Easter present

Just found out that Avery has reached the 4 pound mark! She was weighed on Easter night and is 4 pounds and 1/2 ounce. That's my girl!

Laser Eye Surgery

So, now that Avery's laser eye surgery is over I can calmly talk (write) about it. I was 100% freaked out about it before it happened, as any parent would be. Here's the latest info on Avery:

Since my last post, quite a bit has happened. Avery did get moved to the "grower's nursery" at Jersey Shore. This nursery is for babies who are stable and not as critical. She graduated to the new nursery on Wednesday afternoon when two new admissions came into the NICU and bumped her out. And she reached the 3 pound mark on Monday, March 22nd!

On Friday, March 26th, she had a eye test to look for ROP (retinopathy of prematurity) which is a very common disease for preemies of her birth weight. I found this definition of ROP which explains it better than I could : Retinopathy of prematurity occurs primarily, but not exclusively, in premature infants. It refers to damage to the blood vessels of the developing eye.The factors that cause ROP and determine the outcome are not fully known, but prematurity and the degree of retinal immaturity at birth are major factors. Hyperoxia (high oxygen levels) is also a major factor, but other problems, including respiratory distress, heart disease, infection and anemia may be contributory factors. In general, the lower the birth weight and the more unhealthy the infant, the greater the risk of ROP. It is now known that oxygen alone is neither sufficient nor necessary to produce ROP, and no safe level of oxygen has yet been determined. So, the eye exam was done on Friday and the eye dr. found that she had made good progress since her previous eye exam and he didn't think that she needed the surgery, but he planned to examine her again on Sunday afternoon since he was beginning his vacation on Monday. And guess what??? Sunday's exam showed that Avery was on the borderline for needing the surgery. He felt that it was better to have her examined by a dr. at Wills Eye Institute and let them determine if she needed the surgery. So begins the craziness...Wills Eye Institute does their pediatric laser eye surgeries out of Jefferson University Hospital in Philadelphia. Loooooong story short - Avery was transported via ambulance to Philadelphia late Monday night (in a horrible storm, of course) and arrived safe and sound very early Tuesday a.m. I arrived in Philadelphia with my mother and Brielle around 9:30 on Tuesday morning. I found Avery re-inutbated for the surgery and she was NOT happy about it. The actual surgery took place around 5:00 p.m. and went great. The dr. who performed the laser surgery was extremely happy with the results and expects a great outcome for Avery. The whole procedure took about 45 minutes and she was sedated the whole time. I saw her afterwards and her eyes were puffy (looked like she got in a fight), but other than that she was perfect. And today she was extubated and was doing wonderfully. They also weighed her last night and she is up to 3 pounds 12 ounces! Only 4 more ounces until 4 pounds - I can't believe it! She has to remain in the NICU at Jefferson until the eye dr. from Wills Eye Institute can re-check her eyes and determine if the surgery was successful. Some babies need additional surgeries to correct the problem. Avery's dr. seemed very confident that she would not need additional surgery, so keep your fingers crossed. I will be making the drive out to Philadelphia every day until she is transferred back to Jersey Shore or discharged. Everyone we have encountered at Jefferson has been great, but we miss our Jersey Shore NICU family. Avery is a "Jersey girl"....she wants to go home ; )

The past few days have been a blur and I could not have gotten through all of this without my family. My mom took days off work to be with me and her grand-daughters. She drove us all out there and stayed with Brielle while I attended to Avery in the NICU. She cried with me when we were so nervous before the surgery began and cried again with me in relief when the surgery was over. And Brielle was so sweet about sitting in the family waiting room all day. She kept telling me "I want to be here for my little sister, Mom." She gave me hugs and kisses all day and snuggled in the bed with me that night. I'm so glad she came with me, it was definitely the right thing to do for her and for me as well.

The attached picture is of me and Avery the day after her surgery. In this pic she is wearing the CPAP, which she hates and fusses about, but she needs to have it. We are hoping that she can go without it beginning tonight. I will keep you updated!

March 21, 2010

It was a quiet weekend for Avery on this first weekend of Spring.

She has made some great progress since my last blog post. She was taken off the ventilator last weekend and placed on CPAP. She did not like the CPAP! She kept trying to rip it off her face and was very fussy with it. I can't say I blame her. It doesn't look so comfortable (as you can see in the video of her from last weekend), but I know she needs it. When I visited her on Monday she was still on the CPAP and doing well, but when I walked in the NICU on Tuesday morning I almost fell over...firstly, she was wearing clothes and secondly, she was no longer on the CPAP, but just a nasal cannula. For those of you who don't know (why would you?) - the CPAP provides pressurized oxygen to her lungs and the nasal cannula is simply oxygen with very little pressure. I had never seen her dressed or had such a wonderful view of her sweet little face. The doctors informed me that she had been doing so well on the CPAP that they decided to try her on just the nasal cannula and she was doing wonderfully. As for the clothes, now that she is extubated and not on the CPAP we don't really do the kangaroo care, so she doesn't have to be naked on my chest. Now I can just cradle her in my arms and we can get a good look at eachother : ) It is so great to get to really snuggle with her and enjoy that time together. You know that the next day I brought in a giant bin of preemie clothes for her! All the cute little outfits that Brielle used to wear (good thing I saved them, huh?).

She did great with the nasal cannula all week long and they also changed they way she is being fed. Now she is being fed every 3 hours! This is to get her ready for bottle feeding, which is supposed to happen later this week (you have no idea how excited I am to give my little girl a ba-ba). So far she has tolerated the every 3 hour feeding extremely well. In fact, she was weighed today (just for fun because "official" weigh ins are on Monday and Thursday) and she weighed 2 pounds 15.3 ounces. You can't get much closer to 3 pounds can you? We're hoping that tomorrow or Tuesday is the "official" 3 pound day - keep your fingers crossed. And another good sign is that she is going crazy for her pacifier. She loves that thing which is great because it shows that she should do well with a bottle. We'll see....

Attached is a photo of me smooching Avery. I love to kiss her sweet little cheeks. And I think she likes it too : ) I have faith that she knows that her mommy is there every single day for her and that I would move mountains for her (and her big sister) if I had to. I don't need justification from my girls or from outside sources to know this is true. There is nothing more important to me in this world right now than my girls and everyone who knows me (and even some who don't) know this. My mom always tells me "the cream rises to the top" and my girls and I are very "creamy" right now! LOL! Thanks for everyone's support and don't forget to keep those prayers for Avery coming. She still has a lot of growing to do...

Avery - March 15, 2010

March 15, 2010

What a great weekend for Avery! I visited her on Saturday and spoke to her doctor who informed me that they would be starting her on a short course of steroids to reduce the inflamation in her lungs from having the ventilator tube down there for so long. He also told me that they planned to extubate her the next day! I was so relieved to find out that this short course of steroids had no bad side effects. What a relief! Brielle also got a great view of her on Saturday through the window. Avery was being her usual crazy girl self and pulling off her leads (one ended up on her head and Brielle thought that was hysterical) and squirming around. Brielle was a very happy big sister after our visit : )

On Sunday a.m. I called the NICU and found out that Avery had been extubated at approximately 9:00 a.m. and was doing really well. She was on CPAP (tubes that go into her nose and provide her with pressurized oxygen) and was on a very low setting. I couldn't wait to go see her! Sunday also happened to be the day of my baby shower. The shower was amazing and I enjoyed spending the day with all of my family and friends, but Avery was on my mind the whole time. I called a couple of times to check on her and received great reports. The nurse told me that she even heard her little cry! I headed up to the hospital around 5:30 and spent some time with her. She looked very peaceful and her vitals were excellent. She wasn't struggling to breathe at all. And I got to hear her little voice! Although, the voice wasn't so little after all. She definitely knew how to use those lungs!

Today is Monday, and she is still doing great. I held her for a while today and she was going crazy for her pacifier. Still focused on getting her to gain more weight, so her feeding schedule has been changed. She was on a continuous feed of 10 hours on/2 hours off, but they are moving her down to 6 hours on/3 hours off. She is still getting the same amount of food, but in a different way. This is to get her ready to bottle feed, which may happen as early as next week! I can't wait for that day! I took video of her today which I will post to the blog. This pic is also from today, mommy and baby snuggling. Enjoy! And thanks for reading....

March 7, 2010

I spent my afternoon with Miss Avery today. She is doing well. She gave the nurses a run for their money this a.m. when she yanked out her own ventilator tube! She extubated herself! She is a wild woman. And she's strong! The other day I watched her move her head from one side to the other. She bent the ventilator tube in the process! Crazy girl. She had to be re-intubated today, but other than that she is doing good. She is going through the process of being weaned off the ventilator (again) and seems to be tolerating it well this time. She's back on her caffiene again...

She is up to 2 pounds 10 ounces and is on full feeds. They tried to add some lipids (fats) to her formula to help her gain weight more quickly, but it made her have diarrhea, so they stopped it. The main goals at this point are to get her to gain weight and to get her weaned off the ventilator. Hopefully she can make some progress in both of these areas this week. I will keep you updated! I'm also going to try to get some good pics of her this week. She is so cute - she's getting baby fat (can you believe it?) on her cheeks and her thighs! So sweet!

February 26, 2010

Here is a pic of my sweet girl blowing bubbles when she came off the ventilator and was put on CPAP. The bow on her head is courtesy of her primary nurse!

February 27, 2010

What a week! I'm am mentally and physically drained from a week filled with major ups and major downs. Let me explain....

On Sunday I visited Avery and noticed that her heart rate was increased compared to what it normally was. I asked the nurse about it and she explained that Avery's temperature was a little high and that could increase her heart rate. They were trying to bring her temp down and they were confident that her heart rate would also come down. Well, needless to say, I got a phone call from the NICU doctor at 11:00 p.m. on Sunday night telling me that Avery's heart rate would not go down. They had tried everything. The dr. had a few ideas of what the problem might be but they wouldn't be able to confirm anything until Monday morning when additional tests could be done. The dr. assured me that they would keep a close eye on her overnight and make some decisions in the a.m. Around 7:45 a.m. I called the NICU and spoke to Avery's primary nurse who informed me that Avery was not doing so well. Her heart rate was in the 220's (it is normally in the 140's and 150's) and she was not tolerating being touched at all. We knew that her little body couldn't handle such a high heart rate for very long. I put Brielle on the school bus and raced up to the hospital to see Avery and find out what was going on. After a very agonizing morning of tests and lots of waiting and worrying they finally figured out that Avery was severely dehydrated. Lots of little changes to her feeding and some additional medication she was getting caused her to have diahrrea and that resulted in the dehydration. Her body is so small that any changes have a significant effect on her. I stayed with her all day and watched her heart rate slowly go back down and waited for blood work to let us know that her levels were getting back to normal. It was a VERY scary day and it made me realize (even more than I already did) that her life is so fragile.

She has gotten better every day since then and is finally back on track. Which leads me to today (the major "up" of the week)....Avery was taken off the ventilator!!! Finally! They made the decision this a.m. to extubate her. So far so good. She is on CPAP and is doing well. The doctors and nurses keep reminding me that she may have to be reintubated at some point, but I'm glad that they gave her a chance to get off the ventilator and breathe on her own. I know she can do it! Keep your fingers crossed!

We had the chance to do some "kangaroo care" a couple of times this week and we both enjoyed it. I spoke to her doctor a little while ago and he told me that at this point the major goal with Avery is to get her to gain more weight (she is currently at 2 pounds 3 ounces). She is healthy and is progressing well. I will post some pics of her without the ventilator tube in her mouth later in the week. Keep her in your thoughts!!!

February 20, 2010

Spent most of the day with my little sweetie. We were able to start kangaroo care this week. It's been so great (for both of us) and Avery does so well with it. As you can see from the picture, the nurse takes her out of the isolette and places her right in my shirt and buttons it up. Then they place warm blankets over her and put a hat on her head to keep her nice and toasty. Avery usually spends the first few minutes wiggling around and getting cozy, but once she gets settled in she falls fast asleep. We snuggled for over two hours today and she tolerated it very well.

We also got some great news about Avery being weaned off the ventilator. They have been able to drop her settings so low the past few days that they are now preparing her to be extubated (removing the ventilator tube from her)! They gave her a big dose of caffeine today to get her ready and will give her smaller doses going forward. The caffeine helps her remember to breathe in case she forgets. The nurses and doctors keep reminding me that she may have to be re-intubated after a couple of days if she can't handle breathing on her own, but they won't know until they try. Knowing my little girl and seeing how often she tries to pull that tube out of her mouth I think she's ready!

Weigh in day is Monday and we're hoping for a few ounce gain. Her feed has been increased and so have the amount of calories she receives. I will keep everyone updated! Keep those prayers for Avery coming...

February 17, 2010

2 POUNDS! SHE REACHED THE 2 POUND MARK TODAY! GO AVERY GO!

February 15, 2010

What an AMAZING day! I got to hold Avery for the first time today! And today was "weigh-in" day and she gained another 2 ounces, bringing her up to 1 pound 14 ounces. She gets weighed again on Thursday and we're hoping to be able to have a "2 pound party"! Keep your fingers crossed and I will keep you updated. The doctor did not have much to update me about today. The amount of calories in her feed was increased yesterday and she seems to be doing good with it so far. Her belly was a little big again today, but we're hoping she just has to make some poop and it will go down. More praying for poop : ) And of course, they are still trying to wean her off the ventilator very slowly, but she is still so small and needs the help. I know she'll tell us when she's ready to come off the ventilator...just not quite yet.

I was so happy to find out that I would get to hold her today. Her nurse, Penny, and I gave her a sponge bath (she loved it) and then Penny wrapped her up in warm blankets and placed her in my arms. Of course I cried. But little Avery did so well. She was out of the isolette for about 40 minutes and she looked so happy to be out! She had her eyes wide open for a lot of the time and was checking us out. We talked to her and snuggled with her. It was wonderful. My Valentine's Day present - one day late : )

Friday, February 12, 2010

February 8, 2010

Another good day for Avery! She gained another 2 ounces, bringing her total weight to 1 lb. 8 oz! And she is doing great with the feeding. She has tolerated it well and her feeds have increased every day for the past 4 days. She is being closely monitored right now for an infection that was detected in her body. The doctors aren't sure what is causing it, but they are planning on putting her on antibiotics as a preventative measure. We are hoping to have some more answers about the infection tomorrow after an x-ray is taken and test results are returned. She is still working on being weaned off the ventilator. Settings are turned down a little bit each day as long as she is tolerating it. The nurses keep telling me "she is the boss. she will let us know when she is ready to come off the ventilator." They're right!

I got to hold her briefly on Sunday afternoon. The nurse lifted up the top of the isolette and allowed me to pick her up and hold her in my hands. You can see in the picture above. It was a great moment and it made me want to hold her close to me and kiss her little cheeks, but I know I can't right now. Like I've said before, our time to cuddle will come soon, I'm sure. I keep telling myself that she should still be in my belly and if she was I wouldn't be able to see her or touch her or hold her yet. I can be patient.

Big sister Brielle is VERY excited to hold her little sister too! We are planning on visiting the hospital together this weekend for a Valentine's Day visit to Baby Avery. Brielle is not allowed in the NICU, but she can see her through the NICU windows. We are both looking forward to it. Brielle has already made some Valentine's Day decorations for her little sister's isolette. It's so sweet : )

Avery is having a good day today : ) Some good news to share:

- She gained another ounce. So now she is up to 1 pound 6 ounces!
- She started "feeding" again today through her feeding tube. It's been a full 24 hours and so far the results are good. She didn't spit up any of the food and she made a nice poop this morning. Both are good signs that she is digesting well. Hopefully tomorrow they will be able to up her feeding amounts and that will help her gain more weight more quickly.
- They are still slowly weaning her off of her ventilator. It's been a slow process, but she is doing well with it. As she gains more weight it will be easier for them to wean her.

A lot of people have been asking about "kangarooing" and how it went. Unfortunately, I wasn't able to do it yet. The day that we were going to try was the day that she had to have her ventilator tube changed and the nurses and doctors felt it was too much to do in one day. The doctor is also reccomending that we wait until she is off the ventilator to start kangarooing. I was disappointed, but I agree with them and I understand. Our time to snuggle will come soon enough. I'm really looking forward to it and when the time comes I will certainly update all of you on how it went.

Thank you to everyone who signed up to be part of Team BrAvery as we raise money and walk for March of Dimes in honor of Brielle and Avery. There is so much love and support out there for me and my girls that it makes me cry every time I think about it. I have the best family and friends that a girl could ask for and I don't know how I would've made it through the most difficult time in my life without them. Something else happened today that made me question certain people and their values and priorities during this scary time in our lives. I can't help but be totally consumed by my daughter and her condition and it makes me wonder how other people so close to her can be concerned with silly and un-important issues. My daughters are the most important things in my life right now and I wish it was that way for everyone, but unfortunately for them it isn't...

Join Team BrAvery as we participate in the March of Dimes Walk in Seaside Heights on Saturday, April 25th.

Click on this link to join today! http://www.marchforbabies.org/team/t1372268

Thank you!

Sometimes the tiniest stars shine brightest in our lives...

February 1, 2010

I spent most of the morning in the NICU with Avery today. We got lots of good news regarding her progress today. First, she gained another ounce so she is up to 1 lb. 5 oz. Second, the results of the gastric study came back good. The proof was in her diaper! The nurse told me that I could change her and when I opened up her diaper I got a big surprise! So, the doctor is planning to start feeding in the next one or two days. Lastly, Avery and I will be "kangarooing" tomorrow. This basically means that we will be doing skin to skin contact. I will sit in a comfy chair and they will place a naked (except for the diaper) Avery on my bare chest right near my heart. We'll sit together for quite a while. Studies show that "kangarooing" is extremely beneficial for both mom and baby. I can't wait! I'm so excited to feel her wiggly little body on mine. As long as her vitals are good (they have been excellent so far) we should be able to do this quite often.

And that's pretty much all for today. It was another good day for Miss Avery. And for me : )

This pic was taken on Sunday afternoon while she was all snuggled up on her belly. She is defintely going to be a little blondie. Look at those eyebrows!

Pic of Avery on 1/28/2010

January 28, 2009

Just wanted to give a quick update about Avery's progress the past few days...talked to the nurse this a.m. who told me that Avery was weighed today and she is up to 1 lb. 4 oz! That was great news to hear. She had a brain scan done on Wednesday night which came back negative for bleeding on the brain, which is very common for preemies. This brain scan will be done every Wednesday night going forward. Her belly is still a little bit distended, but it has gone down in the past few days. They are waiting for her to pass some stool and hoping that her belly will go down after that. My family is "praying for poop" at this point. If her belly doesn't go down by Monday they will do a test which will show us if her digestive and gastric systems are working properly. If all goes well she will be able to start officially "feeding" in the next couple of weeks. Right now she is just getting nutrients, it's everything she needs, but to see her feeding would be wonderful. They also did another echo on her heart to check the murmur that she when she was born. The murmur is gone and her heart is functioning perfectly.

I wish I had my camera when I visited her last night because she looked so great. She wasn't under the bilirubin lights (her jaundice levels have gone down) so she didn't have those silly glasses on and she was warm so she wasn't wearing a hat. I got to see her open her eyes for the first time. She kept taking little peeks at me and my mother, who was teasing her and saying "come on Avery make poopy, come on little girl." I think Avery just wanted to see who was bugging her! And her primary nurse, Penny, took such great care of her yesterday. She put some lotion on her skin, which is soooo delicate, because the stickiness of the wires she has attached to her have been leaving marks on her skin. The lotion worked great, her skin looked healthy and pink. And she really is amazing to see. I wish I could take all of you who care for her so much to the NICU with me to meet her. She is perfect, just tiny, but absolutely perfect. She even has some blonde peach fuzz on her head. We are convinced that she is going to look just like her big sister!

I want to personally thank all of my friends and family who donated to the March of Dimes in Avery's name. We have raised almost $2,000 for preemies thanks to all of you. And thank you most of all to Brian Dowd who started the site and really got the word out. Brian, I can never thank you enough for doing that. It means so much. And we have plans in the works to create a March of Dimes team to participate in the walk in Seaside in April. I will definitely have more information coming soon if you are interested in walking with us in Brielle and Avery's honor. We will be "Team BrAvery". Get it????

I also wanted to update everyone on my health....I am doing very well. I saw my doctor yesterday who took out all of my staples (all 30 of them) and checked my incision. I will be going for some blood work in a few weeks to find out why this keeps happening to me when I am pregnant. The dr. seems to think it is a problem with the coagulation of my blood. We'll soon find out. I am feeling better every day and really looking forward to getting back to normal. I can't wait to be able to drive again (I have to wait 2 weeks from the date of the c-section) and to be able to do all the things around the house I need to do. I'm planning on joining the gym and getting my strength back so that I will be ready for Avery when she comes home. Right now my focus is on my daughters and their well being. Unfortunately, there are some people in my life whose priorities are not matching up with mine and I have to let them go. Their loss, not mine.

Welcome!

I'm creating this blog as a way to update all of my friends and family on Avery's progress in the NICU as she grows. Here is Avery's story so far...

Avery Carmella Eck'Art was born on January 19, 2010 at 7:28 a.m. She weighed 1 lb. 1 oz. at birth. She was born prematurely at 26 weeks due to my severe case of pre-ecclampsia (pregnancy induced high blood pressure).

On Monday, January 18th, I was at home and not feeling well. I had a bad stomach ache and couldn't keep any food down. I could also feel my heart racing. I knew immediately that these were the signs of pre-ecclampsia because I had the same symptoms right before I gave birth to Brielle six years ago (Brielle was also born early at 30 weeks). I called Luke and asked him to stop at the store and pick up a blood pressure cuff and some Tums for me. We tested my blood pressure which showed up as 189/115. We knew we had to head directly to the ER. We got to the ER at Southern Ocean County Hospital and they took my blood pressure again and again it was through the roof. They brought me directly to Labor and Delivery and continued to monitor my blood pressure along with doing blood work, setting up an IV, and measuring my urine output. My parents were called and sat with me through the night. The on call doctor called my high risk doctor who told me that I had to head up to Jersey Shore University Medical Center immediately. I was taken by ambulance to Jersey Shore. I arrived there shortly after 4:30 a.m.

After more monitoring and a meeting with Dr. Fernandez, my high risk doctor, the decision was made that Avery had to be delivered via c-section immediately. She was not receiving the nutrients that she needed from me and I was in risk of having a stroke due to my high blood pressure. My mom headed into the OR with me and Avery was delivered at 7:28 a.m. She even let out a tiny yell as she was being born. She was extremely tiny, but holding her own. I headed to the recovery room and Avery headed to the NICU where she has been ever since, being cared for 24/7 by the best doctors and nurses in the area.

I stayed in the hospital for 4 days and visited with Avery every day. She has her ups and downs, but mostly good news so far. We are being "optimistic, but realistic" regarding her situation. Obviously she is still considered "critical", but she is growing more and more stable by the day. We had a few small scares regarding a heart murmur (which has been rectified with medication), kidney function (low urine output was recorded for a day, but has since improved), and multiple blood transfusions already. Good news is that she is tolerating all of this quite well. She is a strong little girl who has a long road ahead of her, but with all the prayers and thoughts and love from her friends and family we are confident that she will gain strength day by day and grow up to be a strong, beautiful girl just like her big sister.

My plan is to update this blog every few days to let everyone know about her progress and to post some pics as I take them so you can see her grow. Thank you for reading and thank you for your support so far...