9 month update

I figured it was about time for an update! Life has been INSANE over here. Jason and I are both back in school and are each taking a full load of classes (crazy, I know). I'm taking most of my classes online so I can stay home with Eli. I planned my campus classes during Jason's breaks at school so he can come home and watch Eli. Jason also works part-time at the MTC. Our life has basically been Eli, eat, sleep, school, study, and work.

Today was Eli's 9 month check-up with the doc! Here are his stats:
weight: 16 lbs 2 oz (3rd percentile - finally on the chart!)
length: 28 1/2 in (57th percentile)
head circumference: 17 1/2 in (42nd percentile)

We have a long skinny baby :) Overall the pediatrician says he is doing great! Eli qualified for Synagis shots this year (protects against RSV) so we will be making monthly visits for those starting in November.

Eli had to get his toe pricked, but he handled it like a champ!

Here are 9 fun facts about Eli:

1. Eli has turned into a little rolly-polly! We were worried about him getting behind in his development, but he's really doing well! A therapist comes to our apartment every other week to work with him and she says he's making great improvements.

2. Eli will eat pretty much anything, which is awesome! His favorites are squash and pears. When we moved to Utah Eli started a breastfeeding strike which was a total bummer because....it never ended. So I have been back to pumping for the past three months. As much as I don't want him to grow up, I am also counting down the days to his first birthday so I can finally be done with pumping!

3. Eli loves his exersaucer. While he's eating breakfast, he will look at it the entire time. Or if he's doing tummy time, he stares at it until we put him in. I love to watch him squeal while he plays with all the toys.

4. A not-so-favorite habit, Eli has been waking up in the middle of the night crying super hard. And in general not sleeping too great. Getting him to bed is difficult and he wakes up several times before going to bed for good. I don't know if he's going through a growth spurt or what, but needless to say, night time is not my favorite time.

Ryan serenading Eli. I have no idea how he got into this position haha

5. Something funny he has just started doing is scratching his head. The times he does it are so random and funny that Jason and I just sit and laugh at him.

6. He loves fabric. He sometimes gets cranky while I'm pumping so I throw a burp cloth on his face and he's seriously entertained for 20 minutes. It's great!

As we were getting ready to head for the BYU game I asked Jason to get Eli's hat....he came back with this one

7. Eli has the best giggles and smiles! His extra ticklish spot is the back of his neck, guaranteed he will always laugh.

8. He's just started to do this scary thing with his swing. Whenever one of us leaves the room he starts to roll onto his tummy in his swing like he's trying to escape or something. Normally, we turn him back over before he gets into danger. Today I was saying goodbye to Jason at the door and Eli started to cry. We both looked over at him and Eli had rolled onto his tummy and was slowly sliding off the swing while holding onto the sides for dear life.
He looked a little like this:


Looks like we're going to have to start using the safety buckle from now on...

9. Eli loves his dad. My favorite part of the day is when Jason comes home and watching Eli's face light up in happiness. I love that they are best friends :)

Read More

Eli's Birth Announcement

Read More

Home Life

Sorry for the loooong hiatus. Time has flown by so quickly. It's crazy to believe that Eli has now been home with us for two months! He has changed so much, it is hard to believe he was once that teeny baby in the NICU. Here is what's been happening with us.

After our pulmonolgy appointment last month, the doctor decided we needed to try Eli off of oxygen completely. Prior to this, Eli had been on the lowest setting of oxygen for a few weeks and we'd been taking the oxygen off during the day for a few hours. It was definitely time to see what he could do! The doctor said if he made it for two weeks without oxygen, he would be in the clear. We were pretty nervous that first night, but Eli was still wearing his monitor so we knew it would beep if anything were to go wrong. Those first few days we were nervous, but excited that he was getting strong enough to not need any support. And it was also great to not have to carry all of the equipment around the house. We felt free.

About a week and a half later Eli was acting a little lethargic. I didn't think too much of it because it was still the morning and I thought he might perk up more in the afternoon. Throughout the day he wasn't very hungry and was still sleeping a lot. I took his temperature and it was normal so I thought everything was fine and he just needed to sleep more that day. I told myself I would call the doctor if he was still lethargic the next day. That evening, Jason and I went out to dinner and Jason's parents watched Eli for us. I put the monitor on him since he had been acting a little off just in case. While we were gone, Eli had a few apnea episodes–not severe, but enough to make all of us concerned. Jason and I came home and when I picked up Eli he felt hotter than normal. We took his temperature and it was 102º! He had a few more apnea episodes and we then we really started to worry. We put Eli's oxygen back on and called the pediatrician's office. Since it was after hours we talked to the on call nurse. She spoke with the doctor and then told us to head to the ER. Before we left Jason and Cliff gave Eli a blessing. We went knowing we made the right decision and the doctors would know how to help Eli.

The nurse had us strip him down once we got to the ER since he was so hot.

We got Eli to the ER and all checked in and waited to see the doctor. At this point, I was starting to feel sick. I wasn't sure if I was feeling nauseated because I was nervous for Eli or if I was really starting to get something. Either way, I physically wasn't able to take care of Eli. Jason and I decided I would go home and get some rest (it was 1am at this point) so I could take care of Eli the next day. Poor Jason didn't get any sleep since hospital staff kept coming in and out to do tests on Eli to figure out what was wrong. A few hours later, the doctor diagnosed Eli with bronchiolitis, which is a common illness of the respiratory tract that is caused by an infection (in Eli's case a virus) that affects the bronchioles. As the airways become inflamed, they swell and fill with mucus which leads to breathing difficulty. The doctor said the virus takes about two weeks to run its course and the only thing to do is wait it out. Luckily, the worst days of the virus are 3-5 and she assumed Eli must be right in the middle of that period. 

That's an IV on his arm, not a cast.  

The next morning, Eli was doing much better and so was I. He had pulled his oxygen off at some point during the night and was able to maintain his oxygen saturations. His fever had also broken on its own. With his condition much improved, the doctor said we would be able to go home that night. Our little ER experience wasn't too bad, but we sure don't want to end up there again!

The next few nights we had to put Eli on oxygen while he slept because he started to get more congested and had a hard time breathing. Eventually his congestion cleared and it's now been over a week since we have had to give him oxygen. We're hoping at our next pulmonology appointment that we will officially be done with the oxygen!

Eli is such a sweet-tempered, easy baby. He doesn't cry much and is so patient. When he wakes up, he will be quiet in his crib for a little bit and then make these cooing noises until we come get him. He's the best! He is a pretty serious baby, but we manage to get a few smiles out of him.

Read More

Instructions for Coming Home

The past few weeks have been great! Busy, but great! We thought we understood what it would be like to have him home, but we didn't realize just how much work it takes to be a NICU nurse. We appreciate all of the nurses (over 40!) who took care of Eli!

About 2 1/2 weeks ago (April 2), I went in to see Eli and ended up staying at the hospital for the next 5 days. The doctors really wanted us to be able to take him home, but Eli was still choking on his bottles. He wasn't having this problem when breastfeeding, just bottle feeding. So, the doctors decided to do a trial run: have Jason and I spend five days/nights in the hospital with Eli to see if he could gain enough weight just by breastfeeding (most preemies can't gain weight without having a few bottles of fortified breast milk.) During those five days, we did everything the nurses had been doing for the past three months: changed his diapers, fed him, took his temperature, gave his medication, changed and monitored his pulse oximeter, and monitored his oxygen. It was so fun being with him 24/7; the only hard thing was that his alert time was from about 2 am to 6 am . . . and we were all together in one tiny room. We basically got zero sleep over those five days and I don't think I left that room more than four times. Once the five days were up, Eli had a net weight gain of 4oz and he didn't have any bradycardia episodes so we were free to go! Eli is the first baby in the entire 12 years that the NICU has been open to go home solely breastfeeding. Everyone was impressed.

It was bittersweet leaving the hospital that day. Bitter because we built such a great relationship with all of the NICU staff and sweet because we were finally taking him home after 104 days! I cried the whole ride home. I think it was a combination of disbelief, happiness and sleep deprivation. We never thought this day would come and all of a sudden it was happening. 

We were given SO much information as we were discharged. Eli has a lot of doctors to follow up with in the coming weeks (cardiologist, pulmonologist, pediatrician, occupational therapist, etc.) and there are medications and supplements he will be on for the next little while. Eli also came home on oxygen so that has been a challenge. It feels like we can't move him around very much because he is always tethered to his oxygen tank. Eli also has a monitor that is constantly reading his blood oxygen saturation and heart rate. In a way it's kind of nice to know something will beep at me in case anything is wrong, but it also beeps when nothing is wrong like if he kicks his feet or if I pick him up. It's like the boy who cried wolf: it will start beeping in the middle of the night and either Jason and I will get up to go check on Eli and as soon as we are out of bed, it stops beeping. But beeps or not, we are happy to have our little boy home safe and sound with us! 

As much as we would like to have visitors, we won't be able to for a while. The doctors have told us that Eli needs to stay as healthy as possible so that as he grows, healthy lung tissue will grow to compensate for the scarred lung tissue he currently has. The past three months have been extremely hard on his lungs because he was ventilated and needed constant oxygen support. So, we have to be extremely careful with what he comes in contact with. A lot of preemies with respiratory issues can end up back in the hospital and on a ventilator with just the common cold. It will take several years for Eli to be strong enough to handle getting sick. Unfortunately, that means no church, public places or visitors for at least his first year of life and every winter until he is 3 or 4. It's definitely going to be a challenge and it's hard to stay inside and not show off our little one because he's so cute! :) 

So many people have sent us quilts, clothes and letters during these past 4 months and we appreciate it so much! The blog posts may not be as frequent now that he's home and there's not as much to report, but that's a good thing! I think we are ready for a little bit of boring :)

Read More

Here He Comes: The Birth

Disclaimer : this is a long post! I finally wrote everything down that happened the day Eli was born - I won't blame you if you don't read the whole thing :)

Christmas Day was a crazy day to say the least. But really all of the festivities started on Christmas Eve. Jason's family came to the hospital to bring us a nice dinner. The hospital food was ok, but it paled in comparison to the steak dinner they brought us—thank you! As we were enjoying our meal I was steadily having more and more pain. The nurses strapped me on to the monitors to see what was going on. After a few minutes it was clear I was having large and more frequent contractions. As the pain got worse, Jason's family left so I could rest. It seemed like the doctors always had solutions to stopping contractions. I had been on this medication called procardia while I was on bed rest that slows contractions. When these larger and more painful contractions began, the doctor prescribed a round of shots (can't remember the name) that also slow contractions. After two of these shots, my contractions really slowed down. I went to sleep feeling like we dodged a bullet and I was going to be fine.

On Christmas Day, Jason and I woke up at around 8:30 AM and started opening up our gifts. We were FaceTiming Jason's family while we opened our presents. They would have come to the hospital but Jason's brother, Brandon, is currently serving a mission in Argentina and they were unsure of when he was going to call home, so they stayed to make sure they didn't miss it. I was feeling some light contractions, but I had not taken my procardia yet so I figured it was because it had worn off. I opened up all of my presents, and took a quick bathroom break. When I stood up, I felt a strange pressure. I went to the bathroom, looked down and saw this bluish purple colored something starting to bulge out of me. My first thought was that the umbilical cord was coming out, but then I thought no, that's impossible because my water hasn't broken. I started to panic and yelled out for Jason. He abruptly hung up on his parents and also saw what was bulging out of me, and the look on his face confirmed to me that whatever was happening wasn't normal. He ran out to the hallway to find someone and I pulled the emergency switch in the bathroom. In about 5 seconds, 4 nurses came running in and quickly got me back to bed. After laying back down whatever was bulging went back inside and the nurses didn't get a look at it. I guess we looked pretty worried because the nurses tried to downplay what happened telling us that it was probably a hemorrhoid. They couldn't see anything, but just to be sure they called the doctor. She was in an emergency c-section and wouldn't be able to come down for at least another 20 minutes. I was hooked up to monitors once again and they found the baby's heart beat and also my larger contractions.

I hoped when the doctor came everything would be fine and I could continue being on bed rest. She came in, took a quick look and said I was fully dilated and that whatever had been bulging out of me was the bag of water. She told me I would be having an emergency c-section and my baby would be delivered immediately. So much emotion came over me in this moment. I was extremely nervous for the baby and hoped that the week I stayed on bed rest was enough for him to make it. I called my parents to let them know what was going on. They told me everything was going to be ok and I was strong and could make it through this.

I was wheeled over to Labor and Delivery and saw some of the nurses that took care of me when I was first admitted. When they heard I was coming to L&D, they said a prayer together for me. Jason also gave me a blessing - the nurse even tried to join in :) The doctor doing the c-section (who unfortunately wasn't my OBGYN - she was on vacation) wanted to do a loading dose of Magnesium to slow my contractions during surgery. This time was different than the first time I had Mag. Since the nurses were rushing to get me ready for the OR, they let the IV drip the Mag into me as fast as it could go - it took about 5 minutes. The next 15 minutes were the worst minutes of the entire delivery. Right as the IV finished I started to feel the effects of the Mag. My whole body felt like it was on fire. My mouth, nose and eyes were dry and hot. Jason got cold cloths to put on my head and chest to try and cool me down but at this point there wasn't anything anyone could do. I felt delirious and started getting really nauseous. My whole body ached and I felt like I couldn't move. The nurses started wheeling me down to the OR and that's when I lost it. I felt my water break and with Mag in my system it burned. I'm sure I freaked out the other women who were in L&D. Jason said people were opening their room doors to see who was making all the noise. Unfortunately, they made Jason stay back in L&D until I was prepped for the c-section so the last thing he saw was me writhing in pain. Poor guy.

About 5 minutes after arriving to the OR I felt much better. I felt bad that I was at my very worst when Jason last saw me. The epidural was a breeze after Mag. It is such a strange sensation to be completely numb from the waist down. The anesthesiologist kept pinching me to make sure I couldn't feel anything. After I was all prepped, a bunch of people came in - the OB with her nurses, the neonatologist with his nurses and other people that were doing something I don't know what. There had to be at least 15 people there. All of these people for one little baby.

The doctor started the c-section. I didn't realize it took so long for them to get to the baby. I was used to watching a baby story and having it only take 30 seconds to pull a baby out. I asked Jason to look over the screen and see what was going on. He didn't want to, but he did for me (after studying cadavers I've always been curious to see what I look like on the inside—weird, I know.) His eyes got really big and all he said was "whoa." During this first part of the surgery, the doctors were talking about Christmas and movies. I didn't understand how they could be so calm. 15 minutes later, the neonatology team started to move in and the doctors stopped making small talk. The anesthesiologist started giving me a play by play: "I see a little foot! Oh, and there's his hand he's a fiesty one! He just peed all over you!"All of a sudden I see the neonatologist holding the teeniest baby I have ever seen. He was quickly surrounded by the team of nurses and they started working on him. Before he was intubated, Jason and I heard him give out a small little cry. I kept looking over trying to get a look at our little boy. Someone moved out of the way and I saw that our baby was inside a plastic bag. I remember the neonatologist told us that they would be putting him inside a bag because his skin was too immature to maintain his own temperature and the bag would act as a second skin to keep him warm until they got him to the isolette. After he was stable and all wrapped up, the neonatologist brought him over to us so we could see him and take our first picture together.

I remember wanting to touch him and hold him, but being scared because he look so tiny and fragile. Everyone kept asking us what his name was, but Jason and I were still deciding. We thought we had 14 more weeks to figure it out! So for now he was known as baby boy.

After a few minutes, Eli needed to go down to the NICU. Jason met up with his dad outside the OR and walked down with Eli while I waited to get stapled back together (such a weird feeling!) Afterwards, I went back to labor and delivery for an hour or so to make sure I was stable. They started me on an IV of pitocin to help my uterus contract down in size—definitely not the best feeling, felt like cramps on steroids. Jason's family came in a few minutes later and all of them had this dazed look on their face like, "what just happened?" The last update they got was a text from Jason saying I was going in for an emergency c-section. It was pretty amazing how fast it all happened. From the time my bag was bulging to the time Eli was born was about an hour.

Before I was taken back to antepartum ward, the nurses wheeled me down in my bed to the NICU to see the baby since I was going to be confined to bed for the next 24 hours. I was nervous to see him again because it seemed impossible for a baby so small to live. Jason was there with me. Eli looked so teeny in his isolette, weighing in at only 2 lbs 7.4 ounces. He was long and skinny and his skin was all wrinkled. He looked like a little old man and had tubes and wires all over him.

A few hours after arriving to antepartum, a lactation consultant came to help me start pumping. Breast milk is so important for these premature babies. Doctors consider it part of their medicine because it is full of so many good things that cannot be replicated. Eli had to have some donor milk for his first few feedings until my milk came in. I'm grateful to those women who donated their breast milk and I plan on donating as well.

Jason and I had a hard time picking out his name. We both had names we really liked but neither of them seemed to really fit. We went back over our original list of names and read each one while we looked at a picture of him. I think we finally decided on Eli the day after he was born.

Thinking back now, it seems surreal that all of this ever happened. I'm so grateful that Jason's parents were here to support us and that my parents were able to drive down right after he was born to be with us too. We have such great family and friends and know that without your faith and prayers, Eli would not be where he is now.

In both pictures, Eli is holding Jason's wedding ring. Left - first week. Right - 3 months old. 

Read More

Almost Homeward Bound

Ever since Eli started nasal cannula he has been progressing very quickly! Here are the big milestones he's achieved in the past 2 weeks:

Breastfeeding - Eli can breastfeed like a champ! He has always loved his pacifier and that seemed to help him transition well into breastfeeding. Since it's hard to know exactly how much he's eating, the nurses weigh him before and after he eats. The first time we weighed him he took in 90mL! That's a lot of milk for him because he is usually tube fed 63mL every 3 hours. We thought it was a fluke so we tried again the next day and he took 70mL! We are so happy that he can successfully breastfeed. Almost all premature babies are unable to get enough volume from the breast because they have to work so hard to get it. It doesn't seem to be a problem for Eli! He does, however, have a harder time taking milk from a bottle. The occupational therapists have been trying to find a bottle with a flow that works best for him. In order to come home, Eli needs to take all 8 of his feedings in a 24 hour period by either breast or bottle. He is well on his way!

Breathing - just today, Eli was switched from a high flow cannula to low flow. On the high flow cannula, Eli started at 30% oxygen at 3 liters per minute and was weened down to 30% oxygen at 1 liter per minute. With low flow, he receives 100% oxygen at .2 liters per minute. He is doing so much better on this setting and is able to keep his oxygen saturation high! We anticipate that Eli will be on oxygen for a little while after he comes home. Ideally, the doctors want the settings to be 100% oxygen at .1 liter per minute, so we are almost there!

Grandma took this cute picture while looking in on his webcam. 

Bath - with his central line removed and being on nasal cannula, Eli was able to have his first swaddle bath from us! It was probably the cutest thing I've ever seen. He didn't cry at all but just seemed happy to be there in the warm water. Watch the video below to see his reaction:

Update: Here's another video of Eli getting a bath. It's our favorite thing to do! :)

Read More

Grandparent Love

Eli has been showered with lots of grandparent love this week! 

Grandma Orme held him the first time – Grandpa Orme will hold him as soon as he gets back from his trip!

My parents came into town this last week. The nurses took the CPAP off so they could snap a quick picture all together. 

Typically, the NICU won't let anyone but parents hold when the baby is on the ventilator or CPAP. They want the baby to be more stable and on nasal cannula before letting other family members hold. Luckily, the nurses made an exception and let my parents hold Eli since they were only going to be in town for a few days and we didn't know when Eli would be put back on nasal cannula.  

Today, Eli was put back on nasal cannula! So far he is doing well and we hope he won't get tired out from losing the pressure of CPAP. Also, Eli's broviac was removed on Sunday! It is so nice that there isn't anything invasive going into Eli. He is starting to look and act more like a real baby.

Thank you, as always, for all of your prayers and support. Eli is truly our miracle baby and we are so blessed to have him as our son. 

Read More