the size of his hand to her body! ** Images For Use By Upgraded+ Only ** This is the first time Chris held our daughter. He's a gung-ho, macho Navy veteran, but he wept! This is from September 17, 2007 About two weeks ago, the doc called and told me that Cadence had contracted an infection. This was particularly frightening for me because preemies have such a weak immune system, and it can be deadly. They administered antibiotics and now she seems to be doing well. She's over four pounds now. Today they are moving her to a regular crib and out of the incubator! They've also started bottle feeding her, instead of wholly relying on her feeding tube. I haven't been able to feed her yet because she'll have to learn how to take from the bottle. There's a chance she could aspirate, so for now the nurses are doing it until Cadence can eat without any risk of choking. Then Chris and I will be able to feed her. Hopefully soon they'll remove the feeding tube. It goes in through her right nostril and down to her stomach. I can tell she hates the thing because she's always tearing at it with her little hands, like she's trying to rip it out. Her platelet count has been low for several weeks and the docs are mystified why this is happening. Platelets are in the blood and cause the blood to clot. Hemophiliacs have a low platelet count. They are still running tests trying to determine the cause. They've given her plasma too many times to count to compensate. They have an IV in her head for this, which is painful to see. I can't wait until they get that damn thing out of her head! I've been spending just about all of my time at the hospital with her. My Mom came down and plans to be by my side until Cadence comes home. We're staying at the Ronald McDonald house, which is basically just across the street from the hospital. It's like living in a dorm, only costs ten dollars per night, and different companies bring in really good food for us to eat at lunch and dinner. Volunteers come in to clean and organize events and make sure we're fed. It's really a great environment. It's hard though because all of the other families staying there have sick children and tell their stories and so I'm not only worrying about Cadence I'm also worrying about their children too! I'm no longer on the blood pressure meds, which is wonderful. The doc gave me a clean bill of health last week. I'm feeling myself again but I'm still worrying about Cadence all of the time. The other day I was holding her and she stopped breathing. Alarms went off and the nurse rushed in and tore her from my arms. She only stopped breathing for about ten seconds, and its a normal occurance for preemies, but it terrified me. When it happened, she went still and red and I could tell she wasn't breathing. The doc checked her out and said she was fine, and then I burst into tears! She's doing so well the doc said she might get to leave the hospital early. This is excellent news but I'm trying not to get too emotionally invested in the idea. The last time I thought she was doing well she caught the infection. So I'm just going day by day and hoping she has only a few more hurdles to cross until I can finally bring her home. |
| This is from August 28, 2007 As for my own health, I am doing ok. I saw the doc today and my blood pressure is still pretty high. I have to stay on the meds for another two to four weeks, depending on how things go. I no longer have the proteins in my system that caused the seizures, but there will be residual effects for a little while longer. I am still at risk to have a stroke, but the chances are much less than before. Sometimes Eclampsia can cause kidney or liver failure, and the seizures can cause brain damage, but the doc says only a rare majority of patients develop these sorts of problems and didn't seem too worried about this happening to me. I am still recovering from my C-section. I have another 2-4 weeks before I will be fully healed. I've been forced to endure "bed rest" for the last month and it is driving me nuts. I can't clean the house, walk for long periods, or do anything very physical. The blood pressure medication makes me feel drunk so I can't drive. I have also been having some pretty serious migraines on a regular basis. This is particularly annoying because I have never been prone to headaches before. They're so bad I become extremely sensitive to light. Last night I was wearing my sunglasses in the house. I'm sure the headaches are stress related. It's been difficult coping with this situation. The only way I know how to deal is to not think about anything too much. If I ponder too hard I burst into tears. If I thought about it all of the time, I'd be crying 24-7. It's hard being separated from Cadence and not knowing how things are going to turn out. |
** Images For Use By Upgraded+ Only ** This is Cadence at 2.5 pounds. This is a journal entry from August 25, 2007 My baby Cadence has grown well over two pounds now. She is still having trouble with her belly (her digestive system is underdeveloped) and she had to have an X-ray yesterday. She will also stop breathing for brief periods of time, called Apnea, but this is normal for premature babies. Because her brain is immature, it forgets to signal her body to breathe. This is supposed to stop by the time she is 36 weeks or so. The good news is, she is gaining weight pretty rapidly. She is being fed intraveniously, but she is tolerating the maximum amount of food allowed. She can breathe on her own without a respirator. She can maintain her own body temperature, so I was finally able to hold her last time I visited her at the hospital. The nurses have said that soon she will be moved to an open air crib, and out of the incubator. This has been a difficult journey so far. I have been told that Cadence will take three steps forward and two steps back as she grows and develops. Hopefully my husband and I will be able to bring her home to us in about seven more weeks. |
| ** Images For Use By Upgraded+ Only ** This is Cadence under 2 pounds! It was taken in the Neonatal ICU in early August. Journal entry from August 13, 2007 My daughter is currently in the Intensive Care Nursery at the Children's Mercy Hospital in Kansas City. I have not been able to hold her. I've only looked at her through an incubator. If I want to touch her, I have to put my hands through these two holes in the sides of the incubator. She's breathing on her own, but there are tubes and wires all over her. One is for feeding, others monitor her life signs, like respiration, blood pressure, etc. Her diapers are about the size of a pack of cigarettes. I toss and turn at night worrying about her health. I'm still recovering from the C-Section so I can't be at the hospital as much as I would like right now. I feel guilty that my body literally almost killed my child. I miss her. I feel totally disconnected from her. I see other little infant girls in public or on tv and I get depressed. I'm still on the blood pressure medication. The toxins that my body produced while I was pregnant are still in my system, though the doc says the amount has greatly reduced. I am at risk for a stroke (or worse) if I don't take my medication. I have nightmares about the day I almost died. I remember what it was like, when I first went into the seizures. I don't trust my body anymore. I fucked up and read about what happened to me. How my eyes bulged from my head, how I convulsed, how I frothed at the mouth and then lapsed into a comatose state, and stopped breathing. I think about what might have happened if my husband hadn't been home when this struck. I think of what might have happened if my screams for help hadn't awakened him. I know it makes no sense to torture myself like this. To feel the guilt for what happened to Cadence, to wonder about how things might have been. I think about what it was like to wake up in the ICU and to find out that my daughter was gone, and that I could die. For some reason it's worse late at night, maybe because there are fewer things to distract me. The only thing that keeps me going is the hope that Cadence will make it, that we will be able to take her home in just a few weeks. (hopefully nine weeks) Otherwise I'm pretty much a wreck. I've never wanted a beer so much in my life! I thought I knew what pain was, but life just had to go and show me that I had no idea how profound pain can really be. There's a special kind of love a mother has for her child, it's a pure, untarnished love that cuts deep. My husband is the most positive and strong person I know. He refuses to even think that something will happen to our daughter. He refuses to let the situation sap at his spirit. He's too fucking stubborn. I have good days and bad days. If it wasn't for him, I'd probably be in a mental institution right now. Or on hard drugs. Or maybe worse. I guess time is on my side right now. I suspect things will get easier as the days and weeks bleed by. Once my daughter is home with me, safe in her crib, then I will release a massive sigh of relief and start my life again. Until then, I'm in a fucked up sort of limbo. |
| I almost died on July 28th of this year. First off, my husband, Chris, and I did everything right. We’ve been together seven years, and married for five. We own our house, my husband has a well paying job, and our marriage is stable. We agreed that we wanted a child, and when I became pregnant with our daughter, Cadence, we were thrilled. I was seven months pregnant on the morning of July 28th .I woke around 8:00 but I was feeling strangely. I was dizzy, with some serious vertigo, and when I tried to grab the doorknob to go into the bathroom, I kept grabbing air instead. My depth perception was way off. I was frightened, and went back into the living room and lay down on my couch. As soon as I lay down, my eyes began to dart back and forth rapidly, and I couldn’t stop them. Then my arm began to thrust back and forth, and I couldn’t stop that either. I screamed for my husband, and that’s the last thing that I remember. I came to a couple of times. Once I was in a hospital room, and there were several people staring down at me. I became frightened and tried to move, but I was restrained, which only terrified me even more. The next time I came to I was about to have an emergency C-section. I roused just in time to have a massive needle stuck into my spine. The third time I became conscious, I was in the ICU. I realized that my daughter was gone. My husband was beside me and I could see the worry on his face. I asked him what happened to Cadence. He said she had been life-flighted to a children’s hospital in Kansas City. She was born 11 weeks premature, at only 1 pound, 9 ounces. I didn’t know it at the time, but I was on the verge of death. I have a rare condition called Eclampsia. During pregnancy my body produced chemicals that caused my blood pressure to skyrocket. My blood pressure was so high that I had three massive seizures. If Cadence had not been delivered immediately, we both would have died. I was still in critical condition. My body was swollen, and my husband was afraid to touch my hand because he thought my skin would split. (Eclampsia is mysterious, no one knows what causes it or how to prevent it) After three days in ICU, I was moved to a regular room. I had IVs and a catheter, and I was high on morphine and liquid valium. If it hadn’t been for the drugs, I would have been in a serious panic. I cried everyday because I was worried about my daughter, and I wanted to see her. Finally after six days I was released, but my blood pressure was still too high. I had to take blood pressure meds because I could potentially have a stroke. My doctor warned me not to go to Kansas City to see Cadence just yet, because he was afraid the stress of seeing her would give me a stroke. I waited three long days but I couldn’t wait any longer. We were in constant contact with Cadence’s nurses, who said she was “feisty”, but I still had not even seen my own daughter. The following entries are from my private journal (a black spiral notebook with tear stains) |
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