Home Sweet Home

She sleeps...during the day :)

Not sure exactly what happened with my dates. You'll have to scroll down to read about Audrey's first week at home. It is below "Eviction Notice Posted". Lots of updates to come...so much happening at our zoo, oops...I mean home.

Eviction Notice Posted!

Audrey received her eviction notice today! She has to be out no later than Wednesday, August 27. She has been such a big girl over the past 48 hours. Audrey has kept her temperature right at 36.5 Celsius and has been able to remain in her open crib. She is not only accepting her full feedings, but gladly takes more. Her weight gains continue to be steady, hence the willingness to eat more than necessary. Last but not least, she

has finally refrained from demanding oxygen. The oxygen was a big hurdle for her and the only potential obstacle in coming home. Tomorrow they will do blood tests to check her red blood cell count and to test how fast her body produces red blood cells. Since this determines the hemoglobin and oxygen in her body. As long as those numbers are high enough she should be sleeping in the comfort of her own pack 'n play tomorrow evening, right beside my bed.

I did not; however, say that I would be sleeping. Where Kevin wants her to be off everything before she leaves the NICU, I would like for her to continue on her monitor at least for the first couple of weeks. I understand his reasoning, she shouldn't come home if she needs to be on oxygen and monitors. My thoughts, bring her home on a monitor. The monitor will be able to wake us up in the middle of the night if her oxygen levels plummet. I really fear that I will not be able to sleep without a monitor. If I would happen to fall asleep I envision waking up in a panic that I actually drifted off. All of the moms reading this know exactly what I mean, now multiply that times 10. I cannot imagine anything happening to Audrey and I'll do everything in my power to keep her safe.

So, I ask you once again for your prayers this evening. Please pray that Audrey's blood work shows that she is ready to go home, pray for our safety on the road, and pray that Audrey will continue to get stronger in our care. Thank you so much, the power of prayer is amazing! I know that God doesn't answer all of our prayers (boy, do I ever), but I also know that He can. He doesn't make mistakes, even when we don't understand why our prayers may not be answered.

Hopefully my next post will be about our first days with Audrey home. Thank you for being a part of our story. Each of your prayers has made it what it is.

Much Love,

Jenn

Home Sweet Home

Well, we made it! Exiting the doors at Aultman's NICU marked the end to another chapter in this emotional story. Audrey's 44 day home in the NICU ended. We begin the new chapter with Audrey at home. I know, I know...where are the pictures? I will upload some as soon as I figure out why my computer is not reading my SD card.

Let me first start by saying Audrey's first week has gone well. I was so leary about her coming home without a monitor. I surely thought she should be on one just in case something would go wrong. Well, God must have known how concerned I was and provided Audrey with a built-in model. I'm not kidding one bit when I say, my beautiful little Audrey grunted all night long. Seriously, all night. At 2 am Kevin finally said, are you sleeping? Surely not. Who could? There was no doubt she was breathing. Funny thing was while we were tossing and turning, she was sound asleep through all her grunting. Needless to say it was a long night. By the end of it, Kevin was in Dawson's room, Dawson was in bed with me, and Audrey was sound asleep just as Lane was waking up. Doesn't leave much sleep for Mom in there anywhere.

The boys are just in awe over Audrey. Dawson says she's his girlfriend, such innocense. Lane just looks at her and smiles as long as she's in her pack n play, carseat or bassinette. If Audrey is in Mommy's arms, he's dying to be held and no longer interested in the "intruder." Dawson loves Audrey so much, he constantly wants to hold her or touch her. I have to share a funny Dawson story with you. On the second night that Audrey was home with us the boys sat down to eat dinner and I finished nursing. Audrey was quite fussy. OK, she was wailing. She doesn't have the entire nursing thing down yet and gets quite impatient. So, I hear Dawson ask Kevin "Daddy, do we get to keep Audrey forever?" Smiling, and surely proud of the sweetness oozing out of our son, Kevin said "yep, we get to keep her forever". Dawson didn't skip a beat and replied "What are we going to do about the screaming?" I don't know that we stopped giggling soon enough to answer. That's Dawson, so sweet and innocent, yet so beyond his years.

Audrey's homecoming will be a true adjustment for everyone. I really no longer know what is normal and the boys don't either. We will completely have to redefine that in our household. I know that I said in a previous post that my boys wouldn't know what to do when I come home and Audrey is out of the hospital. I knew they would be bored and not nearly as spoiled as they have been the past 7 weeks. I learned how truly bored they would be with me when Dawson asked if he could go watch Nina paint. I explained to him that Nina wasn't painting a picture she was painting a room in a rental. He said "I know, can I pleaaaase go with her?" He did. I imagined they would return in a few minutes after he had his fill of just how boring that could be. Well, to my surprise Dawson returned home 2 hours later. So there you have it, my son would rather watch paint dry than spend a day home with mom.

It has been an amazing road traveled over the past 8 months. The TTTS is over. My pregnancy is over. Olivia's service is over. The rush of trips to and from the NICU is over. Audrey is home. It is only now when everything has slowed down that true healing can begin. I again thank you for your continued prayers for our family. They are much needed and much appreciated.

This post has been quite long as I've been working on it bit by bit. I must say sleep deprivation, a preschooler, a toddler, and a newborn don't allow much time for blog writing. I really wanted to post this about a week ago to let you know we have survived and it just didn't happen. So, here it is, my first post exactly a week and a half after we brought Audrey Olivia, our little miracle home. It's now 11:15 pm and I hear the precious sound of Audrey's sweet cry. Motherhood is calling.

Love,

Jenn

Eviction Notice?

Did someone say "eviction notice?"

Time has gotten away from me again. It's hard to believe that as of today Audrey has been in the NICU at Aultman Hospital for 38 days. That makes her just over 5 weeks old and, according to the doctors, 36 weeks and 2 days adjusted age.

My goal was to keep up with this blog every couple of days. HA, that's funny. Obviously, I've never had a baby in the NICU and two boys at home desperately needing their mommy's attention when she returns. The combination of these things leaves very little time for getting on the computer for updates.

So, to keep you up to date...Audrey's stay in her big girl crib was short-lived as she returned to her isolette just four days later. Ahh, the things we take for granted that our bodies do naturally and little Audrey's has to work very hard for like breathing, keeping warm, eating, and even staying awake to eat. Because Audrey has to do all of these things at once, something had to give and it was her temperature and weight gain. Audrey was burning too many calories doing those things we take for granted and began losing those precious ounces that took her so long to gain. When Audrey started to lose weight she had to go back into her isolette. Personally, I think she just enjoyed being cozy, warm and cradled by the blanket "nest."




Along with returning to her crib, she has returned to her "nose" after several attempts to abandon it. She just can't seem to kick her addiction to her nasal canula. Early Monday morning (12:30 am) Audrey was taken off her oxygen, she lasted for 30 hours! She was put back on oxygen after dipping down during feedings and not recovering afterwards. Losing oxygen while you eat is not that uncommon, adults often do it as well. The problem comes after she has finished her feedings and still remains in the 60%-70% blood oxygen level. The neonatalogist needs to see Audrey in the upper 80%-90% levels.

Steroids were mentioned as a way to kick this oxygen addiction. It seems that everything that is used in the NICU to help babies also has it's drawbacks. Steroids can cause delays in growth, both physical and neurological. Although this is usually seen in large doses of steroids we feel that Audrey is on a small enough amount of oxygen at the time that the risks outweigh the benefits. We will hold off on accepting the steroids as treatment at least for awhile longer.




So, although there is talk of an eviction notice, the date has not been confirmed. The nurses are all making bets as to what day Audrey will get to see her new home. We just have to keep hoping for the following things:

• All feeds by breast or bottle for 24 hours. No feeding tube!



• Open crib for 24 hours. No more isolette.
  
  
• Episode free for 24 hours. No brady's, destat's, etc.



• Continuing to gain weight while doing all the above.
  

As you can see "off oxygen" did not make the list. This takes me back to our first meeting with the NICU Nurse Practitioner while in the anti-pardom section of the hospital. We met with her since we were only 30 weeks along after being admitted to hospital bedrest. She told us all about the NICU and mentioned that some babies go home on monitors and oxygen. When the NP left our room Kevin and I looked at each other right away and commented "there's no way our baby is going home on a monitor!" Funny, huh. Now there is talk of her coming home on both. Although it is scary, I've become quite comfortable and educated with both of these necessities. If the neonatalogists believe it is safe for Audrey to come home on oxygen and monitors we will gladly bring her home. I didn't say, however, that we would sleep. So, I'll keep you posted on that eviction notice.

Again, thank you for your love and support. I could not do this without the help of so many family and friends. Whether that help comes through support from a card, a phone call, a visit to the hospital, dinner, or babysitting it is appreciated more than I could ever articulate. My boys have been cared for so well during this experience. We kind of have the week down to a science. They look forward to their "Aunt Lola days" in which they are completely spoiled. I really believe that all things are put on-hold when our boys walk through the door at Lola and Jerry's.

My sister-in-law, Renee, is a true blessing as are all the meals she so graciously prepares. Dawson and Lane look forward to playing with Ken and Renee's kids each week and I am at ease knowing they are in good hands.

Lori, our full-time babysitter has had a chance to breathe with all the help we've been getting. I can say without a doubt when she is at our house watching our boys she barely has a chance to take a breath. Lori, I greatly appreciate all you do...cleaning, cooking, folding laundry and most importantly putting our kids first. We are so blessed to have you in our lives!

Picking up any left over days would be The Hall Clan. I can't say enough for what your boys, correction, men mean to Dawson and Lane. I know the scavenger hunt will go down in history as one of Dawson's favorite memories.

And, as always, my Mom and Dad. Although it has been just about the most difficult time to have a baby in our family, due to racing season, they have still found time to help out. Even more so, they keep me in check reminding me that I need to spend time having fun with my boys. The afternoon at the lake was much needed. Thank you all a million times over.

Tiny...but growing!

So, so tiny...yet she takes up so much room in our heart!

The strength of someone so small is a beautiful thing. Audrey is determined that the meaning of her name, strength, is very fitting for her. She continues to amaze us daily with her will to get even stronger.

What a week it has been for Audrey! I imagine her world has been turned upside down with all the new things she has had to get used to. After a great week without oxygen during her second week of life, she has returned to wearing her nasal canula or "nose" as they call it in the NICU. Her "nose" has done such great things for her. She has gained almost a pound over the past two weeks and now weighs a whopping 3 lbs. 14 1/2 oz. The reason for all of her gains is a direct result of the oxygen. Preemies work so hard just to breathe that they burn more calories than they are able to take in. By assisting Audrey with her breathing, she doesn't have to work so hard, thus reserving those calories for some good weight gains! It's absolutely amazing if you think about it, in the past week she has gained 25% of her birthweight! Can you imagine gaining an additional 25% of your body weight in a week? Yikes!


Besides her good gains she has also been able to maintain her temperature with her isolette turned down to 87 degrees. Since she had been keeping her temperature in the normal range with the isolette turned down the neonatalogist gave the o.k. to dress Audrey and turn the isolette down to room temperature (they do keep the rooms warm). Oh, to dress Audrey! So, so fun! I've been accustomed to boy clothes with puppies and racecars which are cute, but oh, to see pink! What a sight. The first outfit she wore was a white sleeper with purple flowers. The best part were the little feet, they look like little purple Mary Janes with bows on the front of them! She finally looks like a little girl instead of just a baby in a diaper.


She did so well once she was dressed that they moved her into her big girl crib! What a sight to see when I walked in the next morning. No more reaching through holes to touch our baby, leaning down to sing through the holes, or that awkward diaper changing position. They did keep the isolette in the room and ready just in case. It has now been two days of the big girl crib and I'm proud to say she's working hard to keep her temperature up.


Audrey is doing so well, yet has a long way to go before reaching her due date of September 15. Currently she is considered a 34 weeker, we are just starting to attempt bottle feeding. The reason for this is that before babies are 36 weeks they aren't able to suck, swallow, and breathe like a full-term baby. Audrey attemps to take one bottle (breastmilk, of course) a day and I'm allowed to nurse one time a day, otherwise she is still being tube-fed. She often falls asleep before finishing her bottle, it is an absolutely exhausting task for her. When this happens they give her the remainder of her milk in her feeding tube.


We continue to be amazed by the power of prayer and what great things God can do! Each day Audrey proves this to us. Again I have to thank each of you for your prayers and kind words. The cards that we have received mean so, so much to us. It's incredibly moving to receive cards in remembrance of Olivia and welcoming Audrey. Each card for Olivia has its place in her memory box and will continue to warm our heart each time we read them. To hear a friend or family member say "Olivia" or to read her name is like a giant hug. A reminder that she is not forgotten.


I will continue to try my best to give updates on Audrey's progress. The past three weeks have been exhausting, both emotionally and physically. Yet I find myself continuing to need the therapy session this blog provides everytime I start writing about my precious girls.

NICU week 2

Sweet Audrey

Our sweet Audrey had a great second week...notice no oxygen and no bili-light in the picture above. She is just a sweet, precious baby that needs to grow and get stronger. My cousin, Todd Phillips, was talking to his mom about Audrey and said how amazing it will be to watch her grow and develop in the next ten weeks. We get to witness what usually is still happening in the womb. This is so true. I still get updates via email that explains how the baby is growing in utero. It's so interesting to see how Audrey would be developing if she was still in the womb. Below is where Audrey is today at 33 weeks and a comparison of where she would be if she was still in the womb.

Baby at 33 weeks in utero

• weighs close to 4 lbs
• just passed 17" long
• rapidly losing that wrinkled, alien look

Audrey Olivia, 33 weeks gestation

• weighs 2 lbs. 14 oz.
• 15" long
• definitely still has that wrinkled, alien look (we think its sooo cute, though)

What they include about mothers at this time is really different from how I'm feeling at the moment...

Mommy-to-be at 33 weeks (and I quote)

• may find yourself waddling or bumping into counters
• may be feeling some achiness or even numbness
• many women feel sexy at this stage

Me, post pregnancy

• bumping into things, yet not because of a big belly, but due to exhaustion
• no numbness, feeling every ache and pain.
• feeling sexy...come on, we all know the answer to this one

On a more serious note...God is Good. I am able to smile, when I wondered if I would be capable. He has given me strength that I didn't believe was possible to possess, let alone after delivering our babies. Not only has he provided strength, he has provided a miracle. As I hold Audrey each day I realize how blessed we are to have her. She has gone through so much for someone so, so tiny. I know she has a long ways to go, yet every step she makes towards coming home causes reason to celebrate. I will never again take for granted a healthy pregnancy free of complications, seeing a baby breathe without oxygen, the seemingly simple task of nursing or drinking her first bottle. The list could go on and on. There is so much we have to be thankful for.

Thank you does not seem like enough for all the generous help friends and family have provided over the past four months. Our friends at Grace Brethren Church in Wooster have truly been a gift from God the past couple of weeks. The meals that have been brought to our family have been delicious. I appreciate these meals more than you know. It is so wonderful to be able to stay with Audrey at the hospital and know that my family will still have a warm, delicious meal. I am overwhelmed by the generosity of people that do not even know us, yet have shown so much compassion. Along with the meals it has been nice to catch up with old friends and meet new members of our church family. As for family, I cannot say enough about all the help with our boys. Lane and Dawson are going to think life is boring when Audrey comes home and they are summoned to the our house instead of being spoiled by their Aunts. It is such a safe and secure feeling knowing that my boys are not only well cared for while we're with Audrey, but that they are having such a good time as well. Hugs to each of you.

Audrey Olivia's First Week

When they placed you in my arms, you slipped into my heart.-- Author Unknown

What a miracle our sweet Audrey is! The meaning of her name, strength, is proving to be true.

As if all the complications with TTTS has not been enough she now will spend her first 8-10 weeks of life in Aultman's NICU (neonatal intensive care unit). Her strength continues to amaze us daily. The nurses in the NICU at Aultman are wonderful and provide such encouragement as they update us on Audrey.

She has come a long way in just 9 days, continuously improving. She is completely off oxygen and has said good-bye to tanning under the bili-light after just 3 days. She is enjoying her feedings and is currently up to 24 cc's, which is her max for her weight...a whopping 2 lbs. 12 oz. She's almost back up to her birthweight, 2 lbs. 14 1/2 oz.

Audrey is perfect in every way, just quite small. As far as age goes, she will continue to be referred to in gestation weeks. We are currently at the 32 week mark. She is being fed through a feeding tube and will remain that way until 36 weeks. It's hard to believe it will be four more weeks until I can even attempt to feed her. For now, I am content to spend my days holding her and realize this precious gift God has given us. She truly is a miracle.

I look forward to each daily visit and watching her as she grows, even if it is only in grams at this point. I'm sure someday in the future I'll look back and be amazed at how small she once was.

I'm starting to feel like Audrey's Mommy as I got to change her diaper Thursday. Talk about a challenge. I have never changed a diaper of a preemie, let alone a preemie in an isolette. It might possibly be the most awkward task for a Mommy. For starters, you have to change from the side position and through two holes that are about 8" in diameter. All while trying to be as gentle as possible, because your sure that she's so tiny she just may break if you do anything wrong. The nurses and I laughed together as I realized that my first change was not up to par. Her diaper was on, but that's about it. I'll get it...it's just going to take some getting used to. It felt great to be able to do that, even if I'm not really good at it yet.

Along with the diaper change, came another milestone...the bath I got to give her on Saturday evening. How fun! I couldn't believe how much she enjoyed it...she didn't even cry. I figured she would be wailing the entire time, but she must like being out of her isolette and in her Mommy's arms.

I spent today singing to her as I kangarooed her for three hours. No, I don't wear a womb shaped pouch...Kangaroo Care is simply holding the baby chest to chest. It is absolutely wonderful and helps to strengthen the bond between mother and child. The numbers on her monitor (heartrate, blood oxygen, and respiratory rate) all even out when I'm holding her. The monitor is Kevin's favorite part of her room. Seriously, Kevin rarely takes his eyes off those monitors everytime we are there to visit. The continuous beeping, binging, and other alarms don't really allow you to relax while in the NICU.

While Kangarooing, I like to tell her stories about her life and how lucky we are to have her. I tell her all about her brothers and how she needs to start growing or she's not going to survive at this house. The nurses comment on how she's such a feisty little lady and although I have no idea where she gets that I'm thankful for every ounce of fiestiness she has in her--it will only help her to get through her NICU stay.

I have to say thank you again to each of you for your prayers. God has provided the strength we have needed to get through this difficult, yet joyous time. Your cards, gifts, meals, babysitting and rides to the hospital are appreciated so very much. I'll continue to update our blog as much as possible although updates may be slow. We are extremely busy with visits to Audrey at the hospital and trying to keep life as normal as possible for our boys. As I sign off for tonight, know that each of you will be in my prayers and how thankful I am to have such a supportive group of family and friends.