Zoe's birth- Genevieve's perspective

We haven't had the time to sit down and post all of Zoe's history so we are taking it one post at a time. Previously we posted about Zoe's diagnosis and my labour story. Now I wanted to post about Zoe's birth from my perspective. I really wish now that we had it all on videotape. I think watching the video would be really hard in some ways but perhaps it would help me to process some of what happened. We tend to use this blog as an outlet for ourselves. As always, people can chose to read it or not. Some posts are more exciting (or cuter) than others. I like recording it all though, the good and the bad. I like the idea of Zoe being able to read her history and contribute to the blog herself some day.

For now, here we go:

The First Time I Saw Zoe
Gavin and I knew all along that we were having a girl- we both just felt it. The midwife student had accidentally told us late in the pregnancy that it was a girl, but we weren't too surprised. And so when the baby finally did come out I did not think to ask if it was a boy or girl. I just looked to see if the baby was ok. At that point, we knew about the heart problems so I was worried. During the pushing phase of labour, the heart monitors kept losing the heartbeat. We weren't seriously worried since we knew it was faulty monitors, but still I wanted to see for myself that everything was fine.

Unfortunately, that squiggly, pink, screaming infant was not the sight I saw. Instead I was met with a white/grey baby with a cord around its neck and I could see she was not moving. I had great fear about the cord being around the neck since I had an older sister who lost a baby during birth due to the cord being wrapped around the neck. My midwife quickly flipped the baby and unwrapped the cord that was wrapped around the neck twice. We are told that this did not harm Zoe in any way.

But back to first impressions.

The baby was handed over to the respiratory therapist who was already in the room due to knowing about the heart condition. Gavin held my hand but was looking at the corner where they took the baby. I told him to go to the baby. He took off and I immediately asked the midwife if the baby was alive. I can't remember her exact response, perhaps it was something about focusing on delivering the placenta. But I do remember that she did not give me an answer. I knew that was not a good sign and I asked again. This time she honestly answered, "I don't know."

It felt like forever, it was probably just a few minutes before Gavin returned to my side. I could tell by his face that there was something seriously wrong. He did say though that the baby was breathing. Later, I learned that Gavin had watched as they tested the baby's reflexes and his concern was how her arms just flopped at her sides and she never made any noise.

I could not see this.
I was busy delivering the placenta.
Stuck on a table.
Unable to see the baby or wrap her in my arms.
Which is what I wanted most.

Zoe goes to the NICU
After a few minutes? I am not sure how long, the respiratory therapist decided that the baby was not breathing well enough on her own and wanted to take her to the NICU. As they got ready to leave, I asked if I could see the baby. She brought her to me and finally I got to see her little face. Her eyes and mouth were tightly shut and her fist was on her chin. She looked pale but perfect. I could tell that she already looked a lot like Gavin. It took all of my self control not to grab her out of the therapist's arms. I could see that she needed to go to the NICU but I wanted her to stay with me. Gavin and I never got to hold her before she left the room. Gavin followed the baby to the NICU but was asked to wait outside while they got her settled. Intubation (for those of you who have never seen it) can be pretty violent and they don't usually let families watch.

Gavin and I wait to see the baby
After Gavin returned from being kicked out of the NICU, I could tell he was really worried. I tried to get him to sit down and relax (yeah right!) The midwives were amazing and got us some tea and toast. I had to wait at least thirty minutes until I was allowed to stand up. All sorts of scenarios ran through my head. I just tried to focus on getting something to eat and drink to build my strength. Getting Gavin to sit down for one minute. And getting to the baby as soon as possible.

The Doctor Gives us a Report
After about 30 minutes (again could have been more or less) a doctor finally came to update us on how the baby was doing. At that time, she was still just "the baby" since we had not named her yet. I can not remember all that was said but the doctor mentioned that something was seriously wrong. He mentioned rocker bottom heels and the small size (born at 42 weeks plus one day, Zoe weighed in at a whopping 5 pounds, 3 ounces) being indicative of a syndrome. Both Gavin and I have experience working with trisomy 13 and 18 kids who have rocker bottom heels. They do not typically live very long after birth. He told us the various tubes and why they were inserted into the baby. He also used words like "dsymorphic features, low set ears, wide nasal bridge, small chin." While I appreciated his honestly, I wish he had spoken to us after I could have seen the baby for myself. Because we had already learned that something was wrong, when I saw the baby in the NICU and had my first good look I kept looking for these "dsymorphic" features instead of just enjoying looking at my new baby for the first time. I suppose he just wanted to prepare us for what could lay ahead. But I still feel very sad that I never got to just hold Zoe and discover her for myself in those first minutes of life. It feels like even those first precious moments (which should be filled with excitement and bliss) were taken away and instead filled with fear, worry, and sadness. In some ways, it feels like most of her infancy was taken away in this manner.

But what choice did the doctors have? They thought that Zoe had a horrible syndrome that could kill her in days. I can not imagine how difficult it is to give families this news.

Anyway, back to Zoe.

First Trip to the NICU
The doctor said it would be ok for us to visit the baby. We immediately got a wheelchair and got ready to go. I remember the midwife looked very worried. This was her first birth where the baby was not healthy. She hid it well and was I not trained to read people, perhaps I would not have sensed her worry. I hugged her as I sat down in the wheelchair and I began to sob. I realized I would never get through the night if I thought about anything or hugged Gavin. And so instead, I just held his hand as he wheeled me down the hall.

As we approached the incubator the baby was in, we could hear staff talking. What I remember is a comment about it being good that mom had no drugs on board since the baby was so flat at birth as it was. Also, someone said something about it being a shame that it was our first baby and all. The midwife went behind the curtain and cheerfully said, "I have mom and dad here," which promptly shut the staff up.

My Beautiful Dsymorphic Daughter
It is difficult now to remember just what it was like seeing Zoe for the first time. Now, every curve of her face, every eyelash, every hair is so familiar to me. Then, it was such a weird feeling. Here is this child I carried inside of me for ten months and I don't even recognize her. When I saw her "rocker bottom feet" it made me smile. For months I had been feeling her zip an appendage along my insides. I could never figure out- was that a hand, a foot, a knee? It did not feel like any of these things. Now I understood it was a rocker bottom heel. And I knew that this baby was mine because I recognised the feet. I wanted to pick her up, snuggle her against my skin but I was not allowed to do more than hold her hand. I was not put off by the tubes. Gavin and I work in a hospital so the tubes did not bother me. But until the baby was considered "stable" we were not allowed to move her.

Naming Zoe
Gavin and I stood at her side, discussing which name suited her. All along we discussed names and Zoe was always a favourite of Gavin's. I resisted this name. It is complicated to explain it all but I will try.

The entire pregnancy, both Gavin and I always knew it was a girl. And we both always suspected that the child would have special needs. Was this paranoia from working at the hospital or just parental instinct? Gavin has a cousin Zoe that has down syndrome. I was worried that if we named the baby Zoe and the baby had special needs, everyone would assume we named her Zoe since the other Zoe had special needs too. This was a silly thought but I wanted to honour Gavin's cousin Zoe by naming our baby Zoe but I did not want it to mean less if the baby was going to die. That doesn't make sense I know.

Toward the end of the pregnancy I got a very strong feeling that the baby was a Zoe and I wasn't going to have much choice in the matter. Perhaps I thought by resisting the name Zoe, I would prevent the baby from having special needs? Who knows what twisted thoughts I had- I was a pregnant lady who was way overdue and just wanted to have this kid already!

I loved the name Zoe and its meaning. Zoe is Greek for "life." I thought this was perfect since Gavin and I never thought we would be able to have biological children together. I liked Zoe paired with Alexander, a good strong family name. Both suited Zoe well. And at that point we knew that this kid needed a good strong name to match her determined personality.

And so, standing by her bed I could see that she really was a Zoe. We had debated some other names and we tried them out. Said them to the baby to see if they would stick. But no, Zoe it was.

It wasn't until later that we decided for sure. During a bomb scare (what my American relatives who have heard my labour story must think of the Canadian health care system! I swear it is not normally like this!) we called down to the nurse to let her know that we had named the baby Zoe. She even made a little name card for her. But more on that in a later post.

We were given a picture and we knew what that meant....
While we were sitting with the baby, a nurse gave us a picture that she had taken of the baby. It was from the Linden Fund. My mouth went dry when she handed it to us. I knew these were pictures that staff took just in case the baby doesn't make it so the parents have at least one photo.

Suddenly I realized how serious this all was.
Suddenly I was really scared that we could lose her.
Up until then I thought, "I don't care if she is dysmorphic, has funny shaped feet, or has a syndrome. She is going to be ok."
Suddenly I thought, "Wow, we could actually lose her."

Now Go Get Some Rest- Yeah Right!
We were asked to leave so they could finish "settling" the baby. The midwife said she had to finish checking me and would help us get settled in a room. Again, my midwife was thoughtful and had us moved from the room with a roommate to a room with the second bed empty. If we had to have a roommate with a healthy baby that night, I don't know how we would have coped. As it was, it was a terrible night. I think we made it maybe three or four hours before we went back to the NICU. We were told to get some rest, who knew what the next day would be like. After having the baby inside of me for ten months, how could I leave her all alone with strangers? I couldn't stand the thought of her being without us. All we had with us was that picture the nurse gave us. Initially we could not look at it. All I saw in it was the dysmorphic features the doctor talked about and the possibility of losing her. Now, it is one of my favourite pictures of Zoe because it reminds me of the first time I really saw her and how far she has come. Gavin posted this picture on the very first post on this blog, so I won't repost it now. Instead, here is another wonderful picture of my beautiful daughter:

This picture is actually from the next day when we were able to just sit by her side and speak to all of the different specialists. We were still not allowed to hold her, but we could stick our hands in the incubator and touch her. I just had to include a picture to show just how gorgeous Zoe was at birth. It's hard to believe she is 22 months already. Where did my baby go?

Zoe's labour story

After a healthy and uneventful pregnancy (we had one small scare when they were unable to see her bladder and thought she had hydronephrosis but we were never very concerned with it), I prepared to leave work for a year. Being from the States, it felt very odd to prepare for a year maternity leave. None of my friends had ever done it. It was always return to work in a three months or leave your job (some friends were not even lucky enough to get the 12 weeks off). Gavin and I were more than prepared. Our hospital bags and carseat were ready to go since week 36 (it was a good thing we installed it at that time since if we had waited any longer, I don't think I would have fit in the car to help with installation!) I was excited to leave work and to tell the truth, I was unsure if I would truly return in a years time. A big part of me always wanted to be a stay at home mom and was hoping Gavin would secure a permanent position during my leave time. All of that was a year off, so I just focused on getting ready for the birth.
So I worked until three days before the baby was due and began having contractions on and off soon after I left work. Silly me kept thinking "this is it!" especially after one event of contracting for twelve hours straight with the contractions happening closer and closer together. However, the contractions would eventually stop and I began to realize this is not it. I had to start going to the midwife pretty regularly (every few days at first and then every day in the end). The midwife told me I was already a few cms dilated and so I really began to think "this is it!" I come from a very large family with lots of births every year and they are all healthy and uneventful for the most part. So, although I knew about getting induced or C-section, I never thought those things would be part of my baby's birth plan.
And so the week passed with me going to the midwife for stretch and sweeps of my cervix (just about as comfortable as it sounds) and us trying every trick in the book to convince the baby to come on out. I even bundled up (remember this was February in Canada) a couple of times a day and waddled around the neighbourhood until my feet were numb hoping that the activity would start labour. Now we know that kids with 1P36 lack the muscle tone to initiate the labour process. Although my body was doing its job- I was 4cm by the time I was induced, Zoe was just not programmed to come out yet.
After I was ten days over due and feeling pretty anxious, I went for an ultrasound to see how the placenta and amniotic levels were doing. We knew the baby was fine since Zoe was always very active and kicked me non-stop. We also had our own stethoscope and listened to the heartbeat several times a day. So we assumed that all would be well. At that ultrasound we found out two things. One, the baby was very small for its gestational age- they estimated it was six pounds three ounces. Two, the baby had something seriously wrong with its heart. The heart defect they thought the baby had was fatal and it was most likely not going to survive the birthing process. We were told to go home, relax, enjoy the weekend, and then show up on Monday to be induced if I had not gone into labour before that time. Because the baby was so small, they wanted to give it as much extra time as possible to build fat and strength before inducing me. The good news was that the placenta and amniotic levels were fine, so for now the baby was in the best place it could be.
To say we were devastated just doesn't really explain how we were feeling. After having so many normal ultrasounds where the baby was a perfect size, we were confused. Why it had suddenly stopped growing? Was it the heart defect? Is that why the baby was so small? If the baby survived birth, it had a 75% chance that it would die in the first few days. We didn't know what to do. Do we tell people? Do we just "relax and enjoy our weekend, haha?" In the end we decided not to alarm our families. Since we weren't 100% sure of what was going on, we decided to hold off. We spent most of the weekend crying, listening to the baby's heartbeat while crying, eating while crying.....you get the picture. We also continued our attempts at inducing labour.
Monday morning we showed up for another ultrasound and the tech was the same one from Friday. He looked horrified and said, "Why are you still pregnant? You should have been induced." Then the tech called in someone else who happened to know someone at Sick Kids and was able to set up a fetal echo for us. So, we would be able to find out exactly what was going on with the baby's heart before birth. That way, if birth would be too much stress on the baby's heart, we could plan a C-section. We had five ultrasounds that day and heard a few different hypotheses thrown around as to why the baby was small and what was wrong with the heart. The fetal echo showed right ventricle hypertrophy (thickening of the heart muscle) and we were told that at most the baby would spend a few days in the hospital and would be fine. We were overjoyed by this news. We now know that this was partly correct, but Zoe had five other heart defects along with the hypertrophy. The last ultrasound of the day we were able to see the baby peeing. It was kind of cool, despite the fact that we were so exhausted by that point.
Meanwhile, there was a gasket in an OR room that blew. What this meant was that the hospital we planned to birth at, the hospital my midwife had rights at, was not inducing anyone. When you start an induction, there is always a chance of needing a C-section. So, we were not able to start induction that Monday. People kept reassuring us that the placenta and fluid looked good which is why they did not consider the baby at risk so they could put us off another day or two. Someone mentioned returning Friday for induction and I think I shrieked at them "Are you kidding me!" Yes, I knew the baby was technically fine, but I also knew the risk of staying pregnant past 42 weeks. Our midwife (I can not say how glad we were to have midwives at this point and later) advocated for us to start induction on Tuesday. So, we left the hospital on Monday with a plan to return Tuesday. As a last ditch attempt at starting labour, I took caster oil that evening. The only thing it succeeded at was cleaning out my bowel! No contractions.
Tuesday we returned to the hospital with our bags packed and feeling quite anxious to get this all started. We wanted the reassurance of seeing that the baby was fine and to get a proper echo right away to find out what was really going on with the heart. We ended up sitting around the hospital all day Tuesday and were told to return at midnight (some emergency pts had shown up and therefore we were bumped).
We went home for a few hours of sleep. Returning at midnight for the induction was surreal. We parked at Sick Kids since it is right across from the hospital I would give birth at and we now knew that the baby would be transferred to Sick Kids after birth. The hospital was deserted and there was so much snow on the ground, I felt like we were on a movie set. They lock the doors of both hospitals that face University Ave which meant that a normally 5 minute walk took us about 20 mins. I was jogging and sweating up a storm and thinking "If this doesn't start labour, I don't know what will!"
After finally getting settled in our room, a doctor came to tell us that the induction would not be starting at midnight. The reason we were given is that all of the NICU beds were taken and if the baby needed any resuscitation after the birth, it would be very dangerous without the NICU bed space. At the time we were very annoyed at this reason, but given how Zoe did need resuscitation and the NICU bed after birth we are now very grateful for this doctor for being so careful. At this time (and earlier in the process) we were given the choice to go to another hospital. We loved our midwife and felt completely comfortable with her care. We did not want to switch hospitals because she would not be able to follow us. So, we decided to get some sleep. Even our midwife slept at the hospital with us that night. She did not want to miss the call if they suddenly gave us the green light to go ahead.
The next morning (Wednesday), our midwife advocated for us to move into one of the swanky new birthing suites. It had a tub room, TV, etc. Not that we cared at that point. And because I was hooked up to pitocin the whole time, I wasn't able to walk around much or use the tub room. The extra room did come in handy when the repository therapist and doctors had to rush in when Zoe was born.
At noon on Wednesday, when I was 42 weeks plus one day, the pitocin was finally started. It finally hit me that I was going to be induced after all and I cried. I know, how could I just be getting it right? I guess up until that point I still hoped that I would go into spontaneous labour. I did not want pitocin because I did not want an epidural or pain meds. I decided to go without both despite the pitocin and I can tell you that was not a good idea. I know labour is never comfortable or much fun, but pitocin without drugs was more awful that I thought it could be. I have a high pain tolerance. Anyway, I will spare you the gory details. Many of us have been there, done that. I can say it was way more painful than I counted on but it made it all worth it in the end when I overheard a NICU doc say that it was a good thing that "mom didnt have any drugs on board because this kiddo was born so flat. Who knows if the kid would have made it if her apgar was any lower." And so, the pain was worth it because although we thought Zoe was dead when she was born, she was not and who knows if drugs would have caused her any problems. Or maybe I would have needed a C-section and I can't imagine coping with post-partem recovery of a C-section on top of being by Zoe's side in the NICU.
So that is the story of Zoe's labour. There was some other random things I was barely aware of since I was in so much pain. At one point there was a chemical spill and so the pitocin had to be stopped. The plus side is that I was able to unhook from the IV and get a hot shower which felt really nice and helped with the pain. Also at one point, a friend from work brought us some lunch (had I called her? I can't remember) but it was really nice of her to bring us food. So, thank you Cathy!
We will post more about Zoe's birth story later. I just want to say a huge thank you to my midwife, Robin. The back up midwife, Joyce. And the midwife student, who I can't remember her name even though she got up close and personal with me by holding my leg during the pushing faze (it is amazing how you don't care who sees you at that point!) Our midwives were awesome in all of their support during the pregnancy, labour, and after. They even got us tea and toast while we were waiting to hear how the baby was. And they visited us and Zoe in the NICU several times. I don't know any obgyns who would have taken such care of us physically as well as emotionally.

1P36 stuff

Hey all,

we have yet to post a full history for Zoe, but that is a major project so we are taking it one piece at a time. Today's piece- what is 1P36? There is a Wikapedia site that covers most everything, and has a very cute picture of who I think is a young Whitney (Nate and Melanie's little girl- there is a link to her blog on the right there). It's pretty good- some of the info may have changed a bit though. Anyway, just FYI here's our take on 1P36 and Zoe in particular.

1P36 is a chromosomal deletion syndrome where a small piece of the end (the terminal end) of the short arm (the p arm) of chromosome 1 is missing. It is classed in a couple of different ways- the very specific where they count the missing base pairs of DNA segments (we don't know this for Zoe) and the not so specific where they identify the general segment of the 1P36 p arm where the break point occurs. The is generally classed as 1P36.1 (the largest deletion), 1P36.2 and 1P36.3 (the smallest amount of missing material).

So I was going to go through a list of the characteristics of 1P36 kids, but I'll direct you to the Wikapedia site instead. Here it is- http://en.wikipedia.org/wiki/1p36_deletion_syndrome

On to Zoe. Zoe has 1P36.1, the largest type of deletion. Her's occurred as a result of an unbalanced translocation of chromosomes at the time of meiosis (creation) of the egg or sperm- whether this was maternally derived or paternally we don't know. What happened is a piece of one of her 13 chromosome (I'm going to presume you all kind of understand genetics and how there are generally 23 pairs of chromosomes) jumped onto the end of one of her 1 chromosomes. This kind of translocation can occur in anyone, as long as nothing is lost (balanced translocation) there are no ill effects for that individual (though it can cause problems if they go on to have kids of there own). So Zoe, technically, has only 35 chromosomes, as one of her 13's is joined on her 1. When the 13 piece jumped, it knocked off pieces of the 1P36 and the entire 13p (small arm of 13) chromosome, so technically she has 2 chromosome deletions. We were told that the 13p segment was insignificant genetically speaking (though I have since learned that some 13q deletions are not such good news, so we got lucky there). Her deletions are classed as "de novo" meaning just by chance, or, in other words, she just lost the genetic lottery that causes 1P36 in an estimated 1 in every 5000-10000 births(surprisingly common, actually- it's thought to be the most common chromosomal deletion syndrome).

With Zoe, the clinical manifestations of 1P36 show up in a variety of areas. I'll break it down for you into systems.

Cardiac

Zoe has or has had a number of heart defects present from birth/soon after birth- an atrial septal defect (ASD), a ventricular septal defect (VSD), a patent ductus arterious (PDA), a weird ass tricuspid valve (yes, weird ass is a medical term), Left ventricle non-compaction cardiomyopothy (LVNC) and hypertrophy of the right atrium (as a possible compensation for the LVNC?). Most of these things have healed up on their own and don't show up on her echocardiograms (ultrasound of the heart) anymore, leaving her with the funky valve, slight hypertrophy (thickening of the heart wall), and moderate LVNC. The most worrying thing is the LVNC- it is a condition where the muscle wall of the left ventricle doesn't form properly in utero- it has a spongy (i.e. non compacted) appearance and can't push the blood around her body as well as it should. It's a rare cardiomyopothy, though we have now found 4 other 1P36 families whose kids have it, thus suggesting a correlation. Her ejection ratio (ER)- the percentage of blood in the ventricle that gets ejected per heart beat- is currently around 40%. The norm is around 65%. She takes Captopril, an ACE inhibitor, to lower the blood pressure in the major vessels around her heart, thus making the heart work less hard (terrible grammar there, but too bad). This is good because if the heart works too hard the tissue becomes fibrous, and if that happens too much the heart fails. This is not a definite thing, but if it does happen Zoe will need a heart transplant. Some people this never occurs, and they die at 95. Some, well, it does.

Communication/speech/hearing/vision

Like all kids with 1P36, Zoe has a profound speech delay. She has not developed the typical pre-verbal behaviours like typical cooing, consonant sounds, babbling, etc. Zoe is typically a very quiet little girl. Time will tell how much speech she develops. She is learning sign language though- 3 signs and counting!

Hearing- Zoe is somewhat hearing impaired, though to what functional extent we don't know yet. We see audiology every 3 months or so.

Vision- Zoe is quite far sighted (meaning seeing things close to her is tricky). She wears glasses as often as possible that have a pretty significant prescription in them. We have seen significant gains in her tracking and focusing in last couple of months- glasses on and off.

Development- Cognitive/Emotional/Social/physical

Zoe is learning new stuff every day, but it takes her a long time to learn things. Rolling took over a year, as did using a cup. Her eating has always been amazing, though slow and an enormous time commitment for us all. Breast feeding was a huge effort for her and Genevieve, and I am so proud of both of them for doing it because we feel it had a huge impact on how well Zoe is doing now. She is learning to sit unsupported for a few seconds at a time (up to 20 so far, and much longer with minimal support) and developing her standing muscles. We don't expect immediate breakthroughs, but we have seen some great progress in just the last week or so. Just like everything else with Zoe though, it takes time, and a lot of effort on her part (and ours).


1P36 features

Zoe was born with a number of the typical characteristics of 1p36. These include noticeable things noted in the literature like flat nasal bridge, wide spread eyes, pointed chin, small mouth etc and other stuff like microcephaly, large fontanels (soft spot on the skull- all babies have them), a sacral dimple (non communicative) etc etc. She also shares a lot of features that we've only seen by talking with other 1P parents- she doesn't produce tears, for instance and she is extremely fuzzy, like a lot of 1P 36 kids. When the kids get together you can really see what the geneticists talk about when they look for the characteristic dysmorphic features of 1P36- all the kids look like cousins- similar yet different. Very similar. And all very beautiful.

Anyway, I can't think of anything else to say about Zoe and her 1P36 stuff. I'm off to make dinner. Hope this has been a useful primer. Next up- Zoe's history!

First post- an introduction

Well, it looks like Zoe has a blog. I sort of inadvertently created it while looking at how to do it/options etc. So there you are- here it is. Genevieve and I have talked about starting one for awhile, and Zoe thought it was a good idea too. So welcome to Zoe's blog.

An introduction seems in order, but first a note on the name. We hesitated using 1P36 in the name/url of the blog because we didn't want to (and don't) define Zoe exclusively on the terms of her 1P36 chromosomal deletion. On the other hand, we know how much support and encouragement we have gained from our friends wondeful blogs about their kids with 1P36 (I'll post links to them as soon as I learn how), and we wanted Zoe's blog to be accessible to new families facing a disanosis of 1P36. That way hopefully others will recieve the same sort of support we have found. So I was messing around with names/URL's and apparently committed us to this name. Hope it's okay with the my two girls (i.e. Genevieve and Zoe!)

Okay, on with the introduction. Where to start? Well, Zoe was born on February 21st, 2007. She was born at 42 weeks plus a day- 15 days over due and had to be induced. When she was finally evicted, she weighed in at 5 pounds 3 ounces (about 2353 grams). She was very little, and had a rough start. She was in the NICU for a week, then in the hospital (incidentally the hospital where both Genevieve and I work) for another couple of weeks. She was about 8 days old or so when we got the diagnosis of 1P36 Chromosomal deletion syndrome, which we had never heard of. We will write more, I am sure, about these early days, but I'd rather tell you about Zoe now, so that her introduction is who she is now, not what happened to her when she was little.

So who is Zoe now? The picture at the top of this post is one of her most recent ones. Zoe is an amazing little girl, and both Genevieve and I love her and cannot imagine life without her. She is a little crazy sometimes- she loves to be naked and to be bounced on the bed and tossed in the air. She is really starting to get the hang of movement and rolling over and manipulating objects and toys with her hands. She loves vegetables and eating daddies food (not mommies so much)off his gigantic fork, which is a little nerve wracking for us as she is also very very wiggly (though less now then when she was first born). She loves to smile and laugh and grab noses and glasses and hair. She has 4 beautiful teeth and curly hair that tends to stick out in every direction no matter how much hard we try to brush it. She is a delight, and the best baby ever- something we tell her every day.

And so begins the somewhat accidental blog of Zoe Alexander Ross. I hope you enjoy reading about her exploits, and ours. To finish this introduction I will just add one picture- the first picture of Zoe ever taken when she was just a couple of hours old. It was hard to look at in the beginning, but now when we see it we are flooded with love and awe and admiration about how far our little one has come in just 15 months or so. She is amazing.

Zoe Alexander Ross

born Feb 21, 2007