Bostyn's Story!
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!
Seven's Story
Hi everyone! My name is Brittani and I am 21 years old (20 when I got pregnant and gave birth to my gastro & only baby). We live in Maine. Here is my son’s story.
I got pregnant somewhere in the beginning of 2009. It was only when we were suppose to find out the sex of our baby that we found out about the gastroschisis. I went into my dr’s at 20 weeks and two things happened. One, I was told the baby was in an awkward position (backwards and upside down, only thing we saw was spine) and that there “was something potentially wrong” and I would have to make an appointment with the biggest OBGYN office in our state. I was scared. I had no idea what to expect, they just kept saying it looked like there was something wrong with the babies stomach but they wouldn’t tell me anything more than that. So I had to wait the entire weekend scared about what it could be. We make it to the appointment and they confirm and let us know our baby is a BOY and he has gastroschisis. I had never heard of it in my life, so I was shocked and worried. But I was told the success rate for it was 90 percent so after that I didn’t think much about it.
Once I hit 27 weeks however it got hard not to think of it because I was suddenly driving 40 minutes away 2 times a week for 3 appointments. I had two ultrasounds a week and one regular dr’s visit once a week. It was insane. We ended up with more than 50 ultrasound pictures and 2 whole dvds of our sessions. Then things got a little bad.
I was 29 weeks pregnant and I went in for a routine visit and they told me my amniotic fluid was dangerously low. Any bit lower they would of hospitalized me right then but they allowed me to go home on bed rest and LOTS of water. I also had to get the cortisone steroid shots that week. That scared me because it felt they were prepping me for delivery and my son at the time had just hit 3 pounds. But I went back a few days later and everything was ok. They did tell me my son had IUGR and wasn’t growing much at all.
From then on it was ok, still all the appointments and everything but I was ok and so was he. They told me not to expect getting past 34 weeks it would be a miracle if I did. And I did. I was 35 weeks and 5 days pregnant when I went in for an ultrasound and they told me his BPP score was 2/8. They took me right over to Maine Medical Center and hooked me up to machines and told me his heartrate was “ehh-ok” but it kept dipping instead of normal spiking it should have. They told me if it got any better I would be induced, if it didn’t – I would go right into ER c-section. And it didn’t so there I was getting prepped for a cesarean and I was SO SCARED. A normal day turned into the scariest one of my life.
On September 15th 2009, my son Seven Simeon was born. 4 pounds and 2 ounces, 15 inches long, 5 weeks premature.
From there he was taken almost immediately up to the NICU to get prepped for his surgery. I didn’t get to see him but a moments glance when they wheeled him out. I didn’t get to see the gastro or nothing, I was very upset about it. I was taken to recovery and only heard updates here and there. Finally at 7-8pm that night (he was born at 1:33pm) I was able to walk and heard he was out of surgery and into the NICU and I could finally see him!
I went up there and was shocked. He was SO little and fragile, and had tubes and wires and cords and everything coming from him. It was kind of unreal to me so I didn’t feel much honestly. But I was sad I couldn’t hold him. I could barely touch him. He had a big old tube in his nose, an IV in his hand, his central line on his chest and the hookups for the moniters. A huge bandage where they fixed his intestines.
The surgery was a success however, he didn’t need a silo or any surgeries after that. It went magically.
3 days past and he didn’t even mutter a cry mostly, he was really out of it on morphine. But that day I was told he was stable enough to get moved to children’s unit of the hospital and out of the NICU – I was SO happy. I got to hold him for the first time that day (and almost everyday after that!) From there it seemed to take an eternity but the rate of which he was recovering was miraculous. I was expecting a 2-3 month long stay in the hospital and surgeries and etc. but nope!
At two weeks old he finally made a bowel movement. The one thing we were all waiting for! And it happened ALL over his surgeons dressings, lol. From there the tube in his nose came out and was replaced by a much smaller one just to make sure he was digesting food. He was started on breastmilk through a bottle that started at 5cc’s and eventually made it to 55cc’s. He was gaining a little bit of weight. Everything was piecing together. Soon he was out of the incubator and into a crib!
On October 9th (24 days after he was born) we were released from the hospital and he was 5.2 pounds. It was the most amazing day ever! We had to go home in a carbed carseat because he was still too little for a regular one and kept failing the tests. But that was fine. And the only complication we brought home with us was that he was some really bad reflux. Puking alot and pain and it was bad but when we were home he slept on his boppy pillow so he was elevated. It stayed like that for awhile until he hit 3 months I stopped giving him his medicine, he was doing ALOT better.
And he started sleeping in his bassinet flat on his back. Haven’t had much of a problem since!
At his one month appointment he was 5.5 pounds. At his 2 month one he was 7.14 pounds. At his 3 month one he was 9.4 pounds.
He is now 4 months old and an amazing little boy. He has no belly button (which I think is awesome) and he seems right on target with development. He “talks”, is ALMOST sitting up by himself, gaining alot of weight, laughing, he is amazing. He’s mommy’s little miracle!
Thank you all for reading our story – I hope I help someone out one day with our information as everyone else did while I was pregnant and looking for some answers.
Here are some pictures. First is Seven at birth, you can kind of see his intestines. Second is Seven a couple days old. Third is his most recent picture of his belly. And fourth is a recent picture of him!
