October 3rd, 2024

Danielle Anderson:

Here is the TLDR version: I was diagnosed with preeclampsia, was admitted to the hospital at 25 weeks, had Olivia four days later and she is now a micro preemie in the NICU.

I was having an otherwise normal pregnancy. Excited for the next chapter in our story to grow our little family. But on September 18th, that all changed. The day before I had felt lightheaded all day and had a headache that never went away. I woke up on the 18th still feeling the same. I reached out to my OB and she instructed me to go to Labor and Delivery. I was surprised because I thought she would just ask me to come to her office to get checked out. I thought, well, better to be safe than sorry.

I got checked in and they immediately found that I had a lot of protein in my urine and my blood pressure was through the roof. They diagnosed me with severe preeclampsia, which shocked me. I have always had great blood pressure and I had just seen my OB three weeks ago, and everything was fine. They admitted me to the hospital and everything went into hyper-mode. I was being given medication to get my blood pressure to come down, I was given magnesium to protect my brain and the baby in case I had seizure. And I was given a steroid shot to help Olivia’s lungs develop a little more in case she had to come early.

My OB came in and let me know they were going to transfer me to a different hospital because their NICU was better for 25 weekers. I was soon in an ambulance heading to what would be my home for the next 11 days.

Our goal was to have Olivia bake for as long as we could. But on 9/22, my health was getting worse and Olivia’s stats at the time were dipping. She was stable, but I made the call that it was time because I would rather her come into the world when she was stable rather than an emergency. So, I got prepped for surgery. Everything about this was scary. Prior to this I had never been in the hospital for myself. What was great about the surgery was I was able to have two people in there with me. This allowed for my husband, Jeremy, to stay with Olivia and my mom to stay with me. Having a C-section is a surreal experience. Being awake the entire time and then not being able to feel your body from the chest down was a weird feeling. Before I knew it, the doctor was singing “Happy Birthday” while he took Olivia out. All I cared about was if she was breathing, which she was, but I didn’t get a chance to see her before they whisked her away. This is not what my plan was. None of this was.

I got a chance to see her briefly after being in recovery. It was so hard seeing her connected to wires and machines. And also not being able to touch her. She was so tiny. Almost 1 pound 4oz and 10 inches. Seeing her like this, the guilt came creeping in. What could I have done differently? It was my fault she was here. Why is this happening to us? Even though every nurse, family, and friend would tell me differently, it’s hard to get those feelings and thoughts to go away. I felt so helpless. There is nothing I can do to make her better.

For the next week, I stayed in the hospital while the doctors worked to figure out the best concoction to stabilize my blood pressure. While being at the hospital was not my favorite, it was so nice to be so close to Olivia, where we could get to her in less than five minutes any time we wanted. So when it came time for me to go home on 9/28, it was bittersweet. I was thrilled to go home and take a shower without a glove and sleep in my own bed. But leaving Olivia was the hardest part. We do not live near the hospital. At times it can take almost an hour to get there from our home. Which means realistically we will only be able to go see her once a day.

They tell you when you have a baby in the NICU, that your time there is going to be roller coaster. You will take one step forward and then two steps back. But even with this knowledge it doesn’t make it any easier. Worrying about every lab result, every xray, did she gain or lose weight, is she able to poop, what her oxygen and CO2 levels are at. I could go on and on. I have really just learned to survive in a constant state of fear. Which I know every mom feels to some level, even if their child is not in the NICU, but I think it is heightened for preemie parents.

My sister and mom have been sending out updates about me and Olivia to all of our support peeps. There are many of you out there who have been praying for us and sending us good vibes from afar. We are so appreciative of each of you and we have felt the love. Please continue to keep us in your prayers, we need all that we can get.

I am not trying to push this on anyone, but people have been texting asking if there is anything they can do, to let them know. I have amazing friends who have set up some ways to help us right now. One way is to provide dinner for us. We have a million things to worry about, as I said, but having dinner covered helps take one thing off our plate. The other is contributing to a gas fund. Like I said earlier, we are not close to the hospital, so going there everyday eats up a lot of gas. Do not feel obligated to donate. We are so appreciative of the prayers and the messages we have received. They help encourage us and keep us going. If you would like to donate, you can check out this site: https://mealtrain.com/m4q6z9.

I am going to use this blog to provide updates on how Olivia and I are doing, so you should soon see the regular updates from my sister and mom begin to fall off, unless something drastic happens and I am not able to update the blog.

Update on me: I am doing well. I am really healing well from the c-section, which is a real blessing and one less thing to worry about. I am still on blood pressure medication but they did lower it this week.

Update on Olivia: She is stable. She is on a ventilator and a jet ventilator to help her little lungs. She is taking her feedings well. She is gaining weight, pooping like a champ, and is so feisty, sometimes too much for her own good. She loves to use her hands, so she is tapping into her Italian side already And yesterday she found her mouth and was sucking her finger. It was so cute.

Oct. 5th, 2024

We had no idea when heading to the hospital that today would be so special. We were about 10 minutes away when we got a call from the NICU. When you see that number on your phone, you don’t know if it is just an update or if something is wrong. This time it was the doctor providing an update and then letting us know that she approved us for a skin to skin session. We were shocked because Olivia is still on two ventilators, but so overwhelmed with joy that we both immediately broke into tears.

It took two nurses and a respiratory therapist to move her to me with all the wires and tubes, but once she was there it was perfection. Literal best day ever! She did so well, I got to hold her for an hour. They say that many times at this point many babies won’t make the whole hour. I can’t wait to be able to do it again and to see Jer hold her.

She is continuing to be stable on the ventilators, but the major thing we are hoping she improves on is her sodium and CO2 levels. Once her CO2 is better she can get taken off the jet ventilator and just be on one. So, if you pray, those are our specific requests.

At the end of Liv’s updates I will provide her important dates:

Age: 13 days

Gestation: 27 weeks and 3 days

Quick update on me: I am healing well from the surgery and my blood pressure is still stable with the reduced medication. Unless anything crazy happens, I am planning on going back to work soon. I want to save as much time as I can for when Olivia comes home.

Oct. 7th, 2024

Today I got to visit our little Olivia twice. I wish I could do that everyday.

Funny story from the day: Three times a day the nurses do what is called, “Cares.” The main things they do during this time are take the temperature of the baby, change the diaper, rotate the baby, measure, the tummy, and provide colostrum care (giving the baby colostrum by mouth with a q-tip). The parents can help with Cares. Jeremy and I have done all of it, except the rotating and measuring. The nurse and respiratory therapist usually handle this. Today I changed Olivia’s diaper. Her poops could be described as soft serve peanut butter, lol. And it was a decent size for her little body. After I finished they still had to rotate her and suction out any fluids from her lines. By the time they were done, she had already pooped again and it was even bigger! So funny! I let the nurse change the second one. We joke that she did it on purpose because they were messing with her so much. She is a diva and does not like to be messed with. But who can blame her?

A few updates:

Yesterday they took Olivia off the jet ventilator and had her on a conventional ventilator. But this morning her numbers were not as good and they decided to put her back on the jet.

Her glucose was low, so they are giving her fluids through an IV again.

Olivia’s PDA is large which is contributing to a heart murmur and lung issues, so they have started giving her Tylenol to help close it up, or at least make it smaller. In case you don’t know, a PDA is a small hole or opening in a baby’s heart that allows blood to flow between the aorta and pulmonary arteries. This opening normally closes within a few days after birth, but if it doesn’t, it can cause too much blood to flow to the lungs.

Her chest x-ray is still hazy, so hoping all the adjustments they are making will help.

She is stable and doing well with the treatments they are giving her.

She is doing well with her feedings, gaining weight, and pooping like a champ still.

Liv’s important dates:

Age: 15 days

Gestation: 27 weeks and 5 days

Update on me: Yesterday my blood pressure dipped a little low, so I reached out to my doctor and they took me off one of the blood pressure meds I was taking. Hoping I can be off the remaining one soon.

Oct. 8th, 2024

Well, I provided an update last night and then this morning there were even more changes made. Today has been one of the harder days and I know there will be more. I woke up and looked at Olivia’s latest lab results. Her CO2 was worse and her chest x-ray was worse as well. Later in the morning Olivia’s doctor called and let me know what the plan was:

Since her CO2 was worse, they had to up her support on the ventilators.

Her hemoglobin was still low, so they were going to do an other blood transfusion (#4).

The results from her chest x-ray could indicate an infection starting like pneumonia. They were going to run some tests to see if that is the case (it will take 3-4 days to get these results), but they are going to be cautious and start antibiotics now.

This was a lot to take in. All I wanted to do was get to her. Jeremy decided to leave work and go with me. It was definitely a harder visit; seeing even more tubes and wires around her. But she was still her spunky self. I was there for over four hours. I just wanted to be near her.

In the midst of the stress from the day, there were some good moments:

I got to raise her out of her bed while they changed the pillow case.

I got to give her a kiss on her head.

I changed two of her diapers.

Having IVs on both her hands makes it look like she has little boxing gloves on.

She gained weight.

We got her little footprints.

We so appreciate all the prayers and good vibes. I hope the info I am giving helps provide specifics about what to pray for.

Liv’s dates:

Age: 16 days

Gestation: 27 weeks and 6 days

Oct. 12th, 2024

I know it has been a few days since I have done an update. There has been a lot going on.

I went back to work this week. And while my body is feeling better from the surgery and the preeclampsia, it has still been exhausting. Our new routine for the week is wake up, work, eat dinner, go to the hospital, come home, and go to bed. Hopefully, we will get used to it, but it has been an adjustment to say the least.

The emotional toll has been heavy the last couple days. Here are the updates on Olivia:

Olivia has two infections. One in her blood and a UTI. They were both found very early and as I said in my previous post, she has been on antibiotics and will continue for another week or so.

Olivia had blood in two of her stools. They took her off her feedings and put her back on the IV nutrition and have been taking x-rays of her abdomen to see if they can see any issues. Everything has been clear, so they are still trying to figure out what the cause of the blood is. We are hoping she can get back on my milk soon.

While the above has been hard to deal with, there have been some positives:

Olivia has been on Tylenol for 5 days to close her PDA. Today on her Echo it showed no evidence of the PDA. So, the Tylenol worked.

On Thursday they needed to do a lumbar puncture to see if there was any infection in her spinal fluid. She did well during the procedure and there were no findings of infection there.

She is still her spunky self and loves being read to and holding my finger. Below is a great photo Jeremy got.

Olivia’s Dates:

Age: 20 days

Gestation 28 weeks and 3 days

Oct. 20th, 2024

First, I apologize for the lack of updates. My intentions are to do updates more frequently but the exhaustion has set in, and at the end of the day Jeremy and I crash. But I will try to be better because I know we have so many family and friends who are invested in our story and are praying for Olivia and us.

Hanging out in a hospital watching our daughter fight for every breath she takes is not what we had planned for our first wedding anniversary, but here we are. We did get to go out to one of our favorite Italian restaurants for dinner, The Place. If you have not been there, we highly recommend. There is one in Roseville and one in Placerville.

Here are the updates for Olivia:

Olivia finished her antibiotics for her two infections and they seemed to have worked.

They restarted her feedings with my milk, which is so great. There are so many benefits for her getting my milk, so we are excited about that.

Last time we reported that her PDA had closed. Well, it reopened. This is common, and we were warned that this could happen. They wanted to wait until she was done with her antibiotics and the infections had resolved before they started a second round of Tylenol. She began another round yesterday and that should be done on Tuesday, which will be one month for her! Then we will get another echo to see if it worked.

Today they swabbed her to run a test for Cytomegalovirus (CMV). This is a common virus for preemies, but it can have severe impacts on babies. We will not get the results for a few days, so big prayers that this comes back negative.

Olivia will also get another brain scan in the next week or so to check for any brain bleeds.

Olivia is almost 2 pounds!!! Hopefully she will be twice her birth weight soon.

She is still requiring a moderate amount of oxygen and still on the jet ventilator. So our next goal is that her little lungs get stronger and that she is able to get down into the low 30s for her support (she has been in the 50s and 60s). Once she gets into the low 30s then we can do skin to skin again.

She is still spunky, getting stronger each day. Sometimes too much for her own good. She is moving her head more and trying to grab at her tubes which is not good. But it is good that she is feisty and not lethargic.

Olivia’s Dates:

Age: 28 days

Gestation: 29 weeks and 4 days

Oct. 24th, 2024

I am going to try and keep this short and sweet. The photo above is me reading to Olivia. It is one of our favorite things to do. We have started a small library at the hospital. It’s hard to pass up the book aisle in Target and not get her a new book.

Here are the updates on Olivia:

Earlier this week Olivia had a fever and they thought she may have an infection again, so they did all the tests and everything came back negative. Her temp went back down, but we don’t know why it went up for that short time.

Her last round of Tylenol for the PDA finished. It didn’t close it, but it went from large to moderate. They are going to see if it will finish closing on its own. She will get another echo in three weeks.

Her CMV test came back negative!

Her brain scan came back negative for brain bleeds!

She weighs 2lbs 2oz! Six more ounces and she will be twice her birth weight.

Her oxygen assistance is in the same place, but hopefully as she grows, her lungs will get stronger and we can wean more.

We had a couple of firsts!

We got to give her a “bath.” It was more like a wipe down, but still amazing.

I got to hold her in my hands briefly while they weighed her and when they made her bed.

She has spent over a month in the NICU. Time has flown by!

Olivia’s Dates:

Age: 32 days

Gestation: 30 weeks and 1 day

Quick update on me. I have been dealing with some lightheadedness since Saturday. I reached out to my doctors but no one seemed alarmed to get back to me quickly. My blood pressure was still doing fine. This morning I noticed that my left ankle and calf were swollen. I went to work, but it wasn’t getting better, so we decided to go to the emergency room. We were worried it may be a blood clot. We got in fairly quickly, they did an ultrasound, ran some labs, and everything came back clear. Found out, swelling after giving birth is common especially if you eat salty foods. So I need to try to avoid eating In n Out at 10:30 PM. Easier said than done when spending our evenings with our baby girl. But I will definitely be more cognizant of it and putting my feet up as much as possible.

Oct. 26th, 2024

This will be a quick update, since I did one a couple of days ago and not much has changed:

Olivia is now 2lbs4oz

She is doing a little better on her oxygen, but they would like to wean her more and get her off the jet ventilator.

She started taking a steroid today to try and help her lungs get stronger.

Olivia’s Dates:

Age: 34 days

Gestation: 30 weeks and 3 days

Oct. 28th, 2024

The last couple of days have been tough for Olivia, and then today hit us hard:

This morning I talked to the doctor and they said they were going to give Olivia another blood transfusion. They are getting more spaced out, which is good. Her last one was 10 days ago.

Over the last couple of days her CO2 has been high and has not been coming down so they decided that they were going to replace her intubation tube. She still had the smallest one and she has grown so they wanted to give her a bigger one. With the smaller one, there is more chance of it plugging and having more secretions around it.

At around noon I was in the hospital lobby checking in to go up to the NICU, when I got another call from the doctor. She informed me they had a hard time getting the tube out because of all the gunk (my words, not hers). But because of that her heart actually stopped and they had to do chest compressions for a minute and a half. That stopped me in my tracks. Once I got up to her pod they said that the minute and a half was a short amount of time so there shouldn’t be any ramifications from it. Hearing that Olivia went through that was one of our hardest moments yet. We just wanted to hold her and let her know it was going to all be OK, but we couldn’t do that. The best we could do is be by her side, talk to her, and give her time to recover, rest, and heal. It was very scary but we trying to focus on the positive.

She has been doing much better with the new tube. The CO2 has gone down, they have lowered the jet settings, and they even got her oxygen down into the high 20s and low 30s. The new blood has kicked in and she is back to being her feisty self. Prayers that everything keeps trending in the positive direction and if it does, they may try and take her off the jet tomorrow which means we are closer to doing skin to skin again.

Being a parent of a baby in the NICU, and a micro preemie at that, is hard. Every hour you have a different emotion. But we are so thankful to all of you for supporting us. We know we have hundreds praying and sending up good vibes for our little family and especially for Olivia. We can feel it. So, keep it up

Olivia’s Dates:

Age: 36 days

Gestation: 30 weeks and 5 days

Oct. 31st, 2024

Since our last update, a few things have happened. At the end of our post we said that she was doing better and that lasted for the rest of that day, but overnight her numbers began to get worse and she was needing more support again. The doctors ordered an xray and labs because they had a hunch she may have an infection. They did a blood culture and a culture of the secretions from her lungs. Before the results even came back they started her on two antibiotics and took her off the steroid. We know infections are common in preemies, but she had already had two, and we were not ready for another. The blood culture came back negative which is great. But the one from her lungs came back as positive. Not what we wanted to hear, but it does explain why she was having such a hard time.

The antibiotics worked pretty quickly. She reacted well to them and you could see a difference within 24hrs from when they were started. Today they took her off one of the antibiotics since it was for the possible blood infection. She will be on the one that is left for seven more days.

This morning they took another chest xray and it looks better than the previous. Her labs have all been good, she is lower on the oxygen and they have been able to lower her jet settings. After a few hard days, it has been nice to have a couple of days with steps in a positive direction.

She is still doing great on her feeds and blowing out diapers like a champ. Our “Little Pumpkin” is the cutest and has wooed many of the nurses, as to where even when one of them who has had her is not assigned to her, they will come by and check on her to see how she is doing and to say, “Hello.” She really is surrounded by the best and we are so thankful for all of the nurses, respiratory therapists, and doctors who have worked with her.

Nov. 3rd, 2024

Today we went the hospital in the afternoon. We were excited to see one of our primary nurses, Courtney. When we got there, Olivia was doing well. The doctor came in to give us our daily update and answer any questions we may have. At the end I decided to ask a question I knew the answer to already, “Are we still waiting to do skin-to-skin until after she is off the jet ventilator?” Before the doctor could answer, Courtney said “We are going to try today at 3:15. I didn’t have a chance to tell you yet, but we wanted to surprise you.” I immediately began to cry. It has been 29 days since I was able to hold her last and this is only the second time in the six weeks of her little life.

3:15 could not come soon enough. We would start with 30min and see how she tolerated it and then if it all went well, we could try and go longer. I was confident she would do well because last time she did great. They settled her on my chest and it was heaven for an hour. I would have stayed there forever. She of course did amazing and we couldn’t say thank you enough to Courtney and our respiratory therapist for the day, Beth, for making it happen.

Here are some updates on Olivia:

She is almost done with her round of antibiotics for pneumonia. They have been working and on her chest xrays you can see a difference.

She has pulmonary edema and they are giving her a diuretic to see if it will help it. So far it hasn’t shown a big difference. So tomorrow we may discuss what other options there are.

They have been able to lower her jet settings, so crossing our fingers that the support of the jet continues to decline.

Her oxygen support has been between the 30s and low 50s. Mostly in the 40s.

She has been blowing out diapers, sometimes three in one changing. And we appreciate that she has saved those diapers for the nurses and not us.

She has gained more weight…and she has more than doubled her birth weight. She is now 2lbs 9oz! She is getting so big and we are so proud of her.

Lil’ Liv’s Dates:

Age: 41 days

Gestation: 31 weeks and 4 days

Nov. 9th, 2024

A lot has happened in the last week. The rollercoaster of the NICU has continued. Let’s jump in!

On Tuesday Olivia began not doing well. She was still on the antibiotics but things were not getting better. Her CO2 was high, she had a fever, her heart rate was high, and she was needing 85% oxygen support. Needless to say, Tuesday night we were calling every hour to check on her, praying things would improve. By about 2AM on Wednesday she was doing better. Her CO2 was back to normal range, her temp was good, her hear rate had lowered, and she was at 50% oxygen. We are unsure of what caused the issues, but it could have been influenced by her being hot from the isolette.

On Thursday, the antibiotics were wrapping up and we were not seeing the improvement on her oxygen support that we were hoping for. The x-rays also still showed fluid in her lungs. They decided to test to see if the pneumonia had cleared and if she had any other respiratory viruses. Everything came back negative. So with her being cleared of the infection, the doctors suggested we start a ten day regimen of steroids to try and strengthen her lungs. After only one dose we started to see some improvements.

Friday, she was doing well. I got to the hospital and we were just hanging out with one of our favorite nurses, Erin. I knew a new baby was coming into our pod soon, and at some point I may have to step out while they got the baby settled. Around 6PM, the baby came in. I tried not to look to allow for privacy, but overheard that he was a micro-preemie like Olivia. I saw the dad following behind closely to the bed as they settled him in and began to get him all set up. One of the nurses spoke to the dad and told him he could get a pic so he could show mom and and their family. What I was not expecting from myself was to lose it emotionally. I tried to hide in our little corner behind a curtain and not show anyone I was upset. I began to think about how this is what happened with Olivia and Jeremy. It made me so sad. And then thinking about what this mom is going through, remembering what I went through. So confused and worried. It was too much. So, when they told me I had to leave the room and it was going to take an hour before we could come back, I was happy and sad. Happy to leave that situation, but sad to leave Livy. To add to the chaos, Verizon phones are having issues in the hospital. Jeremy was meeting me there and hadn’t arrived yet, and I was not able to get a hold of him. Once I got downstairs, my service was back and he was just getting to the hospital, so we decided to grab dinner. Out of all the places to choose we decided to go to Iron Horse Tavern. We randomly ran into our friends The Westbrooks. It was so good to see them and really perfect timing with all the chaos that had happened. We visited on the sidewalk and then headed to eat. We finally made it back to the hospital around 9. We unfortunately missed Cares, but got to see our girl and read her some bedtime stories.

Today, we headed to the hospital and when we got there Olivia was still doing well. It’s so nice to have a couple of positive days in a row. Her oxygen support has continued to stay down, as well as her CO2, and they have been able to wean her down on the jet. This has happened before, so we are being cautiously optimistic that she is turning a corner and heading in a positive direction. On top of that, I got to hold her again. This time for over two hours! It was perfection. For a period of time she was awake and alert, looking at me, and then she fell asleep in my arms and I didn’t want it to end. Looking forward to this happening more as her health improves.

A couple of other highlights:

Earlier this week, Olivia had her first eye exam and it went well. Everything is looking good so far. They will examine her eyes every two weeks (or every week if they see concern), until we leave the NICU.

Livy is gaining some weight! As of last night she was 2lbs 12.6oz! So, in the next few days she could be 3lbs! Our little girl is growing.

Lil’ Liv’s Dates:

Age: 47 days

Gestation: 32 weeks and 3 days

Nov. 11th, 2024

Today was the best day ever for Jer. He got to hold our sweet Olivia for the first time and they bonded for over two hours! It was such a sweet moment, as we looked at each other with tears in our eyes as Livy looked up at her Daddy.

We also have a few updates:

Olivia has still been doing well, so today they moved her off the jet ventilator and she is just on the conventional ventilator. She is adjusting to it great.

The next steps are to slowly wean her on the ventilator to get her on the CPAP (Bubbles) machine. This machine is where she would breathe on her own, but get oxygen support through her nose, so she would be extubated.

We are excited for her positive strides, but always know there is a possibility she could go back, especially with being on a steroid. After she comes off it, she may not be able to keep up with the changes. But we are going to continue the positive vibes and cheering our Lil’ Liv on.

Her latest xray still showed haziness. It is going to take time for them to clear.

She is so close to 3 lbs! 2lbs and 15.9oz to be exact.

And the nurse and respiratory therapist found 10 chest hairs stuck on Olivia after being held by her Daddy. We have a tally on our board going in case anymore are found throughout the night.

Lil’ Liv’s Dates:

50 days

Gestation: 32 weeks and 5 days.

Nov. 13th, 2024

Today has been an exhausting day for everyone. My last update talked about Olivia being on the conventional ventilator. Well, today was the day they decided to extubate her. After what happened last time when they removed her tube, we wanted to be there. To add to my stress, I found out we did not have one of our primary nurses today. It made me so worried to not have someone that knew her well on such an important day.

I got to the hospital just in time to be there for the extubation and Jeremy arrived shortly thereafter. It was a little chaotic, but Olivia fought to be stable. She is still on the bubble machine as I am typing this at her bedside. She has had more “events” while on the bubbles, where her heart rate drops. She did not have as many when she was on the ventilator. She does come back up on her own fairly quickly most of the time, just like she does when her oxygen drops because of her PDA.

The nurse she had today turned out to be great of course. We haven’t had a bad one. And the respiratory therapist was one that we knew well, so that made us feel better also. To add to the crazy day, they decided to move her to a different pod. We knew this would happen eventually, but we were not expecting it to be on a day where so much was going on already. We will miss our old spot because that’s where we have been and lots of firsts and memories happened there, but our new spot is pretty nice. It is a lot roomier and has a much better view.

As I type this, exhaustion is hitting and thinking of leaving her is hard. Not sure how I am going to handle that tonight honestly.

If you are a praying person, the main prayer is for her to get better at breathing on her own on the bubble machine and not have has an many episodes. Her stamina is not high, so she could be intubated again. She is also still on the steroid, so I am fearful that, if she is able to stay on the bubbles, as they wean her off of the steroid and it stops working, that she will not be able to sustain being on the bubble machine and will have to be intubated again that way.

There are so many variables and unfortunately there is no magic wand to make it all better. Patience is what we have to learn with our Little Olivia. It is all on her time.

Nov. 15th, 2024

Last night I was typing up a whole different blog. When I left the hospital around 10PM she was doing OK. She was needing a little more oxygen support, but nothing crazy.

After I left, she began to have more labored breathing, needing even more oxygen support, and her CO2 was creeping. At around 3AM, the doctor decided, while she still had some energy left in the tank, that it would be better to intubate her again. Unfortunately, Olivia was not in the mood and it took them over 45 minutes and four tries to get the tube back in her.

Lil’ Liv lasted almost two days on the bubble machine. While it is disappointing that she had to be intubated again, there are positives. She was able to have almost two days off of a ventilator. Anytime off the vent is good. As of right now, she is still only on the conventional vent, so no more jet, which is great.

Jeremy and I stayed with Olivia all day. It has been a long week and Olivia has gone through a lot, so we wanted to be there in case anything happened. We are so thankful for both of our jobs understanding our situation and allowing us the flexibility when we need to be with our daughter.

Our new pod was very busy today. There was one baby getting discharged, one going in for surgery and a 26 week old addition. Jeremy and I left to grab lunch, thinking we would be gone while the new baby was brought into the pod, but when we got there the baby was just arriving. They asked us to go to the waiting room for a little bit. As we were walking out the baby passed us in the hall with the dad following behind. Jeremy and I were both hit with emotions, remembering that day for us only 54 days ago. It seems like it’s been a long time but also like it was yesterday.

The highlight of the day was getting two hours of snuggle time with Olivia this afternoon. It was so serene and calming for both of us. Her vitals were perfect almost the entire time. Jeremy also changed Olivia’s diaper. Love watching him in those Daddy moments.

Lil’ Liv’s Numbers:

54 days old

Gestation: 33 weeks and 2 days

Weight: 3lbs 1.7oz

Nov. 18th, 2024

Let’s jump in with the Olivia updates:

Liv has had a good three days. She has been doing really well on the ventilator. They have been able to wean her rates and pressures which is great.

She had an eye exam on Saturday and it well. Everything is looking good and they will do the next exam in three weeks.

I had my first shower on Saturday. My mom and sister did a great job. It was so beautiful, the food was great, and I loved visiting with everyone. Definitely felt the love and Livy was spoiled.

On Saturday night, Nonna visited Olivia and got to hold her for the first time. It was a special time. She can’t wait to do it again.

She got another blood transfusion yesterday. It had been two weeks since her last one.

Tonight Liv wore her first outfit It is a cute little preemie onesie.

Her feeds are still going well, all her labs were good this morning and she is still pooping like a champ.

Lil’ Liv’s Numbers:

57 Days Old

Gestation: 33 weeks and 5 days

Weight: 3lbs 6.7 oz

Nov. 19th, 2024

Last night when I called for my 4 AM check they had to change Olivia’s pressure settings because her CO2 was going up and she was needing more oxygen support. She was in the 60s for her support, which is higher than her norm. When I called in the morning after the shift change, her CO2 was still not doing well and her oxygen support was still high. For most of the day it was discouraging. She was not improving, she just wanted to sleep and wasn’t really loving being touched. We had originally planned for today to be a day for Jeremy to hold Olivia, but that was not going to happen.

We headed down to the hospital and I was feeling somewhat sad about where Liv was at and the situation, but when we got there we saw that her oxygen was down into the 40s! Our nurse, respiratory therapist, and doctor decided to change some settings on the vent (it’s a little complicated so I am not going to try and explain it here), and she was liking it. Her CO2 was stabilizing and she was even doing well while lying on her “bad side.”

We got to do Cares and she did so well. She even opened her eyes, which was so nice to see because for most of the day, on the camera, she had her eyes closed. And she gained weight! We read her a couple of new books and then we called it a night.

Hoping that tonight is a good night for our Lil’ Liv.

Livy’s Numbers:

58 days old

Gestation: 33 weeks and 6 days

Weight: 3lbs and 8.2oz

Nov. 24th, 2024

The last five days have been good for Olivia. The settings they made last week to Olivia’s ventilator have made a huge difference. She has been able to stay in mostly the 30s for oxygen support and her CO2 levels have been in her range, which is so great. With this new respiratory strategy, we are going to stick to it for the next couple of weeks and hopefully her lungs continue to improve and then they will try and extubate and move her to the bubble machine again. Here are some highlights of the last few days:

We celebrated Olivia turning two months!

Nonna got to hold Olivia again.

Dad got to hold Olivia…and got peed on, hahaha.

I’ve held her a couple more times.

She took her first big girl bath.

She got her first crib toy that she loves.

We found two night nurses to be primaries.

And…she got her first Christmas tree. Everyone who comes in her pod loves it

Lil Liv’s Numbers:

63 Days

Gestation: 34 weeks and 4 days

Weight: 3lbs and 11oz

Nov. 28th, 2024

Not much has changed with Miss Olivia since I last wrote, but I’ll try to give as much detail as I can.

She is still cruising, growing her little lungs. Her CO2 has been so good that they have weaned her pressure twice, and she has done well with the adjustment, which is great.

Her feedings have been going well also. They changed it yesterday to where she gets her feed over an hour instead of 75 minutes and she has tolerated that well. That will continue to go down until they get to 30 minutes for her feeds.

She is getting so strong and is as feisty as ever. She is still pooping like a champ, sometimes to the dismay of the nurses.

I have talked about a couple of nurses and respiratory therapists in some of the blogs, but I thought I would shout each of them out in the blogs that are not as long.

First we have Erin. She was our first primary and has become a friend to us already. She is an avid Chargers fan and even has season tickets. She has a special needs cat that she loves and she has a Dickens Village that she sets up for Christmas, just like our family. Our favorite thing about Erin though is how she cares for our Little Olivia. She has been with us almost since the beginning and has been a great advocate for our girl. When we know Erin is on, we have sense of peace that Livy is safe and in good hands. And she is the only one that Olivia has flipped off, haha.

Lil’ Liv’s Numbers:

67 days old

Gestation: 35 weeks and 1 day

Weight: 3lbs and 14oz

Nov. 30th, 2024

Olivia is over four pounds! Woo hoo! This is one of three requirements needed to leave the NICU. We knew this wouldn’t be what would keep her here, but it is still a milestone for us to celebrate! Besides that, not much else has changed. She is still on the ventilator and doing well. The strategy that they changed to 10 days ago has been good. Not sure when the next time they are going to try to extubate and try the CPAP bubble machine again. Could be later this week, just depends on how the doctors feel the progression of her lung growth is. She is still feisty, pooping through multiple diapers in one changing sometimes, and still making everyone fall in love with her.

Today’s Nurse Spotlight is Ariel. She was the second primary that joined Team Olivia Ariel likes to travel, going to Kings games, playing games with her boyfriend, and came across a murder scene in Iceland (I know, intriguing, right?). She has been with Olivia since week two. What sealed the deal for Ariel being one of our primaries is she advocated for me to get to hold Olivia while she was still on the jet ventilator. It is more difficult when a baby is on a jet because there are more contraptions but she made it happen. Ariel does ALS, which means she is in a leadership role where she handles serious cases and also helps with transports of babies from different hospitals. So, she doesn’t get to be bedside with Olivia as much as some of our other primaries, but she always makes sure to request her pod when she is helping with breaks for the nurses and she stops in as much as she can to check on her. We are so lucky to have her be a part of Olivia’s journey and in our lives!

I thought I would also highlight some cool things that they do here in the NICU. I will sprinkle them throughout some of my updates.

First is the fabric scent hearts. When babies have to go to the NICU, moms and babies do not get to take advantage of the “golden hour” of bonding immediately. For me, it was such a disappointment. I had an idea of what that time would look like and it was torn from me. And to add to it, not only could I not hold Olivia right away, sometimes we couldn’t even touch her because the stimulation can be too much for little babies. So, at the NICU, what they do to help with bonding are fabric hearts. So, I take a fabric heart that they provide (a volunteer makes them) and place it in my bra, so it picks up my scent. Then when I get to the NICU I am able to place it in Olivia’s bed. Most times the nurses use it to cover Olivia’s eyes when it is bright in the room so it can help her fall asleep better. With it being so close, she is able to smell my scent, so when I am able to hold her, there is that connection. And she can smell and connect with me when I am not there. Below is photo a while back of Olivia holding the heart. Her little hand. So cute.

Lil’ Liv’s Numbers:

69 days old

Gestation: 35 weeks and 3 days

Weight: 4lbs and 1.6oz

Dec. 6th, 2024

No major changes with Olivia. Her vent settings are the same. No word on when they may try and wean yet, just giving her more time on the current vent settings. She had an xray the other day, there wasn’t too much of a change with the haziness of her lungs. She had an echo done this morning and she still has a PFO and her PDA is still moderate. Monday is lab day. Most of her labs came back good, but her red blood cell count was low again. Because she is older, not on the jet ventilator, and more stable, they started to give her epogen. Epogen is used to treat anemia by helping the body create more red blood cells. She will get this treatment for 10 days and then with her labs we will see if she needs to be on it longer.

As I am typing this at her bedside, Dad is changing a very poopy diaper.

Today’s nurse highlight is our primary Courtney. You may remember me mentioning her because she surprised me getting to hold Olivia for a second time. Courtney loves sports. She grew up playing basketball, still plays in a rec league, and coaches high school girls. She loves the Broncos and the Giants. Both of our husband’s only love caesar salad. And she enjoys going out on the lake in their boat in the summertime. We connected with Courtney immediately. Like all of our nurses she has been such a strong advocate for our girl. She really shows that she cares and loves Livy. I am so appreciative of the way she communicates with us, helping us understand all of the medical jargon. Whenever she leaves for a few days, she always tells us she will be praying for Olivia and that means so much to us. We have a feeling she will be in our lives after our NICU stay

Our next cool NICU thing are the NICU Beads of Courage. Every two weeks we’re given a set of beads to string together. Each bead has a different meaning like red means blood transfusion, yellow means hospital stays, and the glass beads are for special milestones. The beads are a way to help families cope during a serious time. I have found that it is a good activity to do at Olivia’s bedside. It will be a cool momento for us to look back on this chapter and a visual reference for Olivia to learn about this time of her life.

Lil’ Liv’s Numbers:

71 days old

Gestation: 35 weeks and 5 days

Weight: 4lbs and 3.2oz

Dec. 5th, 2024

Well, yesterday the doctor decided that it was time to start another round of steroids to see if we can wean her on the ventilator and then try to get her on the CPAP machine again. She did well with the second round of steroids (her first round we had to stop before she got the full treatment because of an infection), and that got her off the jet ventilator, so we are hoping that this will help her take the next step in her little lung journey. Last night was bath night and Dad assisted.

Today went well, they were able to wean her to the goal, so the plan is to extubate Friday morning. Jeremy and I will be at the hospital all day. So lots of prayers for our girl to transition well and that her lungs have grown enough that she will have the stamina to stay on the CPAP machine and breathe on her own.

Our last day primary nurse spotlight is Sami. She is a firecracker and we hit it off right away. She happens to live near us, so we chat about our favorite food and drinks at the local coffee shop MoJoe’s. She has a little one at home and one on the way. She goes out of her way to call us to give us updates, which is so nice. The first time I held Olivia for two hours was when she was our nurse. I found out we have a connection. She went to high school with one of my friends, Taylor. We have had so many of those small world moments in our time at the hospital. She really cares about Olivia and us and it really shows. She does the cutest things with Olivia to make us smile. Below is an example.

Lil Liv’s Numbers

Age: 74 days

Gestation: 36 weeks + 1

Weight: 4lbs and 4oz

Dec. 6th, 2024

Olivia was successfully extubated today. It took a little bit of time to get her comfortable with her new apparatus, but she got the hang of it. We also had a little scare in the beginning with the machine that reads her CO2. It was showing way high. Luckily the gas test showed that it was way off and her CO2 was in her normal range. She is doing better with this transition than the last attempt, so we are still hopeful that she will not need to be intubated again. She is at a higher level of pressure on the bubbler, so the next steps would be to lessen the pressure, but that all depends on her, how much oxygen support she is needing, and her CO2 levels. But one step at a time. We want to first surpass 48 hrs off the vent. The one drawback of the CPAP is that you can’t really see her face but here is our little fighter:

It took us a long time to find any night primaries. Our first night nurse primary spotlight is Jessica. Jeremy likes to call her Reese Witherspoon. She is so sweet, there is no way you couldn’t love her. It was easy for us to ask her to be a primary and we are so thankful she said yes. Since it is Christmas time she loves wearing different Christmas socks every night she works. So it is fun to see what ones she is rocking. She is the mama to sweet a boy. And we found out she is a fan of Bobby Bones, one of my favorite radio hosts. A fan of Bobby Bones is a friend of mine

Lil’ Liv’s Numbers:

Age: 75 days

Gestation: 36 weeks + 2

Weight: 4lbs and 4oz

Dec. 8th, 2024

Olivia has officially surpassed her record for being on the CPAP machine. With that being said, we are not in the clear. It is going to take time and we are going to find out if her tiny lungs have the stamina to do all the work.

Today her CO2 levels were high, so the doctors decided to move her pressure from seven to eight. Eight is the highest pressure they will do on the CPAP, so it is a little nerve wracking for us. If her CO2 does not stay in her range and it appears she is working hard to breathe, she will have to be intubated again. She hates having the mask/prongs, but she didn’t like the tube either. I know she will be so happy one day when she will not need any of them.

It is so hard watching her, and not being able to do anything to help her. We love that little girl so much!

I’ll leave you with a little Christmas joy. Below is a photo of our new family stockings. We can’t get over how cute Olivia’s is.

Lil’ Liv’s Numbers:

Age: 77 days

Gestation: 36 weeks + 4

Weight: 4lbs and 8oz

Dec. 9th, 2024

We are on day four of bubbles. Livy is doing well. She had a great day and when we left the hospital at 10:30 her CO2 was in her range and her oxygen was in the 30s. So proud of our little girl. She still has a ways to go and it is still one day at a time. Even sometimes an hour at a time, but we will take every win we can. We have so many people cheering for her. Every nurse and respiratory therapist that came in our pod was so excited to see her doing well and on bubbles.

Here are some other milestones we are celebrating:

Her brain scan came back clear. No brain bleeds still!

She had her eye exam and her eyes are looking good. Next exam will be in two to three weeks.

She has had less heart rate drops each day.

Her labs are looking great, and it looks like the Epogen they are giving her to help her make her own red blood cells is working!

Lil’ Liv’s Numbers:

Age: 78 days

Gestation: 36 weeks + 5

Weight: 4lbs and 7oz

Dec. 11th, 2024

Well, what can I say. Livy is doing well, so not too much to share. Her oxygen has stayed in the high 20s and low 30s for the most part. Her CO2 has stayed within her range. She is still on bubbles of 8, but it sounds like if she continues to do well, they could try and wean her to 7 maybe tomorrow.

I forgot to share, but on Monday night, we were talking to the nurses before we did her cares about her poop history and how she has shot her poop out at some of the nurses and onto her bed. And she has had a few three diaper occurrences. And when I went to change her, lo and behold, she shot it out for me! I had changed her diaper and was starting to wipe when it shot out! That was the first time she had done it to me. Luckily I didn’t get nailed and the bed wasn’t too bad, we were able to clean it. If it gets down deep in the bed, she would have needed to get a new bed.

Our next nurse to spotlight is our night primary Mara. A little bit about Mara, she has two cats that rule her home. Her and her boyfriend enjoy going for hikes, spending time with family, and chillin’ at home watching shows. And when they can, they enjoy going to country concerts. Chris Stapleton is one of her favorites. Everyday at some point either Jeremy or myself will say, how lucky we are that we have amazing nurses taking care of our girl and Mara is definitely special. From the very beginning Mara treated Olivia with such tenderness and genuine care. Everytime she is with Olivia she is looking for ways to improve her situation and help her be successful. For example, last night she could tell that the prong set up that Olivia was on, was hard for her to bubble continuously. So she decided to switch her over to a different one that was more like a headband than a hat and she thought that going up in size would help her as well. Olivia has been a pro bubbler ever since! She also makes sure to explain everything she is doing with Olivia so we are educated and understand, which is so nice.

Lil’ Liv’s Numbers:

Age: 80 days

Gestation: 37 weeks

Weight: 4lbs and 9oz

Dec. 14th, 2024

In the last update I talked about how they may try and wean her to bubbles of 7. They did wean her early Thursday morning, but by the end of the day she just was not liking it, it seemed like she was working harder to breathe, so they moved her back to 8. If we are learning anything during this time, it is patience. It is all on her time and it is going to be a slow transition for her little lungs. But we are so proud of her. She has officially been off the ventilator for a week! Woohoo!

Continuing our spotlight of cool things in the NICU, they do a great job of documenting special days. With having Olivia at the end of September, there are ample holidays for us to celebrate. So many firsts for her and Sidney, who is the child life specialist, does such a sweet job. Many of you have seen her Thanksgiving photoshoot. This Wednesday, Santa and Mrs. Claus are coming the the NICU (Santa!!!!). We will share that picture for Christmas. But the one we haven’t shared are her Halloween pics. She had a cute little pumpkin head. And then turned into our little love bug.

Lil’ Liv’s Numbers:

Age: 83 days

Gestation: 37 weeks + 3 days

Weight: 4lbs and 14oz

Dec. 18th, 2024

Olivia is doing great on the bubbles still! So proud of her. Her steroid regimen ended on Friday, so on Monday they decided to try her on 7 and she has been doing well. She hasn’t needed much more oxygen support than when she was on bubbles of 8.

I can’t remember if I explained in detail about the bubble/CPAP machine she is on, so here is a little more detail or at least a refresher. The bubble/CPAP provides pressure to her lungs without being on a ventilator, while also still providing oxygen support. So, the lowest she would go on Bubbles/CPAP is a 5. Some babies just go straight to room air after that but some go to high flow oxygen through a cannula. With her lung history, I think that is probably what will happen. She can’t try to bottle feed until she is on a lower amount of oxygen support. If she is on high flow it would need to be 2 liters or less. From the doctor’s notes they are going to take it slow and not lower her bubble settings more than once a week unless she miraculously shows that she doesn’t need the higher settings.

One question we are frequently asked, “When will Olivia be able to come home?” We have wondered that as well, but unfortunately it is difficult to predict the exact date. It depends on her progress. With how things have gone and how Liv takes her time, my guesstimate is February. But we will just have to see.

And just a refresher, the goals she needs to meet in order to go home are:

4lbs – DONE!

Minimum oxygen support

Bottle Feed

As many of you know, my favorite artist is Taylor Swift. A trend that is popular with fans of hers are friendship bracelets. I thought it would be fun to make Team Olivia bracelets for our primary nurses. I asked each of them what their favorite colors were, created, and delivered them. They all really loved them and a few of them have even told me they wear them when they are at home. So sweet. Here is a photo of a few of them:

Lil’ Liv’s Numbers:

Age: 87 days

Gestation: 38 weeks

Weight: 5lbs and 11oz

Dec. 21st, 2024

Today did not turn out to be the day we thought it would be. When we got to the hospital we found out Olivia had an eye exam. They found a very early stages of ROP. ROP stands for Retinopathy of Prematurity. It is an eye condition that can develop in premature babies (born before 37 weeks of gestation) or babies with low birth weight. ROP occurs when the blood vessels in the retina, the light-sensitive layer at the back of the eye, do not develop properly. This can lead to abnormal blood vessel growth, which can damage the retina and cause vision problems. They are going to keep an eye on it, so she will start having eye exams on a weekly basis. This does not automatically mean that she will need medication or surgery but they will be watching it closely.

The next, update is they decided to move Olivia back to bubbles of 8. She has been needing more oxygen support. The doctor ordered an X-ray and it seems like her lungs are not as open as they would like them to be, so back to 8 we go. The doctor explained that this is not necessarily a step back. It’s just that we want her lungs to get the expansion they need so in theory if we can get her lungs to stay expanded then weaning the pressure could go faster eventually. So that’s where we’re at.

Some days it is really hard to stay positive. We have been in the NICU for 90 days now. Olivia is strong and such a fighter, but it is so hard to see her everyday, so little, struggling to breathe. If she is upset, we can’t just pick her up and try to soothe her.

As we get closer to Christmas I think about how her first Christmas she will be hooked up to machines instead of getting snuggles and making special memories with us. It’s also another level of hard splitting our time. We do that every other day, but for the holidays it feels extra hard. It sucks to think about us not being with her the whole day. We want to spend time with our families, but I know, at least for me, I will be thinking of our little Liv. I know that she will not be alone, but it still feels that way. The first Christmas is one that many parents look back on with joy, but honestly for me, I feel like I will want to forget it.

We know it is all on Olivia’s time and how her body grows and adjusts, but it is emotionally exhausting. Most days we suck it up and are strong for her, but it’s hard to be that everyday. It can sometimes feel isolating. We have so many people who support us, but not many people know what we are experiencing. And that is no one’s fault either. We don’t expect anyone to try to. But it’s one of those situations where you can be in a crowded room and still feel so alone.

OK, I think I have hit my vulnerability quota. Sorry to be such a downer during the magical time of the year. I’ll leave you with a few photos of Olivia that I look at when I want to smile.

Lil’ Liv’s Numbers:

Age: 90 days

Gestation: 38 weeks + 3 days

Weight: 5lbs and 13.8oz

Dec. 26th, 2024

Last weekend was a tough one. I’m sorry for my downer of a post last time. But I’ll make today’s more positive

We have a six pounder! When you go from 1lb 4oz to 6lbs, your baby looks ginormous. Now we just want her to grow more length wise.

Olivia was only on bubbles of 8 for less than 48hrs. The doctors were hoping the more pressure would mean she would need less oxygen support, but the pressure was too much for her. She was more irritable, it was not comfortable for her, and she was actually needing the same or more oxygen support so they switched her back to 7. She has been cruising along nicely. She is usually in the 40s to mid 30s for oxygen support. I don’t think they will try and wean her until she is in the low 30s consistently, so we’ll just have to give her the time she needs.

She will have her next eye exam on Saturday, so no updates there yet. But keep praying and sending good vibes that her little eye vessels grow normally.

Olivia is going to be a big cousin! My sister and brother-in-law are expecting baby girl Illaria Miranda Osman in July! We are so excited! We get to raise our babies together. My mom went from not knowing if she would ever be a Nonna, to having two nipoti (grandchildren in Italian) within a year.

Lil’ Liv’s Numbers:

Age: 95 days

Gestation: 39 weeks + 1 day

Weight: 6lbs and 5.6oz

Dec. 29th, 2024

Here we are, coming up on 100 days and Olivia’s original due date (1/1/25)! It is really crazy to think that our Lil’ Liv has been in our world for 100 days…and in the NICU for that long. We love her so much!

First update is her eye exam. There were no changes from last week. The blood vessels have not grown more, so no changes. She will have another exam on Saturday.

Her oxygen support has not changed. She is still on bubbles of seven and needing low 40s to high 30s of oxygen. Really hoping her support can go down to the low 30s in the next few days so we can try and wean to bubbles of six.

Olivia is gaining a lot of weight…almost too much, too fast, so they have lowered her calories, but upped her protein to help her still grow lengthwise. We have also come to a point where I am not able to produce enough milk to feed Olivia. I am still going to pump and give her what I can, but they will begin giving her formula to offset the lack of breast milk. I knew this day would come, but it is still sad to think about. I am proud that I was able to provide for her for the first three months of her life.

On Saturday night, Dad was changing Livy’s diaper when he made a critical mistake. He did not keep the diaper up, which provided the perfect opportunity for Olivia to shoot some poop. She nailed the isolette, but fortunately it was salvageable and she didn’t need to get a whole new bed. But Dad learned a good lesson, never let your guard down when changing Liv’s diaper.

Tomorrow morning is lab day, so we will see how she is doing with those and then this week she will also have another echo and brain scan.

Here is a cute screenshot from the angel cam we got this morning. The angel cam is great. We are able to see her anytime we want, unless she is receiving care. Those cute little hands and chubby cheeks. We can’t get enough of em!

Lil’ Liv’s Numbers:

Age: 98 days

Gestation: 39 weeks + 5 day

Weight: 6lbs and 11oz

Dec. 31st, 2024

We hit the first milestone of the week and it is a big one! Olivia is 100 days old! We are so blessed to be her parents. Although the beginning of her life has been a rollercoaster, she is an inspiration to so many of us.

For her 100 day celebration, we decorated her space with a banner and streamers. We also brought in rose gold “100 glasses” for everyone to wear. It was a lot of fun. Here are a few photos of us, my mom, my godmother (she got to meet Olivia today), and some of our primaries celebrating the milestone.

Yesterday, she was transitioned over to bubbles of six! She has done well. We are being cautiously optimistic, but are cheering for her and she has lasted almost 36 hrs.

Her feeds have been compressed to 30 min, which means that it takes 30 min for her to finish her feed. This is an ideal time, because it is approximately the duration of a normal feeding session. This change was made last Friday and she has not had any issues so far.

Lil’ Liv’s Numbers:

Age: 100 days

Gestation: 39 weeks + 6 day

Weight: 6lbs and 15oz

Tomorrow is Liv’s next milestone of the week! She hits her due date! Be on the lookout for a slideshow

Jan. 2nd, 2025

Yesterday was Liv’s due date and she is doing big things!

Since our last post, Livy has moved to bubbles of 5! She is really movin’ and a groovin’ now. She has been doing well. If she continues to do well over the next couple days they may try and move her to high flow with just a nasal cannula. I think she is going to love not having a big contraption on her face and we will be able to see her better and she can start wearing all the cute bows and hats we have.

Olivia’s head ultrasound came back all good. Such a blessing! And her heart echo this morning came back and stated that her PDA is small and there is no hypertension, which is great news!

Tomorrow is her follow up eye exam, so hoping the good news train doesn’t stop!

The poop stories never end. On Monday, our primary nurse Courtney was changing Olivia. She of course knows her reputation of shooting. She was already on the second diaper and right when she was wiping, Olivia shot it out and hit the wall! Not her bed, but the wall. We had heard stories of babies doing this, and now ours has done it. We are seriously thinking of wrapping her nursery in plastic!

Lil’ Liv’s Numbers:

Age: 102 days

Gestation: 40 weeks + 1 day

Weight: 6lbs and 15.8oz

Jan. 4th, 2025

The leaps and bounds Olivia has made in the last week is nothing short of miraculous. She went from bubbles of 7 on the 30th to high flow on 1/3! Olivia is a rockstar and we are so proud of her strength and resilience.

Here is a little more description about high flow: High-flow nasal cannula (HFNC) therapy is a non-invasive respiratory support technique that uses nasal prongs to deliver heated, humidified air and oxygen to premature babies. Olivia is at 5-liters per minute. In order to try and feed her by mouth we need to get down to 2-liters per minute. So like the bubble CPAP machine, we will be trying to wean her down. Right now her oxygen support is steady around 50. So, it is higher than what she was on bubbles, but she is much more comfortable now without everything covering her face.

As you can see, over the last month Olivia has not had any issues gaining weight, which is good, but also maybe a little too much at a time. Right now she is in the 30 percentile for weight but only 1 percentile for height. So we need her height to catch up. When it is off this much, it could cause her to have issues breathing with more weight on her. They have lowered her calories to 24, so hopefully she will start to lean out. But we do love those chubby cheeks. She did lost 40 grams tonight. One night of losing weight is OK, but if it continues to happen that can be an indicator that she may be working too hard to breathe and she may need to go back to the bubbles for a little bit longer. But we will wait and see

Olivia had another eye exam yesterday. We were actually there for it. I couldn’t watch it because I hate eye things, but Jer watched it. He said it wasn’t too bad. They numb her eyes, so she doesn’t feel anything. There is still no change. She is still in the same phase for ROP, but her blood vessels are not getting longer, so there is some concern for that. She will continue to get weekly eye exams. But if the blood vessels don’t grow she may have to have laser eye surgery in March or April. But we will cross that bridge when we get to it.

Lil’ Liv’s Numbers:

Age: 104 days

Gestation: 40 weeks + 3 days

Weight: 7lbs

Jan. 7th, 2025

We are at the five day mark for high flow. Livy is doing well. She has been stable sitting in the low 50s to mid 40s for her oxygen. Ideally we would of course like her oxygen support to be lower, but whatever she needs, she gets of course. In the next few days they may try and see if she can go down to 4-liters.

Over the last couple of days Olivia’s weight gain has slowed, which is good. Last night she gained 10 grams and tonight she gained 10 grams. Hopefully on Sunday when they measure her length she will have made gains that way. Her feeding tube did get moved from her mouth to her nose, which I think she is much happier about. She was always trying to get it out of her mouth and now she probably doesn’t even realize it is there. She is also starting to learn to keep her pacifier in her mouth without someone having to hold it! She’s such a big girl!

Not much else has changed. We are just loving on our girl and cheering her on so she can come home.

Lil’ Liv’s Numbers:

Age: 107 days

Gestation: 40 weeks + 6 days

Weight: 7lbs and 3.7oz

Jan. 12th, 2025

First news of the weekend is that Olivia had her eye exam on Saturday. Her results showed improvement from the previous exam last week. Her blood vessels are growing and her ROP went from Phase 1-2 to Phase 0-1! She is not out of the woods totally but so great to know there is improvement. Next exam is Saturday!

Olivia is now in a big girl crib! She is loving it and enjoying the more room now.

When it comes to her oxygen, she is still on 5-liters and has been in the 50s for support still. I don’t think they will try and lower her to 4-liters until she is consistently in the 40s. We will get there though

She did gain 1.3 cm, which is great! Which brings her to 47.3 cm. Would love to see her get a growth spurt and get to 53.8 cm by February 1.

Liv also got to wear her first bow. She is the just the cutest…well, at least we think so!

Lil’ Liv’s Numbers:

Age: 3mos + 21 days

Adjusted Age: 1 week + 4 days

Weight: 7lbs and 10oz

Length: 18.6 in or 47.3 cm

Jan. 18th, 2025

Sorry for not updating much this week. There hasn’t been much when it comes to new information.

Today Liv had an eye exam. Unfortunately, her eye vessels have not grown out further and the ROP is back to Phase 1-2. Nothing definitive on any treatment needed. She will continue to get weekly eye exams.

On a positive note Liv has been doing well on with her oxygen support. Over the last couple of days she has needed less support; she has mainly been in the 40s and she was lowered to 4.75 liters. I think tomorrow they may try and drop her to 4.5 liters. Slow and steady is what we have found works best for Livy.

On the home front, Olivia’s nursery is almost done. Making us even more excited for her to come home.

Lil’ Liv’s Numbers:

Age: 3mos + 27 days

Adjusted Age: 2 weeks + 3 days

Weight: 7lbs and 14.7oz

Length(Updated on Sundays): 18.6 in or 47.3 cm

Jan. 25th, 2025

We cannot believe that our little Livy is four months old. Wednesday is when we celebrated this milestone by having a little spa time. She loves her baths.

Next milestone is Liv hit 8lbs! She is now 8lbs 5.8oz! She is our girl with sweet cheeks. And yes…we love to squeeze them.

Next milestone is today, Liv moved down to 3.5 liters! So far she has done well, and her oxygen support has not had to be adjusted. She is still hanging out in the 40s. So proud of our growing girl. Hoping if we keep going at the same weaning rate, we may be able to start trying to feed her by mouth by next week! But we will see. Don’t want to get ahead of ourselves, but so happy for her progress.

Olivia had her eye exam this morning and the doctor reported that she is heading in the right direction. Her blood vessels are still in zone 2, but further out. And still phase 1 for ROP, but improving.

I know many of you may be wondering if there is a timeline of when Liv will be able to come home. Unfortunately, there is not a way to guesstimate that. Every baby is different and makes progress in their own time. I am hoping that will be home by the end of February or early March, but we will just have to see how Olivia does with her oxygen support. And then the next challenge she has that I mentioned earlier…feeding by mouth.

You may have noticed that on “Liv’s Numbers” there are two ages. One is her age from the day she was born and the other is her “adjusted age.” Adjusted age shows what age Olivia would be if she had made it to her due date. For the first couple of years, we will be looking at her adjusted age when working on milestones. That’s not to say, that she may still hit some milestones early…or some later because of being a micro preemie, but that will be the baseline we will go off of for working on the typical baby milestones.

And I do apologize for not updating since last week. It’s harder to update now because Olivia is doing so well, we can hold her all the time now. I used to type the blogs when we were at the hospital watching her sleep in her bed, but now we hold her almost the whole time we are there. It is a good problem, but it just means I need to find time to blog outside of that time now…or when Jeremy is holding her and I am not pumping.

Lil’ Liv’s Numbers:

Age: 4mos + 3 days

Adjusted Age: 3 weeks + 3 days

Weight: 8lbs and 5.8oz

Length(Updated on Sundays): 18.9 in or 48 cm

Jan. 28th, 2025

We are bedside tonight as I type this. Dad is holding Olivia while we play some Disney lullabies. If you know me, you would expect nothing less. I am quite the Disney fanatic. I don’t have the best singing voice, but last night I sang her to sleep, singing some Disney classics.

Olivia had a busy day! First, they lowered her oxygen pressure to 3 Liters and she has been doing great! So happy for her. Next, she had physical therapy and had a nice workout. She did well. She has good range of motion, but does favor her right side, so we are working to have her be happy on her left side as well. And then she had music therapy! She loves it, which is good since both of her parents love music. I am not sure I have shared about the music therapy, but today they had two people come in. One held her while the other one played guitar and sang.

On my previous posts over the last couple of weeks I keep forgetting to share a newer struggle Liv has. Since she is mostly on formula she has had a hard time pooping on her own. I know, shocker, right? But the poor girl cannot poop without glycerin. So sad. We are hoping that her body gets used to it and will soon be able to poop on her own again. And hopefully the shooting poop does not return.

Lil’ Liv’s Numbers:

Age: 4mos + 6 days

Adjusted Age: 3 weeks + 6 days

Weight: 8lbs and 8.9oz

Length(Updated on Sundays): 19.7 in or 50 cm

Feb. 2nd, 2025

Happy Sunday from Olivia!

Alright, let’s jump into some updates! I last reported that Liv was moved down to 3 liters on Tuesday, but by Thursday they decided she was working too hard so they moved her back to 3.5 liters. Tomorrow they are going to try and go down to 3 liters again. Praying that her little lungs have gotten more strength and stamina to handle it.

On the poop front, they have started to give Olivia prune juice to see if that can help her poop on her on. That was started on Friday, but so far no dice. She has still needed the glycerin to help her. But it works like a charm.

Liv had her eye exam on Saturday and it went well. Her vessels are entering zone three, which is the last zone. And her ROP went to 0-1. Woo Hoo! So she will not have another eye exam until February 15.

Tomorrow she will have another echo, to see if her PDA has closed and check for any hypertension. And she will also have her weekly labs.

Lil’ Liv’s Numbers:

Age: 4 mos + 1 week + 4 days

Adjusted Age: 4 weeks + 4 days

Weight: 8lbs and 15.6 oz

Length(Updated on Sundays): 20.4 in or 52 cm

Feb. 5th, 2025

Liv has had a great week. On Monday we went down to 3 liters and she did well, so the doctors decided today to try 2.5 liters. So, far she has done OK. We will see how the next couple of days go. Her oxygen support has been in the 30s. For right now, it seems she is liking less pressure.

Since Olivia is a big girl, we have been introducing more things for her to interact with. So she has:

Tummy time with her boppy

A mirror and contrast cards to look at

Some cute rattles

A swing and and a chair that she can be in

She enjoys most of them, lol. Still getting used to a rattle.

We have good news on the poop front! The prune juice is working. Since Monday, Liv has been able to poop without glycerin. We are so excited for her.

On Monday, Olivia had her monthly echo. It still shows a small PDA and small PFO, but no hypertension. Those should both eventually close on their own.

Lil’ Liv’s Numbers:

Age: 4 mos + 15 days

Adjusted Age: 5 weeks

Weight: 9lbs and 6.8oz – Yep, you read that right!

Length(Updated on Sundays): 20.4 in or 52 cm

Feb. 9th, 2025

Alright, this is going to be a long post, so prepare yourselves. Let’s start with the highs!

Olivia is officially on low flow oxygen! The is a great step because she will more than likely be going home on low flow oxygen. She is on 1.5 liters and doing great so far. What’s also nice about it is we can take her in and out of the crib easier and don’t have to ask anyone to help us.

Because Olivia is now on low flow we can start to try and feed her by mouth. We are going to try and give her a bottle on Monday.

Today Olivia had her hearing exam and she passed! WooHoo! Olivia continues to gain weight and grew another cm this week.

Now onto the lows…

The last few days have been a bit emotional. On the same day Liv went to low flow, we found out that she has a hernia. It is common in preemies. Here is some info about it:

A “nuck hernia defect into the peritoneal cavity” refers to a condition where a part of the abdominal lining (peritoneum) protrudes through a weakness in the “canal of Nuck” in a female, creating a connection between the inguinal canal and the peritoneal cavity, allowing abdominal contents like the ovary or bowel to potentially herniate into the groin area; this occurs when the canal of Nuck, a fetal structure that usually closes after birth, fails to fully obliterate, leaving a potential opening for herniation.

So for Olivia, her ovary is what went through. This is better than an intestine, but still not good. They were able to push the ovary back, but the hole will need to be closed so it does not happen again. This means Olivia will have to have surgery. This is a very common surgery with preemies, although it happens more with boys. It will be a short surgery that will take an hour to an hour and half. It will be done laparoscopically, but she will have to be put under general anesthesia. Olivia has been through so much already. Jeremy and I have each had our moments over the weekend of breaking down and being worried. Luckily they have been at different times so we have been able to support each other during those moments. Liv is our fighter and she is our strong girl, but it doesn’t make it any easier. We have seen parents throughout our NICU stay who have had to send their little ones off for for a procedure and seen their worry and pain. We always told each other how thankful we were that we had not had to do that. But now here we are, scared, nervous, and just wanting what is best for our girl. The surgery will not take place until we are closer to going home. We will not know that until we see how she does with feeding. We will let you all know as soon as we have more details about a date.

140 days. It is honestly hard to believe. We try to celebrate the milestones because we are so happy to have our Lil’ Liv, but this milestone is hitting different than others. 140 days is a long time. We are coming up to 5 months of Olivia in our world. But in our world has meant the NICU, far from home. Never having been on the outside of those walls, or taking a breath of fresh air. The daily drives to the hospital, lacking time for self-care and taking care of our home. Having less time with our family and friends. Feeling exhausted physically and emotionally. Trying my best at work when I really want to just be at the hospital, but then when I am at the hospital, feeling guilty for not working. It is all taking a toll. I am so thankful for our support system because without it and our amazing primary nurses, the fatigue and emotions we feel would be tenfold. I pray that our NICU chapter is coming to a close soon, but Liv still needs time before she gets to take that drive home with us. Lately, I dream about that day and can’t help but tear up. It is still an unknown and is hard to imagine it really happening.

If you are still reading, thank you for allowing me to be vulnerable with where I am. I look forward to sharing more great updates of Olivia. Our little hero, who continues to show us what true resilience is.

Lil’ Liv’s Numbers:

Age: 20 weeks

Adjusted Age: 5 weeks + 4 days

Weight: 9lbs and 12.4oz

Length(Updated on Sundays): 20.86 in or 53 cm

Feb. 18th, 2025

We have made a lot of progress in the last 9 days. Let’s catch up!

Liv is on 1.5 liters for her oxygen support. We have tried a couple of times to reduce it to 1 liter, but she is not quite ready and that is okay. She is able to come home on that amount of oxygen support.

Liv had an eye exam late last week and the results showed that her eyes are great! No more eyes exams in the NICU and she will have a follow-up in 3 to 6 months.

Olivia has been taking bottles for a week and is doing very well. Babies usually take some time to get used to eating, but since the beginning she has been able to take full bottles. Over the weekend, she made even more progress in her bottle feeding and is now able to finish her bottles during every feeding. It’s really remarkable and we are so proud of her. Today, they took the NG tube out of her nose and is now only feeding and receiving her medication by mouth. It’s so amazing to have one less thing on her precious face.

Liv’s surgery was tentatively scheduled for the 28th, but since she has done so well with her feedings, they were able to move her surgery up to Thursday! So, if you are the praying kind, or like sending good vibes, Thursday is the day. Her surgery should be around 1:30 pm, but could start earlier. There is a chance with the surgery she could have a small setback with her oxygen support, but we could be heading home next week!

It a very different experience because throughout most of our time in the NICU, Olivia’s progress has been slower and now we are on hyperspeed. We are ready and excited to have her come home, however, we will be sad to leave the community we have created here. We definitely have many people who we will be a part of our lives forever. Especially our primary nurses.

Lil’ Liv’s Numbers:

Age: 21 weeks + 2 days

Adjusted Age: 6 weeks + 6 days

Weight: 10lbs and 7.69oz

Length(Updated on Sundays): 21.46 in or 54.5 cm

Feb. 20th, 2025

Olivia did it! She is so strong.

The surgery took about 50 minutes. With these kinds of hernias, it is common that if there is one there is probably another. They went in to repair the hernia on the left and while they were in there they checked the right side and there was a small hernia. They were able to fix both with no issues.

We are so happy to have this milestone behind us and that Liv did so well. The dream of coming home is becoming more of a reality. If her recovery goes well, it could be in the next few days! Crazy to think about. It doesn’t seem real.

We are so thankful to the surgeon, anesthesiologist, and the entire team who did an amazing job. And we are grateful to our NICU community, who supported us today, as we experienced our own anxiety. Our primary nurses, Erin and Ariel were here with us, which was amazing. Our other primary Courtney stopped by before Liv’s surgery to wish her well. And then one of our night primaries, Jess, was with her last night and will have her tonight, which is very comforting.

Thank you to everyone for your prayers and good vibes. We really do appreciate it so and are so thankful for everyone, even those that may not know us, but are still praying for our sweet girl. I think that’s it for now. We will update you on the go home plan as soon as we know.

Lil’ Liv’s Numbers:

Age: 21 weeks + 4 days

Adjusted Age: 7 weeks + 1 day

Weight: 10lbs and 12oz

Length(Updated on Sundays): 21.46 in or 54.5 cm

Feb. 22nd, 2025

It still doesn’t feel real. And it probably won’t until we are driving away with our little girl. She has lived her entire life, five months today, in a hospital and on Tuesday she gets to come home and experience the rest of the world.

We are so proud of our little fighter. We say it all the time, but we can’t say it enough. And now she is ready to take on a new challenge.

Are we ready? Well, we don’t really have an option, haha. We feel ready though. Her room is all set, but we know it will be an adjustment. We will be setting up new routines. And we will be doing everything for our little girl. I know it sounds weird because that’s what parents do, but when you have been in the NICU for five months and nurses have been caring for your little one, it will be an adjustment. But one that we are happy to take on.

Last night driving to the hospital, Jeremy broke into tears thinking about taking Olivia home. And when we got the hospital and entered the parking garage I started crying thinking this will be the last Friday we are here. It is crazy to think about. We told every security guard, nurse, respiratory therapist, front desk admin, and volunteer that we saw last night that Liv is coming home! And everyone was so excited. And now we are telling all of you and the world!

We have had people reaching out asking if there is anything they can do for us. Here are some ways. And we don’t expect anything from anyone, but we have learned from this experience that our people want to love on us in different ways and we appreciate anything.

We definitely appreciate all of your love, prayers and good vibes. It is great that Liv is coming home, but we will still have some challenges. She is coming home on oxygen, so praying that her lungs will continue to grow stronger and she will eventually be weaned off this support. We will also be giving her breathing treatments, which is a new thing for us as well. And our days will be filled with appointments like the pediatrician, pulmonology, physical therapy, speech, ophthalmology, and others.

We appreciate you all for understanding this new chapter and supporting us and Olivia as she continues to get stronger.

Lil’ Liv’s Numbers:

Age: 5 months!

Adjusted Age: 7 weeks + 3 days

Weight: 10lbs and 12.49oz

Length(Updated on Sundays): 21.46 in or 54.5 cm