Our First Week

Today is July 29 and tomorrow will be Cooper and Kinley's one week birthday!  A lot has happened their first week of life so I will try to include all of the major events but focus on the most recent.  I am amazed at what I have learned so far and know that this is only the beginning.  I know I use the term "blessed" excessively but I struggle to find a better word.  That being said, we are incredibly blessed to be at the #2 NICU in the nation and the doctors and nurses here are wonderful.  Their patience with our questions is endless and they make every effort to keep us informed and as involved as possible.  They refer to us as part of "the team" and one of the first questions our doctor asked  me this morning during rounds was "How do they look to you today?".  Though I am far from becoming any kind of expert, it is somewhat comforting to have a little bit of an idea of what is being talked about when all of our NICU team are discussing Cooper and Kinley's plan of care.  The NICU is set up very nicely...each baby has their own room and the twins are in one of the twin "suites" together.  Their is a couch/bed and 2 recliner chairs for us to hang out and sleep on if we choose; however, I quickly learned it is very difficult to get any sleep in the NICU and am staying in a hotel room across from the hospital as I write this.  We are  allowed to have visitors and love to have people come by as it helps break up our day and we love the support.  Just make sure you let us know you're coming so we can make sure we're there!  A HUGE thank you to those who have come to visit us so far, it means more than we can ever express!!

The Basics

At this point, we do not feel quite comfortable posting pictures of the babies, but I promise they will come soon. In the meantime, I am including the above picture of their diaper so you can kind of get an idea of their size! 

As soon as Cooper and Kinley were born they were were intubated with a breathing tube and given a dose of surfactant to help their lungs mature a little bit more.  Within a few hours, their breathing tubes were removed and they were placed on CPAP (Continuous Positive Airway Pressure).  Basically this means they are breathing on their own with support. They have a set of nasal prongs that deliver oxygen into their lungs.  They are able to regulate the percent of oxygen being delivered with the goal being 21% oxygen, which is the same as room air.  As of today (July 29), both are at 21% (however sometimes this fluctuates).  

The As and Bs of Breathing

One of the major things they pay attention to in the NICU is As and Bs which stands for Apnea and Bradycardia.  Apnea is when there is a period when the baby stops breathing.  As a result, the blood oxygen levels drop, as well as the heart rate which is the bradycardia.  As and Bs are very common in preemies, and most of the time they self-correct, but we do not like them!  If they do not self correct, they require manual stimulation (a little spanking!) to remind them to breathe again.  So far, the babies have had minimal As and Bs, but today Kinley has been misbehaving!  This morning she had a period of repeated As and Bs that required vigorous stimulation to resolve.  As you can imagine, this was very stressful and each time the alarm went off I think I stopped breathing as well.  Anytime a baby has any complications in the NICU the first thing they suspect is infection or sepsis.  The doctor's ordered a sepsis workup which included a CBC as well as a spinal tap to rule out meningitis.  When I first heard this I was quite concerned, but she didn't cry and slept through the whole thing.  Drawing her blood was more painful! She has also started a round of prophylactic antibiotics just to be safe. We have been told from the beginning that the NICU journey is full of ups and downs and today was our first big dip.  As I sit here writing this, Kinley has seemed to have calmed down and has had minimal As and Bs this afternoon.  Her preliminary white blood cell count is normal so we are hoping she just had a "bad day".  We will get full results of all of the tests that were ran today in about 48 hours, but as please say an extra prayer for Kinley.

Two Hearts...

Both Kinley and Cooper have Patent Ductus Arteriosus or PDA.  While in utero babies get oxygen from the placenta, not the lungs...the ductus arteriosus (DA) is a normal blood vessel that connects the aorta and pulmonary artery to carry blood away from the heart directly to the body in utero.  When babies are born, this duct normally closes and blood is then sent through the lungs before being sent the the aorta and then to the rest of the body.  With PDA, this duct does not close and oxygenated blood mixes with un-oxygenated blood in the pulmonary artery which can put extra stress on the heart.  A heart murmur is a symptom of this and it is diagnosed via ultrasound.  Again, this is not uncommon in preemies.  Most of the time they will close on their own with time, but if it doesn't they can use medication to close it or in the worst case scenario, surgery.  Both babies have an open duct, but they are pretty sure Cooper's is closing.  Kinley's ultrasound also showed an open duct, but also a possible narrowing of the aorta.  At this point, they are not too concerned with this, but will repeat the ultrasound on Monday to see if the duct has closed any and re-assess the aorta.  

Breakfast, Lunch, and Dinner

When the babies were first born, both had IV lines placed in their umbilical cord stump to receive fluids.  Cooper still has his in his belly button, but Kinley's has been removed and she has a PICC line that goes from her arm to a large vein near the heart.  Until they re-assess her heart on Monday, Kinley will not "eat" any breast milk but will continue to receive a mixture of fluids and nutrients through her line.  Cooper started trophic feeds (beginning feeds of very small amounts), through a feeding tube in the mouth, on Tuesday and has since graduated to real feeds.  He is up to 9 cc's (mLs) per feeding every 3 hours.  So far he is tolerating these well.  Both are urinating regularly and having good bowel movements, so for that we are also grateful.  

Kangaroo Therapy

One of the questions I get asked most frequently is if I have gotten to hold the babies yet.  Kangaroo Therapy is skin-to-skin contact with the babies where they lay on their tummy on our chest and heart.  I can touch them whenever I want, and I have gotten to do some Kangaroo Therapy with Kinley.  Because Cooper still has a line in his belly button, I will wait to hold him until it is removed.  The first time holding Kinley was stressful, but wonderful at the same time.  She was very content laying across Mommy's chest and slept the whole time!  Because she has been having more As and Bs we will wait until things level out before we get her out again.  Poor Brian has not had a chance to hold them yet, but it will be like Christmas morning when he does!  

Holding Up?

One of the other most frequent questions we get asked is how we are holding up.  For the most part, we are doing well.  Today was definitely the hardest thus far, but tomorrow is a new day!  Brian has been my rock through this whole thing.  He has been incredibly strong and able to calm me down and keep me grounded when things get bumpy.  I am also amazed with how well Rachel is doing.  While she is of course, very concerned and still has the normal hormone fluctuations, she is incredibly strong!  We are so lucky Caleb is such a laid back kid...he is totally going with the flow!  He has not yet met his brother and sister, but in a few weeks, after things have stabilized a little bit more we will bring him up.  Like I said before, we have had several people come by to meet the babies and it truly means the world to us!  Few things brighten our day more than seeing our friends!  

I know I have included tons of information, but a lot has happened these past 7 days.  I will try to continue to update daily.   As always we ask for your continued prayers, we can certainly feel them!