The Answer

I've been needing to write this post for a long time.  It's hard.  I guess I have felt like if I don't talk about it, maybe it's not real.  As most of you know, we had lots of bad news with ultrasounds during our pregnancy but we never really had a reason why.  Then, our girl ended up in the NICU for 2 weeks and we never knew why.  On November 30, we got our answer.  Layla is missing the end piece of chromosome 11; she has Jacobsen's Syndrome.

When no one could find a reason for Layla's thrombocytopenia, the neonatologist asked a geneticist to visit L to see if he could notice anything.  They took her blood while she was still in the NICU but we never heard anything.  We were told everything looked normal when we were discharged and that if anything showed up, they would call.  We got that phone call about 2 weeks after we were home.  The genetics counselor said a small piece of 11q  was missing.  They had missed it on initial testing, and needed to do further testing (a microarray) to determine the size and location of the missing piece. We took Layla back for the blood work and then had an appointment almost 3 weeks later to find out the results. It really never hit me.  At least not until Robert and I were sitting in an office getting the diagnosis.  Jacobsen's Syndrome affects 1 in 100,000 live births.  Our geneticist had only seen one other case and it was several years prior. We left not knowing much except that we had the answer for her tilted heart, duplicate ureter, hydronephrosis and thrombocytopencia.  In fact, 95% of individuals with JS have a blood clotting disorder.

Robert and I went through every emotion possible over the next few days and weeks. We each deal with things differently so there were some rough days.  Luckily, I found a support group for 11q on facebook.  It really helped to find other families.  They also have a biannual conference in San Diego that we plan to attend in 2014. Thankfully, we live in a city with resources too. I immediately called the Children's Center for Development at USM and got Layla on the list.  She had an evaluation in January and although she tested developmentally on track (hooray L!) she will be eligible for services since she has the JS diagnosis.  She actually starts physical therapy, occupational therapy and speech therapy tomorrow!

The future is unknown.  We don't know what all challenges we will face, but we know we will have them.  Right now I am just thankful.  Thankful, that our sweet girl is so incredibly healthy.  Many indivduals with JS have heart defects and feeding problems just to name a few of the health issues.  Layla is doing great!  She is eating and growing, babbling, cooing, rolling and moving and being our perfect little 5 month old.

3 Months

Our Layla Bug turned 3 Months on January 10!  I am late posting her 3 month stats and most of the stuff below has changed so much in the last 3 weeks - like sleeping through the night!  Whoo hoo!  

We waited until bedtime for her picture and she was so tired!

3 Month Fun Facts:

• She weighs 8 pounds 3 ounces!
• She is 20 inches long!
• She eats 6-7 times a day.  She has 3 bottles at daycare and nurses 3-4 times a day. She eats about 3 ounces!  
• She wakes up once a night.  She goes down for bed about 8:30-9:00 and wakes up around 3:30 or 4:30.  She eats and goes back down until morning with no problem.  
• She is wearing newborn diapers.  They are tight on her little leg rolls though!
• She is wearing newborn clothes!  
• Layla loves: having morning talks, smiling, playing on her tummy time mat, eating, bathtime, looking at lights and fans, and pulling mom's hair.
• Layla doesn't like: tummy time and being hungry.  She's pretty much happy about everything else.
• Daycare is going great.  Her "teachers" love her and she doesn't mind getting dropped off for the day so it makes it easy on me!  I really appreciate my weekends with her now!

 Our morning talks!

 Am I a bad mom for taking a picture of her crying?!  She hardly ever throws a fit so I couldn't help myself!

 Layla's First Christmas!

 Our only family picture. Daddy was being silly!

 Another morning talk.

 Trying for another family picture.

My little Christmas gift.

What Layla and I thought about NYE.

2 Months

Sweet Layla Grace turned two months old on December 10!  I wish we could slow things down!

 Daddy is taking the pictures and mommy is in the corner. :)

 Mommy is in the other corner.

 I've over the pictures, daddy!

Wait, where's mommy?!

2 Month Fun Facts:

• She weighs 7 pounds!
• She is 19.5 inches long!
• She eats 7 times a day.  I am mostly nursing but she's had a few bottles of breast milk when I have needed a few extra hours of sleep.  She eats about 2.5 ounces!  I tried to get her up to 3 but she is just not ready yet.
• She wakes up once a night.  She goes down for bed about 10:00 and wakes up around 3:00 or some variation of that.  She eats and goes back down until morning with no problem.  She has been sleeping in her crib since 8 weeks.
• She is wearing newborn diapers.  We go through about 8 or 9 a day.  Mom doesn't like her to be wet! :)
• She can wear some newborn clothes!  Most pants are still too long on her though.  She has outgrown some of the preemie outfirts but can still wear others.
• Layla loves: playing on her tummy time mat (but not on her tummy), eating, bathtime, sleeping on daddy's chest, going for walks, her binky, and looking at lights and fans.
• Layla doesn't like: tummy time, having her nose suctioned, being hungry, or swallowing her medicine.
• Sweet girl is starting to get a personality and we love watching it develop.  She is starting to make noises and get excited!

Layla loves to make sweet faces after she eats!  These are from different nights.

Presenting "Little Girl in a Big Bed"!

Robert loves to have fun with the camera and L!

Layla met Santa!

Layla absolutely adores me and I love it.  I'm sure it's just because I am her meal ticket but it's the sweetest thing.  No matter who has her, when she hears my voice, her eyes will search everywhere to find me.  She looks at me like I am the only thing that matters.  It's truly the most amazing feeling.

I go back to work on January 2 and I am not handling it well.  I thought I would be so ready to get out of the house and get a normal scheduled life back but I just can't imagine not being able to see her every minute of the day.  I could handle a year long maternity leave. :)  Layla will be going to a great daycare and it's close to both of our jobs so we have easy acccess to her.  Say a little prayer for this mommy on January 2.

UMC Days

As soon as we arrived at the NICU, we spoke with the neonatologist and nurse practitioner.  They had consulted pediatric cardiology, urology, hematology and genetics to come see Layla.  Layla was hooked up to monitor her heart rate and breathing - every baby in the NICU had to be monitored.  She also had an IV of a small amount of sugar water.  Other than that, she was simply there for testing to see why her platelets were so low and to check on the issues that were noticed while she was in utero.  We were able to meet Dr. Harmon, the pediatric urologist, the next day.  We knew we would be seeing him at some point after she was born so it was nice to get to talk to him so quickly.  He confirmed that Layla had a duplicate collecting system (2 ureters) for her left kidney which was causing the hydronephrosis.  There are two surgery options that he explained to us and we will see him in January to determine what he will do.  He said it was an easy procedure and she would be just fine!  We really liked him and have heard wonderful feedback from other parent's whose children have seen him. She had a test done that showed she had grade 5 reflux on that kidney. Layla will be on anitbiotics daily until surgery to prevent an infection. The next day we saw the pediatric cardiologist.  He used lots of big medical words but basically, Layla's heart is fine too!  She had a PDA and PFO at birth which are both pretty common in early babies.  The PDA was closed by the time we met him.  We will see him again in April to make sure the PFO has also closed.  (Side note - no doctor has heard a murmur since then so hopefully it's already closed up!) Layla had 3 echocardiograms within the first two days of her life.  We actually saw a pediatric cardiologist from Oschners before we left Wesley's NICU.  He is the one that saw the PDA and PFO.  He also mentioned that her heart was more midline in the chest than where it should be.  This backed up what the sonographers were seeing while she was in utero.  The UMC cardiologist didn't have an issue with the positioning.  We will double check with him on everything when she has her echocardiogram in April.  Layla's platelet count was up to 285,000 after her blood transfusion in Hattiesburg.  Each morning, she had a CBC (complete blood count) to check her platelets and each day they were going down again. The neonatologists (both at Wesley and UMC) thought Layla was experiencing neonatal alloimmune thrombocytopenia.  The needed a sample of my blood to a lab in Los Angeles to confirm.  I had to check in as an outpatient that Monday and get lab work done.  Each day was pretty much the same - she was just there getting her blood drawn every morning and that is it.  That Wednesday, the neonatologist infomed me that I did not have negative antigens meaning it was not NAT causing L's low platelet count. He didn't know what was going on then!  They had already ruled out bacterial, viral or fungal infection.  The hematologist came by during that time, and she also didn't have an idea what could be causing it.  She said every test she would have ordered had already been done.   The next day, a new neonatologist came on.  He introduced himself and told me that Layla was too healthy to be in the ICU.  He said if she could get her platelets to stablize, he felt comfortable discharging her and letting us see hematology as an outpatient.  That was a Thursday and Layla's platelet count was still trending down. Each morning when we woke up, one of us would call the NICU to get her count before heading up there.  Each morning I cried when I heard the news.  By Saturday, the count was down to 35,000 again.  Guess what happened Sunday though?  Her platelet count went up to 44,000 and on Monday up to 50,000.  Robert had to go back to work on Tuesday so we had to drive back to Hattiesburg.  I got up the next morning and drove back.  I walked in to the neonatologist telling me we could go home!  Her count was up to 55,000 - still very low (normal is above 150) but he felt comfortable with us going home.  After 12 days there, we could finally go home!  Layla had to pass a car seat test and we could hit the road.  We still didn't have a reason for the thrombocytopenia, but neither one of us cared.  What an amazing day!

 Her first day.  They put a bow on her (for mom's sake) to cover where they had taken blood from a vein in her head.

 Me telling the lady in the lab that I pass out.

 She loves her hands in the air!

 We were able to change all her diapers, feed her and check her temperature when we were there.  She did not like how long it took that themometer.

 Hour and a half long car seat test.

Changing into her going home outfit. She should have been way happier!

First nap at home.

The NICU at UMC is amazing.  I cannot say enough good things about the people there. They allow parents to visit as often and stay as long as desired and call anytime.  The doctors included Robert on rounds since they knew he was in the medical field.  Also, the doctors are around all day - you can just walk up and talk to them.  All the nurses were more than wonderful.  They were so sweet and loved Layla. They have a staff social worker who gave us lots of good advice.  If a baby was healthy, the parents were allowed to do everything.  Nursing was so important to me that we tried to be there for every feeding during the day.  At night, I would pump every 4 hours (I set an alarm throughout the night) and bring the mik to the hospital the next day.  They used my milk for her night feedings.  My heart still hurts for all the babies still there.  Layla was so healthy compared to the other 99.  That's right, there are 100 beds of sick babies.  Please pray for all of them and pray for the amazing medical staff that are helping those sweet babies grow and heal.

We are so thankful for all of our friends and family that were there for us during that time.  Layla had so many prayers going up for her.  I mean SO many.  So many people visited and sent gift baskets, gift cards and money for food, gas and hotels.  Robert's fraternity brother even let us stay in his lake house for the last several days.  People were so giving. We are beyond grateful for the love we received.  There is no way we can send enough thanks.  We truly appreciate each and every one of you. Robert and I celebrated our 4th wedding anniversary while we were there.  Well, he was in Hattiesburg working and I was in Jackson with his mom.  It was tough but I look forward to that 5 year celebration.  Our marriage is so incredibly strong and we will have a healthy one year 8 day old little girl to celebrate with us. 

1 Month

Our Sweet Layla Bug turned One Month Old on November 10!  She has her first cold which breaks my heart.  Luckily, her dad has it all under control.  He is a pro with the aspirator and saved the day with a pink humidifier!

One Month Fun Facts:

• She weighs 5 pounds 6 ounces! (That was her weight 2 days before her one month.)  Of course, she isn't on the growth charts for weight or length.
• She was 16 and 7/8 inches at her 2 week check-up and hasn't been measured since then.  Her "Aunt" Chrissy says she will just get to wear really tall heels one day! :)
• She eats 7-8 times a day.  I am mostly nursing but she's had a few bottles of breast milk when I have needed a few extra hours of sleep.  She eats about 2 ounces!  
• She wakes up about twice a night.  She eats between 11-12pm and 3-4am.  I am trying to read BabyWise but between thank you notes, weekly doctor's visits, and squeezing in naps, I haven't made it too far.  
• She isn't a fussy baby at all but she makes grunting noises all the time.  Her doctor says not to worry unless the noises are waking her up or making her cry.
• She is wearing Preemie diapers but we are going to switch to Newborn this week.  Newborn are a little big but we have lots of boxes of them so no sense in continuing to buy preemie.
• She wears mostly white Gerber Newborn Onsies while we are home.  We have a few preemie outfits that she wears when we "dress up".  Newborn clothes are still too big on her.
• Layla loves: sleeping on her dad's chest, Soothie pacifiers (they are as big as her face - hehe), bathtime, eating, riding in her carseat, and having her hands by her head.
• Layla doesn't like: tummy time (but she is very good at it - already so strong!), having her nose suctioned, having her hands swaddled and getting dressed.
• She is so funny when she is hungry!  She opens her mouth wide and attacks anything that gets near it.  I will have to post a video.

Layla got to meet her big sister Sugar when she got home from Jackson.  Sugar is very jealous of all the attention Layla gets and she pouts a lot.  I think she is used to being an only child. Sugar is sweet and gives Layla lots of kisses.

First day they met

Now they are BFF

Meeting Layla

My doctor called me on the morning of Monday, October 8 and wanted me to come in.  I found out we would be having a baby on Wednesday, October 10!  It was a very emotional and scary two days but Robert and I knew it was best to get our sweet girl here.  We arrived at the hospital at 6:00 am on 10/10/12.  My doctor gave me the option of induction or c-section and I opted for the induction.  I was already 2 cm dilated and halfway thinned.  Layla was monitored the whole time to make sure she tolerated delivery well.  Everything went great - the worst part was almost passing out (even though I was lying down) while getting my IV and the catheter (most annoying thing ever) after the epidural.  The pitocin was started at 8:00 and she went ahead and broke my water.  The contractions started right away, but I handled them fine until a little after 11:00.  I requested the epidural and received it a little after lunchtime.  By then, there was lots of pressure "down there" and I went from 4 cm to 9 cm quickly.  Once my nurse realized I was at 9 cm, it was like the room filled up with hospital people.  It was time to have a baby!  I slightly freaked out but Robert was amazing and never left my side.  I don't even know how long I had to push but I know I gave it all I had.  I didn't want Layla to be stuck in the birth canal long - yes, that was my thoughts as I was having a baby!  Then, there she was - 4 lb 1 oz of the most perfect little girl!

Last pregnant picture 

Perfect little angel 

Mom's first hold 

First family photo

Layla Grace Lee

October 10, 2012  2:24 p.m.

4 lb. 1 oz.  16 inches

Once she was born, they performed all the checks on her and cleaned her up.  She had a renal ultrasound and echocardiogram right after birth too.  Once all that was done (about two hours later), Robert dressed her and we got to hold our sweet girl.  The pediatrician came to visit and everything looked good.  She never had to leave our room!  About 9:00, a nurse from the NICU came in to get another blood sample.  Her first CBC showed very low platelet levels and the doctor wanted someone from the NICU to take another sample.  Those results came back as very low as well.  That's when the night went downhill.  The nenonatologist came to the room and said they would be taking her to the NICU and performing a blood transfusion.  He also said he wanted to transfer (via helicopter) her to UMC so she would have access to a pediatric urologist, cardiologist and hematologist all at one location.  Close to midnight, they took Layla away to the NICU.  Robert and I went to visit and then were sentenced (that's what it felt like) back to our hospital room for sleep.  I have no idea how anyone thought we could sleep.  I opted for no sleep aid medicine because I wanted to be alert the next morning.  Early the next morning we found out that she would be transported via ground instead of helicopter.  Thankfully, my doctor released me to allow me to go to Jackson.  She gave Robert strict orders to make me rest and use a wheelchair.  We went to visit Layla again and the UMC transport team was there.  The transport nurse was wonderful and promised to call as soon as they arrived - which she did.  They took Layla away (seriously, one of the hardest things for a mom to go through) and Robert and I packed up the hospital room and went home to pack for Jackson.

We are Having a Baby!

Our weekend has been spent in serious baby prep mode.  Layla is coming soon - like next week or the next at the latest.  I just wanted to take a quick moment to document this so we would have it and to ask for prayers.

She has passed all her BPPs and NSTs over the last two weeks but at last week's (34) appointment, our doctor said the sonographers were still worried about her heart.  Yes, more news we didn't want to hear.  We went to see Dr. Perry again this week (35) and he still thinks her heart is just fine.  BUT he also did her growth scan and she just isn't growing.  She was estimated at 3 lb. 14 oz. and was 3 lb. 2 oz. at 32 weeks so she hasn't gained much the past 3 weeks.  She should be over 5.25 lbs by now.  He wants her out asap so she can get the nutrients she needs.  We really won't know why she isn't growing until she gets here.  Please pray our sweet little girl comes out strong and healthy no matter how tiny she is.  I see Dr. Washburne Tuesday to find out Layla's birthdate.

Pregnancy Highlights

How Far Along:  36 Weeks

Size of Baby:  Estimated at 3 lb. 14 oz. at 35 weeks 5 days.  Forget Baby Center!

Total Weight Gain/Loss:  21 pounds 

Maternity Clothes:  I actually kind of like them. :)

Gender:   It's a Girl - Layla Grace Lee!

Movement:  She has been moving like crazy.  I actually think I am going to miss feeling her little self inside of me.  

Sleep:  Sleep has gotten so much better since the last post.  Still a lot of bathroom breaks but I am getting enough hours of sleep now.

Cravings/Aversions:  I still don't like food much.  I am trying!

Emotions:  I have actually held it together really well over the last few weeks until today.  This morning I just can't get it together.  I feel like my job is to take care of her and there is just nothing I can do right now.  I just pray that I am a good mom and that L is healthy when she comes into the world.

What I miss:  Nothing really.

Symptoms:  Starting to get lots of pressure in my lower abdomen.

What I'm looking forward to:  Meeting Layla and getting her to grow!

Since our last post, Robert and I had maternity pictures made and we've had 3 showers for Layla Bug!  To check us out at 34 weeks, visit HCS Photography.  We are so thankful for all of the showers from our friends and family.  Hopefully, I will have time to blog about those when little girl gets here.  Y'all know how I am about thank you notes - they may be later than normal but they will come!  Seriously, thank everyone so much for all the gifts for Layla and most importantly for all the thoughts and prayers.