Thursday, July 31

I don't even know what to say. We spent the morning waiting for the doctor to come in and give us our discharge order. When she walked in, she asked that we go somewhere private to talk. Once we were in a private room, she told us that the information we had been given about the MRI being perfectly normal was a mistake. The truth is that Erin's MRI shows that Erin suffered a stroke at some point, whether during pregnancy, birth, or sometime after. The area affected is on the left side of the brain. Most unfortunate is that the area of the brain where the stroke occured is of major importance, as it has a significant impact on motor skills. The area impacted was described as a hub that takes in a lot of information and distributes it out to other areas of the brain, thus its importance. For now, the infarction is being described as a brain injury as opposed to brain damage, as they just don't know. We are waiting on a neurologist to come see us.

I feel most for Sheila. She is absolutely shattered. This was supposed to be such a happy, joyful day.

Wednesday, July 30 - Big News

Erin is coming home!!!!!!!!! Doctor's today caucused and decided that she was doing so well in her miraculous turnaround that there was no point in staying until Friday. She can come home tomorrow! We are thrilled beyond words. We also feel a little tentative, not wanting to jinx anything.

Every day, there is some drama. Today's drama was about insurance. Apparently, you need to actually enroll your newborn in your insurance plan. I thought it happened automatically. In reality, you need to do it within the first 31 days. I learned today that Erin's insurance coverage had lapsed, and that I had no health insurance for her. A relatively minor point, until you consider that her hospital bill will be in the six figures. Oops.

I turned to my assistant Dee Dickinson, who performed minor miracles and was able to get Erin reinstated on my group insurance plan. Dee has been above and beyond the call of duty in handling things in my absence, and this was no exception. Sheila and I were discussing it over lunch (at the Spicy Pickle - three days this week) and I told her that you need to be an expert in insurance to understand all of these nuances. Actually, it would be necessary to have a an insurance expert in the family to navigate the complexity of insurance today. Oh...that would be me. Another oops.

In the afternoon, I went to the hospital pharmacy to fill all of Erin's prescriptions. On the way, I began to think about the prescription drug coverage I have, which is a different insurance carrier. Sure enough, I wasn't covered on that one as well. After an hour on the phone, I was reinstated there too, but advised to pay cash for the first fulfillment and submit it to insurance. Who knew that a month's supply of liquid viagra costs over $200?

Besides the joy of knowing Erin is coming home tomorrow, the best thing about today was the reaction of everyone in the NICU. Word spreads pretty fast about someone going home, and we were constantly receiving nurses and doctors who had interacted with Erin wanting to wish us well and to share their happiness with us over her parole. It was quite a contrast from past days, which all were a grind. This was a day of happiness. It is also surreal to think that we don't need to show up every day. I joked with the staff that Erin and I were going to come on Friday just to hang out.

Our happiness is tempered by the sorrow over the tragic loss of 7 year old Carson Bosley. Carson's father is a key member of our MullinTBG family. Over the weekend, Carson complained that he wasn't feeling well and was rushed to the hospital. He suffered what is believed to be a massive stroke and passed away today. There are no words to express our sympathy for Jamie, Kelly and their family. It is impossible to comprehend.

We thank God every day for Erin, and have a renewed understanding on just how fleeting and fragile life is. Please keep the Bosley family in your prayers.

I will have a final post tomorrow with photo's.

Tuesday, July 29

Dad after a change of clothes, hoping the diaper is on a little tighter this time.

Erin this morning with no cannula!


The last 24 hours have been another emotional roller coaster, but for a change in a good way. Last night at about 6:30, the new neonatologist came in to tell us that the MRI was perfectly normal. We were thrilled and relieved. We had both been so apprehensive about what they might find, so the moment was very emotional. In addition, Erin kept her sat levels up in the 80's and even occasionally the 90's without any oxygen.

After dinner, I came back and gave her a bath. She doesn't like getting in the water, but once she is there, she loves it. She had a big smile on her face the whole time, especially when I was washing her hair. She no longer has the oxygen cannula on her face, so for the first time we can admire how truly beautiful she is (editors note - journalistic integrity requires that there be absolutely no bias whatsoever in this blog, thus this is a statement of fact :-) ).

I called this morning at 5 and found that she had a very good night, and that her sat levels stayed where they were needed. We had been very nervous about how she would make out overnight, but she did just great. What a relief! I woke Sheila to tell her and her relief was palpable. We both had a pretty sleepless night, but she was able to go right to sleep after the news and get some rest.

When we arrived here this morning to find her still doing very well. Amy Shah came by and was thrilled with where she is. The thinking is that if she can continue on this path, we can take her home on Friday!!! Needless to say, we are trying not to get too excited. We also have a ton of work to do this week, watching the required video's, taking the car seat challenge, and passing many other tests that they require before they will discharge a baby. She will go home on a monitor to check her oxygen sat levels, and will require at a minimum weekly doctor visits. We are happy about that, as we want to make sure she is perfectly ok at all times.

We again want to thank everyone for the multitude of e-mails and well wishes that we have received. The number of e-mails that we have received is well over 100. We are thankful for everyone's prayers and thoughts, and really believe in the power of prayer in situations like this.

Monday, July 28

Dad before the fateful "accident."

A very comfortable position to sleep in.





Nurse Laurel, who was the first nurse Erin had.

Attending cardiologist Amy Shah. Amy did a number of the pre-natal echo's on Sheila.

Attending Fellow Molly Ball, who has been with Erin since the beginning.

Erin's wild hairstyle - bed head at its best.


Well, today was a big day. Bottom line (I always want to know the bottom line first), in the cardio conference, there was a tremendous debate over Erin's treatment. Led by lead cariovascular surgeon Dr. Mavroudus, it was decided that even the smallest shunt would lead to Erin oversaturating her blood with oxygen and lead to congestive heart failure. The thought was that she would so overdo it that they wouldn't be able to manage her oxygen levels at all. As a result, she is now off all oxygen and we will wait to see how she does. This is a 180 degree shift from Friday, where they literally were throwing in the towel.

Over the weekend, Erin did fairly well, although there were times where her sats were just too low. Saturday was fairly depressing, but she seemed to rebound on Sunday. Right now, with no oxygen for the last 90 minutes, her sat level is 84. She is also in a very deep sleep, which is where her levels tend to be the lowest, other than when she cries.

We are going to give her a few days to see how she manages with no oxygen, and then reconsider the surgical option. The upside is that we have yet one more shot at getting her home with no surgery, at least initially. The downside is that we are now faced with managing our emotions so that we don't get too excited and face another crushing letdown.

Erin also had her MRI about 1 pm today. We don't have the results yet, and may not until tomorrow. Needless to say, we are highly concerned about the outcome of that test. How ironic would it be for Erin to beat the heart problem only to face another undiagnosed issue?

One of the little joys we have (ok, not so little) is when Erin is awake and alert, and interested in what is going on around her. Just after her MRI, while Sheila went to pump, I fed Erin. When you feed her, she tends to stare into your eyes while she eats. She is a very good eater, by the way, knowing just how to pace herself and not gulp food. After feeding her, she sat up in my lap and seemingly enjoyed the surroundings while we shot the breeze with one of the nurses. Even while I changed her diaper after a massive bowel movement she continued to coo and have a good time. As I was changing her diaper, I was kidding nurse Katie that I would put myself up against any other father in the hospital in a diaper changing contest. No sooner had I finished bragging about my diapering skills and sat back down with Erin in my lap when she decided to let loose again. At first, I didn't feel anything. Then I began to smell it, much more so than usual. Katie started laughing and remarked that we were about to put my diapering skills to the test. When I lifted Erin up, I found a remarkably large green runny puddle all over my lap and crotch (fittingly). I maintain there was a defect in the diaper. Katie maintains I am incompetent. In any event, it was everywhere. On the plus side, Erin seemed quite pleased with herself and was quite content while I cleaned everything in sight and changed her diaper yet one more time. I failed to mention that during her feeding she decided to projectile burp all over my black t-shirt. I guess she felt that between the combo pooping on Dad and burping all over him as well, she was having a very productive day. I saw more smiling from her after those two incidents than I have seen in the past! Needless to say, I am quite glad we live so close, as I was able to buzz home and quickly change. The nurses and Sheila found the whole event quite humorous. To tell the truth, so did I. I got a good laugh which I badly needed.

So now we are back in the waiting and watching sats game. We shall see.

Sunday, July 27

Erin loves her Mommy!



"What in the world are you doing to me, Dad?"

Waving to the paparazzi!

Happiness is a binky in Mommy's arms.


One of Erin's and our favorite nurses, Sarah.


The most comfortable spot in Erin's world.


I took a break from writing yesterday, and we just enjoyed Erin all day long. The latest isn't any better.

On early Friday evening, Robin was finally able to sit down with us to discuss the brain ultrasound that they were concerned with. There is a spot on the left side of her brain that has them concerned. Robin tried to caution us that it there was no need for alarm, and that we needed to wait until an MRI was done until we knew whether to be worried or not. I personally thought while this piece of advice was well intentioned, it was unrealistic. How could we not worry? The MRI will be done on Monday. I asked about the range of possibilities for the spot. Robin thought it might show a small hemorrhage that could have occurred during the birthing process, or it could be a spot that isn't getting enough oxygen. It is in the part of the brain that controls muscle movement. She again emphasized that we shouldn't worry until we get the results, so we wait for the MRI.

Her sat's yesterday were actually pretty good all day long, in fact the best they have been in several days. This was in spite of having her oxygen flow reduced to 1, which meant that she was only getting somewhere around 26 - 27% oxygen, compared to normal room air of 21%. She was awake and alert most of the day, and we had a great time playing with her. Every day she interacts a little more.

As we were getting out of the car today in the parking garage, Sheila remarked that perhaps a miracle was taking place and she wouldn't need surgery. That miracle proved to be short-lived, as upon arrival her day nurse (someone we have never met) immediately informed us that her sats during the evening were fair at best, usually in the low 70's. They were in the upper 70's at the time of the conversation. No miracle.

Tomorrow afternoon is the weekly cardiac conference, where all of the attending neonatologists, cardiac docs, and surgeons meet to discuss surgery options. Erin's case will be presented, and surgery will be scheduled for as soon as reasonably possible. As for the MRI, we probably won't know anything until Tuesday.

Friday, July 25

Nurse Julie with Sheila and Erin

This is her pirate eye look - one eye checking out things.

Night nurse Haley helps with the bath




Her perplexed look. I get this a lot from her.


Today marks the end of our first month in the NICU. It isn't a good day at all.

The doctors have caucused and determined that they have done virtually everything for Erin that they can think of, but it just isn't enough. Cardiologist Jeff came in to meet with us, and told us that they are ready to thrown in the towel. He is fine with her oxygen sats when she is acting normally, but when she gets upset she de-sats all the way down the the low 60's or even high 50's. He said that sending her home on oxygen isn't an option, as it is too dangerous. Bottom line is that we are going to totally wean her off the oxygen this weekend (current oxygen is 35%, and the flow level is down from 4 to 2). This is really just to prove to everyone that they are making the correct decision. At Monday afternoon's weekly cardio meeting, they will make the surgical decision and schedule it for sometime next week. Once she has the shunt, we are committed to her needing additional surgery. We aren't committed to a particular course of surgery or treatment, but there will be another procedure required at a future date. Needless to say, we are devastated at having come so close to avoiding surgery at this date, or even at all for that matter.

With the surgery and time needed to get her on the schedule, we are looking at a minimum of three more weeks of ICU time. As if this wasn't enough, yesterday they informed us that they needed to do a brain ultrasound, something that they do to all newborns. When they did hers originally, it was inconclusive. The purpose is just to make sure that the brain has formed correctly. They did another one this morning, and the neonatologist just came in to tell us that there is a spot they have found and are reviewing, comparing it to the original scan. She told us there was nothing to worry about, until we know more. I wanted to ask her how she would feel if I gave her that bit of news about her baby, and then told her not worry. I managed to hold my tongue, and given all of the events of today was pretty proud of that minor bit of self control. It isn't her fault. So we wait for the outcome of this test.

On the positive side, I gave her a bath last night that at least she didn't hate. Her first bath was a screaming fest on her part, but this one she just seemed somewhat perplexed. It was pretty cute.

I may not post much over the weekend, if I don't have anything to say. This is the low point thus far, and it is getting hard to find anything to write about that doesn't sound too depressing. Hopefully, the brain ultrasound will be normal, and surgery will allow her to come home and grow before her next surgery is required.

Thursday, July 24

Another day, another learning experience about the world of cardiac babies. Erin's sat levels overnight were consistently in the low to mid-80's, which is acceptable, and certainly an improvement over the 70's that she was experiencing early in the week. Aunt Sara flew in from Washington to spend the afternoon with Erin yesterday, which we greatly appreciated. A couple of Sheila's friends also came by last night to spend some quality time with Erin and support Sheila.

From a medical management standpoint, her oxygen flow has been reduced from full flow (level 4) to level 3. The oxygen content is down to 35%. She is now receiving multi-vitamins in her milk, which taste and smell badly. She just puked up most of the vitamins. In addition, she is now being supplemented with formula, which is causing her stomach to hurt. As a result, she was a little moody yesterday, although in pretty fine form this morning.

She is also getting a twice-weekly dose of epogen, which is designed to help her make red blood cells. Unfortunately, that dosage comes in the form of a shot, which she doesn't like. The goal is to increase her hemoglobin levels. I said we keep learning, and today what we learned is that her body will automatically increase the hemoglobin production on its own, in order to help get enough oxygen to her organs. A by-product of cardiac babies is that ultimately after a few more weeks, Erin will tend to overproduce the red blood cells, which causes the blood to thicken. It is more difficult for organs to get the thickened blood (at least that is my lay understanding), which causes the organs to be deprived from oxygen. This is one way that her body will tell us that she needs a surgical intervention to make sure that her heart can pump enough blood. This was new news to us.

The other piece of new news is that they want another head ultrasound. Every newborn baby gets one, to make sure that the brain is properly formed and that all the components are there. Apparently her first scan didn't show everything, which could be that the scan just wasn't well done. In any event, they now want a second scan. This is something that we haven't been kept informed on, and is yet another piece of information to stress over. The scan will most likely take place today.

I expressed my frustration over learning new information such as the excess hemoglobin issue to Neonatologist Robin. I told her that it seems like every day that we hear some good news, we then learn yet another fact about a cardiac baby that takes all the wind out of our sails. She agreed, and told me that this was a good example of seeing just how complicated these situations are, in terms of balancing all of the factors and treatment. It is highly complicated for the trained medical professionals, so you can only imagine how difficult it is for the layperson to get their hands around. The entire subject of Erin's condition and resulting treatment is very murky. It seems like every time we start to feel that we have an understanding of the situation, we learn new information that makes us realize just how uninformed we are.

I feel worst of all for Sheila. She desperately needs to hear some good news, and yet one is forthcoming. Between being here all day, and then having to pump milk every couple of hours, plus waking up twice a night to do it, she is running on fumes.

On the plus side, Erin is awake and alert right now, and interacting with Sheila in a way that is making them both very happy. It is a joy to watch.

Wednesday, July 23

Erin continues to be status quo. She isn't getting better, but isn't necessarily getting worse. The doctors feel that she looks better, although I still think that she is pale. We are now giving her medication to get her hemoglobin levels up, thinking that might help. She is basically at an in between state. She isn't a good candidate for a shunt operation right now, as her heart is pumping sufficient blood without it that adding in a shunt could cause her heart to send too much blood to the lungs, resulting in congestive heart failure. Additionally, they really want to avoid the surgery at this stage in her life, as it has it's own set of issues and complications. But currently, Erin isn't strong enough to pump enough blood without medical management. Hence the in between state, which means her stay in ICU continues to be open-ended.

Tuesday, July 22 update

A long day. We met with a number of doctors during the day to discuss Erin's condition. In addition, another echo cardiogram and chest x-ray was ordered to check how she was doing. The doctors were trying to rule out congestive heart failure. I can't even begin to describe how it feels to hear the doctor tell you that they want these tests to see if your newborn daughter is experiencing congestive heart failure. Luckily, the test results proved that she is not experiencing heart failure.

Her oxygen was kept at 35% (normal atmosphere is 21%), so she is getting very little supplemental oxygen at this point. She is still on high flow, which means they are forcing the air which helps to keep the airways open. It is unclear as to the impact this has on her.

In addition, the drug that helps the left side of her heart pump was eliminated, as it was felt that this drug might actually be causing her problems. Her blood is shunting from the right ventricle to the left, causing it to bypass the lungs and not be oxygenated. It was felt that the drug she was on (sorry, I am not at the hospital and can't remember the name) was exacerbating that reaction.

The main concern is that in spite of the increased med's, Erin is no longer improving, and has actually regressed. As neonatologist Robin Steinhorn described it, we are living on a sea of eggshells. The plan now is to see how Erin does through the balance of this week, and if she has not improved by Friday, she will be presented to the cardiac surgery council on Monday for open discussion.

Erin was really good today. She was awake a fair amount, and seemed to be having fun. She continues to eat like a champ, and when she sleeps, it is a very sound and deep sleep. Just before I put her down, Erin ended the night with another sneak attack and spit up all over my chest. At least she is thinking strategically.

Tuesday, July 22

Another roller coaster day, unfortunately. Erin continues to look pale, a trend that began showing itself yesterday. Her blood gases and readings are good, but she is clearly pale. Her oxygen sats have been hovering in the low 80's since her oxygen was reduced, and overnight were more in the high 70's. Naturally, as I write this and glance at the monitor, the sat level is 90.

Her oxygen is being reduced again to 35%, and the drug that works on her blood pressure is being eliminated. The Lasik is going from an intravenous application to oral. In rounds that just concluded, neonatologist Robin Steinhorn explained that asking her to eat and grow the way that we are is the equivalent of running mile after mile, taking a tremendous amount of energy. It just may be that she is at her limit in terms of her ability to cope with her heart issues. There is concern all around at this point, but all we can do is sit and wait to see how she does.

It is both maddening and disheartening.

Monday, July 21

The doctors have made a couple of changes to Erin's treatment. First, her oxygen content has been cut to 50%. Last week, they cut the amount of flow but not the oxygen level in the flow. This week, they dropped the oxygen level. She seems to be handling it well, but time will tell.

In addition, she is now back on unrestricted feeds. She can eat what she wants whenever she wants. At 3 pm, the little porker ate 115 cc's! Afterwards, she just wanted to hang out as opposed to going back to sleep. She was active and alert for about an hour, just checking out everything around her. She reacts to voices, and shows strong developmental signs.

I hate getting our hopes up. We were told today that most likely, if things go well, we have at least another week. As a result, we have scheduled our required CPR training, as well as our required child car seat testing. The hospital really puts parents through a battery of testing and education before they will discharge a child. Seems like a great idea. One of the positives in being here is that we have collected so much valuable information about taking care of a baby from the nurses. They are a wealth of knowledge, and eager to share it.

Sunday, July 20

There...I finally figured out a decent title for each post. Who would have thought of using the date? Duh....

Erin ended up having a pretty good Saturday, including a move to a new room. The room she was in was the most critical care room, and they needed to make room for a new inmate who was more serious than Erin. We are now in a slightly smaller room, with only four babies. The setup is not quite as roomy, and I miss the action of the other room, but it seems ok. BTW, her t-shirt in the pictures above reads "Does this diaper make me look fat?"

Last night, the nurses and Sheila conspired together, and I was sent home earlier than normal to theoretically rest. That worked well, as I finally gave up and got up at 4 am. The good news is that Erin had a good night, and slept almost all night other than waking for feeding. There have been no changes to her meds or therapy, other than another increase in food to 80 cc's every three hours. She is also getting her gas drawn less often, although her lactate at 6 am was at 3, which isn't good. This is so up and down, and you just never know from one hour to the next whether she is on the road to coming home, or whether she is showing signs that we are in for an extended stay which includes surgery. It is really frustrating, especially every time that we get our hopes up and she has a setback.

As I write this, Sheila is holding Erin and singing to her softly. Watching Sheila with Erin is really special. She is a natural.

Erin did have a great week with visitors, including a long visit from her grandparents on Sheila's side. Joe and Sandra, along with Joe's sister came up the day before Joe's birthday and spent a few hours visiting with Erin. Sheila's sister Mo and husband Mike each made a visit, as well as a variety of other friends who made the trek, including Uncle Alex from Washington, DC who flew in just to see Erin. A few friends even came to take us out to lunch or dinner, which was a nice break.

The coming week promises to be more of the same. Erin will either get better and go home, stay the same and require further care, or take a turn for the worse and need surgery. Pretty much business as usual. I read an interview with actor Ben Stiller recently, and he mentioned that the worst time in his life was when his newborn had to spend the first three days of their life in the ICU. Try 3+ weeks, Ben.

And to finish on a down note, John Barleycorn continues to show us absolutely no recognition whatsoever, even though we have eaten there at least 18 times in the past three weeks. If they don't shape up in the next month or so, we are going to get serious and boycott their establishment. That will show them.

Saturday

Erin seems to be in good shape today. Her overnight was good, other than a few crying spells, and her blood gases continue to be good. Last night, she received a new neighbor Alexander, who was born yesterday. He seemed find until they listened to his heart to find out that one side wasn't working. Alexander and his dad arrived yesterday at about 9 pm, in a fashion that reminded me of our arrival three long weeks ago today. In the entire contingent, between the Children's staff, the transport team, and family, there must have been 15 people next to our crib. Erin decided to let the world know how pissed off she was over her food restriction, and was crying uncontrollably for about 15 minutes. I finally got her calmed down by standing and holding her, and she was asleep when I left.

We have asked the doctors to discuss with cardiology increasing her food intake today, but haven't heard back yet. For now, things are status quo.

Day whatever update

This has been a day with extreme swings. After we received this morning's news, a new echo was ordered, as well as a chest x-ray. The echo was performed by the technician, and then Dr. Duffy, a cardiologist who specializes in reading echo cardiograms stopped by to do her own version of the echo. We later learned that the echo was quite good, and showed that as far as they can tell, there is little in the way of blood leaking from the tricuspid valve. The main leakage appears to be the hole she has between both chambers, known as ASD (atrial septal defect). Every baby is born with this hole, and in normal babies it closes over time. A cardiac baby's hole doesn't close, because the pulmonary pressure is greater than the heart's ability to pump blood, thus causing the leakage. At least that is my lay person's understanding.

The x-ray was also very good, showing a normal sized heart and liver. If there is substantial leakage by the tricuspid valve, the blood in the heart causes the heart to expand, which then backs up to the liver and causes the liver to expand. So again, more good news.

One consideration is that Erin ate like a little pig yesterday, consuming 110 and 120 cc's in separate feedings. One theory is that she has too much fluid, causing her heart to work harder than it should. As a result, she has been restricted to 65 cc's at feedings today. To make up for the caloric intake, her milk is being fortified. In her milk, she has the fortifiers, the viagra, the medicine to make her heart pump stronger, and finally a medicine to decrease her blood pressure. Sounds like quite a cocktail. Speaking of cocktails, I definitely need one after this day. But I digress.

As we sit her, her oxygen sats have been hitting over 90 a fair amount of the time, even hitting 99 on two occasions. I immediately lobbied for automatic discharge based on a 99 reading, but I was overruled. Who gave these doctors so much authority? I am beginning to suspect they are on commission.

Erin has been pretty happy all day, and awake a fair amount. Right now, she is sleeping face down on Sheila's chest, a new position that we have just discovered makes her very happy. And what makes her happy makes me happy. I wonder how much money that sentiment is going to cost me over the years?

Day whatever

Arriving at the NICU this am, we met with Cardiologist Jamie who gave us a bit of bad news. Overnight, Erin had turned diaphoretic. This is a condition that cardiac babies get, and is evidenced by her being clammy. Her liver had also enlarged, which can be a sign that blood is backing up on her heart. The second place it goes is to the liver, thus the engorgement. Her statistics have all been great, and her lactate at her 6 am blood gas was 1.5. Unfortunately, it is the other things that are bothering the staff. In the words of nurse Julie, she just looks more fragile today. She also thinks that Erin is turning more blue during crying spells than she did previously.

Jamie cautioned us that this may just be a bump in the road, a two steps forward, one step back issue. It is impossible not to feel really down about this turn of events. We had such high hopes walking in today.

To combat this, they are starting her on two oral medications. One will help her heart to pump more strongly, and the other will raise her blood pressure slightly. Both are medications that she could go home with. In addition, they feel that she may be eating too much, and that is causing her to have too much fluid. They are giving her a dose of Lasik, which is a diuretic to help her reduce her fluid levels. Finally, her oxygen flow rate has been turned back up to the maximum level 4.