Friday, May 31, 2013

Day 5

Well, today is day 5 and we're still hanging in there.  Crew finally lost a little weight last night . . . hurray he's down by one ounce.  The weight loss should pick up as he continues to soak his diapers.  By the way, his urine catheter came out and he's peeing on his own.  He's still on the Jet ventilator with his Oxygen levels around 45%.  The Nitric Oxide is almost weaned off.  He hasn't had to have his chest tubes replaced for over 48 hours now . . . which is a great improvement.  They are still draining lymphatic fluid, but that fluid is better out than in.  He opened one of his little eyes this morning when his mommy was helping to change his diaper.  This was a first since he was born.  They're not sedating him as heavily the past several hours, allowing him to move around just a little bit.  Hopefully in the next day or two they can start to wean the medications that are keeping his heart rate down, to see if he can hold it on his own.  Keep those prayers coming!

Terrel and Gretchen are starting to allow a few close family and friends to visit for short intervals.  Just text them before you come.  They are excited to show off their new little one.

Thursday, May 30, 2013

Baby Shower

We've decided to postpone the baby shower for now.  When Crew is a little more stable, we will try to re-plan and figure out another date.  Thank you all for your continued support.

Day 4

The night shift went well, except for one little 20-30 minute episode of SVT.  A couple doses of Adenosine and he was back on track.  Crew's chest x-ray is stable this morning, and his chest tubes are still draining.  He seems to be comfortable on the Jet Ventilator . . .  his FiO2(amount of Oxygen he's getting) has been around 40-50%.  Dr. Womack is Crew's Cardiologist.  He was in this morning and explained that sometimes it takes a good "smack"(meaning medications and adjustments) to get the heart beating correctly, and then the lungs and the kidneys will soon follow.  He is peeing twice as much as yesterday, which is a huge improvement. His weight is up by another 3 ounces today, but this is to be expected until his kidneys can catch up with all the fluid.  The doctors are discussing the idea of starting him on diuretics to help him pee off even more fluid.  He is tolerating position changes and we were able to change the linens underneath him.  We are happy with the progress he is making, but he is far from what would be considered medically stable.  Crew gets the most attention of all the babies in the NICU . . .  a sign that he is the sickest one in there.  He's a strong little guy, but he still needs lots and lots of prayers.




His little ear is swollen and full of fluid.


This is the Jet Ventilator

Heart rate is 120,  Oxygen Saturation 96  Blood Pressure 45/28 

Wednesday, May 29, 2013

Procedures

Crew had a lot of procedures today.  Because of constant leaking and plugging, he had both chest tubes replaced with larger tubes.  His little lungs are fragile and keep collapsing (pneumothorax) in areas making it hard for him to ventilate properly.  The chest tubes help to relieve the air and fluid that have leaked into the pleural space, allowing his lungs to re-inflate. They also put him on a new ventilator called the Jet.   This ventilator is specifically designed for babies with chest tubes and reoccurring pneumothoraces. He seems to be more comfortable with this new vent, and is oxygenating well.

He also received a new arterial line . . . the old one wasn't working well.  And, a new IV line for blood products.  He tolerated all of these procedures and changes as well as can be expected.    His urine output is slowly increasing . . .  he has a lot of catching up to do.  And, his heart rate has been within normal limits for over 24 hours now . . . hurray!!

The doctors, nurses and respiratory therapists are going to try not to bug him tonight, so that he can get some rest.  Hopefully his daddy and mommy can get some rest too.

Thank you all for your prayers!!




A good day so far

Crew is having a good day so far today.  His oxygen requirements are down to 39% . . . yeah!!  Chest tubes are still working well.  HR has been in a normal sinus rhythm around 115 since 9pm last night . . . keeping our fingers crossed.  He's putting out a bit more urine today, but still has a lot to go.  Poor little guy has gained over a pound of fluid since he was born.  His weight today was 5 pounds 10 ounces.  So, he probably has about 2 pounds of extra fluid on board right now.  Needless to say, he's puffing up like a balloon.  But, he'll soon pee all that fluid off.  Keep your prayers coming!

His proud papa spends hours at his bed side.



Please feel free to post your questions and comments here and we will do our best to answer.

Tuesday, May 28, 2013

Still Fighting

Crew is just a little over 48 hours old now.  He is still fighting!  His heart rate continues to fluctuate between a normal sinus rhythm and a rapid tachycardia. The doctors are still working hard to figure out the right medication combination that will keep his heart rate in a normal range.  His lungs are still doing well.  Yesterday, he received Surfactant (a liquid substance) to assist with his lung compliance, which allowed the medical staff to decrease the amount of oxygen he is receiving.  He still has two chest tubes.  They actually replaced one of them today, but they seem to be draining less fluid . . . which is a good thing.  His urine output has slowed down, but the doctors think this is just temporary as all his kidney function tests look normal.  He is receiving blood products to replace all the blood they are removing for tests. He is still heavily sedated so that he doesn't feel the pain of all the tubes and pokes.  The roller coaster ride of the NICU has just begun, but we are in it for the ride.

Keep little Crew in your thoughts and prayers . . . he has a very long road ahead of him.

Sunday, May 26, 2013

The Birth Story

For those of you who don't know, last Friday morning Gretchen was having trouble feeling the baby move. She went to the doctor to be checked and he found that the baby had a very rapid heart rate (SVT).  The doctor did a quick ultrasound and then admitted her to Labor and Delivery for observation.  The high risk doctors and the cardiologists did scans and determined that the baby was in "SVT" and had developed extra fluid around his heart, lungs and in his abdomen.  They decided to try to medically Cardio-vert (slow his heart rate) down while he was still in the womb.  The hope was that he would cardio-vert and then re-absorb the fluid and grow to full term.  They started meds (digoxin) on Friday evening.  Saturday morning his SVT continued and the fluid retention was worsening so they added an additional med (Flecainide).  Sunday morning he was still in SVT and the fluid retention was even worse.  They increased the meds again and  gave an extra dose of the Flecainide.  Approximately an hour later, his heart rate began to fall into a normal rhythm for several minutes at a time . . . very promising.  By 4:00pm he'd had a run of about 40 minutes with a normal rhythm . . . again good news.  Then suddenly he began to have double beats and decelerations in his heart rate (bigeminy). The high risk doctor, Gretchen's OB, and the cardiologist decided that it was time to throw in the towel and get him delivered as quickly as possible.  

Crew Wesley Miller was delivered via emergency C-section at 5:22pm on May 26th.  He is adorable.  He is puffy from all the extra fluid that his body is holding on to.  He weighed 4 pounds 7 ounces and is 15 3/4 inches long.  He was admitted to the NICU at St.Lukes and is in very critical condition.  He is medically sedated and dependent on the High Frequency Oscillator ventilator (HFOV) and Nitric Oxide to breathe.  He has 2 chest tubes draining the extra fluid from his lungs.  He has a urine catheter and is making great urine.  His blood pressure is stable.  His temperature is stable.  He has an intra-venous line in his umbilical cord for fluids.  He has an IV catheter in one of his arteries to monitor his blood pressure an allow the nurses to obtain labs.  He is not being fed yet, but Gretchen is pumping for him.   However, his heart rate remains high.  The doctors are working diligently on this matter and trying to make the best decisions for Crew and his situation.  They need to get his heart rate into a normal sinus rhythm in order for him to recover and to stop the accumulation of extra fluid.  He is very fragile and it is going to be a long journey. Terrel and Gretchen appreciate all of your love and concern, but need this time to be alone with their baby.  They need time to bond and emotionally recover.  

We will try to post updates as often as possible.