VSD, NICU and HOME!

March 18-24, 2013

Sunday afternoon the hospital pediatrician came to do Leila’s check-up. During the check-up she heard a heart murmur and told us she would order an echocardiogram to find the cause of the heart murmur. Monday morning the tech performed the echocardiogram and sent the results to be read by the pediatric cardiologist at Texas Children’s Hospital. After the test, Leila was sent to the NICU to have her blood pressure checked.

While the nurse practitioner was listening to her heart and taking her blood pressure she had a cyanotic episode. Basically, she had a large buildup of mucous that her body has been trying to get out. She then choked on some of the mucous and turned blue. This had happened when I was feeding her the previous night. She started choking on mucous so Allen got the nurse while I patted her on the back and then the nurse helped us suction the mucous out. Then the nurse kept an eye on her in the nursery and continued to suction it out when she would have an episode. Anyway, she had two cyanotic episodes under the supervision of the NICU staff within half an hour, where she turned blue and couldn’t pass the mucous on her own and her heart rate dropped from around 140 to 70 bpm. The nurse came back to Allen and me to tell us Leila had been admitted to the NICU for monitoring.

About half an hour after Leila was admitted to the NICU we got the result that she had three things wrong with her heart, two of which are common among newborns, PDA and PFO.  These typically resolve on their own within a few days of birth. The third problem, ventricular septal dysfunction (VSD), is not rare either. It is a hole between the lower two chambers of the heart that can heal on its own if it is small enough, otherwise it requires surgery. Leila’s is classified as a moderate size, which means we wait and see the pediatric cardiologist when she is two months old to see if it is healing.

I was initially very overwhelmed when the pediatrician talked to us about VSD and about Leila being in the NICU. It didn't help that I was emotionally and physically exhausted from giving birth the previous day either. I felt like it was my fault, like if I had been better about taking pre-natal vitamins or had done something differently when pregnant that she wouldn't have to have this. (The information the doctor gave us said "other than avoiding alcohol and antiseizure medicines, there is no known way to prevent a VSD". So that made me feel better!) By a couple of hours later I was feeling better about everything and then after Allen and one of our friends, BJ, gave Leila a blessing on Monday evening, I felt a lot more comfort and peace. 

If she only had VSD and not the cyanotic episodes, she would not be monitored in the NICU. The two are unrelated and the main cause for concern for the NP was that Leila’s heart rate dropped so drastically. We feel very fortunate that it happened in the hospital where she was able to be cared for immediately and receive the monitoring she has. Things have been going well and they will most likely release her this weekend.

We are also grateful that my mom has been able to be here since Sunday night. She has been taking care of Caleb and brought him to visit us in the hospital twice a day while we were there. Now that I’ve been discharged from the hospital, she takes a shift holding Leila in the NICU while I go home to be with Allen and Caleb between nursings. And then she takes care of him when we’re both here. I’m also very grateful that Allen gets two weeks of paternity leave.

The proud grandma

I love my kids!

Monday morning Caleb realized Leila was a little human and loved pointing to her nose, eyes and mouth. Whenever he saw her stick her tongue out, he would stick his out and make mommy, daddy and Grammy all stick our tongues out too. Leila, Caleb and I sat on the bed together and Caleb would lay across me, looking at her and then resume climbing on me as I tried to protect Leila, then he would kiss her forehead and her hand and her leg.

Pulling on her ear

I love you, you love me... We are a happy family!

Strapped down for the echocardiogram

Between the curtain he played peek-a-boo in and watching Tangled, Caleb could survive hanging out in my hospital room for about 30-45 minutes before we had to leave to find the fish, run in the lobby or walk in the grass.

Welcome to the NICU

To be honest, having Leila in the NICU was harder than I anticipated. When they first said she was being monitored there, I didn't realize they meant that it was for a few days. No one told me that's what it meant. I was thinking a few hours. No other parents were in the NICU and I wondered if I was allowed/supposed to be there. It was confusing and frustrating. There was constant beeping of monitors and cords attached to Leila. I kept wondering why we were there. She was huge compared to all of the other babies in there and seemed like she had no problems compared to any of them either.

They let me stay in my room in the hospital for a couple more nights so I could come in and nurse her during the night. Then I spent two nights at home and they tube-fed her the milk I had pumped. I was able to sleep better at home but still woke up to pump and then immediately went back to nurse her in the morning. She was having reflux and problems nursing and didn't have much desire to nurse sometimes but after meeting with several lactation consultants, no one had any additional advice.

Friday they needed the space in the NICU and moved Leila up to the pediatric room in preparation for us to leave the next day. The last night you have a parent-care night to make sure you can handle everything. However, in the pediatric unit you have to have an adult with the child at all times. Allen and I had to attend a CPR class before we could bring Leila home and my mom had to be with Caleb. I wasn't sure who to call that didn't have kids. Thankfully my Relief Society president at church was prompted to call me and come to the hospital, even when I didn't answer my phone. She held Leila while we attended the CPR class.

Friday night I spent in the hospital with Leila in a pediatric room. Saturday by 1:15 pm we were home. It had been an exhausting week physically and emotionally. I was grateful to be home. I was also thankful to have my mom here. Leila's reflux was so bad and she continued having little choking episodes so my mom would sleep with Leila in her arms or in the bouncer and take care of her so I could sleep. Then she would bring her to me when she was ready to nurse.

Mommy giving Leila a "bath"

What a little trooper!