Day 10: Weight Gain and More Food!

I want to start out by saying that we have really found a sense of peace about Evelyn’s brain bleed. The doctors also told us that she doesn’t have a risk of blindness because she was not hooked up to oxygen. They will not do a retina test until 32 weeks.

They increased her food by .5ml every hour. She is now getting 6.5 ml every hour. That is 19.5 every 3 hours! The neonatologist informed us that a lot of babies her age do not handle the increase of food once it is at that level. I called this afternoon to check in on her. No spit ups!! She is handling her new level of food.

She gained 30 grams!! Evelyn now weighs 990 grams! That is only 20 grams/ 3% less than her birth weight.

Our nurse today was great! I hope we have her all the time. We found out (because of our last name) that we have a lot of mutual friends!

People keep asking how we are doing. It is the hardest questions I’ve ever had to answer…so for now I will say tired. The hardest part for me (Lesley) is wanting to be with both of my babies at the same time. There are moments when all you can do is cry and those are good moments to rely on each other and God. There are moments where we are overflowing with joy and gratitude for how this situation is turning out. Being a NICU parent is the hardest most humbling experience I’ve ever had.

Day 9: Gaining Weight and Brain Ultrasound Results

Today has been a hard day and it is only noon.

We got to the hospital and found out the Evelyn only had 1 spit up over the night! She also has gained 30 grams! Another 50 grams and she will be at her birth weight! God is good and faithful. We also found out that they did her brain ultrasound at 5:30 AM.

During rounds, the doctor informed us that Evelyn does have a brain bleed. Thankfully, it is only a level 1 bleed and on the left side. It is so mild that the doctor didn’t notice it at first. The left side of the brain controls motor development. However, research shows that a level 1 bleed does not increase her risk of having mental or physical disabilities over her risk from just being a preemie. I guess you could say that if you are going to have a brain bleed, this is the one you want.

We were reassured that it is possible that full term babies can get level 1 bleeds and that it can happen inside the womb. These bleeds normally work themselves out by 34 weeks gestational age. They will keep a close eye to make sure she isn’t developing a larger one. She will also have an appointment with a specialist at 3 months (corrected age) to see if she has developmental issues.

We are choosing to be joyful in this situation. God is good and Evelyn is doing so much better than she could be. We are so thankful for all of you praying. We know God hears those prayers and that Evelyn is doing so well because of them.

Day 8: Feeding Schedule Change

Evelyn is still doing great. She is still breathing on her own. Last night she had 1 low heart rate, but that is to be expected with preemies. She has been spitting up with her feeds since increasing it to 18ml every 3 hours and feeding over a 1.5 hour period. The neonatologist decided it would be best to give her constant food. Now she will be receiving 18ml over 3 hours, or 6ml per hour. When one feed is done they start the next one. This way her stomach is never empty while she is learning how to digest food. Babies practice this in the womb, but since she didn’t get a chance to do that, she needs to learn it now.

It was kind of disappointing as she had been gaining weight the last two days and today she lost weight. The weight loss could be due to a number of different things. She was moved to a newer style isolette so she is now being weighed on a different scale. She is also spitting up which could cause weight loss and she is starting to have regular bowel movements (they’re no longer tar). The doctor isn’t worried about the weight loss and mentioned that most preemies don’t start gaining weight until around day 14. She is down to about 1 lb 12 oz. Teeny tiny little sweet heart.

Lesley was able to hold Evelyn for a little over 3 hours today. I was able to hold her for about 15-20 minutes to give Lesley a break. Evelyn really enjoys being held.

The nurses did tell us that Evelyn did have one instance of a low heart rate at some point last night. They had to come in and touch her foot to make her remember to breathe again. They are giving her low amounts of caffeine to help with that and this is the first time that’s happened. Apparently this is normal and expected to happen with a preemie but we were both concerned about it.

When we visited later this evening, I asked the nurse if Evelyn had any more low heart rate events and there were not any. I was able to hold Evelyn for about an hour. During this time, she was very very active and alert. She had her eyes opened and looked around almost the entire time. Many times she stopped looking around and just stared at me. It was cute. She also was moving her head around looking to feed/suck on something. I gave her the tip of my pinkie and she started sucking on it so I grabbed her tiny little pacifier and she chewed and sucked on that for a little while. Sucking apparently doesn’t usually show up until around 32 weeks so we’re hoping maybe she’ll learn how to do that sooner.

Our main concern for tomorrow is the brain ultrasound. They will do a scan of her head to make sure there are no bleeds. The neonatologist isn’t worried about there being one. If there is it will be small. We are praying that there will not be any bleeds and that she will start gaining weight.

Day 7: 1 Week Old!

According to the hospital, Evelyn was 29 weeks old yesterday, but chronologically, Evelyn is officially 1 week old today. It’s been a very long week.

We made it to the hospital literally 2 minutes after the doctors had come through for rounds. Kinda of disappointing, but the main neonatologist came back around and gave us an update on Evelyn. Not much had changed except that they raised her prolacta added to her feeds from +4 to +6 to try and get more calories into her. Since the increase to 18ml, she has been spitting up more so they made decide to do something different with her feeds — they have extended her feeds from 18ml over 1 hour to 18ml over 1-1/2 hours.

Lesley was able to hold Evelyn for about 2.5 to 3 hours. I held her for about 20 minutes somewhere in there. Eleanor came with us to the hospital and did OK for most of it except for a minor screaming fit in the room. She hadn’t take a nap and we had been running around the hospital, outside in the park area and inside looking at all of the things they have to distract kids. I took her for a drive in the car and she was asleep almost instantly. We didn’t go back down to see her last night and went to bed early so we could get a fresh start for tomorrow.

Day 6: More Food, No IV, No Tanning!

Today was a good day. Evelyn Joy is 7 days old today and is officially 29 weeks! Happy one week of life!

For the second day she is finally gaining weight instead of losing it! She still hasn’t caught up to her birth weight. The nurses took her feeding tube out of her mouth and put it in her nose. They are hoping that her spit ups are due to her gagging on the tube. The spit ups aren’t a cause for concern and aren’t happening all the time. The lights were turned off today! The IV was removed from her arm! Our sweet baby only has the feeding tube and the wires monitoring her heart and blood pressure. The doctors are happy with her progress. She gained about 15 grams and they have increased her feedings up to 18ml per feed.

The next big thing to be praying about is this coming Tuesday. Evelyn will have an ultrasound done to make sure she doesn’t have any brain bleeds. The neonatologist (a pediatrician who receives more education to work primarily with ill or premature newborn infant) reassured us that it is unlikely that she has one. If Evelyn does have a brain bleed it would most likely be a minor one.

We asked today what Evelyn’s immune system would be like at gestational age of 40 weeks. Much to our disbelief, the neonatologist informed us that she will be considered a preemie until the age of 2. Due to how early she was born, 28 weeks, she will have the immunity of a preemie until the age of 1. She recommended that we do not take Evelyn anywhere for the first year of life. No church, no store, no park, nothing. A little sniffle for Eleanor can be a month stay in the PICU on respiratory machines for Evelyn if she catches it. We will learn more about the do’s and don’ts of a 28-week old preemie closer to discharge.

I did get to go back this afternoon while Nate had Eleanor. I held Evelyn for a while and hopefully Nate will be able to go and hold her tonight.

On another note we were fortunate to be able to take a break for a few hours to go to Cali and Asa’s wedding reception! Nate made it to the church for the wedding just as Eleanor fell asleep. He was disappointed that he couldn’t see the wedding but didn’t want to wake Eleanor up because her naps have been few and far between. Therefore, what God has joined together, let no one separate. Congrats to them, Nate and I are excited for Asa and Cali’s future together. As a side note, Eleanor loved the reception…and all of the candy and music!

Big sister Eleanor loves to visit baby sister Evelyn <320160822_185309359_iOS

 

Day 5: More Food, Removed IV and Vapotherm

 

Evelyn without her vapotherm nasal cannula and no goggles!

Evelyn without her vapotherm nasal cannula and no goggles!

 

I praise you because I am fearfully and wonderfully made.
– Psalm 139:14

What a wonderful God we have. Throughout this entire pregnancy, we were reminded how much God loves us and how we are in His hands. Today was no exception of His great love and mercy for us. We are praising Him in the good moments and trusting Him in the hard.

They decorate the room with cute signs that have her name on them.

They decorate the room with cute signs that have her name on them.

This morning we walked into our daughter’s room and there was another child in there. “Where is my daughter?!” I asked. As I had a mild heart attack, I remembered they told us on a late night phone call last night that she was doing so well that she may be moved to another room. She was doing so well that if another child came into the NICU, she would be moved to the mid-level “sub-intensive” NICU. Children’s has 3 levels of NICU and she is currently in the middle level. Once we made it to Evelyn’s new room, we saw they made her another sign. The nurses make these adorable signs for all the babies.
I got to do kangaroo care (skin-to-skin) with Evelyn for two hours today. They want to keep her under the lights for most of the day until her bilirubin goes down. Tomorrow is her last day of “tanning” (as we call it) under the blue LED lights. We’re excited to find out where her levels are tomorrow and get to see her with her goggles off all of the time.

Day5-3A social worker came in and talked to us about all the options and plans that are available for Evelyn. Due to her birth weight, she is actually considered eligible for disability. If her stay is longer than 31 days, she is also eligible for institutionalized Medicaid. Basically it’s Medicaid that is made for those who can’t pay for the service themselves. We have private insurance but this is just another avenue in case there are tests or procedures not covered by Medical Mutual.

Day5-4Day5-5

Rounds today were much later than expected. We had grown accustomed to the 10am-11am rounds on the intensive side of the NICU and weren’t sure when to expect rounds on this side. We immediately noticed that the respiratory therapist doesn’t make separate rounds in the sub-intensive side. They moved her feedings up another 3ml to 15ml per feed. The light therapy is still scheduled to be removed tomorrow. The doctor said that she is looking good and they completely removed her nasal cannula hooked up to the vapotherm machine so she’s now receiving no breathing aid or positive pressure at all. They also surprised us by authorizing the removal of her IV.

We went back and visited her later in the evening because Nate wanted to hold her and we wanted to see if the IV had been removed. We noticed immediately that the IV machine was gone and there was just a capped IV in her arm. So exciting! Nate was able to do skin-to-skin with her and hold her for about an hour. He left very happy that he got to hold Evelyn for the first time.

Nate holding Evelyn for the first time.

Nate holding Evelyn for the first time.

Day 4: Feed Increase, Pressure Decrease, Anniversary!

Happy anniversary to my wonderful husband! Four years now!

Getting to hold Evelyn for the first time.

Tiny tiny hands

Today was a great day. I was able to hold Evelyn for the first time and my mommy heart was overflowing with joy (Evelyn Joy)! She lifted her little arm and put it on my neck and had her eyes open and it seemed like she was looking at me for a long time. She cuddled so close for about an hour and it was just a great feeling.

When we arrived at the NICU this morning, we found out that she pooped! We’ve never been so excited about someone pooping before! Nate even made a Facebook status about it and was disappointed that he couldn’t get a picture of it to document her first bowel movement. But while I was holding Evelyn for skin-to-skin, she had a major blowout! Nate made sure he got a picture and made me put it up for everyone to see. He’s so proud of his baby’s excrement.

Evelyn's second poop!

Evelyn’s second poop!

The doctors decided to move her from 9ml to 12ml of milk every 3 hours. They reduced her fluids because of the increase in milk. They also reduced the pressure in her nasal cannula from 4 to the lowest level at 3. She has been breathing on her own since she was born. We didn’t hear anything today on what her bilirubin levels were but we are on day 3 of light therapy. She loves the lights and it always looks like she’s tanning.

So cuddly!

Later on in the evening, I called to check in on her and see how she was doing. I was interested to see how she was taking her increase in feeds because she had some issues with spitting up on a feed or two overnight. She had only one minor spit up and had been taking her 12ml feeds well.

The evening nurse that I talked to was the same one who had been there the night before. She told me that Evelyn might change rooms soon. At first, I thought something might be wrong and asked why, thinking that maybe the person next to our room had a brother or sibling that needed to be near them. I was told that Evelyn was doing so well with breathing, eating, and her general health that, as soon as her room is needed for a more urgent case, she is to be moved from the intensive NICU (where there’s only 23 rooms) to the sub-intensive NICU across the hall! Praise the Lord for how well she is doing!

Day 3: Feed Increase, Levels Decrease

We are blessed to report more good news today and some prayer requests about upcoming tests.

We learned from a nurse today that there is some concern about sight issues in preemies as the blood vessels do not have time to grow around the eye before they’re born. Once they’re exposed to oxygen, the blood vessels grow quickly and can caused sight issues. There are some procedures that can stunt this growth but it causes issues with peripheral vision and things like that. The eye exam is around 32 weeks (in about a month). Please pray that her eyes develop like they should.

We also learned that next Wednesday (August 31) will be her ultrasound to look for brain bleeds and any kind of neurological issues. If she has a brain bleed, there is a good chance she could have developmental delays, physical handicaps or cerebral palsy. Please pray that there might be zero brain bleeds or other issues with her physical development.

During rounds this morning, we learned that Evelyn’s feeds had been going well except she had spit up for a couple of them. We personally thought that it was because one of the nurses had been feeding her a little fast and the night shift nurses had switched her over to a standardized pump that feeds her over a period of an hour. That has been working well.

Day 3: Mouth Breathing

Evelyn sleeping with her mouth open

 

 

We were able to take some really good pictures of her with the door open, light therapy off, and her hat off. She’s been breathing through her mouth a lot which is why her mouth was open in this picture.

The doctor increased her every-three-hour feeds from 6ml to 9ml. Her bilirubin levels were down in one day from 6.8 to 4.9. Still elevated but going well. She is on day 2 of 5 of the light therapy. They decreased her IV fluids again because of the increase in feeds.

The biggest excitement for us was learning that her stomach IV was to be removed and we could finally hold her! I think learning this overshadowed how much of a big deal this was — according to the doctors, typically a preemie progresses from a UVC (umbilical venous catheter) which is a catheter placed in the belly button area, to a PICC (peripherally inserted central catheter) line inserted in her arm, to a standard IV in her arm or foot. Evelyn completely skipped the need for a PICC line, partly because she is doing well and partly because Lesley is providing enough milk for them to fortify the milk and feed it to her through the feeding tube.

Never have we been more anxious or excited to find out if someone poops! No poop today but we’re hoping for something tomorrow.

We called throughout the day to find out when her UVC would be removed. It was taken out around 5 but we weren’t able to go until later in the day. We were both tired so we visited for a while with her and chose to hold her early the next day. We both decided it would be wise to be fully awake and not tired while holding a preemie.

 

Day 2: CPAP Gone, Fluid Reduction, Feed Increase

Today we visited with Evelyn in the morning/afternoon. We were able to be at rounds which happened around 10:30am. We spent a good portion of the day talking to the insurance company about what they’d cover for renting a preemie hospital-grade breast pump (usually costs like $2000). But that’s another story.

Day 2

Lesley admiring Evelyn’s new tanning bed.

Praise God for more good news today. We had originally thought that the doctors would reduce her CPAP pressure down to 3, but they said that she had been breathing “room air” since she was born so the CPAP wasn’t necessary anymore. It was only a precaution in case she had trouble breathing. They authorized a change to remove the CPAP and replace it with the standard nasal cannula style of oxygen tube and set the flow to 4.

Her bilirubin levels were quite elevated at 6.8 which means she has jaundice, which is expected because she’s a preemie. Her skin was very red because she wasn’t clearing out red blood cells. They decided to put her under the blue lights for 5 days. She seems to be enjoying it as every time we see her she’s stretched out and it looks like she’s tanning. They put the goggles on her to protect her eyes. She doesn’t like them and keeps trying to pull them off. Much to the dismay of the nurse, Evelyn has been successful in sliding them off a few times.

Lastly, her feeds were increased from 3ml on Monday to 6ml today. We were told that the progression by 3ml is standard as long as “mom” could produce. The doctor didn’t want to increase her feed amount by that much because he didn’t think Lesley was able to supply that much milk. When we told him how much she was getting per pumping session, his jaw dropped. Lesley told him that she also nursed Eleanor up until Evelyn was born and he immediately authorized the feed increase. They also reduced her IV fluids to accommodate for the increase in feed size.

No poop today. We called a couple of times in the evening to see if she had but there wasn’t any change there. She has peed many times though!

Just a side note here because this is something Lesley and I had discussed. We hadn’t really planned on getting pregnant again so soon. But God had other plans…and because Eleanor and Evelyn are so close in age, Lesley was still nursing Eleanor while she was pregnant with Evelyn. If Eleanor had been any older, she wouldn’t have been nursing anymore and Lesley’s milk production would have had to start completely over so Evelyn wouldn’t have much milk to eat. Instead, Evelyn was born when Eleanor was 14 months so Lesley has been able to provide over and above what Evelyn needs right now. Just another thing that God has had His hand in providing for Evelyn.

 

Day 1: Hospital Discharge & Seeing Evelyn

The morning and early afternoon at the hospital was relatively uneventful. Lesley got her legs back and was in a some discomfort because her stomach muscles had been constricting and stretching a good portion of the day on Sunday. I had to help her move around some but towards the middle of the day, she was doing better moving around.

I had spent the night at the hospital the night Lesley gave birth to Evelyn. The pull out couch was way more comfortable than the little reclining chair in the tiny room that I slept in when we had Eleanor. Lesley woke up every few hours to pump and  talk to nurses and doctors who came to check on her. In the morning, she asked a nurse and a doctor if she could be discharged today because she was feeling better (no signs of infection) and didn’t have a baby in the room that they needed to monitor. The doctors agreed and tentatively left the discharge time around 7pm.

I left the hospital around 10:30am to go home and see Eleanor. She was super happy to see me. I showered, fed her, and came back to the hospital. I wheeled her into the hospital room in her wagon. Lesley had eaten lunch and saved some for Eleanor, who was super happy to see Lesley. Shortly after, we packed up some of the things in the room and put them in the wagon. Then we headed off to the NICU.

Upon arrival, Eleanor had fallen asleep so I carried her into Children’s. The elevators there have little kids announcing the floor number and direction so that woke Eleanor up. We made it into Evelyn’s room and were told that not much had changed from the previous day.

Evelyn with CPAP

Evelyn had the CPAP machine fitted and it was blowing around 21%-23% oxygen which is 2% above “room air” (the standard oxygen content in the air that you and I are breathing right now). It fluctuated based on her oxygen absorption but most of the time it was at 21%. The CPAP flow was set to 4. I learned that the lowest setting was 3 and the highest setting was 9. They had increased her feed from 1ml (on the day she was born) to 3ml. We were able to hold her hand and talk to her for a few hours until Eleanor didn’t want to be there.

We found out that rounds happened in the morning and that’s where we find how how she’s doing and where the doctors make decisions on how they should proceed with her care. We had been in the hospital that morning so we didn’t know that they had increased her feed from 1ml to 3ml.

We packed up and headed back to the hospital around dinner time, planning on getting ready for Lesley’s discharge. When we arrived, we were told that her discharge orders had come through and she could leave right after dinner. I frantically packed up as much as I could and threw it all into the wagon. One of the nurse techs offered to help wheel some things out and we were off by about 6pm.

When we arrived home, Lesley focused on getting settled back into the house after not being there for over a week. Later that evening, we went back to the NICU to visit Evelyn. We found out that she had been at 21% oxygen (“room air”) and had been there without any kind of issue for most of the day. Nothing else had changed but we had a good time talking to her and watching her move around.