Updates on Ava Rene'

June/July

2010-08-12T20:50:00.000-04:00

So sorry for the delay in getting this updated...I know it's the theme of this blog!

First thing's first...I can't believe I'm planning her first birthday party!! This is crazy!! But lil' Miss Ava will be 1 next month! Who would have thought sooo much planning would go into a one-year-old's birthday!

Ava is doing GREAT! We were cleared to stop Pulmicort! They said her lungs sound good so no need to continue! We were also able to get rid of the oxygen machine and apnea monitor! What a relief! I remember getting trained on all that equipment about 2 weeks before she came home and I felt so overwhelmed. Now it's gone!

On a kind of sad note, I started working again so Ava has started daycare. I'm happy she's getting structure and she's learning a lot, but I do miss spending so much time with her. But overall it's for the best.

At last weigh in she was 14lbs 4oz, again still small for her adjusted age. She has 2 teeth and is sitting up on her own! I think she will be crawling soon as she gets to where she wants to go alreay just by rolling and pushing off of things.

Other than that...everything is great!! Next time I will update with pics from the party!!

April/May Update

2010-05-24T12:59:00.002-04:00

First...please go vote for Ava at http://photos.parents.com/category/vote/photo/297105 to get on the cover of Parents magazine! I believe voting ends May 30th, so if you can vote daily!

Ok now for the update! Ava is doing really well; getting big and hitting all her milestones based on her adjusted age. She's rolling over, squealing, laughing and imitating faces. She is having some reflux so we are going for a swallow study in June.

We weighed her on Saturday and she was 12lbs 6oz! Still small even for her adjusted age of 4 months, but it's not like she was going to be a big baby if she'd been full-term. We're getting more use out of her infant carseat and newborn clothes!

In April we had family pictures taken by a friend of a friend and they came out great! And for Mother's Day I took her to Picture People and those came out great too! Many of you have already seen them but I will post them here for those that haven't seen them.

Thanks for keeping track of her progress!

March Update

2010-03-31T14:49:00.000-04:00

We FINALLY were able to get rid of the oxygen!!! One day after her 6 month birthday!

She's starting to hit her milestones, we have to go by her adjusted age until she's 18 mos or so. And Karen as for your questions regarding birthdate, yes we celebrate her actual birth date, but as far as milestones we have to go by her adjusted age which would be from her due date. We do this until 18mos to 2 yrs as by then she should catch up. So adjusted she is almost 3mos. She's socially smiling, cooing/ahhing, following objects with her eyes/across field of vision, can bear weight on her legs, holding her head up, turning her head, and doing mini push-ups when on her belly!

She is getting so big and strong so fast! She's finally hit the 10lb mark!! And you can tell she is much happier without the oxygen! And so are mommy and daddy. I can actually go to a doctors appointment without help!

And we've slowly started taking her places and introducing her to people. We still haven't allowed school-age children to meet her since they carry a lot of germs. But now that the weather is getting nice and she has one more synagis shot, we will get to have her cousins Leura and Zariah over!! I know they are so excited to meet her!

March was a busy month but overall a very good month as far as progress goes! We go on April 16 for her 6 month immunizations (yes I know she will be 7 months) and I am going to ask for another MRI of her head. I just want to follow up on the extra fluid they had found when she was in the NICU. Her doctors don't seem concerned, but it would make me feel better to follow up and see what's going on. At this point you can't help but feel anxious to get an all clear when it comes to brain development as that can indicate other problems (ceberal palsy).

I will post again in April!!

Latest on Ava

2010-03-08T17:14:00.000-05:00

I know I start every post like this, but sorry for taking so long to update! Being home with Ava has kept me busier than I thought.

So to keep it short and simple, here is the latest...

Medical Updates:

Eyes: Good, no sign of ROP. Follow up appointments every 3-4 weeks; next one 3/10.
Lungs: had 1 trial in Feb to get her off of the O2. Her sats were 92-93% while she was sleeping. Not bad but why make her work. They want to see her at 97%. So we will try again on 3/17. She is still getting her Synagis shots to protect her from RSV.
Pedi: up to date with her vaccines, treating her like a full-term baby now!! Cleared to get out of house but use common sense; no crappy weather, sick people or school-aged children.
Hematologist: go back for blood work on 3/26.

Development/Milestones:

She is so smart, she tries to copy me when I make noises with my mouth!
She is officially social smiling!
As of last week she is up to 9lbs!!!
Today she is 2 months adjusted (2 mos from her due date) and in 8 days she will be 6 months!! I can't believe how fast it has gone by.

Update on Doctors Appointments

2010-01-25T21:34:00.000-05:00

Last week Ava had 2 appointments...one with the Hematologist and one with the Pulmnologist. Both went great!! The hematologist wants to see her at the end of March to check to see if she is a carrier of Sickle Cell, since Will has the trait. Her platlette count was good at 204K, so he isn't too concerned about that anymore.

The Pulmnologist gave her her 3rd Synagis shot (a vaccine for RSV). Ava will get these shots every month until April and next year during RSV season (Sept-Apr). You can learn more about RSV here. She said we can start to wean Ava off the O2 by turning it off for 10min a day. When we go back next month they will try her off of it for 45min to an hour.

Ava goes back to the eye doctor on Wed for her 3 week follow up.

She's So Smart! and Big!!

2010-01-25T21:18:00.000-05:00

The other day I put her in her play mat with a mirror. The mirror has a black/white spinning ball on it...I would spin it and then Ava would! It was so cute. Before taking the video she spun it about 10 times!! She's so smart!! I tried uploading the video but it didn't work. Anyone know how?

We weighed her tonight after her bath...she's up to 6lbs 10oz!! It's so cute, she has a double chin and rolls on her thighs! Who would have thought that our little 15oz babygirl would have rolls!

Prayers for Preemies

2010-01-16T21:04:00.000-05:00

My sister has created a braclet for Ava and a website with her birth story.

http://www.wix.com/afourashley/Prayers-for-Preemies

Thank you Ashley! Love you!

Ava is HOME!!

2010-01-16T20:59:00.001-05:00

After a LONG 103 days, miss Ava is home! She was released on 12/28! She did have to come home on oxygen and an apnea monitor. I don't mind the monitor so much as it gives me a chance to sleep and not check on her every 2 seconds. But the oxygen is a PITA! Anytime she has a doctors appointment I have to have someone with me. It's too much to carry by myself (Ava in the carrier, oxygen tank, apnea monitor & diaper bag).

So far we've been to the pediatrician twice (routine visits) and the eye doctor. The pediatrician says she looks great for a 23 weeker. No visible signs of any major problems. At the last visit she weighed 5lbs 5oz. The eye doctor wants to see her every 3 weeks, which is normal for a preemie. So far so good on her eyes, no signs of ROP. We go the hematologist on the 20th to follow up on tests she had done when she was born. Since she was so early they just want to follow up. She goes to the pulmonologist on the 21st, so hopefully they will start weaning her off the oxygen.

She's doing pretty good at home, eating every 3-4 hours. After her last feeding at night, she usually goes for 5 hours before she wakes up! Great for Will and I! Other than that, things are what you expect with a newborn. Since we have to go by her adjusted age, today she is 8 days old. But technically today she is 4 months!!

So HAPPY BIRTHDAY babygirl!! We love you and are so VERY proud of you!!

Ava is Home!!!

2010-01-03T18:01:00.002-05:00

I know it's been a LONG time...I promise when I have more time I will come back and update!!!

Moved to Transition Pod

2009-12-01T20:16:00.000-05:00

November 29
Age: 10w4d
Gestational Age: 34w2d
Weight: 2lbs 13oz

Today they moved Ava to a transitional pod and lowered her oxygen settings to the lowest before either coming off or having to go home on it!! She's doing great!! Her new room is more private and has a window! This is the first that she's seen natural light. In this pod it seems that they really want you to focus on preparing for her to come home. It's great but overwhelming at the same time. Coming from a pod where they train you to take it day to day and even sometimes hour by hour, this is a huge adjustment. So Will and I are taking some classes in the next few days to help us prepare...Child Seat/CPR (required) and Baby Care. There are a few more classes that we want to take as well, Development and Infant Massage. Keep praying that we can bring Babygirl home for Christmas!!!

Started Bottle Feeding & Introduced Breast

2009-12-01T20:04:00.001-05:00

November 23
Age: 9w5d
Gestational Age: 33w3d
Weight: 2lbs 10.5 oz
Nurse Kate fed Ava from a bottle today! Out of 20cc, she took 5! We will slowly feed her more from the bottle since she needs to feed from it at every feeding to be able to go home.

November 24
Age: 9w6d
Gestational Age: 33w4d
Weight: 2lbs 11.5 oz
Today Ava took 15 of 20cc from Nurse Hermine! She would've taken it all but Hermine didn't want to put the multi-vitamin in the bottle b/c Ava would have been able to taste it. Some of the nurses also overheard the doctor telling the residents that "this is what a 23-weeker should look like" because she was fiesty and kicking! They also heard her say Ava "is the best 23-weeker she's had"!!!

November 25
Age: 10w
Gestational Age: 33w5d
Weight: 2lbs 11oz
We started nuzzling today and when she found the breast she went for it! Later we actually let her feed from the breast and she did pretty good! She would go and then stop and then go again! She did this 3 or 4 times! Today she "nippled" 4 times which is the max she's allowed right now.

Officially Off the Vent!!

2009-11-11T21:55:00.000-05:00

Age: 8 weeks
Gestational Age: 31w5d
Weight: 2lbs 2oz

So today I went to the hospital and I had a wonderful surprise waiting for me!!! They decided to remove Ava from the ventilator after 1 day on automode! Her main doctor is on vacation so another doctor actually made the decision. They placed her on a high-flow nasal cannula. When I looked at her in the incubator she was smushing her face into her bed! Finally freedom to move her head anyway she wants; she was enjoying it so much! I was so happy and had a smile from ear to ear! Finally the day I've been waiting for for 8 weeks now! Well this day and the day she can come home.

You can tell Ava was happy cause her oxygen levels were in the mid to upper 90's all day. The doctor that made the decision did tell me that we have to see how she does for a day...if she doesn't do good then she may have to put on CPAP or maybe even back to the ventilator again. But so far so good and hopefully this post doesn't jinx it!

We've Reached 2 lbs!! And update

2009-11-03T20:41:00.001-05:00

Age: 48 days
Gestational Age: 30w4d
Weight: 2lbs

Today we finally reached the 2lb mark! She's 918 grams...up 100 grams from 2 nights ago (maybe cause she got blood today).

Over the weekend we had a scare of NEC, but as of now the doctors are no longer worried about it. They did stop her feeds to be safe and should restart them late Wed or Thur. She also had to get more blood today. Since they were getting blood for labs so much over the weekend she was a little low.

Sunday night she decided to pull her ET tube out (breathing tube). The nurses decided to leave it out and see how she would handle it. She did good for about an hour but it was too much work for her. She had such a stressful weekend with the NEC scare, otherwise I think she would have done better. They are still weaning her from the vent and hope that they will get her off of it soon.

Other than that she's doing good!

Finally!!!

2009-10-13T19:18:00.001-04:00

Age: 27 days
Gestational Age: 27w4d
Weight: 1lb 6oz

I finally got to hold my daughter today!! What a great feeling! Thursday we can start Kangaroo Care, which is skin to skin! They originally said it would be a few weeks before we could start K-Care but I guess since she's doing good they decided we could start sooner!

She's also gained some weight! She's up to 1lb 6oz! They are decreasing her IV nutrition and increasing the amount of breastmilk she's getting. Soon she'll be on breastmilk only and they can take out the IV!!! They are giving her treatments to help her lungs; they said today they think they are working! Apparently it works for some but not all. They've talked about getting her off the ventilator, but I think that's going to take some time. They say it's like taking 2 steps forward and 1 step back.

I know it's hard to see her in the picture; they wanted to make sure to bundle her up so she stayed warm.

Friday she will be 1 month old! I can't believe it! I hope time keeps flying so I can bring her home!!

Surgery Update & Thank You's

2009-10-02T18:19:00.001-04:00

Age: 16 days
Gestational Age: 26w
Weight: 1lb 2.5oz

Little Miss Ava had the surgery to close her PDA today and it went as planned!! No complications and she handled it very well. The doctors said she will get worse before she gets better; meaning her oxygen saturation levels will still go up and down and hopefully after a few days of recovery she will be more stable (holding at 93% or higher on a low ventilator setting). It all depends on how well her lungs have matured. Her doctor was aggressive in turning down the settings on her ventilator soon after the surgery. She went from 38% oxygen down to 25%. Normal room air is 21%. This doesn't mean she will be off the ventilator soon; it’s just a good start and again depends on her lungs.

I also want to say thank you to everyone for their care and concern! All your prayers and kind words mean so much!! Also, thank you to John and Abby...friends of friends who donated blood for Ava. They came by the hospital yesterday and it was a pleasure meeting them and their 5 week old son! It's so nice to know that even complete strangers are willing to help out! It restores some faith that people are by nature kind hearted. I know there are so many people who I've never met that are willing to help Ava, so please, if someone you know has donated blood or even just said a prayer for her, pass along the information to this blog. I would like everyone who has played a part in her life to be able to keep up with her progress. And I know there is no way I could keep up with them all, so this is the next best thing!

Patent Ductus Arteriosus
The ductus arteriosus is a short blood vessel that connects the main blood vessel supplying the lungs to the aorta, the main blood vessel that leaves the heart. Its function in the unborn baby is to allow blood to bypass the lungs, because oxygen for the blood comes from the mother and not from breathing air. In full-term babies, the ductus arteriosus closes shortly after birth, but it frequently stays open in premature babies. When this happens, excess blood flows into the lungs and can cause breathing difficulties and sometimes heart failure. Patent ductus arteriosus (PDA) is often treated with a medication called indomethacin or ibuprofen, which is successful in closing the ductus arteriosus in more than 80% of infants requiring these medications. However, if medical therapy fails, then surgery may be required to close the ductus.

2 Weeks Old & She Opened Her Eyes!!

2009-09-30T17:40:00.001-04:00

Age: 2 weeks
Gestational Age: 25w5d
Weight:1lb 3oz

Today Ava is 2 weeks old! During the morning hands-on with her nurse, she opened her eyes!! She opened them again when I got there and the nurse was letting me help with the afternoon hands-on. Yay for the little milestones!

They were able to turn her oxygen back down to 33%. Surgery for the PDA will either be Friday or Monday...waiting for the surgeon to confirm the date. She was being a little diva today...didn't want anyone messing with her. Everytime we opened the bed her oxygen would drop. She was able to recover on her own, but it's still an uneasy feeling. She had to receive blood yesterday and today. They had to do a lot of tests (labs) yesterday so they were replacing what they took. Other than that, we're just waiting for the surgery.

PDA Update

2009-09-28T21:38:00.001-04:00

Age: 12 days
Gestational Age: 25w3d
Weight: 1lb

Well the PDA did not close. The doctor said they will do surgery at the end of this week or early next. They are waiting to make sure she doesn't have an infection. There is a chance it may close on it's on own, but it's not likely. Other than that, she had a pretty good day. They did have to turn up her oxygen to 43%, but that could be from the PDA being open.

Will update again when I know more about the surgery.

Ava's Birth Story

2009-09-26T10:47:00.000-04:00

Well as most of you know by now, I was diagnosed with severe Preeclampsia which turned into HELLP. When I went to the hospital they told me I would deliver within a week...well I made it a day and a half. The doctor and nurse woke me up at 1 AM on Wednesday (9/16) for an emergency c-section. I was shocked and scared as I knew it was too early to have Ava. But they insisted that I was in danger if I didn't deliver. So at 2:19 AM Ava Rene' was born (23w5d). She weighed 445 g and measured only 10.75 in. She is tiny but she is a fighter! It's been 10 days and so far she has remained strong!

Will has been great...he drops off breastmilk every morning on his way to work and then goes back after work to sit and talk to her. I go to the hospital and sit with her in the morning and leave late afternoon. We have a routine that seems to be working so far!

I will post updates on her progress.

As of yesterday...9/26
Weight: 451 g (was up to 470, may have decreased due to stopped feedings)
Length: 11 in
Oxygen Level: 28-30%
PDA: open, ibuprofen administred (Thurs, Fri & Sat) - results Monday
Brain Bleed: was a level 1, but improving
Apena: receiving caffine
Anemia: receiving blood transfusions a few times a week
RDS: surfactant
Infection: culture on 9/22 was negative...another culture on 9/26
Feeding: they stopped the breastmilk while she is getting ibuprofen

She Finally Kicked Me!

2009-09-02T14:25:00.002-04:00

So for the last couple of weeks I've thought I've felt little Ava moving but wasn't sure. It just felt like she was taking her little finger and running it across my belly right under my belly button. Well last night after dinner, I had some ice cream and laid on the couch with my hands on my belly. And sure enough I swear I felt her kick!! It was like I could feel her little foot and toes in the palm of my hand!! It only lasted about a minute. Will tried to feel her but he couldn't. Now when people ask if I've felt her I can finally say "yes" without the "at least I think it was her" after it!! I felt her today too...just a little while ago she kicked me again!

It's a GIRL!!!

2009-08-17T18:43:00.004-04:00

Here is a quick (3 sec) video of our little girl!!! Enjoy!

2009-08-11T17:37:00.003-04:00

Sorry it's been so long...here is what's new.

Since the last post we had a NT Scan done to check for genetic defects. The test consisted of another ultrasound and 2 blood tests. The ultrasound came back normal and we're waiting on the results from the blood work. I do have an updated ultrasound picture, however my scanner isn't working so I can't upload it.

We go Monday (8/17) for the anatomy scan and gender determination ultrasound!!! I'm so excited to finally be able to name this little one and buy something gender specific!!!

The picture I uploaded today is from Friday (8/7)...I'm 18 weeks. Still no obvious bump, just a little one. I'm still in the "is she fat or pregnant phase". =0)

9 Weeks/2nd Sonogram

2009-06-09T11:00:00.002-04:00

Hey everyone! Sorry it's been a while but here is the latest pic of our little Winny Bean! He/She is 9 weeks and 4 days in this pic. Will and I got to hear the heartbeat this time, 176 bpm! They said that's normal for 9 weeks and it will level out between 130-170 soon. Will's face lit up when we heard it! It was so cute!

I started going to a new doctor b/c Partners in Women's Healthcare SUCK!! Sorry just had to put that out there. I'm now seeing Dr. Stern who seems to be pretty nice. Very straighforward but overall actually seems like he cares. I'm not as impressed with their sonograms, but there is no way I could keep going to the other doctors.

Still no morning sickness *knock on wood*! I get full really quick so I need to learn not to over eat. Other than that and being tired, all is good!

6 Weeks?? Really??

2009-05-19T19:19:00.004-04:00

Well we went to the doctors on Monday for our first sonogram. Now they say I'm only 6 weeks! I found it hard to believe, but she measured little bean, and the size indicates only 6 weeks. Now my due date is Jan 9, 10. At the end of December I'll be walking alot trying to get little bean into the world before the end of the year! Not for tax reasons, although that would be nice too, but for insurance purposes. Too long to explain, just know I will be walking my butt off the last 2 weeks of December!

"Where's the 'Not'"

2009-05-13T16:25:00.002-04:00

For the past couple of weeks I've felt tired and sluggish. I thought I needed to get back to the gym since it has been a while. I knew there was a possibility of being pregnant, but really didn't believe that was it. None the less, I decided I would test on Mother's Day since I thought that would make a great Mother's Day present.

Sunday 5.10.09...Will woke up early to go see his aunt Susan. I decided to stay home that way if the test was negative, I could have some time to myself to deal with it. I finally rolled out of bed around 8:30am. I took the test and before the results came back, I called mom to wish her a happy mothers day. I figured if I called her before the results, I couldn't tell her! After hanging up with mom, I walked back to the bathroom and read the results. Now for those who don't know, most tests give you 1-2 lines as an indicator. Well this one was one of those fancy digital ones, it was free with 2 line tests, that actually says "Pregnant" or "Not Pregnant". So when I read the stick...it said "Pregnant". My first thought was "where's the not?!" Then I got so excited, I actually danced around for about 2 seconds and then immediately called my best friend Rhonda.

Rhonda of course was excited and mentioned taking another one just to convince Will. So I drove to Wal-Greens, bought another pack of 2 and also picked up a recordable card for mom. As we know, the second test was positive as well!

When Will got home from visiting his aunt, I showed him the results and he gave me a high-five and said "good job, you did it"! Typical Will response! After that, he called his aunt to tell her and then some other family. Most of his family lives in Philly so phone calls had to do.

For my mom, I decided I wanted to tell her in person. So with the recordable card in hand, Will and I recorded the message, "Happy Mother's Day, Grandma!" And I was still asking "where's the not?"

We go for an ultra-sound on Monday (5.18) to confirm how far along I am. Right now they think about 7 weeks, but we will know for sure on Monday. We also get to hear the baby's heartbeat!!

On a side note, for the name, Baby Winny Bean...the girls at work call me Winny (for my last name), and they say there is a bean growing inside of me, so Baby Winny Bean, kind of stuck. Strange, I know, but you gotta love Amber, Falon, Cathi and Lindsey!