Home Sweet Holy $h!t We Are Exhausted

July 1, 2015July 1, 2015 by Jaime S. G. ♥ 6 Comments

Don’t get my wrong, being home is great! I love not having to drive 45 min. to see my baby. I love being able to take a nap without a doctor or nurse coming into the room. I love not having an alarm go off because managed to a lead off her chest. I love not eating cafeteria food all of the time. But just because I am home does NOT mean that I get anymore sleep. Her feeding schedule is tough and very involved. Here is what my/our days look like:

12-1 AM: Mark feeds her (yes, feeding takes an hour)
2:20 – 3 AM: My annoying alarm goes off. I pump while I blog, then I get ready for the 3 AM feeding
3-4 AM: I feed Lyra
5:40 AM: My annoying alarm goes off. I start to warm up a bottle from milk I pumped at 3 AM. Then I re-set the alarm for 6 AM and pass back out.
6-7 AM: My alarm goes off and I used to pretend that I was going to do this feeding because Mark has to get ready for work…. I don’t pretend anymore. Mark does this feeding.
8:20 – 9 AM: My alarm goes off and I debate if I REALLY need to get out of bed yet. The answer is always “yes”. So, I get up and pump and get ready for the next next feeding. Sometimes I even eat breakfast while I am pumping during this round.
9 AM – 10 AM: Feed Lyra and give her the multivitamin (that causes her to spit up half of the time) and her inhaler (this is just for a few more days post opp)
10 – 11 AM: This is when Lyra normally likes to be awake and play. If I have not had breakfast by this point, it is a lost cause until after the noon feeding.
11 AM: Yet another alarm goes off. Time for Lyra to take her Prevacid!
12 – 1 PM: Feed Lyra
1 – 2 PM: This is my best chance to get something done. If she is still awake, we play for a bit, but normally she falls asleep. I also normally try to eat something at this stage.
2 – 3 PM: Pump and get ready for the next feed.
2:50 PM: Normally Mark walks in the door from work. The angles sing, the baby smiles to her daddy, and I throw a little party in my head.
3 – 4 PM: If Mark is home, he feeds her and I pass out in the bedroom. If he isn’t, I feed her and try not to fall asleep while doing so.
4 – 5:30 ish PM: Lyra and I pass out together in the bedroom. If Mark is home, he finishes up his work in the living room.
6 ish – 7 PM: *Sometimes Lyra is hungry a little early for this feeding*. If Mark doesn’t have training her does the whole feeding while “cook” dinner. “Cooking” is a term I use very loosely. Sometimes it means order food for delivery. Sometimes it means I throw something small in the oven. Rarely does it mean using pots and pans. If Mark is training, I quickly eat dinner (read “throw something in a bowl and hope it is filling enough”)
7 PM – 8 PM: Play with Lyra if she is awake
8 PM – 9 PM: Pump and get ready for the next feeding
9 PM – 10 PM: One of us feeds Lyra. It really depends on the day and what we have going on. However, I always go to bed after this feeding and Mark often lays with her on the couch to catch a few Z’s.
11 PM: Lyra gets her meds again and we start the whole thing from the top.

There is no “weekend” schedule. There is no easier way to do it. This is what our daughter needs, so this is what we do. It is just….. exhausting. In three weeks we will re-evaluate with the doctor and see if she has gained enough weight at that point. If she has, we might be able to modify things a little. Until then, this is what we will do!

Lyra had rolled onto her side while I was pumping. Tyke was making sure she didn’t roll any more.

****Why it takes an hour to feed Lyra: First we change her. Every time. This helps wake her up if she was sleeping. Next, she takes what she can by mouth from the bottle. She has 20-30 min to do this, but she honestly is normally done after 10-15. Eating is hard and exhausting for her. She normally only takes about an ounce (30 mL- 40 mL) and than she is done. If we try to push it (and we have), she pukes. After that, we have to prepare the tools we need to feed her via the NG tube. We then check its placement, flush it, and feed her. She gets about 2mL/min. So, if she only takes 30 mL, we have to give 55 mL via the NG tube. This takes us close to 30 min. After that we have to clean the bottle and all of the tools used in the NG feed. All in all, it takes about an hour.****

Adjusting to being Home

June 25, 2015June 25, 2015 by Jaime S. G. ♥ 1 Comment

So, Lyra is finally home. The sent us home with an NG tube so that we don’t have to worry about her not taking her whole bottle. While she has been making progress with eating, she still can’t seem to take the whole thing by mouth. She also still throws up occasionally. I bet that the occasional throwing up wouldn’t both most parents, but for my husband and I, it makes both of us panic. We are both truly traumatized by watching her throw up feed and after feed. Some days, as we fed her, we would silently pray that anything we gave her stayed down. While she now only throws up once every few days, it still makes my heart sink into my stomach. I can’t help but think, “are we going to have to go back to the hospital? Is she going to be okay? What did I do wrong this time?”. I just want my baby girl continue to grow. She is over a month old and still fits into newborn clothing. While this may be normal for premies, she was full term. At least when she was weighed before we left the hospital she has finally crossed into the 8lb range. Maybe being home won’t feel so terrifying one day. For now, my husband and I are just doing the best we can to keep our cool.

First Morning Away

June 23, 2015June 23, 2015 by Jaime S. G. ♥ 3 Comments

The thing I keep having to remind myself while Lyra is in the hospital is that I can’t take care of her if I don’t take care of myself. So, this morning I am going to my 6 week follow-up after giving birth. It means that I will miss rounds for the first time in the 21 days she has been in Children’s Hospital. My husband is there, but it is incredibly tough for me to not be in the room talking to the doctors. However, I know that it is very important to be checked out by the doctor post labor. I may not always be the best at taking care of myself. I can’t bring myself to stay home and go back to Muay Thai. I don’t have time to go to the gym and make rounds in the morning, and it is normally closed when I get home at night. Once I am in the hospital, I have found it impossible to leave her to go for a run/walk in the are. Plus, it is beyond hot and humid right now. So, the least I can do is go see my doctor.

So, my morning has been surreal. I am watching last nights episode of So You Think You Can Dance, drinking coffee, and eating breakfast. I feel kind of like I did before I had Lyra, but with this anxiety bubbling just under the surface. Honestly, I am trying to just maintain my cool and not say “screw it” and head out to the hospital. I just keep reminding myself that this is what is best for my baby. Hopefully my husband calls soon with additional information from the doctors.

Blowing my husband a kiss after feeding the baby

Truly Humbled

June 22, 2015June 23, 2015 by Jaime S. G. ♥ 3 Comments

Todays post is more of that thank you. I am truly humbled by the amount of support we have received from friends, family, and even strangers. My family has been incredibly supportive, despite the fact that they can not always physically be here (the live on the other side of the country). Our friends, both locally and otherwise, have also been wonderful. Two of our friends have been taking care of our dog (our first born) for over a week. We asked them to watch him for one night and they have taken care of him ever since. The words of encouragement and offers to help out with anything/everything have been greatly appreciated. My husband and I are not always the best at accepting (or asking for) help, but we have learned to embrace what has been offered. Beyond the friends and family, I am humbled by those who I do not even know who have reached out and shared their stories and kind words. All of this reminds us that, although we are experiencing challenges we could have never prepared for, we are blessed. From the bottom of my heart, thank you all.

Tyke and Lyra when we first brought her home

Our first Father’s Day

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.

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.

Learning To Thrive

Tag: failure to thrive