September Neonatal Intensive Care Awareness Month - Daddy's Thoughts on NICU

This is Chase Leehan and while I am not a mother I am A Father Squared and husband to the author of this blog.  I thought I would post this to this blog to write a little about our experience before and during the NICU as September is NIC Awareness Month.

Every parent dreams of having a healthy baby. Unfortunately for some families this dream is not a reality. September is Neonatal Intensive Care Awareness Month. NICA month is designed to honor these families and their infants while encouraging services to meet their needs.  Join me and thousands of others in spreading awareness this month. Start by visiting www.nicuawareness.org

It was 9 long weeks of tortured goodbyes at night. My heart was torn out and I left it with my small, fragile, helpless baby boys every single night. I too, was helpless.  Seeing them for the first time and more importantly than that hearing them for first time was the happiest most exalting.  The pregnancy of our twins was rough; really rough. We were on scalpel’s edge for 2 weeks near the end of the pregnancy as we faced the possibility of surgery.  My wife’s Perinatologist in Houston was sure that she would have to have the surgery or we would lose both boys. 

                By the grace of God  (and Christina following the doctors instructions to a “T” and eating a metric ton of Greek yogurt and other protein. we didn’t have to have the surgery and came back home from Houston after 2 grueling weeks.  So, after half-way preparing myself for worst-case scenario that I might not ever get to see my boys or I would but they may pass shortly after because they were too early. It was such an amazing feeling to hear them cry. I have heard people describe this feeling by saying that it is indescribable and overwhelming. I now see what they meant and agree. It is beyond mere mortal words.

                So too is the feeling, however of being perched so high atop the peaks of heaven in mere minutes when I came crashing down back to reality with the anesthesiologist asking my wife if she is ok and her reply was “No...I feel a lot of pressure and can’t breathe very well”. She was fixed up quickly by the anesthesiologist.  Our boys could not be fixed up so quickly, however.  There were a team of 4 people working frantically around each baby.  I could hear suction and sticky mucus being sucked away and gasping cries in between. When I heard silence I got extremely worried.  I watched as the team measured and weighed and put a tube down their mouths because the silence I heard was my little, red, way-to-early son’s not breathing.  As I stood there helpless, battling the fall to reality trying my hardest to stay aloft on the cloud of euphoria that I was just on, I remember a strange happening.  Dr. Smith, my wife’s Perinatologist, asked if I wanted to see the placenta because being interested in medicine I always had a million questions for her and she thought she would demonstrate an answer for me.  In my desire to withdraw from situation a little I said yes. Then I finally fell all the way to the hard unforgiving surface of reality when the nurse practitioner who was working Aedan asked if I was ready to take him to the NICU.  I said yes was just going to follow her, but she said here and show me how to hold my baby for the 1^st time.  I went and took pictures of the boys and got their weights as the nurses talked to me about how things worked in the NICU and what would happen.  The next few days were very tiring but great because we were always so close while my wife was still in the hospital.

                My wife and I learned a lot about ourselves and truly tested our limits of what we could handle.   After such a hard and anxious pregnancy with Twin-to-Twin Transfusion Syndrome I couldn’t help but think of a quote from Mother Teresa “I know that God will not give me more than I can handle, but I wish He didn’t trust me so much”.  We were fortunate to spend many days with boys in the NICU. At first when the “rules” prevented us from holding them all the time it upset me. I didn’t want other people telling me when and what I could do with my child. Plus all I wanted to do was hold and comfort my babies. Throughout the 9 weeks I did resent the fact that we were always told what to do and were on someone else’s schedule.  Feeding was a mix of emotions.  It was so wonderful because it was a chance to hold the boys, but it was so hard to have to put them back in the isolettes or in the very least it was frustrating if the boys were no drinking well from the bottle that according the “rules and someone else’s schedule” we hated to give up on them after 30 minutes and feed them using the tube down their noses.  I also felt like a failure when I couldn’t get them to eat from a bottle.

                I am so grateful for all the staff that took care of them. Especially two of the staff in particular; Carol Ann, the boy’s primary nurse and Debbie Bradley their occupational therapist. They were so critical in their care and getting them home to us as healthy as they are.  And they may not realize it, but they even cared for my wife and me even though we weren’t their patients.  I began to realize the longer that we were there that we had become the favorite parents because of what they said about how we took care of our babies and each other, and were always there. They also did things like always made sure that there was at least one comfy chair to sit in. The NICU that the boys were in runs on a limited budget. So for things like comfort of non-patients it is largely up to donations for things like chairs so they mostly had uncomfortable, hard, back wrenching rocking chairs. So you can imagine that it was difficult and a sort of battle between my heart and my body after I had been holding a baby for a while.

                It was such a long ordeal while we were going through it. And many days, especially in the beginning when the boys were on ventilators and things seemed more frightening, I didn’t know if I’d make it. The nurses helped in that area too. They said one day you will look back at this and it will just seem like a distant memory, a little flicker of time and it won’t seem so bad. It is true somewhat. It’s a strange duality; it stills seems like it lasted so long and at the same time short as if it flew by. I still remember the fear, pain, and anxiety, but it is a little fainter.

                Having the Carol Anne nurses and Debbie teach us how to take care of the boys was invaluable. Other people have a baby in the hospital and take their baby home after about 2 days.  Then they are left totally on their own; responsible for a human being. We had experts teaching how to be good parents for 9 weeks. For that I am thankful.  Debbie was such a blessing and we believe one of the biggest reasons that the boys got to come home as soon as they did. Their biggest hurdle and last one (except for Conor he was/is our stubborn one and would not let go of the need for the tiniest amount of oxygen) seemed to be eating.  Debbie was so good with them it was like her hands had been touched and blessed by God to work His tiny precious creations.  She was amazing and got them to finish their bottles almost every time. We on the other hand struggled a lot.  Carol Anne was very patient with the boys and so kind and sweet to them. You could tell that if she could, she would take them home in a heartbeat. But we learned much from them and did the exercise that Debbie wanted the boys to do religiously; even after going home. I think that is another reason they are doing as well as they are.

                Now it has been just over a year since we have brought the boys home. What a wonderful year it has been. Everyday has been a blessing and we thank God every night for it when we say our prayers with the boys. This was routine that started in the NICU, because we prayed that God watch over our baby boys overnight while we were away from them. We had to trust that He had taken care of all of this far. It still made those nights very difficult just to walk out of their rooms.  I prayed for courage to walk out. I prayed that the night nurses would be on their best game. I prayed for anything that I left out.  That routine has continued to our house now that we actually get to tuck them in their own beds. We took every opportunity that we could in the NICU to hold and love on them and that routine is one thing that will never change as we watch them grow up.

Twins?!?!? How do you do it?

Anytime I tell someone that I have twin boys, their response is always pretty much the same- "Whoa, how do you do it?".  I usually just give a little chuckle and tell them that it's the only thing that we know, so we feel like it's normal.  It's  true for the most part.  Chase and I are first time parents, so we don't know what it's like to have just one baby.

The way I see it, raising babies is a bit of an art, whether it be 1,2 or 6.  Luckily, I only know what it is like to raise 2.... I don't think I'd be great at raising 6.  Every parent and every child is different and has needs and circumstances that may be different than anyone else.  There are two big things (besides the obvious, God's grace) that I believe have contributed to our parenting success so far:

1) Consistency/ routine
2) A village

The beginning....

Hi, I'm Christina.  Wife, pet momma, and new momma to twin boys. I've been told time and time again that I should blog about our twin adventures.... so here we go!!

I'd like to use this first post to give you some background on how we got to the place we are in today and hopefully give some insight into the reasons for some of our madness. This is going to be a long one, so I apologize in advance.

From the moment my husband, Chase, and I discovered we were expecting twins, our lives have been turned upside down, sideways and every direction in between.  Things were pretty smooth sailing throughout all of the first trimester.  I spent my days working,  resting and planning for babies.  At our 19 week ultrasound we found out that we were going to be the proud parents of little boys- we were so ecstatic!  I went into instant nesting mode and began registering, decorating , picking out names , etc.

At 21 weeks, our OB referred us to a maternal fetal specialist (Dr. Smith) for a routine exam since  pregnancies of multiples are considered high risk.  We were pretty excited because we knew that they used 3-D ultrasound technology and up to this point everything had looked pretty normal.  Come the day of the appointment, we were all smiles and laughs throughout the ultrasound and had a million questions lined up for the doctor when she came in.  Right way, we fired off some ridiculous question like "So doc, can we tell whether or not our boys are identical?".  We quickly knew something was wrong when she took a breath and said "We'll get to that. We have a lot to discuss today".  Over the next 30 minutes she unfolded our twins' story.  She told us that our twins had a complication called Twin to Twin Transfusion Syndrome (TTTS).  In layman's terms, it occurs when identical twins share a single placenta's resources unevenly.  Our larger twin (twin A) was getting most of the blood supply and had an abundance of amniotic fluid.  Our smaller twin (twin B) had little to no visible amniotic fluid.  The suggested treatment  was laser ablation surgery to attempt to create two separate environments for the babies. Success rate for the surgery was about 75%  and we were told that without intervention we had 0% chance of delivering two healthy babies.  The leading place for the surgery in the Midwest was the Texas Fetal Center in Houston. Within an hour we had a caravan of 7 people headed to Houston with us to try to save our baby boys.

The next few days in Houston were a living nightmare for Chase and I.   TTTS has 5 stages of progression based on symptoms.  We were considered stage II. We were told that twin B was the "donor" and was in a small sling-like amniotic sack with very little fluid. We were told that eventually, without enough amniotic fluid and blood supply,  his body would start trying to conserve resources for his heart and brain so his less important organs would begin shutting down.  Twin A had an abundance of fluid which was also dangerous because all of the pressure could send him into congestive heart failure.  Again, we were given heart breaking statistics.  We were told that there was less than 10% chance that we would have two living babies without medical intervention.  Even if they did live without intervention, they would almost certainly have severe birth defects.  If we did go into surgery, there was a chance of the placenta detaching sending me into labor or rupturing the amniotic sacks.  That chance was increased, because my placenta was anterior, which is opposite of 90% of the surgeries that they performed.  Instead of going in through the front, they would have to use a scope to guide them through my back.   At 21 weeks there wasn't much chance for survival if we had to deliver immediately because it isn't until 24 weeks that a fetus is considered to be at the age of viability. We were introduced to terms like: poly & ogli hydroamnios, genetic disorders, and selective reduction.  On top of the really scary stuff, we also found out that twin B had a small hole in his heart and an enlarged kidney.  Twin A had choroid plexus cysts on his brain.  All of these things sounded really scary, but were told that most of them alone were not cause for alarm because they normally resolved themselves.  However, together they could indicate a genetic syndrome like any one of the Trisomies. They wouldn't operate until they ruled genetic disorders out so they drew lots of labs and we were sent back to the hotel for a few days to wait it out. Desperate for something to do, I asked the doctor how I could help.  He recommended that I lay on my side as much as possible to increase blood flow and eat Greek yogurt at least 3 times per day.  Studies had shown that the increased levels of protein from Greek Yogurt or protein drinks increased blood flow in some TTTS cases.

Armed with my Greek yogurt I settled in and waited for the test results.  Thankfully, our families were with us to help get through the days.   Night time was a different story... overloaded with information and emotions I crumpled into the hotel bed and fell apart.  I couldn't bear the thought of losing one or both of our boys, and I certainly couldn't fathom choosing to give up one in the hope of saving the other. I stopped taking weekly baby bump photos and planning for the boys' arrival, because I didn't feel like I should be doing the normal happy things with the unknown still being ahead of us.  So, feeling utterly helpless, I surrendered to God.  I prayed that he protect my babies, I prayed that he give us the answers to the questions and decisions that we faced, I prayed that he give us strength to endure whatever was in store for our family, and I prayed that if it was in his will, he would let us come out of this with two healthy baby boys. I knew that it was harmful to the babies to be that distressed, so after a good, long, bawling prayer session I resolved to give it all to God and trust that His plan was in the works.  The same day, my cousin sent this quote to me "God didn't bring you this far to leave you".  How true!!!  I clung to those words like a lifeline for the next several months.
That night, in our hotel bed, Chase and I decided that we should designate the names that we had picked just in case the worse happened.  Twin A would now be called "Aedan" and twin B would be called "Conor".

All in all, we spent two weeks in Houston.  I started taking bump pictures and planning again because I knew that God had a perfect plan for us, and I just couldn't believe that it was going to be one that didn't include our boys.  At first, we were waiting on lab results and the "inevitable" progression into the next phases of TTTS. The doctor told us that in rare cases, mild TTTS, resolved itself. He had never seen it happen in a stage II that looked like ours. But then, we saw something wonderful begin to happen... each day that we went in for our ultrasound, things looked BETTER.   When we were diagnosed with TTTS, there was no visible fluid around Conor and 13cm around Aedan.  By the end of the two weeks, we had over 2cm around Conor and 11-12cm around Aedan.  We weren't out of the woods yet, but the doctors were scratching their heads and couldn't justify surgery without evidence that this was going to progress.   We went home to be monitored twice a week without undergoing surgery.  We could still operate up to the 26 week mark if things progressed to stage II or higher.

We continued to count down to 24 weeks.  We knew if we could make it that far, our boys would have a chance.  Right at 24 weeks I started having contractions and was sent to labor and delivery.  They gave me the evil, evil "bag-o-mag" that helped control the contractions.  NICU nurses came to visit us to give us the statistics for survival and prepare us for what a 24 week delivery would be like.  They told us that chance of survival doubled at 27 weeks and chances or a sever birth defect decreased as well.  After 4 days, my contractions were completely gone and the doctor was alright with me returning home.  We went back home with a new goal of 27 weeks.

Chase ran out of things to do :)

I kept up my strict regimen of bed rest and eating tubs of Greek yogurt.  My family graciously hosted a shower for us and designated a recliner just for me so that I could adhere to the bed rest guidlines.  Unfortunately, I went back into labor 12 days after being released the first time. This time, I was dilated to 3cm and my cervix was almost non existent... that meant I was in hospital bed rest jail until the boys were born.  We settled into our new hospital home and tried to pass the days.  The nurses cam in a few times a day to administer various medications and monitor the boys' stress levels for an hour (which is really difficult with twins).  Other than that, we were pretty much on our own.  We spent the days reading, watching endless hours of daytime TV, watching movies, playing games and chatting.  Chase pulled the foldout sofa next to my bed at night so that we didn't have to sleep across the room from one another.  Our friends and family came to visit regularly and my sister brought the dogs up to visit me in the parking lot!!  We couldn't have asked for a better support system.  We even crammed my room full of girls, presents, food and decorations so that I didn't have to cancel the baby shower that my friends had planned (although, everyone had to be rushed out, because it was tornado season in Oklahoma and the storm was headed right our way).  We weathered two rounds of tornadoes while I was in the hospital.  Fortunately, the hospital and our house were both spared.

The days turned into weeks and everything seemed to be looking good.  Our 27 week goal passed and we set a new 30 week goal.  June 3rd marked our 30
week milestone.  This was HUGE, it meant that our boys had a 98% chance of survival and there was almost no chance of birth defects.  That was pretty good compared to the 50% chance of survival that we were facing at 24 weeks!  We had our regular twice a week ultrasound and things generally looked good.  They said that my placenta was "looking old", which basically just meant that there were spots that had calcified. They also wanted to watch Conor because he looked border-line anemic.  June 4th started like any other day.  I logged into work remotely, took my morning meds and was waiting to eat breakfast when the nurse came in to monitor the boys.  After about an hour she came back and said that Conor's heart rate wasn't rising and falling like the would like to see. The nurses wheeled me over to our doctor's office so that they could look in via ultrasound.  Nothing looked too suspicious, but my doctor was out doing rounds so they wanted to talk to her before they let me eat or drink anything just in case. I started contracting a little because I was so nervous and wasn't allowed to eat or drink while I waited.  My doctor couldn't come to my room right away because she was delivering at another hospital that day, so she asked the nurses to check to see if I had dilated anymore.  The nurse pulled back a glove full of blood when she checked.  She told me that I was dilated to 5cm and she felt the sack with her fingers.  YIKES!!

Around 6 o'clock that night my phone rang, it was Dr. Smith.  "Hey Christina, how are you?  Are you ready to deliver some babies tonight?".  A lump settled in my throat.... was I ready?  Were the babies ready?  The nurses immediately started prepping me for a C-Section.  Everything was such a whirlwind.  I remember seeing my dad, being wheeled into the O.R.,  talking to the Anesthesiologist, seeing Dr. Smith, and holding Chase's hand.  Again, all I could do was pray for my baby boys as they operated.  I felt a little pressure when they cut me open, then lots of tugging.  A few minutes later they opened the curtain so that I could see our first baby being delivered.  It was the longest minute of my life.  I held my breath when I saw him lifted from my body.  He was so tiny and still.  Then, I heard the most beautiful sound I had ever heard- my precious Aedan screamed!  "Thank God! He's breathing!"  I burst into tears, looked at Chase, and said "He's crying!".  They carried him out of my sight and began delivering Conor.  He came out screaming!!!  At that moment, nothing else in the world mattered to me.  We had gotten both babies here!  An hour or so later, the doctors came to deliver the good news that both boys were stable.  They were 10 weeks early, so they would do some growing in the NICU, but they were likely to be just fine.

Aedan Ryan 3lb 11oz

Conor William 3lb 3oz

Our NICU stay lasted 9 weeks (63 days).  It was one of the most difficult times in our lives so far, but each day was a gift from God and we made the most of it as best we could.  I'm not going to reminisce about every detail of the time we spent there, but I will talk about it briefly (as brief as possible).

Conor 2 days old

Aedan 2 days old

  I got to see my boys for the second time the morning after I delivered them.  Chase was finally sleeping, so I didn't wake him.  The nurse wheeled me into to Aedan's room first.  He looked so tiny and frail.  He was in an incubator, intubated and under UV lights... and he was the most gorgeous baby I'd ever seen.  I was able to reach through a small hole and touch his tiny hand.  After a few minutes I went to see Conor.  He was even smaller!  I remember their rapid, tiny breaths and their bright red skin.  I remember the aching to hold them.  The next day we met Conor's intake nurse, Carole Ann.  She was probably one of the happiest people I had ever met.  We knew right away that there was something special about her.  Come to find out, she was so worried about Conor that she went home and prayed for him and even called throughout the night to see how he was doing.   Carole Ann was there the day that the boys came home with us and we still keep in touch with her today.  I was discharged from the hospital on day 4 of the boys' life.  I had no idea how hard it was going to be to leave that hospital without my babies. I think it was so difficult because we knew that it was going to be months before we had them home with us.

Storybook time!

Wearing our shades with Conor

Aedan snoozing

 As a mom, I felt inadequate almost every moment of the day when the boys were first born.  Everything I thought was natural and instinctual seemed to be wrong when it came to preemies.  The sensation of our touch was uncomfortable to the boys, so we couldn't comfort them the same way a full term baby would be comforted.  Many times, the only comfort we could give was sticking our arm through the incubator hole so that they could hold our finger with their tiny hands.  At first, sounds were unsettling to them, so our voices would raise their heart and respiratory rates.

My first time holding Aedan

Once we could hold Aedan (on the 3rd day), we learned that he couldn't be cradled on his back yet and he couldn't be stroked or jiggled because his skin and body was still too sensitive.  But, he did seem more relaxed during the times that he could rest on our chests.  Since he couldn't be moved much, we weren't able to switch and let the other parent hold him and we couldn't set him down and pick him up again if we needed to go to the restroom.  We only got to hold him once a day, so we made the most of it and held him until: his temperature dropped too low, it was time to check all of his vitals again or our bladders were exploding.  We finally got to hold Conor when he was 11 days old.  He still had the central line running through his umbilical cord, so we couldn't hold him until it came out.  The boys were still on so many machines, that they wouldn't fit in the same room.  While they were both on oxygen, we couldn't even hold them in the same room.  Chase and I alternated rooms each night and spent hours texting each other about what "our" baby was doing and cute photos.

We were at the hospital almost every waking hour, and when we weren't, we were calling to see how they were doing.  They were too young to know how to eat, so I just pumped furiously and took the milk to the hospital so that they could tube feed it to them.   The nurses became our saviors.  They cared for our boys when we couldn't or didn't know how to care for them.

The pacifier swallowed Conor

My schedule became: Waking up to pump @ 5am so that I could go see the boys before the nurse's shift change, coming home to shower, pump (every 2-3 hours) eat, take a short nap if i had time, return to the hospital @ 7:30am to settle in there for the day, take a dinner break with Chase during the evening shift change, return to the hospital to do the PM hands on (weighing, temps, baths, diapers, clothes change), then holding them and reading bedtime stories until it was our bedtime.  Once they could finally learn to eat by mouth, we had to work on building a suck, swallow, breath pattern so that they could come home with us.

We finally got to hold both boys in the same room!

The newborn hats looked huge

Tandem kangaroo holding

After weeks of practice, Aedan finally got it down! He was all set to come home on Monday August 5th as long as he could continue finishing every feeding by mouth throughout the weekend. We had prepared ourselves to only bring one baby home, because Conor didn't seem quite ready.  He would go an entire day eating by mouth, but then would tire out and wouldn't finish a single bottle for days.  I prayed for strength and guidance as we prepared to bring one baby home and continue visiting the other in the NICU. I also added a prayer for a tiny miracle for our Con-man :). That Saturday, we started to see God unfold another miracle before our eyes.  Conor finished bottle after bottle all weekend!!  By Monday, everyone was so surprised that they decided to hold Aedan's release off one more day to see if brother could keep it up.  Chase and I packed a bag on August 5th and headed to the hospital to spend our first night ever with our baby boys.  That night was a very emotional and tumultuous stay, but we made it through and got to bring our boys home on August 6th!!

We brought them home one week before their due date on apnea monitors, but that was the only piece of equipment that our strong little guys came home with.  A couple months later we found out that the enlarged kidney that Conor had on the ultrasounds has 0% function.  by the grace of God his other kidney is fine, so he is able to live a normal, healthy life.  They've been going steady ever since they came home and we have two happy, healthy 10 month old boys home with us today.  That is the short version of how we got our boys home with us.   Now it's on the the fun stuff!!! :)