Adventures in the NICU

The rest of the days in the NICU are a mostly one big blur with a few very notable moments in between. I can't even begin to recall all of the drugs Alexa was on at the time. She has several thick binders filled with her medical history. The nurses in the NICU must understandably document e v e r y t h i n g. I guess the thing I remember the most about the NICU is all the machines, the screens, the beeping and alarms. They are not too loud but still enough to forever permeate your brain. Not really, the thing I remember the most are the people. The other baby's, the other parents and families, the nurses, and neonatologist's. It is a time in your life when you are very aware of your surroundings, very in tune with your senses and feelings as everything can be a clue or link to your child's condition. Like learning to read the body language of those attending your child for example.

In the NICU, I learned very quickly what each machine did, I learned about blood gases, oxygen saturation, metabolic rates, pain meds, c-pap, respiratory therapy, catheterizations, fluoroscopy, the patend ductus arteriousis, prostaglandin, broviac lines, picc lines, pressure gradients and the list goes on and on. I was a person and a mom that was/is very into natural remedies so this was a whole new world for me. I both hated and was grateful for it. During it all, I was pumping and exhausted but determined to get some breast milk saved up for my little one.

Shorty after birth, Alexa was put on Prostaglandins to help her Patent Ductus Arteriosus (PDA) remain open after birth. The PDA is a blood vessel that connects the pulmonary artery to the aorta. In utero, the PDA basically shunts the blood away from the lungs as it does not need to pass there to become oxygenated as this job is fulfilled by the placenta. In baby's like Alexa with Transposition of the Great Arteries (TGA) they are receiving no oxygenated blood to their bodies so the PDA staying open is critical and buys them much needed time. The only other way she was getting some O2 to her body is through the mixing of unoxygenated blood with oxygenated blood that was occurring in her Ventricular Septal Defect (VSD) or whole between her lower ventricles, so in this case having a hole is/was a good thing. The Prostaglandin however, makes babies feverish, feel like they have the flu, gives them red skin rash or patches at times, and the worse gives them breathing apnea, periods of time during which the baby will "forget" to breathe, which in turn requires a breathing tube to help them.

There was a moment of panic that set in, after Alexa's oxygen saturation levels kept falling, even with all the help from the machines and drugs. At that time it was determined rather hastily that Alexa would need an Atrial Balloon Septostomy via a heart catheterization. A catheter is a special thin tube passed into the blood vessels through a small needle-stick in the groin or forearm, and guided into the heart. Through this catheter, a special device that resembles a balloon is passed into the heart. The wall between the right and left atrium is punctured and the catheter device pushed through the small hole thus created. The balloon is then inflated, and the catheter is pulled back through the small hole, tearing it and making it larger. The aim is to create a large enough opening between the two atria, so that blood can freely mix across it, and improve oxygen supply. This procedure allowed Alexa to now have a hole in her Atrium called an ASD on the top chambers of her heart as well as the VSD she was born with. In some babies this is enough to sustain them for a while before a big surgery is needed. Unfortunately, it was not the case for my baby girl. More to come about that later.

This is suppose to be a relatively uncomplicated procedure but for Alexa, it was not. The docs had a very very difficult time inserting the cath into her groin. They ended up puncturing her vein and developed a Deep venous thrombosis (DVT). This basically means she developed a blood clot in her leg. The clot can block blood flow. If the clot breaks off and moves through the bloodstream, it can get stuck in the brain, lungs, heart, or other area, leading to severe damage. So now not only did we have the heart problem we had this to worry about as well. After trying several times to insert the cath, they gave up and took her back to try to insert the cath with the help of a fluoroscopy team. Fluoroscopy basically meaning the use of X-rays to see motion, as opposed to still X-ray films. They were not able to insert the cath through the groin and instead the dosc said they had to insert the line through a vein in her neck, fish it down to her leg, and then pull it up and into her heart. This was the most stressful day thus far. When we saw the the doctor that performed the cath, come back from the OR we literally ran to embrace him as we saw the smile on his face. We were so happy that was finally over.

We again just had to hurry up and wait. We had to wait to see, how/if this would help her enough to prevent surgery and we could go home ... for a while. Plus her surgeon was also out of town, so the NICU became our home away from home.

NICU Day One

I couldn't wait to get to the hospital the next day to see my little girl! I had to get a day pass from my hospital to go see her. I never wanted anything more in my life than that. I waited and waited for my husband to come pick me up to take me over. In the mean time, I got ready and pondered about my swollen belly, how it wasn't squishy like after my other two births. Instead my belly looked like a mini'er version of my previous self, still hard and round just a bit smaller. As I continued to wait, I decided to venture outside my hospital room, I had many well wishers about my 'impending birth' I did not correct them just smiled and nodded about my soon to be due date. I went to the gift store to inquire about a breast pump and I cried again while I sat on a bench. Their were also some ladies inside selling knock off Coach and Dooney & Bourke Bags, it distracted me for about two seconds, then I remembered I would hopefully soon be caring a diaper bag for while, so these others were not needed. I went back upstairs and was proud I had managed to handle the maze at the hospital back to my room. I then waited some more. To my husbands defense he had a lot of things to get settled back home before he came to pick me up, especially like our other two kiddies, so although the waiting seemed long I understood. So finally my prince charming walked through the door and off we went.

Oh and funny side note story I just recalled: The night after my baby's birth, I had terrible back pain. I could not sleep comfortable in my hospital bed, and of course the night just seemed to d r a g terribly! So in the middle of night I decided to hop out of my bed and move to the convertible sleeper chair bed or whatever it's called. Yes, I was desperate! I made myself a cozy spot and felt a little better. In the morning, with the room still a little dark, about 6 a.m. the OB came to check me but couldn't find me. She came over to ask me where the patient had gone and I had to admit I was it. Of course I felt like a dork after wards but I think she did too a little bit. Hee. hee.

Okay, so again, off prince charming and I went to the NICU for the first time since our tour back when I was pregnant. It was a place I never imagined I would be visiting, ever, much less for my own child. I washed my hands really meticulously like required before entering and I rushed to my little girls side, well maybe not rushed because I was still pretty achy and sore at the time. I stood there for a long time, staring at her, talking to her, feeling her warm soft skin with my hand. My heart ached to see her all wired up and I pretty much did that all day until my feet swelled ... (some more).


But I didn't leave that day until I got to hold her for just a few minutes and my heart rejoiced!!!

For Kayleigh

Hug your family a little tighter. Kiss them a little longer. Give thanks. Be grateful for what you have and what you don't. In honor of Kayleigh, a beautiful, tough, courageous and very loved little girl. To the Freemans, I am very sorry for your loss. There are no words ...

Let it Flow

On the day of my daughters birth, I could say truly the flood gates of the heavens were opened and down my tears came like buckets full of rain. I cried of course tears of joy but shortly after and for days to follow tears of sorrow. My baby lasted in the same room with me a few short minutes. They weighed her, checked her, touched her, looked at her and then of course we all knew they had to take her away. I had already asked my husband to follow her, and not let her out of his sight. One of my sisters followed him. She was taken to the NICU, her oxygen saturation low. I really wanted to be with her. Like right away. Like right now and forever!! I wanted to hold her, to kiss her, to admire her for a looong looong time. I wanted to snuggle with her, and smell her, and talk to her, and hug her but most of all I wanted to protect her and ... I couldn't. I wanted to trade places with her. I wanted to endure everything she was experiencing and was about to face. I wanted her pain and her fear. I wanted it. I wanted to take it all away. But it couldn't be.

After resting for a bit I insisted I wanted to go see her. Somebody wheeled me over there, I think a nurse as she explained how to get to the NICU. And for the first time, I saw my baby hooked up to many machines. The worse, was that I had to see her get intubated. A breathing tube shoved down her tiny throat. It was the worse. They held down her little head, as she fought the pressure of the nurses hands. And she gagged. And then she was silent. Silent for a very very long time. I longed to hear her voice, to hear her beautiful little newborn cry. I had only the chance to briefly here it right after she was born. Don't ever take that for granted listening to your child cry, it is believe it or not a beautiful thing. I listened attentively as the nurses explained the screens and machines. I looked helplessly at my beautiful little daughter now clinging for life. Welcome to this beautifully wonderful cruel world my little one. Mommy's here.

An on call Pediatric Cardiologist was examining an echochardiogram they did on her and determined she should be transported to the Children's Hospital main campus that same day. He said she would be better cared for as more things were available at the main campus should the need arise for further interventions. So now not only was my baby girl not in my arms and not in my room, now she would also not be in the same hospital as I. I can't say any of this took me by surprise, as it did not. But it was one thing to hear that it was going to happen and another to live it. I saw my little baby get all ready in her crystal clear NICU box to be "air vaced" (but really driven since it was a few blocks away) to the Children's Hospital. I stayed in that room, that empty room that moments earlier had been filled with frenzy and I cried. After a while, I called my poor family who had been waiting back in my room to come and get me but actually a nurse wheeled me back to my room. I felt defeated, deflated, conquered and crushed. I felt the biggest empty pain in my heart I had ever felt in my life. I was wheeled into my room where my brother, sister, sister in law, father and other brother in laws had been waiting. I couldn't look at them. My husband was with my daughter. My mom, with my other children and my other sister. The nurse helped me get back settled in my bed and asked if she could get me anything. And of course she could get me nothing that I truly wanted. After she left, I could feel my family looking at me and then at each other. I could not look at them. I could not look anywhere but down. I'm sure they felt lost for words. I however, in that moment just lost it. I couldn't hold it in anymore. I cried like a baby, like a little girl. No, I cried like a loving emotional mother who had just given birth to the most precious baby girl born with a congenital heart defect and had just had her baby taken away. I still remember my father, coming to embrace me, holding me tight as I felt the tears roll down his face and tell me everything would be all right. I couldn't help but feel like a frightened little girl. Thank you father for your strength during my moment of need. My room was filled with the fragrance of fresh flowers and decorated with balloons and cards of congratulations and well wishes from family and friends. That night I stood at my window and from my room I could see the top of the tower of the Children's Hospital my daughter had been taken to. My heart was there, but I was not.