So, this week, had a scare. It started out as a typical Friday, and I am home with the boys. Suddenly Trent started to vomit his feeds back up. At first, it was his breakfast milk that my mother in law fed him while I took Trevor to day care. Then when I fed him his breakfast rice cereal, that came back up about 30 minutes later. All of it. It erupted like a volcano; but it came up as if it was still quite fresh from just eating it. I tried one more time with just a small feed of milk and that came up. His poop was also very runny, like diarrhea instead of the pasty texture. So I started to worry, and calls Trent Pediatrician. I was by myself today, my parents just stepped out and so, I was left with the option of taking both boys with me by myself to see the doc. On the positive side, Trent did not have a fever, he was not overly fussy nor did he lose his appetite. Actually he was hungry and wanted his feed but not know what's causing the vomiting, I limited his feed.
So at the doctor's office, he checked Trent out, he said, he's responsive, he's not fussy, and listened to his internals and perform some checks on his abdomen area said he didn't feel any obstruction (or obvious blockages). And so this leads to either a typical stomach bug or something worse. For the time being, it will be a wait and see. We'll give him pedialyte and see how he responds to that and slowly re-introduce his feeds starting with breast milk. If his symptoms gets worse, the doc said we'll have to admit him in for IV's and hydration.
So, that first night was extra tough, Trent was extremely fussy, not because of the vomiting, but because he was hungry. He see's the bottle reaches for it. He instantly calms down when we stick the bottle in his mouth. But each feed, we would only give him 1oz (30ml) to feed as we learned, that is the amount he can hold down. Earlier trial and error feeds resulted in him vomiting his milk back up (60ml's). He wake at 1am, then at 3am, and 5 am. Finally in the morning, around 6:30 we gave him a bigger 2oz feed and he was happy and felt the full-ness satisfaction and finally took a nice nap; he did have a small vomit, although it was less traumatic and was more like a big spit-up instead. The rest of the mornings, we give him his feeds at 1.5 hour intervals to keep him satisfied. We also put in a rice cereal feed to see how he responded to that and how his poop is as his doctor was going to call in and check on his progress. Fortunately, he poop was not as runny but milky and he was holding down his feeds. We would hold him for about 30-40 minutes at a time to ensure he's upright and not agitated that would cause him to vomit. Boy we were tired.
His doc calls and was pleased to hear how he's doing and advised us to continue our current path; smaller feeds at quicker duration. As the day goes by, Trent seems to be getting better. We gave him some baby puree feeds (peas and spinach)l nice and green. He ate it with great pleasure and held it down. A few hours later, his poop came out nice and "mushy", we were super happy. Its a sign that he's getting better and that it may have been a stomach bug.
Here is the TWIST just as Trent was ramping his feed up, Troy all of a sudden threw up his entire lunch feed. Then it struck us, putting one and two together; we have recently switch Trent from breast milk into formula in hopes of getting him more calories. And the breast milk was then given to his twin brother Troy. Since Daisy cannot cold turkey stop pumping milk, it was to be a gradual slow down. Well, with the vomiting, we decided to switch it back, and give Trent the Breast milk and give Troy the formula, or give Troy the remaining unfinished formula from the bottle that Trent has not yet finished. We were using ready feed. And barely a day of Troy taking Trent's formula, he too vomited and this triggered a theory. That it must be a bad bottle of milk.
Although not fully confirmed, we felt confident it was the milk.
Trent is now better, he is able to take his feeds and no more vomiting. His solid feeds hasn't been back to his norm yet, but we're confident it'll get back to where he left off.
Monday, March 18, 2013
Thursday, March 7, 2013
first 10 months; part 1 - OEIS
Purpose
We're creating this blog to document our son Trent's (who is also a twin) journey and his road to recovery with O.E.I.S. complex (omphalocele-exstrophy-imperforate anus-spinal defects). We never thought of creating a blog until recently when I learned of the actual terminology of his diagnosis. We were aware of the medical conditions he had, but was not aware of the full terminology O.E.I.S. until recently. And so decided to do a little reading on it and became inspired by some of the other parents/family that also have a child experiencing this condition. I also want to document what we've experience for other parents and also for our future to look back at what we've gone through with Trent and his road to recovery.
So this first blog will include a quick intro and history to the best of my memory, since the blog is being written 10 month after our son's arrival and after the many activities that has already occurred in the past months and to then capture the activities from here on.
O.E.I.S. complex is a condition that occurs in 1 in 200,000 to 400,000 births. So it is very rare. It is a condition where a baby is born with several abnormalities, and in this case, omphalocele (intestines outside of the abdomen), Exstrophy (bladder is outside of the abdomen), Imperforate Anus (the intestine is not connected to the anus) and spinal defects (i.e. Spinal bifida).
It was not until around week 13, through ultra-sounds that the doctors noticed something that was not of the norm as they noticed twin "A" (Trent) had a bulge at the abdominal area. Since it was still early, they could not fully diagnose this and advised us that it may be a delayed closure of the abdomen area and so we would just have to wait. It was also during this week, where it was confirmed that the twins are mono-di twins, in other words "Identical Twins". Since it was still so early, gender could not be confirmed.
As we learned, Identical twins are random and not hereditary unlike fraternal twins where it could be genetic. A few weeks has gone by and by week 18, we would go in for the routine ultra-sound with the intent to identify the gender of the babies. They confirmed the twins were boys, but that joy was short lived as the doctors would then notice that there is something not of the norm with Twin "A" (Trent). It started out with the technician giving out a "hmmm" sound as they could not confirm the gender of Twin A, but since they were mono-di twins, and twin B is confirmed as a boy, it was automatic that they're boys. The reason why they could not confirm the gender was because they noticed something with twin A. We've been to many ultra-sounds and this was expected to be no different the the others until, one of the technician didn't say anything and asked for a doctor to take a closer look and it is then they noticed and would diagnose Twin A as having a condition called omphalocele. Omphalocele is a condition where the baby's intestine are outside of the abdomen. Our mood suddenly sank. CPMC also had recently merged with Stanford Lucile Packard Children's Hospital and so we were linked with the best pediatric medical physicians. With the diagnosis of omphalocele, we met with the pediatric surgeon (she is a GREAT doctor; more on that later) who specializes in these cases and she advised us on the treatments (surgery) which could only occur after birth and that the success rate is fairly high; so this brought in some relief to us, that Twin A would be ok. Later, in other scans, it was also noticed that Trent had a foot issue, what kind, we did not know and it would not able to be determined until after birth. With these symptoms, we were advised by the doctors and went with additional testing (amniocentesis) to check for any genetic disorders (i.e. trisomy 13 etc). Since these are identical twins, if one had genetics issues, likely both would. Also, two test would need to be performed one on each twin. We were devastated but was hopeful and prayed to God for support.
Doctors were advising us of multiple options we have but we did not want to think about it or make any decisions until the amnio results came in. We scheduled the amnio test and I can see my wife wince as they have to poke her twice to draw the fluid (one for each baby). From the ultra sound, Twin B was easily done, but Twin A was a feisty little guy, and was moving his hand and almost touched the needle, eventually the fluid draw was complete. We even had a second, higher intensity examination test done as well to take a look at other genetics that the standard amnio test does not look for. The wait was agonizing for the next few days; but that ever important phone call came and we were told of great news, both boys had normal genetics. We were ever so relieved; all the thoughts of the what-ifs, woulda-coulda's were wiped away and we can focus on primarily the physical defect of the omphalocele on Twin "A". It is here where we decided Twin "A" will be Trent and Twin "B" is Troy
So the waiting game begins.
It was a nice sunny Easter weekend. On Easter Sunday, April 8th, Daisy decided to stay home and rest while I went out with my parents to go on the family's annual pay our respect to my grandparents and other ancestors (typical for Asian cultures around this time of the year). All of a sudden, I get the call and immediately rushed home and took Daisy to the hospital. It was only 34 weeks and so the doctors attempted to slow down the contractions in hopes of delaying labor, but Trent was not having it and the doctors took us in and readied us for c-section delivery. There double the amount of nurses and doctors, two teams, one for each baby. I was taken in to accompany Daisy. The surgeon gave us the signal (in 5 minutes), and I just kept the conversation going and it helped Daisy stay relaxed and calm. Then at 6:01pm, Easter Sunday, April 8th, 2012, Trent was the first to be born, he was taken to the table where his team of doctors and nurses cleaned him up, following shortly at 6:02pm, Troy was born and he was also taken to his table to be cleaned and checked up. We can hear both boys wince out a cry. We got to hold Troy shortly after for a few minutes, and Trent required some extra care and had to be kept in the incubator so didn't get to see him until later that evening. Trent weighed in at 3lbs 4oz and Troy weighed in at 4lbs 15oz.
We got to see both boys that evening after Daisy recovered from the c-section. We also got to see the Neonatologist on duty that evening and he advised us that they're evaluating Trent, but initial response was that Trent appeared to have more then just omphalocele and we'll have to wait for further evaluation by other doctors to advise us of the condition. With it being Sunday, we won't know till the next morning, Monday. Shortly the next day, we met with both the general Pediatric surgeon and a Urologist and that is when we learned that Trent had other physical abnormalities, in addition to his omphalocele, Trent also had a condition called bladder exstrophy, where his bladder was born outside of abdomen and was split into two halves (this would require immediate surgery), he also had an imperforated anus (where his colon is too short) and does not reach his anus and epispadias (typically related to the bladder exstrophy) where his penis is splayed and did not fully close. We also learned that Trent's right foot is not a club foot, but of something else that was not immediately known by the attending doctors. We later learned it is a condition called "Ectrodactyly" (also known as lobster foot). The orthopedic surgeon that examined Trent said that, that should not impede on Trent's mobility later in the future. What's unique on Trent is that it is only on one foot; and per this condition, is usually on both feet or both hands. So this was a relief in that we know Trent would be able to walk.
So the doctors went over Trent's details and work out a plan and it was also decided by the team of surgeons that they would operate on Trent the day after (Wednesday April 11th) and the procedure would include putting his intestines back in his abdomen, putting in a ostomy and most importantly, addressing his bladder. It was going to be a big and long surgery. We got to meet all the surgeons, anesthesiologist, nurses that will be operating on Trent. But for the time being, we took the time and got to enjoy Trent and Troy that Tuesday.
So come Wednesday morning, we met the anesthesiologist, the urologist, the general pediatric surgeon, and several of the O.R. nurses; each having their own specific task. Dr. Kennedy, Trent's urologist will be responsible in repairing Trent's bladder, Dr. Mueller, Trent's general surgeon will be responsible in addressing the omphalocele and putting in a ostomy. I was able to personally wheel Trent into the O.R. hand him over to the surgical team and the wait began. The surgery started roughly at about 10am, and it was about 5pm when we get the call from the NICU that Trent is out of surgery and doing very well. We're told that he was such a trooper, he did very well, there was minimal blood loss and he did not even need a transfusion. He was sedated and had paralytic medication to immobilize him for the next few days until his body heals; and boy, did he have a lot of lines/tubes (about 12) stuck in him and a ventilator to regulate his breathing. There were three rack holding the regulating pumps administering the medications/feeds/IV and each rack were maxed out.
We met the surgical team and they gave us the thumbs up and said he'll be monitored for the next few days to see how he's handing the recovery. From the surgery, we learned that he received a ileostomy (rather then a colostomy). It is because he has very little colon, and so the ostomy was hooked up to his small intestine. We also learned that Trent had enough room in his abdomen after putting his intestine back in that they were also able to put his bladder back in his abdomen. This was a HUGE deal as it would facilitate better healing (and I think less prone to infection if it were external). In addition to the bladder and intestine, the surgeons also had to re-align his hip due; as it was common with babies being born with this conditions, their hips are not properly lined. So when he came out of surgery, he was also in a partial lower body wrap to keep everything in line.
Having gone through a surgery of this magnitude, Trent was assigned a dedicated nurse to care for him for the next few days. And it would be for the next five weeks that Trent would be recovering in the NICU.
With Daisy having had a C-Section, we were allowed to stay in the hospital a extra day or so compared to a non c-section birth and so allowed us to be close to the boys. It allowed us to visit Trent when ever we wanted to before we would pack to go home. Since both boys were pre-mature, and obviously for Trent, they would not be going home with us yet. For Troy, he will have to demonstrate he is able to eat on his own and gain some weight, and obviously for Trent, it will be a while before he can come home. So, when Daisy was discharged to go home, we took advantage of the time to prepare the house, clean up and familiarize ourselves with all the medical supplies and also training to care for Trent.
After a few days, Trent was slowly being weened off of the paralytic medication and he would slowly wake and every once in a while, open his little eyes to take a peak. He was still immobile but was awake and alert. His surgeons came to check on him and are please with how things were going. After stool had come into his ostomy bag, he was allowed to start taking in some breast milk. Initially it was a very small amount, but eventually he would be taking the bottle (maybe about 10 ml feed). During this time, we also learned to change his ostomy, change his dressing, give him his mini physical training/exercise (PT) for his legs and also watch each of the tubes slowly get removed.
There was even a time that Trent had recovered well enough, that the doctors allowed his brother Troy to hang out and take a nap in the same incubator together.
About two weeks later, Troy was doing well that he gets to come home, so, on April 18th, we took Troy home. He passed his car seat test and was given the green light. His big brother Trevor was excited to meet his little brother.
It was actually an advantage of just bringing Troy home first. It allowed us to re-adjust with just one new baby and also to slowly get Trevor acquainted with his new little brother. And allowed us to also focus on getting Troy adjusted to his new home and getting into a routine.
So for the next 5 weeks the NICU was home, Trent is to stay for the duration of the recovery, to grow, gain some weight and learn to feed. His goal was to be able to maintain his own temperature in an open crib and to also be able to feed off of the bottle and take down at least 45 ml from the bottle at each feed. After the first week or two (as I recall) of him being fed through the tubes, he began feeding via the bottle, initially the feeds were small and slow. Trent is a slow eater. But after some practicing and the skills of the NICU nurses, Trent made his feeds. Daisy would be at home pumping his milk supplies and watch Troy (and his brother Trevor) and I would come to the hospital each day to see Trent, bring in his milk supplies, assist with the dressing changes, feed him and spend a little time with him until he is well enough to come home for the duration of his stay.
The week prior to Trent coming home, we met with all his doctors to go over all the details of Trent and his recent accomplishments, to go over his plans for the foreseeable future and what is up ahead for Trent (i.e. future check-ups, up coming surgeries etc) and the pre-requisites that Trent must meet to be able to come home. It is very rare to be able to gather all the primary surgeons, pediatricians and other staff into a single meeting but we were lucky and that happened. Trent's general pediatric surgeon, his urologist, his pediatrician, his primary care nurses, the neonatologist, and the social worker were all there the week before the proposed discharge date when Trent would come home. We also had to purchase a car "BED"; yes that's right a Car bed, I've never heard of one before until that day. Since Trent had surgeries in his abdomen area, he would not be ready to sit in the standard car seat for quite some time. At least until his hip wrappings are removed which he would need to be on for at least the next several weeks.
The date selected was "Mother's Day" Sunday May 13th for Trent to come home. What a perfect gift for Mother's day. Trent was meeting his feeding requirements, he was holding temperature, we are comfortable with the dressing changes, he was gaining weight and we got the car bed. The road to coming home has finally arrived and we were excited. The day we took Trent home was both exciting and overwhelming, but all worth it.
For the next few weeks and months to come, it'll be a learning experience, challenges, many doctor visits and long nights and little sleep, especially with two infants at home now.Nonetheless, we are all now home as a complete family, all five of us.
My next entry will cover the months that came after we took Trent home, his many doctor visits, ultra-sounds, MRI, surgeries and other milestones.
We're creating this blog to document our son Trent's (who is also a twin) journey and his road to recovery with O.E.I.S. complex (omphalocele-exstrophy-imperforate anus-spinal defects). We never thought of creating a blog until recently when I learned of the actual terminology of his diagnosis. We were aware of the medical conditions he had, but was not aware of the full terminology O.E.I.S. until recently. And so decided to do a little reading on it and became inspired by some of the other parents/family that also have a child experiencing this condition. I also want to document what we've experience for other parents and also for our future to look back at what we've gone through with Trent and his road to recovery.
So this first blog will include a quick intro and history to the best of my memory, since the blog is being written 10 month after our son's arrival and after the many activities that has already occurred in the past months and to then capture the activities from here on.
O.E.I.S. complex is a condition that occurs in 1 in 200,000 to 400,000 births. So it is very rare. It is a condition where a baby is born with several abnormalities, and in this case, omphalocele (intestines outside of the abdomen), Exstrophy (bladder is outside of the abdomen), Imperforate Anus (the intestine is not connected to the anus) and spinal defects (i.e. Spinal bifida).
Introduction and Background
My name is Waiman and my wife is Daisy. We already have a toddler (now pre-schooler) son, Trevor who is now three years old. After Trevor, we wanted Trevor to have a sibling and not long before we knew it, we found ourselves expecting. Like many expecting parents, with the over the counter pregnancy test, we were filled with joy on the news of expecting a new baby, but it was not until the very first visit with the doctors to confirm the pregnancy that we also found out through ultra sounds, another surprise, we were actually expecting TWINS. This was overwhelming; and it took us a little time to even digest the news; so many thoughts are going through our minds (how are we going to handle two babies and a toddler, we'll need more equipment etc). A few weeks later, we learned that the babies are mono-di twin (Identical twin). So the journey begins with routine check-ups and visits with the doctors. Daisy has had gestational diabetes with Trevor and thus the likelihood of this pregnancy she'd also would have gestational diabetes is high and that was the case. This required routine and regular ultra-sounds and multiple check-ups. We would have our routine weekly visits at CPMC (California Pacific Medical Center) also known as San Francisco Children's hospital.
And the journey Begins
It was not until around week 13, through ultra-sounds that the doctors noticed something that was not of the norm as they noticed twin "A" (Trent) had a bulge at the abdominal area. Since it was still early, they could not fully diagnose this and advised us that it may be a delayed closure of the abdomen area and so we would just have to wait. It was also during this week, where it was confirmed that the twins are mono-di twins, in other words "Identical Twins". Since it was still so early, gender could not be confirmed.
As we learned, Identical twins are random and not hereditary unlike fraternal twins where it could be genetic. A few weeks has gone by and by week 18, we would go in for the routine ultra-sound with the intent to identify the gender of the babies. They confirmed the twins were boys, but that joy was short lived as the doctors would then notice that there is something not of the norm with Twin "A" (Trent). It started out with the technician giving out a "hmmm" sound as they could not confirm the gender of Twin A, but since they were mono-di twins, and twin B is confirmed as a boy, it was automatic that they're boys. The reason why they could not confirm the gender was because they noticed something with twin A. We've been to many ultra-sounds and this was expected to be no different the the others until, one of the technician didn't say anything and asked for a doctor to take a closer look and it is then they noticed and would diagnose Twin A as having a condition called omphalocele. Omphalocele is a condition where the baby's intestine are outside of the abdomen. Our mood suddenly sank. CPMC also had recently merged with Stanford Lucile Packard Children's Hospital and so we were linked with the best pediatric medical physicians. With the diagnosis of omphalocele, we met with the pediatric surgeon (she is a GREAT doctor; more on that later) who specializes in these cases and she advised us on the treatments (surgery) which could only occur after birth and that the success rate is fairly high; so this brought in some relief to us, that Twin A would be ok. Later, in other scans, it was also noticed that Trent had a foot issue, what kind, we did not know and it would not able to be determined until after birth. With these symptoms, we were advised by the doctors and went with additional testing (amniocentesis) to check for any genetic disorders (i.e. trisomy 13 etc). Since these are identical twins, if one had genetics issues, likely both would. Also, two test would need to be performed one on each twin. We were devastated but was hopeful and prayed to God for support.
Doctors were advising us of multiple options we have but we did not want to think about it or make any decisions until the amnio results came in. We scheduled the amnio test and I can see my wife wince as they have to poke her twice to draw the fluid (one for each baby). From the ultra sound, Twin B was easily done, but Twin A was a feisty little guy, and was moving his hand and almost touched the needle, eventually the fluid draw was complete. We even had a second, higher intensity examination test done as well to take a look at other genetics that the standard amnio test does not look for. The wait was agonizing for the next few days; but that ever important phone call came and we were told of great news, both boys had normal genetics. We were ever so relieved; all the thoughts of the what-ifs, woulda-coulda's were wiped away and we can focus on primarily the physical defect of the omphalocele on Twin "A". It is here where we decided Twin "A" will be Trent and Twin "B" is Troy
So the waiting game begins.
Its time, the arrival of the twins
It was a nice sunny Easter weekend. On Easter Sunday, April 8th, Daisy decided to stay home and rest while I went out with my parents to go on the family's annual pay our respect to my grandparents and other ancestors (typical for Asian cultures around this time of the year). All of a sudden, I get the call and immediately rushed home and took Daisy to the hospital. It was only 34 weeks and so the doctors attempted to slow down the contractions in hopes of delaying labor, but Trent was not having it and the doctors took us in and readied us for c-section delivery. There double the amount of nurses and doctors, two teams, one for each baby. I was taken in to accompany Daisy. The surgeon gave us the signal (in 5 minutes), and I just kept the conversation going and it helped Daisy stay relaxed and calm. Then at 6:01pm, Easter Sunday, April 8th, 2012, Trent was the first to be born, he was taken to the table where his team of doctors and nurses cleaned him up, following shortly at 6:02pm, Troy was born and he was also taken to his table to be cleaned and checked up. We can hear both boys wince out a cry. We got to hold Troy shortly after for a few minutes, and Trent required some extra care and had to be kept in the incubator so didn't get to see him until later that evening. Trent weighed in at 3lbs 4oz and Troy weighed in at 4lbs 15oz.
We got to see both boys that evening after Daisy recovered from the c-section. We also got to see the Neonatologist on duty that evening and he advised us that they're evaluating Trent, but initial response was that Trent appeared to have more then just omphalocele and we'll have to wait for further evaluation by other doctors to advise us of the condition. With it being Sunday, we won't know till the next morning, Monday. Shortly the next day, we met with both the general Pediatric surgeon and a Urologist and that is when we learned that Trent had other physical abnormalities, in addition to his omphalocele, Trent also had a condition called bladder exstrophy, where his bladder was born outside of abdomen and was split into two halves (this would require immediate surgery), he also had an imperforated anus (where his colon is too short) and does not reach his anus and epispadias (typically related to the bladder exstrophy) where his penis is splayed and did not fully close. We also learned that Trent's right foot is not a club foot, but of something else that was not immediately known by the attending doctors. We later learned it is a condition called "Ectrodactyly" (also known as lobster foot). The orthopedic surgeon that examined Trent said that, that should not impede on Trent's mobility later in the future. What's unique on Trent is that it is only on one foot; and per this condition, is usually on both feet or both hands. So this was a relief in that we know Trent would be able to walk.
So the doctors went over Trent's details and work out a plan and it was also decided by the team of surgeons that they would operate on Trent the day after (Wednesday April 11th) and the procedure would include putting his intestines back in his abdomen, putting in a ostomy and most importantly, addressing his bladder. It was going to be a big and long surgery. We got to meet all the surgeons, anesthesiologist, nurses that will be operating on Trent. But for the time being, we took the time and got to enjoy Trent and Troy that Tuesday.
The "BIG" Surgery
We met the surgical team and they gave us the thumbs up and said he'll be monitored for the next few days to see how he's handing the recovery. From the surgery, we learned that he received a ileostomy (rather then a colostomy). It is because he has very little colon, and so the ostomy was hooked up to his small intestine. We also learned that Trent had enough room in his abdomen after putting his intestine back in that they were also able to put his bladder back in his abdomen. This was a HUGE deal as it would facilitate better healing (and I think less prone to infection if it were external). In addition to the bladder and intestine, the surgeons also had to re-align his hip due; as it was common with babies being born with this conditions, their hips are not properly lined. So when he came out of surgery, he was also in a partial lower body wrap to keep everything in line.
Having gone through a surgery of this magnitude, Trent was assigned a dedicated nurse to care for him for the next few days. And it would be for the next five weeks that Trent would be recovering in the NICU.
Recovery
After a few days, Trent was slowly being weened off of the paralytic medication and he would slowly wake and every once in a while, open his little eyes to take a peak. He was still immobile but was awake and alert. His surgeons came to check on him and are please with how things were going. After stool had come into his ostomy bag, he was allowed to start taking in some breast milk. Initially it was a very small amount, but eventually he would be taking the bottle (maybe about 10 ml feed). During this time, we also learned to change his ostomy, change his dressing, give him his mini physical training/exercise (PT) for his legs and also watch each of the tubes slowly get removed.
There was even a time that Trent had recovered well enough, that the doctors allowed his brother Troy to hang out and take a nap in the same incubator together.
Troy gets to come home
It was actually an advantage of just bringing Troy home first. It allowed us to re-adjust with just one new baby and also to slowly get Trevor acquainted with his new little brother. And allowed us to also focus on getting Troy adjusted to his new home and getting into a routine.
Trent's journey to coming home
The week prior to Trent coming home, we met with all his doctors to go over all the details of Trent and his recent accomplishments, to go over his plans for the foreseeable future and what is up ahead for Trent (i.e. future check-ups, up coming surgeries etc) and the pre-requisites that Trent must meet to be able to come home. It is very rare to be able to gather all the primary surgeons, pediatricians and other staff into a single meeting but we were lucky and that happened. Trent's general pediatric surgeon, his urologist, his pediatrician, his primary care nurses, the neonatologist, and the social worker were all there the week before the proposed discharge date when Trent would come home. We also had to purchase a car "BED"; yes that's right a Car bed, I've never heard of one before until that day. Since Trent had surgeries in his abdomen area, he would not be ready to sit in the standard car seat for quite some time. At least until his hip wrappings are removed which he would need to be on for at least the next several weeks.
The date selected was "Mother's Day" Sunday May 13th for Trent to come home. What a perfect gift for Mother's day. Trent was meeting his feeding requirements, he was holding temperature, we are comfortable with the dressing changes, he was gaining weight and we got the car bed. The road to coming home has finally arrived and we were excited. The day we took Trent home was both exciting and overwhelming, but all worth it.
For the next few weeks and months to come, it'll be a learning experience, challenges, many doctor visits and long nights and little sleep, especially with two infants at home now.Nonetheless, we are all now home as a complete family, all five of us.
My next entry will cover the months that came after we took Trent home, his many doctor visits, ultra-sounds, MRI, surgeries and other milestones.
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