Tuesday, December 30, 2008

Silly Giggly Girl!

So, we haven't updated in awhile and I thought I'd just jump on here to say a few words. We had a very happy Christmas with Nora! We hope you all had fun hanging out with us and with her!

Nora is going to be 3 months old on Friday. Where did the time go? Sometimes I feel like I've had no time to spend with her at all, that all of this time so far has been spent struggling to figure her out. Now that she's growing, giggling, and interacting with us more, I feel like she's becoming a little girl instead of a newborn. I want to spend every minute with her!

She's gotten to be an incredibly silly little girl. Her sense of humor and personality are really starting to come through! She often has giggle fits and makes silly faces. Here is one of her favorite faces to make:



We'll update again soon! Promise!

Sunday, December 7, 2008

Almost Christmas

It's been quite a while since our last update. Everything's going very well with Nora. She had her first vaccine at her last doctor's appointment, just this past Tuesday. She received only the Daptacel DTaP shot this visit and will probably be getting the RotaTeq rotavirus vaccine next week. We wanted to separate them so if she had any adverse reactions we could isolate the cause to a specific one.

She's up to 12 lbs pound now and is 23" long! This puts her at the 75th percentile for height (is it length until she can walk?) and weight.

Nora has been doing a lot of babble talking lately, she has moods where she'll throw a fit until we put her onto her back and let her just talk to us. She's holding her head up extremely well and has been sucking a lot on her fist, but hasn't yet discovered her thumb.

Aside from that, things are finally starting to settle down around here. After our loss of Leeloo, unfortunately things got worse before getting better. My grandmother (my mother's mother, and the last remaining of my grandparents) passed away a little over two weeks ago. She had been having heart problems for the past year, had a valve ballooning procedure a few months ago, which worked well at first, and actually had seemingly successful open heart surgery about a month ago.

Unfortunately while the surgery and initial recovery went well, she ran into some problems later on. The most significant problem seemed to be excessive fluid retention, which may have been caused by an underlying problem, instead of being related to the heart. She was back in the hospital at least a day before her situation got really bad, so there was at least some time when the doctors had a chance to intervene. While they ultimately not successful, I'm happy she had a chance to fight, both in the months of heart procedures and in the end. She was 90 years old.

We're happy that Nora's Great Grandma had a chance to meet her a few months back. While we're so sad she's no longer with us, back when we announced our pregnancy she was pessimistic about her health and if she'd be around to see Nora at all. It's good that her first heart valve procedure gave her a few extra months of time to meet her first great grandchild.

Thanksgiving was a bust, but we're looking forward to the Christmas holiday now. For a while we were thinking about adopting a dog or a third cat, and now that Cosette is alone we're pretty settled on another cat now. It's at least something new to look forward to.

Sunday, November 9, 2008

Goodbye Dear Leeloo

The past week has been a very rough one on us. On Monday, November 3rd, we were forced to say goodbye to our beloved cat Leeloo, after only knowing her for two years. After months of being sick to varying degrees, she developed an infection that her poor little body was unable to fight off. Our hearts are completely shattered. She was a huge part of our lives, she was my best friend, and she is very much missed.

A few months ago, back when we were doing a lot of renovation in the house to prepare for the coming baby, we noticed that Leeloo was occasionally not very hungry. She was still eating during the day but at certain meals she just didn't seem to have a huge appetite. We read a lot about how cats are particularly sensitive to stressing over changes around them, especially with their food dish location, we figured that might have been the problem. We moved the food to a more private location and all seemed fine. She was still acting like herself, begging for food, and usually gobbling it up.

Still, she had lost some weight and continued to do so. She was by no means a skinny kitty, but she used to be massive compared to Cosette, and at this point in time, Cosette was larger than her. We paid particular attention to make sure Leeloo was eating (thinking Cosette was stealing most of the food) but sure enough, she appeared to be eating ok. She was still acting just fine, running around, jumping all over things... just being herself.

A few weeks later, we decided to bring her to the vet because, despite still eating regularly, she was now quite thin. This was on a Monday. The vet drew some blood for tests and gave us the normal "I don't know what it could be therefore it's probably cancer" line.

On Tuesday afternoon we received the blood results, showing she did not have leukemia or anything else identifiable. We were told to bring her into the clinic's hospital for x-rays the following day.

We brought Leeloo in for x-rays on Wednesday, the same day Carrie went into labor. Her labor pains started early that morning but were still latent when it was time to drop Leeloo off, so she came with me to the vet hospital. By the afternoon, she was in active labor so I was fighting through rush-hour traffic to pick up Leeloo while Carrie was at home having contractions and the midwife was en route. I was told that the x-ray showed a mass on Leeloo's liver, potentially cancer, but they needed an ultrasound to get a better look. As luck would have it, the hospital's ultrasound machine and/or person was not around for three weeks, so I was given the option to wait (?!?) or go to another emergency facility for the ultrasound. I chose other facility.

On Thursday, after being up all night for Nora's birth, my mom and brother dropped Leeloo off for her ultrasound. The vet there thought the problem was probably a hairball in her stomach, not cancer! Well, after an ultrasound and subsequent endoscopic surgery, the surgeon actually removed a toy mouse from Leeloo's stomach! She apparently ate one of her $1 toy mice, causing all of this. Leeloo had a feeding tube inserted because she lost so much weight and her liver wasn't functioning properly.

After only a day or two of tube feeding, she was back to eating lots of food on her own. We were incredibly happy that she was making a fast recovery. That Friday, her liver tested ok and the tube was removed (she hated the tube). She was given some antibiotics for an infection she had on the skin near the tube.

It seemed the worst was over. Leeloo was getting back to herself, though still a bit slower she was doing a lot of the same things she always did. She was back to sleeping between my legs at night and laying across Carrie's lap during the day. It seemed all was going well.

Yet October 28th we noticed her appetite was waining again. I tried making her some special food she loves, we gave her some of the left over appetite stimulants we had, and I started giving her Nutrical because I was afraid her liver would get messed up again. She seemed to be eating ok again, but that only lasted a day or two. On Saturday she stopped wanting to eat much food at all, so I ran out to Petco to get a feeding syringe just to force her to eat something. We decided that something more serious was going on and would take her to the vet on Monday.

I fed her and she ate fairly easily from the tube on Saturday evening. But on Sunday morning, she had absolutely no interest in food. It was very difficult to get her to eat. I managed to get a good amount of food down, but when I put her back where she was sleeping I noticed she was breathing funny. I looked up to see if our vet had any Sunday hours. Carrie went over to her and noticed that her ears were really hot, so I took her temperature. 105.5F--way too hot for a cat! I contacted and immediately took her to the vet's off-hours emergency clinic.

The vet was very concerned by Leeloo's breathing and immediately ordered up an xray. It showed fluid in her chest cavity, pushing against her lungs and making it hard to breathe. The did a procedure to remove the fluid, so for a while Leeloo was breathing a bit better. They were pretty certain she had an infection, so they started her on antibiotics. I left her there for them to monitor and care for her and headed home.

If it wasn't bad already, it quickly got worse. The vet called within a hour or so to say that Leeloo had gone into respiratory distress. They had to do another procedure to remove the fluid and had the hard choice of giving her steroids for the breathing troubles (steroids are not good when there's an infection). They ended up also putting her into an oxygen chamber, but her condition wasn't getting much better.

At this point, it really hit us that this might not work out, but we were determined to give Leeloo every chance to pull through. Carrie, Nora, and I headed down to the vet that evening to see Leeloo and to talk to the vet again. We decided that we'd let her trying to get through the night in the oxygen chamber, and in the morning I'd transport her to the Garden State Vet Specialists for some more advanced care. We talked to the vet a bit later and was told that Leeloo got up to drink some water and peed a bit, which was encouraging.

The next morning, I picked up Leeloo around 6:30am. Unfortunately her condition was deteriorating. She had a few bouts of breathing problems overnight, and we had to take her out of the oxygen chamber to transport her. I rushed her down to GSVS, a 25 minute drive down the Parkway, and ran her in, immediately getting her back on oxygen.

A few minutes later, a vet came out to tell me that the prognosis was very bad, and seemed to imply that I should give up. Leeloo had been through so much the past two months, I wasn't going to give up on her. I gave the OK for them to continue to treat her as long as possible and set off for work.

On my way, I got a call saying that Leeloo was in respiratory distress and wanted to know if I wanted them to give her a breathing tube. Of course I did. A few minutes later they called to say she was crashing, and wanted to know if I wanted them to try reviving her. At that point, it really hit me. I debated whether it was worth any more discomfort to Leeloo, whether a bad outcome was already certain, and if dragging this out would only keep her around for a few more minutes of pain. She had been through so much so far, I owed it to her to have every opportunity to pull through, so I OKed resuscitation. I called Carrie to let her know what was going on...

Sitting at my desk, shortly after 9am, I got the call telling me that they were not successful. Our Leeloo wasn't able to be brought back. She was gone. This was the most horrible news I had ever heard.

I came home. It all seemed unreal, yet real enough to be incredibly upsetting. We had thought the worst was over, that she pulled through her toy-swallowing ordeal, but our optimism wasn't enough.

Carrie and I eventually gathered the strength to drive down to GSVS that afternoon to pick up Leeloo's body for burial. The vet told us that the fluid removed from Leeloo showed a septic infection, and was probably from the feeding tube. She said that it wasn't due to any mistakes made in her treatment, but that sometimes they get infections from the tubes. With the loss of bodyweight and the stress of the previous procedures, the infection was pretty well hidden from us, and when it finally started to get the best of Leeloo, it hit her extremely fast and hard. Her little body was simply too tired to fight it off, but she gave it her all.

The drive back home was strange. Carrie and I both felt that Leeloo was there with us, even though she was gone. There was a strange presence we felt with her body in the car with us, even though she was wrapped up and we didn't actually see her yet.

When we got home, I had to do what was necessary. I started digging for her burial. Three feet down, I finally finished and we could continue with saying goodbye.

We opened the box we took her home in and unwrapped her. She looked so sick, yet so peaceful. She was Leeloo but not herself. Our little kitty was just lying there, unable to see us and unable to feel us. We were so unprepared to deal with the reality that she was gone. We always imagined her living with us for 20+ years. She was Carrie's best buddy during the pregnancy and was there when Nora was born. We so expected Nora to grow up knowing Leeloo, and Leeloo knowing Nora. But the cold reality was that simply could not happen any more.

We let Cosette, Leeloo's biological sister, see her body. We don't know what's going on inside her mind, but we knew that she was looking for Leeloo, and we felt that this would help with whatever form of closure she might need. She came over and didn't seem to recognize Leeloo visually. She was sniffing around her feet, which smelled like some sort of sanitizer, but suddenly Cosette smelled near Leeloo's tail and reacted. She took another sniff, dropped her tail, and walked away. She knew. She knew her sister was gone and not coming back to play. We were actually surprised to get such a marked response, but are glad we decided to go that route. I would rather have Cosette need to deal with knowing Leeloo was gone than continue on walking around the house calling for her as she had been.

For her final few weeks, Leeloo loved sleeping inside Nora's stroller covered in a pink fleece blanket. We decided to wrap her in a piece of that blanket. We buried her along with some kibble that I had made (for when she felt better), some straws (that she used to love pulling out of the cabinet and walking around the house with), and a bag of catnip (remembering the time she grabbed and ran off with an open bag of it, getting it everywhere). We put her back into the cardboard carrier we picked her up in and proceeded outside.

There wasn't much to say, other than that we love you Leeloo and we miss you. We're so sorry that you had such a rough two months and we're sorry we weren't able to help you. We placed her in the hole that I dug, a hole placed in a location she used to see when looking out the kitchen window, and Carrie and Nora watched as I refilled the hole. Now she's at rest.

Carrie and I feel absolutely horrible. Not just because we miss her so much, but that we feel like we failed her. It was our responsibility to care for her, and somehow we managed to fail. Looking back, even as I write this, it seems obvious that something was wrong before we realized it, but such is the curse of hindsight. We cared so much for her, and at the time we did everything we possibly could to help her. We don't feel that we made any careless decisions. Any time something like this happens, one always says things like "if only I had done something sooner." But I don't feel that we made any ridiculous mistakes. Yes, we feel that we failed her because she's no longer with us, but we did everything possible to help her at the time. Each decision was made in her best interest at the time, knowing only what we knew then.

I miss Leeloo so much. Almost every night in the winter she used to sleep between my legs at night. In the mornings she used to wake me up with a kiss on my nose, and always used to beg me to feed her before I got into shower. For the two years she was here, I made almost all of her kibble and wet food by hand. I loved the way she'd come up and sit on me on the couch, gracing me with her presence. She'd sit on my lap, and if I had to pick her up to get up, she'd wait a few minutes to see if I'd return before taking the spot for herself. She used to come downstairs and watch me lift weights, just watching that and everything I would do. All that and more will be missed.

During the pregnancy, Leeloo was Carrie's shadow. She seemed incredibly aware of what was going on. She used to lay across her belly when Carrie was on the couch, and used to sleep on her hip at night. Leeloo was there to comfort her when she was feeling sick. We imagined her continuing to grow with Nora, but we're happy that she was able to be there for the birth and to meet Nora, even if only knowing her for a few weeks.

Leeloo's full name was Leeloo Dallas Multipass, named after Milla Jovovich's character in The Fifth Element.

Goodbye Leeloo. We love you. We miss you. We're sorry that we were only able to share two years with you, but we'd do it all over again in a heartbeat.

Wednesday, October 22, 2008

After 12 Days of Formula Feeding

Nora does not have galactosemia!!! Yay! Today we are back on breastmilk and off the stinky soy formula.

Back up two Fridays ago, October 10th, we received a call from our pediatrician telling us that the NJ Department of Health and Senior Services's newborn screening for Nora showed her as "presumptive positive" for galactosemia. We were told that the numbers were a bit "funny" because her galactose enzyme level was too low (they only screen for the GALT enzyme, there are actually two other enzymes necessary for galactose metabolism), but her accumulated level of galactose wasn't elevated, which it really should have been if her body wasn't breaking it down. The whole problem with galactosemics is that the unbroken down galactose accumulates and eventually poisons the body. So anyway, the pediatrician referred us to St. Peter's Department of Genetic Diseases for testing on the following Monday.

On that Monday, they take a blood and urine sample, tell us that the results should come in a week or less, and also told us her GALT level was 2.4 according to the state screening, where less than 3.5 was considered positive for galactosemia.

After a lot of bottles and simultaneous pumping (to keep up the breastmilk supply) Carrie called St Peters on Thursday to see if they could do anything to rush the test. They claimed they were going to see, but said it was pretty much in the lab's hands at this time.

So this past Monday comes and we get nothing from St. Peter's, Carrie called and left a message. We didn't get a call back from them.

Tuesday we got a call. The person at St. Peter's called the lab and they ran the wrong test. They needed us to bring Nora back in to take more blood! Their earliest appointment was Thursday. Right. That wasn't going to happen. I was away on a work retreat in Princeton and Carrie was at home with Nora. She directly told them: I'm coming today for you to take the blood and you are going to give me the results tomorrow.

Well, after some back and forth between the staff member and her supervisor, they managed to find time to take the blood yesterday and they overnighted the blood to the Mayo Clinic for the test. (Apparently the other lab that screwed up the first test has screwed things up before and actually had screwed another child's test up at the same time as well. As to why they continue to use that lab, I don't know. Maybe it's part of St. Peter's faith-based medical science.)

This morning the woman from St. Peter's confirmed that Mayo got the blood and would be running the test today. This afternoon, after calling them at 4:15pm, we were able to get them to analyze the results. Nora is fine! Her GALT level was 21! (18+ is considered completely normal.) Tomorrow we should get the genotyping results which will tell us if she's a carrier for one of the galactosemia variants, but that does not affect her body's ability to process galactose.

We're extremely happy. This is absolutely great news. A scare like this, even for a disorder that's fairly innocuous if treated, puts things into perspective. We cannot imagine what people have to go through when their children actually have a disorder that impacts their daily lives markedly more than what we experienced here. It's just insane.

So, in conclusion, we're extremely happy. We do have a few lingering questions:
  1. Why did the state screening show her levels so much lower than they actually are? Was the result simply wrong or has her enzyme production since gone up?
  2. Why did the pediatrician send us to the St. Peter's genetics department when they just took a blood and urine sample and sent it off for enzyme and sugar tests? They weren't going to do any genetic testing.
  3. Why do they continue to use a lab that screws things up? Why do they use a lab that takes over a week to make no progress when we've seen that, when sufficiently motivated, the results can be back in only a day.
  4. NJ Dept of Health and Senior Services, what exactly is your problem? I didn't mention this above, but yesterday we received a letter in the mail from them stating that our child tested positive for a genetic disease, included this completely useless flyer, and told us to see the pediatrician for a diagnostic test if we hadn't already. Classic galactosemics who are not treated are dead in two weeks from birth. I have to acknowledge that they did get their (erroneous) screening results to the pediatrician in less than a week, but this mailing to the parent is ridiculously unacceptable.
We're so happy that Nora is ok. And we're glad that this medical community exists to help us if things go wrong, but the level of incompetence we've experienced at all levels is just frustrating.

Saturday, October 18, 2008

Just hanging out


Not much is going on right now. Well, a lot is going on: eating, sleeping, crying (usually just Nora), and changing diapers! We're still waiting on the results of the follow-up galactosemia test, it'll be one week this Monday and unfortunately "about a week, maybe less" is the only information we got about how long it'll take.

Nora is taking her soy formula just fine now, but we're hoping that she'll be able to return (at least partially) to breastmilk soon. Her initial screening results showed low galactose enzyme (GALT) levels of 2.4 U/gBH but her accumulated galactose levels were normal. NJ considers this to be "presumptive positive" but this is only a screening, it's not diagnostic. At 2.4, Nora's GALT levels are not low enough for her to be considered a classic galactosemic: if anything, she has the duarte variant.

Duarte galactosemics only need to avoid galactose (dairy/breastmilk, some legumes and tomatoes) for the first year of life, and depending on the enzyme activity level, may only need to limit intake, not completely eliminate it. In NJ, the incidence of duarte is 1 in 4,000-5,000, and luckily the only known complications are cataracts, which is much better than what classical galactosemics have to deal with.

But regardless of how this turns out, Nora is absolutely fine. She's doing very well and is already having more and more awake time each day. She's looking around with more intent (looking directly at us and the cats) and keeps holding her head up a lot. She's a lot of work, and having this diagnosis hanging over our heads is just adding to the stress, but she's absolutely wonderful and we love having her around.

Monday, October 13, 2008

Lovebug

Called you for the first time yesterday
Finally found the missin' part of me
I felt so close but you were far away
Left me without anything to say

Now I'm speechless, over the edge, I'm just breathless
I never thought that I'd catch this Lovebug again
Hopeless, head over heels in the moment
I never thought that I'd get hit by this Lovebug again


I can't get your smile out of my mind
(I can't get you out of my mind)
I think about your eyes all the time
You're beautiful but you don't even try
(You don't even, don't even try)
Modesty is just so hard to find


Now I'm speechless, over the edge, I'm just breathless
I never thought that I'd catch this Lovebug again
Hopeless, head over heels in the moment
I never thought that I'd get hit by this Lovebug again

Kissed her for the first time yesterday
Everything I wished that it would be
Suddenly I forgot how to speak
Hopeless, breathless
Baby, can't you see?

Now I'm...

YEAH, OH

Now I'm speechless, over the edge, I'm just breathless
I never thought that I'd catch this Lovebug again
Now I'm hopeless, head over heels in the moment
I never thought that I'd get hit by this Lovebug again

Ohhh
Lovebug again

-- The Jonas Brothers, Lovebug

Saturday, October 11, 2008

On a much more serious note...

You really don't know what pain is or what it means to hurt until you receive news that something might be wrong with your child. We found out yesterday that Nora's newborn metabolic screen showed a marker for a genetic condition called galactosemia. I had to stop nursing her right away and we had to switch her to a soy formula.

I think my heart broke into ten thousand pieces, and then shattered into a thousand more. I couldn't even watch Chris give her the bottle. It has been a rough 24 hours coming to terms with the fact that for Nora, right now, the breast isn't the best - in fact, if she does have this condition, the breastmilk would be fatal. I've been crying my eyes out mourning the loss of our nursing relationship, and Chris has been, of course, a pillar of strength while I try to pull myself together and figure out how to come to terms with the fact that everything I learned and thought we would do is completely thrown out the window.

We go on Monday for genetic testing to see if she actually does have the condition. We won't know for 7-10 days what the outcome is. It's going to feel like an eternity. But in the interim, I'm going to keep pumping to keep my supply up as best I can, just in case it was a false positive and she can have breastmilk again.

If she does have the condition, it means she will be on formula and can never have anything with lactose. From the GANES website (http://www.galactosemia.com/galactosemia.html)

"Classic Galactosemia is a rare genetic metabolic disorder inherited through a gene from both parents, who are carriers. Normally, when a person consumes a product containing lactose, such as milk, cheese, or butter, the body breaks the lactose down into the sugars glucose and galactose. Glucose is used by the body for energy, while galactose is converted into usable glucose. In galactosemia, the enzyme that converts galactose into glucose is missing. An excess of galactose accumulates in the blood. The build-up of galactose is a poison to the body, and can cause serious complications such as enlarged liver, kidney failure, cataracts, and brain damage."

I would like to just throw this out there - you can never truly judge someone for what they do until you know their story. I always looked at women who fed their babies formula with digust. I couldn't understand why anyone would choose to give their baby an inferior product. I never took a moment to realize that maybe that woman doesn't have a choice. Maybe that formula is the best choice for her baby and for her family.

Similarly, after giving birth to Nora, I completely stopped looking down on women for getting epidurals. Previously, I thought those women were all weak - how could you do that and not want to experience childbirth? Well, now that I've experienced it for myself, I can totally see why -- and I cannot believe that I was so judgemental and short sighted.

Please keep Nora, Chris, and I in your thoughts.