I mentioned before that Maddox's urine output is not looking good and he's not putting out like he should. Three doses of a diuretic was administered over the course of a 12 hour period but that proved unsuccessful. His tissues were retaining water which is not uncommon following surgery; two surgeries in his case. As you could imagine that was very concerning to all involved. His stomach was swollen and the fluid began to push up against his diaphragm which had an adverse affect on his small lungs. The surgeons held surgery as a last resort. This was communicated to us by Dr. Vu, one of the surgeons on Dr O's team about 6:30 pm. After our discussion, Dr O came by to take a look at Maddox along with Dr. Vu and was concerned that the pressure in his stomach may have began to affect his kidneys to the point of them not operating correctly. He felt strongly that surgery be done to correct this issue. Little did we know how soon this surgery would need to be done. Without the surgery, Maddox would only get sicker and sicker. Dr. Vu called us around 7:30 pm and said surgery would need to be done right away. Man, this broke my heart to pieces. I was like this can't be happening. My son cannot have a 3rd surgery. This is just too much trauma for him. I was soooo AFRAID!!! ;( Dr Vu explained that due to the swelling of the skin and the fluid retention in the tissue it may be impossible to patch the skin back together after the surgery. So if this was the case then they would have to use a surgical plastic to patch the area which would leave his stomach open for a couple of days. All of this just threw me into a shock and I couldn't stop crying until after the surgery was done. Both of our hearts was tremendously heavy as ever before. Our precious son doesn't deserve all of this.
Dr. O had to jump on a plane to attend a conference in San Antonio. The surgery was performed by Dr. Cass (associate of Dr. O) He is amazing as well. The surgery started at 9:30 pm and ended at 11:00 pm. Dr Cass called us and told us that he found a big clot that formed. So he cleaned everything out and the surgery went well. And he was able to close the area with his own skin. When we got that news I felt like soooo relieved and I knew that all the prayers that went out in behalf of Maddox was answered!!! Thank you Jehovah I yelled! I made sure to text as many friends and family as I could to make sure prayers were made asap for Maddox before his surgery would take place. We immediately rushed back to the NICU and saw Maddox and he looked alot better. His stomach area was decompressed. Yesterday was one rough day/night I tell ya! But we made it through with Jehovah's help. Please continue to pray for Maddox recovery. He's one tough sweetheart!
Jenny Torry
Friday, April 1, 2011
Thursday, March 31, 2011
Maddox is a week old!! March 30, 2011
Maddox is officially a week old today!! Recently he hasn't been doing too well. He hasn't been able to urinate since the surgery on Monday. They increased the volume and did several other methods to see if he would urinate on his own but he wouldn't. So the last resort was to put a catheter on him. (POOR GUY!!!) Since then his urine has been flowing out but not as much as they would like. He also had a picc line placed in his artery in the groin area that would reach near his heart area yesterday as well.That's pretty much a permanent line for now so they can draw blood and give him medication and so forth. This way they don't keep poking for a new vein. With undergoing the two surgeries and all the poking has really exhausted him tremendously. You could see how tired and worn down he was yesterday. He looks a lot better in the face today than yesterday. Another issue we have been facing recently is that he has been bleeding in his stomach area. He looks bloated in that area. So the doctor's decided this morning to lessen the blood thinner and try to see if that would help. It's a fine line on being balance with blood thinner due to being on ECMO. Because if you lessen the blood thinner it can form blood clots. And we all know what that can cause. So far he has stopped bleeding so that was a HUGE relief. That was very scary to face that today. But glad that he's stable and recovering from that. The doctors and the nurses here all are very caring and definitely shows much concern with Maddox care. We're truly grateful for all of their hard work in caring for Maddox around the clock.
Just got back from visiting with him and he looks a lot better. What's amazing is that he opened his eyes for the most extended time that practically blew me away!!!! It was breathtaking to see how beautiful his eyes are. As I was talking to him he looked at me and when his dad would talk to him he shifted his eyes toward him. That just melted my heart. Amazing how your child recognizes the parent voices. We love him sooo much!! We love reading to him. Below are some pictures.
Ever since Monday, we've been going non stop. I've been walking a lot and standing for a period of times next to my son's bedside. I literally pay for it toward the end of the day. The pain is unbearable a lot of times when I'm walking or laying down. It's been 7 days since my delivery and the swelling in my ankle and knocking pain of my incision keeps lingering. I know I have to rest, but it's hard to rest like I should. Tawa has been a HUGE support with everything. I've got the most wonderful husband and is the best father to his son!! :)
We've been staying at Ronald Mcdonald House since Sunday night. It's located on the same floor as the NICU here at Texas Children's Hospital. Although both the Ronald Mcdonald House and the NICU are on the same floor it's quite a distance from the entrance of the NICU. It's a huge place here. The Ronald Mcdonald Housing is a wonderful privilege because it allows the opportunity for parents of a child that is in the NICU to stay at the Hospital. This affords the opportunity for parents to be close to their child as much as possible. The way it works is that it's a first come first serve basis. There's only 19 rooms. It's not a guaranteed that you will get a room. So you check in at 7 in the evening and check out in the morning by 11. Every morning Tawa takes our luggage and belongings to the car and bring it back in when we check in. It cost us $12.00 a day to park here in the garage. Parking here will eat you alive since it adds up. So that's pretty much our schedule here. We have been staying here at the hospital around the clock. The brothers from the HLC here in Houston came and visited us on Monday. The loving brothers and sisters here in Houston are amazing. The brothers have arranged three congregations to provide hot meals for us throughout the week.They announced to the three congregation about us. How loving Jehovah's organization is!!!! Jehovah always provides that's for sure. To experience such support and love is truly encouraging and heartwarming. The fact that the friends here don't really know us well since we have only been down here for 3 weeks, but are connected by faith and love is truly remarkable!!! Definitely brings smiles to our faces.
Jenny Torry
Just got back from visiting with him and he looks a lot better. What's amazing is that he opened his eyes for the most extended time that practically blew me away!!!! It was breathtaking to see how beautiful his eyes are. As I was talking to him he looked at me and when his dad would talk to him he shifted his eyes toward him. That just melted my heart. Amazing how your child recognizes the parent voices. We love him sooo much!! We love reading to him. Below are some pictures.
Ever since Monday, we've been going non stop. I've been walking a lot and standing for a period of times next to my son's bedside. I literally pay for it toward the end of the day. The pain is unbearable a lot of times when I'm walking or laying down. It's been 7 days since my delivery and the swelling in my ankle and knocking pain of my incision keeps lingering. I know I have to rest, but it's hard to rest like I should. Tawa has been a HUGE support with everything. I've got the most wonderful husband and is the best father to his son!! :)
We've been staying at Ronald Mcdonald House since Sunday night. It's located on the same floor as the NICU here at Texas Children's Hospital. Although both the Ronald Mcdonald House and the NICU are on the same floor it's quite a distance from the entrance of the NICU. It's a huge place here. The Ronald Mcdonald Housing is a wonderful privilege because it allows the opportunity for parents of a child that is in the NICU to stay at the Hospital. This affords the opportunity for parents to be close to their child as much as possible. The way it works is that it's a first come first serve basis. There's only 19 rooms. It's not a guaranteed that you will get a room. So you check in at 7 in the evening and check out in the morning by 11. Every morning Tawa takes our luggage and belongings to the car and bring it back in when we check in. It cost us $12.00 a day to park here in the garage. Parking here will eat you alive since it adds up. So that's pretty much our schedule here. We have been staying here at the hospital around the clock. The brothers from the HLC here in Houston came and visited us on Monday. The loving brothers and sisters here in Houston are amazing. The brothers have arranged three congregations to provide hot meals for us throughout the week.They announced to the three congregation about us. How loving Jehovah's organization is!!!! Jehovah always provides that's for sure. To experience such support and love is truly encouraging and heartwarming. The fact that the friends here don't really know us well since we have only been down here for 3 weeks, but are connected by faith and love is truly remarkable!!! Definitely brings smiles to our faces.
Jenny Torry
Daddy reading to his precious son. :)
Maddox holding daddy's thumb.
Tuesday, March 29, 2011
Another Surgery??? - March 28, 2011
During his hernia repair surgery, the surgeons noticed that our son's anus did not form properly. As a result, he is not able to pass his stool. That being the case he had to undergo another surgery today-a colostomy. We were thinking 'are you SERIOUS???' Just when you are up, there is something to bring you down. This is par for the course though--a roller coaster indeed!! The surgeons didn't want to do this procedure the same day as his repair surgery because it would have been too much for the little guy. We are happy to say that this surgery went well. No unexpected complications. This is just a temporary fix. Once he gets over his main issue (CDH) they will repair and fix his plumbing. :) Poor guy, he's five days old and has undergone two surgeries; more than a lot of people have in their lifetime.
Maddox proved again that he's a strong fighter. So now that all the pressure has been relieved from his colon and stomach he's able to start recovering.
- Tawa & Jenny Torry
Maddox proved again that he's a strong fighter. So now that all the pressure has been relieved from his colon and stomach he's able to start recovering.
- Tawa & Jenny Torry
Maddox has his Diaphragmatic Hernia Repair Surgery - March 25, 2011
I'm recovering ok from my operation. My c-section incision is bigger than normal. They didn't want to struggle too much to take Maddox out. So I'm on pain medication to help manage my pain. Sometimes it helps sometimes it doesn't. I wish was able to stay in his room longer and stand and talk to him but my pain and the horrible gut feeling makes it diffcult for me to be with him all day. I know I need to heal and recover myself. So that's my struggle that I've been dealing with while I'm healing.
Maddox is now two days old. He's been a strong fighter! His color has changed and he looks a lot better. He's a BEAUTIFUL baby boy, I tell ya!!! You guys got to see him in person, pictures don't do justice. Tawa and I are sooo proud of our little man.
Dr Olutoye said since he's stable, they will go ahead and do the repair surgery today while he is on ECMO. We were surprised because a lot of CDH babies that I've heard, have to wait several days before they get their repair surgery done.
The repair surgery involves making an incision where the diaphram hernia is at. In Maddox case, he has a left diaphragmatic hernia. They had to make an incision on the left side of his chest and then moved all the stomach contents that had migrated to his chest cavity below the diaphragm. This included his liver, intestines, and spleen.
The surgery took place in his room that's in the NICU. We had to wait for the OR team to come to him and sterilize the room and prep Maddox for surgery. It was around 11:45 AM when the surgery began. We were waiting anxiously and praying that the surgery would go well. It was really nerve wrecking. Two and half hours later we got a call that the surgery was done and that we could go see Maddox. Dr Olutoye greeted us when we got there with a smile. He said Maddox did really well and that he didn't lose too much blood. His numbers went up and all that pressure to his heart was relieved. Being that his stomach contents were in his chest cavity there was little room for his heart. In fact, his heart had been pushed all the way to the right side of his chest. His heart will probably never move all the way back to the left side but that is fine. There is no need to mess with that. Dr Olutoye also confirmed that his left lung was small as we had expected. His right lung is all there. It was a HUGE relief to hear that he did well undergoing that surgery. Maddox proved to be a fighter once again. That was a huge hurdle that we knew that we had to face along this journey. He's not out of the woods yet though as he still needs to be supported by ECMO. This is a positive step in the right direction. Once he recovers from this surgery, they will work to ween him off ECMO.
Several friends and family came down and visited us from Dallas. There were a total of 19 and half ( the half was Maddox's 6 month old cousin Keilani) who all drove and flew down last minute from Dallas and San Antonio to come show their love and support for Maddox and us. Without out them we could not have made it through this extremely difficult time.
- Jenny Torry
Maddox is now two days old. He's been a strong fighter! His color has changed and he looks a lot better. He's a BEAUTIFUL baby boy, I tell ya!!! You guys got to see him in person, pictures don't do justice. Tawa and I are sooo proud of our little man.
Dr Olutoye said since he's stable, they will go ahead and do the repair surgery today while he is on ECMO. We were surprised because a lot of CDH babies that I've heard, have to wait several days before they get their repair surgery done.
The repair surgery involves making an incision where the diaphram hernia is at. In Maddox case, he has a left diaphragmatic hernia. They had to make an incision on the left side of his chest and then moved all the stomach contents that had migrated to his chest cavity below the diaphragm. This included his liver, intestines, and spleen.
The surgery took place in his room that's in the NICU. We had to wait for the OR team to come to him and sterilize the room and prep Maddox for surgery. It was around 11:45 AM when the surgery began. We were waiting anxiously and praying that the surgery would go well. It was really nerve wrecking. Two and half hours later we got a call that the surgery was done and that we could go see Maddox. Dr Olutoye greeted us when we got there with a smile. He said Maddox did really well and that he didn't lose too much blood. His numbers went up and all that pressure to his heart was relieved. Being that his stomach contents were in his chest cavity there was little room for his heart. In fact, his heart had been pushed all the way to the right side of his chest. His heart will probably never move all the way back to the left side but that is fine. There is no need to mess with that. Dr Olutoye also confirmed that his left lung was small as we had expected. His right lung is all there. It was a HUGE relief to hear that he did well undergoing that surgery. Maddox proved to be a fighter once again. That was a huge hurdle that we knew that we had to face along this journey. He's not out of the woods yet though as he still needs to be supported by ECMO. This is a positive step in the right direction. Once he recovers from this surgery, they will work to ween him off ECMO.
Several friends and family came down and visited us from Dallas. There were a total of 19 and half ( the half was Maddox's 6 month old cousin Keilani) who all drove and flew down last minute from Dallas and San Antonio to come show their love and support for Maddox and us. Without out them we could not have made it through this extremely difficult time.
Maddox- right after surgery
- Jenny Torry
Monday, March 28, 2011
Welcome Maddox on 3/23/2011
The next morning (23rd) Dr Raine (who was on duty that evening, Dr Ivey wasn't available) gave me my options to try being induce or go ahead with a c section. I was terrified when she said that they might have to do a c-section on me. Being cut was the last thing that I wanted. The doctor mentioned that Maddox wasn't tolerating the contractions well through the night. In the morning, I was dilated by 2 centimeters. I wanted to at least try to be induced first and try to have a natural delivery and if Maddox didn't tolerate that well we could go through with the c-section. So that was the plan for that morning. As it turned out, Maddox didn't tolerate the inducement medication. His heart rate would dip and it didn't look too good. So the doctor took me off the inducement medication and it was time to prep me up for the dreaded c-section. The staff there at St Luke's was AMAZING!!! Seriously the anesthesiologists, nurses, doctors were just awesome. I couldn't have asked for a better team to help with my delivery. I would probably come back here to deliver again. That's how impressed I was with the care.
I was awake during the operation. Of course I had epidural for the lower half of my body. Tawa was by my side. At 12:21 pm, my precious Maddox entered the world and his fight began. His weight was 5 lbs and 17.1 inches long. They quickly rushed him and put him in the hands of the neonatology team. Tawa quickly followed Maddox to the other room and was with him. Maddox was critically ill. He wasn't able to grasp oxygen at all. Maddox was really blue/purplelish color at birth. I'll post pictures soon. I didn't know all this until the following day. It was sooo sad and heart breaking because I wasn't able to see my son until the next day. I couldn't stop crying that day. :(
Maddox wasn't responding well with the ventilator. So the doctors didn't want to put too much pressure on his lungs and damage them. So within minutes, Maddox was rushed to the NICU and Dr Olutoye quickly ordered Maddox to be placed on ECMO. It's a lung and heart bypass machine. It's a very large machine and very complex. Thereafter, he was able to be stable being on the machine. The doctors were amazed on how well he responded from being on ECMO. Being on ECMO is not a cure, it just buys him time by allowing his heart and lungs to rest.
Now we have to wait to see when he's able to receive the surgery to repair his diaphragm surgery. We're taking it a day at a time. Please continue to PRAY for him during this difficult time. No parent should ever go through such traumatic experience with their beloved child. It's the hardest thing ever to see your son being hooked up to so many wires and having this condition. We knew that this would be the hardest journey when we found out about Maddox's condition in October. I know for a fact that with all of the prayers and Jehovah's help, Maddox is able to continue to fight for his life. Maddox is definitely our little strong warrior. We love hims so much!! He's hanging in there and his numbers are looking good so far.
- Jenny Torry
I was awake during the operation. Of course I had epidural for the lower half of my body. Tawa was by my side. At 12:21 pm, my precious Maddox entered the world and his fight began. His weight was 5 lbs and 17.1 inches long. They quickly rushed him and put him in the hands of the neonatology team. Tawa quickly followed Maddox to the other room and was with him. Maddox was critically ill. He wasn't able to grasp oxygen at all. Maddox was really blue/purplelish color at birth. I'll post pictures soon. I didn't know all this until the following day. It was sooo sad and heart breaking because I wasn't able to see my son until the next day. I couldn't stop crying that day. :(
Maddox wasn't responding well with the ventilator. So the doctors didn't want to put too much pressure on his lungs and damage them. So within minutes, Maddox was rushed to the NICU and Dr Olutoye quickly ordered Maddox to be placed on ECMO. It's a lung and heart bypass machine. It's a very large machine and very complex. Thereafter, he was able to be stable being on the machine. The doctors were amazed on how well he responded from being on ECMO. Being on ECMO is not a cure, it just buys him time by allowing his heart and lungs to rest.
Now we have to wait to see when he's able to receive the surgery to repair his diaphragm surgery. We're taking it a day at a time. Please continue to PRAY for him during this difficult time. No parent should ever go through such traumatic experience with their beloved child. It's the hardest thing ever to see your son being hooked up to so many wires and having this condition. We knew that this would be the hardest journey when we found out about Maddox's condition in October. I know for a fact that with all of the prayers and Jehovah's help, Maddox is able to continue to fight for his life. Maddox is definitely our little strong warrior. We love hims so much!! He's hanging in there and his numbers are looking good so far.
- Jenny Torry
Saturday, March 26, 2011
March 22, 2011 Update
I got off work early to go for my normal ob visit on Tuesday March 22nd. During my sonogram, the doctor found out that my amniotic fluid level was really low at 4 centimeter. Last week I was at 14 which was pretty normal. The low fluid level was affecting Maddox's movements and could cause more complication. So the doctor immediately admitted me to St Luke Hospital for delivery. Thank goodness we had our hospital luggage ready in the car for just in case I was to go into labor early. This was nerve wrecking because I wasn't prepared to have Maddox until the following Monday. But Maddox was saying he wasn't waiting till Monday!! So at the hospital, the doctor decided to monitor Maddox and see how he does over night and wait till the morning to induce or perform c section. Either vaginal delivery or c section will ultimately depend on Maddox. Tuesday night was definitely a long night. The anticipation and worrying about Maddox was on extreme high. We told several friends and family of the news. Lenise and Michael Ross immediately drove from San Antonio and stayed by our side and kept us company for the evening. They were so sweet and supportive as well as they helped the night go a little faster. My family and Nancy came the next day from Grand Prairie. Everyone's support was definitely needed and appreciated.
Wednesday, March 16, 2011
3/15/11 Dr Visit Update
I had my Dr Ivey appt and Ultrasound appt yesterday. So far everything is looking good. Maddox is doing well and moving well. His head is down and is in ready mode position. :) He's currently about 5 lbs and 12 ounces. So he's on the lighter side. Which is fine. Actually my mom says all her babies comes out to be 6 lbs. Dr Ivey also mentioned that I'm 1 centimeter dialated. So the process is starting. I could be at this stage for a while. Who knows when labor will come. I just know that we're getting close. We hope Maddox doesn't come until the 28th just so that he will have more time for his lungs to mature as much as it can. We're just getting nervous and anxious as the time is getting closer. Please continue to keep Maddox in your prayers.
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