Monday, October 31, 2011

Older Brother is a... UPS Man (13 Days Old)

The Ronald McDonald House is big on holidays and helping the kids find a way to have fun.  For Halloween, they offered costumes and candy so that the kids could participate in games, trick-or-treating and eating sweets.  Caleb had first dibs at the available costumes.  He doesn't recognize Spider-man, Superman or Batman.  No, he chose to be a UPS man.  Caleb was so thrilled tonight to wear the UPS outfit.  Everyone at the Ronald McDonald House loved his outfit and several people had to take pictures of the cute little boy dressed like a UPS man.  That's our boy...

Caleb - Dressed as a UPS man for Halloween Party
Jordan is almost two weeks old and had the best day he's had in terms of stability.  Jordan has been easily agitated by the presence of others or physical touch.  Today, however, he was able able to recover and calm down on his own without needing rescues (additional drugs to calm him down).  For the first time, he did not appear to be crying or struggling when awake and looking at us.  Brandi played Plumb's album Blink for him today and he seemed to really enjoy listening to it.

Jordan - 13 days old

Sunday, October 30, 2011

Emotionally Vested (12 Days Old)

Today was an emotional day - but not because of baby Jordan. Both at CHOP and the Ronald McDonald House, we are around other families who are facing very trying times. We have become close with one other couple in particular. Their son also has a severe condition of CDH. They have been at CHOP a month longer than us, so they are very familiar with the ups and the downs of this journey.

Over the course of the last two days, their whole demeanor has changed as their son's condition worsened. They were faced with tough decisions and questions, such as "How much longer would you like us to continue treatment." If they said yes to more treatment, it could cause long-term developmental issues. Of course, the reason they came to CHOP was to get the best treatment possible to give their son the best chance of survival. They opted to continue treatment.

All day, our family prayed for their family. Of course, because of patient confidentiality, we can't find out what has happened. We only know when things have taken a turn for the worse. After a long day of waiting and hoping for some positive news, it came. We are so thrilled that their son is stable tonight after another procedure. The baby's lungs had filled with fluid that needed to be drained. CHOP was concerned enough that they decided to test Jordan as well - just to make sure. Jordan's lungs do not have extra fluids - thank God!

Jordan had another day of much needed rest. In fact, he acted more stable after receiving care. Usually, his stats tumble a bit when he's agitated - not today. Daddy even got to change his diaper. Never thought changing a diaper would be so rewarding. Still waiting on those lungs to open up.

Saturday, October 29, 2011

Bath Time (11 Days Old)

Mommy and Daddy got to give our son a bath today. Well, a sponge bath at least. We even got to change Jordan's diaper. Mommy was very nervous to change the diaper - it's not every day you change a diaper of a baby on ECMO. The nurses were so excited to help us out and take part in his first bath. We would post a picture of bath time but Daddy was busy video taping and not taking pictures.

Jordan looked much better today. He has lost much of the extra fluids he gained going on ECMO. We also heard some exciting news from a nurse practioner. The area where the trachea splits into the left and right bronchial tubes (which eventually split into smaller tubes within the lungs) has opened up. This area was collapsed just yesterday. This is an early indication that the lungs are opening up. The whole purpose of ECMO is to allow the lungs to open and the pulmonary vessels to relax and heal. The lungs may begin to open up in the next few days.

At birth, we take our first breath and it fills our lungs and expands the airways. For babies with CDH, they simulate this by inserting a breath of air in the lungs. The lungs can then collapse as the pulmonary hypertension causes so many issues wih breathing. Jordan's lungs collapsed and his heart was overworked. Once his lungs open up, they will wait to see when his heart and pulmonary vessels are ready to give this another shot.

Another very good day for Jordan.

Update: We were later informed that it is ECMO itself that causes the lungs to close as a result of the inflammation. ECMO only allows the body to rest; it does not heal anything. In fact, Jordan's body is now recovering from going on ECMO. Once the fluids in his chest cavity lower to a normal amount, his lungs will open back up.

Friday, October 28, 2011

Look At Those Eyes! (10 Days Old)

We had chills down our back as Jordan opened his eyes and looked at us.  It was truly the first time since birth that Jordan really looked at our faces and appeared to be awake.  Our second born son - as loved as our first but in a special new way.  He is different than Caleb and has his own personality.  How can you not fall in love with those eyes?

Jordan - 9 Days Old
Jordan was nice and snug today as he used hospital blankets like a body pillow.  Brandi joked that he looked like mommy when she was pregnant with him.  She used a body pillow every night to stay comfortable.  He got much needed rest and needed only three rescues today; as compared to every two hours yesterday.

We posted a quote by his bedside from Andrew Young:

"My hope for my children must be that they respond to the still, small voice of God in their own hearts."

Jordan - 9 Days Old

This House is not a Hotel

As we mentioned before, we are beginning to adjust to our temporary home - the Ronald McDonald House of Philadelphia.  It was the very first Ronald McDonald House.  You are not allowed into this house unless you have a child at CHOP that requires a hospital stay.  It is about a twenty minute walk from the hospital and shuttles are available to take us back and forth every few hours.

As you can see in the photos below, the house is large and built for families with children.  There are two large play areas - one for small children and one for older kids (Caleb enjoys being one of the big kids, of course). He has made a couple of friends who also enjoy trains.  The house has a small train table and a large, automated toy train that is customized to match the holiday season.

The house is manned by volunteers who love to work for the house.  There are guards, a cleaning crew, a social worker, a front desk, etc.  Someone is always willing to help out.  It is not a hotel - we do not have room service and are expected to clean up after ourselves.  It feels a lot like a dorm room.

The meals have been fantastic!  Someone volunteers each day of the week to cook supper and breakfast is prepared on the weekends.  For example, this week we have been provided German sausage, soups, chili, souffle and Philly cheesesteaks.  It is a motivation to eat when the food is prepared for you.

On one hand, it is nice to meet other families and listen to their stories.  It is a place where other people understand our current circumstances and it provides an opportunity for us to be with our son as much as possible.  On the other hand, it is difficult to comprehend so many different struggles that families from all walks of life are facing.  It is unfortunate that so many families need this type of care.

The motto around here is that this is the house that love built.  We definitely appreciate the opportunity to be close to Jordan so that our family can spend as much time with him as possible.

Thursday, October 27, 2011

9 Days Old

To the relief of his parents, Jordan has had a pretty non-eventful day.  This afternoon, he finally decided he was going to rest.  He has been sleeping most of the afternoon and into this evening.  They talked about changing his medications, but he remains on morphine.  It is mostly watch and wait at this point.

The chest x-rays have shown that his lungs have yet to open up.  It will just take time...

Wednesday, October 26, 2011

8 Days Old

Jordan is showing his personality again today by flexing his muscles a bit.  He continues to fight - even on ECMO!  The ECMO circuit is providing life support for baby Jordan - he has all the oxygen he needs.  Today, however, he has continued to try and breath on his own!  The staff continues to be baffled by his drive/toughness.

Everyone was trying to figure out the best way to get Jordan to relax.  After several different experiments, Jordan seems to have won the battle and has gotten his way.  They may continue to let him make these motions as they try to find the "right" level of sedation.  No matter what they've tried, he is determined to do some of the work on his own.  They don't want to sedate him too much because the motion is good exercise for his muscles and helps relieve some of the extra fluids he's gained.  All of his vitals look very good today.

We were fortunate enough to have the whole process, including ECMO, explained to us in more detail today.  At this point, they are trying to let his lungs and heart relax so that the pulmonary vessels can rest and open up.  They believe Jordan has enough lung volume based on his first few days of life on the ventilator.  However, his pulmonary vessels are easily constricted and don't allow for an efficient exchange of oxygen.  That is his biggest threat at this point.  ECMO is allowing those vessels time to rest and heal to give this another shot.  Over time, ECMO should allow his lungs to open up as well.

From the x-rays and tweaks to the ECMO machine, they can determine when is the opportune time to take him off of ECMO and try the ventilator again.  Once stable, they can do the repair.  Again, the repair is essential for long-term growth of the lungs and organ function.  But, in the short-term, the critical factor for Jordan is the pulmonary hypertension.  The difference before ECMO is that the baby has too many new things the body is trying adjust to.  His heart just got too tired.

Overall, this was another good day for Jordan.  He has responded to ECMO extremely well.  As you can see below, he has shed much of the extra fluid he gained from ECMO.  He is peeing well, which is a great sign and makes for good laughs for the nurses (he got one of them today).  You can also see in the picture that he is positioned much the same way he was in the womb.  His fists are up and he likes to put his left hand up to his mouth.

Jordan - 8 days old

Tuesday, October 25, 2011

Happy 1 Week Birthday Jordan!

Jordan is 1 week old and hanging in there.  Overall, today has been a very good day.  Jordan has barely received any blood, which is very surprising for a baby on ECMO.  They are still taking blood samples to test his blood gas.  His saturations and hemoglobin all look good.  The ECMO technician said he is making her job boring - which is good news to a parent!  Now that Jordan is on ECMO, he always has a NICU level 3 nurse watching him and an ECMO technician - 24 hours a day.

Jordan - 1 Week Old
As you may be able tell from the picture above, Jordan has swelled a little.  Again, this is expected due to the inflammation of fighting the equipment.  He may be eligible in a few days to receive a stimulant that will help him shed some of the extra fluids.

You may also notice that Jordan is opening his eyes.  He looked right at us today - including his big brother Caleb.  We're not sure who liked that more, Caleb or daddy.  Big brother Caleb blew him a kiss goodbye today and told Jordan to get better.  He understands what is happening.  Jordan also opened his mouth and licked the tubes, his lips and the Q-tip while we were giving him oral care.  It was very cute.  Grandma really liked seeing him open his mouth and stick out his little tongue.

It may sound strange to say, but today we started to feel more comfortable.  We are starting to settle in at the Ronald McDonald house and get on a routine - as much as we can with everything going on.  Caleb and Grandma walked with us to the hospital today.  We are starting to time the shuttles well so that we can have a ride back and forth without paying parking fees.  The terms that are thrown around by the medical staff  are becoming more familiar.  We are so proud of Jordan and wish we could take this away for him.   But, we love him and thank God for him.  He was wonderfully and beautifully made - we believe he can pull through this.

ECMO - A Closer Look

Let us say that the last thing you want as a parent is a room full of specialists who are puzzled and busily chirping about a phenomenon they haven't seen before.  Again, Brandi walked in on a conversation that was already midway which took her breath away.  Jordan's heart rate dropped last night to very low levels.  This, of course, raises great concern under normal circumstances.  On ECMO though, it is a little different because the circuit is handling the work.  They control the flow, the oxygenation, the pressures - it even controls the temperature of the body by warming or cooling the blood.  Last night, they modified the flow and it seemed to bring his heart rate back up.

Jordan's heart rate dropped again today.  They haven't seen a child's heart rate drop so much on ECMO before.  Baffled by a new experience, 8 or 9 individuals were discussing what the cause could be.  Some were concerned and some were not worried.  But, we got to see their expertise at work.  The team discussed options and came up with theories.  Jordan's vitals all look great with the exception of the heart rate.  The main theory at this time is that the cannulas - the plastic tubes inserted into Jordan's neck - are stimulating nerves in the neck that can affect the heart rate.  They are running some tests to see if this theory is correct.  Jordan's heart rate was good before they put him on ECMO - so, they are hoping this theory is correct.

Leave it to our son to make things more exciting for us.  We had no issues with our heart rates during this conversation.  We have had so many questions about ECMO.  The pictures below show Jordan on ECMO.  Two large cannulas are inserted in Jordan's neck.  One takes the blood out of Jordan's body before it enters the heart.  The blood is oxygenated and put back into his blood stream to be pushed out to the rest of his body.

Jordan on ECMO - 6 days old
They were worried at first that Jordan may be having seizures.  Further testing has shown that not to be the case.  Basically, they have discovered an incidental finding by Jordan being on ECMO.  By the way, the technician that is monitoring our son started with ECMO in 1989 at CHOP - testing it on sheep!

Jordan Receiving EEG Testing - 6 days old
Update: They think they have proved their theory - they added a medicine that stimulates the heart rate and Jordan's heart responded.  The cannulas in the neck are stimulating nerves in the neck that affect the heart rate.

Monday, October 24, 2011

6 Days Old

Jordan has done much better today on ECMO.  He has responded well to the treatment.  They expect Jordan to swell from the inflamation that occurs from fighting the plastics of the machine.  So far, this hasn't happened.  Also, he hasn't needed additional blood as of yet - which is another good sign.

Jordan on ECMO - 5 days old
Brandi says that Jordan is stubborn like his daddy.  He continues to try and breathe on his own today.  What we would like him to do is rest so that his lungs can heal.  Jordan seems bound and determined to do this himself.  They can give him rescues (more medication to make him relax) and modify the settings of the ECMO machine to see if that will help.  When our body has too much CO2 when try breathing harder to exhale the CO2 and bring in more oxygen.  In a sense, it would feel like hyperventilating.

The difference today from yesterday is that the ECMO machine can be adjusted to fit Jordan's needs.  It is doing the work of the exchange so that he doesn't have to.  They have also added an EEG (electroencephalogram) to measure his brain waves.  Since Jordan is on so many relaxants, they would be unable to tell if he is having seizures.  The EEG can measure to make sure he is responding to the ECMO machine successfully.

Jordan is CHOP's 938th ECMO patient.  They have been performing ECMO since May 5, 1990.  As you can see from the picture, the machine is a little overwhelming; especially for parents of a newborn.  You can actually see the blood exit Jordan's body and then get reinserted after oxygenation.  He has been stimulated enough today that we got to see his eyes a couple times.  Those are pretty emotional and exciting moments that we are thankful for.

Praise God that he has responded well to the treatment so far.  ECMO is a one and done deal unfortunately.  Once they come off of ECMO, they cannot go back on - it is the last resort.  It is important that the timing works in his favor.  They are thinking that he may be on ECMO for at least 4 to 7 days - just depending on how the week progresses.

Sunday, October 23, 2011

Procedure is Done - Jordan is on ECMO

We just found out that the procedure was successful - Jordan is now on ECMO. They said the procedure went well and he responded well. In about 20 minutes we will get to see Jordan and tell him goodnight.

Jordan is Going On ECMO

The doctors decided it was best to put Jordan on ECMO. This is similar to a machine used during open heart surgery. Plastic tubes will be surgically implanted into the large blood vessels in Jordan's neck. Blood exits the body, is oxygenated and, then,inserted back into the body. The idea is to give Jordan's heart and lungs rest. This allows the lungs to slowly reverse the inflammation that has occurred from use.

Jordan will still be on a ventilator, it jut won't be doing much work. This will allow them to adjust it over time to see when he's ready to come off of ECMO. The dangers of ECMO are very significant. It can cause internal bleeding because of the thinner they have to give him. Also, ECMO interacts with the child through a large piece of plastic. Plastic is not natural for the body and runs the risk of infection, etc.

The only good news that we have to report is that because Jordan lasted so long without ECMO, they believe he has enough lung volume to survive - he just needs a rest.

Five Days Old

Jordan had another rough day.  His stats remain low and he is having trouble bringing them back up.  Anything that causes tension seems to give him trouble.  His lung muscles are strong and if they constrict, they put tension on the pulmonary vessels.  They are doing everything they can to relax him but other factors make this almost impossible right now.  Even having a bowel movement can lower his stats.

Jordan receiving a rescue
They have tried several things today to help him out.  His bedding was changed so that he can lay flat - the way he was laying may have put too much pressure on his chest.  He was suctioned out because too much fluid is building up in his lungs.  The doctors are currently changing out his breathing tube because it may be accumulating build-up and may not be large enough.  Jordan is also receiving red blood cells/hemoglobin to raise his oxygen count.  Every time they need do a blood gas they have to draw blood.  Jordan's liver cannot keep up in the production of blood which makes his heart work harder to move blood around.  It is the hemoglobin that carries the oxygen to the rest of the body.

Hopefully things will come together for Jordan this evening and tonight so that he can continue recovery.  The hospital is baffled since Jordan was doing so well the first few days.  They have a few more tricks up their sleeve, but the concern is that Jordan may need to go on ECMO.  We have been praying for another family we met whose son was on ECMO.  They were scheduled to remove their son from ECMO today and back onto a ventilator.  Judging from their response, we believe it has been successful so far.  It was nice to be introduced to another family in the hospital.

Tonight we are praying peace for Jordan. He is not relaxing and trying to do the work the ventilator is supposed to be doing. These are critical moments for him.

Saturday, October 22, 2011

Four Days Old

Jordan is now 4 days old, but his third day of life was an emotional roller coaster. Jordan made it through the night very well. In fact, one of the neonatologists said she was optimistic that Jordan could undergo the repair of the hernia next week. With that news, we got a good night's sleep.

Today, we had a more interactive day with Jordan. Brandi has enjoyed reading and talking to him. Jordan held Michael's finger and didn't want to let go. We have played soft music for him. At one point, he even reached out his hands to us - we don't know if he meant to or if it was the medicine, but it was cute anyway.

Jordan - 3 days old - holding daddy's hand
Then, suddenly, his stats dropped. Much of the progress he had made yesterday was lost in 15 minutes. They think it was a combination of things. They changed him over to morphine today because he had built up a resistance for fentanyl - which is normal. They had also repositioned him. Two things happened: 1) the morphine had not had enough time to kick in and he had started to wake up and 2) repositioning him caused some fluids to loosen in his chest. They routinely suction out his chest but too much fluid was present causing an inefficient exchange in his breathing.

All afternoon we have watched Jordan try to recover. As of right now he is stable and his numbers are slowly coming back.  It is emotionally draining to watch his status rise and fall.  We are doing our best to take this hour by hour, day by day.

Here is a sample of one of the nursery rhymes that Brandi read to Jordan:

"God's with me, God's with me,
I'm as safe as can be.
When the rain comes down, I will not be afraid.
God's with me; he keeps me safe.

God's with me, God's with me,
I'm as safe as can be.
When the wind blows hard, I will not be afraid.
God's with me, he keeps me safe."

Friday, October 21, 2011

Two Days Old

Jordan's second day of life has gone much better than his first. His numbers have been trending upwards. His oxygen support levels have come down 50% and the oscillator is doing too much of the work - meaning they are scaling it back a little at a time to see how he handles the change. They tried doing this last night and Jordan didn't like it very much.

From a bird's eye view, Jordan is beating their expectations. As severe as his condition is, he is doing extremely well. Jordan is the boss right now and they are following his lead. We are so proud of him!

The next goal is to see if Jordan can rely on the oscillator less and remain stable. He needs to remain stable long enough to allow some of the pulmonary hypertension to ease. Once he is stable long enough, they can perform his repair. We may be days or weeks out from the repair; it all depends on how he continues to handle treatment.

Unfortunately, grandma and grandpa Legleiter have to head back to Kansas today. They have been a huge help and will be greatly missed. The First United Methodist Church in Hays will be holding a soup luncheon this Sunday to help raise donations. Grandma and Grandpa are heading back to be a part of that. We can't thank everyone enough for your prayers and support. The response and feedback from everyone has bee encouraging and uplifting.

Thursday, October 20, 2011

Baby Jordan Welcome Video

We hope you enjoy a glimpse into Jordan's story. This video shows good close-ups of Jordan, his stabilization after birth, the equipment that is helping him heal and a mom who cares greatly about her son. Please enjoy!

Wednesday, October 19, 2011

One Day Old

Jordan is now one day old - and what a day it was! We were told to take it day-by-day, hour-by-hour, but nothing could truly prepare us for this. What we have learned today is that Jordan is very sensitive to every little change they make. His stats have been up and down all day.

They are doing everything they can to keep his environment controlled. For example, we can't talk on cell phones, he wears ear muffs to block background noise, the lights are dimmed and we haven't been able to provide his oral care. He is on the highest level of support they can give without moving him to ECMO.

The issue is that the pulmonary hypertension is causing a backflow of blood into his right ventricle. This causes a swelling of the right ventricle into the left ventricle - this is called shunting. The trick is to find the right balance of supporting the heart and the lungs because they work together - treatment of one affects the other.

Grandma and Grandpa Legleiter have been a huge help. They helped Grandma LaFond and Caleb move into the Ronald McDonald House. Everyone got to see baby Jordan as well today. We are able to take one visitor in at a time. Even Caleb got to visit him. He was a super big brother by being very polite and quiet.

Our First "Experience"

We made it through what they call the "honeymoon" phase. After a wonderful night of stats and progress, this morning was a much different experience. Because of the pulmonary hypertension (pressure on the lungs), Jordan's acid levels were too high. We are supposed to exhale carbon dioxide when we breathe. Jordan was unable to do that effectively on the ventilator.

Brandi walked in as they began hand-bagging our son. That was very hard to watch. Hand-bagging is much more effective at bringing the acid levels back to normal because of the fast ruthmic motion - but it cannot be sustained for long periods. They successfully transferred Jordan to an oscillator. This is a different ventilator that "pumps" the lungs in short, fast bursts. He seems to be responding to this ventilator much better.

We are hoping that Jordan will not need ECMO. At this time, he is oxygenating his blood on his own and does not need ECMO. They are performing an echocardiogram now to understand the anatomy of his heart. Jordan is stable and calm at this moment.

Jordan's First Hours

We watched as Jordan was stabilized for about an hour after birth. They mentioned that he is feisty - the first drugs they gave him didn't faze him. He was still fighting them as they gave us a chance to look at him before they moved him to the NICU. It is hard to tell, but it looks like he will have dark brown hair and and brown eyes.

Everything is going as well as possible for the first few hours of his life. Brandi has started her routine for pumping and Michael gives Jordan the colostrum. This will help build up Jordan's immune system. He is currently on antibiotics, an IV, ventilator, nitric oxide and an anesthetic. He has responded very well to the treatment thus far. His last blood gas reported good enough results that they are already planning to try and wing him off the nitric oxide to see how he handles it. The nitric oxide helps ease the pulmonary pressure from everything being in his chest. How he handles the next day or two can determine what kind of treatment he will need and when he will be scheduled to have the repair.

Thank you to everyone for such amazing prayers and support! Brandi did amazing today with everything - labor, the emotions of being here in this situation, not getting to hold her baby after giving birth, etc... She is going strong and determined to help Jordan as much as possible. Caleb even got to see baby brother. He was excited to meet his little brother we've all been talking about.

Tuesday, October 18, 2011

Jordan Joseph Has Arrived!

Jordan was born on October 18, 2011 at 6:42pm Eastern. He is 9 pounds 6 ounces! He is being stabilized now and Brandi is doing great.

Here We Go

They are assembling the teams. Jordan is ready to be delivered!

Labor Update

As it was with Caleb, Brandi reached a 9 fairly quickly and things have slowed down. Normally, they would break the water and delivery would continue. However, Brandi tested positive for Group B strep infection. That means there is a chance that Jordan could become sick after passing through the birth canal. This is not that uncommon and can be treated by giving Brandi Penicillin. She was treated with antibiotics when we arrived and she is scheduled for more at 5:00 Eastern. After the second treatment, they can break her water.

GBS does not affect Brandi and we definitely do not want Jordan to become ill - that's why they take precautions. Most likely, Jordan will be born in the next few hours. Brandi is doing well and is resting while we wait for the second treatment.

Jordan is On His Way!

Brandi was ready to come in to the hospital. She was right - she has dilated to a 5. They are preparing for baby Jordan. We are so excited to meet him and can't believe this day is here already!

Labor Pains Update

Brandi is feeling contractions about every 15 minutes. CHOP would like us to come in when they reach a steady 5-7 minute cycle.

False Alarm

How can there be such a thing as false labor? :)

Brandi is experiencing contractions, but they are not close enough together to make much happen. The doctors are glad we played it safe, but sent us home to get some rest. We will see how today goes. We are getting close though and Brandi's body is preparing.

Monday, October 17, 2011

Labor Pains

Grandma and grandpa Legleiter arrived safely today. Caleb had a blast knowing that he had two grandmas here at the same time. Brandi had a follow-up this morning and hadn't made much progress. The plan was to induce labor at 6:00pm Tuesday evening. I guess Jordan doesn't want to wait.

After grandma and grandpa left for the hotel to sleep, Brandi started to feel contractions. We made it to the hospital safely and were admitted at midnight. It is now October 18th and we will see what kind of progress she's made.

Monday, October 10, 2011

We Have a Plan

Tomorrow, Brandi will be in her 39th week of pregnancy! Today's appointment was not much different than the last few appointments: Jordan's BPP scores were fine. His heart, fluid levels, fetal movements and breathing movements all looked good. Jordan weighed 7lbs 15oz! The doctors, as well as us, would like Brandi to start labor naturally sometime this week. The midwife and OB that we met with today made a plan to induce Brandi Tuesday night, the 18th, if labor does not progress naturally. The latest we now have to wait to meet our little baby boy is a week (but hopefully sooner). We know that the Father gives us the breath of life to live, and that is who He is to baby Jordan. Thank you for everyone's support, love and prayers.

Sunday, October 2, 2011

Overview of CDH

We wanted to share an excellent video series published by CHOP. This set of 10 videos gives an overview of CDH, including discovering that your child has CDH, special delivery and future research. As you watch, it is interesting to note that many of the doctors and nurses in the video are members of our team. We thought this was a good time to share these as we prepare for the events ahead.

Saturday, October 1, 2011

Train Paradise

Train Paradise... Well, the destination of our 45 minute train ride was actually Paradise, PA. Only a few buildings were located in the middle of this countryside. Caleb was speechless as the train whistle blew and the engine came to life on the coal-burning train. We may as well have been in train paradise.

We are getting close to the due date for Jordan and decided to relax this weekend by visiting Strasburg, PA. Situated in the the beautiful Dutch countryside, Strasburg offered a welcome retreat where we were surrounded by corn, dairy farms, tobacco and, best of all, trains. Not only did we get to ride in a beautifully restored train, we got to see the Choo Choo Barn - a 1700 square foot motorized model train. The people, animals, cars, trains and airplanes moved. It even altered from daytime to nighttime - house and car lights turn on at night. It was amazing!

We hope you enjoy pictures from our day.