Hello 
My name is Lacy and my gastro babies name is Bostyn Lillie. I lived in Idaho during the pregnancy and now we both live in Utah and are doing very well. Our story is a scary one but I am writing it to hopefully help someone so don’t let it scare you.
I got pregnant November 14th, 08 when I was 3 weeks pregnant. I went to my first doctors appointment when I was 4 weeks along and they did the normal exam and bloodwork. My first ultrasound was when i was about 12.5 weeks along and they did a blood test thing where they poke your finger and squeeze the blood onto a paper (not sure what its called sorry). Well the results from that were abnormal so I was asked to come back in for another ultrasound at 13 weeks gestation. The ultrasound tech didn’t say a word to me about anything being wrong…instead I got a call from my obstetrician the next morning saying that the ultrasound showed what he believed to be Gastroschisis and that he was referring me to a Maternal-Fetal Medicine doctor 3 hours away. At that ultrasound the Gastroschisis was confirmed and I was devastated. I wanted a baby so badly and then people were telling me the baby wasn’t normal and all the things that could go wrong with her after birth. I didn’t know what to do but cry!
Well I got over the crying thing…I decided that it wasn’t going to change the babies diagnosis and that it couldn’t be helping my health or her health at all so I sucked it up and accepted what life had dealt me. Pregnancy went GREAT….as great as it could be for being pregnant during the summer months. I went to have an ultrasound once a month 3 hours away and had a regular doc appointment once a month like normal. At 30 weeks I started Non-Stress Tests once a week at my obstetrician office and the ultrasounds got bumped up to twice a month. At 33 weeks I received steroid shots just to be safe because Gastroschisis babies have a history of coming early. Sometime around 34 weeks my induction date was set for August 3rd. (due date August 12th) I continued having the Non-Stress Tests once a week until 36 weeks and they got bumped up to twice a week. At 37 weeks I was dilated to a 1. At 38 weeks I was dilated to a 2. At 38 weeks 4 days (July 31st, 08) I went in for my normal Non-Stress Test and as soon as I was hooked up to the monitor I started having contractions. Since my induction date was 3 days away my doctor decided to call my obstetrician in Utah and they decided it would be best for me to head down there that day. I called my husband at the time and told him I was on my way home and to get everything ready and we headed down to Utah to have our little girl. We arrived in Utah about 5pm where we then sat in the waiting room for half an hour while I was having contractions every 6-7 minutes while they found me a room. We got into our room about 5:30pm and I was started on pitocin. I would have been able to labor naturally but the babies heartbeat kept dipping too low for comfort so they decided to speed things along. I made it to 6cm dilated before I finally got an epidural. I really wanted to go without the epidural but since her heartbeat was dipping so low they told me that I should get the epidural so that my body would relax and I would dilate faster…otherwise I would probably end up in a c-section. So I got the epidural and my gorgeous baby girl was born at 4:46 am on August 1st, 09. She weighed 6 lbs and was 17 inches long.
When Bostyn was born she inhaled a large amount of mecconium. Every time they tried to suction her out they just got more and more mecconium. She ended up having 4 minutes of chest compressions and had severe hypoxia (lack of oxygen). I didn’t get to see her (that I remember) before they passed her through a window into the hospital NICU.
I ended up having a minor complication from delivery…my placenta didn’t detach completely from my uterus so I was in the delivery room for longer than usual while they manually detached the placenta (OUCH). That meant I didn’t get to the recovery room til later than normal and I couldnt get out of bed for quite awhile due to my risk of bleeding from the complication. I was taken to the recovery room where they brought Bostyn in so I could see her for a minute before they took her to the NICU. I couldn’t talk…I just stared at her tiny little body. A few hours later I finally got to get wheeled to the NICU at Primary Childrens Hospital (which is attached to the hospital where I gave birth) to see my love bug! I remember being afraid to touch her. She looked so tiny and fragile! Her intestines were in a silo and she was on a cooling bed to lower her body temperature so that her brain would require less oxygen and hopefully it would heal from the lack of oxygen at birth. She was on the cooling bed for 3 days.
At 6 days old Bostyn was taken into surgery to put her intestines back inside her body and close her up. I was told that there were no complications with the surgery. When I got to see her afterwards it was crazy to see her without something hanging above her. She was SO swollen and puffy from the surgery, pain meds, extra fluid and trauma. At 7 days old she was extubated, and had a CT scan to look at her brain which looked completely normal which was exceptional because of the hypoxia. At 10 days old the bandage on her stomach was removed and I was able to see her bare little tummy for the first time. At 11 days old she was moved from a warmer to a crib and taken off oxygen.
After that it was just the basic waiting process for her stomach and intestines started to work and move food through and digest. We went through tons of cyles of removing her anderson tube and putting it back in, G.I. studies, starting and stopping feeds, and emotional rollercoasters. On September 16th, 08 at 1.5 months old it was determined that Bostyn had an illeal atresia and went into surgery to fix it. They ended up removing about 3 cm of intestine that had blocked itself off. We then started then entire process of the anderson tubes, G.I. studies and feeding all over again.
For the rest of September, All of October and all of November that is all that happens. We would start feeds, Bostyn would throw up, we would stop feeds…..repeat. A couple days before Thanksgiving I was holding Bostyn and all of a sudden she started to scream. She would be totally calm and the next minute scream bloody murder and nothing could soothe her. They determined she had NEC…but none of the intestine had died yet. She just had air in the walls of her intestines…..nuemetosis (SP?). We thought she would need another surgery but it ended up that the 3 antibiotics and morphine took care of it. She was a very sick little girl…back in a warmer, almost had to be intubated again. It broke my heart that she was that sick all over again. Amazingly she recovered from that pretty fast and we worked up on feeds once again.
FINALLY THE BIG DAY CAME! We were discharged from the hospital on December 17th, 09. Happiest day of my life besides the day she was born! We went home with a central line (broviac) and an NG tube. We figured out during the time in the NICU that Bostyn’s body didn’t handle more than a certain amount of formula without stooling out and throwing up so we went home eating 66 cc’s every 3 hours. She had a big oral aversion though so she had the NG tube to gavauge whatever of the feed she wouldn’t take orally. We went home on TPN and lipids to make up for the calories she should have been getting from the formula. Everything went great until January 22nd.
Around 7pm, Jan 22nd Bostyn started acting odd. She was very cranky and just not her usual self. I took her temperature and it was 100.4. I gave Bosytn some motrin and got the fever down to 99.1 only to have it spike up again to 100.9 around 11. I cooled her with a bath and undressing her but they she started to breathe really really fast. It seemed like she just couldn’t take a full breath. By this point she was screaming and you could see a look of panic in her eyes. My boyfriend and I looked at eachother and immediately started getting things ready to go to the hospital. We got to the ER at midnight and say in the little room until 6 am while they did tests and decided she needed admitted. We got put into a room in the Infant Unit about 6:30 and later learned that she had a central line infection….bacteria in her blood. She was put on 3 antibiotics and her central line was removed just to be safe. (her central line lasted from 6 days old til almost 6 months old which is AMAZING). It is now January 27th, 09 and we are getting released from the hospital again tomorrow
I’m sure i’ve missed details here and there so if you have any questions feel free to ask. The best way to get ahold of me is to email me at lacyjo0817@myspace.com or go to myspace.com/lacyjo0801. Thanks for reading, and again this wasn’t meant to scare anyone….just to inform LOTS OF PICS ON MY MYSPACE!
. I also would like to know what labour and delivery was like ?? If someone could write back to me i would appreciate it .
