Be Strong

"Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.”  Joshua 1:9

"Be strong, Be brave, Be kind" is a quote on our boys' wall. I love reciting it in my head and it is something I have recited to Evey when I leave her for the day: Be strong, be brave, we love you". 

She has come a long way since she was born.  Her goal was to be and stay 5.5 pounds or more before they could place her stent in her heart. We came to visit her on July 2nd (her 1 month birthday) and she was just under 5.5 lbs. I told her to eat all the food so that she could be 5.5lbs by July 4th. 

We got the call on July 3rd that we had a room at the Ronald McDonald House, so we packed everything up and came to Durham on July 4th. In my heart I knew something was going to happen and me being hopeful, I was hoping that within the next two weeks she could possibly get her stent and be on her way home! On July 3rd, she was 5 lbs 9 ounces. I was so happy to hear that news.  

We got a lot of cuddles and holding between July 4th-6th. We worked on sucking on the paci with breast milk, massages and a little physical therapy.  The specialists showed me how to calm her body before assessments so that she could be more relaxed when she got her diaper changed. She was responding so well. 

Her primary nurse, Ms B, came back to work on night shift on July 6th. Evey missed her so much that she decided to make sure Nurse B gave her all the attention that night.  

Evey started desating on July 6th. Being the best nurse that she is, Nurse B was trying everything to get her saturation levels up.  When they got into the 20s, that's when the team decided to intubate her.  While all this was going on, we were getting our sleep. When I woke up at 2am I had a feeling to call Nurse B to get an update, but I didn't because I knew she was being taken care of,  so I told myself at 6am that I would call Nurse B to get an update.  I had just started pumping, got my phone to dial the number and that's when Duke Hospital popped up on my screen. I answered and it was D, her nurse practitioner, calling to give me an update. I knew it wasn't going to be good. She reassured me that she was alert and active and stable after being intubated. I woke Joshua up and told him everything and I finished pumping and we made our way to the hospital. 

I got there at 745am, but they wouldn't let me go back there because they were trying to get labs. She has really thick blood so it's difficult to draw blood anywhere besides her head.  They eventually got it from her head and  was able to send it off.  She began to have seizure type episodes as well during this time and started desating again. I was finally able to go back there around 10am. Between 10am and 12pm she received an eeg, head ultra sound, and another echo.  I maybe got to see her for 5 minutes, teary eyed the whole time. Seeing your baby intubated after holding her the day before is a really hard scene to walk into.  The nurses gave me a tissue box and our social worker, came to be with me and talk with me while we were watching all of these tests being administered. After things calmed down a bit, I went to lunch and pump and while I was out, she received an IV in her hand.  When I came back they were talking about how to give a blood transfusion (Evey's day nurse was training a new NiCU nurse). I asked why they were giving her a blood transfusion and they said cardio ordered it since her hematocrit levels were a little low.  Evey was stable at this point and I was able to leave at 5pm knowing everything was beginning to calm down.  

Later that night, and the next morning I called  Nurse B to check in on her  every 3 hours and Nurse B reassured me that she was doing well and she was getting rest. 

I got to the hospital around 8:15 on July 7th while they were doing rounds. The nurse filled me in on the goals for Evey and said they were going to watch her saturation, give her morphine to calm her body, and keep her comfortable while they wait on all the labs to come back to figure out the next step.  Nurse Kay, her day nurse from Thursday, was there again along with Nurse K, a sweet nurse that worked with Nurse B a few weeks back that loved on me and Evey. 

Everything was looking good and I was able to be at her bedside, rubbing her face and giving her gentle hand hugs. EEG came around 12 to take her eeg cords off her head and she began to desat. They took a break while her numbers went back up and they quickly finished. I was so happy to be able to touch her head again!

During rounds they talked about putting in a peripheral artery line to better record her blood pressure and draw blood to give her less pokes. So around 1230 they came and did that and I went to lunch and pump. 

After lunch, she began to desat again so the respiratory therapist, who is also one of the best, decided it was time to try nitrate along with 100% oxygen. She also advocated for the team to give her a different medication to calm her nervous system down.  Evey was doing so much better on the new medication and nitrate. 

Around 3:30 she desated again and I tried calming her down with my touch. The nurse practitioner came in to watch her numbers and she called the Attending doctor to come in as well. While I was singing and talking and rubbing Evey her saturation came up, and the nurse practitioner commented that my touch was helping her.  Her numbers did go up but not to where they needed to be. The respiratory therapist came over to listen to her. Evey became very pale and sticky to the touch.  They ordered an Xray and echo Stat. The xray showed her right lung had collapsed so they repositioned her to lay on her right side to give her body a break to rest.  When they situated her, I went back over and talked with her and told her everything was going to be ok.  A little small tear came out of her eye and I wiped it away and said: aww sweet girl everything will be ok.  They are working really hard to help you feel better!" They got her some new medication that the doctor ordered and her numbers started going up.  I took this opportunity to go pump since I hadn't pumped in a while and the nurse told me she would call me if anything changed.  

I was maybe 15 minutes into pumping when they called me to tell me they were going to put her on the jet(a higher ventilator). So I said ok thank you for letting me know.  I continued pumping while updating everyone. 10 minutes later I get another call saying they are going to transfer her to the Pediatric cardiac intensive care unit. I call Joshua to let him know so that he can come see her before they move her.  I hurry up and finish pumping and head back into the room. When I got in there all the nurses were in there trying to get her ready to transfer. Of course I start tearing up and another nurse comes and gives me tissue. Nurse K comes over and tells me she is going to update Nurse B and I told her thank you! The nurse that brought me tissue, told me she trained Nurse B and I told her that she did a great job training her and how thankful I was that she was Evey's nurse since birth.  Nurse K let me know that Nurse B would come in earlier to see her before she got transferred. All this happened between 4:30-4:45.

Joshua texted me at 5 letting me know that he and the kids were downstairs. I let him know to come up there and that we would trade off once they get her settled. The nurse offered to stay with the kids so that we could be in there together. I told her it would be ok.  I let Joshua know what he would see so that he would be prepared. He went back there and I got the kids a snack since it was 530pm. When I got them settled, the nurse came out and said I should go back there, so I did.  I go back there and Joshua is crying, so I start to cry. I tell him that she is in good hands and that its hard seeing her like this but her body needs to rest so that she can get better. I ask him if he wanted me to stay or go back out with the kids and he said it didn't matter.  So I said, you spend some time with her and I'll go back out with the kids.  Another nurse came and sat with me and the kids and told me I could go back again if I wanted and I told her it would be ok.  Of course Ty loved telling all the nurses his name, how old he was and what he liked to do.  

D, the nurse practitioner, saw me as she was leaving, gave me a big hug and said she  was sorry about what was happening with Evey. I told her it was all going to be ok and I thanked her for all the work she did for Evey over the past two days. She started tearing up and said thank you and left.  As she was walking down the hall, another nurse asked if she was OK and she said yes, but I could tell she was not.  All the nurses love Evey and cared for her with all their heart.

Joshua texted me at 6pm to let me know they were about to transfer her. Nurse B came out of the door next, gave me a hug, and I introduced her to Laney and the boys.  She told me that she had bought Evey a cute swaddle that she was going to put on her after her bath on Monday. She is one special nurse! I thanked her for all the love and care she provided for Evey and she let me know she was helping with the transfer. I was so so happy that she could do that. Another blessing for Evey and for my peace of mind!

We told the front desk that we were going to get supper for the kids and to have them call us when they transfer her. As we got to the main hall, the receptionist came running to us to let us know they were starting to move her and gave us the new room number. 

We ate rather quickly so that we could go up and see her. The kids were doing an amazing job going with the flow. Ty was beginning to fall apart, but he got it together when he was able to eat a big piece of chocolate cake. Chocolate always fixes everything!

We got to to the PCICU waiting room and it was already amazing! They had a TV, books, coloring pages and outlets. The kids were able to do something while we waited more.  The nurse came out at 8:45 and said we could go back there. We looked at each other and said all of us?  And she said yes, the kids too! They were all excited! This was the first time they would be able to see their baby sister in person. 

We were able to be a part of night rounds and the kids got to spend time with Evey. It was the silver lining to an eventful, emotional day.  It made me so happy to see the kids talking and gently touching Evey's head.  

As of today, 7/8, Evey's lung has reinflated, after they suctioned a huge mucous plug out of it, they are working on getting rid of the infection she has, weaning her off the jet and nitrate and getting her back to her strong self before all of the unexpected happened. 

Thank you for the prayers and good thoughts! We love you all! 

Be like a Bee- hardworking, wise and delicate!