Update - November 4

So guess what I am doing here? This will be a family classic!

Hey...try to keep up with me!

My new trick...I have feet.

Covergirl in training.

I was out of town when this was taken. In my opinion, child abuse! :-)

Well, a bad day for a capitalist! But a great day for a dad, who got to babysit tonight.

Erin is doing unbelievably well. She started eating rice cereal today, and consumed an entire bowl. She is eating well, playing well, trying to turn over and sit up, and taking steps when someone balances her. Her health issues are status quo for now. It is easy to forget when looking at her that life is tenuous for her. And when you remember the issues, it is hard. But for now, she is doing amazingly well.

October 19, 2008

Erin is doing great. We took her on her first plane trip last weekend to visit Alex and Sara in Washington DC, and she did wonderfully. The plane ride both ways was uneventful, other than some minor fussing as we were landing.

Just wanted to provide some updated pics.

Update - September 27

Tomorrow, Erin will be 3 months old. She continues to amaze everyone with how well she is doing. At the Pediatrician yesterday, she weighed 11.6 lbs, and the doctor was pleased with everything about the way she looks and acts. She is off the pulse ox machine, meaning that the last of her leads and devices are gone. She is 100% natural!

She is sleeping so well that sometimes she doesn't wake for her feeding midway through the night. Her naps during the day range from 1 hour to 3 hours. Her main activities besides sleeping, pooping, peeing, and spitting up on me (she seems to view this as an art form and she is quite accomplished at it!) are smiling, laughing, and trying to talk. She is a joy in every single way.

Update - Thursday September 11

It's 3:30 am and as usual, I am having difficulty sleeping in this hotel (I am in LA). There have been some recent developments with Erin that merit recording.

Over the previous week, we had noticed increased difficulty in getting Erin to eat. She ultimately would, but often would cry after taking the bottle for a moment or two, and getting her to resume required great patience and time.

On Friday, she threw up in a big way, and repeated it on Saturday. Sunday, after she skipped a morning feeding and only took half of what she would normally eat the other two feedings, we called the pediatrician, who immediately advised us to get her to the ER at Children's. There are two worries when she doesn't eat. The first is dehydration, which can be devastating to any baby, but even more so to Erin because of her condition. The second issue is that she needs to eat quite a lot to grow and gain strength. Her heart has to work so much harder than a normal heart that it results in her burning more calories than a normal baby would, thus requiring her to eat more.

The ER was typical. Hurry up and wait. In our room, they had Toy Story playing on the TV. The movie played in its entirety twice, along with half of another movie before we were finished. They examined Erin, took x-rays of her mid-section to examine her heart, stomach, and intestines, and checked her from head to toe. While we were there, she began to exhibit some very frightening behavior, where she would suddenly open her eyes wide as in terror, fling out her arms and legs, and act very scared. It would pass quickly, but it happened a number of times that we could observe. It could just be the typical baby habit of starting over almost anything, or it could be a sign that she is having neurological issues related to the stroke.

Ultimately, they decided that she needed to be admitted so that she could be put on fluids, and to monitor her eating. This required the insertion of an IV, which was painful and traumatic to watch her go through. She was admitted to the fifth floor as opposed to the NICU. The good thing is that we shared a room with only one other baby, and there was a TV. In addition, one of us could spend the night. The downside was that the other baby cried the entire night, poor thing.

I spent the night with Erin, and she started eating better almost immediately. One possible diagnosis for her eating disorder was thrush (sp?), which is a white coating of the tongue. If it extends down into the esophygus, it can be very painful for the baby. The treatment is to swab a drug who's name I can't remember right now around her mouth a few times a day. Unfortunately, the combination of that drug, along with her other medications and a whole lot of milk caused her to throw up everything in her. She was sitting in my lap at the time, which meant I was soaked from top to bottom. It only took the hospital 3 hours to bring me a set of scrubs to change into, as my clothes were a disaster.

Erin slept all night, until I finally woke her at 4, upon which she ate like a champ and went right back to sleep. She woke at 6:30 and ate again, and then ate again at 8:30. We were finally released at 1 pm, just in time for our appointment at the hemotology clinic. We had made this appointment weeks before, after being informed that Erin had tested positive for a gene mutation that greatly increases the risk of her forming blood clots. There is a family history of blood clots, and they are a serious threat to her in that it could cause another stroke.

Upon arriving at the hematology clinic, we were met by one of the cardiologist who had the unpleasant task of informing us that the x-ray from the day before showed that Erin has a potential bowel obstruction, and that we needed to return to the ER as soon as our appointment was over. Perfect.

After examining her, we spent time discussing her situation with the attending. Basically, it's more of the same. Is she at risk for developing clots - yes. Can they do something about it - maybe. Do they know what to do - no. What's the course of action - wait and see. Maddening. We did learn that the ASD hole in her heart can allow a clot to reach her brain and cause a stroke, and perhaps this is how her first stroke occured.

We returned to the ER, went through the entire admitting process (again), and waited for the doctor after Erin was once again examined. The doctor came in to tell us that the hospital had miscommunicated their message to us. They had said that if she wasn't eating, and she wasn't stooling, then have her come in. If she was doing all of those things, then what they saw on the x-ray was a shadow and not a blockage, and send us home. Too bad they didn't communicate that correctly, as it was stressful and wasted an additional two hours.

Allow me one small rant. As much as we love Children's and the people there, and this time was no different, their policies and procedures are enough to drive you stark raving mad. When we arrived at the ER, I had to show our insurance card, which I do for each and every single visit. I had to fill out the same forms I do each time. Erin then had to be weighed, had her temp taken, and had her blood pressure taken, each of which she hates and finds very invasive. Every single person who came in to see her had to listen to her with their stethoscope, again something she dislikes. When she was being sent to the fifth floor, they even listened to her just as she was leaving. For what? When we arrived at the fifth floor, she had to be weighed, temp taken, blood pressure taken. Why...was the ER incompetent, or wouldn't they release the results? Every single person who approached her listened to her. The next day, after thoroughly examining her (you guessed it...including weight, blood pressure, and temp), she was released and we proceeded to Hematology. Upon arriving at the clinic we had to present our insurance card, sign the same forms, and then...yes...weight, blood pressure, temp. And lots of stethoscopes. When we returned to the ER (remember...we had left less than 24 hours ago), it was the same. Insurance card, forms, weight, temp, blood pressure, scopes. Even though she didn't need to be there. The doctor who came in to tell us this still listened to her before she left.

The scopes I can understand. They want to make sure she is doing ok. But tell me why they each need to take the same readings, upsetting her over and over? Can't they share the information? Can't Hematology trust the ward to get it right when they did it one hour previously? Or for that matter, can't the ward trust the ER who had done it shortly before admitting her? I guess the ER wouldn't trust Hematology because they were angry that the ward wouldn't trust ER. Ok, point made, rant over.

Since returning home, Erin has been doing better eating, and is very happy and well adjusted. I had a number of conference calls to take, and upon finishing, I walked into the family room to see how Erin was. Sheila had left her asleep in her swing while she went to pump. In the meantime, Erin had woken and was just playing by herself in the swing, looking entirely content and happy. When she looked over and saw me, her face lit up in a huge smile, and she immediately started her cooing and noise making. It was absolutely the best moment ever.

Other good moments come when she wakes up. After her elaborate stretching routine, she starts opening her eyes and then going back to sleep. If I lean down to kiss her, she will get a quick smile on her face without opening her eyes. When she finally does wake, her usual first reaction to you is a huge smile. We put her on the changing table to change her diaper and brush her hair. As soon as the brush touches her hair, she starts smiling and doesn't stop. She loves having her hair brushed. Funny how you spend your entire life chasing goals and dreams, and one day you discover that the ultimate happiness and satisfaction isn't found in any of those things. It is found in your child's simple smile.

The pictures taken above were taken by Sheila on her birthday, which was yesterday.

Update - one month at home

I have been asked by a number of you to update the blog to let people know how Erin is doing. In short, amazing. She has proven to be somewhat of a miracle by managing to avoid the initial surgery to put a shunt from her heart to her lungs to help get enough oxygenated blood. That surgery is now off the table. She will definitely need open heart surgery at some point to reconstruct and fix the damaged portions of her heart. The what and when of that surgery will be determined by her. It could be in six weeks, six months, or six years. We don't know how extensive the surgery will be.

What we do know is that she is doing remarkably well. Her unaided oxygen sats are in the mid 80's every night. She sleeps extremely well, waking up to eat at around 2 am and then again around 5:30. She has a fussy period between 7 - 9 pm, but even that is abating. She is an absolute joy.

She is beginning to interact on a consistent basis, smiling and laughing regularly. She makes a lot of noise, giving us the notion that she might be quite a talker someday. Her pediatrician observed her playing with me during her appointment last week and noted that her interactions where really quite advanced for an 8 week old baby. It seems surreal to write that she is only 8 (now 9) weeks...it seems like a lifetime ago when she was born.

In any event, her are some photo's to give you an idea of what she looks like today, without all the "equipment" on her.

Saturday, August 2

Erin's home for 2 of the 5 weeks.

Erin meets Nanny Priscilla for the first time. It was love at first sight.

More of Erin's home.


Nurse Hayley, one of Erin's favorite nurses.

Erin passing the car seat test, a requirement prior to discharge.

Nurse Melissa and Erin.

Hayley and another Nurse Melissa, who was Erin's night nurse her first week.

Nurses of the NICU!

More nurses of the NICU!

Nurse Helen, and Dr. Raye Ann deRegnier, Erin's neonatologist for the last week.

Sheila holding Erin for the first time with no wires or tubes!!! Ready to go.

Nurse Linda and Sheila holding Erin

Erin in her car seat, ready to leave. "Let's go Dad. I am so out of here!"

Erin at home sitting up in her boppy. Happy and loving life.


Well, Erin is home. It seemed that this day would never come. She was born 5 weeks ago today. It seems like it was in another lifetime. Life before her seems almost surreal. We have spent every single day for the past 5 weeks at her bedside, from morning to night. It can’t help but change you.

Leaving the hospital, walking in the door and taking Erin up to the room that Sheila has so lovingly created for her was perhaps my biggest thrill ever. And in a life overly blessed with great moments and wonderful thrills, that indeed is something very special. Erin is safely ensconced in her new home, free of wires and leads, no connection to any machine whatsoever. We have a pulse ox machine that we will use daily to measure her oxygen saturation levels, but that is precautionary. She looks great, sounds better, and is everything we dreamed she would be.

She is doing well at home. She seems healthier and happier. Yesterday, we both had her laughing while playing with her. A smile from her seems to be God’s greatest gift right now. She is even sleeping well, waking up only once both nights, eating and going right back to sleep until 7:30 am.

By all accounts, Erin is somewhat of a miracle baby. She has beaten the odds every step of the way. When she was initially diagnosed with Ebstein’s, we were told that we needed to very carefully consider our options, which included terminating the pregnancy. It was felt that her Ebstein’s was potentially so severe that there was a good chance she might not make it to birth, or perhaps die shortly thereafter. If she made it, she would undoubtedly need immediate surgery to insert a shunt. The shunt would be a prelude to two additional surgeries, surgeries that would leave her with what is known as a one-ventricle heart. That heart would preclude her from many of life’s normal activities, including potentially from having her own children.

Instead, she has beaten the odds by doing well enough on her own to leave the NICU after 5 weeks without any surgery. We don’t know what the future holds. Additional surgeries are a strong possibility. Perhaps they will be relatively minor, such as a catheterization to close the hole in the top of her heart. Or perhaps she will ultimately need to have her valve replaced and have a major reconstruction of her heart. Or best of all, perhaps she will continue her miracle performance and continue to improve to where no intervention is needed. Hopefully, there will be no residual effects from her stroke. Only time will tell.

I started this blog initially as a way of communicating with close friends, family, and business associates in an effort to keep those concerned apprised of Erin’s condition and progress. Spending 12 – 14 hours per day in the ICU, I didn’t want to be faced with having to make a dozen calls on my way home to repeat the same story each time. Somehow, it has morphed into something far beyond a simple communication vehicle. It quickly became apparent to me that writing the blog was a cathartic release of stress. During the worst moments, sitting down with my laptop and forcing myself to try and construct cogent thoughts to put on paper helped to take my mind off the emotions I was feeling at that particular moment. Frankly, I tend to be a very private person, and never intended to share such personal and intimate thoughts. What changed all of that for me was the realization that writing the blog was far more than a personal outlet for the emotions and stress I was dealing with. Ultimately, it is a record of my daughter’s journey into this world, and perhaps that will be of value to her someday. I have tried to capture the details of what she has been through, along with the ups and downs of daily life in the NICU. Where possible, I have included photographs of some of those who were so involved in Erin’s care. I intend to make a scrapbook for her that includes each and every e-mail that we have received, each note and card, and of course the blog itself.

I am not a gifted enough writer to paint a sufficient portrait of the incredible people who work at Children’s Memorial. These are people on a mission, whether they are a doctor, nurse, or administrative worker. They have an energy and vibrancy that permeates the corridors of this hospital, and can be felt as you walk through them. I wish I could name and personally thank every single professional with whom we came in contact during the course of Erin’s care. In a strange way, I will miss this the daily routine of the NICU. We will be spending a good deal of Erin’s life at Children's on follow up appointments and routine checks, but it won't be the same. The people who work here are truly angels. We are better for knowing them.

My nature is to always try and find something good out of whatever comes my way. Often, it takes me awhile to do so. In this case, it was pretty easy. Obviously, we would have done anything to have Erin be perfectly healthy at birth. We weren’t given that choice, and since you play the hand you are dealt, here are a few things that I think are worthwhile takeaways.

First and foremost, we have both had the opportunity to bond with Erin in a far deeper fashion than we would have had she come home at birth. I can’t say that her growth and development is any better or worse than it would have been otherwise. But we have spent literally hours and hours staring into her eyes, holding her, and letting her know how loved she is. That has to be worth something special, for all three of us.

Sheila and I have always been extremely close. I have been lucky in that I married someone so special in every way, and someone who is so easy to live with. But this experience has brought us even closer. I will miss spending all day, every day with her. We have eaten lunch and dinner together virtually every single day for 5 weeks. There hasn’t been a single cross word or hint of tension between us during that entire time. I am thankful for being with such an incredibly special person who has been so very supportive and loving every step of the way.

And finally, we have been the beneficiaries of some of the best parenting advice and education that money can buy. The nurses in the NICU are world class at understanding and dealing with baby issues. That is all they do, every single day. We have received so many tips and helpful hints over the past 5 weeks; it almost feels like we have been through a graduate level course in baby.

We can’t possibly thank everyone enough for their thoughts and prayers. One of our friends who hails from Baton Rouge even had her mother’s Baptist prayer group praying regularly for Erin. Trust me, it was a diverse group of people praying for her and thinking good thoughts. It clearly helps, in ways that I can’t articulate.

And so, for now at least, the story ends. From time to time I intend to update this for Erin’s and our benefit, but I won’t be posting daily anymore.

Finally, thank you for your interest. We are eternally grateful to everyone for all of your support. You have helped to make a difference.

Friday, August 1

I will try to re-cap the past two days, although so much has happened that it is difficult to remember it all. We were overjoyed on Wednesday when we were told that Erin was doing so well she could go home on Thursday. Thursday afternoon, her room had the atmosphere of the last day of the school year. Everyone was upbeat, people from the NICU ward kept coming and going to wish us well, and everyone was having as much fun as you can have in the NICU. We were so happy on Wednesday that night nurse Haley was working the day shift and had Erin. Haley's friend Melissa, who had Erin the previous two nights, was also working in our room, adding to the festive atmosphere. We have found a nanny that we are particularly excited about, and she wanted to meet Erin, so Priscilla came by on Wednesday in the morning to spend time with Erin. She loved Erin so much that she held her for over three hours, and left only reluctantly. She also asked if she could come by this next week (she doesn't start until August 11) to see Erin. It was funny listening to Haley talk about her "replacement." Haley has taken a particularly strong interest in Erin. Luckily, she only lives a few blocks away, so I imagine Haley and Erin will see a great deal of each other.

We felt so good that we packed up at shift change, Sheila went to dinner with some friends, and I came home to rest up.I did make the mistake of calling Melissa to see how Erin was doing after two glasses of wine. When Melissa answered, I could immediately here Erin screaming in the background. Turns out that I managed to call just as they were taking her PIC line out of her arm. The PIC line was surgically implanted, and Erin had to be restrained to keep from moving as they took the line out of her delicate arm. Erin hates to be restrained, and thus was voicing her firm opinion of what was being done to her. Bad timing for a call.

Thursday, we showed up bright and early bearing gourmet cupcakes and cookies for the entire floor, and hoping for a quick getaway. Cardiology had already been there and given their sign off on Erin's discharge, so we only had to wait for rounds when the attending would write the order. The festive atmosphere of the previous day continued. One of Erin's other regular nurses, Nurse Laurel, was our nurse for the final day. We have been so lucky in that the nurses we had the most - Laurel, Julie, Sarah, and Haley - were all favorites of ours. All of them gave us their contact information and asked us to keep them up to date on Erin's progress, and to stop by whenever we were in the hospital so that they could see Erin.

Our trainer Tim Allegretti and girlfriend Barbie came by about noon to see Erin. They had no more than gotten their first look at Erin when we saw the attending come in. We were excited as we thought she was coming in to tell us we could go. Instead, she said that there had been a development, and she asked if we could go somewhere private to have a conversation. We walked to a parents waiting room, and it seemed to take a lifetime to get there. There are times when you just know, and this was one of them.

Dr. deRegnier had taken Robin Steinhorn's place this week as attending neonatologist. She had the unenviable task of telling us that the radiology department had apparently miscommunicated the results of Erin's MRI. Instead of a clean bill of health, it showed that she had suffered a stroke at some point. I won't cover the same ground I did in the previous post. Needless to say it was a very traumatic moment. We were both in disbelief that this was happening literally at the time we thought we would be going home. We were told that we needed to have a neurology consult, and that they wouldn't be available until late afternoon.

When we returned to the room, Sheila left to take a much needed walk. I was so concerned about her, as she was on her last reserves before this news. During her walk, cardiologist Jeff Gossett came up to talk to me. Jeff is our favorite doctor, in part because of his beside manner. Jeff had a patient who was receiving a heart transplant that very afternoon, and yet Jeff took the time to come up and sit down and talk to me because he cares. We discussed what everything meant to Erin. From a cardiology standpoint, it means nothing changes with her care. Babies that have a shunt put in sat between 75 and 85. Erin does that already without a shunt. I even got a picture of her pulse-ox monitor showing her sat level hitting 100, which it did twice Thursday morning. The fact of it is this type of stroke is not uncommon in cardiac babies. They only started doing brain scans prior to surgery for cardiac babies 10 years ago. During that time, they have noticed a frequency of these types of infarctions. Cardiac babies often have neurological issues, and the thinking is that it comes from these strokes.

The rest of the day was completely depressing. We had a couple of interns come up and examine Erin, and then finally five members of the neurology department arrived. Dr. Goldstein was the lead, and he examined her and then discussed things with us. Bottom line - we won't know what all this means for Erin for months, and perhaps years. We don't know if it is a brain injury that will heal with little remaining evidence that she had the stroke, or if it is brain damage that has a more pronounced impact. Right now, she shows no evidence whatsoever. She has very good motor skills, and passed all of their tests with flying colors. Dr. Goldstein explained that if an adult had this stroke, their brain would not recover totally and there would be significant permanent impairment. Babies are much more resilient, and because their brains are not fully formed, it is possible that if one area of the brain is damaged, another area will assume the functions of the damaged area, resulting in little impairment.

For now, the course of treatment is to examine her blood to see if there is evidence of a neurological event, and then to do a ct on her brain. That requires her to be sedated and intubated, and so we are going to wait on that for several months. She will begin to see a physical therapist to determine if her development is progressing normally, and take proactive steps if necessary.

Bottom line - she has a heart issue. We won't know the extent of how serious it is for months or years. We will watch it every day, see doctors every week, and walk on eggshells. And she has a potential brain injury. We don't know how serious it is for months or years. We will watch her everyday, see doctors and physical therapists, and walk on eggshells. When it rains, it pours.

Needless to say, the joy we thought we would feel when we finally left at 7:30 last night was very muted. We were excited to bring her home, but it was a very different feeling than we were expecting. I hate being negative, so I will try to put up a final post later when I have a little better perspective on things.