Day 5 Time Well Spent: Skin-to-Skin Contact Another Mommy First

As predicted, I did not have a good night’s sleep. I tried to sleep. I tried to get rest knowing that I would need all my strength to get through the next day, but sleep, rest and peace of mind eluded me.

Just recalling the very recent memory of holding my little girl made my heart dance with joy. But then the thoughts of what my baby boy was going through made my heart sad. So my heart was a bit schizophrenic with emotions.

But the really big thing that made me lie away with anxiety was that I would be discharged in the morning. I would be going home without my babies. After almost ten years of trying to get pregnant, four months of bedrest and anticipations, seven weeks of being confined to a hospital bed and hoping that they wouldn’t come early, and five days of watching my children struggle to breathe and live, I was now expected to go home with nothing but a scar from the emergency c-section. Oh, yeah and my giant heavy heart.

So yeah, sleeping was not on my agenda.

I made my way over to the NICU just before the change of shift began. The night nurses were getting ready to go home and the day nurses were coming in to get updates on their tiny patients that they would be caring for during the next 12 hours.

My little girl managed her breathing overnight by continuing to breathe 21% oxygen.

I was so relieved to hear that she did not need to go back on the C-PAP to help her breathe.

My boy was stable, but barely. It had been only 48 hours since they inserted the tube into his tiny little chest to alleviate the pressure that was building in his chest from the hole in his lung. It was still too early for the hole to have healed. His bilirubin numbers were creeping up. He still hadn’t had a bowel movement. But then again, he still hadn’t had any nourishment other than the enhanced IV. He was also losing some weight. Losing weight is normal for most newborns, but it can be devastating for a premature baby who is already underweight.

I told the nurse that I was sad because I would be going home later that day and I had wanted to hold my daughter a little more that morning. The nurse had asked me to give her a moment because she had to take care of something and she scurried off.

The next thing I knew she was struggling with a screened partition.

“Mrs. Quinn, we have a very special surprise for you. Your daughter is strong enough for skin-to-skin contact. Remove your top and you can wrap this blanket around your shoulders.”

I could hardly believe that I would be able to truly hold one of my babies, literally, near my heart. This should have happened 5 days ago, moments after they were born. That experience was robbed from all of us! They don’t know the sound of my heartbeat from outside of the womb, they don’t know my scent, my touch, my kiss. We never had a chance to bond. And that killed me. All of that had been stolen from us.

While this wasn’t the same, there was no way that I was going to squander the opportunity to begin an inconsistent and jagged bonding experience with my child.

After a few minutes of adjustments, she pulled my daughter out of the incubator and placed onto my bare chest.

She felt so warm and so tiny on my bare bosom. She snuggled her little body into a comfortable position. And there she rested for the next 20 minutes.

For the first five minutes I was a basket case! I worried about the monitors and kept a close eye watching her oxygen saturation levels, heartbeat, temperature and respiration. Much to my amazement, her numbers actually improved. When I saw how relaxed she had become by reading the numbers on the monitors, I began to relax to0.

I remember thinking to myself “So this is what a mom is supposed to feel like.” For those 20 minutes, only she and I existed. There were no nurses running back-and-forth, there were no other babies in the NICU and they were no beeping machines and no flashing monitors . It was just her and I simply sitting there spending time with one another.

There are no words that can express this feeling that I felt. Suffice it enough to say that I felt complete and rejuvenated.

This was heaven and I was in love.

But soon, my time was up. It was time for her to get back into her incubator. I felt a pang of sadness as they moved her back into her little box. But I was suddenly overcome with sheer exhaustion.

I felt utterly and completely exhausted. I NEEDED to get back to my room and lie down.

I stopped by my son’s incubator before I left the NICU. I longed to hold him in my arms, I longed to see his tiny face, in it’s entirty without any tubes and wires. I longed to hold him close to me and snuggle with him as I had snuggled with his sister. I whispered that he needed to hurry up and get better because his mommy wanted to hold him.

I groggily shuffled back to my room, it was barely 8AM.

As I tucked myself back into my hospital bed, I could still feel the outline of her little body on my chest. I wanted to hold on to that feeling forever.

As I drifted off the sleep, I had a sneaking suspicion that she robbed me of my energy. I had never felt so unbelievably exhausted. But it was a good exhaustion. And I drifted into a very deep sleep.

Day 4.3 A ‘First’ for Mommy: Holding Our Daughter For The First Time

Many parents usually chronicle their baby’s firsts. They take note of their baby’s first tooth, baby’s first haircut, when the baby first learned to crawl, walk, baby’s first words, the list goes on.

As a NICU mom, we chronicle other firsts.  The first time we get to see our baby, touch our baby, hold our baby.  These may seem like insignificant events to a typical mom. But to a NICU mom, these become treasured and cherished moments that are seared into our brains and into our hearts.

I left the NICU with my sister and sent her home to be with her husband.  I wanted her to enjoy her pregnancy for a long as possible.  She needed to get some rest and the last thing that I wanted, was for her to end up having her baby prematurely too.

I forced myself to endure another torturous session with the lactation consultant.  I partook in the ritual known as pumping and dumping.  There was still fresh blood being pumped out of one breast so it had to be discarded.

My husband tried to encourage me to eat dinner.  He earnestly tried to entice me into eating by reminding me that the nourishment would improve the quantity and quality of my breast milk.  But I was not hungry.

We decided to go back to the NICU to visit with the babies for a little while longer before he had to go home.

We both knew that we would both not be able to sleep that night. It was the night before I was to be discharged from the hospital. Leaving our babies behind.

We were met with two surprises in the NICU.  The first surprise was that our son’s condition was deteriorating. He was losing weight, he was not pooping and his bilirubin levels were elevated.  They now had him under the ultraviolet light.  And he was just so small.  I stood near his incubator my hand touching the top of incubator as a nurse updated us on his condition

Refusing to let me see him cry, my husband walked away from me. He went to check on our daughter.  And he was met with a different kind of surprise.

“Parker! Parker!  Come quick.”

And there she was.  A beautiful baby girl.  OUR beautiful baby girl.  She was an amazing sight.  She was off of the respirator.  I could see her whole face. To be able to see her entire face, in it’s totality, was truly a beautiful sight to behold.

Her tiny face was the size of an orange.  Her cute little face was pink and she had bright red lips.  She had two itty-bitty holes for her nostrils.  Her nostrils were stretched out due to the insertion of the CPAP up her nose.  But, there she was, beautifully perfect and breathing on her own.  What an amazing sight!  What a miraculous gift!

A new strong emotion came over me.  A new flood of tears filled my eyes.  But they were tears of joy.  Pure joy.

My husband was so excited.  “This means we can hold her!  This means we can hold her right?”

Then he looked at the nurse, ”Can’t we?”

I could hardly believe it.  The moment was too much for my heart.  It was both rejoicing and breaking at the same time.

I was actually going to hold one of my babies!

The nurse got me a chair and then started the delicate procedure of retrieving my baby out of the incubator while trying to be careful to not disconnect the remaining wires and tubes that were connected to her body.

I sat there nervously clinging to my husband’s hand.  Both of us had palms that were wet with nervous sweat.

I was speechless.  I did not know what to say.  My husband had asked all the important questions: how long had she been breathing 20% oxygen; how long had she been off of the CPAP before we got there; what were the chances that she would have to go back on the CPAP.  But the most important question of all was how long would we be able to keep her out of the incubator and in our arms.

The nurse had explained that she was at 20% oxygen for probably half the day. She had suffered a few minor apnea episodes.  An episode occurs when the brain forgets to tell the body to breathe.  The thing to look forward to was the fact that she had recovered from them relatively quickly.

They had removed the CPAP about 40 minutes before we had arrive into the NICU.

And although the nurse wished that she could tell us that we can hold our baby for as long as we had wanted, she said that we couldn’t hold her for more than 10 minutes. It was important to keep her body warm.  Premature babies have great difficulty in trying to regulate their body temperature.  This causes them to burn calories and lose weight.

The nurse gingerly handed my beautiful baby girl into my arms. And then she passed the dangling wires into my husband hands.

It felt so odd and beautiful and wonderfully strange to be holding MY OWN CHILD.

After almost a decade of infertility treatments, here I was holding my.own.child.  It was a moment that did not require words.  My heart swelled with love.

Being conscious of our limited time with her, I asked the nurse to take her back to pass her to my husband so that he could hold her for his first time too.  This was the first time that I had wished that I had a camera to snap photos of this spectacular event of our lives.

His eyes were moist with love and joy.  He was nervous holding his daughter.  She was so tiny and felt so delicate.  He nervously shifted in the seat while holding her.

When our time was up, he handed her back to the nurse.  We were not sad to have to give her back.  We were both fulfilled and more than satisfied to have been blessed to have been able to hold her for as long as we did.  As we left the NICU, we whispered to our boy, “Come on little guy, get better so we can hold you too.”

We said goodnight at the elevator.  We were both serene and happy.  We got to hold our little girl.  And that was all that mattered.

Day 4.2 – A Sister’s Bond

My sister magically appeared by my side. She was gently rubbing my back while stifling her own tears.

“What are you doing in here? I thought they said only allowed parents and grandparents to be in here.”

She replied, “Since you’re by yourself and mom is not here yet, I told them that I was taking the place of mom. Besides, I don’t think they would have the heart to turn away a pregnant woman.”

I dug my head into her chest and sobbed “Thank you.”

My sister and I were pregnant at the same time. Our due dates were within a couple of weeks of each other. We hadn’t planned it that way but we were both so happy to be pregnant at the same time.

We had planned on navigating pregnancy and motherhood together. We had already known that I would have one boy and one girl and she chose to not know the sex of her baby. It didn’t matter because no matter what, boy or girl, her child would have an instant companion. We had planned on sharing toys, clothes and mommy duties. We were supposed to go furniture shopping together and choose items for our registries together. We were looking forward to shopping and eating our way through pregnancy.

But I abandoned her very early on. I was placed on strict bed rest at 19 weeks. Then hospitalized at 24 weeks.

Now here I had delivered these babies a little more than two months ahead of schedule at 31 weeks.

I cannot imagine the fear that she must have felt in her heart coming to see me and my babies. She had to be wondering if her child, who was still growing in her belly, looked the same way that my children did. She had to be wondering what would she do if she were in my shoes.

I urged her to leave the NICU. I told her “Don’t spend too much time in here. It’s very sad in here. You are pregnant you shouldn’t be in here. This place to too depressing. You should be out shopping, eating and getting pampered.”

She told me that there was no other place that she wanted to be except by my side.

After several minutes of peaceful silence, she asked, “Parker, please don’t get mad at me. I want to ask you a question. I know you’re probably not thinking about this. But do you want me to take pictures of your babies?”

“No.”

“Okay.”

“No. I do not want to remember them like this.”

“It’s okay Parker, I understand. I probably would not want pictures either. But I don’t want you to have any regrets later on thinking that maybe you should have and you didn’t think about it at the time.”

“No! No pictures! They do not make me happy. I don’t want to remember them not being able to breathe on their own. I don’t want to remember all these wires and machines and tubes. I don’t want to remember how to tiny and frail they are. I don’t want to be in this situation and there is nothing that I can do to change it. So I certainly don’t want to remember and relive it through pictures.”

“Parker, it’s okay you do not have to explain yourself to me. I know it’s not easy. I understand.”

“I.Can’t.Name.Him.” I sobbed.
“And I feel awful about it. We have had her name picked out for the longest. But we cannot agree on a name for him.”

“Parker, do not let the family pressure you into something you are not ready to do. He is your baby. You do what you feel you need to do for him and with him.”

“It’s not that. I just feel so awful looking at the tag on his isolette and it just says Baby Boy Quinn. And I’m so embarrassed because every day the nurses asked me if I have chosen a name for him yet. And I just can’t do it. I just cannot give him a name just yet.”

“Then don’t. Take your time Parker.”

“What is his life going to be like? Is he going to live past these medical problems? It’s only been four days since he was born and look at how much he has already endured.”

“Yes, without any doubt, he has been through a lot. And you have every right to scared. But you have been through a lot too. Parker, he is strong, and he is a fighter, and he is still with us, and you are his mother. You are strong, you are a fighter. You survived nearly 10 years of infertility treatments. You suffered through too many painful and emotionally draining medical procedures to get pregnant. You survived the prison of sorts for the last seven weeks been subjected to terrible hospital food, poking, probing and endless monitoring of you and the babies just to keep these babies in you. And you did it with such grace, presence and gratitude. But you survived! And you here you are, standing here next to both of your babies. You are strong they have no choice but to be strong to. It’s in their DNA. His name with come to you when the time is right. And when it does, it will be a name most fitting for who he is and who he will become.”

I hugged her and thanked her again.

Lessened learned: Is solace anywhere more comforting than in the arms of a sister ~ Alice Walker

Day 4.1 – A Twin’s Bond

I needed a break from the remaining somber faces in my room. Our family had come to support us but it was a bit overwhelming for me.

I buzzed the NICU intercom and they let me in.

They had separated my babies. They were no longer side-by-side.

My son was now the first incubator that could be seen the moment anyone entered the NICU. He was right next to the nurse’s station. He had a front row seat in the NICU where the nurses could keep a super watchful eye on him.

There was another baby that separated my children.

My daughter’s incubator was right where it was the day before.

The atmosphere was awkward. The nurses barely made eye contact with me. They told me that he was holding his own but could not give me any indication if that was a good thing or not.

I shuffled over to my daughter’s incubator and I sat on the stool next to it. I put my hand through the little hole and I held onto one little leg. Tightly.

I told her while she was his little sister, she needed to keep an eye on her big brother.

The not-so-nice nurse overheard me talking to my daughter and chimed in. “Don’t worry Mrs. Quinn your daughter has it covered. Yesterday, all of a sudden, she began fussing and wouldn’t quiet down. She made quite a ruckus. We went over to see that she seemed agitated, yet it seemed that there was nothing wrong with her. But just then, your son started going into distress. It was like she knew that he was going to need our help so she called our attention before he got bad.”

To me, that.was.profound.

Without making eye contact I asked her “Do you think she knew her brother was in trouble?”

The nurse paused and said “We see it happen a lot. It’s like the stronger twin starts to fight for the twin who is in trouble. It’s like they want their energy to help the weaker twin. It’s a unique bond that I don’t think anyone but twins will ever understand.”

I whispered “Thank you.” to my daughter and hung my head down fighting back more tears.

They were literally in the fight of their lives and they were already watching out for each other.

Lesson learned: Never underestimate the power of the bond between twins.

Day 4 – What’s In A Name?

While we already had agreed on a name for our daughter, naming our son proved to be quite the challenge.

For various reasons, many of them quite silly, we just could not agree on a name for our little boy.

The day they saved my son’s life by inserting a chest tube, the nurses had asked me if we were ready to name our son. Sadly we were not.

Looking back now I think that I was very reluctant to name my son for fear that he may die. I do remember thinking that if I uttered his name, I may only be able to sing it once and then lose him forever. Pathetic and selfish I know.

I know it sounds utterly sad and ridiculous but looking back, I really do think that that is where my heart was.

Our family kept vigil with us while we waited to hear updates of my son’s condition. The topic of his not having a name came up in conversation.

I recall getting very defensive because we could not agree on a name for our first born child. I remember breaking down and accusing my family of judging. I remember telling them “How dare you judge me! None of you have ever been in these shoes. You all had healthy, full term babies who went home with you in a few days. None of you had to leave your baby behind in the hospital not breathing on his own! None of you will know the pain in my breaking heart of how close he is to not being able to coming home at all! What if he doesn’t make it? How am I supposed to go home if he doesn’t make it? I am being discharged home in two days with no babies! I am going home to an empty home without my children. My family is being split up. Half here at the hospital and half at home. Naming our son is none of your business, so keep your opinions to yourselves and do not worry. He will have a name when we are good and ready to agree on one!”

It was intense time.

I am not proud of the things that I said. And I am not defending my words. But I remember being so scared and alone because no one truly knew what I was going through. All I know is that by the time I was done with my hysterics, quite a few family members left my room in tears.

Frantic – Surviving My Premature Baby’s First Operation

My husband arrived about 20 minutes after my frantic phone call. I was painfully pacing the room.

We kept asking all those terrible, anxiety filled questions one asks when waiting for someone who is in surgery.

Why did this have to happen? he is only 3 days old!! He’s a premie, he is too fragile for this!! What is taking so long? I wonder if they even started yet. How long is the surgery supposed to be? Were they going to operate right there in the NICU or do it in a regular operating room? The baby is so small, can he even handle anesthesia? What if something goes wrong? How will we know? What the hell is taking the doctor do long? When will we get an update? How long will his recovery be? This is a huge operation and he is so small how will this affect him down the road?

We decided that we would call our own parents and explain that our 3 day old baby, who was born too early, was undoing an operation to fix a hole in his lung and ask them to pray for our baby. It all seemed too unreal to say all of that. Both of our mothers offered to spread the news to our siblings so that we wouldn’t have to repeat the awful news.

Our siblings and parents started arriving at the hospital in spurts. Everyone was trying to be cautiously optimistic and encouraging. No one in our families had ever gone through something so dramatic. No one had any experience, information, statistics or stories to share. Or if they did, the outcomes were probably not positive and they chose to keep those stories to themselves.

After what seemed to be an eternity, the doctor entered the room and reported that the surgery was a success. The latest x-rays revealed that the pressure had decreased in the baby’s chest cavity and his heart and other lung are slowly moving back to their respective places, but our son still required a lot of oxygen.

Everyone in the room breathed a huge sigh of relief. But the doctor did caution the next 24 – 48 hours were precarious and he would continue to be monitored closely. The doctor explained that they inserted a chest tube between his 2nd and 3rd rib to alleivate the pressure. He could not determine how long the chest tube would need to be in place. He made it clear that I would not be holding my son anytime soon.

Naturally, I had wanted to know when could I go in to visit him. The doctor advised that I keep my visit short and to avoid stimulating him in any manner as it would be best if we didn’t excite our son. Even the sound of our voices could prove to be too much stimulus for him.

The excitement would make his heart beat faster and his respiration would increase, which was not an ideal situation for someone who was in his delicate condition.

My husband and I followed the doctor back to the NICU.

Reliving these memories is just too painful.

My husband stood by my side as I sat on a stool by our son’s incubator. My husband and I didn’t speak. There were no words to be said. We visually soaked in the sight of our son.

I subconsciously held my breath as I inspected all of the bruises on our son’s tiny body. He sustained these bruises during the weeks of nonstop preterm contractions my body subjected us to. I was hospitalized for 7 weeks prior to their traumatic birth via c-section. Those bruises covered him from head to toe. Thankfully they were starting to fade into a tinge of yellow as they were healing, but it was still painful to look at.

While the swelling in his right arm had diminished greatly, it was still swollen and restrained by a board so as to avoid further nerve damage by involuntary movements and reflexes.

My eyes focused on the new tiny tube that was now coming out of his chest. That tube was saving his life.

He looked broken, bruised and battered. And this exactly how I felt.

With tears streaming down my face, all I could think was, “He is so small. Why must he suffer through this?”

Lesson learned. The greatest gifts come in small packages.

Prepping for Surgery: The Chest Tube

I nervously tried to dial my husband’s phone number. I had to hang up three times because I kept misdialing the number.

Once I heard the chipper sound of his voice I started to sob hysterically.

“Please honey. Please, please come here I cannot do this alone. It’s our son. There is something wrong with his lung. There is a hole in his lung…and it collapsed… and they need to do an operation… and I don’t understand any of this… and I need you here with me. You need to be here. You need to come. I can’t go through this alone.”

In the middle of my sobbing and pleading, the chief of the NICU appeared at my door. He was very grim-faced. He and I locked eyes. I did not want to lose his attention. I didn’t even want to blink for fear that he would disappear and I wouldn’t be able to ask him anything. Without losing eye contact with the doctor, I put down the receiver of the telephone and accidentally hung up on my husband in mid-sentence.

The doctor wasted no time and began explaining why he was in my room. The doctor explained that over the course of several hours my son’s oxygen requirement climbed from 40% to over 70%. The doctor ordered a chest x-ray and the x-ray revealed that my son’s heart and other lung were being pushed to the other side of his little chest and that his chest cavity was being filled with air.

He explained that my son had what is known as a pneumothorax. In simpler terms, it meant that he had a hole in his lung. It is also known as having a collapsed lung.

He further explain they would have to do surgery and insert a small catheter between his 2nd and 3rd ribs in his chest to help relieve the building pressure.

The doctor nervously shuffled the papers he was holding in his hands. I hadn’t noticed the papers.

They were important papers. He presented the forms to me asking for consent to allow the doctors to perform the surgery to save my son’s life. Then he outlined the risks involved.

Looking back it was a no-brainer. But I was so scared that I actually hesitated.

The thought of them cutting my son open scared the bejunk out of me. At that moment, it was only my signature that mattered. And I was incredibly scared to sign the papers. I was scared because I would be solely responsible for what ever happened to my son after they did the operation. If the operation was not a success, a review of his medical chart would reveal that I signed his death warrant. How could I do that?

But then reason took over. And I knew that if I did not sign the paper my son would indeed die.

So I took a deep breath and signed my name.

Lesson learned: Sometimes it is all up to you and you alone are left to make the biggest decision of your life, or your child’s. And it is one of the scariest things to do on your own.