My daughter was born with hydrocephalus and a few other problems, would be cool to talk to other mothers that have a child with the same as my baby girl

Lizzy - posted on 01/29/2013 ( no moms have responded yet )




I know exactly what it’s like. I went into preterm labor at 31wks they flew me to a hospital almost 6 hours away from my home town! My dad, step mom, my boyfriend, my little brother, and my best friend all jumped in the car and hit the road after they loaded me up in the plane. Once I got there they made me stay on "high risk" bed rest for about 16 day. My family stayed for a few days but had to go home due to work, school, ect. I was stuck in this hospital, alone, scared, I wanted to go home so bad. I was so homesick. It was very hard, depressing, I was miserable. Not to mention I was only 18 years old at the time. Finally my dad had come back and his girlfriend talked them into releasing me. But I had to say close to the hospital. So were stuck in a city (a huge city compared to where I live) Staying from hotel to hotel, We came across some type of apt where u pay by month and has simply what u need in there (a pan to cook, a couch one small bed....ect) Let me tell you very expensive! So thankful I had my dad to help me out. Were staying there about four days and my water broke, although I didn't know. It was leaking little by little. So it didn't even cross my mind. Later on that night my dad had left to go to and IMAX movie. (Very long movies) well they came back due to it being closed that night. My feet were huge! Well than the pain begin, little pain from time to time, started getting a little stronger, and I was leaking more fluids from before I finally decided to tell my dads girlfriend. We get to the hospital and they had to do some test and what not and sure enough I was in labor My baby girl was ready to show herself to the world at 34wks, I had to have a C-Section (due to health problems with baby I will get to in a bit) Anyways, they start getting me ready and get me into the OR. Finally get everything ready and they began, my boyfriend finally got to come in there with me. Very shortly after about 5 minutes I hear the DR say "It's a girl, she's out" But I didn't hear a cry a noise from here or anything, (There were a lot of extra people in there with us) and they start rushing around, at this point I’m getting scared, No ones telling me anything. I finally heard a cry. Later after I was in the recovery room my bofriend had told me he did she her and her little body was purplish, he said he didn’t want to say anything at the moment to me due to the way I react to something’s. Well the umbilical cord had been wrapped around her next. So at 2:42am on March 24, 2011 my baby girl Miss Morgan Jennifer came into this world already having to fight for her life. I saw a glance of her and they took her right to the NICU. It sucked I didn’t get to see her for almost 2 hours after she was born. Finally they took me to see her, I looked at her and my heart had just broken. To look at your very own child laying there hooked up to 10, 15 different tubes, machines, IV’s. Let me tell you it literally BROKE my heart. Before Morgan was born I new she was going to have health problems, I didn't know what to expect though. So all I could do is so for the best, I had DRS telling me I will be lucky if she even lives a week, after she was a week old they said a month, when she was a month old I had one tell me I'll be lucky if she lives a year. Well hears Morgan’s story and what she has been through in her short life of 22 months. Morgan was born with hydrocephalus, when she was born her body was at 34 weeks and her head was measured at 40 weeks. So yes she did have a bigger sized head, I had NO IDEA what to expect, but when I seen her for the first time it was nothing that I pictured in my head. But no matter what was going to happen, what she looked like, that little girl was absolutely PERFECT in my eyes, to me she is TRULY a MIRCLE baby, who survived a lot, a lot that witch the dry told me she had very low chances of surviving. Also Morgan was born with esophageal atresia; witch is where the esophagus and stomach aren’t attached. When Morgan was a day one she went through her very first surgery and they got those two things connected. Before they connected it they had her on a feeding IV, afterwards they still had her on the IV for a week or little more, than put a feeding tube in through her nose. That didn’t last though because she would freak out and throw her arms around and some how manage to rip it out. So they finally started her on the bottle. They could never get her to latch on, so they tried a different nipple and to this day almost two years she still uses that nuk nipple only nipple EVER. (Not to mention I tried ever nipple and bottle out there). Back to the hydrocephalus, she went though surgery a few days later and had a VP shunt placed. She will have that shunt for the rest of her life. Right after surgery we had to leave the hospital to catch a train back home, IT’S THE HARDEST THING EVER to have to leave your child in a city ALONE lying in a hospital. Since I had gotten flown there we had no car to get around and the taxis were starting to break me! So had to go home for a couple of days to get new clothes and to get my car to drive back there. I was so happy to be back there with her. Finally bringing her home a day before she’s one month old. Just in time for Easter! At this point EVERYTHIGS going great. A month later things started going down hill. One night Morgan was eating her bottle while her dad was holding her. She started choking and she turned blue. I thought that maybe she had just swallowed wrong. The next night the same thing had happened, so I decided to take her to the ER. They did nothing there but give her a steroid shot. We went home and it happened again. Well Morgan’s 1 month NICU release appointments were coming up. So when we met with the DR who did the surgery, it wasn’t the actual DR who did it, the DR who did the surgery was out of town so we met with the resident DR, I told him what was going on and that she had been choking and turning blue and that DR didn’t once get up out of his seat. Didn’t touch her, didn’t examine her NOTHING. So we drive 6 hours back home and that night it happened again. I sat up with her all night long and just watched her sleep and made sure she was ok. Well once again the next night it happened AGAIN. I was fed up and I KNEW there was something wrong so I brought her back into the ER and the DR kept her. The next morning I get a call telling me they were flying Morgan to Minneapolis within the next 20 minutes. So I get to the hospital, there’s a weight limit on the plan so I couldn’t fly with her. The next morning we took off and headed down there also, here the WHOLE TIME where they had sewed her esophagus and stomach together was obstructing witch mean it was starting to close up, minor surgery and she came home with us the next day. 8 days later Morgan woke up with a very high fever, I was new at this. NEVER even heard of a “shunt” before. Well all she was going was crying and burning up, fever off 103.3 so off to the ER we went. I sat in the “waiting with her for almost 3 hours holding Morgan walking back and fourth and her just screaming. Finally we get called into the back in a room. DR walked in and LOOKED at her DIDN’T even touch her, he looked at me and said he would be right back and that he was going to all her DR at the U of M comes right back and said that she had been accepted and they were flying her there. Morgan got there and right away into the operating room to get the shunt out of her head. Her shunt had gotten infected. DR told me we’re luck she got there when she, if the infection could of gotten in her blood she could have killed her.
After the shunt came out they put an external shunt in. The nurses had to drain the shunt manually with there own hands. As were driving down there I call an let them know were coming. Well earlier that morning Morgan had a seizer and no one wanted to call and tell me. We get the hospital an up the room she’s in, the nurse had left and I was standing there with her. She started twitching real bad. And she started having another seizer they thing the nurse drained to much fluid at once and that’s what caused her to have them. She had to stay in the hospital 21 days before they put the new shunt in, they did that and the next day she got to finally come back home. Since then she has been hospitalized once, for RSV. She’s had one slight surgery to put tubes in. Morgan’s been doing GREAT she’s 22 months old and Morgan doesn’t walk. The DRS ALSO told me she would probably never walk or crawl due to a SMALL cerebellum. Well Morgan crawls EVERYWHERE she didn’t start crawling till she was after a year old and like I said she still doesn’t walk alone by herself but she does walk along walls, holding on to objects so I know one day, it may be soon, it might be a long time but ONE day she will walk The DRS told me all I can do is “hope and pray” that she crawls and walks. Well I can’t wait till that day comes when we walk into the hospital and Morgan’s WALKING next to me, I can’t wait till I can prove them wrong. Also like I said Morgan is 22 months old and she only weights 20 pounds her 5 month old brother is almost weighing more than her. But it doesn’t matter in MY eyes Morgan is perfect, she is my miracle baby. One more thing remember at the beginning I had told you the DRS told me I’d be lucky if Morgan lives a week, a month, a year??? Look at her today SHE’S perfectly happy, healthy, and a very ACTIVE little girl and in just two short months Morgan will be TWO!

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