Home day 3 - and Daddy's birthday - Avery 12 days old

So today is day 3 at home (day 2 1/2 really) and it's daddy's birthday - needless to say - we didnt get out to get daddy a birthday present - I suppose a baby is gift enough huh? Avery had a good day today and was a superstar for her second photoshoot - slept through the whole thing. She is still super tiny at 4 pounds 10oz. She didnt gain any weight today - but maybe tomorrow? We have had amny inquiries about visitors - yes Avery can have visitors. However I have to remind everyone that Avery is a preemie - so that means if you are sick or anyone in your house is sick - please only visit us by phone or computer. Then when you get better we will welcome you to come meet our baby girl! We are approaching cold and flu season and Avery is at risk of getting very sick from such illnesses since she is a preemie. My job is to keep our girl healthy! Also - please dont be offended if you come to visit and I ask you to wash your hands or use hand sanitizer before touching her - new house rules. I will have some new photos to share of Avery - but it looks like I may be editing them until shes in college - I got so many cute ones!

Home day 2 - Avery 11 days old - August 30

Last night was our first night home and all in all went pretty well. Avery is starting to stir and fuss about every 3-4 hours - which is feeding time - so that is working out nice. It is tough right now because I have to get up and pump every time she eats, even is she gets a bottle. She is still nursing - but Im getting a little nervous that she is getting lazy. It's easier for her to get the milk from a bottle, so she tires out at the breast. We will just keep working on it I guess and maybe once she's back up to her birth weight (4 lbs, 13 oz) we can not do as many bottles - and more time at the breast?? I had Carl go and get a baby scale today so we can check her weight at home and today she was 4lbs 10oz - so we are slowly getting there. I did a little mini photo shoot today with her - and she was SO good - and slept through the whole thing. I have tons of pics to edit though. She smiles a ton in her sleep - and I was lucky enoug to capture a whole bunch of those baby smiles today. So we are plugging away and just trying to get in the groove.

Avery's first photo shoot at home :)

Home day 1 - YES we are home! Avery 10 days old

So the big news is we are home. We were discharged from the hospital around 12:30 - then we took Avery to her first pediatrician appointment. The not so good news is she failed her hearing test in one ear. Everyone has assured me not to worry that this happens all the time and usually the infant will pass if tested again in a couple weeks. SO... "not worry" - never going to happen! But we will take her to an audiologist in a couple weeks to be re-tested. I have been scowering the internet for details, and quite honestly it makes me more nervous. This girl is going to give me a heart attack. It does feel good to be home, although I am SO tired. Hopefully I will have some pictures by tomorrow to post - we are just trying to settle in for right now.

NICU day 10 - August 28

Avery took her car seat test this morning - and passed with flying colors! They have been mentioning the word "discharge" and it may happen awfully soon. If Avery behaves herself and doesnt do any preemie things between now and tomorrow morning she will be allowed to come home. It's both exciting and very nerve wracking. I am a total nervous wreck to have her home without the monitors that tell me that she is ok. She nursed once today and did a great job, and she is taking her bottles much better too. It takes her about 15-20 minutes to get down the 40cc's the require. We will be adding calories to her breastmilk at home too - at least until she is consistently gaining weight. I dont want to get overly excited about her coming home beacuse the nurses keep telling me - "never trust a preemie" Carl is coming in at some time to the NICU to do CPR training. I already have all my infant and child certifications, but I think it's really important for him to know what to do just incase he ever needs it. I will keep you all posted on the plans....... to be continued....

NICU day 9 - August 27

Avery had a good night last night, and was still doing well whn I got to the NICU this morning. She had her DNA samples done this morning and I went to fed ex and shipped them off to NYU. For those that dont know, because we did PGD (pre genetic diagnosis) to make sure she would not have Tay-Sachs, we had to have her re-tested at birth. We had an enzyme assay done last week and that showed that she does NOT have Tay-Sachs. Because you dont have mature levels of Hex A (the deficient enzyme that causes Tay-Sachs) until after puberty - we wanted to go ahead with the follow up DNA studies to be sure that she is not a carrier. Thanks Erin for going above and beyond to help us with the first sample!!! Avery had graduated to a crib! She is having no trouble maintaining her body temperature (although they have her bundled up like an eskimo). Now I suppose she is an official feeder and grower. She did not gain any more weight - so now we have to supplement her breastmilk with a calorie fortifier. I can only nurse her twice a day for now and the rest has to me bottle for the more calories. The Doctor chatted with me today about taking Avery home. I can hardly believe it, but if she can gain a little weight - she could possibly go home as early as Thursday afternoon. I dont think that is realistic since she just insnt packing on the pounds. She is 4 pounds, 4 oz right now. She will finish her antibiotics tomorrow afternoon I believe. The talk was good, and I told her how nervous I was to take her home. Lets face it, Im a wreck! i told her, I worried about my babies that wernt preemie's - but this one - I dont think I will ever sleep once shes home. I guess one thing at a time - and lets fatten that baby up!!!

More for Day 8 in the NICU

Here are a few pictures from last night. Brenden had a great time holding his new baby sister. This NICU experience is so emotional. Last night I saw Avery doing some weird twitching - makes me so nervous. We saw Conner have so many seizures that I immediatly think that is what was happening. Apparantly preemie's have an immature nervous system and they do all sorts of strange stuff - they twitch, and shake and have eyes that roll up, and often look crossed eyed. Thanks to the nurse Chris for telling me to "knock it off" and stop worrying. I am driving myself crazy. After everything we have been through in the past 3 years, I am a basketcase. Avery went to the breast 2 times today - I can only be at the hospital for about 1/2 of her feedings because Brenden's school schedule and at some point I have to sleep a little. They have this awsome scale in the NICU for breastfeeding to measure how much the baby eats. We used the scale for the second feeding and Avery took 20ml from the breast - that is terrific since it was only her second time ever breastfeeding. Her requirement is 40ml every 3 hours - so I did have to give her the remaining 20ml in a bottle, but hey - she did it! She finally gained some weight last night. They measure the babies in grams - so Im not sure what it is in pounds. She is not back to her birth weight yet, I know that. We are headed back to the hospital and I will be there for the 9pm feed and the midnight one - so hopefully she will do just as good as she did this morning. Also we had to get Avery a new carseat since she is so little - and she will be taking her car seat test maybe in a day or so. The NICU makes sure the babies can tolerate the position in the seat without dropping their heartrate or forgetting to breathe.

Day 8 in the NICU - August 26

So far day 8 has been a good one!!! I rushed to get to the NICU in time for her 9am bottle and much to my surprise, I got to actually nurse her instead of the bottle!!! WOW. I honestly hadent thought she would be able to even try for another week or so, and even then, I didnt expect her to do well at it. She did better than well, she latched right on and she did amazing! I will update more later with some new pictures - but I have to get big bro from the bus stop :)

Just one more picture - Day 7 in the NICU

NICU day 7 - August 25th and the first day of KINDERGARDEN!

So, today is day 7 and I am running out of steam! I know we have been getting many phone calls from everyone - and to be honest, Im just not up to talking. All my energy is totally spent and the very few seconds I get to myself - I just like to be myself. Once I get in a routine and maybe a little sleep - things will improve. This past week has just been totally exhausting! First the baby and then my "baby" goes to kindergarden! Brenden got up at 6:30 am, I guess so excited to go to his new school. I sobbed like a baby at the bus stop this morning. I was the only parent out there crying - I felt like a bit of an ass. Maybe the hormones, complete lack of sleep, and plain fact that my guy is growing up so fast. All and all Brenden had a great day and tomorrow he even wants to buy his lunch - WOW. Baby Avery has also had a good day. I took Brenden to the bus stop at 8:20, and got to the hospital by 9:15, just in time to do her feed. She did awsome!!! I stayed until 2:15 - and I wanted to stay all day, but I had to be here for my super hero kindergardner. She also did well with her 12pm feed. I called to check on her and her 3 pm one went well too!! this is awsome news because now she is getting off her TPN and lipids - which means they decided to take out her central line and put in a peripheral IV. I know this sounds wierd, but the infection risk is so high with a central line that - it's worth another IV poke to put in an IV. I am also hoping that this means she can get out of the isolette. As a PICU nurse - those little isolettes are too confining for me - I just cant get used to not having space. So, after Carl gets home from work - Im headed back to the hospital until after her 12am feed - then we do this all over again. Last night, I got a mere 2 hours of sleep - YIKES!

NICU day 6 - Sunday August 24

Day 6!!! Avery needs to complete a 10 day course of IV antibiotics for the pneumonia - so 4 more to go :) (thats if Tuesday counts as day1, not sure yet). She has had a good day. she is increasing feeds and is now up to 15cc every 3 hours. She is doing well, but taking a while to get it down. Most babies dont really have the coordination to eat and breath at the same time until about 36 weeks, and Avery is only 34 weeks now. She does well with that. She has only dropped her heart rate a couple times to the 90's when eating - so not too bad. She has had me a bit worried today because she is having some increased tachypnea (breathing fast) she is still on room air and doing ok, but I worry about everything! Also they wont let her out of the isolette until her central line comes out (after the antibiotics are done). I have gotten to hold her alot today which has been incredible. Also a huge milestone - Brenden held his baby sister for the first time today - and I did not have my camera with me - for those of you that know me - I am kicking myself for not taking it that one time. I will probably only get 3 hours of sleep tonight. It's 1 am and I just came home from the hospital (a nervous wreck being away from Avery, but Brenden has a HUGE day tomorrow - KINDERGARDEN!!!!) and I have to get up and get Brenden on the bus, and pump, and call the NICU every 10 minutes, and worry. I cannot stand being away from her!!!

NICU day 5

This is the morning of day 5 - we did take the nasal cannula off in the morning and she got her umbilical artery line out - yeah - one down, one to go! This is the day she gets to eat! Only 5cc's every 3 hours, but thats a start! Her weight is down to 4 lbs, 4.5oz.

NICU day 4

Avery had a good day on day 4!!! They day began with the news that she did infact have GBS pneumonia. at least now we had a reason for her really bad distress. They day was filled with tons of vent weans. So in 10 hours she went from super high settings to the lowest they could go without pulling the breating tube. The decision was to wait until day 5 and pull it in the morning. Again, Avery had other plans for herself. At 9pm on day 4, she self extubated for the second time. I was at her bedside (because I never leave) and I said to the nurse - I swear I hear her crying -and I did. So we took the tube out of her mouth and put her on a nasal cannula. She did AMAZING!!!!!

NICU day 3

This is the day I never stopped crying!!! Avery had me so scared - I was terrified for her. She was intubated - and on extremely high vent settings and still looked like crap! For those nurses out there - she was on O2 of 45%, 20/5 and a rate of 60 - yep, thats 60. Even with a vent rate of 60 - she was still fighting the vent so hard and having these episodes of extreme agitation every hour. They tried to sedate her - without a whole lot of luck. This sort of drama continued for the next 12 hours. In this 12 hours, I left her side for only 1 hour - at shift change - they made me go. It was this cycle of agitation, borderline blood gases and a psycho mom who couldnt get it together. Again we had to repeat another xray, because they wanted to rule of a pneumo. Thank goodness it was negative. By the end of day 3 - they were able to get her vent rate down to 45 - which felt like a huge defeat!

NICU day 2

So day 2 in the NICU.... Avery had been on CPAP, intubated, extubated and back to CPAP. We thought this would be it - she would do well on the CPAP since she had gotten a dose of surfactant...not so. Half way through the day, Avery began to work extremely hard to breath even with the CPAP. They thought infact that she possibly had a pneumothorax (whole in her lung). I am a complete mess by this point!!! Thankfully the x ray was negative for a pneumo - but showed worsening consolidation. They decided to intibate her for a second time and give her a second dose of surfactant. this time we knew the tube would stay in for a few days - she looked absolutly terrible. Then the real scary part began ... onto day 3

NICU day 1 - on CPAP

So the first day in the NICU began the roller coaster ride!!! Avery started off doing ok for a 33 weeker. She quickly needed CPAP and was working really hard to breath. Her chest xray showed RDS (Respiratory Distress Syndrome) - so they decided to intubate her (put a breathing tube down) and give her surfactant (a medication to help the lungs). The initial idea was to put the tube down, give her the medication and remove it. Well... didnt happen. They decided to keep the tube in for a day and see if her chest xray improved. Avery had some big plans for herself on Tuesday - that night she self extubated. (pulled the breating tube out) She immediatly went back on CPAP.

Welcome Baby Avery

Much to our surprise, Avery was born 6 1/2 weeks early on Tuesday, August 19th at 3:25pm. I woke up early Tuesday morning at 4:30 for the usual tip to the bathroom and noticed blood. I woke Carl up and called the doctor. We went to the hospital to get checked out and when I walked through the front door of the hospital, my water broke. They tried to stop my labor, but no luck and before we knew it I was 10cm and Avery was born. She came out pink and crying which was the best sound in the world!! I didnt get to hold her - the NICU team wisked her away to the warmer and checked her over. She needed some oxygen and quickly went to the NICU. We were so surprised that she was nearly 5 pounds! Her offical weight was 4lbs 13.4oz.