Eva’s Evolution Of Hair

Gettin’ washed

Brushed forward

Side part

Brushed back

Middle part

Messy do

Air dried

The End

Things that were missed

Apparently I am not a very good multi-tasker. I can only give one thing in my life my attention. The past 3 months Eva has obviously gotten 100% of my attention and along with that comes a lot of mommy guilt, of course. It’s ok though, because I’ve promised myself that I will make up for it all next year! So, here are the things that were missed during this time…

~Aidan’s Birthday~

Can I really be blamed for this one? His birthday was the day after Eva was born! He opened his presents in my hospital room right after he saw his baby sister for the first time and transport took her to Primary Children’s.

*Side Note*

Another thing that happened on that day-When Rich was bringing the kids up to my room to meet Eva before she was transported, Maya fell and hurt her thumb. We were worried that she might have broken it so he took her in to get an x-ray.

No break, just a sprain. Could we stuff any more excitement into that day?

Back to Aidan…Rich made it up to him by taking him out, a few days later, for ice cream, a movie and then to play games.

 

Next thing we missed?

~Maya’s Birthday~

Maya turned 5 on September 22. This is where having the worlds most amazing family-in-law comes in. I was totally and completely overwhelmed with Eva coming home and everything that came along with her so my AMAZING sister-in-law, Julie, took my girls in for a month. Rich flew Maya and Arabella out to Missouri and that is where they had the time of their lives and bonded with their cousins.

Julie went above and beyond for Maya’s birthday, throwing a killer party with all of her cousins.

Making a Kirby pinata!

Birthday morning

Amazing birthday cake made by Aunt Julie!

Wow!

My cute 5 year old!

 

~Rich’s Birthday~

With Rich’s mom’s help we were able to make it a special day. We made his favorite tacos for dinner and then had ice cream cake.

This is part of Rich’s gift from me:D Let me preface this by saying that one of the rules that Rich had to promise to follow in order for me to agree to him getting a motorcycle was that he could only ride it on base. Call me mean but I didn’t marry the guy for him to die on a motorcycle!

Next

~Halloween~

Ok, So we didn’t actually miss this one but I never blogged about it. We had a really fun halloween between the base party, our ward trunk or treat and Halloween night trick-or-treating.

Everywhere we went we heard, “Mom! Dad! It’s Scooby Doo!”

 

Other than those big events, I didn’t miss a ton of other stuff. My biggest regret is that I didn’t pick up my camera more. They all grow up so fast that just 3 months of not capturing their growth felt like an eternity. I love my stressful little blessings. They make my heart happy!

Back To The Beginning: Tender Mercies

If there is anything that I relearned during our “ordeal” (for lack of a better word), it is that we have not been left here to find our own way through life. If we will be still, we will feel heavenly guidance. Nothing happened the way we had planned it and that was a blessing in disguise. My testimony that we have a loving Heavenly Father, that is in the details of our lives, was strengthened as Rich and I sat at Eva’s bedside in the NICU at Primary Children’s Hospital in Salt Lake. As we reflected back to the beginning and recognized all of the little blessings that had led us to that point, we were both brought to tears. While it has been hard, we both know that everything has been as it was meant to be.

When we found out that I was pregnant, Rich carefully research doctors that specialized in high risk pregnancies. We knew that there was a really good chance that our baby would be born with Vocal Cord Paralysis since 2 of our 3 kids had it at birth. We wanted to be prepared and avoid the horrible experiences we had at both Aidan and Arabella’s birth.

Arabella's Birth

Aidan's Birth

We found a doctor that we really liked and ran with him, telling him from the very beginning our kids’ medical history. He was very reassuring and together we made a plan to ensure Eva’s safe arrival. As my due date got closer it was time to carry out our plan of inducing me so that we could be sure that 1- My doctor would be there, and 2- The NICU staff could be ready and in the delivery room. I was scheduled to be induced on August 16th. My bags were packed and I was sooooo excited and ready! Then, the night before the big day, I got a call from Labor and Delivery. They told me that my doctor had been in an accident and that he wouldn’t be available to deliver my baby. They didn’t know when he would be back and that was all of the information they could give me. They then proceeded to tell me that there is a new doctor(fresh out of school) that on occasion assists my doctor and he would be available to deliver my baby. Ummm, what? That was absolutely not a risk we were willing to take. If something were to go wrong we wanted somebody that had a lot of experience that could handle the situation. We passed on him. Why was this happening? After 9 months of planning, how could something so random, like my doctor falling off of a ladder (as we would later learn was the “accident”) happen at such a critical time? Now, looking back, even that was part of the plan.We looked into and asked about a couple of doctors that we felt good about but none were available. They told us about a Dr. Bitner that was willing to deliver but for some reason we both had a very distinct feeling that we didn’t want him to deliver Eva. We decided to just let it go and figure things out on Monday.

Rich and I had the weekend to think about what we were going to do. By Monday we both had a completely different feeling about Dr. Bitner. The bad feeling was gone and was replaced by feelings of peace. We scheduled the induction for the next morning.

The labor went very smoothly and I felt very little pain as the epidural, which KILLED going in, numbed me all the way up to my chest. I dilated quickly and was ready to deliver by noon. The doctor was called, the NICU staff was called and I was ready to push. I pushed a total of 2 times and during the second push the doctor told me to look down and I actually watch Eva being born. It was incredible. This was the moment I had been dreaming about for the past 9 months. I had pictured in my mind Eva coming into the world, belting out a loud cry, everybody saying congratulations and the nurse handing me my perfectly healthy baby. That is not at all what happened. She came out and let out tiny little squeaks of a cry. They gave her a chance. They gave her a bit of oxygen and then handed her, all wrapped up, to Rich. He brought her over to me so that I could see her but I couldn’t see her face because of the angle he had her at. I kept trying to lean forward to catch a glimpse of her face but the nurses kept telling him to give her back to them because her color was changing. That was it. They rushed her off to the NICU before I could even see her. I was devastated. Every dream that I had, every scenario of her being fine, that I had played out in my mind felt like a sick joke to me. I was almost angry at myself for feeling so confident and fantasizing  about what it would be like if she was healthy.

After they switched me to a different bed they rolled me in to see her. All I could do is cry. I fake smiled for a picture and then cried.

(I know I already posted these next two pics in the previous post but they are better suited for this one:)

They took me back to my room and left Rich and I alone. I sobbed uncontrollably and just kept asking why. Why couldn’t I have the privilege of being able to go home with my baby? Why did I have to go through this again for the 3rd time? Rich kept telling me how blessed we are and telling me to just be grateful that we have such a beautiful baby but I just couldn’t see past my pain.

Later, after I could move my legs a bit, they put me in a wheelchair and took me in to hold Eva for the very first time. This was the moment that everything changed for me. I got to hold this incredibly beautiful little miracle that I had carried for 9 months that was all mine. I instantly felt something come over me that made me forget about all of the “why me” and “life is so unfair”. Suddenly, I was the luckiest girl in the world that had it all. In that moment I knew that I was ready to take on anything and everything that we would have to overcome for this little angel from heaven. It was the single most empowering moment and I couldn’t help but smile.

Eva was transferred to Primary Children’s Medical Center in Salt Lake the very next morning. Rich brought the kids in to meet their baby sister before she was transported.

Even though this is horrible quality because it’s a picture of a picture, I love it! This is our first family picture:)

 

Transport team leaving with my baby

When we arrived at PCMC we were immediately put in contact with Eva’s ENT, Dr. Muntz. He did a bronchoscopy and, of course, found exactly what we told him he would find. Eva did in fact have Bilateral Vocal Cord Paralysis. Dr. Muntz, we would later find out, is one of, if not the best ENT’s in the western states. He is the head of the ENT department at PCMC and we were told by the hospitals trach coordinator that we were so lucky to have “drawn the Dr. Muntz straw”. Because of the day and time that Eva went into the hospital, she got the best ENT. This is when both Rich and I had a spiritual confirmation that The Lord’s hand was in the details. Every single thing that had happened to that point, was as perfect as it could possibly be. Things that I saw as major bumps in the road were specifically placed there so that we could all be exactly where we needed to be at the exact time that we needed to be there. For example, the bad feeling we had about Dr. Bitner on the date that I was initially supposed to be induced. I now know that the bad feeling wasn’t about him, it was that I wasn’t supposed to be induced at that time. We experienced so many tender mercies along the way that there was no doubt in our minds that even though our hopes of a healthy baby didn’t come true, Heavenly Father was more than just aware of us, he was guiding our path.

Two days old

One more little experience I want to write about because I don’t want to forget. The night before I was induced I couldn’t sleep. I’m sure that’s not out of the ordinary for anybody about to have a baby the next day! I was lying in bed feeling completely torn as to what I should pray for. I didn’t know if it was right of me to ask Heavenly Father to bless me with a healthy baby if it wasn’t the plan for my life. At the same time I was having such a hard time not asking for that and asking instead for strength to handle whatever happened. I didn’t want to ask for strength! I just wanted a healthy baby! So, as I was laying there for hours, I made this facebook post:

“Anxious and can't sleep. Isn't it hard to pray for faith and strength to be able to take on whatever might happen rather than praying that everything will go the way I want it to go? Sometimes trusting in HIS plan and letting go is hard and scary.”

This was something that I truly struggled with all night. After many hours of thinking and praying, I finally fell asleep. That morning, as I was getting ready for my big day, I was still pondering the feelings I had all night. I distinctly remember putting my shoes on and a thought coming over me that said, “His plan is ALWAYS better”. I felt so happy! I received my answer! I quickly tied my shoes and made this post on facebook.

“After a long and mostly sleepless night, I've decided that HIS plan is always more beautiful in the end. We are able to witness and appreciate the miracles that happen in our lives because of our experiences. We are so blessed!”

5 1/2 hours later, Eva was born. Heavenly Father knew that I need this answer. While I took a moment to mourn the loss of the dreams that I had of leaving the hospital with my baby, I was later reminded that, in fact, His plan IS always better. I will be a better person for it and I wouldn’t trade that growth for anything.

Our New Normal

I’ve obviously not had the time or energy to keep up with my blog during this busy time. I’m going to have to play catch-up and try to remember as many details as I can another time. I can’t believe it has been 2 1/2 months since Eva’s birth. While we had the most positive outlook on our situation and were so hopeful that everything would run smoothly, life had a different plan for us. It has been a hard and emotional rollercoaster ride with little Eva. Things are starting to get a little more stable and we are beginning to settle in to our “new normal”.

Eva has had a rough couple of months of life. She got the trach at 3 days old, had a swallow study where she was able to swallow a nectar consistency (thickened formula) just like Arabella. She has a very weak suck and wasn’t able to drink her full feeding amount so she was sent home with an NG tube which is a tube that goes into her nose, down her throat and into her stomach. We were able to avoid the g-tube. She came home after 2 1/2 weeks on September 4th and the very next day started throwing up. It was so overwhelming and stressful handling a vomiting baby with a trach that I couldn’t take good care of Eva and the girls. My sister-in-law Julianne came to my rescue and we shipped the girls out to her in Missouri for a whole month! That is a whole other post for later though:D

                      Pre-trach                                                            Post Trach                               

 

Between that time and now, Eva was hospitalized for 2 days with possible pneumonia from aspiration which she was cleared of and then put on continuous feeds, which means she is being fed 24/7 through the feeding tube, for the vomiting. It has improved a lot but she still throws up at least 2-3 times a day. I can’t let her out of my sight because I need to be able to see if she is going to throw up. She is at such high risk of aspiration because of the paralyzed vocal cords and the trach. I need to be able to see and hear her at all times. I can’t drive anywhere by myself also because of the vomiting. Every time she is in the carseat she throws up so for this reason I have to be driven everywhere. We don’t leave the house except to go to doctors appointments and church which I have been to only 3 times since she was born.

ER visit #1 for the stomach pain and vomiting

ER visit #2 and subsequent hospital stay. She just happened to be wearing the same pj’s as the first time we went to the ER.

 

Because she wasn’t able to keep down a majority of her milk, she lost a lot of weight. She was born at 7lbs 10 ozs and got down to 7lbs 3ozs when she was almost 2 months old. She has been on fortified formula for the past 2 1/2 weeks. We add extra scoops of formula as well as lipids which is basically actual fat, to her formula and she now weighs 8lbs 3ozs!!!

Eva 3 days ago

Eva has had a virus for the past 3 weeks which means that I have to constantly suction her. This is completely consuming. At it’s worst I was suctioning her every 5 minutes during the day, sometimes more. It is better when she is sleeping but there were several night where I was up suctioning her every 15-30 minutes throughout the night only to continue every 5 minutes during the day. There were obviously gaps where it wouldn’t be quite as frequent but those were rare. Last night was the first night in a long time that I only had to get up to suction her TWICE!!! She is getting better and I’m feeling less like a zombie.

Eva has developed an oral aversion and cries when I offer her a bottle or a pacifier. The trauma of having to put the NG tube in her nose and down her throat every time she pulled it out coupled with the vomiting has made it to where she has a fear of allowing anything in her mouth. You can see in the pictures below just how long the tube is. Its not hard to see why it is so traumatic to have it put back in. We have decided that at this point the NG tube is holding her back from progressing with her oral feeding so we have scheduled a surgery for this Friday to get the g-tube placed in her side that leads straight into her stomach. Hopefully having everything away from her face and throat will help her to improve with eating.

1st time she pulled out her NG

I took advantage and took pictures of her tube free face.

2nd time she pulled out her NG…I lost track of how many times it happened after that. Lets just say I’m a pro at placing NG tubes:(

I think that is everything in a nutshell…all the crappy stuff at least. Now for the good stuff!

In spite of all of the stuff she has had going on she is a very happy baby. There was a time when I thought she had colic but as it turned out she was in excruciating pain from being fed 80cc’s every 3 hours and not at a slow drip throughout the day and night. She was having stomach spasms:( Ever since we made the switch, she rarely cries.

Eva has started smiling! She gives the sweetest smiles especially right after waking up from a nap.

One of her first smiles captured

My girl is so animated! Even though I can’t hear her, I always know what mood she is in by her expression.

As of last week she can support her head on her own. She is just a smidge bobbly but is getting stronger every day.

She LOVES having her head rubbed and scratched. This is great for me because I love playing with her awesome hair anyways so it’s a win win!

Eva’s many hairstyles

As natural as it gets, fresh from a bath

She is, by far, the worlds most loved baby ever! All three of the kids can not keep their hands off of her and are constantly fighting over who gets to hold Eva and who gets to snuggle with Eva and who gets to lie by Eva. She is their whole world! There hasn’t been a second of jealousy over all of the time I have to spend with her. Aidan even told me the other day that she is his best friend.

 

It has been hard and I have had many tear-filled meltdowns but I wouldn’t trade Eva and everything that she is for anything in this world. I wouldn’t trade her for an easy life with just normal, every day stresses for a split second. She has such a strong and sweet spirit that I feel so blessed to have been given her to raise and love. She is the piece that completes our family puzzle. We are all in LOVE with this little angel!