"He Keeps on Surprising Me"

We checked on Vincent last night after the surgery and the first thing the nurse said to us was "He keeps on surprising me". His stats seemed to look ok. His Sats were high, his CO2 was close to where it should be and his heart rate was down a little. His blood pressure was still fairly low and he has a lot of fluid in his body (which makes him look really puffy).

The nurse said this morning that they are going to start to wean him off of everything. First, the Flowlan because that's what's making his blood pressure so low. Then they're going to try and wean him off the ventilator (they had it on max settings for the surgery). They're also going to wean him off of some of the pain medications he is on. She said that will take some time because they can get withdrawals...just as an adult would if they were dependent on pain meds. She also said they are going to wean him off the Pavulon (paralytic). She said it will be a slow process. He will begin to move fingers and toes, then hands and feet and eventually he'll wake up and start to move his head. She's also hoping that when he starts moving his muscles, he'll start to get rid of some of the fluids in his body.

Robert and I want to thank you for all of your comments and support. I would love to respond to everyone individually but it's just been so crazy with everything going on. But we do read them everyday and they really do mean a lot to us...so, thank you!! :)

Surgery Successful...

We were with Vincent most of the night and his stats weren't looking very good. As tough as it was to leave him, we thought we should try and get some rest. We came by first thing this morning and were surprised to find that his stats were looking much better. His blood pressure was a little low but they felt that this was their best opportunity to do the repair surgery.

They started at about 10:30 a.m. and were done by Noon. Dr. Lee came in after the surgery to let us know that everything went well. He said, as he suspected, the hole was fairly large...there was only a sliver of a diaphragm there. He also said he could see that the balloon did have some effect on the lungs...they seemed to have grown a bit as a result. To repair the diaphragm they stitched a gortex patch over the hole. Their hope is that the muscle will grow over the patch and reinforce the barrier between the abdomen and the chest cavity.

The next 48 hours are crucial. The doctor said there will be lots of ups and downs...that he will get worse before he gets better. They had to up his ventilator to the maximum settings and his blood pressure is still very low. They don't want us to touch him right now but we've been talking to him a lot. He's our little fighter...we keep telling him to stay strong and to fight his way out of this.

Surgery Tomorrow

We spoke with Dr. Lee and he wants to go ahead with the surgery tomorrow morning. He's hoping the Flolan helps bring his stats to a more stable level overnight but regardless, they are going ahead with the surgery in hopes that it will help resolve some of his issues.

We're just praying that our little warrior stays strong for tomorrow and keeps fighting.


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Another Rough Night

They had another rough night trying to keep him stable. They want to try one more drug to stablize him called Flowlan. There are some risks involved with the drug but they feel it's worth trying because they're running out of options.

Sorry this is so short...i really don't have the energy to write more. Please, PLEASE continue to pray for him..


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Just a Rough Day...

Vincent had a rough night last night and day today. His sat dropped several times and the nurses and doctors weren't really sure why. They don't believe it's an infection based on the blood culture results so far but they won't know for sure until tomorrow. They still have him on the antibiotics just as a precaution.

His heart rate has been a bit high so they did an ECHO this morning and it was determined that he has Pulmonary Hypertension. Basically, pulmonary hypertension occurs because the blood vessels in the lung are abnormally formed and/or too small. Because the blood vessels in the lung are small, the heart must pump against high resistance to get blood through the lungs. This could be resolved once the repair surgery is done but they obviously don't want to do the surgery until he is stable.

They tried a number of things to keep his sat up...they upped his NO and gave him a couple different types of medication to try and relax his heart. He seemed to respond well to whatever they did and as of now his sat is staying steady in the high 90s and his heart rate has dropped a bit. The doctor came by to talk to us and pretty much told us that they've done all they could to keep his sat up and if it drops again, there's nothing really more they can do for him.

We are hoping for an uneventful night and day tomorrow. Thanks again for all of your support...it REALLY does mean a lot to us. Please continue to keep Vincent in your prayers...

No Surgery Today

Whoever coined the term "CDH Roller Coaster" really wasn't kidding.

The day started out good, his O2 was at 58 and Co2 was in the 50s. His Sat & heart rate were also good. They said the surgery would be in the late afternoon if everything stayed the same.

We came by at around 4:00 to check in and noticed right away that things weren't good. His o2 was up to 100 and as we were there his sat started dropping. It was scary to watch but the nurses & doctors seemed to have it under control.

They had to take him off the ventilator and suction him. We just stood there watching the numbers, hoping to see them go back to where they should be. They eventually got him to where they wanted him and explained to us that he may have an infection. They took a blood culture and should have the results in a couple days. They put him on antibiotics just to be sure.

So, the surgery will most likely be tomorrow or Sunday but we'll see.

We just left him and he was looking much better. His o2 was about 70 and his sat was back in the 90s.

I just really want to be sure he's ready when they do the surgery. We'll see how he does tomorrow. I'll keep you updated.


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Quick update...

Vincent's x-ray looked good this morning. The doctor said they could see more lung growth in both lungs. As tiny as the left lung is, she said she could see that it opened up a bit more. His stats this morning were good...his oxygen was down to 48 and they turned the ventilator down a bit. However, we just checked on him tonight and it looks like his oxygen is back up to 70 and his CO2 is at around 65. So, we'll see how he does overnight. If things go good he should have his surgery sometime in the early afternoon. Otherwise, they may postpone it a day or two.


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A Little Bump in the Road

Well, yesterday Vincent was doing great! They had weened him off the Oxygen to about 58 and his CO2 was staying steady at around 50. He was peeing a lot and seemed a little less swollen then he had been.

But I guess overnight he hit a "little bump in the road" (as the nurse put it). His blood pressure went down so they upped his oxygen to 80 and gave him some medication which made him swell up again. I overheard the doctor talking to the nurse and she didn't sound happy that they upped the Oxygen...she seemed to feel that they didn't need to do that. So, they began to ween him off of it again. I just left him and his Oxygen was down to about 68 but his CO2 was up to about 70.

The surgeon came by while I was there and I was able to talk to him about the plans for Friday. He said he would like to see Vincent's Oxygen go down to about 50 before they do the surgery. He said the lungs can take an impact from the surgery and he felt at 50 there would be some "wiggle room" in case they didn't tolerate the surgery well.

They put Vincent's surgery last on the schedule for Friday. He said he wanted to put him last so they can assess his condition in the morning and also so they could take more time if they need it. I'm guessing it will be later morning or early afternoon.

UCSF said they would let us stay until Friday but after that we would need to leave in order to make room for patients coming in. We weren't sure what we were going to do after that. We talked about commuting but we live about an hour and a half away and we really didn't want to be that far away from Vincent. We're on the list for the Ronald McDonald house but they give priority to those who live out of state, so we didn't have much of a chance with them. Well, an amazing thing hap pend...I just got a call from the president of the company I work for and he said that everyone at the company put together a fund for Robert and I to stay in a hotel nearby. He also said that whatever amount they receive in donations, the company would match the funds. What an amazing gift...Robert and I are so grateful! They have been so good to us through this whole thing, it's really amazing. I'm really lucky to work for such a great company...they really are like family. Thank you CPS...I love you all! :)

No Mo' ECMO!

Yes, we are happy to report that Vincent is off ECMO! He is now on the hi-frequency ventilator and his stats are looking good! :)

When we checked on him early this morning they said that the X-ray results were very promising. His right lung seemed to have opened up some more and they felt it was a good time to do the trial-off. Initially, they did a trial-off with the regular ventilator and he seemed to to ok but the doctor was hoping for the numbers to be a little bit better. His CO2 was a little high and his heart rate seemed to be a little high as well but his blood pressure and Saturation seemed to be doing well. She said he was doing well enough that if they had to take him off ECMO right now, he would be ok but they were just hoping for the numbers to be a little better. They decided to try the Hi-frequency ventilator, so they put him back on ECMO to let him rest for a while. At about 3:30 p.m. they did another trial-off on the hi-frequency ventilator and his stats were great! The doctor wasn't sure why he didn't do as well on the regular ventilator because he seemed to be doing great on the hi-frequency ventilator. They just unhooked Vincent from the ECMO machine and it was so good to see him free from all of all the tubes. What a little warrior! We are so proud of him! He's doing great so far! :)

On a side note, they were having some trouble keeping him from moving around. Evidently, they've had to up his dose of Pavulon (the paralytic they give him) because he keeps fighting it. He continues to try and move and open his eyes. I think he's getting a little restless. He's definitely a little fighter. :)

They tentatively have him scheduled for Friday to have his repair surgery, so that's the next hurdle. We're praying he stays strong and continues to conquer this CDH!

Some Good News and Some Not So Good News

Yesterday we had some good news. They took an x-ray in the morning and the doctor said there was some improvement. They were able to see that the lungs have opened up a little bit more. They're going to continue to give him Albuterol hourly to help them open more before the trial off on Monday.

The rest of the day was pretty uneventful. There were no other changes. His saturation and heart rate have been steady. They have to keep him sedated because they don't want him taking spontaneous breaths but I do love to see him move his little hand or foot. :)

I checked in this morning to see how it went overnight and the nurse said that there were some clots in the machine but they didn't need to change anything out just yet. They may need to change out a part or the entire circuit today but she said for now it's fine. They'll keep an eye on it and be prepared if they need to do anything.

They're going take another x-ray later this morning and I'm hoping that will bring more good news.

I get my staples taken out today and discharged. They think they may be able to board us tonight which would be great! I guess if they have room they will occasionally do that for parents. Otherwise, we may just try and stay in the waiting room overnight to be close to Vincent. We have our name on the waiting list for the Family house and the Ronald McDonald house but we have yet to hear from them.

I'm hoping for no news today...well maybe some good news from the x-ray but other than that, no other changes.

Thanks again to everyone for all your support and prayers!! We have a lot of people praying for little Vincent and we REALLY want to thank you. I know a lot of you who follow this blog have been through this and know what we're going through and we really appreciate the support. :)

We Have a Name!

Yes, FINALLY, we have a name! After lots of consideration we've decided to name him............

...............drum roll please.............

Vincent Alexander Serna

This actually wasn't a name we were even considering but we came across it last night and decided it was just right for him. Robert remembered a movie that he really liked called Gattaca. I won't go into all the details of the movie but it was based in a "not-too-distant future" where babies are genetically modified to basically be "perfect". Anyway, Vincent, the main character, was born the natural way and suffered from a heart defect. Because of this, he was discriminated against and considered "genetically inferior". He takes on the identity of someone who has been genetically modified in order to achieve his goals and an imperfect Vincent transcends his deficiencies through force of will and spirit. We also found out that it means "conquering" which we we also thought fit. :)

We stayed with Vincent most of the day in the ICN but nothing much has changed. He's been keeping steady on the ECMO. We met with one of the doctors to go over the plan for the next few days. Basically, she said that they were concerned about the blood clotting in the ECMO machine. She said if that happened then they would have to change out the machine which is never good. That usually means a step back in a baby's healing process. If they are able to get through the weekend without having to do this, then they are going to do a trial off of ECMO on Monday morning. He will still have support of ECMO if needed but they are going to try him with just the ventilator to see how he responds. So, that will be the big test...please continue to pray for him...that he stays strong and keeps fighting.

We also took a few pictures today and wanted to share...

Here's a couple pictures of Vincent with his daddy :)

I just thought I'd share the view from our room in the hospital...it's rare to have this nice of a day in SF.

Update

I was able to get some much needed rest last night...I was pretty exhausted. The night before I didn't sleep at all. I think it was mostly my nerves that kept me up most of the night but I did start having some contractions as well. Luckily, they were pretty far apart and weren't that intense. So, I was able to wait until morning to have the c-section. At about 9:00 a.m. they took me into the OR and prepared me for surgery. They let Robert come in just before they were about to start. They delivered our baby at about 9:45 a.m. and I had hoped to hear or see him but they took him right away to stabilize him. It was another hour or so before they finished up and I was wheeled into the recovery room. After about an hour in recovery Dr. Lee came in to let us know how the baby was doing. That was when they asked us if we wanted him put on ECMO. He basically said if we didn't have him put on ECMO, he wouldn't make it through the night. So, obviously, the decision was easy. Robert and I wanted to see him before they put him on ECMO, so they put me in a wheel chair and wheeled me over. We were able to get a quick look before the doctors started the procedure. They said we could stay but I couldn't bear to watch my little guy go through that. I know he was sedated and given pain medication so he wouldn't feel any pain but it was still too much to watch.

Both my parents and Robb's parents came by to visit, as well as Robb's sister. We visited with them for a while and then they went to see the baby. After they came back Robert and I went in to spend some time with him. I was surprised to find out that he had my hair color...I thought for sure his hair would be black like Robert' but it's more of a light brown. He was so precious, just lying there peacefully. We were able to touch him but that was about it. I so wanted to see him move or look into his eyes but he was well sedated and will be for a while.

Robert decided to head home and check on Kaycee (our dog) and head back in the morning. I didn't think I'd be able to sleep but I was just exhausted from the events of the day, so I was out. I woke up early this morning and headed to the ICN to see the baby. I spoke with the doctor there and she said that nothing changed overnight. He's still stable and she said they won't make any changes for a couple days. They want to get him used to the ECMO machine and make sure he's responding OK to it.

Later this morning my brother and best friend came to visit and we took them to see the baby. They said he looked strong, like a fighter. :)

Later Robert and I spent some time going through the names we chose. He was looking at his picture and trying to figure out which name fit him best. I think we're getting close...we just want to choose one that's right for him. :)

I just got back from ICN to say goodnight to my little boy. I just pray that he stays strong and finds a way to beat this horrible defect. You have no idea how bad I just want to hold him in my arms and take him home. So, please continue to pray for him!!

Baby Boy Serna Has Arrived

He was born at around 9:45 this morning and weighed 7 lbs 2 oz. They tried to stabilize him but they weren't happy with the way he was responding to the ventilator alone. We had hoped he wouldn't need to be put on ECMO but they feel it's necessary for him right now. So, now we begin the ECMO roller coaster. The procedure to put him on ECMO was a success and he seems to be responding well to it so far. Only time will tell how he does. So, please continue to pray for him. I'm pretty tired right now, so I'm keeping this update short. I will post more tomorrow when I know more.


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I Guess He Couldn't Wait

Ready or not, here he comes. At 7:00 this evening my water broke and we are now at UCSF waiting to have a c-section. I haven't started contracting yet, so they are going to see if I can wait until moning to have the c-section. They want to make sure they are fully staffed and prepared for him when he arrives. So, hopefully I don't go into active labor before then.

I really want to thank everyone for all the thoughts and prayers! We really appreciate everyone's comments. Please keep baby Serna (I guess we better pick a name soon) in your prayers. I'll keep you updated!


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NST Scare

I had an NST at Kaiser today and Baby Boy Serna gave me a little scare. First of all he was extremely active...which is usually a good thing but when he stopped moving around his heart rate didn't go down as it should. It was staying steady at around 190 (normally his baseline heart rate is anywhere from 130 to 160), so to say the least I was a little concerned. His heart rate stayed this way for about five minutes and then went down a little bit when he started wiggling around again. Then he got the hiccups and the monitor wasn't reading the heart rate very well. When the nurse came in I asked her about the high heart rate and she told me she would show it to the doctor. The doctor was also a little concerned, so I was asked to check into Labor and Delivery to have the heart monitored there for a while. She said they wanted to monitor the baby there so that they are prepared in case anything happens and I need to deliver. So, that statement alone scared the crap out of me. If anything did happen, I can't deliver at Kaiser, I would have to go to UCSF and I made sure to let everyone know that. Anyway, after about 40 minutes of monitoring at Labor and Delivery his heart rate was fine. His baseline was at about 150 with lots of movement. I guess he just likes to keep things interesting. I think he's getting a little restless. Only 6 more days, buddy...hang in there! :)

There's No Turning Him Around

We went in for the ECV procedure today and let me just say that it was NOT fun. There were two doctors, one on each side of me, and they physically tried to turn the baby. Not all of it was painful but when the baby got to a certain position, it hurt pretty bad. The first attempt was successful but he flipped right back to breech position (stubborn little guy). They attempted one more time but they were only able to move him half way...he refused to turn all the way around. So, he's now in the transverse position (horizontal). At that point Dr. Wu felt there had been enough stress on me and the baby, so he decided not to try again and just schedule a c-section. So, unless he decides to come sooner, he's set to arrive on the 21st.

On a side note, I think we're getting closer to choosing a name. We have it narrowed down to about 5 possibilities but I have a feeling we may end up waiting until he arrives before we decide which one is right for him. :)

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