Critical

Posted on March 26, 2011 by petezappy1

I’m sitting in the NICU as I write this post. Mary is in the chair next to me taking a long overdue nap under my hoodie. It’s been an extreme lack of sleep all week for both of us, especially the past two days. It’s my first night back here since Monday evening. My work schedule didn’t really allow me the time to get into the NICU. The feeling of emptiness in my heart lingered with me all week, but I was grateful to be working, and at ease with crew I was with.

Tuesday morning started off as a tough one. Our little buddy Jake, my cat of eleven years was not doing well the previous two days and it was noticeable. He had been struggling with heart and liver disease for almost two years, but never really experienced any extreme pain. My parents took him to the vet, while Mary was at the NICU, and I was working. The news was short and sad. Jake never made it back home. He was in pain and had to be put down. We knew this was coming eventually, but it was more sudden than we hoped for, and it hurt like hell, especially since we we weren’t with him in his final moments on earth. I saw him for a couple of hours on Monday evening before my visit at the hospital and gave him some of my pork chops, one of his favorite dishes, and he fell asleep purring in bed with Mary later that night. I haven’t been home yet, but I can feel the void, knowing he is no longer with us. I’m actually going to miss him trying to eat our dinner every night.

Meanwhile, Remy was not having the greatest day Tuesday. Things remained a puzzle. Mary arrived early to be there for her biopsy, but it was postponed until Wednesday. Remy was still struggling to get anything out and still unable to take any feeds. Mary kangarooed with Remy and felt her experiencing heavy twitching once again. The next day Remy had her biopsy, which went without a hitch. We are awaiting the results. Later that day she would be put back on EEG for the second time. Unfortunately, it confirmed she was experiencing seizures. Fortunately, they were not nearly as frequent this time.

With respect to so many details during the past three days, which I could write several posts about, I am skipping over them to get up to speed Remy’s current condition. As of this morning Remy is in critical condition. She has an infection, and is very sick. She is intubated and being administered nitric oxide. The intubator is giving her constant puffs of air through her lungs, 420 per minute to be exact. The EEG is running and another machine is keeping oxygen in her lungs while releasing carbon dioxide from her lungs, at a rapid rate. Her heart rate is extremely high, steadily between 200 -220 per minute. Her blood pressure is extremely low (her maps are about 14 and we need them to reach at least 32, 33 before we can let out a sigh of relief). One of the biggest goals, right now is to get her blood pressure up. Just to paint a small piece of the picture, when I was last here on Monday night, there were nine open outlets behind her incubator. Not one is open at the moment.

Remy is on just about every and any antibiotic that she can possibly be on. I do mean that literally. She is getting blood drawn in order test her blood gases every two hours. She has I.V.’s in all but one limb. She has an A-line in her left arm, which just a few hours ago was in her right arm, and several drip lines entering the I.V.s in her feet. She is being administered fluids such as Dopemine, Epinephrine, Phenobarb, Keppra, caffeine, sugar, fats, electrolytes and more. She has leeds covering her head, two tubes down her throat. One is breathing for her, and the other suctioning out bile. She has a catheter, an oxygen monitor on her foot, four monitors on her chest and a pad covering her eyes from the light.

It is medical technology at its best and Mommy and Daddy’s worst nightmare all at once. It’s an experience that Remy is clearly uncomfortable going through. She looks as if she is in a coma, for the most part. She is not, thankfully! The small occasional grunts, slight hand grips and toes curls on our finger show signs of strength. Her white blood cell count is down and she is slightly nuetropenic. Over the last few hours she is showing signs of improvement. The NICU nurses and doctors are working very hard. I cannot express enough how grateful we are for them! Lillian, a frequent nurse of Remy’s, has been with her for four nights straight and has been taking such good care of Remy, and us for that matter. She is our superhero this week!

This is a tough day! The toughest day we have faced yet. While willingly and gratefully going back to work, getting back here to be with my girls could not have come soon enough. I did not expect it would be in this state. We are with Remy and by her side. We talk to her softly and tell her to keep fighting hard and keep getting pissed off when a needle pricks her. We are scared, and upset for the pain out baby is experiencing. Who knows how much we’ll sleep tonight but who cares. We just hope she continues to improve through the evening. This is not an easy experience by any means, but we know our baby will fight!

Rather than show pictures of what she looks like now, I wanted to post a cute video of her, please check out this video from last week of sticking her tongue out and making us laugh.

The Good, The Bad, and Did She Poop Yet?

Posted on March 17, 2011 by petezappy1

It’s Monday morning. It was a different one for Mary and I. I was flat out exhausted and overwhelmed with things piling up. I stayed at home to work for a bit, while Mary went to her OBGYN for a check up. She was so busy last week that she forgot she has been through a lot too, and should probably make sure she’s doing all right. She is. She got to the hospital in the afternoon to get a ton of news from the doctors. Remy had had some trouble breathing in the morning. She was taken off nasal cannula and put back on SIPAP early that morning. This happens with preemies, but we haven’t gotten used to it yet. Sometimes they just forget to breathe, and you have to startle them, and in this case give them more assistance to remind them to breathe.

The residents also told Mary that Remy had a temperature, and may have possible fungal infection. Her temperature was up to 100.3. Normally when she has a temperature, it is below 98.7, which is more typical of preemies. This is a pretty big concern as our residing physician later told us. When a preemie’s temperature rises and it is not treated right away it could result in death. On the flip side, NICU personnel are so on top of these things and catch them right away and it is very rare I assume in any NICU for that matter that a temperature is not recognized and treated for immediately. Another round of blood work, and a second spinal tap was necessary. In the meantime, she was immediately put on an on antibiotic called Abelcet, which should eliminate any fungal infection should there be one. Mary called to download me and I couldn’t stay home any longer, I headed to the hospital. The doctors were finishing the spinal tap as I arrived, so I waited with Mary in the family room, then spent the rest of the afternoon with Remy. Mary was still able to Kangaroo. I sat with them, hoping for the best for Remy as always.

Tuesday morning we arrived at the hospital to find that Remy’s temperature was down and she was doing great, besides the fact that she still can’t poop without a suppository. Preemies aren’t supposed to know how to go on their own, they don’t have ab muscles or know how to push. But for some reason Remy isn’t able to go at all, which could mean a blockage in her colon or intestines. She was taken off of the feeds and a procedure was scheduled for Wednesday morning. The rest of the day was pretty relaxed, as relaxed as you can expect the NICU to be. I was able to Kangaroo with Remy for a few hours, while Mary pumped as usual. We watched her relax in her incubator and headed home for the night hoping for good results tomorrow. We went home thinking positive!

On Wednesday, Remy had a tough morning, and so did Mom and Dad. When we got in, we expected her to be whisked away at any moment for a barium enema. We had no idea that we would be able to come along for the procedure, which of course we did. As I mentioned, she had been having problems in the restroom area and the attending doctor wanted to check and make sure there were no blockages in her colon. Poor thing is 21 days old and already has to have an enema. It was a pretty hardcore morning for my little girl. To watch the process, well lets just say wanting to switch places with her was at a maximum. Most of the time in the NICU the babies are kept in or near their incubators, and they are only moved if they have to be. Doctors will even do surgeries right there in the NICU. Moving the babies is very traumatic for them, especially if they are getting breathing assistance, as Remy is.

The doctors had to change her from CPAP to SIPAP while manually pumping her in between in order to get her down to the radiation floor for the test. Remy did not like this at all! It took some time to even get the correct size to fit her face, as she is still just a little nugget. Later in the radiation room, we came to find out that she was also pretty clogged up in her nostrils. That made it harder for her for her to breathe. She was a tough little one and made it through, but not without a fight. She was throwing punches the entire time, with fists clenched. I kid you not! It turned out, she was all clear of any major blockages and the doctors didn’t find anything alarming. Sigh of relief! Later in the day she proved how good she was doing by pooping on her own, and it was a good one. I mean projectile! I never though I would say this, but Mary and I have never been so proud. If that was too graphic, well….. I’m sorry, but this is really good stuff for Remy! Ultimately despite our morning it was a great day. While at the NICU, I admittedly spent most of my day working, even holding a business meeting in the lobby while Mary kangarooed. Nothing makes me feel better than to round the corner and see my sweethearts together. Mary got to Kangaroo with Remy for almost 3 hours, and I don’t think the smile ever left her face.

We are hoping she can tolerate the feeds that she will resume today (Thursday), gain some weight and be able to digest the .05 cc’s of formula she gets each hour and go to the bathroom on her own. In fact, she may be taking another stab at her Mom’s milk today! Even though Remy went to the bathroom numerous times yesterday and throughout the day today, she gained 30 grams and weighs a whopping 1210 grams, which is 2.6 lbs. HUGE! Mary says she will change diapers proudly all day. Not to be stereotypical to all of my women readers, but I’d be lying if I didn’t say, “I am perfectly okay with that.” Don’t worry; I’ll be getting in my fair share as well. I’m not afraid to get my hands dirty, pun intended. We’re still waiting on results regarding a possible fungal infection, but so far all available results from blood urine and spinal tap have been negative. We will know more tomorrow and hope for more negative results. It’s only Thursday and it’s been a rollercoaster of a week, but we’re smiling today, and that’s wonderful.

I want to thank Donna and Allison for creating “Help for Remy” on Facebook, we feel so loved and words will never describe how grateful we are to everyone who is supporting us through this time. It is so nice to know that through the years we are all still connected, regardless of how long it has been, and we are truly grateful for all of your friendships. All of you and all of your words give us so much hope and help keep us positive. We had a great day at the NYU Blood bank too. Props to Dave Simone who brought almost his whole office to donate blood for Remy and to Kelly and Marty and all of those who are making their way over to donate too. Remy thanks you!

Here are some pics from this week, She’s getting bigger everyday. The nurses tell us that first she gets cheeks on her face, then her butt cheeks fill in and then come thighs! Our close friend Brenda gave Mary a tiny giraffe while she was in the hospital, and we gave it to Remy and are going to take pics with it all the time, so show how much she is growing. Enjoy!

<a href="https://ourlittleremy.org/wp-content/uploads/2011/03

Weekend Stretch

Posted on March 14, 2011 by petezappy1

It’s Monday morning. My mother left this morning to spend today with my brother Johnny. She spent the day with Mary and I yesterday, took us out to dinner, and then spent the night. As always, it was great having her around all day at the NICU. She’s been a tremendous help, and she has a constant gleam in her eyes, now that she’s a grandma. Since my last post Remy is doing much better. We all went to bed happy last night and actually slept in kind of late this morning.

Friday morning we arrived to the NICU around 10am. Doctor Wachtel informed us that Remy did indeed have another seizure. They decided to up her dosage of Phenobarbital. Mary’s face was flush, and filled with fear and concern. She kept telling me how much her heart hurt. So did mine. It was stressful, but I knew the doctors were doing the best they could. My way of trying to rationalize this to myself, and calm Mary, was that we would be crazy to think after experiencing frequent seizures that they would just stop cold turkey. After all, that was the truth.

Still, this was the hardest day yet for my love, Mary. Just over two weeks ago she had to go through an emergency delivery, after being told she could die. She went through extreme trauma with a multitude of emotions, whacked hormones, extreme pain, and now her baby who should still be growing inside of her, knows life only through multiple machines. Additionally, Remy has been through a lot of stress. There is definitely an emotional attachment and a void that Mary wishes she could provide.

That said, Mary was not in good shape. I was extremely worried about her. I had not seen her this upset, and just did the best I could to be there for her. The good news was that Remy did not have any seizures throughout the remainder of that day. You could tell that she was uncomfortable. She looked exhausted, she was still twitching, and she was unable to kangaroo. Remy needed her rest and at that point anything we did would have disturbed her. We decided it was best to leave a few hours earlier than usual.

When we got home at 7:00pm, Mary was out like a light. She still got up to pump every 3 hours, but she pretty much did it while sleeping. She needed that rest, and Saturday morning she was feeling a bit more refreshed. Remy had not experienced any seizures through Saturday. She was improving rapidly in all aspects, and looking better all around. Suddenly, she had cute little cheeks.

I was juggling work and visiting Remy. Mary got to kangaroo her and was all smiles. Like I have said before, I’m so proud of how Mary has handled everything. She feels everything her daughter is going through, and as I do, she wants to take all of this away from Remy and absorb it herself. Mary’s actions everyday are a true testament to what a great mother she is.

Upon arrival yesterday we noticed that the EEG monitor had been taken off! Yes! Remy had gone over 48 hours without any seizures. Still, I felt a void for not being next to her when everything came off. I wasn’t there to hold her hand and talk to her, in case she squirmed or cried while they removed the leeds that were glued onto her head. Regardless, we were both ecstatic to see these gone. On the other hand, we still worry that she could have additional seizures that will go unnoticed without it. Remy’s situation comes with many double-edged swords. “Trust the doctors, trust the doctors, but always question,” is what I always think to myself. I want to believe they know what is in the best interest (and they do…), but I want to know everything (as I should.)

Mary and I fall more in love everyday with Remy and with each other. This experience is testing us, but for the better. We continue to get support from so many of you in so many different ways. We still tear up every time we read your comments, posts, emails, letters, and texts (Jeez Alejandro!). We are immensely grateful for every drop of support. Mary, Remy, and I have our gloves laced up, ready to take on whatever comes next, but are hoping for a great week, so we don’t have to use them. Remy is tiny, but she is tough, and she keeps proving that. As always, we remain happy and glowing about our little girl, Remy. She is our biggest gift in Life! Being a dad is easily the coolest thing ever, despite all the tough times we have had.

Check out the funny pic of Remy kangarooing and taking a nap with Dad. Like father like daughter!

Taking it in Stride

Posted on March 11, 2011 by petezappy1

“It is 1:17 am, Friday morning. I’m so tired and need sleep, but I have great news to share! That said, this post will be a short one.”

The above is what I wrote a little more than 2 hours ago when I was about explode with excitement about how great Remy has been doing. I know that so many of you are following, and I wanted to share the great news right away. As I finished the post, and was about to hit publish, I thought let me just check in and call the NICU, just to make sure she is continuing to do well. Unfortunately, the news was not great.

The below is what my post said.

Remy has had a great day. When we arrived this morning we were informed that the seizures were reportedly stopped over night. This remained status quo throughout the day, until we left at about 8:00 pm tonight. Her white blood cell count was much closer to normal. She was still twitching, but signficantly less. She received her second blood transfusion from me today. This was only because her doctor saw no reason to make her work extra hard and possibly contract another infection, or struggle any more than she has had to. She would have most likely needed a transfusion in a few days anyway. Her final results from the spinal tap came back today. No Meningitis was found. She gained weight. She is up to a whopping 2.4 lbs! She is on a regular diet of .5 cc’s of formula per hour. Hopefully she will be taking another stab at Mom’s milk again in a day or two. This is all great news and definitely reason to be happy!

She will remain on Phenobarbital. We have been told she will need to stay on it for weeks, months, or even years moving forward. That will be addressed more thoroughly as time goes on and we learn more about her health conditions and her seizures. Regardless, this was the best day we have had since Remy was born. We were literally on a high today, and bursting with joy! My last post was very concerning, and justifiably so, but I just wanted to get this post out as quickly as possible to so that Mary and I could share the great news with all of you amazing people who have been supporting us from close and afar, whether through texts, comments, emails, phone calls, letters, hope, prayer and so on.

I wish that I was not continuing to write more. I’m not tired anymore. I’m wide awake and just want to be with Remy. Just a few minutes ago I woke Mary up to give her an update. After speaking to our on call nurse and doctor at the NICU. I was informed Remy had experienced heavy twitching for several minute straight, which showed significant spikes on her EEG. It is most likely more seizures, and even if not, still reason for great concern.

Normally, I would not even think about sharing this news online until we knew more. In this unique situation though, I just decided continue and get it out anyway. My objective was to just share the great news with all of you after my last post. The lesson learned here; Take things in stride. Be happy and grateful for the steps forward, but keep a heavy guard up and keep grounded somewhere in the middle, knowing that we are nowhere near, “out of the woods” yet. I want to scream so loud, punch a wall, and break something. My emotions could very easily be translated into a post full of four letter words. That would not do any good though.

We know (especially from speaking with other parent’s experiences in the NICU) that we will most likely experience more ups and downs, still we are so happy and grateful for today! Our little Remy is doing so much better, and we hope that she will continue down this path. We will meet with the doctors in the morning during rounds and most likely be discussing some new/additional medication for Remy. We hope that she will get more rest through the evening. I won’t sleep much tonight, if at all, but I don’t care about that.

The hardest part for me is watching my two girls go through this pain. I can handle heartache, worry, and the toughest circumstances life throws at me. I will remain solid and strong. I just want my Remy to be okay. I want her to be pain-free and healthy! I want to be able to take the tears and pain from my Mary and Remy absorb them like some kind of superhero. I think about Jeff Bridges in the movie Starman all the time. He was an alien in the body of human, who with his touch took pain and death away from other beings and absorbed it himself even though it made him physically weaker. When my little 2-year-old cousin Ty (now 3, and always fighting – http://tylouis.blogspot.com) was diagnosed with cancer 9 months ago and I started to witness what he has to go through. I had delusional day dreams that I could be Jeff Bridges character. I’m not crazy, I know I can’t, but that dream would cross my mind everyday, and now that I stare at my daughter everyday, I think of it all the time!

All of it, I would take it all of it away from them in a heartbeat, and endure it myself. It just doesn’t work that way. Life doesn’t work that way! F–K life for not working that way, F–K it………………………………………………….! I will just continue to be the best husband and dad I know how to be. I will hope that our little girl gets better.

Its was a good day after all. My girl is still a fighter, she shows so much strength and energy at times, even under such stress. I am still grateful for everyday, for every time she opens her eyes and looks at me. Let’s hope her sunshine glows through those rain clouds tomorrow!

Smooth Landing

Posted on February 26, 2011 by petezappy1

Behind the scenes, while my priority was to get to the airport, my crew did everything to make that happen within minutes, hassle free, even checking me in before I arrived. My arrival in New York was the same experience. Our close friends, Marty and Steve, were waiting just outside the gate when I arrived. They had me from LGA to NYU Medical Center in 15 minutes flat! Upon arrival I walked into a crowd of 8 or so people. My sister and brother in law, and other close friends had been there through the whole ordeal. I dropped my bag and went to hold Mary as if I hadn’t seen her in ten years.

It was about midnight when I arrived and Mary was just coming to, Remy was not even 5 hours into the outside world. The nurses at Tisch were so attentive and immediately got me in touch with a doctor that was in the operating room with Mary. She asked if I wanted to come up and meet my daughter. I told her to give me some time with Mary, and that once I was sure she was okay I would be up. Still with every emotion racing through my head, I couldn’t wait to see Remy and didn’t want to leave Mary. What would she be like? How hard would it be to meet my child and see her completely dependent on machines to keep her alive? Was it safe for me to go there? I didn’t want to get her sick! Don’t get me wrong, all I wanted to do was see her, hold, and look at her.

Mary was moved to ICU and I wanted to make sure she got settled in before leaving her. She was pretty out of it, going from general anesthesia straight to a morphine drip, so she would go from spurts of comedic inebriated moments to tearful moments of concern for our child, into screeches of pain. Once she got settled in she was still pretty out of it from the drugs, so I went downstairs to meet Remy.

As a skier, who loves to challenge myself to my limits and feed off of an intense adrenaline rush, I can say that I was filled with adrenaline like never before. The elevator could not have been any slower and I could feel my heart beating so fast. It was an intense rush. I walked into the NICU (Neonatal Intensive Care Unit) and heard some babies crying and in each section there were 4 incubator cubes. Our Remy was in the last section. I walked up proud, smiling standing tall, with a constant stream of tears running down my face that could have filled a bucket. “Hello….. (followed by absolute silence). Hello Sweetheart!” There she was. All 2 lbs.! She was covered in gauze around her head. She had a ventilator down into her throat, and I.V. attached to her arm, tubes going into her belly, and band aids around her feet. Her skin was as red as a chili pepper, literally.

This time, I won’t try to describe what I felt, except that I felt more than I can ever remember feeling, period! The nurses explained to me what all of these tubes did, her condition, her color etc. It may as well have been Charlie Brown’s teacher talking, because all I could focus on was looking at Remy until I heard the words “would you like to touch her?” This is when I really knew I was a Father.

The Phone Call

Posted on February 25, 2011 by petezappy1

You never expect something to suddenly happen that will change your life. On Wednesday February, 23rd, while working with a television crew shooting a new reality show, about 500 miles from home, I was told by my EP to call Mary immediately. After reaching her, I heard my frightened wife, frantically crying waterfalls, while explaining that the baby needed to be removed immediately to avoid severe health complications or death. A doctor then reaffirmed and explained to me the diagnosis and situation, which I only partially absorbed.

What the hell is Health Syndrome, I kept thinking (it was really HELLP Syndrome http://www.americanpregnancy.org/pregnancycomplications/hellpsyndrome.html)?!? Would this be the last time I ever spoke to my wife? What about our daughter? Why is this happening? I don’t even know why or how it happened, but next thing I knew I was at the airport. All I could do was call close friends and family and tell them to rush to the hospital. Fortunately, some close friends and my sister had made it there already, but I was not with her while she was very sick and in her most frightening moment in life!

This was an actual nightmare. Picture yourself caught in an undertow with your loved one and unborn child screaming for you in a sinking ship. You can see them in the distance, but you just keep getting pulled into a current. Now play it in slow motion. That’s what it felt like. I imagine it would feel the same way if I were with them, because in realty, their fate was in the hands of the doctors. It was so difficult for me not being by Mary’s side.

While sitting on an airplane, our friend Sarah called to congratulate me on being the father of a baby girl. She was a tiny 900 grams (2 pounds) and being kept alive through a ventilator and in incubation. Mary was still in surgery and being sewn back together. Wow! I mean, what can I say? I felt proud, scared, cheated, excited, relieved, anxious, angry, and extremely overjoyed all at once. I smiled and cried from one minute to the next. These extremely talented doctors and nurses made what could have been a morbid experience feel like a routine procedure. Thank God for technology and great doctors!

All of the sudden, I’m a dad! My daughter was in the world, extremely underdeveloped, but stable. All I could think was, “get me the F–K out of Cleveland and to New York.” As Murphy’s Law goes, the plane was broken and everyone had to get off! Thankfully I was able to board the next flight.

Our Little Remy

Tag Archives: preemie dads