Tuesday, November 3, 2009

A Tribute To Andrew

We want to thank everyone who was able to make it to Andrew's memorial service and for your gracious outpouring of compassion, sympathy and love for our family during this difficult time. We are so proud of our Andrew and the tremendous fight that he gave during his short time here. We are forever changed and live for the day we can be reunited with him.

Pastor Benji relayed a powerful message and said some things that we really needed to hear. The staff at Hall-Wynne Funeral Home and Daniel especially were so kind and compassionate to us during this time. Thank you Jen for singing such a beautiful lullaby in honor of our baby. ("You Can Always Come Home" by Andrew Peterson) Another song that Gene and I chose for being very close to our hearts right now is "Homesick" by MercyMe. My mother gave the most beautiful tribute to Andrew- we are so grateful to her for this. We know this was not easy for her to do and we will cherish these words forever:

Tribute to Andrew

by Carol Glass


Where to begin – I have never known anyone in the world to impact the lives of so many people for good as Andrew Weston Hobbs. His journey began early in 2009, and he was loved and prayed for by hundreds, if not thousands, of people across the world as soon as he was introduced to them, either by his amazing parents, their families and friends, or through the blog his parents created, sharing Andrew’s journey and their hearts to the world on behalf of their precious son.

Gene and Becky chose the name Andrew for their son because it means brave – and they knew their son would have to be brave when he was diagnosed with CDH at 17 weeks gestation. And Andrew proved to be just that and more. Everyone said Andrew would have to be a fighter to survive this battle, and he must have heard this early on because he started his kick boxing exercises in utero and boy was he strong! When he was born and we saw the size of his feet, we all had a new appreciation for the kicks Becky and Gene felt from Andrew while he was in Becky’s womb.

Andrew was born Thursday, Oct. 1, 2009 @ 8:37 a.m. and the word love took on new meaning for everyone that met him. The love on Gene and Becky’s faces was unmistakable, and looking at Andrew was like looking at Gene with Becky’s nose! 9lb.4 oz and a head full of dark hair – he was so handsome! I remember the first time I saw him in the NICU – he was supposed to be still but he was busy looking all around – and when I asked if I could touch him he curled his fingers tightly around my finger and won my heart forever. He was such a beautiful baby it was hard to believe he had such a difficult journey ahead of him, but he proved true to the meaning of his name – “brave” – as he faced heart surgery and CDH repair when he was 7 days old.

Throughout his 30 days, his mommy and daddy were beside him, fighting for him, praying for him, caring for him, reading stories to him – his favorite one being “ Guess How Much I Love You”, and holding his hands, imparting their strength and courage to him. And Andrew felt that strength, courage and love and would open his eyes and look right into their eyes, and squeeze their fingers. And what a grip he had! He liked to listen to lullabies his parents would play for him on an Ipod – he had his own headset for quiet times, and he could always count on his mom and dad being there for him, every day of his life, to love him, hold onto him, and stand by his side. It was amazing to see his facial expression when he would hear Becky or Gene’s voice – no matter how sedated he was, when he heard their voices, he would open his eyes and look right up at them, or at times when he was unable to open his eyes, his eyelids would flutter and you knew he was trying to open them, and his fingers would curl tightly around their fingers.

His loving character and cute looks won the hearts of the cardiac PICU staff, as well as the hearts of his parents, grandparents, extended family, and hundreds of people across the country, across the world for that matter, as they joined in his journey.

Andrew’s 30 days on earth changed more peoples lives than I have personally ever before experienced. He drew not only our family closer together but hundreds of families closer together. People who had not prayed in a long time turned to God and prayed for Andrew, and experienced a deeper relationship with our Heavenly Father as a result of this, and people learned the importance of making every day count, and to love each other more deeply.

Andrew had the best parents God has ever given a child, and the example they have set for us will live on forever.

Andrew – your time was short – but your eyes and touch showed how deeply you loved your parents, grandparents, and others. Your parents were with you from the beginning through to the very end of your journey. You remain in their hearts, and in our hearts, forever. We don’t understand why we are here right now, but we look so forward to the day we can be together with you in heaven.

In the meantime, we will try to live as you and your parents taught us to: to be brave, to love deeply, and to embrace whatever life brings you with courage.

Until we meet again, thank you, Andrew, for these gifts you have given us. As Paul said in II Timothy 4:7 “I have fought a good fight, I have finished my course, I have kept the faith”, so the same is said of you, our precious Andrew.



Saturday, October 31, 2009

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

Friday, October 30, 2009

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

Monday, October 26, 2009

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!

Sunday, October 25, 2009

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.

Friday, October 23, 2009

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...


Wednesday, October 21, 2009

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!






Sunday, October 18, 2009

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.

Saturday, October 17, 2009

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.


Friday, October 16, 2009

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...

Wednesday, October 14, 2009

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!

Tuesday, October 13, 2009

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.

Monday, October 12, 2009

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!

Sunday, October 11, 2009

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!

Saturday, October 10, 2009

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.

Thursday, October 8, 2009

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.

Wednesday, October 7, 2009

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!

Tuesday, October 6, 2009

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.

Monday, October 5, 2009

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!

Saturday, October 3, 2009

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

Friday, October 2, 2009

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.

Thursday, October 1, 2009

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.

Wednesday, September 30, 2009

Third times a charm

Well, today has been full of ups, downs, blessings and disappointments. The Pitocin does not seem to be agreeing with Becky today. Since the last post, we have met some amazing new people, had our epidural fail, and had more of the Pitocin induced really long contractions followed by more of the smaller contractions. We ended the morning attempt to start by 9:00 am. From there we decided to give Becky's body a break and make another attempt this afternoon. The plan for this attempt was to try the Pitocin until 10:00 tonight and decide if we would bail to a C-section. So, we started around 4:00 this afternoon and well, we had more of the 6 to 8 minute contractions so we called an end to this a few minutes ago. We were not seeing any progress at all so this way Becky will be able to eat something, take a sponge bath, and sleep a little before our 8:30 C-section slot. So, third times a charm...

Tomorrow morning will be busy but I'll see what I can do to get an update up mid-day.

5 P's

It has been a long night and nothing really new to report. Those that know me expect the 5 P's to be "Proper Planning Prevents Poor Performance". There is a poster over the bed here that lists the 5 P's as "Partner, Protect, Possessions, Pain, and Potty". Seriously, "Potty"... Isn't this a major medical center? Well, I am going to stick with my version.

Our pre-planning started around 8:00 pm when the anesthesia team put in the epidural. Becky was continuing to have the contractions every minute or so but Andrew showed no change in his heart rate with them. The decision was made to place the epidural early in case the time interval between the contractions was too short for Andrew to recover and we needed to do a C-section. I guess this was a good plan because he is still not showing any distress and Becky has been MUCH more comfortable.

The contractions slowed down some and at midnight they started the Pitocin in an attempt to move things along. They stopped the drug about five minutes later because of another really long contraction followed by more of the smaller contractions. This continued for a few more hours but she went back on the Pitocin at 5:00 am. So far so good, though she is having a very hard time getting comfortable.

Shift change is coming and we will miss our nurse Agnes. She has been amazing tonight.

Tuesday, September 29, 2009

Fresh out of the gate!

From a long time listener, first time writer: We are checked into the room and things have finally settled down. They put us on the monitor for baseline vitals as soon as we got to the room. After a few minutes it became obvious that the contractions were consistently one minute apart. That does not allow Andrew any time to recover so in comes the masses. One side of Becky is a nurse placing an IV and on the other is a nurse giving a shot of Terbutaline. Terbutaline was given during one particularly long eight minute contraction and within a few seconds things started to calm down. Andrew's heart trace was rock solid through all the excitement. If this happens again, we will probably have to transition to a C-section.

After this round of excitement, a decision was made to try a Foley bulb to expand her cervix. Basically, a Foley catheter is inserted into the uterus and blown up. This was a painful process but she pulled through like a champ. The pain from this was enough to sell her on an epidural as things progress.

Thanks for the prayers and support. We will keep everyone posted. --Gene

Saturday, September 26, 2009

Photo test from iPhone

Just testing to see if this works! Here are photos of the finished nursery! I think I've finally figured out how we'll post pics of Andrew directly from the NICU! Rocking Andrew in the glider seems to put him to sleep! Gene and I are doing as well as can be expected- getting a little anxious, but for the most part, spending time enjoying time together and our last few days of pregnancy!

Wednesday, September 23, 2009

Free Time On My Hands

Free time on my hands could be a dangerous thing, but I'm determined to be really positive and enjoy this last week where I get Andrew all to myself! We've been reading lots of books and listening to relaxing music and for the first time tonight I was able to rock Andrew in our new glider! I absolutely love going in his room- I can definitely envision bringing him home everytime I go in there!

I also thought I would try making a post from my iPhone so that I won't be doing it for the first time from the NICU. I'm realizing that I can't post pics directly from the iPhone which I thought we would be able to do. If anyone knows how to do that, please let me know. I'll have to post the latest pics of the nursery in another post.

Thanks for cheering us on and for all of the encouraging stories!

Monday, September 21, 2009

38 Weeks

We've made it to 38 weeks now which is a huge accomplishment! Things are definitely getting more crowded in there, but he still seems to be just as active. My amniotic fluid levels were 15 which is great and the nurses said he was showing off on the monitor for my NST today! I had almost constant uterine irritability, but no contractions on today's test. The irritability is nothing new, so they aren't too concerned and even if I did start having contractions, there's not a lot of difference in his survival this week verses next week. The part that makes me really nervous is that his stomach which was in the middle of his chest almost the entire pregnancy is now positioned in the right chest, behind his heart. I can't see how much lung can develop on that side if both the heart and the stomach are occupying the right chest. Hoping I am wrong in that respect. If anyone has any encouraging words about that from their own CDH journey, please share.

I've been trying to pass the time by doing a lot of reading and listening to relaxing music- I figure the music would be good for Andrew also! One week from tomorrow is our induction day- I can't believe how fast it is all going by! There are so many mixed emotions I have going into this. I wish I could keep him safe forever and do the breathing for him if need be, but I know this is not practical especially since I've outgrown almost all of my maternity clothes and I can't possibly imagine my belly getting any bigger than it already is. I'm definitely getting quite a few stares when we go anywhere in public now :). Part of me is tired of not knowing, that has been the hardest part of all of this, having your whole life in limbo. Part of me wishes there was more they could do to predict the outcome of these babies, but then I couldn't ever imagine going through this having been predicted the worst possible outcomes. For that, I am grateful to just not know at this point.

I'm looking forward to the fall weather- it's my favorite time of year! There's just something about the crispness in the air, the leaves changing color, the fall decorations and everyone preparing to spend time with family and friends over the holidays. God has truly blessed us with so many things- to live in this great country with excellent medical care, our freedom, a roof over our heads and good food to eat and most importantly so many loving family members and friends to share each day. Thanks for all the support and the many prayers we have received. I know I say this often, but I sincerely mean it and do not take you all for granted for one second.

-Becky

Thursday, September 17, 2009

And The Verdict Is......

An attempt at a vaginal delivery with a low threshold for switching to a c-section is the path we will take! I am very excited about this- I know that a vaginal delivery is better for Andrew. I feel better that the doctors all think it is the best thing for both of us to let me try! We are to report to L&D at 2:00pm on Tuesday, September 29th hoping for a vaginal delivery sometime on September 30th.

The crazy thing is that my NST today had the least amount of uterine activity yet and that's off the procardia! Andrew, as usual looked fantastic! Hopefully I have not just jinxed myself and Andrew will be able to stay in there and continue to work on good lung development until the 30th!

Some people have asked me what to pray for specifically. These are the big things on my mind: good lung tissue and lung blood vessel development for Andrew; that he will be able to feed okay when that time comes; that everything with his brain will be okay; peace for Gene and I up until, during and after delivery; strength to keep a positive attitude for Andrew and not break down; that God will heal Andrew and guide all of the many wonderful doctors, nurses, respiratory therapists and other professionals who will be helping Andrew along the way.

These are the two bible verses that I have been clinging to and using to keep me focused:

Do not be anxious about anything, but in everything by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding will guard your hearts and minds in Christ Jesus. Phil 4:6-7

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen and help you; I will uphold you with my righteous right hand.
Isaiah 41:10

Thanks for all the prayers and support! It has made a world of difference to us!

-Becky

Monday, September 14, 2009

Happy 37 Weeks!

Let me start by saying thank you so much for all the support, comments and prayers you all have given us! Gene and I are overwhelmed with all the love and encouragement that we have received while on this crazy and unpredictable journey! The stories and support of those who have been down this road before us have not only meant so much to Gene and I, but also to our family and friends who are walking this road with us!

I've had a few days to adjust to the latest news and so much of it is up in the air anyway, so I thought I'd post something happy! Andrew has made it to 37 weeks! This is a huge milestone for us considering all the preterm labor issues and contractions! He passed the NST today with flying colors and no signs of hydrops! We have the majority of the nursery decorated. We are still waiting on the glider to come in and will be getting the majority of necessary baby care items once he no longer has a breathing tube and we know more what his needs will be. I love going in his room and looking at everything- it really gives me hope that we will be bringing him home in a couple of months and everything will work out okay!

Thought we would post a couple of pictures of the nursery and let my family see just how big my belly really is now! :) Lucy is getting ready for Andrew to come home as well- I have a feeling it will be hard to separate the two of them! Hope you all have a great week!







Thursday, September 10, 2009

Trying Not To Be Devastated

So our much awaited 36 week ultrasound has been completed. I always hold my breath a little going in, because this CDH road seems full of suprises- and I was not disappointed in that thought today.

Up until today, the only problem they have found with Andrew was the CDH. I had chosen to not do an amniocentesis only because Gene and I were not okay with having an abortion should the results show a syndrome or aneuploidy. (I hold no judgement on those who feel differently- this is just the way Gene and I feel for our own family) Our fetal ECHO was normal and there were no other soft markers for down syndrome or other associated syndromes.

Today, Andrew's left lateral ventricle is showing mild ventriculomegaly. Basically, this means that he has more than the normal amount of cerebrospinal fluid in his brain. There could be several reasons for this: syndromic association with the CDH, aneuploidy, his large head size or a normal variant. Yet another frustration going down this road- there is no way to tell which it is until after he is born. They said that because he has CDH and they are doing frequent ultrasounds is the only reason it was detected since it did not show up at our 2nd trimester anatomy scan or any other ultrasound scan until today. For those of you that are not aware, for CDH babies that have an associated syndrome, the prognosis is almost always fatal. For isolated ventriculomegaly, the outcomes are usually pretty good with maybe a slight initial developmental delay, but Andrew's is not an isolated problem since he has CDH. The other news is that his stomach is now shifted to the right chest along with his heart. They were unable to obtain good views of his liver position.

We received two different opinions today on the birth plan: one doctor said an attempt at a vaginal delivery with a low threshold for switching to a c-section was reasonable, the other doctor thought a scheduled c-section would be better. They are going to discuss our case in conference next week to see if the entire group can come up with an agreed plan. I was told to stop taking my procardia at this point as well. So we may not even make it to next Thursday's conference. At this point it is all well beyond my control.

It makes me so angry that my child has this horrible condition. It's not fair that anyone has to go through this agony. I want so much to believe that God has a greater plan in all of this, but my faith has never been tested more at this point. So what do I do from here- I get the crying out of the way and maintain the most positive attitude I can for Andrew's sake. I will fight this battle with him and pray for strength and peace and comfort for Gene, Andrew and myself along the way. I don't feel like talking to anyone on the phone today- I need some time to deal with this- but please let us know you are thinking about us through email and posted comments. Thank you for all the prayers and comments- there are no words to express how significant they are to us right now!

- Becky

Monday, September 7, 2009

Happy Labor Day = Not Being In Labor!

Would any labor day really be complete without a trip to labor and delivery yet again? I'm beginning to feel like the boy who cried wolf- everyone at L&D thinks this is not the case because I've had so many contractions every time they have me come in, but I'm not entirely convinced myself. I didn't think I needed to go in today, but the doctors in L&D thought that 9 contractions per hour were a little too much even if they weren't painful or coming at regular intervals. I definitely would rather play it safe, especially where Andrew is concerned so Gene and I packed up and headed in so they could check out the latest action. Good news- no change in my cervix- still not dilated! Gene and I got the impression from all the great people up there that Andrew is going to come before our plan for September 29th based on all the activity. They said that there is nothing that can be done to stall labor if Andrew does decide its time to make his debut at this point. They were comfortable sending me home mainly because we only live 15 minutes from Duke and it always comes in handy that one of my high risk OB doctors lives three doors down from us.

Gene and I are thinking we should start a poll for Andrew's birthday and time. I'm hoping for at least another week of keeping him in there. We have a growth and development ultrasound scheduled for Thursday and will talk further after that about vaginal or c-section delivery based on his head size. I'm hoping that we can get some cute 3d pics of him. This may be the last time I get to see those cute little lips for a while without a tube or tape obscuring the view- not something that an expecting mother should have to think about, but reality just the same. As far as my frame of mind these days- it is pretty positive. I have this overwhelming peace that is an incredible feeling to have going into all of this. Praying that this peace will continue as things play out over the next month.

Hope everyone was able to enjoy their holiday weekend! I'll update with our ultrasound results if we don't have any other changes before then.

-Becky

Friday, August 28, 2009

Contractions

My NST today was still showing quite a few contractions despite the procardia. Thankfully, they were not really painful or coming at regular intervals like they were last Friday. They checked my cervix after Tuesday's NST and it was still closed, but I can't help but to be a little nervous that it will all change very soon. I just really want Andrew to make it to at least 37 weeks if at all possible.

My friends and neighbors have all been so wonderful, bringing by different meals and "calcium supplements" of Ben & Jerry's! It's so hard to admit to needing help sometimes, but everyone has been beyond wonderful in helping out and checking on us! Gene and I cannot thank you enough!


Two of the CDH babies that have been born recently are now on ECMO. Their names are Ireland and Max- please keep these babies and their families in your prayers.

I am still just taking it one day at a time and am thankful for each day that Andrew is still okay! Thanks so much for all the prayers and support! Hope everyone has a great weekend!

Saturday, August 22, 2009

Bed Rest

So I woke up feeling envious of my husband who was going out of town for the day for a business meeting. I've been told not to do any traveling for a while now and its been hard not being able to go anywhere fun this summer. It was Gene's last trip out of town and since my fetal fibronectin came back negative on Monday and Gene was only going to be gone during the day, I didn't feel too uneasy about it.

I did not go to work yesterday for the new four hour shift because it was a light surgery schedule and they offered me the day off since I had so much activity with my NST the day before. The extent of my activities included a hair cut, grabbing a quick lunch and getting about 5 items at the grocery store- certainly not over exerting myself by any means. I came home and took a nap which usually helps my contractions slow down or go away for a while. Except this time, when I woke up I had 6 contractions in a 20 minute period all spaced at regular intervals. I called L&D triage and they said I could try drinking another glass of water (I was up to 7 glasses already that day) and see if that helped, but that they would definitely want to have me come in if they didn't slow down. I continued to have two more contractions still spaced equally apart, so I headed out the door trying unsuccessfully not to cry. I let Gene know what was going on and he was trying to catch an earlier flight home. I was praying that I wouldn't have to go through Andrew deciding to come without Gene being here. Gene has this great way of calming me down and making me feel like everything will be okay- it's one of the many great reasons why I love this man I married. We are very good for each other.

Gene was able to make it into L&D for about the last half of my 9 hour stay. They tried giving me i.v. fluids which didn't help at all. My cervix had not changed since Monday's exam, but the contractions were still continuing to come every 3-4 minutes. The next step was two separate doses of nicardipine. This is a medication that helps the uterus relax by blocking the calcium that is required for the contraction of the uterine muscle. They still couldn't get things to slow down right away, so they gave me a shot of steroids in case Andrew should decide to make his grand entrance in the next week or two. We ended up staying there until about 2am before they saw a seven minute break between contractions. They rechecked my cervix which was unchanged and sent me home with a prescription for nicardipine and instructions to come back to L&D tonight to get a second and final shot of steroids. Needless to say, working is out of the question now. The good news is that I have had very few contractions today, so maybe the nicardipine is doing it's job! Andrew handled all of this with flying colors. In fact, he was so active with good heart rate variablility that they ended up monitoring only my contractions for the rest of the stay.

So my journey of modified bed rest begins! Can I just say how much I love Netflix and their instant download section, not to mention the local library. If anyone has any great books they have read lately, please let me know the titles so we can get them at the library. Hopefully, we can stretch this out for another 5 1/2 weeks until our induction day! Charlie and Lucy are going to love having someone home during the day, be we worry how they'll adjust when Andrew is born and we are hardly ever home for a while. Thankfully, we have good neighbors that have offered to take them to play with their best friends down the street when that time comes.

Hope everyone is enjoying their weekend and doing something fun! Will post if anything changes!

Thursday, August 20, 2009

NST

So this morning I went in for my 2nd NST (my lst one was last week) and was thinking I would do pretty well. I usually just feel the occasional contraction in the morning and it's not until the afternoon that I really start feeling a bunch of contractions after I've been working. So I was completely taken by surprise when the nurse came in at the end and said do you realize how much uterine activity you're having- WHAAAAAAT?. Not at all what I was expecting! Then she really got more concerned when I told her I only felt the occasional contraction this morning and that it usually is really bad in the afternoons after being on my feet all day. My fetal fibronectin test came back negative from Monday, so that was good news and that's all I knew to tell her. She sent me to ultrasound with a second cup of water to drink and told me I should start taking it a little easier.

After they checked my amniotic fluid levels, Candace (the ultrasound technician) said she was going to show the doctor my pictures and she would be back. This is routine for us after every ultrasound- so again I was thinking not a big deal. My AFI was 21 which has been that way for the last two weeks. When she came back in the room, she said that the doctor wanted to speak with me in a conference room! PANIC!!!!!! Let me also say that Duke has many ultrasound technicians, but this happened to be the same one that did our 17 week ultrasound where we found out Andrew had CDH! And to top it off, I was alone, because I thought these appointments wouldn't be a big deal and told Gene it would be fine if he wanted to go on to work instead! I was frantically text messaging Gene who was trying not to freak out- I told him I would call as soon as I spoke with the doctor. After seeing the look on my face, Candace quickly added that she didn't see any hydrops on the ultrasound. This made me feel a little better, but it seems like there a lot of surprises along this CDH road.

So after all the worry, Dr. Boyd came in and said that I was having a lot of uterine activity and in combination with my increasing blood pressure, it was time to try and reduce my work hours to see if this would help. So big relief in that I was expecting so much worse! Not great that I'm having so much activity, but Andrew seems to be handling it well with his heart rate and movement and if it was really severe, then Dr. Boyd would have put me on bedrest all together. So maybe going to down to 4 hours a day at work won't be so bad. It helps to keep my mind off everything and I really enjoy my job, so I'm hoping the extra time off with not wreak havoc with my mind!

Also, more big news! We have our induction date set! It's still not decided if I will have a c-section or vaginal delivery at this point so they have reserved two different times. September 29th at 2:30pm is when we are to go into the hospital for induction if a vaginal delivery is planned, hoping to deliver on September 30th. If a c-section is planned, then 10:30 am on September 30th! There a lot of different emotions that run through my mind when I think of that day. I'm terrified to let him go, knowing that I will no longer be able to protect him- that is the scariest part for me. At the same time, I am really hoping we can help Andrew kick this thing, and I can't wait to get to meet him and finally start our lives together! Someone at work said something that really helped me- being a parent is a life time of learning to let go. Whether its letting them cross the street by themselves for the first time, their first day of school or taking them to college- a parent's life is filled with moments of letting go and trusting. Obviously this fight for his life is on a whole different scale, but I must learn to let go and trust just the same. For now, living one day at a time and knowing Andrew is safe and happy and kicking like crazy is all I need to know!

Monday, August 17, 2009

33 weeks

So, it's been a busy couple of weeks! On Friday I was able to meet baby Carter who is a CDH survivor. Brad and Kellie (Carter's parents) were really helpful and had some great tips for surviving the NICU and this whole process in general! Thank you so much you guys for taking the time to meet with me and for allowing me to meet Carter and see how absolutely fantastic he is doing! That visit did so much for my spirits! Gene was disappointed he wasn't able to get out of work to meet you, but maybe next time it will work out!

I had a great birthday yesterday! Andrew was kicking up a storm during church! He absolutely loves the music and reminded me by kicking me in the ribs and lungs for about a solid 45 minutes! I guess it will be too early to start music lessons in the NICU though! Gene and I really felt like the message was directed completely at us. I may never understand why God has chosen this path for us and for Andrew, but I was reminded yesterday that in the midst of uncertain times, God is still in control. I pray that ultimately in the end, his plan is to allow Andrew to have a long, healthy and productive life.

So, today we had a growth and development ultrasound again. The big boy is measuring at 5 lbs and 1 oz already! He is in the 64% for size according to one chart they used and 71% according to a different chart- bottom line- we think he's going to be a big boy! Head circumference was measuring at 37 weeks 5 days (>99%)- I'm thinking we are seeing a c-section in our future, but the doctors haven't committed to either way at this point other than to say everything looks structurally normal and they do not think he has any sort of syndrome or hydrocephalus. My amniotic fluid levels are starting to rise some- up to 22cm, but Duke does not consider it polyhydramnios (too much fluid) until it reaches at least 30 cm. So hopefully Andrew will still be able to swallow and digest the fluid and it won't get any higher! Other good news- his liver, gall bladder, kidneys and spleen were all pretty clearly visible and are down in his abdomen where they should be. His stomach and some intestines were still up in his chest. He was taking lots of practice breaths- which is always encouraging for a mom to see! Way to go Andrew!

My blood pressure was borderline high and I was given instructions to check it at work and that I would have to come in and be seen if it gets any higher. Still having a ton a braxton hicks contractions and some real contractions, but they checked my cervix and said it still looks good and we are waiting on the fetal fibronectin results (if these results are negative, it is very likely that I will not deliver in the next two weeks). We are still hoping to make it to 39 weeks! We couldn't be any happier with the care we are receiving at Duke- they are truly a fantastic group of people! Thank you for keeping our family in all of your prayers- it means so much to us to have all of your support going through this! To those of you who left comments, thank you! Gene and I really found them so encouraging! Hope you all have a great week and I'll keep you posted if anything changes!

Thursday, August 6, 2009

31 weeks 3 days



So today we met with the pediatrician that will be taking care of Andrew if we are fortunate enough to get to bring him home. He explained that his role in the beginning will basically be to just check in and visit Andrew while he is in the NICU and then will be extremely involved if we get to the point of approaching discharge to home. He said that babies like Andrew are why he does his job. He's happy to take care of the healthy little guys as well, but taking care of Andrew and hopefully getting him to the point of being a healthy little guy one day is his whole reason for going into pediatrics. That was such a relief to hear as I'm sure we will get to know each other extremely well during those first few months that we get to bring Andrew home.

We also had an OB appointment and an ultrasound to check for fetal hydrops and polyhydramnios. Everything on the ultrasound looked status quo. His liver is down in his abdomen and his stomach along with a lot of his intestines are up in his chest. Duke does not do the fetal lung to head ratio that a lot of centers do simply because they have not found it to be predictable at all for how well a baby will do after they are born. We did get to see him taking practice breaths though! I would love for them to tell me that his case is not severe, but we know that there is a lot of stuff up there in his chest and this battle will not be an easy one for him.

On the ligher side- he has a ton of hair! Gene was born with a head full of hair, so he must be getting that from him. Instead what he gets from me is a huge head- great! Just what a mom approaching delivery wants to hear. Babies with big heads run on my side of the family. I am 31 weeks 3 days and his head is measuring at 37 weeks! Please don't tell me that I'm going to give birth to a 2 month old! They reassured me that this does not indicate any sort of syndrome and will do another growth and development scan in two weeks.

I have a non stress test scheduled for next Friday and another ultrasound for August 17th. We'll keep you all posted! I want to thank everyone who is checking in on us and keeping us in their prayers. We couldn't make it through this without all of your support!

Saturday, August 1, 2009

No News is Good News!

Its been a while since any major updates. I'll be 31 weeks on Monday. I'm continuing to go every two weeks for ultrasound visits. At this point, there is NO evidence of fetal hydrops or polyhydramnios. Fetal hydrops is like congestive heart failure for a fetus where there is so much compression of the heart from other organs in the chest, that the heart has trouble keeping up with the circulation and fluid begins to back up to other places that it shouldn't be. Polyhydramnios is extra amniotic fluid that could occur if Andrew were to begin to have trouble swallowing and digesting the fluid. This can occur with CDH babies because the stomach and intestines are compressed in the chest rather than having more room to develop in the abdomen. Thank God that so far Andrew is having neither one of these problems!

As far as lung development goes, there are two areas of lung tissue that we have seen on ultrasound. The lung on the left appears to be bigger than the lung on the right which seems kind of crazy for a left sided CDH, but nothing seems to be predictable with this defect. I am thrilled that there are two lungs visible though and hoping for the best!

Gene is in Florida this weekend for his last weekend diving before Andrew arrives. He is having a great time and getting in some wreck diving and some cave diving! My mom is visiting from Florida while Gene is away and we are having a great time shopping for baby things, getting the nursery ready and seeing chick flicks! I will post pictures of the nursery once we get the wall paper border up- I've been told that is not a task for a married couple to do together- so we are going to hire someone for that part only. Gene had done a great job painting the nursery and putting the furniture together! It makes me feel so hopeful when I see it coming together like this that we will be able to beat this horrible diagnosis and be able to bring Andrew home!

Fetal ECHO

May 22, 2009

So today we had a fetal ECHO done to evaluate Andrew's heart. From the ultrasounds he has had up until this point, they think everything looks structurally normal, but it was hard to get good views of his heart due to the stomach and intestines being in his chest. When we walked into the children's hospital, the first people we saw were our friends Wendy and Craig who were there with their baby Cameron getting his follow up visit from his big heart surgery he had last week. Cameron has really done well and amazed everyone by going home less than a week after open heart surgery! I know Andrew's story will not be the same, but we are hoping that he will be able to have a quicker than expected recovery as well!

The cardiologist was able to get a good view of Andrew's heart and told us that everything at this point looks structurally normal. The only defect that they are not able to rule out until after he is born is a coarctation of the aorta. The other great news is that because he does not appear to have a heart defect and everything other than his hernia looks normal on ultrasound, the chances of him having a syndrome are very slim! The cardiologist did sort of say to himself as he was reviewing everything, "he sure does have a lot of stuff up there" which was not great to hear from a parent's point of view. His liver still appears to be completely down in his abdomen at this point and when I asked the cardiologist how severe his hernia looks he told us middle of the road. I do appreciate his honesty and am hoping that things will stay this way and not get any worse.

After our appointment, we met up with Wendy, Craig and baby Cameron at Fridays for lunch! It was so nice to spend time with another family who have been down a long road with medical problems and still have a great sense of humor! Gene and I really had a great time!

Thursday, July 30, 2009

A Summary of the Beginning of Our CDH Journey

April 27th, 2009

As Gene and I got in the truck to go to our 17 week ultrasound appointment, I told him that I was so excited and I just wanted to completely live in the moment. I knew from being in healthcare that many people experience problems and there are many sad and challenging things that can happen during pregnancy, but we had no reason at that point to believe that we would have to go down that road ourselves. I told Gene that if it all changes after our ultrasound, let me be really happy and excited for right now. Little did I know how much our lives would drastically change just one hour later.

Andrew was so active during the ultrasound that the technician had trouble getting some of the pictures at first. We had to laugh when we saw him playing with his toes and he was not shy about letting us know he was a boy either! Gene and I kept thinking, "wow, they sure do take a lot of pictures", but we really had no idea that there was anything wrong. After the technician left the room to review everything with the doctor, she came back in and said that she did need to get some more pictures and that the doctor would be in shortly to speak with us. I think I honestly felt my heart drop to the floor in that moment. I knew that something was very wrong, but I had no idea what it was until the doctor came in to speak with us.

The doctor explained that Andrew had a hole in his diaphragm which was allowing his stomach and intestines to remain in his chest cavity. The problem with this is that his lungs would not have room to develop properly. They gave him a 70-80% chance of survival since we are at Duke ( the national survival rate for this defect is 50%) with a 50% chance of requiring ECMO which is the lung/heart bypass machine. He would likely remain in the NICU for several months if he survives. They told us that other defects and syndromes are very common in babies with CDH and scheduled us for a fetal ECHO at 23 weeks to look at his heart. They offered to do an amniocentesis and to terminate the pregnancy which Gene and I refused. Terminating the pregnancy was not an option for us and the amniocentesis would not help Andrew in anyway and had risks of miscarriage involved- I wanted to give Andrew every fighting chance at survival!

I had taken care of babies on ECMO before and knew that kids are very resilient and can really surprise you when you are thinking the worst. I have also taken care of kids who have unfortunately not won their fight to survive and have held them as they died when their parents could not make it or it was too hard on them. I was begging God at that moment and still today to let Andrew be one of the ones that survives and has a good quality of life! With everything in me, I want him to survive and win this fight against CDH!