When Eli was born he didn't get to spend his first night with me and my husband since he went straight to the NICU. At the hospital he was delivered at they do rooming in with the parents and only have a separate area for the baby if they need extra special care. This delayed our adjustment to parenthood-we didn't have to get up in the middle of the night to feed and change our son because the nurses in the NICU took care of that for us. And since I was in pain from having a c-section, I didn't even try to sleep on the uncomfortable chair in Eli's room so that I could care for him in the middle of the night. But once I was feeling less pain and was able to get around without a wheel chair, I attempted to spend some time with Eli in his room during the night hours. I felt like a helpless mother that night as I watched our son cry out in hunger but was in pain from trying to drink from a bottle. The next day Eli was transferred to Cincinnati Children's Hospital for a g-tube consult.
The first night Eli was at Children's Hospital he stayed there alone. It was hard to leave our son in a new place by himself but at the same time I knew if I was going to be staying in the hospital alone with him over the next week or longer that A.) I needed to get some clean clothes and B.) I needed one night alone with my husband in our own bed. Once I returned to be with Eli the next morning my motherly instincts kicked in high gear. I wanted to do everything by myself-except his dressing changes....that's impossible to do alone. The first night I spent sleeping in the same room as Eli I got up with him every 2 hours to feed him and change him, plus I pumped between every feeding. So really, I didn't sleep at all. I refused help from the nurse that night, other than getting my breast milk out of the refrigerator to warm up for his feedings. I told her that I wanted to do it all since I wouldn't have help from nurses when we got home. I was utterly exhausted the next day....to the point that I was falling asleep holding Eli's hand as he got his PICC line placed in the operating room. I had to be wheeled back to the NICU because I couldn't stay awake enough to walk back,,,plus my legs and feet had swelled up so much from having a c-section several days prior. From that day forward I learned to accept help from the nurses, especially in the middle of the night. I started taking turns doing Eli's feedings with the nurses which made things easier on me during the day when there were constant doctors and medical professionals coming in to discuss Eli's care plan with me.
My husband didn't get to spend the night with me and Eli until Eli was a week old. I had been getting up to feed and change Eli and to pump for three nights so I was excited about my husband coming to stay with us for the extra help. Instead of being eager to help me take care of our son, my husband was annoyed with the screaming wake up call every 2-3 hours and constant poopy diapers that we changed. There was a clear difference in our parental instincts....I jumped up at the sound of our son crying and my husband rolled over and tried to sleep through it. Needless to say we had a frank discussion the next time my husband stayed with us several days later about what it means to be a parent and how I need him to help during the night hours since I'm all alone, with the exception of the nurses who won't be going home with us, the rest of the week when he can't stay with us because of his work schedule. That night went much better and my husband proved to me that he can step up to the plate when he needs to be there for me and Eli. He said he needed time to adjust to his new responsibilities....which I can semi understand since he didn't grow up taking care of kids like I did after becoming an aunt at 10 years old. But at the same time....I was pregnant for 9 months! What did he think being a parent was about?
The longer Eli was in the NICU the more help I started to accept from the nurses. If it was time for Eli to eat but I needed to get my own lunch, I no longer skipped lunch and let the nurse feed him instead. If his diaper needed changed but I needed to pump-the nurse got to change his diaper. I started to realize I was no good to our son by not taking care of myself. Once I started taking care of my own needs, I felt better and had more energy to invest into Eli and was less angry that I was the one constantly in the hospital taking care of our son while my husband got to work and enjoy sleeping in our own bed with no interruptions and watch whatever he wanted to on tv and go to our friend's wedding (he was also in the wedding) and have time to himself.
When it was time to take Eli home I was so happy and thought we would all transition well into our own routine. We took him home on a Friday and the weekend went really well. He slept good in the rock-and-play we had for him in substitute of a crib or bassinet. My husband was helpful on Friday and Saturday night with getting up with me to change him and feed him. But then Sunday came and my husband had to be at work Monday morning. I attempted to do it all by myself...all night long....all week long...and to top it off Eli wouldn't sleep anywhere besides in my arms which meant we slept on the couch together so my husband could get his restful sleep in the bed. I became physically and emotionally exhausted. I became resentful of my husband again for not offering to help me at night and then for working on house projects after work every day instead of giving me a break to do something I wanted to do for myself.....even if that meant cleaning the toilet in the bathroom. I just wanted a break from our child. And I didn't think I should have to spell that out to my husband so I never said a word to him and let my emotions bottle up. I was involved in every dressing change that was done-with the home health nurse three days a week and with my husband the other four day a week. I cried every day while washing bottles multiples times a day. I wanted to clean my house or take Eli for a walk but could never find the time to do either. I was 4 weeks in to my 6 week maternity leave and felt completely angry that it was nothing like I thought it was going to be. I thought it was going to be full of cuddles and relaxation and family walks and visits from family and friends and catching up on all my favorite tv shows. It was none of that, Instead it was waking up three or four times a night to feed and change our son, and then feeding him five more times throughout the day, changing diapers every 1-3 hours, trying to find 30 minutes to shower and pull my hair into a pony tail, 2-3 hours of preparing for and doing daily dressing changes, watching new blisters form on our son's naked body everyday or getting yelled at for putting clothes on Eli and finding new blisters when we took them off, washing bottles 2-3 times a day, and having my breasts connected to the pump 4-5 times a day. To be honest.....I didn't like being a parent the first week we were home. I wanted my old life back. I wanted my freedom and my sanity and my bed back.
By the end of Eli's first week home I had finally snapped. My husband thought I was completely insane by my hysterical crying, and yelling and screaming. I had finally admitted to him and myself that I hated my life,...I was completely miserable. I was screaming out loud to God for giving us a imperfect child after all the hell we've already faced throughout the last seven years between losing four babies and spending 50+ thousand trying to have a healthy child. My husband and I argued about how to dress Eli and the right or wrong way to change his wound dressings. I finally admitted to him that I was angry that he got to sleep through the night and then never even offered to take care of Eli after work to give me the slighted break from him. Instead of validating me or trying to come up with a solution on how to make this parenting thing work for the both of us to keep us both sane, he took Eli from me making me feel like a horrible mother and told me I would be the cause of our divorce. And a little over an hour later when he couldn't get Eli to sleep he brought him back to me on the couch because he needed to get some sleep before his 4 hour Saturday shift at work.
The next day my husband came home from work and hugged me while I was crying over a sink full of dirty bottles that needed to be washed. He told me we needed to figure out how to make this work for us and that I needed to communicate with him more about when I need time for myself because he's not a mind reader. I explained to him that I didn't feel I should have to ask him to feed or change our son or should have to tell him I'm exhausted and need "me" time because that should all be common sense. No woman loves taking care of her child 24/7.
Since that day we've gotten our night time routine down. I take the first half of the time because even when I'm exhausted I can't shut my brain off until sometime between 1-3am. My husband on the other hand can't stay awake past 11pm and is a bear if he falls asleep and is woken up 30 minutes later. If he can get a couple hours of solid sleep then he is good to go with cat napping the rest of the night. Whereas after 3am I will lose my ever loving mind if I don't get some restful sleep. We take turns sleeping on the couch since Eli still won't sleep in his rock-and-play longer than 20-30 minutes at a time. On the couch he will usually sleep for 2 hours straight before waking up to be changed and fed again. It sucks that we haven't slept in bed together more than five times in the past 6.5 weeks....but this is our new life. Eli is in charge now. And it works for us for the time being.
Now that we have our night routine down I feel less depressed and angry. I still have my bad days where I feel like I get nothing accomplished that I want to get done and get upset with my husband when he tells me he has things to do in the evenings. One day I would love for him to take care of Eli in the evening instead of staining bedroom doors so that I could clean the bathroom or go grocery shopping. I've only gotten one morning and afternoon away from the house without Eli and that was to go to church and to Wal-Mart after church. Any other time that I leave the house Eli comes with me....which has been good for me too though. We aren't sheltering ourselves anymore. I've taken him to the mall and to church and to visit my parents and sister's and we've taken several walks finally. It's starting to feel like he really is a normal baby who just requires these daily dressing changes instead of feeling like the dressing changes and Eli's skin disease are controlling everything that we do.
As far as the dressing changes go, right now we have a nurse coming to help me three days a week and me and my husband do it together the other four. We are learning new ways to wrap Eli's body parts every week and trying our best to figure out what works for him. The dressing changes can become emotionally intense when me and my husband do them together but we are improving on that as well. The more we see Eli's skin healing, the better we get along during the dressing changes because they are easier to do and we feel like we are doing our job as his parents at healing our son. Knock on wood.....we haven't seen any large blisters form for almost 2 weeks now and with the new concoction cream my husband created with aquaphor, A&D ointment, and Neosporin, Eli's feet which have been the hardest to heal are making some good improvements.
Eli is now almost 7 weeks old. He has been home for almost a month and every day does get a little easier. Some days are still rough days, but we are adjusting to this new normal. I will be going back to work full time on October 5th so that will be a whole new adjustment for all of us. Eli will be spending most of his day with a nurse and then my husband. I will have to learn to be more structured with my day to be able to get Eli's dressing changes done in the mornings and get myself ready for work on time. I'm sure exhausted won't even describe how I will feel the first month being back at work. My 8.5 hour work day is extended to 11 hours with drive time. My husband will have to adjust to taking care of Eli on his own in the evenings and my guess is he will learn quickly that our son doesn't give you much time to do things you want to do around the house. Hopefully it won't be too terrible of a transition for us but I know it won't be easy.
My next blog will be about Eli's medical diagnosis once we get his genetic testing back and learn about why type of EB he has. Hopefully we will know within the next week or two. Please keep praying that Eli has a mild form of EB and pray that God finds a way to heal our son completely of this disease.