First baby born with Gastroshisis.
Finding out we were having a baby when I was only 19 was a big shock, especially when I was on the pill and we hadn't been together long.
When we came round to the idea we couldn't be more excited and we were looking forward to our first scan. The scan itself was amazing to see our own real little baby growing inside my tummy. The sonographer wasn't the most welcoming, she barely spoke and then at the end asked us to wait in the room as she thought our baby might have something wrong.
We waited for what felt like 20mins but was only about 2 mins, to then meet a lovely lady from the Fetal Unit. She explained that our baby was showing to have Gastroshisis and we would need to have some more scans throughout the pregnancy to check the growth and see how baby is doing. She was absolutely loving, unlike the last lady, and she explained everything we needed to know. It wasn't Life threatening and their shouldn't be any lasting effects once all operations are finished. Still being so young we were quite taken aback but purely because of the way the sonographer had just left us and basically told us our baby had something wrong!
Gastroshisis is a birth defect where the bowel grows on the outside of the body through a hole either near the belly button or on the belly button (Jacob's being on his belly button so he doesn't actually have a belly button). It can cause growth of the child to be slightly smaller than the average child and can cause some feeding problems and tolerance from what we were told. We were also told how as much as it is obviously a huge thing to go through, on a scale of 1 to 10, its one of the ones that is easily solvable. We were told that during the labour we would need to have quite a few people in the room, surgeons, midwifes the lot as they will need to act quite fast once baby was born to reduce the risk of infection and to get the ball going in order of operations.
Throughout my pregnancy I had many scans, too many I cant even remember and at one point baby was borderline small. But since Scott and I are both very tall, he quickly caught up and became above average which they said was amazing. The reason for all the scans and tests were to check on how dilated the bowel was as it very common for it to swell which can cause complications with birth and can prolong the recovery time as its harder for a swollen bowel to fit back inside a tiny tummy. Luckily for us, our baby only had 1 loop that was swollen which was amazing news for us as we were looking at a more positive recovery time. There are many baby's who are born with this condition and have severe swollen bowels and have been in hospital for months. So for us we felt very blessed for us to be on the lower end of the scale! I was told that I was only allowed to go until around 38 weeks pregnant as in the last 2 weeks is when babies usually put on all the fat and weight and this can cause more complications in labour with the bowel being on the outside. From around 34 weeks pregnant I had to go twice a week to have his heart rate monitored to check that he was doing well and wasn't under any stress. But 50% of babies with this condition can be bored before 38 weeks pregnant on their own... this was scary as once they told me I was 32 weeks and they said that baby can come anytime from now!
All was fine until I reached 36weeks +5 days pregnant and the movements started to slow down and I realised in the afternoon that I hadn't really felt baby move at all that day. This had happened before and I did the usual routine of drinking something really cold, eating, having a lie down, bath etc.. and then I felt movements. But this time was different... nothing was happening! I went into hospital around 8pm that evening and went on the monitor to find that his heart rate was steady a little lower than expected but consistent he just decided to be a little lazy! I had high blood pressure so they decided to keep me in over night to monitor me and see how I was doing. Once all those evening tests had been done and the decision was made it was around 2.30am and I was finally taken to the ward to sleep but told they would be round at 6am to start the tests again for the day - didn't give me much time to sleep. Obviously pregnancy doesn't allow you to have the best sleep and my restless legs kicked in that morning so in total I got around 1.5 hours sleep before I was woken up to have my blood pressure and put back on the monitor to check the heart rate of bubs.
I was told not to eat as just in case they decided to induce me that day it would be by C-section. Obviously a pregnant lady can get very hungry so I ate a few odd bits throughout the day as I wasn't convinced I would be going into labour that day and I didn't want to have a C-section, not because of any reason other than the thought of being cut open makes me a little queasy. Time was going so slowly and none of our family knew that we were in the hospital as we weren't entirely sure what was going on so we didn't want to worry anyone until we knew exactly what was happening.
Around 5pm they told us they were going to do one last test as he was doing okay, but one last test to confirm everything was fine and if it was we were allowed to go home and the continue the weekly checks and to come back for induction at 38 weeks. It got to 6.20pm and all of a sudden my waters broke, contractions came out of no where and were soo strong 2 minutes apart. The decision was made by our baby that he wanted to come and see us, he had enough on being monitored!
Calling the midwifes in and saying to them that no need to test anymore its happening, all systems were ago! My labour was so quick even though it felt like a lifetime (hats off to those with long labours) every time I said I needed to push I had lots of surgeons running in the room which upset me as all of a sudden their was around 12 people in this tiny room and apart from me, Scott & the midwifes, everyone just seemed to be so casual. I knew there was going to be a lot of people but in the moment with all the emotions, everything just got to me. The only person I could really focus on was the student midwife, who I had met before and I was so happy to have her there as well as Scott and I just almost felt that I was definitely in safe hands.
Once he was born at 10.05pm, he was wrapped in cling film to keep the warmth in and wrapped in lots of towels, quick 2 minute cuddle and then whipped away to go straight down into the Neo Natal Unit. a couple hours had past and once I had been stitched, bathed and fed and he was ready, we headed down to properly meet our baby for the first time!
It was incredible, he was so perfect.
His bowels were held up in what looked like a sandwich bag, and with the hole being a nice size, they let gravity take its course and let the bowel naturally fall back into the stomach on its own with minimal help unless needed. They said it can take up to a week for the bowel to fully go in but for us, Jacob's bowel was fully in by the end of the 1st day. I think the fact that he was a long baby, helped and the fact that it had only had 1 loop that was swollen. The next stage was clearing the bowel out and getting rid of all the gunk that was inside. This meant that he was on a nutritional drip as he wasn't allowed to be fed until his bowel was clear. We had our first proper cuddle when he was 4 days old. It was amazing, he was so small and skinny and he was just so precious! He had all these wires coming out of him but he was just so perfect.
At around 2 weeks he was allowed to have food, I had been expressing as I had wanted to try breastfeeding. I couldn't breast feed with him but expressing was working. We were told that babies with his condition typically do not take to breast milk as it is very rich in protein and their tummy's struggle to handle it. We were also told that he wouldn't take to Formula and would probably have to go on prescription milk but we were allowed to give all a try. Our little chunk loved breast milk he took it amazingly! We had to teach him how to eat and he was only allowed small amounts to start building up to a full bottle.
Altogether he was in hospital for 3 weeks, which is around the minimum time that they are typically in hospital for. Sadly many babies with this condition are in for a lot longer due to many reasons, the bowel not going back inside properly, eating and many other reasons. We were very lucky and definitely felt very blessed and couldn't wait to get our baby home to start life as a family together.
Jacob took breastmilk, Formula and even hungry baby milk to then have to start feeding him at just 3 months old under the guidance of his consultants at the hospital which he still has to visit now just to check how he is doing. He has reached every goal post they has said might not happen and he is such a funny little character and you would never know he ever went through all of this at birth. He does still have a hernia now, but that is due to be sorted between the ages of 4/5 and hopefully they will be able to make him a bit of a belly button as he just has a hernia where a belly button should be.
I am very proud of everything we have been through and Jacob will always be so special to us, along with the birth of our new baby Thomas, Both very different experiences within the pregnancy and labour but that's what makes them both so special and although Jacob still has another operation to come he has done so well and is growing so fast!
Has anyone else either had this condition or had a baby with this condition or any other conditions that you would like to share?
I cannot thank and be so grateful for the NHS, they took such good care of our little boy, and gave us all the information and care that we needed and for that we will be forever thankful for every single person who we came across in the care of Jacob they were all so amazing!
** I decided not to share the intimate photos of the procedure as I feel that it isn't something I want to put out for everyone to see, it is something that we want to show Jacob when he is older and its for him to decided if he wants to share these photos.**
When we came round to the idea we couldn't be more excited and we were looking forward to our first scan. The scan itself was amazing to see our own real little baby growing inside my tummy. The sonographer wasn't the most welcoming, she barely spoke and then at the end asked us to wait in the room as she thought our baby might have something wrong.
We waited for what felt like 20mins but was only about 2 mins, to then meet a lovely lady from the Fetal Unit. She explained that our baby was showing to have Gastroshisis and we would need to have some more scans throughout the pregnancy to check the growth and see how baby is doing. She was absolutely loving, unlike the last lady, and she explained everything we needed to know. It wasn't Life threatening and their shouldn't be any lasting effects once all operations are finished. Still being so young we were quite taken aback but purely because of the way the sonographer had just left us and basically told us our baby had something wrong!
Gastroshisis is a birth defect where the bowel grows on the outside of the body through a hole either near the belly button or on the belly button (Jacob's being on his belly button so he doesn't actually have a belly button). It can cause growth of the child to be slightly smaller than the average child and can cause some feeding problems and tolerance from what we were told. We were also told how as much as it is obviously a huge thing to go through, on a scale of 1 to 10, its one of the ones that is easily solvable. We were told that during the labour we would need to have quite a few people in the room, surgeons, midwifes the lot as they will need to act quite fast once baby was born to reduce the risk of infection and to get the ball going in order of operations.
Throughout my pregnancy I had many scans, too many I cant even remember and at one point baby was borderline small. But since Scott and I are both very tall, he quickly caught up and became above average which they said was amazing. The reason for all the scans and tests were to check on how dilated the bowel was as it very common for it to swell which can cause complications with birth and can prolong the recovery time as its harder for a swollen bowel to fit back inside a tiny tummy. Luckily for us, our baby only had 1 loop that was swollen which was amazing news for us as we were looking at a more positive recovery time. There are many baby's who are born with this condition and have severe swollen bowels and have been in hospital for months. So for us we felt very blessed for us to be on the lower end of the scale! I was told that I was only allowed to go until around 38 weeks pregnant as in the last 2 weeks is when babies usually put on all the fat and weight and this can cause more complications in labour with the bowel being on the outside. From around 34 weeks pregnant I had to go twice a week to have his heart rate monitored to check that he was doing well and wasn't under any stress. But 50% of babies with this condition can be bored before 38 weeks pregnant on their own... this was scary as once they told me I was 32 weeks and they said that baby can come anytime from now!
 |
| Last baby bump pic and the day I went into hospital. |
All was fine until I reached 36weeks +5 days pregnant and the movements started to slow down and I realised in the afternoon that I hadn't really felt baby move at all that day. This had happened before and I did the usual routine of drinking something really cold, eating, having a lie down, bath etc.. and then I felt movements. But this time was different... nothing was happening! I went into hospital around 8pm that evening and went on the monitor to find that his heart rate was steady a little lower than expected but consistent he just decided to be a little lazy! I had high blood pressure so they decided to keep me in over night to monitor me and see how I was doing. Once all those evening tests had been done and the decision was made it was around 2.30am and I was finally taken to the ward to sleep but told they would be round at 6am to start the tests again for the day - didn't give me much time to sleep. Obviously pregnancy doesn't allow you to have the best sleep and my restless legs kicked in that morning so in total I got around 1.5 hours sleep before I was woken up to have my blood pressure and put back on the monitor to check the heart rate of bubs.
I was told not to eat as just in case they decided to induce me that day it would be by C-section. Obviously a pregnant lady can get very hungry so I ate a few odd bits throughout the day as I wasn't convinced I would be going into labour that day and I didn't want to have a C-section, not because of any reason other than the thought of being cut open makes me a little queasy. Time was going so slowly and none of our family knew that we were in the hospital as we weren't entirely sure what was going on so we didn't want to worry anyone until we knew exactly what was happening.
Around 5pm they told us they were going to do one last test as he was doing okay, but one last test to confirm everything was fine and if it was we were allowed to go home and the continue the weekly checks and to come back for induction at 38 weeks. It got to 6.20pm and all of a sudden my waters broke, contractions came out of no where and were soo strong 2 minutes apart. The decision was made by our baby that he wanted to come and see us, he had enough on being monitored!
Calling the midwifes in and saying to them that no need to test anymore its happening, all systems were ago! My labour was so quick even though it felt like a lifetime (hats off to those with long labours) every time I said I needed to push I had lots of surgeons running in the room which upset me as all of a sudden their was around 12 people in this tiny room and apart from me, Scott & the midwifes, everyone just seemed to be so casual. I knew there was going to be a lot of people but in the moment with all the emotions, everything just got to me. The only person I could really focus on was the student midwife, who I had met before and I was so happy to have her there as well as Scott and I just almost felt that I was definitely in safe hands.
Once he was born at 10.05pm, he was wrapped in cling film to keep the warmth in and wrapped in lots of towels, quick 2 minute cuddle and then whipped away to go straight down into the Neo Natal Unit. a couple hours had past and once I had been stitched, bathed and fed and he was ready, we headed down to properly meet our baby for the first time!
It was incredible, he was so perfect.
At around 2 weeks he was allowed to have food, I had been expressing as I had wanted to try breastfeeding. I couldn't breast feed with him but expressing was working. We were told that babies with his condition typically do not take to breast milk as it is very rich in protein and their tummy's struggle to handle it. We were also told that he wouldn't take to Formula and would probably have to go on prescription milk but we were allowed to give all a try. Our little chunk loved breast milk he took it amazingly! We had to teach him how to eat and he was only allowed small amounts to start building up to a full bottle.
Altogether he was in hospital for 3 weeks, which is around the minimum time that they are typically in hospital for. Sadly many babies with this condition are in for a lot longer due to many reasons, the bowel not going back inside properly, eating and many other reasons. We were very lucky and definitely felt very blessed and couldn't wait to get our baby home to start life as a family together.
Jacob took breastmilk, Formula and even hungry baby milk to then have to start feeding him at just 3 months old under the guidance of his consultants at the hospital which he still has to visit now just to check how he is doing. He has reached every goal post they has said might not happen and he is such a funny little character and you would never know he ever went through all of this at birth. He does still have a hernia now, but that is due to be sorted between the ages of 4/5 and hopefully they will be able to make him a bit of a belly button as he just has a hernia where a belly button should be.
I am very proud of everything we have been through and Jacob will always be so special to us, along with the birth of our new baby Thomas, Both very different experiences within the pregnancy and labour but that's what makes them both so special and although Jacob still has another operation to come he has done so well and is growing so fast!
Has anyone else either had this condition or had a baby with this condition or any other conditions that you would like to share?
I cannot thank and be so grateful for the NHS, they took such good care of our little boy, and gave us all the information and care that we needed and for that we will be forever thankful for every single person who we came across in the care of Jacob they were all so amazing!
** I decided not to share the intimate photos of the procedure as I feel that it isn't something I want to put out for everyone to see, it is something that we want to show Jacob when he is older and its for him to decided if he wants to share these photos.**
Comments
Post a Comment