One Step Forward, Two Steps Back

June 21, 2015 by Jaime S. G. ♥ 3 Comments

It’s funny how you can go through a whole day feeling so positive, only to have everything turned upside down by a single number. When I came in this morning we found out that Lyra had lost a little bit of weight. The doctor increased the amount of milk she is supposed to take and we moved on with our day. Throughout the day she did great. She was taking more orally than she did yesterday and she didn’t have any trouble keeping down the extra volume pumped in via her NG tube. Her personality was also coming back today today. She spent a long period of time awake and checking out the world. We spent much of the day just looking at each other and making faces. She even did a little tummy time in her crib. With all of these positive indicators, I decided to stay until she was weighed again. I was really excited. We had done everything right today and she looked great. And then the numbers came in….. 3.445 kg (7 lb. 9.2 oz). It is a full oz less than she weighed yesterday. She should be gaining an ounce per day, not losing it.

I just don’t understand. We are doing everything right. The surgery fixed the laryngomalacia. She is eating more AND keeping everything down. I am actually eating regular means and most of them have solid nutritional value, so my milk should be okay. I make sure to eat protein, fresh produce, and fats. Her reflux seems under control…. I just don’t get it. What are we doing wrong? She has to do two things to be able to come home: 1) Consistently eat and keep her meals down, 2) GAIN WEIGHT. With the NG tube we have #1 taken care of. I don’t know how we will fix #2. I don’t even want to go home tonight and see my apartment full of my baby’s things, only to know that I have no idea when she will be home again. I just want to be home and sit on my couch with my baby, husband, and my dog.

Living in the Hospital

June 19, 2015June 20, 2015 by Jaime S. G. ♥ 0 Leave a Comment

Living (at least part time) in the hospital is a unique experience. At this point, we still do not have an exact timeframe for when Lyra will get to come home. She continues to make great progress with feeding, but we are still having to utilize the NG tube. Here is what an average day looks like (starting around 12 AM).

1 AM: My alarm goes off telling me I need to pump
2 AM: I wake up and realize that I haven’t pumped. I stumble into the kictchen, grab a glass of water and the tools I need, put on my special special pumping bra, and hook myself up to be milked. While pumping I proceed to check Facebook, flip through endless tv channels, and play solitaire on my phone. This is all followed pouring my milk into freezer bags, cleaning all of my tools, and likely grabbing a small snack.
3 AM: Stumble back into bed
5 AM: My alarm goes off telling me it is time to get ready to go back to the hospital
6 AM: I wake up with my phone in my hand and realize that I need to get my butt out of bed
7 AM: Drive to Hospital
8 AM: Walk in and see this beautiful face

9 AM – 9 PM: Run through the following activities multiple times in no particular order
- Feed Lyra
- Feed Mommy
- Flip through the TV stations, decide nothing is on, turn on an audiobook, fall asleep
- Pump
- Clean pumping tools (does not always come directly after pumping because I seem to be incapable of focusing enough to finish a task)
- Talk to doctors
- Talk to nurses
- Change diapers
- Fall sound asleep
- Take pictures
- Poke at Lyra
- Start blog post (it normally takes me hours to finish it)
- Call Mom (aka Grandma)
- Take 2 hours to convince yourself it is okay to leave the hospital
10 PM: Arrive at home and eat “dinner”. Pump, clean tools, cuddle with husband, miss my dog, and feel guilty about not being at the hospital
11 PM: Crawl into bed

In other words, my days are long. It’s been 8 days so far for this hospital stay. Hopefully it won’t be much longer, but that all depends on my little one. Right now we are letting her take her time to get her feet under her.

Baby steps.

My Sister’s Wedding

June 18, 2015June 20, 2015 by Jaime S. G. ♥ 3 Comments

Sometimes I forget that the world keeps moving outside of the bubble I have been in. In fact, today is my sister’s wedding. She has had her own trials in life, and today she is marrying a wonderful man. Jason not only loves her deeply, he treats her children like they are his own and obviously cares for the rest of us. As an extra bonus, he has two beautiful little girls to add to the mix. We really are a “more the merrier” kind of family and we are so happy to have them officially join our crazy group.

Unfortunately, the wedding is in Hawaii and we can’t be there. In honor of the wedding (at least in my mind), Lyra is making major progress today! She is totally off oxygen and doing great with her oral feeds (aka drinking from a bottle).

Tonight, I have two things to celebrate. My baby is getting better, and we will be joining my family via FaceTime for my wonderful sister’s wedding. I am even dressing my little one in the dress she was going to wear if we had been able to go (pictures to follow tomorrow). I feel very blessed today.

Awake and Fussy and NO BREATHING TUBE!

June 17, 2015June 20, 2015 by Jaime S. G. ♥ 1 Comment

Today feels like progress. I came in this morning to find Lyra with just oxygen and her NG tube in. NO MORE BREATHING TUBE!!!! She is breathing on her own, totally alert and a little fussy. Fussy is good in this case. She is sucking on her binky because she is hungry! They also started to reduce the amount of fluid going through her IV and adding breastmilk to her NG tube. I am one happy Mamma. It looks like we are going to get to leave the PICU today and move to the regular floor. Now we just have to make a game plan for her eating. Once we have that, we will have a general idea of when we might go home.

Post Opp Photos

June 17, 2015June 20, 2015 by Jaime S. G. ♥ 0 Leave a Comment

Version 2

Some Days Are Harder Than Others

June 16, 2015June 20, 2015 by Jaime S. G. ♥ 2 Comments

Some days are truly harder than others. Yesterday I held Lyra for a good portion of the day. She was cuddly and sleepy and it was nice to have that time with her while we waited for surgery. This morning is tough though. Lyra is on the same size bed I slept on in the hospital, but she is only 7 pounds. Her tiny little body is almost hard to spot since the sheets are white and she is wrapped up in white blankets with white tape covering most of her exposed face. I can’t pick her up and I am not even sure how much I can touch her.

Surgery yesterday went well. They were able to trim the extra tissue and open her airway up. However, she did need help with her breathing during and after the procedure. This morning she is still on a ventilator. That is the reason there are so many monitors hooked up to her and why I can’t hold her. During surgery they also identified an additional abnormality that may be impacting her breathing. Today she is likely having an MRI to try to determine what is causing the problem. For now, I will just sit in the rocking chair watch the monitors.

Surgery it is…..

June 15, 2015June 20, 2015 by Jaime S. G. ♥ 1 Comment

Over the weekend Lyra’s eating deteriorated to the point where all she could tolerate was a constant feed via her NG tube. This morning the ENT doctors, my husband and I decided that it was time to move forward with surgery to correct the laryngomalacia. The procedure is called a supraglottoplasty (links below). She is currently in the operating room. It is a short procedure, but the wait is killing me. It’s impossibly hard to watch a doctor carry your tiny one away to have surgery. I am currently sitting staring at the door the doctor will walk out of.

She is just so tiny….

************************* UPDATE *************************

Lyra is out of surgery. It went well, but she is on a breathing tube for now. We will be in the PICU for at least a day.

Images from the Hospital

June 15, 2015June 20, 2015 by Jaime S. G. ♥ 0 Leave a Comment

It’s a Rough Day

June 14, 2015June 20, 2015 by Jaime S. G. ♥ 1 Comment

Today I feel hopeless. Over the last 36 (ish) hours, Lyra has had more and more trouble with feedings, despite the NG tube. In fact, she has totally thrown up the last two feedings. One happened in the middle of the NG feeding and the other happened just after the feeding finished. My husband and I feel defeated and frustrated. We are doing everything right, and getting nutrients into our baby girl continues to be so challenging. If I had the energy, I would cry. It’s just about time for another feeding and we don’t know what the game plan is. Are we going to try to feed her yet again just like we have been? It doesn’t seem logical. Obviously, what we are doing isn’t working. At least if she becomes dehydrated, we are already in the hospital.

The doctors think this complication has to do with her reflux. We are caught in this spiral where her reflux makes her laryngomalacia worse, which makes her reflux worse. She obviously doesn’t feel well, but she also acts like she is hungry. It’s heartbreaking to watch feedings start with her bright-eyed and eager, only to watch the feeding deteriorate to her obviously being in pain, and ending with her throwing up. The doctors seem to have some possible solutions, but there is no simple answer. It’s not an algebra equation where we plug-in “x” to get result “y”.

Right now, I am just exhausted in all possible ways. I spent the night here last night and barely slept. Although I have tried to take naps, there just never seems to by time for me to really sleep. I would go home, but she is being evaluated by a surgical team tomorrow morning, likely before 7am. I am scared I am going to be miss them if I go home to sleep. I try to be here for every evaluation by doctors and every shift change.

Hopefully tomorrow we get a solid road map for how to deal with the laryngomalacia.

Hopefully soon she will keep a full feed down.

Hopefully Mommy and Daddy with get some sleep.

Weekends in the Hospital

June 13, 2015June 20, 2015 by Jaime S. G. ♥ 1 Comment

Weekends in the hospital are quiet. Rounds are later with smaller groups, specialists typically don’t stop by, and (in my experience) not much changes in the game plan. My day today consists of feeding every three hours, working on some photos I took when she came home from the NICU the first time, and trying to take naps. I honestly don’t get much sleep, but at least I am eating a little better this time around.

Sometimes it is frustrating to be here. While I know that she is getting good care, I feel like I am kept from caring for my daughter sometimes. Feeding is a great example. Lyra only eats breast milk that I pump. At home I am the one who prepares everything. Here, I am dependent on waiting for the nurse to get my milk out a freezer and warm it up for me. If the nurse is busy, her feeding gets delayed. I get that nurses are taking care of more than one child, so sometimes things get pushed. But, I am just taking care of one child. Mine. If I could just warm up her bottle myself, it would make things a lot easier for all of us and make me feel like more of a parent. Also, I wish I knew where the supplies were for me. I have to put my milk in special bottles, but I produce a lot and go through them very quickly. I frequently have to ask the staff 2-3 times for new ones before someone remembers to bring them. I get why they don’t let anyone grab them, but that doesn’t mean I don’t wish that I could do it.

For right now, all I that can do is keep myself distracted, play with her when she is awake, and wait for the next feeding.