2 Steps Forward.... 1 Step Back.....

that's the way I'm feeling right now about Mylah's progress.  She's out of the NICU but it seems like we've had more setbacks in the moderate care ward, than in the ICU. That's how it seems.


I remember during the consults with the cardiologists, we were told that it was highly likely Mylah would be in the ICU for at least a month.  She had surgery July 5, 2012 and was discharged from the ICU to Moderate Care on Tuesday, July 16, 2012. Almost 2 weeks and she was off the ventilator. Progress...  Progress... Progress... and it takes time.  That's how I have to look at it. I have to continuously remind myself that its better to have slow progress and a few set backs than to have fast progression and she end up right back in the hospital.


This new moderate care floor is very different than the PCTU (Pediatric Cardiac Thoracic Unit).  The sense of "urgency" here is sort of diminished. It's a transition not only for Mylah but for me as well.  Alarms beep a little longer, response is a little slower (depending on the nurse). You are looked at as "self sufficient"if you can change a diaper, bathe your baby and they even encourage you to hold your baby.  I guess this is to prepare for the next step down and eventually home.


Mylah's recovery is a process. We were so excited to leave the PCTU because things were going "good". Mylah's 2nd day in mod care proved that maybe she was pushed a little too much too fast. She went through withdrawals because she was no longer being given morphine. The irritation that she showed broke my heart. She couldn't be consoled. She didn't want to be touched, held, or rocked. Nothing could really soothe her. Wednesday night she had to be given what is called breakthrough Morphine. I can't imagine what a child who is born with an addiction goes through.  


Then I was told that an x-ray of Mylah's chest showed some atelectasis. Her oxygen needed to be changed from full 100% oxygen off the wall to a blender that mixes air flow with oxygen. This would help Mylah breathe deeper so that she could attempt to break up the atelectasis in her lungs.  Her diuretics of Diurul and Lasix had to be increased and given by IV to help shed some of the water on her lungs because her breathing was a little too labored.


All of this in a matter of 36 hours so you could understand my feelings of being extremely overwhelmed, scared, defeated, and upset. I think we were so excited about leaving the ICU that we we got ahead of ourselves. But what parent wouldn't? The struggles Mylah had on Wednesday showed me that I needed to slow down and take each day as it was.


As a mother it is so hard to see your 3 month old baby struggle to recover. Although Mylah is doing better than most expected she still has some hurdles to get over. My prayer is that she can go home the same way she came in, with one tube; her feeding tube.  If she does have to go home on oxygen I pray that it's only for a short time and that we won't have to return to the hospital anytime soon.


We haven't been given a estimated time as to when we will return home. I didn't think we would be here to celebrate Mylah's 4th month birthday (Tues) but we are. The party will go on as usual. She's still here defeating odds, just because she's in the hospital doesn't mean we won't celebrate.  There were people who didn't think she'd be here. There were those who said I was in denial about Mylah's condition. There were some who said she probably wouldn't make it off the ventilator.  There is so much to praise GOD for.

It's a continuous emotional roller coaster being here. You try to humble yourself each day. You want to celebrate the advances of your child, but sometimes I feel bad. As Mylah progresses another child regresses and I can't help but be reminded that it only takes a minute and I could be that parent. Not all these children have the support system that our family has been blessed to have. Not all families are local. Some come from other cities, states, and countries. It gets expensive living out the hospital. Whereas I could run home in 30 minutes, another family can't do that because they are from Alabama. Home for us isn't far away but for others it is. I truly believe that love and support also makes a huge difference in the recovery of these children. 

We often forget to thank GOD for things that we have that we most often take for granted. 

If you have a job, be thankful; a steady income, be thankful; food in your refrigerator, be thankful; a family member who will fill in the gap for you, be thankful; HEALTH INSURANCE, be thankful; 

These families exhibit so much strength. I can't imagine being away from Mylah during this time. The days when I must leave, Mylah is watched by my sister. I am blessed to just to have her. For a little while I don't have to carry the full worry regarding her care. I know if decisions need to be made she can make them.  GOD has blessed me with her to fill in that gap. 

We ask that you continue to pray for Mylah. Pray that her lungs clear up, Pray that she regains her strength, Pray that she can be weaned off the Methadone and Valium, Pray that she gains weight, and please continue to pray for the strength of our family and friends.

Chilling in my bed