Saturday, April 30, 2011

Today's Update

I visited Veronica today prior to coming to work my 3pm shift.  She was resting comfortably on her belly.  The nurse reported that she was doing well.  She is being weaned off the ventilator and will likely be extubated by the end of the day.  She will then go back to CPAP, which is used to deliver constant air pressure into the nose.  It is less invasive than the ventilator and is much gentler on the lungs.  This is a good thing, but I do worry that she will have to work harder to breath.  The nurses and doctors will watch her closely to monitor her oxygen level and adjust the CPAP settings - but I just want her to be as comfortable as possible.  I am all about working hard to get results, but its hard to apply this concept to such a small baby.  Why should she have to work hard at anything at this point in her young life?  Ok, ok, ok - enough feeling sorry for myself.  We are so grateful Veronica is doing as well as she is and proud of what a fighter she continues to be.   

Here is a picture from yesterday.  I know it's not the best in terms of quality, but isn't she one of the cutest babies you have ever seen?  Just look at her little hands.....precious!


Friday, April 29, 2011

She Opened Her Eyes!!

I know the opening of the eyes is generally not considered a developmental milestone for infants, or a moment that is ever celebrated by parents.  But for Veronica, whose eyes had been fused shut up until today, it was a moment to celebrate.  What a wonderful thing it was to see her with her eyes open.  Our beautiful baby girl!  We’ll try to get a picture up soon. 

Veronica had a good day today.  She remains intubated but the settings on the ventilator are very low, meaning she doesn’t require as much breathing assistance as those with higher settings.  As much as I did not want her back on the ventilator, she did seem more comfortable which of course provided some relief to me and Andrew. 

Early this morning, the doctor completed the lumbar puncture (spinal tap) and collected the necessary spinal fluid.  The results will come back in a day or two but the doctor said the fluid was clear, meaning it’s unlikely that there is any infection.  Another positive sign!!

Thursday, April 28, 2011

Back to Work

I returned to work today which just felt wrong in so many ways.  I would much prefer to spend my days going back and forth to the NICU.  Unfortunately, the reality is that I must work.  And I would certainly prefer to take my maternity leave when Veronica comes home as opposed to when she is in the hospital, being cared for by so many competent and caring people. 

Prior to going in to work today, I stopped at the NICU for a brief visit.  Veronica looked stable and I was told she had a good night.  Andrew would visit a few hours later and was given the same impression.  Unfortunately, Veronica had some episodes after Andrew left and they needed to re-intubate her.  So she is back on a ventilator.  We have been nearly expecting this for the past few days and we are told it is nothing to be overly concerned about.  The hope is that they will extubate her tomorrow.  There is some comfort in knowing that being on the ventilator makes it much easier for Veronica to breath.  Being so little and so immature, it is quite a challenge for her to breath at times.  So the ventilator will give her some reprieve and she can get some comfortable rest.  And it gives us more of an opportunity to see her face, which I love.  When she isn’t on the ventilator, she is on CPAP (continuous positive airway pressure) which is given through an apparatus attached to her nose.  It takes up most of the top half of her face as you can probably see in the recent pictures. 

After work, I returned to the NICU and as soon as I arrived, I found Veronica’s isolette open and a doctor standing over her in a sterile gown and mask.  I had a suspicion of what the doctor was about to do (because I was told earlier), but it was still quite unnerving to see.  I was then asked to leave because the doctor was going to do a spinal tap, to draw fluid from Veronica’s spinal column in order to test for meningitis.  I’m not certain why I couldn’t be there for the procedure but I imagine it’s because it’s a difficult site to see, particularly for a parent.  I was informed that she was given morphine to ease the pain, something I took great comfort in knowing.  Unfortunately, they made three attempts to get the spinal fluid but they were unsuccessful.  They will try again in the morning.  We have been told that this is just precautionary, and there is no suspicion at this point that she has meningitis.  We should have the results in a few days.

The good news is that yesterday’s ultrasound found no evidence of a brain bleed.  This is especially good as any possibility of a brain bleed is essentially eliminated after the first week of life.  Brain bleeds are very common for micro preemies so Veronica is in great shape in this department. 

The more I read about micro preemies, the more I am amazed at how well Veronica is doing.  I try to remember that during the difficult moments, but that of course is not always easy to do.    

Wednesday, April 27, 2011

Ups and downs

Veronica had a difficult morning and it was painful for me to see, although the doctors assured me that her behaviors were typical for her young age. 

When I arrived, the nurse told me that Veronica had been having frequent "episodes" when her heart rate would drop significantly.  At the request of the doctors, she drew a blood gas and whatever the results were prompted the doctors to immediately meet to discuss Veronica's status (rounds).  During rounds, I stayed by Veronica's isolette, and whenever her heart rate would drop, the machine started beeping.  A nurse would then come and tap Veronica or reposition her to get her heart rate back up.  This happened several times within a short period of time.  Finally, the nurse requested the doctor.  So rounds were interrupted - and the attending physician, the fellow, several residents and two additional nurses came to the isolette.  This was difficult to see - so many people huddled around my tiny baby girl.  I tried not to cry but the tears were inevitable.  The attending physician told me not to worry.  He assured me that Veronica was still in a better place than most 24 weekers.  I knew he was right but its still so hard to see.  He discussed the likelihood that she would need to be re-intubated and put back on the ventilator.  We knew this was a possibility all along.  Most babies her age are on a ventilator for days, if not weeks.  We have been thankful that she was only on the ventilator for one day.  The doctor also pointed out that most significant problems occur during the first week of life - and we are on day 9.  Again I was reminded that there will continue to be good days as well as bad ones. 

Shortly after that Veronica received a platelet transfusion which she seemed to help significantly.  And as I write this update, she still has not been intubated which we are happy about.

She also had an ultrasound of her brain to rule out any bleeding on the brain, something all preemies, particularly micro preemies, are at risk for.  We should get the results tomorrow. 

Stay tuned....

Tuesday, April 26, 2011

Veronica - 1 week old

NICU Visits

Andrew and I have been splitting the visits to the NICU, which is about a 30 minute drive from our home.  I tend to go in the morning, after rush hour, and Andrew goes in the evening, after the shift change.  We each stay for a few hours which gives us an opportunity to see how Veronica is doing over a period of time.  It also allows for us to get to know the nurses better.  The nurses, by the way, have been phenomenal.  They are gentle and patient, not only with Veronica, but with us as well.  The same with the doctors.  Even prior to Veronica's birth one of the doctors visited me almost daily while I was on bed rest to see if I had any questions or concerns.  We are so grateful that Veronica is receiving the highest level of care. 

My visit with Veronica today was uneventful, which is a good thing.  She remains stable.  Her heart rate continues to drop periodically but it often comes right back up again without any intervention from the nurse - this is a good sign.  While we are not able to hold her, and won't be able to for several more weeks, we are allowed to touch her with sterile gloves.  Today they even allowed me to take her temperature and change her diaper.  Doing so really makes a difference in terms of feeling like a part of the care giving team. 

Veronica continues to gain weight and we can really see it.  She gained 40 more grams which is just over an ounce.  She was 1 lb, 4 oz at birth and is now 1 lb, 8 oz.   Its amazing what a difference 4 oz makes.  Hopefully, we will see consistent weight gain over the coming weeks and months.   

Monday, April 25, 2011

Get Well Cards from Liesl, Theodore, Linus and Sebastian

A Better Day

Easter Sunday was a difficult day for us.  Veronica's infection caused her to have frequent "bradys", or a drop in her normal heart rate that often requires intervention from the nurses.  She also had numerous "desats", when her oxygen saturation level would fall.  The doctors deliberated about the possibility of intubating her, but ultimately decided it wasn't necessary at this point.  When we went to sleep, we had the phone close by but prayed we wouldn't receive any calls in the middle of the night.

Today is a completely different day.  While Veronica still has an infection (for which she is being treated) she appears to be more stable.  The bradys and desats have decreased.  She had a stool (always a good sign!) and they have take her off all of the bililights, which were being used to treat her jaundice.  This also means that she no longer needs to wear a special shield over her eyes and allows us to see more of her beautiful face.  She continues to gain weight and is currently 650 grams, up from 571 grams at birth.  And the best news of all, as far as I am concerned, is that she is able to resume feedings - she will be getting 2 ccs of breast milk every three hours.  The milk will go through a tube in her mouth that goes directly to her stomach.  Its not a lot of milk, but every little bit of breast milk that we can get into her counts.  It will be weeks, if not months before Veronica can nurse or even drink from a bottle.  But this is a step in the right direction as  the benefits of breast milk for preemies are astounding.

We are all cautiously optimistic.  We know there will be more setbacks along the way.  But we are so thankful for the good days and pray that the good days consistently outnumber the more challenging ones. 


April 18, 2011

April 18, 2011 was a day that changed our lives forever.  Our sixth child, Veronica Katherine, was born at 1:55am and minutes later she was rushed to the Neonatal Intensive Care Unit (NICU).  For hours, she remained in the NICU while Andrew and I waited in the delivery room, anxiously awaiting news of how she was doing. 

Six days earlier, I was admitted to the George Washington University Hospital in preterm labor.  I was only 23 weeks and 5 days pregnant but my membranes had ruptured prematurely.  We were told at that point if we delivered, there was only a small chance that she would survive.  And if she did survive, it was likely that she would have significant developmental issues.  24 weeks gestation is generally considered the age of viability – so if the baby remained in the womb for at least another two days, the chance of survival would improve significantly.  Fortunately, medication was able to stop the labor and I was given steroid shots to help mature Veronica’s lungs.  So we watched, waited and prayed that she would remain inside for at least several more weeks.  But Veronica had other plans. 

The birth itself was emotionally traumatic but physically, the easiest delivery I have ever had as my five prior deliveries were all via c-section.  Veronica came out quickly and seemingly effortlessly.  I called for the nurses at 1:41am, called Andrew at 1:42am and delivered Veronica at 1:55am.     

After waiting for hours in the labor and delivery room, one of the NICU doctors came to speak with us but much of what she said is a complete blur.  I was overwhelmed with all that was happening and I was still in shock about the birth.  What I did know was that Veronica was alive but that she would have a long road ahead of her.  She would not be able to leave the hospital for at least several months, if ever.

The first time I saw Veronica in the NICU, I wept uncontrollably.  How could this have happened?  What did I do wrong?  There were so many emotions I wondered how I would ever have the strength to parent a micro preemie in the NICU. 

Over the next hours and days, we learned of some of the significant complications for which Veronica is at risk: respiratory distress syndrome, retinopathy of prematurity, necrotizing entercolotis, intraventricular hemorrhage.  We also learned that her chance of survival for day 1 was 50% but for each subsequent day, the chances increase several percentage points.  We knew that everyday she was with us would be a significant one. 

Over those first few days, we were told that Veronica was doing as well as she could be.  Her breathing required assistance but she was only on a ventilator for one day, a very positive sign for a 24 week preemie.  Her ultrasound of the brain showed no signs of hemorrhage, another very good sign.  She received almost daily blood transfusions but we were assured this was not uncommon for a preemie her age.  We were also warned that the first 48 – 72 hours are generally considered the honeymoon period.  After that, preemies start to have setbacks and challenges.  We tried to prepare ourselves for this, but nothing could have prepared me for the call that came at 12:13am, April 24.

One of the doctor’s called to inform us that it appeared that Veronica had developed an infection.  Her oxygen levels had continued to decrease and the doctor noted the possibility that they would need to intubate her again and put her on the ventilator.  The news certainly wasn’t the worst, but the fact that the call came in the middle of the night caused my heart to race, I was so sure they were calling to inform us that Veronica had passed on.  Those few minutes were the worst of my life.  I then realized that this is what our life is going to be like for at least the next few months, ups and downs, progress and setbacks.