"He is there not only when we cry out from the burden of sin but also when we cry out for any other reason." -Bruce D. Porter

Friday, September 27, 2013

Bronchopulmonary Dysplasia

Bronchopulmonary dysplasia (BPD) is a chronic lung condition that affects newborn babies who were either put on a breathing machine after birth or were born very early (prematurely).

Babies who have had BPD are at greater risk of repeated respiratory infections, such as pneumonia,bronchiolitis, and respiratory syncytial virus (RSV) that require a hospital stay.

Other possible complications in babies who have had BPD are:

We met with a pulmonologist last week at BAMC.  He was the first doctor who suggested that Seth's issues as a preemie in the NICU (one of them being Bronchopulmonary dysplasia) as being the reason for his Pulmonary Hypertension.  Other doctors said it could be, but weren't sure or were wondering why it would manifest itself so late if it was. So I just assumed this was just another thing to deal with with Seth.  But after talking to the pulmonologist, everything clicked! Now, this is not 100%, we are still looking at things, but why would the doctor who did the heart cath say his lungs looked abnormal? Because we didn't know any better, we didn't know what questions to ask.  And I don't remember ever discussing anything else about it.  The pulmonologist did a chest X-ray and did confirm that the lungs looked abnormal. We go back to see him again on Monday. He wanted to read over Seth's medical history and talk with us again. We just briefly met him during our cardiology appointment.  As far as treatment goes, not much changes, but knowing why Seth has pulmonary hypertension for some reason makes me feel so much at peace.  He has been really blessed. He has never suffered from any respiratory illnesses that have put him on the hospital.  All of Seth's other issues (poor growth, slow learning) could be related to BPD as well, who knows.  Right now we are looking to add an inhaled medication to Seth's medicine regime.  I am not against IV treatment. I believe we will know the answer to all things as the time approaches. It just feels good to have some answers. I have been reading medical journal articles that make my mind spin and I have to look up a lot of words to make sense of the meaning of things. I will not be an expert, but I want to know what and why the body behaves as it does.

Friday, September 20, 2013


Seth is enjoying school!  He picked this hat out of the prize bucket one day!  He's so funny!  

Saturday, August 31, 2013


We had another appointment with our cardiologist. Things are still the same (pressures between 80-90) but no worse. A blessing! Seth shows no symptoms of Pulmonary Hypertension. Another blessing! What's even better is that Seth now weighs 31 1/2 pounds and has the best appetite of his life! Last year, Seth leveled out at 29 pounds and flat lined there for almost a year. Many blessings have been felt this past month.   Seth has a good quality of life right now, so we will not do anything different, except we will increase his sildenafil slowly over the next few months, but this is all for now. We feel so blessed right now!
Here is Seth during his echo. He kicked back and fell asleep! The echo tech never had it so good! No wiggly crying child to convince to hold still! 
Seth only gets a little nervous when they attach all the wires for an EKG. He is a little uneasy that they are going to poke him. No Seth, the lab guys are responsible for that! :) But Seth does well if he's got a little Angry Birds to play!

Wednesday, August 21, 2013

Schools a coming!

We only have a few days left of summer vacation!  It is crazy! I will have all my children in school! I think I am going to cry.  I am so nervous for Seth to start school.  I have no idea how he's going to react.  Will he cry? Will he be happy? Will he fall asleep during class?  Oh boy, Monday will tell!  This is also the first year that Alex will be in the same school as one of his siblings.  He has never been in the same school at the same time with a sibling, ever!  I am happy he can finally be in high school with Kate.  If we had stayed in Maryland, Kate and Alex would have been in different high schools. Emily is the only child in a school all by herself.  Tomorrow we get to find out who Dane's and Karsten's teachers will be. For Seth we will find out Friday.  I will be the parent who has to be escorted off campus by the police because I can't let go!  I think I will be crying more than Seth.  But, we will survive!  This also means I can volunteer at the school, at all the children's schools!  I am excited for that.  Kate will be a freshman this year and she is so excited to start high school.  She has so much confidence, I am happy for her!  

Texas is still pretty hot!  I occasionally check the weather in Maryland, and long for cooler temps!  Ok, there was humidity, but it definitely was cooler.  When we went swimming in Maryland, Seth would always turn blue after about half an hour in the water.  He doesn't turn blue here!  So he spends a lot more time in the water.  

Saturday, July 20, 2013

Cub Scout Day Camp

This was the first time Dane and Karsten were able to attend Cub Scout Day Camp. It was five days of fun for them! They loved it! They had six classes they rotated through everyday: BB Guns, Archery, swimming, science, crafts, and games. Each day was something new.  I was able to chaperone on one of the days and I enjoyed it! I even got to take a turn shooting a BB gun! It was fun and I am so grateful the boys were able to go. When I went, I was with Dane's group so I didn't get any pictures of Karsten. But I know Karsten had so much fun. Karsten and Dane are really good shooters! Must get it from their dad! The weather was perfect all week for southern Texas! Clouds with rain here and there kept the temperatures nice and cool. Friday was the only day of full sun. The boys are looking forward to when their dens begin regularly meeting again here at the end of August! 
BB Guns were one of their favorites! Dane and Karsten were both great shooters! Belt loops and pins earned for sure!

What a great shooter, Dane! Anything inside the red and yellow is a bullseye!
Dane wanted to take a picture of all the stickers he got on his shoes while hiking!

Wednesday, July 3, 2013


It was a hot one in Texas last week!  Luckily on Sunday it rained and it has cooled down a bit.  Ok, well, I guess cooling down from over 100 to around 90 may not seem like much, but we can sure feel it!  We normally go swimming in the mornings and it is already in the 90s,  Today it was only in the 80s when we went swimming, so Seth didn't last too long.  He was blue pretty quick and wanted to get out and dry off.  Poor guy.  Even though he is quick to turn blue, his oxygen saturations have always been good.  I don't think I have ever seen him go below 93. He never sats at 99, but anything above 90 is considered normal, although higher 90s is preferred.  Seth has a great appetite right now and the first thing he always asks for when he wakes up is breakfast!  And he usually has a bowl of cereal before bed, but darn it, we can't get him to hit the 30 lb. mark!  He made it to 30 pounds right before we left Maryland, but due to an episode of being sick on our trip to Utah, he dropped a couple of pounds!  So, I guess we have been trying to make that up and get him to gain weight.  I have one child who needs to lose weight and one who needs to gain!  I wish we could get some kind of compromise going between these two kiddos!  

I am slowly getting the house unpacked.  Most everything is unpacked, but there is a box here and there that needs to be sorted through and put away.  By the time I am done, we'll be packing up again!  Although I am thinking we will let the movers do it this next time.  One year is not enough time to recooperate from this past move.  We are thinking we will go to Washington state.  We would be around an hours drive from a hospital with a Pulmonary Hypertension clinic, instead of three hours like we are here.  We shall see. Otherwise I have been staying up way too late and need to try to get to bed earlier!  I am a night owl and Todd is an early bird!  

Monday, June 17, 2013

Long time, no blog!

Today we went to the library and got new library cards for all the children.  Kate checked out probably thirty books!  I am glad that reading is a hobby of the children.  Karsten's isn't quite into reading yet, but I remember that Dane was the same way and now Dane is an avid reader too.

I tried to call Texas Children's Hospital today to set up an appointment to see the Pulmonary Hypertension specialist, Dr. Mallory.  Unfortunately, the cardiologist at BAMC hadn't faxed everything in yet, so I couldn't.  So I contacted the cardiologist's office and they took care of everything and I should be getting a call from Texas Children's here in the next couple of days.  We will have to drive to Houston, but that's ok.  Everything we do is for our experience and growth.

Todd is into week 2 of school for his CRNA.  Today was long for him, he said.  I am not worried about the next three years, all will be fine.  I remember when Todd was going to school full time, working full time (at one point he was even working two jobs!), and I was pregnant with Karsten.  Those were tough days.  I am not too worried about getting through the next three years. I believe the Lord prepares us for things ahead.  So while something may seem difficult now, don't just deal with it! Take it and run, because it might be the help you need!

We are enjoying the neighborhood pool.  It isn't real big, but not too small either  Seth loves to go in the pool with his life jacket on because he can move around on his own in the water.  He isn't a real quick mover, but he's learning!  Alex loves his scuba gear!  He is one great dolphin in the water!

Saturday, June 15, 2013

Texas food!

While my sister Angela and her husband Barrett were visiting our new place in Texas, they introduced me to the most popular grocery store in Texas, HEB. I think HEB has some sort of monopoly here, seeing as how the only other grocery store I have found is Wal-Mart. Anyways, look at the fun chips HEB sells! Texas shaped chips!  I was thinking Maryland shaped chips would just always break, especially somewhere along the north west side. 

Ok, so the chip on the left looks like Texas but the chip on the right looks like a ghost. So we are eating Texas shaped chips and Texas ghost chips! I love Texas!

Friday, June 7, 2013

A View From the Front Door

Whenever I miss the wonder family of neighbors on Hawkesbury Terrace, I just look at this picture and it's like looking out the old front door.  It was hard to say goodbye to Maryland.  Such good neighbors, a good ward family, and of course my sister and her family!

Saturday, May 25, 2013

Beautiful Sunsets

Wherever you go, you can always find something to like.  I think Alamogordo has some great sunsets.  Here are some snapshots of tonight's sunset with some awesome clouds forming over the mountains.

Friday, May 10, 2013

Fun at Grandma Stailey's!

Dane and Seth enjoying some fun time on the trampoline with their cousins Hunter and Edison.

Wednesday, April 10, 2013

Another visit with the cardiologist

We had our final visit with Dr. Berger last week.  Unfortunately the pressures in Seth's heart have not come down one bit!  It was a little disappointing to hear.  Fortunately Seth still shows no symptoms of Pulmonary Hypertension and his heart function looks good.  Ok, back up, I say Seth shows no symptoms but that is because we haven't seen anything different.  Seth does not play as hard and doesn't have the strength as a "normal" four year old, but the level that Seth does play at, we never see him tire or get short of breath.  Maybe it is the Pulmonary Hypertension that causes him not to have as much strength and energy or maybe it's low muscle tone.  Or maybe a combo of both!  Anyways, we discussed our next options which are an inhaled medication or IV medications.  We didn't go much into the IV meds as the doctor really wants to start him on the inhaled one.  Unfortunately since we are moving so soon, the doctor wants us to wait until we get to Texas and discuss options with our new cardiologist.  We did increase the sildenafil dose up to 4 mLs three times a day.  Part of me is like, if these meds aren't working, then why are we still taking them?  I know, patience.  I am sure we just have to find the right mix.  It would be nice to get off the Bosentan so we don't have to do monthly blood draws anymore.  

Tuesday, April 9, 2013

Spring Snowstorm

The first day of spring break, this is what we had! (March 25th) It melted off in a few days, but this was the only real accumulation of snow we had all winter, and it was the beginning of spring! Last time we will see snow for awhile!

Fame, Jr.

Here is Kate and Emily ready for performance! They have their hair all poofed and makeup ready! All they need is their costume! The girls did so well in their performances. I went to all three public performances, it was that good! Well, I may be biased.

You probably need to click on the photo to read the girls' bios.  Emily's is hilarious!

Thursday, January 24, 2013

Follow up with Dr. Berger

On Wednesday, Seth and I took a drive down to Children's National for a follow up visit with Dr. Berger for Seth's pulmonary hypertension. We were there for two hours, which was way shorter than I had expected. Seth had an EKG and an echo done. The echo showed the pressure in the pulmonary vein to be the same, maybe slightly less. The right ventricle looked smaller, though. This and the fact that Seth has way more energy and has an increased appetite was pleasing to the doctor. We are increasing Seth's meds now. He is working up to a max dose. I think we will hit max dosing on the bosentan next week. I don't think we are there with the sildenafil. Our next appointment will be at the first of April. That will be our last visit. We will be headed to Texas in May. Seth does real well during echos. He just lies there and let's them look at his heart all they want. I am glad he doesn't put up a fight. He cried a little when they had to stick the stickers all over his chest for the EKG. I think he was afraid they were going to poke him. He hates blood draws. We had to do two in one week because of a mixup. Unfortunately, Seth has to have his blood drawn every month. Poor baby.

Sunday, January 13, 2013

The Rose

Even though this song is usually thought about as romantic love, I believe it also represents other types of love.  For me it is love for a child who is sick, and finding the strength to go on.  It describes my anxiety and fears, and how if I don't trust in God, how miserable my life could be.  The last of the lyrics go:

Just remember in the winter
Far beneath the bitter snow
Lies the seed
That with the sun's love, in the spring
Becomes the rose.

I like to change the lyrics to read:  Lies the seed that with the Son's love, in the spring becomes the rose.

Through our Savior, Jesus Christ, we can heal, be at peace, and be happy again.

The following video is Westlife's music video version of the Rose.  I hope you enjoy!

Time to catch up.

Well, I think it is time to do a little catching up and to explain why Seth was in the hospital.  Last summer, Todd happened to lay his hand on Seth's chest while he was sleeping.  Having the medical background he has as a nurse taking care of heart patients, Todd was suspicious that Seth had an arrythmia, or an irregular heart beat.  We didn't think too much of it, but during a well child check I mention our finding to the pediatrician.  She listens to his heart and doesn't find anything unusual but has an EKG done anyways.  She doesn't see anything concerning but says she'll have the pediatric cardiologist look at it, because its protocol.  A couple of days later I find a message on my voice mail from the pediatrician that I needed to call her back.  Apparently the cardiologist found something on the EKG that was a little suspicious.  So I call the pediatrician back and she says the cardiologist wants us to come in to see him for another EKG as it appears there might be some right sided heart enlargement.  So, in September, we go in for our first cardiology appointment.  We have Seth all hooked up for another EKG and the doctor sees the same results.  He is not too concerned because there are no other things going on that would otherwise alert him to something more serious, but he has Seth undergo an echocardiogram just in case, or an ultrasound of the heart.  During the echo, it looks like the right side of Seth's heart is a little enlarged and the blood pressure from his heart to his lungs is a little higher than normal.  Sill, the doctor isn't really concerned. Seth is showing no signs that something is wrong, if in fact the pressures are truly high he would be having shortness of breathe, chest pains, blue lips and fingers, passing out.  Since we have nothing to compare this echo to, it is hard to tell exactly what is going on.  We decide to order any echo or cardiologist reports that Primary Children's Medical Center in Salt Lake City, Utah may have where Seth spent the first 3 1/2 months of his life.  We also decide to wait six months to do another echo so we can have another echo to compare with the first.
    Well, for reasons unknown, we had a hard time getting records from Primary Children's.  Looking back, I see it as a blessing.  Primary Children's had revived my request, but for some unknown reason, it was never sent.  So we finally got them sent, but by December, they still had not arrived in the cardiologist's office.  So the doctor suggests that we just come in and do another echo.  This appointment was scheduled for the 10th of December.  I honestly thought we would find nothing tat day and confirm that we were being overly cautious.  I sensed that the doctor felt this way too as we chit chatted before doing the echo.  During the echo it, the doctor discovered that the pressures in Seth's heart were even higher than before.  He showed us the blood flowing backwards a little from the per right chamber to the lower right chamber when the valves would open because the pressures in the pulmonary vein were so high.  I think he called it supra systemic.  It looks like Seth has Pulmonary Hypertension.  He was now very concerned.  He said that we needed to have a heart cath done in order to confirm and to see if there was anything wrong with the heart that would be causing this that he couldn't see on the echo.  We would have to go to Children's National Medical Center in Washington, D.C. for this.  The severity of everything probably didn't hit me until The day before his cath and while we waited during the procedure.
   Anyways, the next morning, it was a Tuesday, Children's National calls to set up a cath for that Friday, the 14th.  We had labs at Walter Reed the day before.  I chatted with our cardiologist while Seth's blood was drawn.  I asked if we'd be staying the night, as the nurse who did our pre-op mentioned a 50/50 chance of staying, but I knew he didn't have details of each heart cath.  The cardiologist say, Oh yes, most likely in the ICU.  That is when things started to really sink in.  The cardiologist also said he had already contacted the Pulmonary Hypertension specialist at Children's National, Dr. Berger, about Seth's case.  I was nothing less than impressed! Dr. Berger had stepped out of a conference to take the phone call and even though he was scheduled for a vacation, he would make sure he saw us after Seth's heart cath.  Wow!  It also added to the scariness of it all!
     Friday morning we arrived, got Seth changed into a hospital gown, did all the pre-op stuff, chatted with anesthesiology, and before we knew it, we were carrying Seth in to have his heart cath.  We stayed until he fell asleep, which was like way less than a minute.  He fought at first, but it wasn't for long.  Than we sat and waited.  It was a long wait.  And this wait was so unlike any other waits I have gone through.  Usually you are just sitting waiting for something to be taken out, or fixed and you know all will be ok.  This was hard as we were doing something to prove what we were afraid he had.  After about three hours, they were finally finished and the heart cath doc took us to a room to explain his findings.  Seth's pressures were very high, he was non reactive to treatments they try during the heart cath, the vasculature in his lungs looked abnormal, but his heart looked fine.  We had no questions as we didn't know what to ask yet.  We meet up with Seth as he is being wheeled to the CICU, cardiac intesive care unit. Seth is very angry as he beginning to wake up.  He is not liking all the tubes and wires all over him.  We have to sedate him to try and keep him settled. All of this seems too much for Seth's little body to handle and he goes into a pulmonary hypertension crisis.  He grabs all his wires on his chest and begins ripping them off, he is pale and has blue lips and fingers, he cries out and then passes out.  He comes to and passes out again. I press the nurse call button and Todd just goes out in the hall to get someone.  Next thing, our room is bustling with activity as they are trying to sedate Seth even more to get him to relax and get his heart rate down.  They finally get him stable.  Todd was in the midst of all the flurry, this is what he does, just not on kids.  He works with adults who are stable enough to come out of the ICU, but not ready for the regular floor.  I just remember thinking, this is what I have to deal with?  I don't think I can do this!  It was pretty scary.  Seth stayed in the CICU three nights and on Monday morning, he was transferred to the Heart/Kidney Floor.  We had no more issues with Seth during our hospital stay.  We couldn't leave the hospital until we had two medications, sildenifil and bosentan, The bosentan is harder to get. Google those two meds and see how much they cost.  Yes, I am thankful to be in the mlitary and have that covered.  Todd and Seth did not come home from the hospital until Thursday evening.  The bosentan was delivered Thursday morning and we had the sildenafil delivered Friday morning. Oh yes, google sildenifil and see what Seth is taking.  Yes, it was used to treat pulmonary hypertension first, and they realized what one of the side effects was.  Now it is prescribed for other usages.  Anyways, we go back to see Dr. Berger next week.  I am hoping and praying that we can keep the pressures in Seth's heart controlled with medications.   I hope next week brings good news.