Trying to Erase the Doubt

Here we are. Gestational age, 29 weeks. Out of Womb, 1 week, 1 day or 8 days old. Corrected Age, -2 months, 2 weeks. These little fighters have made it over a week as micro preemies and I couldn’t be more proud! This doesn’t mean that the rollercoaster is over. I feel like the most adrenaline-pumping segment has just begun.

We were told that there was a “honeymoon period” that we would experience with our boys. They explained to us that they might seem to be doing really well at first then the road of complications was likely to begin. It didn’t take long for the honeymoon period to end.

“Timeline”

Thursday, November 7th

My first time meeting the boys. 1:05 AM. Little Miracles. I absolutely could not believe they were outside of my body and doing so well!

Mabel meets her brothers for the first time. Such an amazing moment!

Friday, November 8th: Discharge Day!!

I was feeling pretty good post, cesarean/vaginal delivery. Walking around, visiting the boys. Filled with hope! I was feeling so good the doctor agreed to discharge me early. I couldn’t wait to actually leave the hospital. Not my boys, but being able to physically leave at my own will gave me a new sense of freedom. Not that I could have asked for better care or sweeter nurses in the Perinatal Unit, but seeing a new landscape was going to be liberating! Seeing my daughter in her familiar settings or just not in a sterile environment was going to be so exciting! Going HOME! Seeing my dogs, my house, my neighborhood, and my hometown. All so exciting. All so nerve wracking. How am I supposed to leave these little guys? It’s only an hour and a half away, but if a problem arose, that seems like forever.

We couldn’t move into our rental house in Pensacola until Sunday, so it only seemed to make sense to go home. Reorganize, unpack, repack, decompress. I was able to hold Baby Brendan before we left! We said goodbye to the boys late Friday afternoon and headed home. It was so wonderful to be home. Walking through the door brought me peace. Not to mention the wonderful smell of lilies due to the many floral arrangements so many thoughtful people had sent. (Thank you)! Mabel arrived home thirty minutes after we arrived and that made being home so much sweeter. That little girl brought me to tears so many times that night. It was like she knew I was “home”. “Mama’s back all better”? “Doctor fix your back”? “Mama hold me now”? “The babies pop out”? It was all so cute. (We told Mabel that the reason I was in the hospital was because my back hurt. That’s why I couldn’t hold her. I didn’t want her to resent the babies before they were born so I never told her they were the reason I was kept away from her). I still cannot wait to hold her but I’m going to try not to hurt myself for a few more days!

Later that night, around 9:30PM, I was finishing up pumping, which is going great by the way, and the hospital called. The NICU doctor informed me that Baby Brendan had an x-ray and has free air in his abdomen so they want to do surgery right away. They believed he had a bowel perforation. I was so mad at myself for coming home, for being so far away. The doctor walked me through it, said there was absolutely nothing I could do for him there. He explained the outcomes, the procedure and said it would take him no longer than fifteen minutes to insert a drain to free the air and fluid. I gave consent over the phone and waited for him to call me back after the procedure was over. 20 minutes later, he called said the procedure went beautifully and Brendan was recovering just fine. Relief. My head still felt like it was floating in the air and my feet still felt like they weren’t on the ground, but I knew he was okay, for now.

The anxiety surrounding this procedure is the statistics. I know these aren’t exactly accurate because I am just basing them on the anxiety ridden late night conversation I had with the doctor, but I know they’re relatively close. 33% of babies that have a “penrose drain” inserted recover well and the perforation heals itself. 33% perforation “heals” but scar tissue forms and a later surgery has to be performed and an ostomy typically is put in place. 33% get very sick and present signs of infection and have to have an ostomy put in. Either way, they said it would take 2-5 days until we learned which percent we were in.

Saturday, November 9th

Drive back and forth from Destin to Pensacola to visit with the boys. Both doing well! They are under the Bili Lights, but their levels are trending down. I break out into a terrible rash that spread all over my torso. Feels like I swam in a poison ivy bush. Misery.

Sunday, November 10th

Move into rental house in Pensacola. Boys are off the Bili Light. Brendan had to have a blood transfusion but we knew that was coming. My rash has spread even more. I’m basically miserable in my skin! I’ve lathered myself in every skin cream imaginable. No relief.

Monday, November 11th

Good first night in the new house! Boys doing well! I can’t handle the rash anymore. I go to Labor and Delivery to see a doctor. Contact Dermititis. They say I probably had a reaction to some adhesive or prep material from my c-section. I start steroids and an allergy medicine. This is the first time I was able to hold Wright! He’s off of his breathing machine, breathing on his own and has no more IV nutrition. He’s strictly on my breast milk and growing! Baby Brendan received a PICC line today so they can stop poking and prodding him.

Tuesday, November 12th

We are told this day that Baby Brendan’s perforation doesn’t seem to be closing on his own. They would like to do exploratory surgery on him to determine where the hole is and how big it is. Plan is to repair with an ostomy. Such a scary conversation but we decided that he needs to eat. The fastest way to get him to eat is with an ostomy. He needs to grow and that’s not going to happen without food. We give consent to have the surgery. B was able to hold Wright for the first time this night! Skin to skin with daddy!

Wednesday, November 13th: Brendan’s Surgery

We show up at 8:45am. We are told that his surgery will be at 9:30. Mom, Dad, and Kat join us. He was intubated around 11. We all sit and wait around until noon before he finally goes back. Longest couple of hours of my life. Brendan and I walk back to surgery with him. There have been a lot of tears today. I have cried over every outcome. I don’t think I’ve honestly ever been more scared in my life. We meet the doctors and they take him back. Now we wait. After what seems like an eternity the surgeon comes out and tells us that the surgery went well and that Brendan did great! YAY!! More tears! Celebration! I’m so proud of him. He has fought so hard.

All of us are celebrating and just so happy that he is doing so well, all things considered. I was so happy to see him once they brought him back.

I was able to do skin to skin with Wright for the first time that afternoon after Brendan was brought back. Celebrating Brendan’s successful surgery and the fact that I was able to really bond with Wright came to a quick halt when the Resident On Call walked in and asked if we could go over some things. She told me that Wright had a head ultrasound and a Grade 2 Brain Bleed was found. It shook me to my core. This is my healthy baby! Look at him! He looks practically perfect. There can’t be something wrong with him, too. They had told me earlier that morning that both boys’ head ultrasounds came back negative. Somewhere there was a mix-up. I was absolutely devastated. The resident didn’t have great delivery and I must say she wasn’t very knowledgeable on the situation. Now I’m mad. So very mad. I think she sensed it because she left and came back with our doctor. He came in and explained everything to me and honestly, as much as he could, put me at ease. Yes, it is still very scary, but it is something he can live with. It is something he can thrive with. Yes, it could cause a whole array of problems, but it could also cause no problems at all. A possible solution? Stimulation. I can MAKE THAT HAPPEN. He said, reading to him, stimulating his motor movements, singing to him, talking to him, skin to skin. All these things will help. He may need occupational therapy. Again, we can do that! We WILL do whatever he needs. I’m going to add prayer and faith in God to that list and trust that he will be just fine.

Wright will have another head ultrasound in two weeks on November 27th. We will know more then. We are praying that it doesn’t grow into anything any bigger and ultimately resolves on its own.

What. a. day. I keep saying, if we’re going to have a bad day, let’s just have it all at once.

Wednesday, that’s exactly what happened.

The positives: (As of Thursday, November 14that 4:30PM)

Brendan did great in his surgery! The doctor said it went perfectly. He’s recovering nicely and looks better already! He does not have a brain bleed! He gained weight the night of his surgery! He had good output from his ostomy and stooled! They said that is a REALLY good sign! Hopefully, if he keeps progressing in this manner I can hold him again and he’ll be able to go back on breast milk, which is our number one goal! Depending on his X-Ray on Friday morning, he may start feeds by the afternoon! They are also debating if they will extubate him tonight. He is going to get a blood transfusion tonight and the doctor said that will make him feel much better and will have the desire to eat tomorrow!

Wright is doing so well! All he has is a feeding tube. He gained 50 grams over night and is growing so well. He has great reflexes and loves to snuggle (maybe not as much as me)! Our goals for him are to grow and decrease the small number of apnea episodes he has.

We love these boys so much and I am so proud of how hard they have been fighting! Please continue your prayers for them! We appreciate them more than you know! God is so good and continues to strengthen them everyday. They truly are little miracles!