Thursday, March 14, 2013

NICU Week 1

Dexter went in for his surgery on September 21st at around 2:30am. He was exactly 24 hours old. He was out of surgery in about 2 hours, and all went well. He lost only a minimal amount of his bowel. I was told that he would be in the nicu for a few weeks and that we would need to watch him to be sure he didn't have any leaks.

I was up all night the first night. I was pumping every two hours for 15 minutes. After pumping and cleaning the pump parts each time, I only had about an hour before I had to start all over again each time. I was getting about 2-5ml of colostrum each session. It seemed like so much work for so little, but I kept it up because I knew how vital it was to Dex. I rented a hospital grade pump to take with me.

When I was discharged Debbie came and we went straight up to the children's hospital. When we arrived at the nicu Dex was still in too much pain for us to touch him. I visited with him briefly and then Debbie drove me home so that I could fill my prescriptions for my pain meds. Dexter had 3 apnea episodes and a CT scan was ordered. The neonatologist said that it could be from pain but most 37 weekers didn't have apnea so the scan would be precautionary. The scan came back about 7 hours later, and was normal. So they put a nasal condula on him to give him bursts of air with his episodes.

When the transport team came to take Dexter from the hospital to children's I was given a rag doll called a snoedel. They told me to sleep with it in my shirt so it would have my scent and I could give it to Dexter. I put it in his isolette before we left the nicu, and it triggered his sucking reflex. I nearly had a break down right then.

Once at home I tried to put my mind at ease and relax. I was in the shower around midnight when my phone rang. The nicu called to tell me they were starting Dexter on seizure medication as a precaution. The doctor had witnessed one of his episodes and was concerned it could be from seizures. I was terrified, and nearly rushed off to the hospital. They told me they would call with more information if anything changed and that they would be speaking to a neurologist in the morning.

The next morning when I arrived for rounds the news wasn't great. They had raised his morphine because he was in so much pain. They had cathed him because his legs were turning red. They said they would now have to watch him closely because with such a high dose of morphine he may relax too much and need to be intubated, his breathing was becoming shallow.

He ended up being put on a ventilator later that day. But it allowed him to rest much more comfortably and I was able to touch his hand that night before I went home.

I was also up to 20ml per pumping session. The nurses were thrilled.

I woke up and realized I hadn't gotten a call from the nicu that night. I was excited, hoping this would be a turning point.

When I got to his bedside he opened his eyes to the sound of my voice. They had shaved his head and put an IV in. I signed a consent form for a picc line so that they could take some of his IVs out. They also switched his drainage tube out for a bigger one because they didn't want anything to pass through his bowels. He was still having apnea episodes even with the vent and the seizure meds so an EEG was ordered. He was hooked up and was going to be kept on it overnight.

My milk finally came in, and the nurse had to give me bigger containers to pump into.

Dexter's EEG came back normal. The doctor said that she thought the episodes were still from pain. But, if they didn't stop she would be looking at his heart.
I got to hold him for awhile. It was so amazing to have him in my arms again.


I got to hold Dexter skin to skin for the first time. He immediately relaxed and snuggled into me. It was heaven for both of us. They gave me a mirror to use to look at his face. The back said  "In this mirror you will see, the wonderful reflection of you and me. Hold me tight and snuggle close, this time together means the most. My skin next to yours has healing power, let's be together for at least an hour. Sit back and enjoy the view, there is nothing more I'd rather do."

Dexter was completely off of the morphine and seizure meds. They had been weaning him down slowly. They removed the catheter, and let me change his first wet diaper. He was taken off the vent, and didn't even act phased. It was a huge day for us. I got to wipe his mouth with a swab soaked in breastmilk. He tried to suck on it and seemed very excited. I was able to hold him for over an hour. By this point I was also pumping over 3oz every two hours. They gave Dexter a pacifier, since his sucking reflex was so strong. He seemed much more relaxed and content.

At exactly a week old Dexter had made amazing progress. The NICU had 8 rooms. The lower the number room you were in, the sicker the baby. Dexter started out in room 2. They moved him to room 5 at the end of the day. 

Amazing how much time and energy it took to write all this out. Will post about the rest of our NICU stay later.

Thursday, January 17, 2013

Life after the NICU

I still haven't had the energy to write out Dexter's NICU journey. The thoughts behind this post have been nagging at me and I decided to get them out first.

Nothing can prepare you for an unexpected illness or birth defect in your baby. So many ultrasounds and tests are done throughout most modern pregnancies that it is easy to assume that you would know if something is wrong. I went into a complete state of shock when I found out about Dexter. I didn't cry and sob when they told me that something was wrong. I didn't break down when the transport team brought him to me so I could say goodbye. I shed only a few tears the whole time he was in the NICU. I wanted to cry. I wanted to scream. I was just so shocked that I was numb. Nothing seemed real. My family who was there cried. They were terrified, and upset. I watched them and I wanted to cry too. I knew I should be scared. But I also knew that if I released, if I allowed myself to feel everything, that I would be of no use to Dexter. I had to stay focused so that I could comprehend and pay attention to every detail the doctors told me. I had to be strong for him. The only way I could do that was to shut out my feelings. So I did.

When you first go in to the NICU at Akron Children's you get a lot of papers and information. One of the papers you get is "how you may be feeling." It talks about the fear, uncertainty, guilt, anger etc. that parents of NICU babies often feel. I remember reading over it and wondering why I didn't feel any of those things. Was that normal?

So fast forward to 3 weeks after Dexter was born. I got to bring him home. I slowly adjusted to the idea that this little boy really was my son. I have TWO kids!? The shock started to wear off, slowly. I started to bond with him and connect with him more. And then is when MY journey really began. All those feelings I should have had while he was sick started to creep up on me. Just little things at first. He would smile at me and I would realize, "I almost lost him." I would read about friends on facebook having babies and I would get jealous. Why did they get a healthy baby and I didn't? They got all the newborn snuggles, and the bonding time. Dexter and I did not. We missed out on the first 3 weeks of "normal" mother/son bonding. I got angry. Why my baby? What if that missed time changes our bond?

I felt guilt for a long time after Calvin was born. He was a c-section delivery and I had complications. I missed out on having him put on my chest when he was born. I missed out on the peaceful bonding time those first few days because I was so sick. So when Dexter was born and I got my VBAC I was so excited. I got to have him put directly on me when he was born. I got to snuggle with him and start the bonding process I had imagined. But then he wouldn't nurse, and he started puking, and 12 hours after he was born he was on his way for x-rays and tests. I was so close to the experience I wanted and it was snatched away. I was so angry...I AM so angry. What did I do to deserve this? What did he do to deserve it? Nothing.

Then there's the guilt. Was it something I did, or didn't do, that caused this? I'm overweight, I don't eat the healthiest, I forgot most of the time to take my prenatal vitamins. Did my body fail him? Is this my fault? The doctors all say it isn't. That these things just happen. Doesn't stop the feelings from coming. I'm his mommy. I'm supposed to protect him, and I couldn't. I couldn't do anything besides pump milk for him and sit by his bedside.

I think the worst feeling of all is the fear. Now that it is all over I think about all the things that could have happened and I get scared. I feel sick. Every time he spits up I worry. Every time he doesn't have a bowel movement for a couple of days I worry. I laid awake so many nights listening to his breathing, afraid he would stop again. I bought a snuza monitor because I was losing sleep. I worry about him malrotating again. I worry about other things that "could" be wrong that we can't see. I have flashbacks remembering the puking, the goodbyes, the tubes. I remember the phone call I got that he had stopped breathing several times and they were going to intubate him. And now I can finally cry. I have anxiety attacks, and insomnia sometimes.

I am not writing this post for sympathy. I have battled with myself over whether to write it at all. I don't want to sound like I'm "attention seeking." That's how I fear this will come out sounding. I am writing this post because I want other parents who have been through the NICU or other similar experiences with their kids to know that they are not alone. That just because your baby is home and doing well now, doesn't mean that you won't still have these feelings. People say to move on, and that it is over now. Well meaning people will tell you to not dwell on it, don't think about it, it is in the past. It's not so easy. I think it is comparable to grieving. Everyone handles it in their own way. For some people it takes longer to move on. Whether your baby is still sick, or he/she is home and you are still processing. Wherever you are in the journey, you are not alone.

Dexter is happy and healthy. He is ok now. I'm not there yet, but I will be.