Funeral Arrangements

Saturday, April 23, 2011
1:00 PM
Kingdom Hall of Jehovah's Witnesses
2101 E. Mayfield Rd. Arlington, TX 76014

Thank you so much for your prayers and support.


Tawa and Jenny

Our Beautiful Precious Baby Boy Maddox..... April 11, 2011

This is the most difficult entry.....

After a restless night of sleep, we hastily make our way to our son's bedside.  The hope is that his numbers have rebounded and Maddox is on his way to getting better.  We arrive only to be disappointed.  His numbers haven't improved but in reality they've become worse.  The doctor who was on duty who happened to be the Director of the NICU comes into our room and gives us the second talk, a talk that no parent whats to hear let alone try to grasp.  Maddox had a very rough stretch earlier and we had come to that point; there wasn't anything left that they could do.  They tried a variety of acute medications but that didn't work.  In fact, adding more acute medications would only make matters more complex.  We were back to why we were there--the structure of our son's lungs.  The volume of the lungs were ok but the formation of the blood vessels were not.  They formed abnormally which is ultimately the defining thing with CDH.  There just wasn't enough room in the blood vessels to get oxygen to the rest of the body.

A little later Maddox's primary doctor come into the room (Dr. Arnold).  She relates how she heard Maddox had a bad weekend, would get caught up and come speak to us.  We knew what that talk would comprise of but didn't want to accept it.  She tells us that despite all that they are doing, Maddox is trying to die.  He just can't do it any longer.  His oxygen levels was in the 60s and were slowly declining.  They were so low for such an extended period of time, it was probably causing irreversible internal damage.  She gives us the options.  Do we leave Maddox on the ventilator that he is on or do we switch ventilators, make him comfortable so we can hold him and be with him?  Either way, the life in our son was slowly leaving. We had never held our son because he had always been unstable.  We made the decision to switch ventilators so we could hold him and at that point it would only be a matter of time.  Family and friends rushed to be by our side.  They made their way from Dallas, San Antonio and here in Houston.

Holding our beautiful son Maddox for the first time was an experience we will never forget. We took turns holding him and we continued to trade off. It was truly amazing. Maddox has touched our lives and other peoples lives there at the hospital. He taught us love, the deepest love you could ever have for someone. But it was heart breaking at the same time because we knew our son was slowly dying. His heart rate and blood pressure continued to dwindle over the course of the day. His colors and features continued to change as well. We continued to tell him that Mommy and Daddy LOVED him SOOO MUCH and told him we were SOO PROUD of him. He fought HARD as long as he could. We told him we will see him in paradise and will hold him and the best thing is that he would never know what transpired.  At 5:13 pm he took his last breath in his father's arms. We all couldn't stop crying. It was the most devastating thing that could happen to us, for anyone really. We continued to hold Maddox tight in our arms and continued to talk to him late in the night. Holding our lifeless son was just heartbreaking. No parent should ever go through this. The hardest thing was leaving our son and knowing that he wouldn't be coming home with us. We loved him sooo much. Words can't describe the pain we felt as we gave our Beautiful Baby Boy Maddox to his nurse.

Losing your child is the hardest thing anyone can go through. We find comfort in knowing that he's not suffering. Maddox is now in the best place--Jehovah's memory. We know we did all we could to have the best care for Maddox and we know for a fact Maddox did all he could to fight for his life. The entire staff here at Texas Children's were great from beginning to end.  We are comforted in knowing he's just asleep. Oh how we yearn to see, hold and kiss him in paradise! The continued support of friends and family and most importantly the support of our God, Jehovah will continue to provide the comfort that we need.

Maddox will always be our beloved firstborn beautiful son. He gave us 19 wonderful days.  We love him and miss him soooo much.

Maddox Soukanh Torry

  March 23, 2011-April 11, 2011

 Cozy in Dad's Arms

Much love to you all and thank you for your ongoing support

Tawa and Jenny Torry

7th Year Wedding Anniversary .. April 10, 2011

Our beautiful son is 18 days old and today is our anniversary. Maddox is the most precious gift for our anniversary this year. To be honest, the scripture in Psalms which speaks of children as an inheritance is something I've never come to appreciate until I became a parent. Maddox is truly an inheritance and a huge blessing.  His most precious life is something we never take for granted each day we are with him. He is constantly fighting for his life. We continue to cheer him on and pray with him so he can receive the strength he need to endure. We are sooo PROUD of our son and we LOVE him more than we could ever imagine. He has come a long way and shows us how strong he is. He has overcome multiple surgeries, ECMO and a number of other things.We tell ourselves and tell Maddox that there is no way he can give up now.

Maddox is not doing too well today.  Earlier today his saturation or oxygen levels went to the low 60s.  It was concerning. At a minimum, the doctors wanted him to stay at 85. They would have preferred the 90s but given some issues they were trying to work through, they were content with 85.  Since the day of his birth never had his numbers been so low. When he was born it was in the 50s. So that is why he was placed on ECMO. ECMO is not a route that can be repeated from a medical standpoint but even if that was possible we will not put our son through that again.  His numbers did rebound to around 80 but it took a very long time.  This is when the doctors had "that" talk with us.  He is very sick, they've maxed out of all that they can do and the outlook is dim.  Every time he moves or is handled by someone his numbers go down. So they had to raise his morphine to sedate him even more. Along with that they had to give him paralytic medication to paralyze him because when he would move, his numbers would immediately go down.  Later this evening his numbers dipped to the 60s.  We stayed by his side until midnight and there was no improvement. We will go visit him again in the middle of the night. The weight of our heart just fell to the floor. I can't stop crying. We both continue to pray with Maddox and repeat to Maddox that he will get through this. We need our baby son. Please continue to pray for our baby boy Maddox.

 Our son celebrates our anniversary with us.. :)

Progress Report--April 9, 2011

Maddox had some struggles today as there was a constant battle to keep his saturation levels stable.  He had a lot going on today.  First, his breathing tube migrated up just a bit so it had to be moved back down. Second, a tube that had been placed in his stomach to act as a drain following one of his surgeries was removed.  Also, while on ECMO and a few days after, he had to remain essentially in the same position.  After 16 days they were finally able to adjust his position.  As expected he did not like this. These different adjustments made him very irritable thus making it difficult for his numbers to remain stable.  Overall though, he is about the same as before.  They are trying to wean him off some of the oxygen support that he is on although not much progress was made today.  We continue to take it a day at a time and the doctors continue to move at the pace that Maddox sets.  He is the boss.  He did enjoy the visit of family and friends that traveled from Florida, Dallas, Grand Prairie and Corsicana.  Tonight he finally calmed down with the help of his new friend.

Maddox sleeping peacefully with his sea horse that plays lullabies

Update-April 8, 2011

We left you with Maddox being on four medications to control his blood pressure.  He was also placed on nitric oxide.  This is typically given to open the blood vessels so blood can flow.  To no surprise it didn't work for Maddox since his hypertension is the result of an abnormality or structural damage with his blood vessels in the lungs. Thankfully though, his blood pressure is now under control.  In fact, up to this point, they have weened him off two of the medications completely and have started working toward weening him off the other two.  His blood pressure has been stable.  Our hope is that it will remain as such and eventually come off all blood pressure medications.  This is important because as long as he is on blood pressure medication he cannot have his mom's milk. Right now he has to rely on a nutritional mix that has been formulated called TPN. Prolonged use of TPN does cause liver damage.

While we are able to celebrate the success with his blood pressure there is yet another issue.  His oxygenation has been a concern.  Currently, he is needing the full support of the ventilator (100 %) to maintain acceptable saturation levels (the measure of oxygen he has in his blood).  This is concerning because should those levels drop there is no room to increase the support, not to mention too much oxygen can have adverse side effects on the eyes and brain. The doctor informed us that Maddox is border line for needing ECMO.  This was very disconcerting because prior to his coming off ECMO, the surgeon explained that he would not be a likely candidate for a return to ECMO.  So as you can imagine the anxiety and concern for our son that is resting upon our shoulders is heavy.  The thought is now that his blood pressure is under control and they have somewhat of a handle on his fluid management, other things will fall into place.  A pulmonary specialist came by to examine Maddox and gave the go ahead to try a different medication to try to dilate or open up the blood vessels.  You would never believe the medication:   a form of Viagra.  Evidently this medication works great in newborns that have problems with hypertension.  Throughout all of this, Maddox is still fighting and we know it will be a matter of time before we are taking him home.  Today, we saw signs of a regular newborn--irritability and fussy :)  Although he's not able to vocalize himself due to the breathing tube, he let us know by facial expressions (crying) and body movement that he didn't like what was going on. It's heartbreaking because we still cannot hold our son to comfort him like we would want to. Once he becomes more stable then we will be able to hold him. Hopefully that will be soon.

Also, we have to tell you about something cool that happened to us.  As you may remember from a previous post, Maddox's doctor has her own reality show on TLC called 'The Little Couple'.  For a couple of days, her camera crew was here following her around taping for the new season.  Well they actually interviewed us for one of the episodes.  We had an opportunity to talk about CDH, Maddox, etc.  The new season starts in May/June so look out for us.......We told Maddox that he's only been here two weeks and already making his mom and dad famous (maybe a sign of things to come? :)

Dr. Jen Arnold and Maddox

Maddox sound asleep today

Day 1 After ECMO.. April 6, 2011

The ups and downs continue.....While we were happy that Maddox came off ECMO, we knew there would be tough waters to tread.  That was certainly the case.  Maddox came off ECMO April 5th.  We went to bed with a measure of relief that night only to awaken to bad news.  His blood pressure dropped over night and it was alarming to doctors.  The low blood pressure caused a chain reaction of other problems and completely threw his unbalanced system off even more.  Without the right amount of blood going through his lungs it would only be a matter of time before they ran into oxygenation issues.  We mentioned that Maddox came off ECMO on a ventilator called an oscillator which would cause his lungs to stay open all the time as air passed through.  One of the risks is that it can sometimes be hard to push blood through the lungs thus causing pulmonary hypertension. This was the case with Maddox.  We must say that this was a risk that had to be taken because the oscillator was the only way Maddox was coming off ECMO alive.  They worked relentlessly all day to try to get it raised.  Since he was born, his blood pressure had been on the low side but they were able to control it with medication.  Now that medication no longer did the job.  They tried another medication on top of the one he was already on and that was unsuccessful.  They then went to a third and that was also unsuccessful.  Against reservation, Maddox was put on a fourth medication.  By the end of the day he was on four different medications simultaneously for blood pressure with all of them just about maxed out. This was in addition to a couple of antibiotics that he was on due to previous surgeries.  They were able to get his blood pressure under control.  The bad thing is that it took four medications to do it.





 

Maddox coming off ECMO... April 5, 2011

At 9:30 am we were met by Dr. Arnold with much concern.  Maddox continued to bleed.  In fact, he started  to bleed from new sites.  Maddox needed to come off ECMO.  Each morning at 10 am several attending physicians, surgeons, directors, a professor and other doctors from other disciplines meet to talk about Maddox; his progress and care for the day.  Each day we are present at those rounds to listen.  Today there was a sense of urgency about our son.  His bleeding was out of control.  It was time for Maddox to show what he could do.  He was coming off ECMO.  We must say that while his numbers were not great for someone to come off ECMO, they were acceptable.  The flow of the machine was at 50 (lowest) and his blood gases looked good.  Typically, when someone is coming off ECMO, a trial is done to make sure they are ready.  In our son's case, there would be no trial.  He was coming off whether he was ready or not. As you could imagine this was really stressful and scary.  Thoughts went through our head 'would this be the last time that we would see our son alive?'  The fact of the matter is that only 50 percent of babies make it off ECMO.  Counting the time he was placed on ECMO, this would actually be his 5th surgery. Maddox's first surgery was when he was placed on ECMO. He had to get the ECMO canulas connected to his artery and vein in his neck. The other 3 surgeries were previously mentioned in the blogs. The operation to remove the canulas from Maddox' neck was done by a one of Dr O's partners' named Dr Lee. He's really good too. He's one of the 3 that handles CDH surgeries on the team. We spent as much time with Maddox as we possibly could.  We read the daily text together and how fitting it was Psalm 65:2.  We prayed together and now it was time to wait...... 

Several hours later, Dr. Arnold came to us and brought the great news to us that Maddox operation was successful and he's tolerating being off ECMO. He's completely relying on the ventilator. That means his lungs are working some. Before getting off ECMO they decided to change from the conventional ventilator to one called an oscillator. The thought was that his lungs would receive optimum support from this one.  It's a gentle type of ventilator that jiggles air into the lungs and keeps them open to allow air to pass through quickly. Their thoughts were correct.  He responded well to this ventilator. The oxygen support that he needs is a little higher than they want but they'll work to get that down some.  Nonetheless, today was a big day for Maddox. This is a HUGE hurdle that Maddox overcame.  After 13 days, he is finally off ECMO. Our son is continually fighting and he's doing such a great job at it. Although we aren't out of the woods, we still have ways to go for his lungs to work on their own. Thanks to all of the prayers and thoughts that were made in Maddox's behalf. Thanks to Jehovah! :)

Below are some pictures of Maddox's after ECMO. It's so wonderful to see him off of the machine!!

The oscillator machine to the left.

 Nice to see full head of hair.. :)

Dr. Jen Arnold

Every day here we learn new medical terminology. I learned that on each baby, there's an attending physician, fellow, and a doctor completing their residency. The attending physician has completed their fellowship and residency and supervises the others. That's pretty much the description in a nutshell. In this case they all belong to the Neonatologist group that cares for babies in the NICU. However, in Maddox's case, he doesn't have a residency doctor. Last week the attending physician was Dr. Gillory. She was awesome and worked non stop on Maddox's care.  This month of April, to my pleasant surprise, Dr Jen Arnold is Maddox's attending physician. I watched her show on TLC network called "The Little Couple".

http://tlc.howstuffworks.com/tv/little-couple/about-the-little-couple.htm

Most of you probably may have seen their show. It's really interesting and I enjoy watching them. She can really empathize with children as she herself had about 27 surgeries growing up. She is extremely sweet and very respectful in person! She's doing an amazing job in caring for Maddox. She's really good at what she does!! I got the chance to take a picture with her. Below is a picture from today. :)

Update - Monday, April 4, 2011

As was mentioned previously, the doctors are working on a plan to ween Maddox off ECMO. The ECMO machine is what's keeping him alive and are doing the function of his heart and lungs. So it's pretty scary to hear that they are wanting to get him off of ECMO as soon as they can. But they need to challenge his lungs and to test if he's ready to get off ECMO. The typical run on ECMO is 10-14 days.  Maddox is on day 12 so it's time to make an attempt.  It's crucial on getting him off of ECMO because he will continue to bleed in the area where he had his surgeries. Also, staying on ECMO presents another host of problems that can potentially harm Maddox.  In order for the machine to function, Heparin (blood thinner) is fed through the circuit to prevent the machine from clotting.  For someone that just had surgery, blood thinner is the last thing that you want.  It's a delicate balance to say the least.  They have to put just enough heparin in the machine so will not clot but not put too much or Maddox will continually bleed out. 

Today Maddox isn't doing too well. He's been bleeding alot in different areas. The doctors said the only way to stop the bleeding  is for him to get off of ECMO. The doctors were concerned with his bleeding so they ordered Maddox to have a head ultrasound to see if he has any bleeding in his head. And the test came back negative. Whew!!!! Since early this morning, they gradually lowered the flow of the ECMO from 130 down to 80. It has been 80 since 4 pm this afternoon. The lowest they can go with the flow is 50. Which means the lower the flow, the less support that is given to Maddox.  In turn, Maddox lungs are working and is tollerating the less support on ECMO. This is good news. The ENT came and put a new breathing tube with a cuff down his throat. The new tube is helping with eliminating the leakage of air that was a problem with the last tube. This tube goes toward his lungs and to help inflate it so it can work. Evidently Maddox didn't like the hassle of the new tube and so his saturation numbers went really low to the 70s. Maddox doesn't really like to be bothered and is very sensitive. So the doctors decided to wait till tomorrow to ween him off of ECMO while Maddox's numbers are at it's best. The trial off ECMO will be done tomorrow. This is done where they clamp down on the circuit so the flow is not giving any support to Maddox for 20 mins first and they will do a blood gas every 5 mins to see how he tolerates it. And if he does well they will do it for several hours and his ventilator support has to be at a setting of 50 or lower. Because when Maddox gets off of ECMO, the only thing that will support him is the ventilator. They will need room to work with in case he needs more ventilator support. The highest setting for the ventilator is 100.  All of these factors is what contribute to the final decision that he is ready to come off ECMO.  If he can't get off of ECMO, then they will have to change the circuit because currently the circuit has some blood clots in it.  Please continue to pray that Maddox lungs are strong enough to get off of the ECMO machine tomorrow. It's definitely a roller coaster. Maddox is fighting and is hanging in there. We love him sooo much!!! He was sleeping so peacefully tonight. He's such a beauty! Awwww..... :)

Below are some pictures to get an idea how the ECMO machine looks and how Maddox's room is set up...

 Maddox is connected to the ECMO machine below. : - (

 A very sweet nurse name Carleen made a name tag for Maddox. Purple is for team Maddox belong to.

 The machine to the left is the ventilator.

Progressing....:) April 2, 2011

Maddox is doing better today. His numbers and stats are stable. His urine output is working as it should. Dr Cass spoke to me today and said that they are happy with his progress thus far considering his previous surgery. So far no new complications have arisen. We are very happy about that. Now they are working on trying to recruit his lungs to work on their own so they can eventually start weening him off ECMO.

We just got back from Maddox and he was awake and alert for almost 45 mins! Little man is just too funny. His eyes were bright and wide open. His eyes are the most beautiful thing ever. It pierces our soul to the core. We are so proud of him. He just loved hearing both his mommy and daddy's voice. He loves to listen to his dad read to him.  He knows for sure that we both love him so much and we will always be by his side cheering him on. He's such a strong baby and continues to fight! : )  Maddox has a long way to go but we have faith he will  get there. Looking forward to the day we can take him home.

Below are some pictures we took tonight with the camera phone. It's a bit blurry...

3rd Surgery :**- ( March 31, 2011

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

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

Daddy reading to his precious son. :) 

 Maddox holding daddy's thumb.

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 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.

Maddox-  right after surgery

- Jenny Torry

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

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.

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.

3D pics of Maddox - 36 weeks

Here are some pictures of Maddox at 36 weeks. The placenta was in the way and was not able to get a good capture of his eyes much. He was pretty much sleeping here. The doctor who did the sonogram was very funny and nice. Maddox looks just like his dad, I tell ya! :)

We made it to Houston....

Well, we finally made it to Houston. We've been here 5 days and time is flying. I would say that's a good thing. We miss our Lil Bailey terribly. I hope he'll be ok.

 I can't believe I’m almost 37 weeks now. I went to my doctor's appt this past Tuesday and all my results for my prenatal care are looking good. Blood pressure 100/78. My amniotic fluid level is 11 percent or centimeters which is normal. Maddox's heart beat is 153 which is great. They also put me on a Fetal monitor for about 20 minutes to record and monitor how Maddox heart is doing. And his results and numbers were great! The nurse had mentioned that he's heart beat is great and his signs show that he's a happy, stress free baby. :) I was soo relieved!! Tawa mentioned that Maddox is just like his dad. J Tawa is so proud of his son.

 My obstetrician name is Dr Ivey. Dr Ivey delivers all the babies for Dr Oluteya (Maddox’s doctor) at the Fetal Center. When we first had out first visit with Dr Ivey several weeks ago, I'd mentioned that we were Jehovah’s Witnesses and told him my stand on blood. To my surprise his reaction was very respectful and pleasant about it. He was also knowledgeable in regards to our stand because he said he had talked to the HLC (Hospital Liaison Committee) in the past and it sounded like he was educated about the different non blood management and options. And too, he asked me of what was allowed by my conscience and so forth. Anyways, I just thought that this was a pleasant reaction to receive compared to my other experience with other obstetrician in the recent past.

 I’ll be having doctor’s appt twice a week until I have the baby. Oh yeah, if I don’t have the baby early which I hope not. I’ll be having Maddox  for sure on Monday, March 28^th. Dr Ivey prefers to induce me when I’m 39 weeks, so that the team can be prepared for Maddoxs care. That’s only two weeks away!!!

So far Houston has been treating us well. The weather here is humid and has been a lil chilly lately. My boss was awesome enough to let me work down here at the Houston Branch until I have the baby. Tawa was not able to transfer down here. :( The HLC was able to get us in contact with Sister Kelly who graciously opened her house to us and allowed us to stay with her during the course of our stay in Houston. She is such a sweet and loving sister!! It's truly a blessing upon blessing to be a part of Jehovah's loving organization. Jehovah's hand is never short and we have seen this in the course of the last several weeks. We have complete trust and faith that He will take care of us. We are just simply amazed at the support and love the family, the brothers and sisters have displayed toward us three. The love and support means sooo much to us. We can't thank you enough!!

Love - Jenny Torry

Amazing story...

My cousin sent this link to me. It brought tears. It's a amazing and touching story of a mother's touch. Definitely an inspiration for me. Below is the link.
http://www.drmomma.org/2011/03/when-doctors-lost-all-hope-mothers-love.html

Maddox's Baby Shower 2/19/2011

Our dear and closest  family and friends  threw the most wonderful and loving shower for us. We absolutely LOVED everything!!!! The cake, decorations, party favors, music, the food, all the preparation and most importantly the support from everyone who came was truly amazing!!! The hard work that was put into the shower was definitely appreciated from the deepest part of our hearts. We all had a great time! Can't wait to show the pictures to Maddox when he gets here, to show the love and anticipation that was expressed toward him for his expectant arrival. Tawa, I and Maddox were definitely encouraged and felt the love from everyone who showed their overwhelming support and love. Below are some of the pictures from the shower.. :)

Look at this amazing party favor!!!!

 The beautiful  and ooohhh so delicious cake!!!

The cutest table set up! :)

 Opening gifts.. :)

Tawa and I

Houston Bound March 6th

We have confirm the date that we will be leaving for Houston. Sunday, March 6th, will be the big day. The doctor wants us to be down there when I'm at 36 weeks, just in case I have Maddox early. Although I'm not due till April 4th, it's a concern of the doctors that I can have Maddox early.
 
We're going to miss our little Jack Russell, Bailey sooooo much!!!!
He's like our little son. I know my mom will take good care of him. 
As of this week, we only have two weeks left!! :) yikes!!!

What is CDH?

I'd mentioned earlier in the last blog that I was going to explain in detail what this condition is and how it's affecting Maddox.... well....

Congenital Diaphragmatic Hernia, or CDH, occurs when the diaphragm does not fully develop during gestation (around week 7 - 10 weeks). This creates a defect, or a hole in the diaphragm. There is no known cause of this defect. About 1 out of 2500-3000 babies gets this life threatening condition. The diaphragm is the thin muscle that separates the stomach contents from the chest cavity. The result of this defect is that the contents like the stomach, intestines, spleen and liver can migrate into the chest area. This impacts the lung growth. Since the lungs are not able to fully develop the way it should then the baby can experience dangerous high blood pressure in the lungs, or pulmonary hypertension. This is going to be our main concern for Maddox. There are different levels of severity with CDH. In Maddox's case, he has a severe left sided congenital diaphragmatic hernia, which means part of his liver is in his chest. The liver is more dense and harder than the stomach and intestines so the liver does not budge to allow the lungs to grow. Maddox had two echos done where a cardiologist checked the function of his heart and to see how well it's doing. The cardiologist said although his heart is moved to his right side, his heart is doing great! That was great news to us! : )

Tawa and I have never heard of this condition before in our life until October 28, 2010. At 17 weeks, we went for a 2nd level ultrasound screening. I noticed something was wrong when the screening was longer than normal. I started to be alarmed when the doctor was concentrating hard on his chest and stomach area for more than 40 minutes. Then he broke the horrible news to us, my heart fell and I just couldn't stop crying. I couldn't believe that this was happening to us. Words couldn't explain the hurt and pain that we both felt from that point forward. Ever since then we have prayed constantly and relied on Jehovah for strength to cope with and have prayed that Maddox's  lungs grow. We have done so much research, talked to many doctors to get 2nd/3rd opinions and so forth. We did find a good team in Dallas but they weren’t too cooperative with respecting our religious beliefs. However, we felt much more comfortable with the care that Texas Children's Hospital has to offer our son. The doctor in Houston has previously performed CDH surgery on a JW baby successfully without the use of blood. (my previous blog entry talks about this) We met with the doctor and the meeting went well.  With that said, we have decided to go down to Houston for Maddox's care. We will be leaving the first or second week of March.  Maddox will require surgery as a newborn after he is stabilized to push down his stomach contents back into place and then the doctors will need to close up the hole in the diaphragm.  This will also require Maddox to be in the NICU for awhile and we may end up staying in Houston anywhere from 1 to 2 or 3 months depending on how well Maddox handles the surgery and recovers. 

Friends and family have been really supportive and we both appreciate it so much!! We couldn't have made it this far without the strength and comfort from Jehovah. One good scripture that I like to keep in mind and has given me much comfort is Ecclesiastes 11:5. I've also recently been getting a lot of support from other moms who have children with CDH. This has really helped me with research and getting real live experience. Talking to different ones who have gone through what I'm going through and can relate really does help. I've heard sad ending as well happy ending stories of CDH.  One mom gave me a nice comforting thought that has helped me to actually enjoy my pregnancy.  She'd wrote, "Miracles can and do happen...keep the faith, enjoy your baby as Maddox is safe inside you! :)" I told Tawa this and this has helped us both to just enjoy Maddox as much as we can as he is totally safe inside of me. That's the most important thing right now; that our son is safe and sound as can be. As long as Maddox is inside of me he's doing just fine as I am breathing for him. Maddox is kicking and so active, We both know that he will be a strong fighter when he gets here and we will be by his side fighting alongside him.  Thanks for all of your love and support! We "3" appreciate it so much!

Visit to Houston

We drove down to Houston this past Sunday and stayed there over night.It was about a 4 hour drive. We had a consultation on Monday morning with Dr Oluteyah who is the Pediatrics Surgeon/Co Director of the fetal center there at Texas Children Hospital Fetal Center. The reason for the visit was to see if we could find a team that could provide the best treatment and care for our son Maddox.  Dr. Oluteyah was extremely nice and patiently answered all of our questions. He also explained further on the condition and was more detailed on the treatments that are available for Maddox. Most importantly Dr Oluteyah stated that he will do all he can to uphold our Bible base beliefs and we felt that he sincerely respects that. And that’s what we have wanted to hear. They have a close knit team that specializes with CDH. (I'll explain later on another entry the details on this condition and how it's affecting Maddox) They deal with about 22 - 23 cases of CDH a year (which is more than Dallas Children Medical center handles). We believe that this visit was a successful one. We left there with a sense of hope and confidence that Maddox would get the best care and treatment at Texas Children. This is something we have been praying for.

This decision is not an easy one as we both will need to relocate in Houston for about 3 to 4 months. Of course we won't be working down there. The doctor strongly recommends that we should be in Houston around 36 weeks, since Maddox can come at any time between 36 - 40 weeks. And the additional 2 or 3 months will be the time that Maddox  will be in the hospital. And much much more we have to factor into making this decision. But our main concern is that for our son Maddox. We pray each and every day that his lungs grow and that we will get through this. We know that this Lil' man will be a fighter as soon as he gets here!!
We will pray earnestly regarding this huge decision making and we will have to decide by the end of this week. Please continue to pray for Maddox. : )

Below is the link that you can watch and read.
The first link is about a Witness couple who had a son who had CDH along with being a premature baby. Dr. Oluteyah was able to perform the surgery without blood!  This is the story that drew us down to Houston for the consultation with Dr Oluteyah. Amazing and touching story!! 

 http://www.myfoxhouston.com/dpp/community/give_miracles/100322-miracle-on-fannin-street

This link is the same doctors who perform fetal surgery! Just shows the high level of skills these doctors have! 
http://www.msnbc.msn.com/id/18645369/ns/dateline_nbc/

30 weeks!!!

Less than 10 weeks left and Lil precious Maddox will be here! We can't wait and so exited!!!

Jenny Torry