Surgery complete!

We have the best news regarding surgery. There was almost no blood lost. Gabriel came through so much better than anyone expected. They said literally as soon as they moved the liver, his oxygen levels came way up. They are cleaning up and doing an xray of the lungs, and then we should be able to go in, probably in about 10-20 minutes!! We can't believe we can go in to see him so soon. The liver is swollen, which they said is normal, so they couldn't close him up yet. He has a temporary patch over his abdomen, which they hope to remove and close him up within the next week, depending on how he does. He is still a sick little boy, and we have been cautioned about bleeding that could still occur, but the prognosis is good now. We are heaving a huge sigh of relief - and can feel you all breathing with us.

First Update

Surgery was officially underway at 12:05 Indy time. The ECMO director just came in and told us the liver is down and Dr. Rouse is beginning repair of the diaphragm. There is diaphragm on both sides (which he was fairly certain of) and the big news is there is diaphragm posteriorly, which he was not sure of. No bleeding problems so far. We have a ways to go yet, but this is the best case scenario we could get.

On another note, there was a mass held in the chapel at 12:15, which Josh's family attended. They just returned from that and said the mass talked mostly about when the angel Gabriel visited Mary. We took that as a hopeful sign. Before the mass, Josh and I went to the chapel to pray and to write in the prayer book. Josh opened the bible to a "random" page and we read. The verse we turned to in John spoke of Christ's second miracle, when Christ said to a father that his son would be healed, and he was. Also, just before we left Gabriel's bedside, they repeated a blood gas and his level was up around 270 (remember, they have been saying they would be happy with 200). His blood pressure was excellent all night and all morning, indicating that he got a good night of rest for today.

We added two more pictures, of Justin and Kendrick holding hands with Gabriel.

Waiting . . .

The time for the surgery is fast approaching. I noticed the time that shows up on the post is about three hours earlier than when we actually post them. It's about 9:30a.m. now. Gabriel had a good night. His O2 level was about 153 (200 is preferred). It looks like lying on his belly helped. The fact that his O2 level is better will help when he goes to surgery. Dr. Rouse could not give us any idea of Gabriel's chances of making it out of surgery, as he is very concerned about the risks for bleeding.

Thanks again for all your prayers and comments. It's nice to know how many people are praying for him. Gabriel has already surprised the medical staff once already, when the second x-ray showed more lung tissue. Dr. Rouse said it is very clear to him that Gabriel wants to be with us and wants to go home. Gabriel has shown that with everyone's prayers, his strength, and will to live, anything is possible. We think he was named appropriately: Gabriel means strength from God. We know that God is holding him close, until we can.

Surgery Scheduled!

Dr. Rouse reviewed the films with us and wants to do surgery tomorrow, around 11AM Eastern Time. This news is good and bad. The CT shows he does have lung tissue nearly all the way down, but it is compressed from the front by the liver and the heart, and they don't know how well the lungs are developed - but they are there. They have him rolled over on his belly now with the ventilator going to help expand the lungs and get better volume. Ultimately they need to get the liver out of the way to really see how the lungs can do, which is why they are doing surgery tomorrow.

Here are the risks:
Bleeding: The liver is what needs to be moved and it is easily injured and also bleeds easily. Also he is on heparin, a blood thinner, for the ECMO which increases the risks for bleeding. Even if things go well in surgery, bleeding could start at a later time as well.
ECMO: B/c of the O2 levels being a little on the low side still, they can't wean any lower like they usually would. If he has a lot of trouble after, they won't be able to turn up the support much more than what he is already. Also, they will need to do some of the surgery with him on his back, and some with him on his tummy, which means he will have to be turned with the cannulaes in his neck.
Blood vessels: B/c the liver developed up in the chest instead of the abdomen, the blood vessels developed there too. Moving the liver down poses risks for stretching or kinking the vessels.

They also mentioned that there will probably not be enough room in the abdomen for the intestine once the liver is moved back down, so they will have to leave some of it out and gradually work it back in over a few days (the intestines will be up in a "volcano shaped" cone). I get the impression that this is fairly routine in such a case and this is the least of our worries.

CT results

Yesterday was a rough day. The low O2 sats had everybody very worried about Gabe and whether or not surgery was even an option anymore. Dr. Rouse felt that the venus canlus was a little shallow. They did a procedures to put it 3cm deeper. We asked if this would improve the o2 stats and he didn't think so. It was done to improve the flow back to the machine.

He had his CT scan this morning, which was quite a spectacle to watch. (See pics below).I think I counted about 8 people working together to get him down the elevator and in the scanner safely. As we were standing in the doorway of the scan room, watching, I looked up and Dr. Rouse was standing at my elbow. He is Gabriel's surgical member of the team. He has been absolutely amazing with us and with Gabe. On a side note, Thursday night he walked over to my room (which is quite a hike from Riley to IU) to let me know Gabe was not doing very well and personally wheeled me to his bedside and stayed around while we visited. Friday night, hours after the cannulaes had been placed and ECMO was underway, Josh went back to the NICU to see Gabe one more time before bed and Dr. Rouse was just sitting at his bedside, as if holding vigil. I can't say enough how fortunate we feel to be in such good hands.

Anyway, back to the CT results. Dr. Rouse came out as soon as the scan was complete to talk to us. The brain looks good, no real evidence of damage or seizure activity, just a little normal fluid. The hernia appears to be more one big hernia, as opposed to a double hernia. He used the term 'morgagnia's hernia', but I haven't checked spelling on that. The hernia is more to the front and stretches pretty much all the way across. There is diaphragm on the sides and in the back, he thinks. He is going to look at the films when they are printed and then go over them with us. Surgery is still an option (We think they were feeling more pessimistic about that yesterday). He actually has more lung tissue on the right than on the left (which was unexpected) but what he has is not well inflated b/c of the location of the liver. They are increasing the ventilator some to try to inflate the lungs and see if they can get better volumes. From what we understand so far, this will likely be the big indicator for surgery. On another positive, his O2 levels were back up around 100 today (yesterday they were in the 50s). They would still prefer levels around 200, but progress is progress!

So again, we wait! Wait to see if his O2 levels improve enough to start the weaning process again, and wait to see what the films show about what is left of his diaphragm and how much lung he has. Thank you again, and again for your posts, your well wishes and your prayers.

Still waiting...

Still waiting for news from all of the tests ordered (the EEG and the abdominal xray haven't been done yet). I just wanted to post quickly to say how much we appreciate all of the comments. It is a nice break from sitting at the bedside, especially since we can't realistically be on the phone with everyone we want to. Justin and Kendrick are doing well, considering all they have been through too. Josh is rocking Kendrick in the waiting room, and there is a pool to see who falls asleep first. My $$ is on Josh. Thanks again for the support, it is really helping to keep us going.

Tuesday, May 29th

The staff had to bring Gabriel back up to 330 on the ECMO last night. (400 is max, he needs to be between 150 and 200 to repair the diaphragmatic hernia). One of the pediatric surgeons, Dr. Rouse, met with us this morning. He said Gabe has been having seizures, which happens in 30-40% of ECMO babies. Also his oxygen supply is low. The ECMO is working properly but his oxygen is at 50 and it should be around 200. Dr. Rouse told us the seizures and low oxygen could be related. They are going to do an EEG and ECHO cardiogram this afternoon to try to figure out the problem. Also will do an ultrasound of the diaphragm. Dr. Rouse thinks Gabriel might have a double hernia, since his left lung is so small. On the positive side, the scans of his head and kidneys showed no bleeding. Bleeding is a side effect of ECMO and would mean the staff would have to take him off ECMO.

Wish we had more positive news to pass along. Hopefully tomorrow will be better. The Drs said ECMO babies have good days and bad days. Thank you for all of your prayers.

Monday, May 28th

Gabe wasn't able to wean off the ECMO as much as we hoped last night. The staff got him down to 280 and he wasn't tolerating it very well. They had to bring him back up to 320. He was kept at 320 for a while. Today he's doing better, so the nurses are going to try weaning again: dropping by 10 every hour. Some people have been asking for our contact info at the Ronald McDonald House. It is:

Ronald McDonald House of Indiana
435 Limestone St., Room 27
Indianapolis, IN 46202
(317) 269-2247

Also, we spend a lot of our day in the NICU waiting room. The number there is (317) 278-4350 or 278-4351. Just ask for us when someone answers. For those who have our cell numbers, we don't get reception inside the hospital.

Sunday, May 27th

Gabriel has continued to stabilize. He has done well the past two nights. The doctors decided today they wanted to start weaning him from ECMO (or reduce the amount of support from the machine). The max setting is 390. They need him to be at a level of 150-200 for surgery. This morning his doctor decided to drop the level by 10 and see how he tolerated it. He has done well, so this afternoon they elected to drop by units of 10 every hour and monitor his progress.

We were with him this afternoon and he tried opening his eyes. Obviously we were very excited, as we have not yet seen him with eyes open. A typical side-effect of the ECMO is swelling, and his is worse on the left. He cracked open his right eye, and we were very excited. We know there are so many praying for us and for Gabriel and it is working. Thanks to everyone for your support.

Today he is stable. His stats are pretty good. The doctor told us if Gabriel continues to surprise them with his progress, they could consider surgery as early as Tuesday, although that is unlikely. They are trying to get him off of the blood pressure medicine, if he can tolerate that.

We are so grateful for everyone's prayers, it is really helping to keep us going. He's tough!!

Written May 25th

Gabriel Timothy is beautiful. For those we have not talked to, he was born May 24th at 12:01, weighing in at 8lbs/11oz and 21 inches long. He is tough and is putting up quite a battle. We ask that you keep him and all of us in your prayers.

The past 24 hours have been a roller coaster. Shortly after he was born, his stats looked good. That changed as the afternoon went on. xrays showed that the hernia was significantly larger than they had thought and the liver was up nearly to the heart - this meant there was very little lung development on either side and the prognosis was very poor. There was a good chance he would not make it through the night. Today, his blood work and blood pressure were still not good, meaning he was not responding to the current treatments well. B/c of the low lung volume, we were told he was not a candidate for ECMO (a life-saving treatment they try on many babies with diaphrag. hernia). We were preparing ourselves to take him off of the machines and let him go.

By some miracle, a repeat xray showed that his lung volume had improved last night. This meant that he was NOW a candidate for ECMO, although still at very high risk. We agreed, despite the risks, and the procedure was done. Essentially ECMO is a bypass system allowing a machine to oxygenate the blood, so his heart and lungs can rest. The ventilator he was on was turned up as high as it would go, which is very hard on the lungs if continued for too long. We have been in to see him since put on the bypass and he looks so much more peaceful than when he was on just the ventilaor. His blood work and blood pressure are significantly improved. He is stable for now, but we have been warned that we are in for a long haul and Gabriel has a lot of work to do. Still no guarantees, but we have hope.