Thank You

We would just like to thank everyone who attended Vincent's memorial service yesterday. We would also like to thank everyone who sent us flowers, cards, emails or comments. We are so blessed to have such a wonderful group of friends, family and co-workers.

We would also like to share a poem that we put on Vincent's memorial programs. We found it online and knew it was the perfect poem to honor Vincent.

God's Garden

God looked around his garden and found an empty place.

He then looked down upon the earth, And saw your tired face.
He put His arms around you, And lifted you to rest.

God's garden must be beautiful, He always takes the best.

He saw the road was getting rough, And the hills were hard to climb,

So He closed your weary eyelids, And whispered, "Peace be thine."
It broke our hearts to lose you, But you didn't go alone,

For part of us went with you, The day God called you home.

Details & Service Information

I feel like I should detail the events that led to Vincent's passing. If not for the followers of this blog then for myself. The previous post seemed so hopeful...I'm just still trying to make sense of everything that happened.

The day before he passed we checked in on him in the morning and his ventilator settings were back up. Evidently, he had some trouble that night and they had to up his settings because he kept de-satting. His ventilator settings were back to the maximum and his O2 was back to 96. His sats were in the 80s but his blood pressure was still very low. They did start weaning him off the Pavulon and we were able to see him open his eyes for the first time and what beautiful eyes they were. Looking back now, I wonder if when he was looking at us if he was trying to tell us something. Maybe he was trying to say hello or perhaps goodbye. I don't know but I remember feeling so sorry for him....for everything he was going through.

We decided to take a break and take a walk through Golden Gate Park. It was a beautiful day and it was nice to spend some time together and just take a break from everything. When we got back that evening, his sats had dropped into the 70s. The doctor on that evening came up to us and basically told us that he didn't think Vincent was going to make it through the night. He said that every time they tried to wean him off of anything his sats would drop. They started giving him the Pavulon again which seemed to help his sats but the doctor said that wasn't a long term solution.

We pretty much lost it...all the hope we had was gone. We felt powerless. We stayed with him the whole night just staring as his sats...watching them go up and down...it was terrifying. We asked if they had a room at the hospital we could use to rest for a little bit and they were able to accommodate us with one. We layed down for a few hours and I remember dreaming that we were preparing to take him home. We were getting the car seat ready and driving to the hospital. I remember feeling excited and relieved that he was finally coming home with us.

It was at about 6:00 a.m. when we heard a knock on the door. I'll never forget that moment...we woke up and we just knew. We went to see Vincent and they had him on the hand ventilator and his sats were dropping into the 60s. As much as we didn't want him to...he was letting go. They put us in a room and brought Vincent in and we were able to hold him for the first and last time.

It's been over a week now and we're still trying to make sense of everything. Everyone has been very supportive and we thank you all for that. We have a great support group of friends, family and co-workers as well as our online followers. The doctors and nurses at UCSF were phenomenal, especially nurses Sue, Jeanine, Robin and Crista. I don't know how they do what they do but they are extraordinary people. Our genetic counselor, Katherine Button and Dr. Kobori at Kaiser have also been a great support through this whole thing.

We are planning a memorial service for Vincent next Saturday. Anyone is welcome to attend...the details are as follows:

Saturday, October 17th, 12pm noon

Saint Francis of Assisi
5111 San Felipe Road
San Jose, CA 95135
https://exchange.cps-co.com/exchweb/bin/redir.asp?URL=http://www.stfrancisofassisi.com/
408.223.1562

We Love You Vincent

This is one post I hoped I'd never have to write. Vincent lost his battle with CDH this morning. The doctors did all they could but, unfortunately, his heart and lungs couldn't support his will to live.

He passed away peacefully in our arms. We know he's with God now and he is at peace. We said goodbye to him but he will forever be in our thoughts and in our hearts.

We love you Vincent.

"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.


-- Post From My iPhone

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..


-- Post From My iPhone

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.


-- Post From My iPhone

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.


-- Post From My iPhone

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.


-- Post From My iPhone

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!


-- Post From My iPhone

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. :)

-- Post From My iPhone

NST

I had my NST today. First they did a quick ultrasound to check the fluid and the baby's position. Yes, he's still breech! He's a stubborn little guy...let's just hope the doctors will convince him to flip at my ECV next week. I was also able to see him take practice breaths which was very comforting...he's getting ready for his journey into the real world :-) He was a little quiet during the first few minutes of the NST so I tried sucking on a blowpop (thanks for the tip Liz!) and it seemed to wake him right up. He was fine after that and the test went great..there was a good heart rate and no contractions.

I met briefly with Dr. Wu and he went over the ECV procedure next week and then what the plan is after that. If I don't end up having an emergency c-section next week then they will either induce or do a planned c-section the week of the 20th. So, we'll see. I'm just really happy I made it this far...I'll be 37 weeks by next Monday, which will make me full term. :-)


-- Post From My iPhone

Just Heartbroken

I am just heartbroken. Ever since I started following these blogs, three have lost their battle with CDH, Angels Evie, Jackson and Ireland Rose. I can't imagine what the families are going through right now but my heart goes out to each and every one of them. I know I need to stay strong and keep positive thoughts for my little boy but I'm terrified. I just pray that Maximus, who is in the hospital right now fighting his battle, stays strong and continues to improve.

ECV it is!

Dr. Wu called me yesterday during my NST at Kaiser...which went well by the way. He was very active and his heart rate was just what it should be...and I didn't have any contractions. :)

Anyway, Dr. Wu said he brought up my options during their meeting and they didn't think I should try the Moxibustion. They felt it was risky because they really don't know enough about it. So, they thought the best option was to try the ECV and go from there. If anything goes wrong during the procedure, they will be prepared to do an emergency c-section. If it doesn't work and the baby doesn't want to move then they will schedule a c-section at around 39 weeks. If it does work (which is about 58% of the time), then they will just wait for me to go into labor. They scheduled me to go in on Sept. 9th for the procedure and I'm a little nervous about the whole thing. I've heard that it can be somewhat painful. I am just hoping it works and it's nice and quick!

Turn, Baby, Turn!

I had an NST on Wednesday and Friday of last week and both were good. I had one contraction during the test on Friday but it was very small. The nurse wasn't concerned at all.

Yesterday I headed up to UCSF for my weekly appointments. First, I had the ultrasound. Sometimes I hate getting ultrasounds...they always make me nervous. The technicians seem to have this look on their face, probably a look of concentration but I mistake it for a look of concern. I'm always afraid they see something wrong but I know I can't ask them because they're not doctors and can't tell me anything anyway. So, I lay there for 45 minutes just watching them do their work and pray that there's no bad news forthcoming. At any rate, I guess it was just a look of concentration because there was nothing new to report from the ultrasound. I did, however, find out that the baby is now 5lbs, 2 oz. which, I was told, is normal for his age.

I had some time after my appointment, so I grabbed a quick lunch and then headed to OB for my NST. The baby seemed to be asleep for the first 5 minutes of the NST, which didn‘t make the nurses very happy. They woke him up by putting a loud buzzer (which they call a baby alarm) on my tummy and set it off. He jumped when he heard the noise, which made me jump. He moved a little bit after that but then settled back down. The nurses then gave me chocolate, which they claim stimulates movement but that just gave him the hiccups. The nurses did seem a little concerned, as did I. With the membrane separation, there's a chance the umbilical cord can get pinched and that's why they want me to get NST's so often. They showed the results to Dr. Wu and he said there was enough movement and his heart rate was fine but I should continue to get the NSTs three times a week as a precaution.

After my NST I met with Dr. Wu. He said that the baby is developing normally and he looks good. He was concerned that the baby is still breech. Because of the membrane separation, my fluids are a little low and the baby is running out of room to turn. He gave me three options to consider. The first is to just schedule a C-section, probably at 39 weeks. The second is to try to turn the baby by trying an external cephalic version (ECV), which involves manually turning the baby around externally. He said there's a risk that this might break my water (again because of the membrane separation) and they'd have to do an emergency c-section anyway. There's also a risk that it might lower the baby's heart rate and, again, they'd have to do an emergency c-section. If it is successful, then they would monitor me for some time and then send me home and wait for me to go into labor. The third option is to try Moxibustion – an acupuncture technique using the herb moxa. Moxibustion is a traditional Chinese technique used to encourage a breech baby to turn around. Moxa sticks or cones are burnt close to the skin at the acupuncture points on top of the fifth toes. The heat from burning moxa sticks can stimulate the baby's movements and encourage it to turn. It sounds weird but he said it's been known to work about 70% of the time. He said he will bring it up during their weekly meeting this morning to get everyone else’s opinion and give me a call later today to let me know what they thought.

34 Week Ultrasound

We went to UCSF for an ultrasound today and the LHR has gone back up to 1.2. So, that's good news. After the ultrasound, we met with Dr. Rand. He said they are concerned because the ultrasound indicated that I am at high risk for preterm labor. He said I have CMS (Chorioamniotic Membrane Separation) which isn't uncommon after fetal surgery but puts me at high risk for preterm labor. I will need to go in to UCSF each Monday for an ultrasound and an NST and to Kaiser every Wednesday and Friday for an NST. They still plan to deliver somewhere between 37 and 38 weeks but he will let me know by next Monday what they decide. I've been put on modified bed rest until delivery, which means I have to stop working for the duration of the pregnancy. We didn't plan for me to take this much time off prior to the baby being born but I guess we'll find a way to make it work. Robert should be able to take some time off after the baby's born, so that should help. These next few weeks are going to be critical so please keep those positive thoughts coming! Thank you for all your prayers and support...we really do appreciate it! :)

Glad to be Back Home!

Well, I'm glad to be back home. I was discharged yesterday afternoon and am now back home resting. It was so nice to get a good night's sleep! In the hospital I was continually getting the NST (non-stress test) which monitors the baby's heart rate and my contractions. You can't really change positions with the monitors on because they'll move and have to be readjusted to find the baby's heart rate again. That along with continual visits from nurses and doctors, sleep just wasn't easy. I appreciate the great care but it is really nice to be able to sleep in my own bed.

The night following the procedure I did have some regular contractions but they weren't too concerned because I wasn't able to feel them. They also gave me regular doses of Nifedipine which is used to stop/prevent contractions.

I had an ultrasound yesterday morning and Dr. Lee called me with the results. He told me the LHR would go down after the balloon was removed and indeed it had. It's now at 0.9. He said they were happy with the results and that everything went well, but I wasn't as pleased with the news. I was hoping for a higher number or at least the same. At any rate, it is higher than when we started this whole journey. So, we've done everything we can do to give him the best chance possible. It's up to him now. All we can do is hope that I go full term and that he's a strong little guy. Both Robert and I were preemies and we fought to stay alive those first few weeks of life...I just hope that our little boy inherits that same will to live.

The Balloon is Out

The balloon is out, or at least it's not there anymore. The procedure was quick but they weren't able to locate the balloon. The doctor thinks it may have gotten dislodged in the last week or so because they weren't able to locate it on my last ultrasound. Either way, he says it's fine. They do know that the lungs have grown and the important thing is that the balloon is no longer blocking his airway. He can now be delivered normally without an EXIT procedure. So, now we just wait and hope he stays where he is as long as possible.


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All Set for Monday

I had the fetal ECHO today. They said the pulmonary artery has grown which can be an indication lung growth. :) They weren't able to tell much more from the ECHO but felt that everything is fine with the baby's heart because the heart rate was good and the ECHO I had earlier in my pregnancy was normal. I got my second shot of Betamethisone and they monitored the baby's heart rate and my contractions for while. Evidently, I had a couple contractions which I didn't feel at all. The nurse said this was normal for 32 weeks and they were just Braxton Hicks contractions. The doctor came to visit me for a few minutes to answer some of my questions. He said everything looks good and they're all ready for me on Monday. I'm just hoping it goes as smoothly as it did for the first procedure. We will post an update after the operation & let everyone know how it went.



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Busy Day of Appointments

It was a busy day of appointments at UCSF. First I had an ultrasound, which took longer than expected. Unfortunately, after that appointment, I didn't have any time to talk with the doctors to discuss the results. The nurse did email me the LHR, which hasn't changed since our last visit. They again calculated a range of 1.2 to 1.4. After the ultrasound, I received a shot of Betamethasone, which is used to stimulate fetal lung maturation in the off chance they'll need to deliver when I have my second surgery on Monday. Then I had to drive across town to get an MRI (in San Francisco rush hour, getting across town can take a while). I was a little late but luckily, they were still able to squeeze me in. Thankfully, the baby was very cooperative and didn't move too much during the procedure. The technician said they were able to get all the images they need and I should expect the results by tomorrow. Tomorrow I will also get a second shot of Betamethasone and a Fetal ECHO to check the baby's heart.

LHR Update

Just a quick note...I contacted the doctor today and he said the LHR from Monday was calculated at 1.2 to 1.4. So, not much of a change from last time but still good news. My next appointment is on August 5th. This will be the last ultrasound before the surgery to remove the balloon on the 10th.

I Guess No News is Good News

I am now 31 weeks and we had another ultrasound at UCSF. They took measurements, however the radiologist was unable to calculate the LHR today. They will have another doctor review the pictures and calculate it tomorrow. Dr. Wu, our Perinatologist, said everything else looks good. He said that because my fluid levels are normal and I haven't had any contractions, we're in good shape. He said that everything is going as it should and we're still on track with the balloon removal on August 10th. Following that surgery, I will be put on bed rest again for at least a week. My pregnancy will then be monitored weekly at Kaiser and, if all goes well, I will deliver on September 14th at UCSF. So, overall, nothing new to report but we'll continuing to keep everyone updated on Baby Boy Serna's progress. Thanks again for all your support! :)

Good News from Our Second Follow Up Visit

We had our second follow up visit today and it looks like everything is going as it should. My pregnancy is progressing normally with no problems. They measured the LHR and it has doubled in size. It is now at 1.2! The doctor had originally said he hoped that by the end of the treatment that it would be up to 1.2, so that is great news so far! Our next appointment is a week from Monday and we're hoping for even more growth. Keep up the positive thoughts and prayers...they're working!! :)

Our first follow up visit

We had our first follow up visit after the surgery at UCSF today. They did an ultrasound and said everything looks good. It's too early to see any lung growth but they did see fluid accumulating which is exactly what's supposed to happen. The amniotic fluid level is normal which means there is no concern for preterm labor at this point and I can be taken off of bed rest. :-) Our next appointment is next Friday where we will have another ultrasound to check the lung growth.

The doctor mentioned that I am somewhat of a celebrity around there because, in his words, "the procedure went exceptionally well" :-)

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Going home

I'll be going home today. All went well overnight. There was no pain & no contractions. The baby is back to his active self, moving around & kicking.

The surgery went really well. The surgeons were able to move the baby to the ideal position for the surgery & the procedure itself only took 15 minutes. They seemed very happy with the results. It is such an amazing team of surgeons, doctors & nurses here. I feel very lucky to be in such good care.

I will be going in for ultrasounds weekly to monitor the baby's progress. Only time will tell if this procedure will help. We're just praying that this will allow his lungs to develop enough so that he can breath on his own after delivery. There is also a small chance of preterm labor which we hope won't happen. So, please continue to send us your good thoughts and prayers!


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"it couldn't have gone better"

Well, we're not out of the woods yet, but the surgeon said it could not have gone better. Chelsea & the baby are resting and they should be coming home tomorrow. Thank you for all your prayers and good thoughts, we really appreciate it.


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The surgery is scheduled

I just received confirmation on the date of the surgery. My first surgery is set for July 2nd where they will insert the balloon and my second surgery for August 10th where they will extract it.

How it began...

It all began at our first trimester screening at 10 weeks gestation. The ultrasound revealed something unexpected. There was fluid behind the baby's neck known as Cystic Hygroma. The Perinatologist explained that this can sometimes be an indication of a genetic abnormality and suggested we get a CVS test. So, at 13 weeks we went in for my CVS ultrasound and were happy to hear that the Cystic Hygroma had resolved itself. Unfortunately, they found something much worse, a Congenital Diaphragmatic Hernia (CDH). He explained to us what CDH was and told us that because it was detected so early in the pregnancy, the prognosis was very poor. Following the procedure, we spoke with a genetics counselor who explained in detail what CDH was and what our options were. She suggested we wait for the results of the CVS test and go from there. So, we waited. After a week, the results were in. We were happy to here that the chromosomes were normal. We went in for another ultrasound at about 15 weeks to check for any other abnormalities. They didn't find any other abnormalities and determined that the CDH was isolated. Again we spoke with our counselor and she told us about an experimental procedure known as Tracheal Occlusion that is being done at UCSF's Fetal Treatment Center. We decided that's what we wanted to do. So, at 19 weeks we went to UCSF for an ultrasound to see if our case was severe enough to qualify for the surgery and it was. The stomach, intestines and part of the liver had herniated into the chest cavity and the LHR (Lung Head Ratio) was a low .6. Unfortunately, the amniotic fluid was also a little low. They said if the fluid dropped any lower, they would not be able perform the surgery. So, the waiting game continued. We were to have another ultrasound at 22 weeks to check the fluid. Luckily, the fluid increased to a normal range and they agreed to do the surgery. Now here we are at 24 weeks and we just returned from another appointment at UCSF. We toured the intensive care nursery and met with the pediatric surgeon. The surgery is scheduled for early July and all we can do now is wait and pray for a miracle.