Nora is 3 weeks today!

Today Nora is 3 weeks old. This would make her 37 weeks. If I would have had here today, she would have been considered full term.

I have been asking around and I am pretty sure we can go home next week. As I suspected, it sounds like most babies get out of here at 38 weeks if all they have to do is learn to feed even if they still have a feeding tube - as long as the parents are competent. I think we meet the competency criteria, so I think we will be going home next week no matter what her progress is.

She did great progress yesterday though, so maybe the tube will be gone sooner than we think. She drank 90% . So, today she is up to 6 bottles per day. She has had one feeding so far today at 66%. Her progress so far has been pretty up and down though, so although the trend is up overall - I am not sure that she can graduate from their whole program in 1 week. If she has perfect performance, she would have 6 bottles today, 7 tomorrow, 8 on Friday, Ad lib feeding on Saturday and Sunday. She would be home on Sunday or Monday. 38 weeks hits on next Wednesday, so that gives her 2 days of leeway to get released without the tube. But - as we know - this baby has her own path for everything that doesn't really follow the plan, so we will just have to go with the flow.

Andy and I plan to come to the hospital tonight for New Years Eve. When the clock stikes 12 we will be here for her midnight feeding. Counting down the milliliters....

Not letting go of this pacifier!

Nora vigorously sucks her pacifier while holding it with 2 hands, just in case it falls out. Reminds me of the baby on the Simpsons:

Today Andy and I met with a pediatrician, Dr. Baumgartner. She is in an office close to our house and seemed ready to help us with Nora. Plus, I called the office yesterday afternoon and she was able to meet us this morning. I called another office in town and they said they weren't available until January 13. So, I think we will go with the more accomodating one.

While we were meeting with Dr. Baumgartner, Andy's mom was at the hospital with Nora helping her with her 9 am feeding. She did well. 30-something/54 ml. At noon she drank all 54! Part breastfeeding, part from the bottle. She even downed the bottle after they dumped her nasty smelling vitamins in it. Polyvisol I think it is called. Turns the milk a putried green color and stinks. She didn't seem to mind though.

At 3 pm I gave Nora her first bath! Should have taken a picture but there was no time. She was screaming at the top of her lungs. She didn't enjoy the bath too much, but she seemed fresh and cozy afterwards. I didn't subject her to a bottle after her scream-fest of a bath wore her out. She got to sleep peacefully as her 3 pm meal dripped down her tube. Andy just fed her at 6 pm and she took 49, so I would say she is doing very well today so far.

Andy and I are getting sick of her being in the NICU though. We have started discussing the options for her to come home with her doctors - even if it is before she is eating yet. I think we could handle the feeding tube ourselves at home. There is really no reason for her to be there. She is not critical, not on any medication. During the day Andy and I really do all of her care. The nurses just track data like how many poops and pees and how much she drank. The only thing we don't know how to do yet is change the tube (insert a small tube in her nose and down to her belly). I think we could get her to eat better at home. Realistically, it could take another month or longer for her to master eating and I don't really want to be at the hospital everyday from now until February. I would rather have her home with the tube than at the hospital for that long. Not to mention the costs for just hanging out in the NICU trying to eat must be astronomical. (See my new poll to the right). So if anyone from Plante Moran is reading, you can tell HR that I am trying to save on health care costs by getting her home ASAP and learning how to maintain the tube myself.

Dad playing with Nora

Nora likes to have playtime in the evening after she eats.

Some thoughts on parenting in the NICU

Being a parent in the NICU is sort of a strange experience. Especially a first time parent. There is a lot of parental training required. Andy and I have watched hours of training videos (Don't Shake Your Baby, "Back" to Sleep, Car Seats, CPR, RSV, etc.), gotten stacks of handouts, have to go to car seat training, have the therapist show us how to feed, change, hold the baby, stay the night with the baby, etc. At first it seemed strange to me since when you have a term baby, you get a night in the Mother-Baby unit - then they send you home to figure this stuff out yourself. However, after 2+ weeks here, I think that it is starting to make some sense to me.

There are some parents here whose babies are in the NICU for months and months. Nora may be close to one month before she leaves. I think when so much time goes by, it starts to feel normal. Then, it is probably even more overwhelming when the NICU parents bring the babies home. While the nurses try to have us as the parents do many of the "parenting" tasks (change her, take her temperature, bathe her, feed her, etc.) - we can always go home or out to dinner and know that the nurses here will take care of these tasks for us. All of these "parenting" tasks take place in a stressful environment (constant alarms, no privacy, nurses looking over your shoulder while you change and feed the baby, doctors popping in a delivering dire news for 5 minutes then leaving). I have even found a study published by the Academy of Psychosomatic Medicine that finds that parents of NICU babies are at risk for developing Acute Stress Disorder and Post Traumatic Stress Disorder. I think that this is part of the reason that so much more training is given to NICU parents.

The other reason is that parents of NICU infants are often leading some pretty risky lifestyles. Many of the types of women who have preterm babies are those on drugs, homeless, abused, mental disorders, alcohol and drug users with no prenatal care. These parents have many other problems than visiting their kids in the NICU like transportation, other children, shelter, food, etc. Combine those problems with a 3 month stay in the NICU and it is a recipe for a bad outcome when the baby finally is released. The nurses have told us that it is not uncommon for parents to rarely visit their babies when they have been here for a while. Many of the nurses have commented that we are good parents so far. I think because we show up every day and have lots of questions about her progress.

So, after all of our NICU training - we should be pro parents when we bring Nora home. We have a one hour car seat class on Monday and I have to watch a few more videos on breastfeeding a preemie. We also have to do our overnight stay in the "practice" family room here when she is close to going home. We still have to do in-person CPR training (already saw the video). I have a few more training sessions with the lactation consultant and we are encouraged to go to the Tuesday afternoon NICU parents "Scrapbooking Club" - (I think I may skip that one). It is busy here in the NICU!

Waiting, waiting, waiting

Here are some pics from this morning. One where she is mad for some reason and another exactly 30 seconds later!

Yesterday Nora took the day off as far as feeding goes. She was pretty much sleepy all day. The nurses and doctors say that this is normal for her age. It is frustrating because I know that all she needs to do is eat to go home, but must be patient with her. The nurses here say that we should expect to see progress by 38 weeks, which is about a week and a half from now. I have read experiences of other parents of preemies on the internet and many of them say that it just "turns on" at some point and after that the baby eats. Sometimes this happens as late as 42 weeks. If she hasn't mastered it by 38 weeks, the doctor says we can see about sending her home with her feeding tube - I hope she just gets it figured out by then.

Right now Nora is given 5 bottles per day of 50 ml each. She needs to down 75% of this herself - then they will move her to 6/7 bottles, then 8 bottles. The remaining feedings are either breastfeeding through her tube. Once she eats 75% of the 8 bottles, then she moves to "ad lib" schedule and must eat her entire ration (about 400 ml - depending on how big she is then) in a 24 hours period on her own. Then she can go home.

I do not understand why they don't count the breastfeedings the same as the bottles, but they don't and it doesn't seem that I am going to get them to change the rules. I have heard that they say it takes more effort since a certain amount of the feeding from the bottle will just drip in her mouth. It seems to me like she is less fatigued though, and the amounts she is getting is about the same as the bottle. Anyway, this is the system and we will work her through it so we can get home, then we can worry about mastering breastfeeding. It is not going to happen here anyway because I am not here 24 hours a day.

The Rest of Life Goes On...

When I went into the hospital 2 weeks ago, we were in the midst of an overbudget, behind schedule master bedroom/bathroom remodel. In between coming to the hospital, coordinating relatives, working his actual job and having a baby, Andy somehow managed to get the contractors to mostly finish the project last week. Of course, like everything else on this blog - things never go to plan.

First our kitchen range broke days before I went to the hospital. We had replaced parts on it before so decided it was time for a new one. Also, I have always disliked the electric range, so we decided that as long as we were getting a new stove, we should get gas - which requires a new gas line to be run to the kitchen and a conversion kit to run the gas stove on LP (yes, we live in the country). The stove arrived last week, and even though the salesman said that they were all a standard size, it did not fit in our counter. We had to move the cabinet beside the stove over a quarter of an inch and hire a contractor to remount it as well as run the gas to the stove. A simple installation turned into another huge project depositing saw dust over every surface of the kitchen.

The first week I was home from the C-section, we had no sinks in our bathroom and no clothes in our closet. We are doing better now with sinks, and Andy has completed the closet - I just need to organize the clothes in it.

Our new bedroom has a new wall built in it that is perfect for one of those flat screen TVs that hangs on the wall. We bought one a couple weeks ago and hung it up. Worked great. Then the contractor came and hung some trim around the door on the wall. Who knew that the vibration from a nail gun isn't good for a TV? It didn't work anymore, Andy had to unmount it, box it up and exchange it for a new one at Best Buy. We don't have the new one hung up yet.

Our new remodel also includes space for a washer and dryer. We ordered them weeks ago. The dryer was delivered last week - but the washer was damaged. Apparently they have to manufacture a new one in China and ship it to us because we still don't have it. Luckily, we still have the old ones around on the first floor to use.

Finally, I woke up this morning and took a lukewarm shower in our new bathroom. I woke up Andy to let him know of the latest house issue. He is at home right now with his dad installing our new hot water heater that he had to buy today.

No new projects!!!! I just want to live in my house where everything works properly and I am not spending $1000 every week on some new appliance!!!! Is that too much to ask? Probably. There is always something going wrong. Maybe there will just be fewer things pretty soon!

Inspirational Reading

After Christmas Dinner at the Foresters, Andy and I went to see Nora at the hospital.

Andy read Nora "The Very Hungry Caterpiller." Hopefully she will draw some inspiration from the caterpiller and chow down!

Buster the Santa Claus

Buster wore his Santa coat to celebrate Christmas Day at the Forester house. We had a big Christmas dinner and lots of Christmas gift. Buster got a new ball and some treats. Nora got some gifts as well!

Christmas Eve

Christmas is a little different this year at our house. Needless to say, I did not do any Christmas shopping or put up any Christmas decorations at home this year. I would love to blame it all on the rough end to my pregnancy and early delivery, but honestly - I am always last minute with Christmas. So this year, the Vought family decided to skip the gifts and modify the usual Christmas dinner.

Nora got visits from her Grandma Sue and me in the morning. My parents, Jay & Staci and Andy & I went for dinner to the Fieldstone Grill. Then we went to Christmas Eve church downtown, then came to visit Nora for her 9 pm feeding. We took some Christmas pictures with Nora. She pretty much slept through the whole thing! Afterwards we went home and had a couple of drinks to celebrate Christmas Eve. No gifts worked out well for everyone I think. Maybe we will start a new tradition!

Here is Nora in her Baby's First Christmas shirt. She weighs 5 lbs today!

Grandpa Vought played with Nora for a bit:

Uncle Jay and Aunt Staci got to hold Nora:

At the end of the night, Nora was worn out from her first Christmas Eve!

MRI Results & other downers...

I spoke to one of the pediatric neurologists yesterday, Dr. Sweet. She showed me Nora's MRI pictures and explained more about her condition to me. The pictures were difficult to see because it is apparent that Nora's brain is different than normal from the scans. The left side of Nora's brain appears normal, while the right side is missing brain tissue in many areas. So, what we were seeing on the ultrasounds was not just an enlarged ventricle pushing on brain tissue, but just an enlarged ventricle from lack of brain tissue.

This condition could cause Nora several problems. First is developmental delay, ranging from mild to severe (not like we haven't heard that before!). Also, she is at high risk of having seizures. Finally, she is at high risk of having cerebral palsy affecting her left side. This should become evident within her 1st year.

Although none of this is a surprise to us, it is still hard to see the pictures and hear the actual words from the doctor. I guess she has been doing so well in the NICU, it is easy to start to forget that she still has a lot of other problems that will not be fixed before she leaves here.

Dr. Sweet did say that it is not a hopeless situation. She said that babies brains can compensate for damaged areas. When a part of the brain is missing or damaged that is supposed to take care of some function, another part of the brain can take over that job. Of course, like everything else, it is completely unknown to what extent Nora's brain will do this and what affect it will have on her. No one knows what to expect...

Kangaroo Care and Feeding Update

Here is our first family picture since the operating room. In the NICU, we do Kangaroo Care. Baby Nora lays out on my chest and takes a deep sleep - after she tries to get a good look at what is going on. There are supposed to be all sorts of benefits to premature babies from this. Plus,it is a good time for me to take a nap too!

Here is Nora about to go back to sleep. Her feeding continues to improve. She takes over half of all her feedings via her bottle. The rest is fed through her tube. She continues to practice at breast feeding, but she is not strong enough yet to get enough milk that way. The nurses say that she will be able to learn later. We will see. Her doctor and the occupational therapist say that she is making good progress and that they are sure her feeding will continue to improve and her struggles are just because she is premature, not because of any neurological issues. Once she is eating 75% of her food herself, they will switch her to an ad lib schedule where she can drink as much as she wants when she wants. As long as she is meeting the intake that the doctors want for her for a few days, then she can come home.

Other good news - she passed her hearing test! Dr. Purdy said this is a good sign since it shows that the nerves to her ears are not damaged. Also, her ears are shaped a little funny so he said that sometimes makes them worried about hearing ability (I think they look fine, but the doctor's have to be so picky). He did say that it is unknown how she will interpret what she hears, but it is a first step.

Later this afternoon we will move down to the 3rd floor. This is the "stepdown" nursery. This is for babies that are no longer critical. Most of them are working on feeding like Nora. I am looking forward to the move. It seems there is less beeping and buzzing going on down there. It doesn't seem to bother Nora, but it is driving me nuts to sit here all day listening to all these alarms constantly. Absolutely no privacy either. People constantly coming in and out and looking over our shoulders. The stepdown nursery is a step closer to home and some peace and quiet

Bronson Hospital

There has been some snow in Kalamazoo since Nora was born. This is the building that Nora is in at Bronson hospital. We are in somewhat of a schedule now. I come in from 9-5, Andy comes to the hospital from 3-10. That way, we are there for about half of her feedings. It is sort of crappy to have to get up and get dressed and go to the hospital everyday. Feels like I am going to work. Everything will be much better once Nora gets home.

Nora's Name

A few people have asked how we decided on Nora Elizabeth. We wanted a name that was not too common (like Amy in 1976) but not too trendy. My grandmother's name is Eleanor. This just seemed like too grown up of a name for our baby. We saw in one of those baby name books at Barnes & Noble that Nora is a nickname for Eleanor. Andy liked that name right away and so did I. So, she is named after her great-grandmother, but with her own version of the name!

Nora's moving up

Nora got to move to a crib this morning. She has been able to hold her temperature well on her own, so now she can move out of her isolette. The only thing left to tackle before she comes home is "ad lib" eating. She needs to consume enough food on her own demand without losing weight. She is about half way there now. She wakes to eat, but only finishes about half of what the doctors calculate she needs to grow. She is eating more each day, so it will be soon.

Nora awake

Nora wakes up to eat and seems to just quietly take in the action. She is eating a lot now (up to 40 ml per meal), but not all of it from her bottle. What she doesn't have the energy to drink herself, we give her through her feeding tube. Eventually, she will get strong enough to stay awake long enough to take her entire feeding without the tube. Then it will be time to go home!

Nora took her first trip out of her NICU room tonight. She had a MRI test done to get a closer look at her brain. Dr. Fain, the pediatric neurologist, is going to take a look at the test results and give us a better explaination as to what may be going on. He met with Andy today and was very pleased with how Nora was progressing so far in the NICU.

Nora's Room

The week I was in the hospital and Nora was born, my parents, brother and sister-in-law decorated and got furniture for Nora's room. Of course, I thought we had more time so hadn't started a thing! Here are some photos. I think it looks great.

I think we have a thumb sucker!

Nora likes to suck her thumb, fingers or fist. Whatever she can fit. She also likes a pacifier. I have never been crazy about the idea of kids with pacifiers, but I don't really care about that anymore. She can have them all day if she wants!

Hot Nights

I found one thing in the What to Expect book that is actually happening like they say in the book - Night Sweats! Hooray! Ever since Nora was born I wake up in the middle of the night drenched in sweat. I thought it was just from the surgery and drugs, but it is still going on. Very annoying.

http://http://www.whattoexpect.com/pregnancy/symptoms-and-solutions/postpartum-sweating.aspx

Just thought I would post this since no one mentioned to me to expect to sweat so bad at night so of course I had to Google it to make sure I don't have some sort of rare sweating disorder! (I'm not paranoid).

Hydrocephalus - Things are never what they seem - AGAIN

We talked to the Neurosurgeon today about Nora's "Hydrocephalus." Turns out, what Nora has going on in her brain is not Hydrocephalus at all. While her condition results in a larger than normal ventricle in her brain, it is not due to a blockage of the CSV (spinal fluid) that can be repaired with shunt surgery. Instead, Nora's brain on one side is formed differently, resulting in more space for the fluid to fill. The Neurosurgeon is just calling it Ventriculomegaly. Maybe the neurologist will give it another name. (Which is very confusing, because I always thought that that term was reserved just for mild ventricular enlargement, and hers is actually pretty large, but the Neurosurgeon explained that they do not diagnose it as Hydrocephalus without the pressure and enlarged head size). The good news from this is that Nora will not need shunt surgery, which is no walk in the park and requires lifelong surgeries.

We are now going to meet with a pediatric neurologist to learn more about the condition she does have; but they are not going to really know a whole lot more than we know now. I suspect that the neurologist will outline with us the full range of potential complications and outcomes we could expect from Nora's condition - from mild to very severe. I don't anticipate that there is an actual treatment for Nora's enlarged ventricle, but may be for some neurological symptoms that she may encounter from it. Of course, these are just my guesses until we meet with the neurologist; but so far I have been right on most of this stuff. (Thank goodness for Google!) With Nora's chromosome disorder, the doctors don't really know what to expect either!

It is difficult every time we have to face the news that Nora will be impacted developmentally; but we are really in the same place we were before this latest bit of news. We won't know the exact impact on her until she grows - so we just need to get her home and start living and see where we end up!

Grandma Sue and Nora

Today Grandma & Grandpa Forester stopped by. Nora is lucky to have so many visitors. Grandma Sue brought Nora a Christmas headband and got to hold her for the first time here.

Nora's Room in the NICU

Hopefully we can get her home soon. I will post pics of her nursery at home that my parents and brother and sister-in-law finished for her when I was in the hospital last week.

Grandma Vought and Nora

Nora got a lot of attention today. She was held all morning including here by Grandma. Her Dad and her spent the afternoon together. Maureen came to visit in the evening.

We are gradually increasing her food intake and she is doing really well tolerating it.

I am getting better too. C sections are not an easy route though. I am really sore and although I am not feeling sick, I am not yet able to walk all over the place comfortably and am still getting sleepy in the midday.

Sleepy Nora and Andy

Andy and Nora taking a break after her 9 pm meal. Even though she is only eating 6 ml per meal, the process seems to wear her out. She falls asleep while she is supposed to be burped!

I think she will eat more tomorrow. She has not spit up any food since last night. We will gradually increase her food until she is gaining weight without spitting up.

Nora's morning

I arrived at Nora's room this morning and she was getting poked. Normally they squeeze a little drop of blood out of her foot to do tests on. Today, they needed blood from a vein to run tests on. The nurse tried 2x's to pull the blood from veins in her head. She was really brave and didn't seem to feel it even though it did not look comfortable at all. Finally, the sharpshooter nurse had to be called and she was able to pull some blood from her arm.

Good news! Dr Rimke said that her Billyrubin levels are low enough to come out from under the phototherepy light! We switched it off and swaddled her up and she fell fast asleep.

We still have not met with the neurosurgeon. Dr Rimke says the Neurosurgeon has taken a look at the ultrasound from Day 1, has made a note in her file that they will follow up to monitor the progress of her Ventriculomegaly (enlarged ventricle). It is hard to be patient. I realize that the enlarged ventricle is not an emergency at this point, but it is still my nature to try to create order and plans around the unknown. I need to just be patient and happy that for now, there are no plans to make.

I have had a chance to observe some of the other babies in the NICU. Nora is really lucky to be doing so well. Many of these babies are going to have serious medical problems for the rest of their lives. Also, I thinks some of them may not ever leave the NICU. Very very sad. There are volunteers that play the guitar and sing soft songs at the sides of the cribs of the most critical babies. It is hard to hear them singing without crying. Very sweet. We are so lucky that Nora is doing so well in the NICU.

Peek a Boo!

Here is Baby Nora awake for a few minutes this morning. She is still under the bright lights for most of the day. We get to pull her off for a few minutes at a time to work on breastfeeding. At this point, her rountine is to snuggle up against me and immediately fall asleep. After a few minutes of this, we give her a tiny bottle of milk from a bottle. If she still needs to eat more, the nurse drips the remainder of her milk into a tiny feeding tube that runs to her stomach. Luckily, only a tiny remainder of the food is needing to go through the tube just now. We will keep trying to breastfeed, although the bottles are just so much easier for her, it is hard to see what her motivation is to breastfeed at this point since she knows she can get them milk from a nice easy bottle!

Dad feeding Baby Nora

She is eating now as much as I can produce. She gets 14 cc per hour of breast milk and IV fluid. Hopefully I can produce more soon. They do not give the premature babies formula yet, just IV to supplement. She is getting better at trying to breast feed. We give her 10 or 15 minutes to try, then she gets a tiny bottle of pumped milk like Andy is giving her here.

Hydrocephalus update

We don't really have any further information about this than that the neurosurgeon is supposed to come by tomorrow. We will see if we happen to be there for the 5 minutes he stops by. The neonatologists and nurses are pretty good about informing us of their findings though.

Basically all we know so far is the ultrasound and examination after she was born showed and enlarged ventricle but no extra pressure in her brain. So as of now we will watch what happens and come up with a plan - if any - of how to fix it. The neonatologist has said that maybe she just has a large ventricle. I have no idea at this point. Let's just hope that it is just some other unexplained anomaly and we can move on.

Medicine is great, but there is SO much that no one knows anything about.

Sun bathing

Baby nora has been under the lights for a couple of days. This helps her get less red and excrete billyrubin. She pulls the sunglasses off as often as she can!

Nora sleeping

After she had a bit to eat this morning.

She is working on breast feeding, but seems to prefer just sleeping after about a suck or two.

Today we stuck a small straw with milk in her mouth to give her the idea that this is time to eat. She ate it right up.

I got the staples removed from my incision. Not so bad. Lots of gross bruising. Oh well, I seem to be tolerating the vicadin well, so I hope to be able to stay on top of the pain that way.

I put the pants on I was wearing when I got here a week ago and they are way too big! Amazing how fast I change from pregnant to not pregnant.

Diaper Castle

I missed my baby shower on Sunday sine I was in the hospital.

Aunt Becky and my mother in law hosted and it went over well even without me. Thank you to everyone.

This is a diaper castle that Aunt Becky made.

Busy Day in Hospital

Today Nora and I had a busy day working on feeding.

The doctors in the NICU said when Nora was born to anticipate that she will be in the NICU until she is about full term - which would be sometime in January. Now that she is here, we have learned that the criteria for going home is depends on 1. Her ability to breath on her own, 2. Her ability to maintain her body temperature, and 3. Her ability to eat on her own and maintain weight.

She has been able to breath since the first day! There was a lot of worry about this since at 34 weeks the infants lung may or may not be fully developed. Nora came out and started breathing right away. She had a little bit of oxygen to help her out the first day, but less than I did!

She is getting better at holding her body temperature every day. She is kept in a little incubator called and "isolette." The temperature of her isolate today was about 83 degrees. She is able to maintain her temperature at a normal 98 degrees. They will continue to turn down the temperature until she is out of the isolette and can hold her temperature out in the open. Then she can wear regular clothes too.

Finally she needs to eat. I have fed her a couple of little bottles of breast milk. I have been pumping and the nurses have been feeding her breast milk too. She sucks it right down. We have tried twice to actually breastfeed and neither of us have it quite down yet. We are going to try again tomorrow. I am happy though, at least she know how to eat! The nurses say many premies just have probablems sucking and swallowing and she seems to be doing great.

So, I think she may be home sooner than we think, once we get to be feeding pros!

December 13 Picture

Nora's Birthday - December 10, 2008!

In the meantime, Mom gets sick....

Sometime in November, the midwife was noting that I had high blood pressure at each of my visits. I brushed it off as the additional stress from learning and readjusting to the reality of the baby's chromosomal and hydrocephalus problems. Due to the baby's problems and my rising high blood pressure, I switched doctors in mid-November from the Bronson Midwife Service to Dr. Austin - a perinatologist specializing in high-risk pregnancies.

Dr. Austin put me on high blood pressure medication and told me signs to watch for preeclampsia. I woke up on Sunday December 7 - the day of my Sherwood Family Baby Shower! - with some of these symptoms. Andy and I went to the hospital and after some tests discovered I had HELLP Syndrome.

HELLP Syndrome is a rare and severe form of preeclampsia. HELLP stands for: hemolysis, elevated liver enzymes, and lowered platelets. HELLP Syndrome most often affects the liver, causing stomach and right shoulder pain. HELLP Syndrome is most dangerous because it can occur before you exhibit the classic symptoms of preeclampsia. It is often mistaken for the flu or gallbladder problems.

After a few days in the hospital and monitoring of me and the baby, the baby was finally not getting enough blood from me on Wednesday, December 10 and we decided it was time for a c-section. I was 34 weeks pregnant. Nora was born at 8:49 pm. She weighed 4 lbs 9 oz. Pretty big for a 34 weeker I think! Just think if she would have made it to full term.

I got sicker for a couple of days and am now on the mend. Nora is doing well and is responding just like any other preterm baby right now! She has been breathing well from birth, she is starting to maintain her temperature well and will soon start to eat!

We don't have a lot of information yet about the path forward on her hydrocephalus, but will learn more soon. She has had a batter of other tests including tests of her kidneys which look great and an echocardiogram on her heart which looks normal. These were things were were concerned about because of her unbalanced translocation.

History up till now...

In September 2008, we had our Ultrasound to examine the baby and find out the sex. We were trilled to find out we were having a girl and left the ultrasound with a strip of black and white photos to save of our baby.

A week or so later, a nurse from the midwife practice gave me a call and said the doctor would like me to return in a month or so for some additional ultrasound measurements, specifically of the baby's brain. I asked her if it was something I should be worried about and she said no. So I didn't.

We returned in late October to discover that the right ventricle in the babies brain was enlarged above normal. Normal babies have a ventricle that holds spinal fluid that is a size of 7 mm. Our baby's was 10 mm at our September ultrasound and 16 mm at the October ultrasound. Also, her kidneys were slightly enlarged. This brain issue is called ventriculomegaly or hydrocephalus - depending on how bad it is. At this point, we met with the perinatologist and genetic counselor and they recommended genetic testing - just for peace of mind.

We agreed to the amniocentesis procedure in November. In this procedure, a small amount of amniotic fluid is extracted from my belly and tested for chromosome abnormalities. Within a week we got the good news that the baby did not have Down Syndrome, trisomy 13 or trisomy 18 - the most common chromosome abnormalities. We were told it would take another week for the complete karyotype, but only very very rare types of chromosome abnormalities were left, so we were likely in the clear.

Turns out very rare is not rare enough. We learned that Baby Nora has a rare chromosomal disorder. It is called an unbalanced translocation. Basically, she has a bit too much extra of chromosome number 4, and is missing part of chromosome 8. The extra part of number 4 is attached to number 8. This abnormality is in every cell of her body. Although unbalanced translocations in general are only sort of rare, this very specific abnormality involving chromosomes 4 and 8 is extremely rare (maybe only a handful of reports in the world).

Basically, we have learned that kids with unbalanced translocations of any type can be expected to have a variety of physical and developmental disabilities throughout their lives. This is likely why she has the hydrocephalus and the enlarged kidneys. The extent of her cognitive delays will not be know until she grows up a bit.