Wednesday, February 29, 2012

We love CHOP!

For those of you who have not been to CHOP, I'm going to describe some of the reasons its a wonderful place! Today Jensen received a sock monkey from Operation Sock Monkey. One of Dr. Fuller's past patients works with this organization to hand make sock monkeys for patients on the CICU. (Dr. Fuller picked out the one for Jensen, she said it was the cutest one there!) OSM also works with Clowns Without Borders. They provide comic relief for families with kids in the hospital, as well as entertainment after natural disasters and other emergencies.

We also learned about CHOP's broadcast channel today. Inside the hospital, they have a televised game show that kids participate in. Its called Wheel of Wonder! Kids call in from their hospital rooms and spin the wheel and get to do a variety of activities: pictionary, singing, etc. Its so sweet to see the kiddos get excited about winning at their activity!

Right now, there is also a Scholastic book fair going on in the atrium. All the proceeds go to the hospital's research programs. Of course Clifford, the Big Red Dog, made an appearance. (Jeremy was sad he missed meeting Clifford.)

Everyday there is something new going on, some fun game for kids to play, a cute dog from pet therapy to pet. On any given day you can walk down the halls and see kids flying down the hallway with light sabers while their nurses run behind them dragging IV poles! You see world-renowned cardiologists playing with kids as they roll down the hall in their little red wagon. Its such an amazing place with a very happy atmosphere. We are so fortunate to be able to take our boy here. We could not imagine any better hospital for Jensen.

Here's a picture of Jensen's shelf by his bed, with his brand new sock monkey!

Good day!

Jensen is having such a good day today! His HR is in the 130s, BP is 70s/40s, creatinine is stable, he is peeing up a storm and his swelling is much better! Today feels like such a relief. We have brought in a few things to decorate his bed with so now it looks super cute! We also have been fighting over who gets to kiss him the most...his cute little pouty face I'd irresistible!

Although Jensen is having a great day I'm still worried about his neighbor Christian. They were born on the same day and we've gotten to know the family, they are wonderful people. Christian has TGA and has surgery this morning. There were a few complications but he's back in the CICU now. We saw how worried and anxious his parents were today and knew exactly how they felt. It's unbelievably nerve-wracking to wait for surgery to end. It's even worse when it takes longer than expected because of complications. Minutes feel like days. I still can't believe Jensen is only a week old, I feel like he's been in the hospital for a month!

Please continue to pray for our baby boy and all the other heart warriors fighting along side him.

Tuesday, February 28, 2012


Jensen had a stent placed in his pulmonary artery today. This was the cause of the uneven blood flow to the lungs. The stent will not grow with him, so there may be a need to re-cath him as he grows and enlarge it. However, we might not need to do this before his next surgery, it all depends on his growth. They also tried to look into his right arm where he had many collateral vessels form (tiny blood vessels instead of one big one). As I mentioned before, the inominate artery coming off of the aorta was also narrow, causing decreased blood flow to the arm. To counter this, his body made a lot of small blood vessels in the arm. Later, they may want to go in and stent the inominate artery, but for now, they left it alone.

The plan for the rest of the week is to let him recover from the cath today and continue with diuretics to get the swelling down. Dr. Fuller wants to try to wean him off of ECMO again on Friday. We spent the later part of the day loving on him, talking to him, and kissing his face off (now that the EEG leads are gone there's room for kisses!).

Jensen also gave us a surprise today! We were by his bed talking away and he opened his eyes! Not just a puny little blink either. He opened his eyes big and wide and stayed that way for a long time. Of course this made me cry instantly because his big blue eyes are so beautiful! He looked at  us as we talked to him and he even tracked me when I moved around. That was such a blessing =) I'm pretty sure I have the cutest, sweetest kid on the planet!

It was definitely a long, exhausting day. We had no idea how hard this would be and it is taking its toll on Jeremy and I.

Found the problem

Jensen did have some narrowing at the pulmonary artery and is having a stint placed now. His nurse told us he is doing well and is stable. Hopefully since they found the source of the problem he will be able to come off ECMO. We have told Jensen many times that he needs to do what Dr. Fuller says! Maybe this time he will listen so we can keep him on the road to recovery.

Back to the cath lab

Jensen is still on ECMO. They worked with him for about an hour trying different things, but his sats still were not as good as they should have been. Dr.Fuller said she could have taken him off but it is not a good situation to reenter the circuit. She is being cautious and is not weaning him until he is absolutely ready.

The chest X-ray showed that one lung is getting more blood than the other so they suspect some narrowing in the pulmonary artery. The cath team just took him so they can try to locate the narrowing and either stint it or use the balloon to expand it. If they can fix the problem and even out the blood flow to his lungs they will try to wean him in the cath lab.

Jensen's nurse will be updating us every hour.

ECMO trial

They are starting his trials right now to see how well he will tolerate it. Dr.Nichols from anesthesia is working with Dr. Fuller to adjust his vent settings before they make a decision. Keep him in your prayers!

Starting feeds

Jensen had such a good day yesterday that he was able to start feeding! He is now officially getting breastmilk at 1cc/hr through his NG tube! Yay! Hopefully his belly tolerates it well and this primes his stomach for bigger feeds later on. We are excited to hear how he did overnight so Dr.Fuller can make a decision about weaning from ECMO. Also the EEG should come off today! Last we heard the small clot in his leg and tiny bleed in his brain have made no changes. They will continue to monitor them with ultrasounds to be sure. Baby steps in the right direction!

Our boy is doing well and I know its because of all the prayers for him. Thank you everyone for praying for him (and for Jeremy and I)! We are so thankful and feel so loved =)

Monday, February 27, 2012

My boy can pee!

Jensen is putting out some serious urine after the wash out! We are ecstatic because this means the swelling is going down! His creatinine level went down (1.4 to 1.3), which looks good for coming off ECMO soon. Dr. Fuller has checked on him several times today and is very pleased with how well he is doing. We are so lucky to have such a wonderful surgeon!

Jensen is also moving around quite a bit because they took off of one sedatives. He moves when we talk to him and makes a pouty lip a lot :) Dr..Licht was happy to see his left side moving so well since he had right brain seizures. His EEG leads should come off tomorrow and we will finally get to see that gorgeous hair again!

Also, Jensen's official nickname is snuggle bunny. As new parents we feel like its our duty to give him a ridiculous name that will embarrass him when he's older ;) he's just so cuddly and cute you can't help but want to snuggle with him!

Wash out is done!

His chest had some clots but no active bleeding. Dr. Fuller has taken him off ECMO two more times and he is looking great! They are taking him off his sedative so he can move around some and hopefully get the fluid moving. His urine output for today is great. Dr. Fuller is still waiting on his creatinine labs to make a decision about taking him off ECMO for good. We are so happy the wash out is very and he's doing well! Now for more baby steps on the road to recovery!

Waiting on the wash out

Jensen is looking especially cute today! He had an IV taken out of his foot so I can play with his cute little toes now! They did a trial of taking him off ECMO and he did really well. They put him back on right away but they think he is strong enough to handle coming off in the next 24-48 hrs. They still want to monitor his creatinine levels (measures kidney function) and make sure they are stable before they start to wean from ECMO. Dr. Fuller will make a decision about that tomorrow. He has not had any more seizures but they are going to keep the EEG on for another day to monitor him. I'm so happy with how he's doing!

This morning I received a very sweet message from a special group of women. Sisters By Heart has been so helpful since Jensen was first diagnosed and they continue to shower me with support and helpful advice. I am so lucky to be a part of these heart mamas! The link to their page is on the right side of the blog. There is a ton of info on their page and you can donate to help them make their care packages for newly diagnosed families.

We will update once Jensen is finished with the wash out.

Report from night rounds

We stayed until night rounds again and went over the plan for tomorrow. He will most likely have his chest drained at around noon. A few hours after that he will begin receiving breast milk through an NG tube (nasogastric tube-goes from his nose to his belly). They will start him out very slowly and see how he tolerates it. Also at rounds they discussed a small blood clot that formed in an artery in his leg where he had the cath. This is common and the clot is small so they are just watching it for now. He is on heparin (blood thinner) so this should help to flush it out. Other than that, they plan to keep things nice and slow they like did today. He's definitely making improvements!

As a side note, we've learned a lot about ECMO over the past few days. Babies on ECMO need to receive blood products to help keep up the volume of flow in the circuitry. Jensen is actually doing well and receiving very little products. However, some kids need liters and liters of blood each day to maintain adequate flow of blood through ECMO. The American Red Cross hands out tons of blood to these patients and runs out quickly. This is my plug for blood donation:

                                         DONATE DONATE DONATE!

We could not keep Jensen stable without that blood. It truly does make a difference. And lastly, thank you all for your continued prayers and support. I can not believe how many people have reached out to us offering prayers,positive thoughts, and donations. It means the world to Jeremy and I. Although we couldn't possibly thank each person individually, know that we are very grateful and feel so blessed.

Sunday, February 26, 2012

Getting better and better

Sorry for not updating much today, we've been busy loving on our boy! He's done so well today. The goal for today was to have no changes and he's some just that! Last night he did start having continuous seizures. Although it sounds bad, it was expected from his doctors. Dr.Licht is his neurologist and is one of two top neurologists in the country. He is not too concerned because they have been able to stop the seizures. As far as long term damage, it is hard to tell but Jensen is young and adaptable. I will be worried when Dr.Licht is.

Jensen's HR is lower and looking good, so is his BP. His kidney function is great so they are still working to get some fluid off. In the morning Dr. Fuller will be opening his chest to drain off the fluid. I'm a little nervous about it but Jeremy and I trust Jensen's life to Dr. Fuller.

He is still moving around some and making a pouty face every time we do mouth care! We definitely love him more every day, I didn't know that was possible :)

It's not a sprint... is a 90 year old lady running a marathon. Progress is slow but definitely there and we are so thankful for that! Jensen is still pretty swollen but looks better today. His HR is better today too. Dr. Fuller started him on a diuretic bc there's still a lot of fluid. Tomorrow she will clean out his chest at the bedside to get rid of a few pockets of blood. Also she is hoping to have him off of ECMO by Tuesday or Wednesday. He is still on a constant EEG to monitor for any seizure activity and a neurologist will look at him today.

He is definitely moving a lot more this morning. It amazes me that even though he is on so many meds and has been through so much he still responds to us. He even moves his lips around during mouth care. Please keep praying for small steady improvements!

Hoping for a good night

We stayed with Jensen until night rounds. He was pretty stable for several hours. He still has a lot of fluid draining right now which his doctors are hoping to slow down. The excess fluid is still driving up his HR to around 190-200. He is making a normal amount of urine, which is always a good sign. He is showing no signs of seizure activity, which can happen when a patient has been O2 deprived and under anesthesia  for so long. So basically the goal for tonight was to focus on getting rid of fluid.

He is awake now but of course he's on heavy meds. He moved his tongue around when we gave him mouth care and moved his feet while I was talking to him. (Mouth care is when we take a cotton swab dipped in colostrum and rub it inside his cheek so he can absorb all the good stuff.) Overall we feel much better about him tonight than this morning. He is improving at his own pace.

Saturday, February 25, 2012

Slowly but surely

Jensen is stable now! His BP and HR are good, his chest is still draining but it is controlled,and the flow of the ECMO is working well for him. His chest is open because he has so much swelling and fluid. The plan for now is to change nothing. He is stable and they want to let him recover some before anything is adjusted.

This boy sure has given everyone a run for their money! Dr.Fuller and Jensen's cardiologists are happy with where he is now. We are still thankful for the small miracles, so today has been a good day overall.

Good news

Jensen is finished with surgery but they are keeping him in the OR hybrid suite to monitor him. They were able to drain a large amount of fluid from his chest, which was probably causing the HR and BP issues. They put in a bigger size chest tube to help drain any more fluid but so far he hasn't had any more fluid buildup. They decided not to cath him yet because he didn't seem to need it. He is off of his High dose BP meds and is back on a standard dose. We still don't know about blocking his BT shunt yet. Dr. Fuller did say that the reason the BT didn't work is because Jensen's anatomy is different. The arteries in his arm branch more into small arteries instead of one big artery. The Sano is working very well now and she is pleased with his heart function.

Things are definitely looking up. Of course we still have a long road to go, but it is so nice to hear good news.

Another long day

Jensen had an ok night. His BP was up and down but his other numbers are good (liver,kidney,etc). He developed a pleural effusion that needs to be drained.They planned to take him to the cath lab to see what was going on, but his HR kept dropping so they quickly decided to take him back into surgery this morning.They are going to block off his old BT shunt completely in the hopes it will raise and stabilize his BP.They will also look for the source of the bleeding.As of now, he is still on ECMO but they might switch the side of his neck it is on. They did an ultrasound on his head last night to Check for bleeding in his brain(standard test for ECMO patients). They did not see any sign of bleeding in the brain but there could be a site of injury around the thalamus. They said not to worry too much about this yet bc ischemia is hard to determine on ultrasound.

It has definitely been a roller coaster couple of days. It seems like for each piece of good news there's bad news immediately following. It is so hard to see him fine one minute and then the next thing we know 20 people (literally) are rushing in and his HR is 20.

Please keep us in your prayers. His body needs to heal so badly to give his heart a break. Jeremy and I need a lot of strength and patients to get through this day.

Friday, February 24, 2012


Jensen's heart is fantastic with the Sano. His little body is a different story. He's been through much today that the rest of his body is having a hard time recovering. So his team has decided that in order to give his heart a break and let his body recover, they will put him on ECMO. This is a heart lung machine like what they use in the OR but he will be on it in the CICU. It will probably take a day to a few days for his organs to start functioning properly again. We will be able to see him soon and then talk with Dr.Fuller.

Still in the OR

Jensen is finished with the surgery and his chest is closed but they are monitoring him in the OR. His BP,O2, etc all look good, but he is showing signs of making acid. They are adjusting his meds to find a combo that he tolerates better. To prevent a repeat of today's earlier events, they will keep him in the OR in case they need to go back in for any reason. This day is never ending. I can only imagine how terrible Jensen feels if Jeremy and I are this bad. Hopefully it will only be another hour or so until he's back in the CICU.

News from Dr. Fuller

Dr. Fuller sent us a message that they are finishing up the surgery. Jensen's numbers look much better this time and she said she is happy with how the Sano looks. We will be meeting with her to go over everything that happened today once he is brought up to the CICU. She did remind us that in reality, kids with Sanos can do better during interstage (betweek Stage I and II reconstructions) than BT patients. I know Jensen is in for a long night, so please continue to remember our sweet boy. He's already proven to be a fighter with an incredible heart!


This is a late update, but they decided shortly after my last post to take Jensen back down to surgery. Dr. Fuller is going to place the Sano. We got to see him as the team was preparing to rush him back down to the OR. He looked so blue and helpless. I just received another call from his nurse saying that they were about halfway through the surgery and things were going well so far. They were about to take him off bypass to see how well he does. Jeremy and I got a sleep room for tonight so we will be sleeping (or not sleeping) right down the hall from the CICU.

In the CICU

We just talked to Dr. Fuller. Jensen is back in the CICU. Some of his arteries (inominate and pulmonary) were smaller than anticipated and caused problems with his O2 levels. She had to do a revision on his BT shunt and that brought his numbers up, but they still aren't ideal. The plan for now is to increase his blood pressure to help oxygenate his lungs. The good news is that Dr. Fuller feels like this issue is a good one to have (if something had to go wrong). They are going to be checking him very often to see how he responds to the increase in blood pressure. If he doesn't tolerate it well, there is a possibility he could need to go back into surgery to have the Sano shunt placed.

She did say his heart function is incredible and he needed very little blood transfused. He came off of bypass with almost no meds (most kids need meds no matter how long they are on bypass). She is very impressed with how strong his pulses are. Dr. Fuller thinks his new aorta is "beautiful"!

Our philosophy this week is "small miracles". The small miracles are what's making us smile even when its tough. We know our little guy has a strong heart and we're sure he's going to do well!

Coming out of surgery

Our latest update from the nurse: Jensen is coming out of surgery! His numbers look great! They did have to repair the shunt that was placed. We should be able to see him soon =) The hard part is far from over, please continue praying.

Things are looking up

We got another call from Jensen's nurse. He said the cath team found the problem (he didn't say what it is yet). Dr. Fuller knows exactly what it is and is going in now to do a revision. She sent us a message telling us that Jensen's sats look great, not to worry, and that he is a strong fighter! What a relief to hear her say that! We should be getting another update in about an hour.

Heading to the Cath Lab

After Jensen came off bypass and the surgery was finished, his oxygen sats were too low (in the 60s for you heart mamas). They aren't sure why yet, so they are taking him straight to the cath lab. He's still with the same team he has been with all day and they are taking great care of him. Lucky for us, we chose CHOP. To get him to the cath lab, his team simply rolls him next door. That saves a lot of time under anesthesia and can give his doctors results much faster. Please continue to pray for Jensen, his doctors, and for Jeremy. Jeremy is sick, so pray he doesn't get any worse so he can spend time with Jensen when he gets out of surgery.

Latest Update

Jensen's nurse called and gave us good news! He is still in surgery and things are continuing to go well.
This was Jensen this morning before surgery:

On his way

Jensen was just taken down by the anesthesia team. We got to spend lots of time with him this morning holding him and kissing his face off! We will be talking to Dr.Fuller this morning at around 8. We will update everyone when we hear any news. Thank you for your prayers!

Surgery Day

Jensen's first surgery will be today (Friday 24th). He will be taken down around 6:30 to be prepped and to have an MRI. From there he will be taken to the OR. Please pray for our precious babe. We will update as we can. Thank you all so much!

Thursday, February 23, 2012


 February 22, 2012. It was the best day of our lives! Our precious boy was born at 1:27 pm weighing in at 9 lbs, 5 oz. His headful of hair is the same color as his daddy's and he has mommy's pouty mouth! He's gorgeous! Jensen had his first echo a few hours after birth and everything seems to be what they expected. The only new finding was that his atrial septum was slightly deviated, but Dr. Fuller already assured us that its nothing to worry about. Jensen has been doing well on room air and we couldn't be happier about how pink he's been =)
Not only are we extremely blessed to have such a stable heart baby, we've been able to hold and nurse him! This was far beyond our expectations! He seems to be a sleepy boy right now and mostly falls asleep when he tries to eat (but he sure does look cute doing it!).
We are so proud of how well he is doing! Today we should be able to talk more with his doctors and find out where he stands. Hopefully we will get a surgery date soon. I also want to thank you all for your support and prayers! I couldn't possibly thank everyone individually because there has been a massive outpouring of love on our little boy =) We are so grateful and will continue to request your prayers. Its no coincidence that our little miracle was born on Ash Wednesday. Thank you all so much!

Monday, February 20, 2012

Meeting our surgeon

Today was one of the most important appointments we have had so far. We finally got to meet with Jensen's cardiothoracic surgeon (CT surgeon). Her name is Dr. Stephanie Fuller and we totally LOVE her! She was down to earth, funny, and very professional. We asked her a ton of questions and she was very patient with us. She described the day of surgery in detail so we would know what to expect. We learned everything from the time Jensen is taken from the CICU (cardiac ICU) until we can see him after surgery. I feel extremely comfortable with her as our surgeon. I've told many people that I feel like every time we go to CHOP I feel like we have won the lottery! Every person we interact with is so helpful and so understanding, we are so blessed to have these people working with us!

Along the way, I'm going to try and post more detailed info about HLHS and the surgeries themselves, because it is a difficult diagnosis to understand. I hope everyone that reads this will take a few minutes to learn more about HLHS (or any other congenital heart defect) and spread the word. February is Heart Month and 1 in 120 babies born have a CHD. There is very little knowledge and very little research on CHDs right now. So instead of just Going Red for American Heart Month, also think about the little ones that are affected by heart defects.

The Normal Heart

The HLHS Heart

The Norwood (or Stage 1 Reconstruction)

Monday, February 13, 2012

Moving Along!

Another week down! The weather is definitely getting colder but not much different than a Tennessee winter. We're still waiting for the typical Philly snow. This week we did some sight seeing and had a great time! We visited the National Constitution Center, Independence Hall, Liberty Bell, and the Fireman's Hall Museum. I also had a deeeeelicious cheesesteak from a little Greek mom and pop restaurant (every restaurant in town has cheesesteaks in addition to their specialty). We walked around Old City and it was beautiful with its old buildings and cobblestone streets!

I also had another prenatal appointment today at CHOP. Things are definitely progressing and my midwife thinks I'll be going into labor on my own instead of being induced! I hope Jensen waits until at least Sunday...our best friends Matt and Steph are getting married on Saturday! We're both excited and nervous to meet our little man! We can't wait to post pics of him on here =)

Monday, February 6, 2012

Passing the time...

In the last week not much has changed. The longer we are here, the more we miss home! I definitely miss southern hospitality. Pretty much everyone we run into is rude, people huff at me because I waddle too slowly for them, and customer service is pretty crappy everywhere we go. But, its like a whole new place when we get to CHOP. Everyone in the Center for Fetal Diagnosis and Treatment is so pleasant and willing to help us. They remember us each week (even with the many, many pregnant women they deal with). Its nice to "get away" from Philadelphia and step through CHOP's doors...

Although we aren't too crazy about Philadelphia, the food is just unbeatable. I had the best french toast I've ever eaten and we found a yummy sandwich shop this week! There is also a frozen yogurt place across the street =)

I had another appointment this morning. It was just a simple prenatal visit with the midwife and lactation consultant. Everything is still looking great with the pregnancy and next week we will discuss specific birth plans. I am so ready to meet Jensen and it won't be long now!

Here's how we've been passing the time: 

 Walking around the campus is so nice! We've been told its practically a heat wave here and the real winter is on its way!
Things get a little wild and crazy in our hotel room each night. We play at least two rounds of chess AND two rounds of scrabble. That's right...we're party animals ;)