Memorial Service

We will be having a memorial service for Andrew on Monday, November 2nd at 6:00 in the afternoon at the Hall-Wynne Funeral Home in Durham, North Carolina.

In lieu of flowers, we would request donations to either the The Association of Congenital Diaphragmatic Hernia Research, Awareness, and Support (CHERUBS) organization or the The Parker Reese Foundation

Angels

Andrew Weston Hobbs passed away today at 5:35 pm. His long battle with CDH was cut short by a small bowel obstruction that they were unable to repair.

“There's no tragedy in life like the death of a child. Things never get back to the way they were.” - Dwight D. Eisenhower

Long Winding Road

Today has been a hard day. Andrew's trial off ECMO did not go nearly as well as last Thursday and no one seems to understand why. He is able to oxygenate fine, the problem seems to be with ventilation and getting rid of carbon dioxide. To look at his monitors while clamped, you wouldn't guess there was any problem, but then when the blood gases come back it is without question that he is back to needing ECMO to stay alive rather than just buying us more time to use lower ventilator settings. With that said, time on ECMO should only make your lungs better or the same, not worse and we are very fortunate that we did not come off ECMO while things looked very promising last Thursday, his right lung would not have been enough to support him through whatever is going on in his body presently.

Over the last several days, Andrew's pulmonary hypertension issues seem to be worse and his belly seems to be very distended and tight even though his drain is working and putting out quite a bit of fluid. He has vomited around his nasogastric (ng) tube about once a shift for the last 2-3 days- they did pull his ng tube back some this morning after looking at the x-ray results. They are consulting the pediatric general surgeon to see is he has any other advice or input.

Andrew is starting to approach the time frame on ECMO where more complications can develop and the doctors are anxious to try and get him off if at all possible. For that reason, we will be trialing off again tomorrow and possibly for several days in a row hoping to avoid some of the complications from long term ECMO use. These days are completely exhausting and draining for all of us. We hope that you all understand that because this has been so trying, we will probably not be posting as often given that no changes arise. Please know that if there are any major changes, we will definitely be letting everyone know. Thanks so much for the support and the continued prayers for Andrew!

It's the same old story...

It's the same old story; Same old song and dance -- Aerosmith, 1974 "Same Old Song and Dance"

Today was the fourth attempt to come off ECMO. Again today his blood pressure was good but we were on high ventilator settings. Since this would still not allow for room to move up should he need it, we have remained on ECMO. I really wish there was more to report...

Andrew was given a half dose of surfactant this evening and his hemofilter has been set to pull some fluid off of him. It looks like we will try again on Monday.

It takes both rain and sunshine to make a Rainbow

“Necessity never made a good bargain” -- Benjamin Franklin

Today has been a very good day! We trialed off ECMO for the third time today. Andrew's blood gas results looked great for the full three hours that he was off the pump. His blood pressure was a little low but all in all he looked great. We were even sent out of his room so that they could decannulate and take him off the ECMO. In the end, it was decided that a couple more days on the pump could allow for lower ventilator settings (currently maxed out) giving us some room to move once they take the ECMO away. It is amazing knowing for the first time that Andrew could make it without the device that saved his life just three short weeks ago. We are now using the ECMO to allow for improvement more than needing it to stay alive. The next trial is slated for Saturday.

Because they decided to leave Andrew on ECMO for a couple more days, they decided to completely redo the sutures holding the cannulas in place. The leaks around them that have been plaguing us for the last few days seemed to have stopped.

Andrew is still making urine and his kidney numbers are starting to trend down though there is not much of a change that can be seen yet. We hope tomorrow morning we will see some real improvement.

Andrew's stitches from his chest and abdominal incisions were also removed today as well as the other large pleural chest tube. He did need a smaller tube to replace the bigger one but that is still a huge improvement.

All of these changes this afternoon allowed for Andrew to be moved a little more easily and his team took the opportunity to clean him up. Below is a picture following his bath. During the bath it appeared that the new gel mattress his nurse Amy picked up from the intensive care nursery also seemed to help the red places on his back. We don't want them to form into pressure sores.

Today has been a GREAT day and a rainbow among the dark clouds...

Happy Anniversary

We apologize for not updating the blog in a couple of days. We are so grateful for all the support we receive from each one of you and hope that you all understand how tiring this whole process is for us to go through.

While I know you are all anxiously waiting to hear the latest on Andrew's progress. I first have to take time to tell my incredible husband thank you and happy anniversary. It was five years ago today that I married my best friend. The vows we took on that day are promises that I am so grateful for today: in good times or bad, in sickness or health, for better or worse. We had no idea five years ago how much we would be going through exactly five years later and how those promises would really be tested. These latest trials have brought us even closer together. While I would not wish the latest experiences we have had on even our worst enemy- I am forever grateful that I have my best friend by my side and want him to know how much he is appreciated and loved and admired! Happy Anniversary!

Now for the latest updates on Andrew...

Andrew is making more urine now although the lab values measuring his kidney function have not come down yet. The nephrologist believes that his making urine now is a good sign and that hopefully the still elevated numbers we are seeing are the results from what was done to him over the weekend and that those numbers will eventually decline now that we are giving him the fluid he needs and actually giving his kidneys a reason to function.

We attempted to trial off ECMO again yesterday. It was the smoothest trial off I have seen and the staff did a fantastic job! Unfortunately, Andrew does not have enough lung tissue yet to be able to oxygenate his own body. His blood pressure and heart rate looked great and his pulmonary hypertension was not too much of an issue. His monitor did not look bad being clamped for 1 1/2 hours, but his arterial blood gases were more on the devastating side. He does have more of a pleural effusion on the left side that they will most likely drain off today and they will also try another dose of surfactant and hope to trial off again tomorrow. If he does not successfully trial off tomorrow, then the plan is to switch back to VV ECMO (lung bypass rather than lung/heart bypass) which has less risk of complications. He does have two clots on the arterial side of his circuit now which is very scary- they are watching them closely. He is also bleeding from his ECMO catheter insertion site and they will be addressing this as well today.

I knew this journey was going to be difficult, but I truly had no idea it would be this difficult. My prayers have become more like begging and pleading that he will be able to survive this. I thought that by this point, the doctors would be having "the talk" with us, but they have not. In fact, they said yesterday that they were encouraged with his progress and hope that his lungs just need some more time. Andrew is writing the books on how this is to be done since this is not the usual CDH pathway due to his heart defect as well- the good news is that his heart is doing really well now!

Thanks for all the support you have given us! Also, a special thanks to all my co-workers at the ASC for the incredible gift bag filled with snacks and gift cards for meals, for our great neighbors who left a gift basket at our house yesterday filled with yummy Southern Season treats and a much needed coffee gift card, to the Cherubs Organization for the totebag filled with really thoughtful and much needed PICU survival items, to Brendan and Cody for continuing to mow our lawn, Dr. Ames for getting iv access for us when there was none to be found, and to Kathy for the gifts and for giving us all the many chocolates to be able to give to all the wonderful staff taking care of Andrew!


Need to go get ready to see my sweet baby boy this morning. Hope you all have a good day!

Fluid Rollercoaster or Waterslide?

This post has been updated at the bottom

There are three kinds of men. The one that learns by reading. The few who learn by observation. The rest of them have to pee on the electric fence for themselves. -- Will Rogers

Today I have felt like each of the men described in the quote above. In our last post we mentioned the desire to get more fluid out of Andrew and dry him out. We have read as much as we can put our hands on and know this is the right thing to do. After observing his lack of progress and eventual transition to renal failure, we became more convinced than ever that the only fluid we were moving was that in his blood. We started requesting that the fluid they were removing from his ECMO circuit (hemofiltering) and the diuretic drugs be stopped. After an entire night of asking and begging that they stop trying to dry him out, he looked horrible. His eyes were so sunken that the lids would not close on their own when he slept and we had to put in eye drops. His blood chemistry was also starting to look bad as were the numbers that tell you how his kidneys are doing. After a few more hours, I lost my ability to control myself. If you took the other issues off the table and looked only at his fluid levels, kidney failure is what most people would expect. At the beginning of the last trial off ECMO the attending stated we should be "looking at the patient and not the numbers". After an entire night of beating the fellow to death asking her to end this, that same attending had not been there to look at the patient. Needless to say, I said MANY mean things that I should not have... I should feel bad about this but it is how I felt and I was tired of being ignored. So, ten to twelve hours later, the team rounded and decided to stop the diuretics but continue the hemofiltering but at a lower rate. This was a good, albeit late, first step but at that point we would take what we could get.

A consult with the pediatric nephrologist was requested along with a renal echo to look for clots in the kidneys. The nephrologist on call was Dr. Wigfall. I can not begin to explain the relief I felt when I saw him enter the room. This is a man that is very active in the Medical School and I have had a little contact the with over the years. His attention to detail is exactly what we needed to solve our dehydration induced renal failure. His conclusion is that we were too aggressive with the hemofiltering and probably created a situation where the kidneys were not working because there was nothing for them to do with the current lack of vascular fluid. This was great news because shortly after this, hemofiltering from the ECMO machine was stopped and some fluid was given to replace the huge vascular loss. It took several hours for the changes in Andrew's appearance to return to their current almost "normal" state.

Andrew also developed some oozing from his ECMO cannulas. The team made several attempts to control the bleeding but ultimately had to call in the cardiothoracic surgery fellow to do some stitches. This seemed to work well, for the few minutes we were still there anyway.

The really GREAT news is that we are just getting home and Andrew is starting to pee again. Up to this point he has only put out 3 cc's of urine all day. When we left the hospital at a little after 11pm, he had produced almost 22 cc's. He is still relatively inactive and looks like he has no energy left at all but we are excited about the small amount of urine we see now.

The plan for tonight/ tomorrow is to start weaning him down on the ECMO flows. They are planning a VERY slow wean so I feel much better about this than any of the other trials. I have to wonder if it would not be better for him to be more stable...

The other news we have to report is that Harley (our roommate) passed away in her mothers arms this afternoon. As she was unable to get a heart for transplant, it does remind me of why I am an organ donor.

EDIT: Since I posted this, five hours has passed. In that time they did try to cut the flows from Andrew's ECMO which also lowered his urine output. They have returned to full flow again but his kidney chemistry numbers are looking worse. Nephrology has been consulted again. I am also excited about a new attending in the PCICU since all his renal issues started at the same time the last attending took over and started pulling fluid off.

Hopefully Just A Bump In The Road

Today has been a troubling and frustrating day for us. Andrew seems comfortable which is good. He still has his awake periods where he is very alert and focuses on us. Gene mentioned that after the trial off ECMO did not go well yesterday, the plan would be to take off more fluid. His doctor wants him to have 500 cc (or ml) more fluid coming out than going in during a 24 hour period in hopes that getting the extra fluid to go away will make it easier for Andrew to breathe and help him to come off ECMO. He has always responded very well to the medication they give to increase his urine output. Starting last night and continuing into today, Andrew's blood pressure has remained fairly low despite starting him on epinephrine and his urine output has decreased and is no longer responding to the medication. In fact, his urine output is usually around 16-20 cc/hr- today he has only had 11cc out total for the last 9 hours. Rather than having more fluid out than in as hoped, he is still positive by 6 cc.

Needless to say, Gene and I are devastated, but are trying to remain positive. His doctors and nurses are just as perplexed as we are. Hopefully, this is just a bump in the road that will resolve sooner rather than later. Thanks for all the prayers and support.

Dazed and Confused... Wait, what day is it?

Sorry to be posting this so late and after such a long delay. The last two weeks have been two of the most restless of my life. A major contributor to this exhaustion has been getting up every three hours to clean supplies and freeze milk after Becky pumps. I guess we have had some of the true "new parent" experience after all.

Yesterday, the mediastinal chest tube was clogged and required suctioning to clean it out. That seemed to help it some but it started to leak through the dressing. It was a relatively quiet day for Andrew's roommate Harley as well though today was a much harder day for her family. Please remember them in your prayers as well. (Harley's blog)

Today started with a phone call from Andrew's nurse at 07:30. The news was that they were going to try him off ECMO again. He seemed to be retaining more fluid following the ECMO circuit change which is normal so we did not think they would try it this soon. By the time we walked into the PCICU, the team was assembled and waiting on blood to arrive in case they needed it. This trial was MUCH faster paced than the last. Ultimately, Andrew decided this was not his day to come off. He had a similar reaction to the last time but it was a much faster decline in his blood pressure. I talked to Dr. Jaggers an hour later and he felt Andrew would be better served with a slow drop in the ECMO flows. They want to pull off a bunch more fluid before the next trial so we will see how his kidney's hold up to more work. I am not sure when they will try again but I am happy with the plan to take a day or two when they do.

While I was not too surprised that Andrew did not come off today, the afternoon "trial" confused me some. When the ECMO team was cutting the flows on his machine this morning, they found a problem in the equipment that would not allow them to get all the way down to a quarter flow. The team quickly responded by opening more of the circuit which did reduce the flow nicely. Finding a problem in the machine resulted in a call to clinical engineering. Their team showed up with a replacement part around 3:00 this afternoon. Replacing this part required clamping Andrew off the ECMO again for a few minutes. Andrew did great with this five minute break. I am confused and not really sure what to make of his ability to hold steady so much better with the equipment change than he did earlier in the day.

The best news of the day followed shortly after the dressing over the mediastinal chest tube was soaked through and required changing. It turns out that it had a small tear and was going to require some attention. Dr. Jaggers returned to take a look and decided to pull the tube. I can't begin to tell you how nice it is to see something come out.

Well, I better wrap this up since it is time to pump again...

What Doesn't Kill Us Makes Us Stronger --Friedrich Nietzsche

So today was a long day, but at the end of this long day, the three of us are still alive and for that we are grateful.

When I called at 3:30 this morning to check on Andrew, we were told that his chest tube drainage had picked up significantly to over 10cc/kg/hr. That was not something I felt comfortable keeping tabs on from home, so Gene and I made our way into the PCICU. A call was placed to Andrew's surgeon and his heparin was stopped. The possibility of re-exploring his chest at the bedside was mentioned as a possibility to us. This terrified me and made me realize how this whole journey is very much out of our control.

The good news is that stopping the heparin also dramatically slowed down the bleeding and we were able to avoid additional surgery!

I seem to have this love hate relationship with ECMO. This machine has kept my son alive since the day he was born, allowing his lungs to have the needed rest to heal and grow. Patient's that are on ECMO are given heparin which is a blood thinner used to prevent blood clots from forming in the circuit and then passed on to the patient. Andrew seems to bleed too much out of one chest tube in particular and holding the heparin for a while is what seems to slow down this bleeding. Then the fear changes from bleeding too much to developing a blood clot. While I love this machine for keeping my son alive, it has also been the cause of great anxiety. A necessary evil.

With that said, what does not kill us makes us stronger. Each day that Andrew is on ECMO is one more day his lungs are getting stronger.

I heard from many CDH moms that said it took 4-5 tries to successfully come off ECMO. Andrew's medical staff was very much encouraged by his trial off the other day and so we make time our friend and wait for the day that Andrew is strong enough to make his way through life without these necessary evils!

Swing, and a miss...

If at first you don't succeed, try, try again. -- W. C. Fields

Andrew is back on ECMO, but lasted one hour off. His pulmonary pressures increased along with his CO2. They did a cardiac echo which showed good right heart function. Dr. Jaggers said it looks encouraging for another trial off in a couple of days.

For those who were concerned, his fauxhawk was replaced last night. Jen does a great job keeping up his "rock star" status.

Below is a picture to give you a better idea of how many people are here for an ECMO trial.

ECMO, surfactant, and lung growth, oh my...

We grow because we struggle, we learn and overcome. --Allen, R. C.

Today there is really not that much to report. Andrew spent the day growing more lung tissue. He was given more surfactant today to help the lung tissue he does have expand more.

Since the plan for tomorrow is to try and wean Andrew from ECMO, I thought it might be worth showing everyone the progress he has made.

Day Zero -- Shortly after birth


This first chest film shows a little lung tissue on the right side (left side of the picture) at the base of the lung (darker spot). You can also see the heart was shifted to the right.

Day Eleven -- Today, just after another surfactant dose


The second film shows the lung looking quite a bit better with the heart shifted left. I still don't see any evidence of a left lung and we may not. Also obvious in this second image is the number of tubes and wires Becky talked about in her previous post.

Thanks again for all the support!

Coming Out Of The Darkness

It's so hard to not pick him up and hold him when he looks so cute! I'm not biased or anything! Thank God for another great night and a good day so far!

The Good, The Bad And The Truly Frustrating!

We started off yesterday with some pretty bad pulmonary hypertension. This is pretty typical for CDH babies but one of the most frustrating aspects from a parent's point of view. Andrew was placed on minimal stimulation which means we could briefly touch him or give him a quick kiss when we entered or left the room and that was it. He had Bose headphones placed over his ears to decrease the amount of noise stimulation as well. Any parent would just want to hold their baby and try to make it all better. I know from a medical standpoint, the decreased stimulation is what he needs, but it doesn't make it any easier. Watching and waiting is all that can help.

Andrew also was having trouble keeping up his oxygen levels in his blood. He had a lot of fluid build up (pleural effusion) in his right chest that was preventing his right lung (his good lung) from expanding. His surgeon placed another tube in his chest to drain off this fluid. The scary part about this is patients are on a lot of blood thinners while on ECMO which can make this very bloody. His surgeon wanted to stop the blood thinners for several hours before placing this tube which is also risky because he then has a greater chance of developing a blood clot. Thank God we have a fantastic surgeon and there were no problems!

Andrew has two incisions (one sternal or chest and one laparotomy or abdominal) three chest tubes, one pulmonary artery catheter, one umbilical arterial line, one peripheral i.v., one tube to drain fluid from his abdomen, the ECMO tubes, the breathing tube, the nasogastric tube that drains stomach contents and a tube to drain urine. He is being kept comfortable with Morphine and Versed and is still opening his eyes but does not appear to be in distress or discomfort.

I include some of these details because I want other parents who are facing these obstacles to not lose hope! This journey is not for the weak. It is a long, painful, uncertain and scary road, but worth every part of it when we get to bring Andrew home with us!

Besides the frustration of pulmonary hypertension, another aspect equally painful is going home for the first time without your baby. That is what I did yesterday. I cried as I think any mother would, but then I picked myself back up and actually pumped every 3 hours while sitting in the glider in Andrew's nursery. I found it reassuring and hopeful and it felt like the right thing to do. I know we will bring him home, it is just a matter of time. I was also able to help with one of his dressing changes and it felt amazing to be able to do something for him.

Now for the good! Andrew had a fantastic night last night! His oxygen level in his blood which was only 60's the day before is now over 200, his pulmonary hypertension was at a minimal and they actually weaned some of his vent settings. His chest x-ray looked better this morning- his right lung filled almost the entire side of his right chest, there were no changes with his left lung. The drainage out of his tubes has slowed down and his urine output has picked up! Pumping is going very well- in fact every time we have been completely stressed out by a situation (hearing that he may not qualify for the heart surgery, when they took him to have open heart surgery, when they found the blood clot in his heart that spontaneously disappeared) I have gone immediately to pump over 4 ounces in one sitting! I am hoping that Andrew has inherited my ability to rise to the occasion when under stress and so far it seems that he has! Maybe this has been God's reassuring promise to me that when things look bleak, he knows the final outcome and is still preparing my body for that! The best news yet is that if he keeps up this pace, they will trial him off ECMO on Tuesday!!!!!!! Keep the prayers coming- they are working!

We want to thank you all for the tremendous support you have been for us! We want to thank all the medical staff that has taken such great care of Andrew!!!! We wouldn't be here without each and every one of you and will be forever greatful for your loving and impeccable care!

Quick update

Today started out on a worse note, but ended up on a much better note!
Gene and I are completely exhausted and are going to try and get some
much needed sleep tonight. We will post more details tomorrow. Thanks
for all the support and prayers.

Time...

Time is the longest distance between two places. ~ Tennessee Williams

Today has been marked by time. I feel like we are slaves to time. When we arrived at the PCICU this morning, Andrew looked good. The oxygen levels measured in his blood were great (>200) and the heart looked to have shifted more midline. The right lung also looked a little more open on the chest x-ray.

A little after noon, the light red fluid coming from his Tenckhoff catheter was replaced by a very dark red fluid. It was a fast leak and he showed no other signs something was going on. I know it only leaked for a few minutes but the volume and seeing it start spontaneously with no apparent cause made this feel like an eternity. An x-ray and ultrasound were ordered. On ultrasound, it was nice that there was some gastric motility. Ultimately, I think what I saw was the release of a pocket of old blood from the day before. That was the minute that seemed to be an eternity.

Tonight, Andrew seems to be fighting quite a bit of pulmonary hypertension. This has been here all along but seems to have increased some of late. He has been on nitric oxide since early on in his care. The change to Venoarterial ECMO is already paying off since the ECMO is taking a bunch of the strain off his heart that would normally be a bigger problem resulting from the pulmonary hypertension. The higher oxygen levels seen first thing this morning were short lived and remain a little on the low side at this time.

The hardest part of this situation is that all we can really do at this point is wait as time goes on.

Two in One

Andrew's day started out by making his way to the operating room around 8:45 a.m. It was quite a transport crew that required security blocking the halls to make room for all of the equipment required to transport our sweet little baby of less than 10 lbs to the operating room. He was wide awake and looking all around when they came to get him. Gene handled this much better than I did. I was in complete mother mode and every bit of medical knowledge I had was out the window. We received frequent updates and were so fortunate to have an incredible team of people who love us and Andrew working on him to save his life. We will be forever grateful for them! He returned to us around 3:30 pm with the same amount of equipment and support.

We knew Andrew was to have his aorta repaired and that if the diaphragmatic hernia looked mild, they would repair it then as well. We did have some surprises in this regard. It turns out that his hernia was so severe that they were not able to repair his aorta unless the hernia was repaired immediately to leave room for the aorta to heal and not cause too much scar tissue. His entire left diaphragm was missing and his spleen, small and large intestines and stomach were up in his chest. His liver was down in his abdomen. The left lung that was visible was very rudimentary and did not appear to have normal vasculature. He did not look at the right lung because the heart was pushed to far over to the right side. The good news is that his aorta was pretty straight forward to repair. He was anticipating a very difficult aortic repair, so we were thrilled to have this in Andrew's favor! They attempted to come off bypass, but his lungs were too underdeveloped so he placed Andrew on Venoarterial ECMO which will be able to bypass his heart as well as lungs should his heart have too much of an insult after surgery. The blood clot found the other day was also absent from the direct examination of the heart.

He has two chest tubes to drain fluid from his chest and a Tenckhoff catheter which will help drain fluid from his intestines and is available for temporary peritoneal dialysis should his kidneys suffer a temporary insult from the surgery. The plan from here is too wait and see how much lung development we can recruit- so that is where people can start their prayers! Please pray for lung development and expansion. People can continue to develop lung tissue until 8 years of age- so it is possible that he can make it through this now that his lungs have room to expand! While he is one of the most severe cases of CDH, his surgeon said he still has hope and that is a wonderful thing for a parent to hear!

Thank you for your continued prayers and support. We anticipate the next several days to be rough and hope to make big progress after that. Andrew, Gene and I all appreciate your encouragement and have been overwhelmed by the care and compassion of those around us!

Going into this with our eyes open...

I had not planned to post again but we are too excited not to. There has been enough fluid removed from the little guy that his eyes are opening when Becky talks to him! (and here he obviously does not like the suction.)

Becky also wanted to make sure that I told everyone that we have changed our primary cardiothoracic surgeon to Dr. Jaggers.

16 hours...

Sorry for the delay in this post. The last 24 hours have been busy with many ups and downs. I am very happy to report that it has been many more ups than downs. First off, Becky is discharged. That comes with it's own unique set of logistical issues but we were able to get her out of the room and in with Andrew for a significant portion of the day.

Fluid balance has been the focus of the care. At many points I was feeling like I was sitting in the simulation center running the Starling's law lab for the medical students. Heart rate goes up, blood pressure is down... get the blood pressure up and the heart rate comes down... He was just sliding up and down the curve and I was not sure if any progress was really being made. He was really swollen (third spacing) and we were told that surgery could not happen until all the extra fluid he was retaining was gone. The goal was to remove 200 ml of fluid to be in a position where he could tolerate the surgery by 2:00 pm today. His team has done an amazing job and like the other goals we have set for him, he has exceeded expectations.

In 16 hours, Andrew will be taken downstairs to the operating room to take care of his coarctation and narrowing of the aorta. They are planning to look at the diaphragm to assess things for the next surgery. This will be a difficult surgery but we have assembled an amazing team to work through this with Andrew. The 08:30 am surgical slot is the first and only slot filled for that room tomorrow so we expect things will get rolling quickly. The repair is planned for four hours and we will update everyone as soon as we know anything.

The Night Owl

So, it's 2 a.m. and we just walked into PICU to find 4 people at his bedside- always makes me a little nervous that something is really wrong. He keeps setting off his ecmo pump- because he keeps waking up from the morphine and versed sedation and moving around too much! Leave it to the anesthetist's kid to be hard to keep down so to speak. He is now on double the amount of sedation that he was on during day shift! I kept telling them that during my NST's while I was pregnant, he was always the most active baby they had seen for the day!

Good news we should be completely off the dopamine by morning and they will probably leave him on a small amount of epinephrine for his coarctation repair. His lungs are responding pretty well to the surfactant they gave him yesterday- allowing his lungs to open up more and ventilate better! He is on 40% oxygen and they are starting to wean down his ventilator settings to get him closer to being on a conventional ventilator!

His ng tube ( goes into his stomach to make sure his stomach is not filled with air so that his lungs will have more room to expand) is not in his stomach and they are not sure what to do because he is on higher doses of heparin to help with his clot which could make adjusting the ng tube very bloody! We don't want that! We'll see what they say about it in rounds. They are thinking of doing the coarctation repair before the cdh repair as he will need ecmo for the recovery period. We have heard from one other cdh family who also had a coarctation diagnosis- this was very encouraging to us! If anyone else out there has a child that was diagnosed with both cdh and coarctation and had a positive outcome- please let us know all the details about it! At Duke, they have not seen a baby with both of these diagnosis at the same time before and are trying to figure out the best order to repair things.

I should be discharged from the hospital in the morning- it doesn't seem right or fair to have to go home without my baby- but I am thanking God that he is still alive and doing better than expected at this point! I can't thank you enough for all the support and prayers! While I have not had time to respond often, I am reading every comment and they are making us feel so encouraged!

Please Pray For Andrew

Please keep the prayers going for Andrew today! They have discovered that he has a blood clot in the right atrium of his heart. They have increased the dose of heparin he is on which will help to stop the clot from growing or new ones from forming. We will wait and see for now what happens and pray to God that it does not get dislodged and go to his lungs which would be fatal. They have seen these clots sometimes disappear on their own and not cause any damage- that is what we want for Andrew!

His cardiothoracic surgeon is very negative and all doom and gloom which Gene and I find very frustrating! We know his heart defect is a big one, but there is still hope. Everyone else thinks that we still have a shot at making it even though it will be an all uphill battle- that is what Gene and I are choosing to believe! Please pray that Andrew will be able to survive this and have a good quality of life!

He has been even more stable today since they repositioned his ecmo catheter and his blood pressure has been stable. His nurse and respiratory therapist who runs his ecmo machine seem to think that was the cause of his frequent lower blood pressures. Hopefully we can continue to lower his epinephrine and dopamine today which have been helping to keep his blood pressure up. The difference in the type of ecmo that Andrew is on compared to what he would have been on is that it does not bypass his heart- so he is having to rely on medication in addition to his own heart working properly. His nurses are fantastic and gave him a bath after the many tests he had done today. He is very puffy from the ecmo which is normal- now that his blood pressure is more stable, they will probably start a medication that will help him to pee some of this extra fluid out of his system.

We love this baby so much and still are holding out every hope that we will bring him home with us one day! Thanks so much for all the encouragement and prayers- they mean so much to us right now! - Becky

Quick Update

Andrew has done really well over the last 24 hours and even surprised the doctors in how well they have been able to wean some of his support! I got to change Andrew's first dirty diaper today- and done like a true parent and not a former PICU nurse- I did it without gloves! :) Gene was able to read him his first book! It is so easy to fall completely in love with this little (or big) boy- we never could have imagined how much he has changed our lives already! We are trying our best to enjoy every moment we have with him and let him know just how very much he is loved and adored!

We can't thank all of you enough for all the comments, prayers and support we have received! We are so tired and wish we could talk with everyone of you, but please understand that we are just wanting to soak in every moment we have with him! As I write this, I am having trouble keeping my eyes open- I completely understand now the exhaustion the new parents have! I'm sure some of it is being anemic as well, having lost so much blood. The good news is that the bleeding is at a very safe level now- which Gene is very relieved about and now we can focus completely on our incredible baby! Will try and most more tomorrow- thanks so much for the prayers and support!

Helping hands...

I am amazed at the incredible care and attention we have received today. Every step of the way has brought friends, both old and new, into our path. The day started with many of our friends giving Becky's anesthesia and assisting with the delivery. Once Andrew was out, Dr. Goldberg (my friend Seth's dad) came over show me his immediate care in the OR and later came to the PACU to give us an update. In the mean time, our friend Jamie was sending us comments on who Andrew was assigned to, how cute he was, and just generally making us feel like we were part of the process from where we were.

But, how to sum up today... Since my last post, Andrew has started ECMO in the Pediatric Cardiac Intensive Care Unit. He is on Venovenous ECMO as opposed to the typical Venoarterial ECMO used in Neonates. When ECMO was first offered as a treatment and we posted, we were just becoming aware of his coarctation. What we did not know is the decisions we would be faced with following this discovery.

Our team huddled and determined there was basically three paths available for Andrew. The first was to discontinue his care and make him comfortable until he passed. The second was the use of Venovenous ECMO since he failed to meet the criteria for Venoarterial ECMO. This holds no guarantees but does give him a small shot at overcoming the pulmonary hypertension when used with Prostaglandins to prevent the closure of his patent ductus arteriosus. The third option was to go to surgery right then to repair both the coarctation and his CDH.

The first was a pretty obvious "no". The third was too as far as we were concerned since we really did not think he would be able to survive the insult. This left us with the second and no matter how small the chances are that this will work, it still seemed like the only real option.

The best feelings I had all day were related to the ECMO process. First, our friend Craig, a perfusionist, was kind enough to come in from home on his day off to be with Andrew as he went on ECMO. This was particularly nice since he then took the time to walk back down to the Unit with me to make sure I was comfortable with my new surroundings as well as answer any questions I had. It was also nice to Bob who was running the ECMO. Bob did not know Andrew was mine when I first walked in the room.

So, as I write this, Becky is dealing with a postpartim bleed. She has been passing blood clots and finally had to receive a drug to allow her fundus to contract and stop the bleeding. We are hoping this will take care of it so she does not have to go back to the OR.

Andrew is doing well on ECMO at this point. His sats are 100%, blood pressure is up and they have been able to come off his pressors quite a bit. He looks very comfortable and that helps me with our decision. It is time to sleep now but we will be back to his bed side as soon as we can.

While today has been made significantly easier by our friends, we have to ask that you not stop by to see Andrew or either of us. With the current flu situation at Duke and his present condition, we feel it would be irresponsible of us to risk exposing him to something. Thank you to all who are following this blog. Your thoughts and prayers have been a HUGE help throughout this process.

ECMO and other findings

Here is a picture of Andrew before his move to the PICU. Yes, Andrew is going to be placed on ECMO shortly. They were able to get his CO2 down some but his pulmonary hypertension needs attention. They have also found a Coarctation of the aorta which will be treated after he comes off ECMO. His head Ultrasound appears normal.

9 lbs 4 oz

Andrew is here! He is 9 pound 4 ounces. Becky pulled through like a champ. Andrew is in the NICU on a jet vent. His CO2 is high right now but he is not on any pressors. We hope to go see him before too long.