Thursday, September 11, 2014

finding peace in the wires

On July 8th, I went into pre-term labor with our first child. Mila Elizabeth was born at 36 weeks at 2am. She had dark, beautiful black hair and a strong set of lungs. She looked perfect...

But she wasn't. We found out around 31 weeks that her bowels were dilated and not working properly. They were sure she would have to have surgery and they were right. At 5pm on the 8th she was taken into surgery.

She did great, but it ended up being worse than they thought. She had jejunal atresia but also had what is called apple peel deformity.  In short, half of her intestines were not working because of an obstruction and the remaining intestines weren't actually attached to anything. We were told her NICU stay would be upwards of two months.

We were shocked and sad but we were so grateful to know that she did great and was in good hands. The first night was awful... but it has gotten easier.

Oh, I should mention that in the middle of this we were packing our house, closing on our new house in a new city, AND moving. My husband was also finishing his MBA and was set to start his new job September 5th -- so we've had a lot going on...

I started to write a post about how to "handle" having a baby in the NICU when I realized that those pointers weren't what was getting us through all this. Sure, I'll post that post, but I thought I would share what has been my saving grace through all the chaos, sadness, and stress.

"The Lord is near to those who have a broken heart. And He saves those who are broken in spirit." Psalm 34:18

"For I know the plans I have for you,’ says the Lord, ‘plans for well-being and not for trouble, to give you a future and a hope." Jeremiah 29:11


I have complete faith the God has everything under control. We are not on this journey alone because He is carrying us. Sure, it's scary and depressing but I am able to take comfort in the fact that all of this is temporary.

You see, my husband and I have been through a lot in 6 years of marriage (you can read some about that here and here). We have been through more than most couples who have been married 30 years go through. It feels like we can't catch a break.

Our faith wasn't what got us through most of those times though... it was those moments that brought us back to our faith.

I have doubted God's goodness and grace. I have doubted His judgment. I have even asked why He is so unfair to me. I am in no way, shape, or form saying that I have it all figured out now or that I take every obstacle in stride. I get upset. I cry. I wish that I didn't have to go through such difficult things. I don't understand.

Saying that you have faith in God's plan and truly believing it are two different things. I have faith. I don't know what road we will go down, how hard it will be, or when it will end but I have faith that God is beside me always.

I hated seeing Mila in the little incubator with wires and tubes coming from all ends. I hated when she would cry and I couldn't do anything. I hated that she couldn't eat food for 2 weeks and I couldn't nurse her. I hated that I couldn't take my sweet girl home.

But...

I have loved seeing her grow and her excitement when she got food for the first time. I have loved seeing how in love my family is with her. I have loved that she got the best care and had the best surgeon operate on her. I have loved those little moments when she is fast asleep. I have loved seeing her in her father's arms.

There is beauty and happiness and goodness in the dark times. You just have to have faith.

I have had the following songs on repeat the last couple weeks and they have lifted my spirits on so many occasions.





I don't always understand God's plan and I certainly don't always agree but I know that that God is good, God is loving, and God is just.



Need more inspiration? Check out my Pinterest board. 

beginning life in the NICU

It's every parents nightmare. You go to your OBGYN appointment and you know you are getting an ultrasound. You and your significant other are so excited to see your little one but then your doctor drops a bomb.

Something is wrong.

We are sending you to a specialist.

I was 31 weeks when my doctor started to get worried about our little girl. It wasn't until week 33 that I was sent to a specialist. Mila's bowels were dilated and she wasn't having bowel movements. I kept thinking, "At least it's not her lungs or heart," but we were told without a doubt she would need surgery.

It sucks.

I had done everything right - I worked out 3 times a week, followed a low-carb, low-sugar diet, stayed hydrated - I was so disheartened. The doctors assured me that it wasn't my fault but it still sucks.

Week 35 I was told I had polyhydramnios - which meant there was too much amniotic fluid around Mila. My OBGYN decided to induce me at 38 weeks but at 36 weeks and 2 days I went into labor naturally. My labor was the dream labor. I only pushed for 3 minutes and she was out in 10 pushes. I healed perfectly.... unfortunately my baby wasn't perfect. I held her for less than a minute before they rushed her to the NICU.

She had surgery that evening and we were told she would be in the NICU for at least 2 months. I was so happy her surgery went well but my heart hurt that she wouldn't get to come home.

I am now a NICU mom.

I never thought in a million years that I would be a NICU mom but here I am. My baby is a NICU graduate. In the time Mila has been in the NICU, I have learned some valuable things and I thought I would share.



1. The first night is the worst.
I was discharged and went home around 4pm and was totally fine. It wasn't until my husband and I left again after visiting that night that it hit me. My baby isn't coming home. You dream of the going home and to be unable to do that is crushing. But believe me - it gets easier. I promise. It is never easy leaving your little one but they are in the best possible care and each time gets just a little easier to handle.

2. Stay busy
The NICU Mila is at had great visiting hours (the only times you can't be there at 6-9am and 6-9pm -- every other time is fair game). We go in the AM and then go back around 9pm. In between we went about business as usual. I remember sitting in the hospital thinking, "How can I go on!? How can I pretend like everything is normal or ok?" You just do. My husband and I are in the process of moving to another city and closing on a house, so we had distractions. Stay busy. Go out to eat, go shopping, see friends, and get rest. It helps.

3. Ask questions.
At first I didn't want to bug the nurses or doctors but I have been repeatedly told to never hesitate to ask questions. They want you to be knowledgable and they will answer your questions the best they can. For Mila, her recovery was a day to day thing so we were constantly needing and wanting updates. The NICU nurses are seriously the best. Every single nurse that Mila had were amazing. They were her cheerleaders, comforters, and care-givers - they truly cared about her.

4. If you are not comfortable with something - tell them!
I was not a fan of one of our daughters nurses and as rude as it may have come across I requested to not have her again. I won't go into why, but I was not comfortable and I refused to "suck it up" so I didn't offend anyone.

5. PUMP. PUMP. PUMP
It sucks at first. It hurts. And it is inconvenient. It takes up a lot of your day and you have to plan your day around it but it is the BEST possible thing for your little ones recovery. I was a formula baby so I am in NO WAY knocking formula but I believe your milk is the best thing for your little one. Getting up 2 times a night to pump sucks but it is probably less than what it would be if your little one was home. It also gives you hope and a purpose. You are doing something that will help heal your little one. When you have a baby in the NICU you feel helpless, so take heart in knowing that every little drop of milk you produce will help you baby get home faster.

6. Cut yourself some slack
I remember the first day we could only visit once and I felt horrible. I had to remind myself that Mila was in good hands and we had family members that could go sit with her. If you don't feel like visiting because you are tired, emotionally spent, or just don't want to - that's ok. It happens. You are human and your baby isn't keeping track

7. Kangaroo Care
If your baby is well enough, ask the nurses if you can kangaroo your baby. The benefits are amazing and you'll cherish those moments. I wasn't able until Mila was almost a week old. It was amazing. If the nurse tells you it's not a good idea, ask why and then make the choice. We were told no one day because Mila had a rough night with labs and what not. It sucked but if the nurses thought it was the best thing for her, we were ok with that.

8. Get some alone time
The most alone time I got was a 10 minute shower the first week. My husband was always with me, we were always at the hospital, or I was with family. As much as I love my family and seeing Mila I NEEDED alone time. I felt like I was going to snap on more than one occasion (I will say this - I did not have those crying spells postpartum that you are warned about. I haven't been overly emotional either - I'm just a very level headed person and my hormones weren't super crazy). My first morning alone was so nice.

9. Don't compare
I looked around the NICU and saw some very sick babies and I had to keep reminding myself that Mila wasn't as bad as some of those babies. I also saw babies doing better than Mila and would get upset. The last month she was in the NICU she was in Room 6 - which basically meant that babies were going home daily. Vincent and I would be visiting and get to see another family leave and it stunk. I would keep saying, "Well, at least she's close to going home unlike some of the super premies in Rooms 1-3." But in reality, you shouldn't compare. Your situation and struggle is your own. Do not discount your fears or compare your situation to the person next to you.

10. Pray
Pray, pray, pray. I believe there is no better comfort than talking to the Lord. I may not understand what is going on or why we had to go through it but I know that God has everything under control.

11. It. Will. End.
Keep repeating that. It will end. You won't be visiting the NICU forever and your little one will come home. It. Will. End. There will come the day when you get to load your precious one up into the car and you will be on your own. It may feel like that day is a fantasy but it's not. Just hold on. We got to take Mila home after 7.5 weeks and it was insane. We got the call the day before saying they wanted to discharge her and we were in shock.

12. The first weeks are the worst.
I knew it would be hard but taking home a sick 7.5 week old is different than a normal healthy baby. I had gotten into such a routine with going to the NICU and pumping, throwing Mila into the mix was tough. Worth it, but tough.



Mila went home on August 28th and was admitted to the PICU 2 days later. She was not eating and since she was a stomach baby we were worried. Thankfully, she has continued to gain weight and is doing pretty good ;)


Have more tips? Please share them with me in the comments.

From one NICU mom to another, if you ever need an ear, shoot me an email - mltd54@aol.com.

maternity photos!

So, I chose to do my maternity photos a little different. I'm pretty lazy so I didn't want to have to get dolled up each week and my husband isn't the greatest with a camera so I needed something I could edit easily. Here is the final!

(I'm missing week 19 because we were in Vegas and she was born at 36 weeks :)