A Likely Diagnosis

WARNING . . . this is a long post!

The Neonatologist sat down with all of us this afternoon to explain the latest Cardiology report.  She told us that according to the last few EKG's,  it appears that Crew has a syndrome called Wolff-Parkinson-White (WPW). This diagnosis explains the SVT and the arrhythmia's that Crew has been experiencing the past few days. WPW is a heart condition in which there is an abnormal (extra) electrical pathway in the heart.  Normally electrical signals in the heart go through a certain pathway that helps the heart beat regularly. The wiring of the heart prevents extra beats from occurring and keeps the next beat from happening too soon.  People with WPW have an extra pathway that this electrical signal may choose to take causing a very rapid heart rate (SVT).  This syndrome is treatable with medication (beta blockers).  It is also mostly curable with catheter ablation or burning/freezing the extra pathway.  Crew is way too little and young for an ablation, so he will be treated with medications for now. He has been on an Esmolol(beta blocker) drip since a few days of life that is keeping the SVT under control, so no extra treatment is needed at this time. This syndrome was diagnosed by the Cardiologist who is covering the weekend.  It wasn't detected on his first few EKG's most likely because of all the medication he was being administered at the time. Terrel and Gretchen want to speak with Crew's main Cardiologist when he gets back into town, to confirm the diagnosis. 

So, for now . . . we are in a holding pattern.  We are waiting for his stomach to heal.  Meanwhile, he has to remain on the ventilator.  And, because the chest tubes are still draining they will remain.  His lungs have been sensitive to fluid changes and are requiring frequent ventilator changes.  He is keeping all the medical staff on their toes. And, we are all developing ulcers from stress and worry.  Typically, premies are extubated (taken off the ventilator) and placed on CPaP (continuous positive airway pressure).  CPaP is a device that pushes oxygenated air into trachea, but some of that air will inevitably sneak through the esophagus and into the stomach.  We don't want any extra air inflating his stomach and putting pressure on his repair site.  So, when he comes off the ventilator, his lungs will need to be strong enough to be supported by a nasal cannula or no support at all. 

Once his stomach has healed . . . they will test it on Tuesday with fluoroscopy(continuous X-ray) . . . feedings can begin.  Feeding Crew will be a very slow process.  He will most likely need to be fed with a special formula at first,  then gradually transition to breast milk. They will be watching him very carefully to make sure his stomach and intestines are digesting properly.

Crew weighs  4 pounds 11 ounces today, down 40 grams from yesterday.  He's still peeing like a champ.  And, he also still remains on a Morphine drip for pain.  

This is a lot of information for one day . . . sorry.  Crew's dad and mom are doing their best to stay strong and positive . . .  despite all his set-backs.  Your prayers and support are helping all of us get through this stressful time . . . Thank you!!

He's still a very critical little boy.

Day 12 . . . post op day 3

Well, he can't give us one day without a little scare.  Poor guy . . . it's really not his fault.  Today Crew's work of breathing became labored and he started to set off all his alarms . . . right when grandma and grandpa were visiting.  The Docs and NNP's were called in to the room to problem shoot.  They decided that something just wasn't right with his ETT(breathing tube).  So, they had to bite the bullet and replace it on the spot.  They had been trying to avoid doing this, for fear that his little belly might get too full of air in the process.  But, everything went smoothly.  They changed out this size 2.5 ETT for a larger size 3.0 ETT.  When they pulled the old one out . . . there was a nasty old plug on the end of the tube that was basically occluding it.  His new tube is working like a charm.  The X-ray they took right after replacing it, looked better than it has in several days.  His belly did get a little extra air in the process, but they were able to aspirate it quickly back out. Hopefully this didn't cause any stretching or irritation to the suture line.

I think his poor mama is tapped out.  She needs a couple days without any major stressful episodes.  I almost forgot . . . last night he developed another pneumothorax.  His heart rate went up and oxygen saturations went down, and his work of breathing increased.  The doctor was able to aspirate back on the chest tube to relieve the air from his chest, and then he quickly returned to baseline.

On a positive note, he's as cute as ever.  He is still opening his eyes to peek when we ask him . . . bless his little heart.  He lost 5 grams last night . . . not much, but I'm glad he didn't gain.  He's still peeing well and soaking his diapers.  And, with just a little tiny bit of Dopamine, his blood pressure is holding.

Doing well today

He's doing a little better this afternoon.  Tolerating the change in Morphine so far and resting well between cares.  They removed his urine catheter, so it's back to diaper changes.  His heart rate is stable and his B/P is holding.  The surgeon is pleased with how things look so far.  We're staying positive and keeping the faith.

Looking through the isolette

Tiny little toes

Holding his favorite aunt's hand

Sweet little fingers

This is his incision.  I took this photo during the dressing change.

Post-op day 2

The night shift was uneventful.  His weight is up by 3 ounces today . . . a good thing for now.  He must have finally held on to some of the fluid boluses he received yesterday.  His Oxygen requirements (FiO2) are up this morning to 48%.  Some of this may be from the extra fluid . . . we can't control where it goes.  But, this mornings chest x-ray showed an area on his right upper lobe that was collapsed down a bit.  They are going to turn him slightly to his left side to help open up and drain the right side.  His little lungs are so fragile and sensitive to any change.  

They're discussing the idea of stopping the Dopamine drip.  His blood pressure just needed a bump last night and then they were able to wean it way down.  He still has his urine catheter and he continues to put out a lot.  They are going to start weaning his Morphine drip again. The doctors want him to start waking up a bit more, so hopefully by the weekend they can address the idea of removing his ventilator.  He will need to be alert and able to do all the breathing on his own.  He will also need a clear x-ray.  The sooner they can get his breathing tube out . . . the better.   Any time there is a tube in the lungs, there is the risk for infection.  He does not need to get pneumonia right now.  

His stomach seems to be healing . . .  as far as we can tell.  There really is no way of knowing right now.  Like I said earlier, they will check it with an X-ray after 7 days.  However, we can assess the color and size of his abdomen, as well as how firm or soft it is.  And, the nurses listen for bowel sounds several times a day.  I forgot to ask if he has any . . .  but I'll check myself when I go visit in a few minutes.  

He's far from being out of the woods.  We will be on pins and needles until he's safely off the ventilator and on full feeds.  I'll post more photos this afternoon.  Keep our little guy in your thoughts, and those prayers coming.

Opening his eyes

This video was taken around lunch time today.  Terrel was talking to Crew and asked him to open his eyes . . . he popped them open right on command as if he knew exactly what his daddy said.  It was so precious.  The little cloth that is covering his eyes is a "cuddle cloth". Daddy and mommy wear them next to their skin for several hours and then place them near the baby's face.  Babies have a strong sense of smell and this helps them get to know their mom and dad's comforting scent.

Crew is waking a little from the surgery, but the nurses are giving him a lot of pain medication so that he doesn't feel any pain.  The surgeon came in today and changed the dressing on his incision site.  She said everything looks good for now.  His incision is about 3 to 4 inches long on his right abdomen extending across his belly button.  The doctors started him on a Dopamine drip this afternoon to help keep his blood pressure in a good range.  He continues to pee a ton.  He received about 4 boluses of normal saline, cryoprecipitate and fresh frozen plasma today in order to make up for the fluid loss in urine.  His heart rate is holding in a normal sinus rhythm . . . keep your fingers crossed. And, those darn chest tubes are still draining.   It was a very busy day, full of ups and downs, but Crew is a fighter and he's battling like a champ!

We can't thank you enough for all of your love and support.

This is a drawing of Crew's stomach that the doctor did to show the area where his perforation occurred. 

Holding daddy's hand

A little update for now

Crew made it through the night.  He is still very, very critical.  His weight is down to 4 pounds 9 ounces . . . he lost another 7 ounces overnight.  This is good . . . and bad.  Now that he is post-op, he needs to retain enough fluid volume to keep his blood pressure and perfusion up.  He has been receiving a lot of extra fluid through his IV in order to keep up with the amount of urine he is peeing off.  It's a critical balancing act.  The doctors are discussing adding the drug Dopamine to help with his blood pressure.

He remains on the conventional vent with his chest tubes.  His FiO2 needs have been around 40%.  He still has a very small breathing tube and is very sensitive to any changes in pressure.  He is getting Morphine as needed for pain . . . along with his Morphine drip.  And, he also receives Versed to help him rest.  We are so thankful that he is resting well and allowing his body to heal.  The next 48 hours will be a very critical time as he continues to recover from surgery and his previous insults.

A Really, Really Hard Day!

Well, we had a couple of really good days in a row . . . but today it all came crashing down like a ton of bricks.  I have a lot of information to share,  but will try to summarize the best I can for tonight.  

This afternoon it was apparent that our little Crew was in some sort of pain.  He was crying and kicking his little legs, and acting differently than normal.  His abdomen was also more firm and distended than it had been the day before.  Fortunately the nurses and respiratory therapists picked up on these subtle signs and reported them to the doctor.  They took this seriously and obtained an x-ray, where they soon discovered "free air" in his abdomen . . . a very emergent situation.  This basically means that air had escaped from somewhere in his digestive tract and was filling up his abdominal cavity.  The surgeons were called  to his bedside where he was operated on immediately.  The surgeons found a hole (perforation) in his stomach . . . a very rare area for perforation.  They believe this perforation is a result of being so critically ill and having decreased blood flow(ischemia) to that area at some time within the past several days.  They were able to remove the damaged section of his stomach and then carefully and meticulously sew the edges back together.  He tolerated the surgery fairly well, given the circumstances.   Needless to say, he is extremely critical once again.  He is receiving a post operative blood transfusion.  He is at high risk for infection and has been started on numerous antibiotics.  The surgeons have placed a tube through his nose and into his stomach to help alleviate any air from getting through.  He is heavily medicated and sedated, and will be for some time.  He is still on the conventional ventilator and oxygenating well.  He still has his chest tubes.   His heart rate is normal for the time being . . . they had to stop the Sotalol because it was an oral medication.  His blood pressure is holding, and he is still peeing. 

The next several days are going to be critical.  We need this surgical repair to heal without complication.  If the repair holds without interruption, the plan is to test it in one week.  They will take him to fluroscopy(a continuous x-ray) and place dye in his stomach to rule out any leakage.  Then, if things look like they are healed properly they might be able to attempt to cautiously feed him. 

Once again, we ask you to remember our little "Crew baby" in your prayers.  He and his parents need them now more than ever.  We have faith that he will pull through this, and that he is strong enough to recover without any lasting effects.  We need the strength from your faith and prayers too!

If you have questions or comments, please send them to me at this time (jenlschow@gmail.com).  Terrel and Gretchen are  overwhelmed with the information they are receiving from the doctors and nurses, and are trying to focus all their attention on their son at this time.  They are so appreciative of all of your support, but understandably very shaken right now.

Just before surgery