Update on Layla 8/15

I don't know exactly why, but today was a hard day for me. At moments, things were wonderful and beautiful; however, the combination of exhaustion and longing for my baby often leaves me discouraged. 

I am incredibly grateful for all the blessings and miracles I have been apart of since I went into pre-term labor. I know that things could have been a lot scarier for myself and Layla. Because I am aware of how blessed I am, I feel pretty guilty for having such a difficult time. There are babies next to Layla who have been there for over 10 weeks; babies who need a lot more support. I can't even begin to imagine how their parents feel. 

I know that her time in the NICU will soon be a memory, but right now it sucks. People will mention to me how nice it is that I can rest and recover while my baby is in the NICU. I know these people are trying to make me feel better and I know they have nothing but the best of intentions, but I assure you I am not resting. Throughout the night I am getting up every 2-3 hours to pump and then I have difficulty falling asleep because part of me is missing. I would much rather be waking up to a crying baby who I struggle to nurse than to my alarm clock reminding me I need to hook myself up to the milk machine. 

Each day I expect to hear some type of time estimate which I know the doctors can't give me. I am just in this limbo between pregnancy, delivery and actually having my baby. All of these strange emotions are temporary, I know. I know that all of this will pass. 

Now let me be a bit more positive... Today our little girl is up 5 grams. It may be a small gain, but a gain nonetheless!  Layla is finishing each feeding on her own! It's now been two days of near-perfect eating. I don't know if doctors will increase her volume of milk or if they will take out her tube to see how she does... I just have no idea. The BEST news is that  her feeding orders have changed so that when I am with her, I get to feed her on demand!!! This makes me so happy because I would see her act hungry before her assigned feeding time and not be able to do anything about it. Then, when her assigned time would finally come, she would act tired and often her nurse wouldn't give her a chance to eat, thus giving her feeding straight through her NG tube. I hated that! Now, I get to nurse her when she shows any signs, regardless of the time. This is much less stressful because I don't have to worry about her "passing a feeding test."

The most incredible thing about being able to breastfeed my baby is how well she has progressed in only 24 hours. Yesterday her nurse helped us both a TON with breastfeeding and Layla has taken her feedings 100% ever since that sweet angel of a nurse helped us. 

Because Layla didn't look extra yellow or show any signs of Jaundice, they pushed back her bilirubin test again. She will have a blood draw in the morning to check her numbers... Here's to hoping! 

Even though I seem pretty down at the beginning of this post, I am okay. I know I have support and love from so many people. I am beyond grateful for Layla's health and I know she is in the second-best place right now-- first being home with her mommy and daddy.

Here's a milk-drunk, bald and naked baby to put a smile on your face:

Layla hates her tube so much that she has pulled it out 4 times😂 Her nurse did a good job taping that sucker across her face so it stays put. I know how you feel baby, I know how you feel.

 

Update on Layla 8/14

"Some of you may at times have cried out in your suffering, wondering why our Heavenly Father would allow you to go through whatever trials you are facing…

“Our mortal life, however, was never meant to be easy or consistently pleasant. Our Heavenly Father … knows that we learn and grow and become refined through hard challenges, heartbreaking sorrows, and difficult choices. Each one of us experiences dark days... These and other trials present us with the real test of our ability to endure.”

Today I stumbled across the quote above while listening to a talk given by Dallin H. Oaks. In the midst of wondering what I could have done to prevent my preterm labor, I feel a lot of comfort from that quote. Things happened the way they did for a reason. I may not know the reason immediately or ever, but I do know that I am becoming stronger from all of this. I'm not saying that things are getting easier, because they aren't. I just mean that this experience is one of purpose for me as a daughter of God, as a wife, and most importantly, as a mother.

I once had the opportunity to meet dallin Oaks at a time when I needed some direction. Without knowing my current circumstances, he simply told me, and two dear friends who were with me, that we ought not to worry about finding the "perfect man," but to find the perfect person FOR each of us. This ultimately led me to my decision to marry Greg and this experience we are currently facing is evidence that I did find the perfect person for me. Greg and I depend on each other and hold each other up. Often I feel he holds me up while I depend on him more than I can ever return the favor, but I do know we make a great team.

Today has been a great day for Layla! When I arrived this morning, she had gained weight and she had finished her morning feeding ALL BY HERSELF (entirely from her bottle with NO NG tube)! She continued to take her next two entire feedings from me. Three, 100% feedings in a row! Wahoo! Her doctor said when she starts taking 80% of her feedings on her own she can lose the tube. 

Her bilirubin count increased slightly, so she may go back under the lights tomorrow if her numbers climb. 

Today is bittersweet. Bitter in that my mom had to go home. She has been my angel over the last two weeks... Helping me through my hospital stay and encouraging me each night when I cry without my baby. I know she'll be back soon, and the next time she comes I am hoping Layla is home! 

Things are sweet now because Layla met her Grandma Johnson today! We are lucky to have help from Greg's mom and I am blessed to have her Christ-like countenance supporting the three of us. 

We are so proud of this little nugget. She decided to come early even though it would have been much easier for her to grow while still inside mama... She is one hard worker!

I put Layla in this preemie outfit and I am pretty sure it won't fit tomorrow😂

 Thank you for your continued prayers and support!

Update on Layla 8/12 & 8/13

Our little Layla girl is working so hard! Yesterday she was up 15 grams in weight and today she is up 19 grams! She is now up to 5 lbs 11 oz-- getting closer to her birth weight at 6 lbs! She is taking about 50-60% of her feeds on her own which means she takes a good amount of each feeding from the breast or bottle. She wears herself right out and then receives the remainder of her feed through her NG tube feed.

Layla was taken off her bilirubin lights for the second time because her numbers went down, hooray! However, her count today jumped up a bit (>11) and if her numbers get up to 14, she goes back under the lights. Pray that Layla's liver can filter out that jaundice!

Big news for today though... She ate her entire 60 ml feed on her own with NO NG tube feed! She is only required to eat 55 ml. Can she get a round of applause? 

Layla's goals for rooming in and then disharging are getting bilirubin count maintained and taking enough of her feeds without her tube. It's difficult not knowing how much time those could take, but we are so grateful that Layla is showing progress. 

After I visit for her 8:00 pm feed and snuggle for a bit, I head home while Greg stays for several more hours to study. I feel so blessed to be going through this experience with Greg by my side. He has helped me through my middle of the night pumping sessions and held me every day while I cry on his shoulder. I love watching him get set up with his laptop nearby to study with Layla snuggled up on his chest. Leaving at night is the hardest, but when I leave with her daddy still by her side, I cry a little bit less knowing Layla isn't falling asleep without her mommy or daddy.

 

 

Update on Layla 8/11

Yesterday was a pretty good day, our sweet girl has started to show interest in eating again! She took a bottle at several of her feeds and even though she didn't finish her bottle, she did take more than half of her required amount each time. She also nursed from mom for about 15 minute which was awesome! Eat little one, eat! Layla's bilirubin number dropped to <9 which means she gets a chance to show us her liver function off her lights. Here's to hoping she can keep it down!

I spent several hours with Layla doing skin to skin and snuggling. She was pretty smiley yesterday and although I know it's just a reflex, I think she was pretty happy all day long.

Layla got to hang out with dad last night again while he studied for several hours which makes me feel much better at night. Just knowing one of us is by her side is extremely comforting.

Update on Layla 8/10

Baby girl is has been in NICU for a week. It's been overwhelming to say the least because we were not given accurate information at first and I had my hopes up that she'd be leaving sooner than was ever possible. After I was discharged from the hospital, I didn't know how to think or function. I had been coming to visit Layla pretty frequently while I was in the hospital, and when I went back after one of her feedings the nurse discharged me and I had to leave right away.

At this point, two days after her birth, I hadn't been given any information about Layla, just that she was doing well with her bottle feeds and because she didn't need any oxygen I might be able to room in with her. None of her doctors had given me any information-- just the nurses.

I stopped by NICU on my way out the hospital to find out what was going on with Layla and they told me she wasn't close to rooming in with me. The nurses said Layla was moving to a less critical section of NICU, so that was good news. Don't get me wrong, I don't want Layla out of NICU until she's good and ready, but I was just confused because I felt like I hadn't been given any information. In my mind she was a healthy, 6-pound baby who could come home. My friends had just had babies weighing not much more at full-term, so why couldn't I just take her home?

The next day I showed up for her regularly scheduled 9:00 feeding but the nurse told me they had changed it to 8:00. Again, no one communicated this to me! I had asked when we left the night before if she'd be ready for me at 9:00 and they reassured me that Layla would remain on the schedule I had been following while I was in postpartum at the hospital. That crushed me when I found out someone else had fed her just 30 minutes before I arrived.

Layla's Doctor finally came to visit with me and he apologized that I had been led to believe she might room-in soon. He didn't give me a time estimate or anything, just a quick update on how she was doing. Her bilirubin count was a little high so she was put under lights as a precaution which is good-- because today, she's back under the lights since her numbers went up. She looks pretty adorable with her little eye mask on!

Layla is working so hard and gets exhausted when she feeds. She has a little feeding tube that is only used when she doesn't nurse with me long enough or when her bottle doesn't get finished. It's reassuring to know she gets her calories since preemies aren't supposed to lose any weight! This was confusing to me at first because I know that newborns typically lose weight and take about two weeks to regain their birthweight. I have to remember that if Layla were still in utero, she'd be gaining weight each day until her due date. She needs to gain weight and that's really her only goal. Yesterday she gained 31 grams, but today she's lost 25.

Every achievement she makes is such a high, but when I find out her jaundice hasn't improved or that she lost a little weight, I get really discouraged. I know she'll come home when she is ready and I wouldn't want to take her away from this excellent care.

Right now everything is like a roller coaster. The highs are high and the lows are low. I am going to try and post everyday with the highs so that I don't get discouraged.

Update 8/11: When I was typing this yesterday while Layla was under her lights for her tiny bit of jaundice, one of the NICU Helping Hands workers (I think she's a social worker) came in to see how I was doing. God definitely sent her my way. I began to cry because I was just so exhausted. She could tell I was past the point of exhaustion and took a minute to validate my feelings; she understood why I felt as if I needed to be by Layla's side every minute. However, she also helped me see that if I don't take care of myself, I might not be able to be by her side if I get a cold from a weakened immune system from not sleeping; I might not be able to visit her if I slip deeper into exhaustion and depression.

She explained her own experience with her babies in the NICU and that helped me trust her. She helped me set up a schedule for the next 24 hours that I felt good about and she made me promise her I would follow it. She told me to go home after Layla's next feeding (she is sooo tired and needs to stay under her lights so she is getting most of her feeds through her NG tube after we practice latching for a few minutes) and sleep. She told me not to come back last night, since Layla has plenty of my milk stored for her feeds. She said to send Greg in so that I knew Layla wasn't alone and so that her daddy could get some alone time with her. Although this was hard for me to do, I was able to take the night off and sleep. My final assignment was to only wake up for two pumping sessions since my supply looks pretty good and sleep in until I woke up on my own.

I did what was asked of me and I feel like I can survive today. Greg stayed with her for hours and hours last night while he studied and that made me feel so much better. I just called Layla's nurse for the day and she is up 15 grams!! Hooray! I will head in for her late morning feed and then spend as much time snuggling her until later this afternoon.

I am grateful for Layla's adoring father who just gushes over her. He always talks about the cute things she does and I am falling in love with Greg more than I ever imagined I could. He is my rock and although my hormones make me feel panicked he will not come back after his classes, I know he loves Layla and me more than anything.

I am grateful for the sweet nurse who answered the phone this morning when I called to let the know I would be in later. It is comforting to know that her nurse has such a sweet temperament and great bedside manner.

Today is a good day-- a new day.