Slow and Steady

Well, in this journey we are on with Miss Emma, we have our ups, downs, and leveled out times.  We are currently riding in the level area.  We knew that we might have to be in Dallas for six months, but we really did not think that we would be in the hospital that long.  However, it is looking more and more like we will be in the hospital for at least a few more months if not until the Glenn.

 In utero, Emma had a restricted atrial septum, which messed up her blood flow.  This blood flow problem caused damage to Emma’s pulmonary lymphatic system.  To add insult to injury, during the Norwood procedure, Emma’s lymphatic system was accidently nicked.  Now, understand, that we knew she could have some lung damage and that during any surgery other “things” could get accidently damaged.  I mean, we are talking about working on something the size of a strawberry.  What happens when the lymphatic system gets damaged is that fluid leaks into the chest cavity.  Also, it prohibits fat from being processed so it leaks into the chest cavity as well.  So, Emma is on a “fat-free” formula given to her through her feeding tube, and receives lipids (fats) directly into her veins.  Today, that put her back up to 30kcals and 3 on her lipids, so she is at optimal calories and fat intake right now, which is good.  Apparently, it takes the lymphatic system a few months to repair itself and that only really happens when the baby is receiving good nutrition.  So, Emma is now getting good nutrition, which means we must now sit back and wait for the lymphatic system to heal.  As long as the lymphatic system is leaking, it drains fluid into her chest cavity, which affects her lung function.  As you can see, it is a cycle---one that can be highly frustrating at times.   

However, we have a lot to be thankful for.  Emma’s heart is functioning well and her scar is fading fast.  Emma is proving to us that she is a fighter and that she is treating this journey like a marathon, slow and steady.  She has begun receiving occupational therapy, physical therapy, and massage therapy.  She is tolerating these therapies well, and I am even learning moves to do with her to help strengthen her little muscles.  We are very excited that Emma is tolerating her feeds well and is obviously digesting her food well…lol…we change many poopy diapers. 

So, Scott, Emma, and I will be in Dallas for a while.  How long will we be in ICU?  That is hard to say, but I don’t expect us to be out of ICU by Thanksgiving.  At times, this is disappointing, but we have to remember that Emma does better at a slow pace.  God is in control and has our best interest at heart.  And, ultimately, Scott and I want Emma to get better however long that takes.  We appreciate the doctors and other medical staff for their continue care over Emma, and the continued prayers, support, and kind words from all of you.  There are frustrating times, happy times, exhausting times, funny times, loving times, etc.  Emma is our little princess and brings a love into my life that I did not know existed.  We look forward to the day when we can introduce her to everyone, but until then, we “share” her with you via the blog.  Please keep praying, it would be so nice to be extubated within the next two weeks .

God is good!  All the time!  God is Good! 

Specific Prayer Requests:

Pray that Emma will continue to breathe over the vent.

 Pray that the fluid in, on , and around her lungs will continue to decrease and go away.

Pray that Emma’s heart stays arrhythmia free.

Pray that the doctors can find a good pain/sedation balance with new medications.

Pray that Emma will tolerate the tolerex formula and hold her food down and properly digest it.

Pray that Emma’s sats, neer, labs, etc. stay good.

Pray that Scott and I will have strength and patience for this journey.      

P.S.  There are days lately that are stable and uneventful (which is good), so if we don’t update the blog please know things are ok. 

Mommy (Sarah)