Adjusting to Parenthood....with an Extra Secial Child

Becoming parents was our dream.  Our dream was achieved.  But let me tell you.....this isn't the dream we were dreaming of. This is hard work....not that we didn't think becoming parents wouldn't be hard work.  It would be hard even if our child was perfectly healthy.  Babies demand a lot of attention, and sleepless nights, and head-scratching while trying to figure out how to get them to eat, sleep, and poop comfortably. But a healthy baby wouldn't require a daily bath and 2-3 hour dressing changes. And a healthy baby wouldn't get blisters from their adorable outfits, that their mommy saw in the store while she was pregnant and couldn't resist buying, rubbing against their skin. And a healthy baby wouldn't require their diapers to be aquaphored to prevent blistering in the diaper area but still get them anyways.  A healthy baby would have their tiny precious feet exposed during these hot summer days instead of wrapped up with gooey creams and ugly gauze and cushiony padding.  A healthy baby can eat from a normal Dr. Brown's or Advent or Evenflo nipples and wouldn't get blisters and bleeding inside their mouth, on their tongue and gums, and on their lips.  A healthy baby's skin doesn't tear from a simple scratch.  A healthy baby doesn't get a daily dose of Oxycodone. Our child has extra special needs, and it has been a rough and tough adjustment to accepting his lack of normalcy.

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.

Our NICU Experience

When my genetic doctor recommended an induction at 36 weeks due to the increased risk of post-partum strokes in patients with Homocystinuria, my OB and high risk OB immediately said they would not induce me until at least 37 weeks. Why? Because of the risk of having a baby in the NICU before being considered full term. After experiencing the amount of loss that we have, and after hearing so many stories of things that can go wrong even at 40 weeks....we knew there was always a chance that our baby could end up in the NICU regardless of how close we made it to that 40 week mark.  But did we really think that going into the hospital for my induction at 39 weeks 1 day that our baby wouldn't be coming home with us? Not at all.  We thought we had finally succeeded in our goal of having a healthy, full term, take home baby.  After all, our son was perfectly healthy on every weekly NST and ultrasound that we had during the 7 weeks prior to my induction.

When Eli was born the doctors and nursing staff in the operating room noticed immediately that he did not have any skin on his feet.  While cleaning him up the skin rubbed right off of his right hand.  At that point they stopped cleaning him and determined he needed to go to the NICU to be examined further. While I was being sewed up I told my husband to follow Eli to the NICU....I didn't want him to be alone.  I was only able to get a quick look at our son before he was whisked away from me. At that time I had no clue how serious his skin issue was.  I thought he was being taken just for an examination and that night or the next day he would get to join me and my husband in our mother-baby room like he was supposed to,

After getting out of recovery I was able to be wheeled to the NICU where I was able to hold Eli only because they wanted us to attempt breast feeding. Eli wasn't interested in latching.  He thought my breasts were good pillows, not good nutrition sources. Before being wheeled away from our son to my own room, the neonatologist came by to tell me and my husband that he suspected Eli has a rare skin disease called Epidermylosis Bullosa and had to be started right away on IV nutrition through an umbilical IV which they were going to start that night.  I had no idea what this disease was or how long our NICU stay would be because of it.  At that point I was still under the delusion that this was all just a temporary issue and he would get to go home with us when I was discharged.

The next morning my husband got up and immediately went to the NICU to be with Eli while I ordered my breakfast and took the time to shower.  When he came back from his visit with our son he was crying and I couldn't understand why he was so upset. I was just glad our son was alive.  This Epidermylosis Bullosa business couldn't be bad enough to not be thankful that my body grew our son from a clump of cells into a beautiful, full term baby boy.  I kept telling my husband that we had so much to be thankful for and that everything was going to be okay.  But he had researched EB and I had not.  He read how horrible this disease is and I had not.  He saw pictures of kids and adults with this disease and I had not.  I was still in la-la land and he was not.  And that's how it stayed for the next 48 hours.  The first two full days Eli was in the NICU my husband and I would take turns spending time with him, each of us spending several hours at a time in Eli's room.  When I spent my time with Eli all I would do was hold him and love on him.  When my husband spent his time with Eli all he would do is stare at him and feared touching him due to everything he had read about EB kids having fragile skin.  Every time my husband would return to my room he was sit and cry and I was the calming voice of reason for him.

On the third day of Eli's NICU stay I finally convinced my husband to go home for the morning and afternoon to get away from the hospital. He also needed to shower.  He hadn't showered in four days.  I spent that morning with Eli. I finally started feeling the heaviness that my husband had been feeling. It had been three days since Eli was born and nothing that I imagined would have happened in that time frame was happening. He hadn't been able to have his newborn pictures taken because he was hooked up to an IV in his belly button.  He wasn't able to breast feed because he couldn't latch and I had yet to even produce anything to give him.  I wasn't able to bottle feed him because the nurses were worried that the bottle would cause him too much pain. I started feeling frustrated with the care he was getting at Kettering because it seemed like every day there was some new theory about how to feed him,,,,one day the nurse was okay with bottle feeding, the next day I felt pressured to breast feed even though neither of us could do it. One night Eli took the bottle great for me so the next day I thought I would be able to try the bottle a couple more times but was told that day that I couldn't because I would just be causing our son pain by feeding him.  I wasn't able to hold his hand or touch his little toes because they were always wrapped in gauze.  I wasn't allowed to put blankets on him because the nurses said it would cause too much friction on his skin or would over heat him.  He had yet to get a bath or wear any clothes.  When I returned to my room that day to eat lunch and get a shower the emotion hit me like a ton of bricks.  I cried hysterically as the hot water poured over me.  I felt like I was failing our son.  I felt angry that he was unable to be treated like any other full term newborn baby.  I felt confused about what was right and what was wrong for him.  I felt pressured from the nurses that I had to start producing breast milk or they wouldn't attempt to feed our son at all.  When I got out of the shower I stood in front of the mirror and leaned over the sink and begged to God to help us through this. I cried and pleaded to understand why this would happen to us after all we had already been through. As I stood in front of the mirror I felt the loneliest that I had felt in a very long time.

When my husband returned to the hospital that evening we were able to meet a nurse and her son who both have Dominant Simplex EB...a more mild version of the disease.  Talking with them provided my husband with hope for our son.  But for me, it made Eli's disease more of a reality.  Both the nurse and her son looked completely normal.  They had no scars on them from their skin blistering or peeling off. But hearing that our son would most likely not crawl and walk in the normal time frame was very hard for me to hear.  As a mother it was like ripping apart my dreams and goals for our child.  My husband on the other hand was focused on the long term abilities such as having a successful career and marriage which both the nurse and her son were able to achieve and this made him feel better about Eli's future.

The next day I was officially discharged from the hospital.  We were grateful that the hospital allowed us to stay in our same room as a guest that night since Eli was still being treated in the NICU.  We would have been able to stay there as a guest as long as Eli stayed in the NICU and as long as they didn't need our room for another family who had just given birth.  However, that night while I was visiting with Eli after delivering the breast milk that I had finally started producing, I realized that he was not getting the best care that he could be getting.  The nurse was frustrated that his dressings kept falling off of him and that she couldn't keep his pulse ox on him since his skin was so slippery from aquaphor.  Eli hadn't been fed in over 12 hours because the day shift nurse said it was too painful for him to eat.  After returning to our room that night I sat up for the next two hours bawling about what to do for Eli.  I didn't want him to stay in a hospital where they didn't know how to care for him but I also didn't want him to be transferred to another hospital further away from where we live with no family around to stay with while he was there. My hysteria woke my husband up and he sat and held me as I cried about my concerns and fears.  It didn't help my emotions that earlier in the night I had gotten on our Ipad and saw all the links my husband had opened about EB and saw a blog about a baby boy who died at 3 months old due to having EB.  The overwhelming fear of losing another baby was too much for me to handle coupled with the worry about what we would do if Eli was transferred to another hospital.

When the doctor came in that next morning we didn't have a chance to discuss our thoughts on transferring Eli to Cincinnati Children's Hospital because we were told that there was nothing more he could do for our son and we needed to go where the specialist were.  We agreed. It was time to seek out the professionals who are among the world's leaders for treating this disease.  That day we worked with the social worker to get on the waiting list at the Ronald McDonald House since Eli was going to be in a pod with other babies instead of in his own room, but at the last minute before leaving the hospital we got a phone call stating Children's was able to get Eli his own room so I could stay in the room with him.  One of our prayers had been answered and it was one less burden we had to worry about.

Eli and I lived at Cincinnati Children's Hospital from August 12th to August 28th. He was initially sent there with the assumption that he needed a g-tube since he was not eating.  On the first day that Eli was at Children's, we worked with the speech and occupational therapists who got him a Haberman bottle to try out.  The Haberman bottle is used for kids with cleft palates but due to the softer nipple it works well with EB kids because it creates less friction and blistering in their mouths.  Eli immediately began sucking down milk when we started using this bottle.  He was eating 1-1.5 ounces every 2-3 hours.  He did so amazing his first two days at Children's that I thought we would get to go home at the end of the weekend. There was no need for a g-tube when he was eating so well. Unfortunately, things didn't go the way I had hoped.

On Eli's second day at Children's Hospital he got a PICC line to replace his umblical IV since he was still getting IV nutrition in addition to what he was taking in orally.  Within 24 hours of getting his PICC line Eli spiked a fever and stopped eating as well as he had been.  He had contracted a bacteria infection in his blood stream and in his PICC line.  He was started on IV antibiotics and we were told he would be on them anywhere from 5-14 days.  Over the next couple of days every morning Eli had to get his blood drawn for cultures to see if there was any more bacteria growth.  The doctors informed me that he would most likely be on antibiotics for 14 days AFTER his first negative blood culture due to the type of bacteria that he was on.  I was devastated.  There was a possibility that we would still be in the hospital when Eli turned 1 month old and I would have to return to work shortly after getting home with him.  Fortunately Eli only had bacteria in his blood cultures the first two days they were taken!

We were at Children's Hospital much longer that I had anticipated and certainly much longer that I had wanted.  But while we were there we learned a lot and became more comfortable advocating for our son.  We got to meet Dr. Lucky who is a world-renowned dermatologist who treats EB patients and learned how to do Eli's dressing changes with confidence.  Dr. Lucky made us feel like there was nothing that we could do wrong with Eli despite what the research states is best for kids with EB.  She encouraged us to try normal clothing and blankets and diapers and wipes.  We experimented with different size diapers, elastic out and in of the diapers, aquaphor on the whole diaper or just parts of the diaper.  Everything was trial and error but we were never made to feel as though what we were doing was wrong.  Once Eli got his PICC line in we were able to bathe him for the first time....he was a week old when he got his first sponge bath.  A few days later he was able to get in a bath tub and loved being in the warm water.  We weren't able to put any clothes on him until his last night in the hospital after his PICC line came out but that day was the happiest day for me since he was born. My only complaint of our entire stay at Children's was how long it took for a doctor to finally discontinue his order to have a pulse ox on him at all times.  The pulse ox was the biggest pain ever-it would hardly ever stay on him longer than 30 minutes before falling off and if they did find a spot it would stay on they had to move it a few hours later and could never find a new spot for it.  The nurses were constantly in the room messing around with the pulse ox and irritating both me and Eli as a result.  But the worst part was when Eli's skin was damaged by a nurse putting the pulse ox directly on his skin.  One area was so bad it was gushing blood and the nurse practitioner thought we would have to call in plastic surgery to cauterize Eli's vein to get the bleeding to stop.  Thankfully we figured out a way to wrap his arm to get the bleeding to stop and skin to heal on it's own.

While we were living in the NICU I had days where emotionally I felt strong and confident in my ability to be this precious little boy's mother and other days where I felt exhausted, scared, and angry. I only slept at home three nights in three weeks.  I hated leaving our son in the hospital alone.  It felt like we were abandoning him.  The day we got to bring Eli home was such a happy day for me.  Since we've been home it has been challenging both emotionally and physically.  Alex and I have struggled to figure out a way to keep us both sane and not exhausted.  I've had days where I cry all day long because I haven't been able to do things with our child that I thought I would be able to do during my maternity leave.  Our days are consumed with feedings, diaper changes, and 2-3 hours of bath time and dressing changes.  It seems like Eli's skin has gotten worse since we have gotten home and simple things like running out of Pamper's wipes and using Huggies has caused major issues that is taking days to heal.



We continue to request prayers for Eli and our family.  We have not received the results of his genetic testing yet to know which type of EB that Eli has.  Our prayer is that his is a mild form of EB and that he will not have life long effects from this terrible disease.  We are incredibly blessed with the amount of support we have received from the financial donations, care packages with food and medical supplies, meal deliveries, and help with cleaning our house.  Alex and I often question God's plan since it seems as though we can't catch a break anywhere.  But at the same time, God lead me to start writing my blog almost two years ago and it has created the largest and most incredible support system for us.  God is providing us with what we need to care for Eli.  He chose us to be this little boy's parents.  He has given us another challenge and although at times I've cursed God for not giving us the healthy baby we expected which has caused many emotional breakdowns on each other, I know this will eventually strengthen us even more.