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.