Soon after they took Aaron up to the NICU, I was taken into the recovery/observation room. At this point, time really gets away from me. I was on morphine for pain control and what might have seemed like 2 hours was probably only 30 minutes, and what might have seemed like 30 minutes could very well have been 2 hours. While I was in recovery, Rich sent me a few texts telling me that they were having a very hard time getting an intubation tube inserted, and he sent me this photo of Aaron.

Because my first look at Aaron was so brief, I remember really staring at this photo.  I enlarged it on my phone, and I looked him over very carefully: his little hands, his legs, his chest…and just a peek from his right ear. I could tell from the hand holding his chin up that in this photo they were still working on intubating him. Rich later told me that it took them about 15 minutes to get the tube inserted correctly.  Sweet baby boy.  He went from the quiet, coziness of my womb straight into chaos and discomfort.

After spending some time in the recovery room, I was taken into my maternity room where I would spend the next six days.  It was on the second floor, and the NICU was on the 5th floor.  It felt so strange knowing that my baby was so far away from me.  My nurses spent some time monitoring my blood pressure, and when they felt it was stable enough I was rolled on a gurney to the 5th floor to see Aaron.

Lying in his isolette hooked up to a tube and wires was not the first meeting with my son that I had imagined.  I wanted so badly to reach in there and pick him up.  And seeing all that tape on his face was a bit disturbing to me, but it was necessary as it was holding the breathing tube in place. Without it, the tube would dislodge and he would have trouble breathing.

 

Despite the tape, his face was so beautiful to me.  I stared and stared and I didn’t care about any of his imperfections.  My eyes saw only what my heart saw.  He was just a perfect little baby. Except that he had an extra 13th chromosome in all of his cells.  It was hard to keep that fact out of my mind.  My sweet boy had Trisomy 13, and that meant that no matter how sweet and adorable he looks to me, his stay with us would likely be brief.

Our priest came later that day and baptized him.  We chose Rich’s brother Phillip and his sister Kathleen to be Aaron’s godparents.  These two were very supportive and connected to me during Aaron’s entire pregnancy, checking in often and praying for him.  It meant the world to me to have their love and support during that time.  I knew they loved Aaron very much, even before he was born.

Aaron wore the same baptismal gown that all of my children were baptized in.  It was first worn by me when I was a baby, and next by my sister.  Then all of my children and my sister’s children were baptized wearing it. I am so thankful that Aaron got the chance to wear this very special family heirloom, too.

Although it was done in a NICU of a hospital, Aaron’s baptism was one of the most sacred ones that I have witnessed.  As this very special baby was dedicated to the Lord and welcomed into His holy church,  I really felt the Holy Spirit surrounding us. I felt God telling me, “You did good, mama. Thank you for bringing this child of mine into the world. It’s all going to be okay. I will be with you.”  I felt such peace during the ceremony.   Peace and love.

After his baptism was over, I got to hold Aaron for the first time.  Just to get him out of the isolette and onto my chest took two nurses plus his respiratory doctor.  They had to disconnect him from some of the wires and the breathing tube, then carefully (and quickly) lift him up and out of the isolette and place him strategically onto my chest and then reconnect everything again.  Then all the tubes and wires had to be taped to my shoulder so that they would not shift and accidentally cause a disconnection as I held him.  The whole process was quite the ordeal and took several minutes.  But when we were finally settled, a curtain was drawn around us and I had my baby all to myself.  It was the best feeling ever.

Over the new few days I would spend time holding him skin to skin.  It felt amazing to hold him.  I ran my fingers up and down his back, and I held his little feet. I stroked his cheek and kissed the top of his head. To finally have him in my arms was such a wonderful feeling.   Most new moms cry when they first meet their babies because they are happy.  I can honestly say that I felt happiness, too, in meeting Aaron, so happy to finally have him in my arms. I cried happy tears. But my happy tears were also mixed with sad tears, because I knew my time with him was going to be brief.  I did my best to soak in every ounce of him while I could.

Aaron would lie so still and cozy on me for the most part, but every now and then he would try to lift his head and turn it to the other side.  But because of the breathing tube, he had to stay in one position.  So I would have to hold his little head still and tell him “no…keep your head this way” and I remember I felt so bad about that, about not letting him move about like he wanted to.  I hated that he had to have the intubation tube.  Hated it, yet grateful for it at the same time.   I would not have had the time I had with Aaron if it weren’t for the intubation tube.

Sometimes I would go in and out of sleep while I held him.  I was on many medications;  for my blood pressure, for my surgery pain, and also for anxiety (because they thought the continued high blood pressure might be the result of my emotions)  — the drugs made me tired, and they also kept me from feeling things fully.  I didn’t cry as much as I did the first day.  My emotions were numbed a bit.  For the most part I remember being peaceful and content, especially while holding Aaron.

The first health issue with Aaron was of course the fact that he was unable to breathe on his own. They knew it wasn’t for the lack of brain function because his body was trying to breathe, but more likely there was some kind of airway obstruction.  They suspected that it was a malformed airway because the MRI they did shortly after he was born showed that his spine split into a “Y” at his neck.  This could have caused his airway to form incorrectly.  Or he could have had what is called a “floppy airway” in where the trachea is soft instead of hard cartilage, and it collapses when the baby tries to breathe. Had we not intubated him, Aaron would have passed away minutes after being born.  We were going to call in an ENT doctor to examine him further to see what could be done to possibly fix this, but there was another issue that made this issue seem insignificant.

His heart.

Oh, that precious heart of his.  I remember how excited I was when all of my ultrasounds showed that his heart was perfectly formed.  I thought because of this that we would have a lot more time with him.  But as it turns out, the exam done on his heart after he was born was more accurate and showed that he had what is called a coarctation of the aorta, or a stenosis (narrowing) in his aortic arch.  He was immediately put on a medication to keep his ductus open to allow blood flow to his body, because if the ductus closed (like it does soon after birth) then his aortic arch would take over and the existing stenosis would not allow the blood to flow through it.

The first cardiologist to give us this news told us that a surgery could fix the stenosis.  I was so happy about that, so relieved. That was on Wednesday evening.  Then the very next evening another doctor came to tell us that Aaron’s heart could not be fixed because “no surgeon will operate on the heart of a Trisomy 13 baby.”  Hearing this angered me big time.  Not only because this doctor’s delivery of this news was so callous and heartless (he was such a jerk ~ Rich later told me he wanted to punch the guy)  but also because I knew what he said was simply not true.  I had many friends in my trisomy 13 community whose children did have heart surgeries.  So what he was telling us was a flat out lie and was said only to persuade us to give up on Aaron.  Unfortunately much of the medical community believes that trisomy babies have no reason to be helped because their lives won’t be long, anyway.  I knew that we would have to battle for Aaron’s medical care at some point.

That night when I got back into my room, I immediately went online to my Trisomy 13 support group and told them what that doctor said to us.  Everyone was infuriated but yet not surprised, as they had to deal with this kind of discrimination, too.  I received email after email of warrior T13 parents informing me of the many doctors and surgeons who are “trisomy friendly” — the trouble was, everyone was from different states.  I needed a pediatric cardiology team  who was near us.  The next morning – Friday – I spent a lot of time on the phone trying to arrange second opinions from doctors outside of the hospital we were in.

In the end, we had four different cardiologists examine Aaron’s heart. The last one to examine him came on Saturday evening.  She was a pediatric cardiologist from the same practice that my friends’ T13 children saw, and she works closely with the surgeon who does operations on T13 children, so I really trusted her opinion and had my hopes set on what she would say.  But after viewing Aaron’s echo exam she gave us the same opinion that the rest of them did.  It appeared that Aaron’s stenosis was not just at one part in the arch, which a snip and reconnect could fix, but his heart had more than one stenosis, and they were at different areas throughout his entire arch. His aortic arch simply did not develop correctly, and to fix something like that would require a complete reconstruction of the aortic arch.  An operation of that kind would be very complicated and risky on an adult, so to attempt it on a newborn was not recommended and something that Rich and I wouldn’t subject Aaron to, anyway.  Once we learned this, we knew that further examination of his airway was pointless. Aaron’s heart could not be fixed, and without a working aortic arch he could not live. That news just completely crushed me. I really had hopes that we could eventually take him home with us and have more time with him.

We got that final news on his heart on Saturday evening, and that’s when we knew we would have to take Aaron off the ventilator and let him go. I didn’t want him on the ventilator any longer than he had to be, and so I was ready to take him off of it the next day, Sunday.  Rich, however, was not ready.  For someone who did not want Aaron on a ventilator at all, this surprised me. I think the reality of losing Aaron really hit Rich at that time, and he just wasn’t ready to say good-bye.  He wanted another day with him.

And so he got it.  And for the first time, it was Rich who held Aaron skin to skin.

Looking back now, I am so glad that Rich took this time with Aaron.  Up until then, he would sit near me as I held him, and would take pictures, and would visit him often in the NICU.  But he had never held him.

Aaron was so peaceful and content when he was being held by us.  I remember the nurses always told me that he needed less oxygen whenever he was lying on my chest, that the skin to skin calms him and also being so close to my heartbeat.  I wish I could have held him longer.  I guess no amount of time would have ever been enough.

To hold Aaron and spend time with him made us so happy and so sad at the same time.  Just a mixture of emotions.   Joy and sorrow.  Is there a word for feeling both joy and sorrow at the same time?  There should be a word for that.