The Worst 10 Days of Our Lives

Ok, deep breath, here it goes...

So one of the unfair facts of life when you're a 2nd child is that you have an older sibling, who is possibly in daycare & carries around all their older sibling germs. Due to this fact, Brooklyn got her first cold at 6 days old. Not fair! Of course, for this reason we were keeping a very close eye on her. I took her to the doctor three times in one week. The doctors kept checking her out, saying she was fine & to just keep doing what we were doing (steam bathrooms, bulb suction her nose, having her sleep elevated). I remember taking her to the doctor on a Thursday. It was a double appointment because both girls had a cold. The doctor checked Abigail out, determined she had a sinus infection, but then suddenly got pulled out of the room to take a phone call. 20 minutes later she came back in the room to examine Brooklyn, but was very rushed and distracted. They had checked Brooklyn's oxygen level, and it was fine, she said her lungs sounded fine as well, the noise was all coming from her nose. So again, we went home. Over the course of the weekend Brooklyn seemed to be getting more congested. Looking back I wonder if the doctor had paid closer attention to Brooklyn, if she could have been diagnosed sooner, however hindsight is always 20/20.

On Friday, I scheduled a follow up appointment with Brooklyn's primary doctor for Tuesday Feb 28th. This was a "just in-case" appointment, in-case Brooklyn hadn't kicked her cold by then. I have never done such a thing before - scheduling a sick appointment in advance. I'm not sure what prompted me to do it. I'm actually pretty sure it was God's voice telling me I'd need that appointment. Monday night Brooklyn took a turn for the worse. She spit up her entire feeding that night & mixed in was a bunch of green mucus. She was showing some signs of labored breathing and just seemed generally worse. Luckily our doctor appointment was scheduled for 8:30 Tuesday morning.

Tuesday-  Day 1:
When I took Brooklyn in to the doc's office, they immediately checked her oxygen level. This is standard when you have an infant this young with a cold. The nurse said to me, "No. That's not right. This thing isn't picking up correctly." She tried another spot with the oxygen sensor, and got the same reading. 84%. People should always be at a 98-100% oxygen level. Sometimes, in your sleep, it could drop as low as 90%. Brooklyn was wide awake and staying around 84-87%. This was very bad. In fact, even though I hadn't noticed because I'd been around her and it was subtle, she was slightly blue. The nurse immediately called the doctor in and they immediately put Brooklyn on oxygen, holding a tiny mask up to her mouth. She turned pink when I hadn't realized she was blue. My heart sank! The doctor explained that Brooklyn needed to go to the hospital, and that we needed to be transported by ambulance. This was because Brooklyn needed to stay on oxygen to keep her oxygen level up at 100%.

Brooklyn in the Ambulance

Luckily Abigail was at daycare, so I didn't have to worry about childcare for her during this time. Brandon was at work and I called him. I tried to calmly explain what was going on and that I was going to be riding in an ambulance with our 19 day old infant to Children's Hospital. I can't imagine what he felt during that time. The doctor's office called 911 to get our ambulance.  Two men came in with a stretcher and strapped Brooklyn in her car seat to the top of the stretcher. I still remember people's faces in the waiting room as they wheeled her out with me walking alongside, holding the oxygen mask up to her face. They all saw how tiny she was & had the saddest eyes. I had the task of holding the mask up to her mouth and I'm glad for that because it kept me distracted from my emotions. I rode in the ambulance for 45 minutes to Seattle Children's Hospital. During the ride, the nurse in the ambulance was trying to make me feel better by saying things like, "Well my hunch is she has RSV. And don't worry, I've never seen a kid die of RSV. Pneumonia, yes, but not RSV." I just thought, wow! I hadn't even considered that she might die! But now I was worried...what if she had Pneumonia? She's only 19 days old...it could kill her!

Brandon met me in the ER. There was a team of, I don't know how many, maybe 6 doctors/nurses working on Brooklyn all at once. They all looked the same, because they were all wearing yellow gowns and masks. And people kept coming up to me asking me the same questions. It's pretty hazy to try to remember everything that happened in the ER. They moved so fast and did so much to get her stable. They had to suck snot out of her nose with a medical suctioning device and they all seemed to be shocked by how much she had clogging her airway. No wonder her oxygen was low!! They gave her I don't know how many pokes and ran a bunch of labs, all I really remember was she was positive for "RSV", and most likely did not have Pneumonia. I felt a half sigh of relief that she probably wasn't going to die (thanks ambulance nurse!). When things calmed down a bit, I took a break for the bathroom. Up until that point I hadn't broken down at all. I had a mini 30 second meltdown in the bathroom, pulled myself together and returned to the ER room with bloodshot eyes. At one point I asked, "So is she ok, or will she need to be admitted?" The ER doctor looked at me as if he was surprised I didn't know, "She's definitely being admitted. She'll need to be here at least a couple days. They're just getting a room ready for her and then we'll move her." I couldn't believe it. Couldn't believe my healthy, full term baby was needing hospitalization at only 19 days old.

Brooklyn in the ER

Respiratory syncytial (sin-SISH-uhl) virus, or RSV, is a respiratory virus that infects the lungs and breathing passages. Most otherwise healthy people recover from RSV infection in 1 to 2 weeks. However, infection can be severe in some people, such as certain infants, young children, and older adults. In fact, RSV is the most common cause of bronchiolitis (inflammation of the small airways in the lung) and pneumonia in children under 1 year of age in the United States. In addition, RSV is more often being recognized as an important cause of respiratory illness in older adults.

source: http://www.cdc.gov/rsv/

Being transported to hospital room

I know at some point somebody called my mom and told her what was going on and could she please pick Abby up from daycare. But I don't remember who it was or what was said. I was so focused on the crisis. I'm so grateful that my mom just stepped in at a moment's notice and I didn't have to worry about my older child. What a blessing!

When we got to Brooklyn's hospital room I was so impressed. The hospital was so cheerful and decorated in fun colors with animals painted everywhere, and the area where her room was, they called it a "pod". There was a very high tech looking nurse station and negative airflow rooms. Brooklyn was in isolation since her condition was contagious, so she required a negative airflow room. This also explained why everyone had to wear the disposable yellow robes and masks, which they put on and took off each time they came & went. We got settled in our room. It was a very nice room, luxurious by hospital room standards. Brooklyn had her own crib bed, there was a pull out couch for a parent to sleep on, and a rocking chair. We had our own TV, and a full bathroom with a shower and sink. My Dad brought us a ton of food and drinks and a lovely bouquet of flowers. He stayed and visited with us for a while and I was feeling relatively relaxed knowing that Brooklyn was receiving excellent care and was where she needed to be. Abigail was well taken care of. It would be ok.

Once I got comfortable with being in the hospital room I realized it would be incredibly uncomfortable for both Brandon and I to sleep on the pull out couch. I decided he should go home and sleep in our own bed and be there for Abigail. I could handle calling the nurse in to suck snot out of the baby every couple hours. And I had to be there to nurse her anyway. Brandon went home around 9:30pm. Of course starting around 10pm Brooklyn started to get fussy and seemed to be needing more suctioning than before. She was having a harder time nursing. The doctors had ordered lab work to check her blood gasses each hour. They weren't looking very good, and they told me I needed to not nurse her for a while and let her just work on breathing. A couple hours after that her blood gas took a turn for the worse. Her Carbon Dioxide level was around 70, and a normal healthy baby should have one around 35-40. As far as a scale of how bad 70 is...well it's REALLY bad. What this meant was that Brooklyn was able to breath oxygen in, but her body wasn't able to push it all out, so she was retaining too much Carbon Dioxide in her blood.

Day 2:
Around 1:00 am? Not sure exactly what time, the team of doctors (did I mention Children's hospital works with a team of doctors, that all consult on your child's case? and they come in 2 at a time? I loved this approach! It made me comfortable knowing she was receiving consistent care) came in and explained that since her labs were getting so much worse, that she needed more support than they could offer her on the regular hospital floor. Brooklyn needed to be transferred to the NICU (Neonatal Intensive Care Unit). By 2am they had a room ready for her in the NICU and they transported us up there. I was alone, mind you. I'd sent Brandon home, all confident in my mothering/crisis handling abilities. I tried calling/texting Brandon but he was asleep and his phone wasn't waking him up.

Brooklyn with all her NICU gear

Being admitted to the NICU was probably the most traumatic moment of my life. It was so much worse than the initial ER exam. They took Brooklyn out of her nice crib bed and put her on a warmer pallet. I don't know how to describe it other than it's very medical looking. It's meant for doctors to have easy access to the baby. Again, another swarm of doctors and nurses surrounded Brooklyn and started working at a feverish pace on her. It hit me that she was in critical condition. I called my mom and curled up in the corner of the room and began to cry. I couldn't handle everything that was being done to my baby at that moment. I couldn't even hold her hand to comfort her because there were too many doctors and nurses surrounding her. I just had to sit back and let them work. They put a baby CPAP machine on her, gave her a feeding tube down her little throat, they did a chest x-ray, and added all sorts of monitors to her tiny body. It was just, nothing you ever want to see your child being put through. She was screaming and all I could think about was that she had no idea what people were doing to her & she couldn't even see her mommy! I"m supposed to protect her from anything that hurts her and I couldn't. My mom woke Brandon up. I told him I didn't need him to come to the hospital, I could handle it. But the fact was I couldn't. I was losing my mind. I was NOT ok. Not even close to ok. I felt like my heart was the one that needed help to breathe. And I think he realized that because he came to the hospital in the middle of the night to be with me and Brooklyn.

Day 3:

I'm not taking the time to explain all the medical equipment Brooklyn was on, I'm just including pictures. I hope that's ok. If I explained everything this blog would be twice as long. And that's just insanity. CPAP was the main reason Brooklyn needed to be in the NICU. They couldn't give her CPAP support on the normal hospital floor. A CPAP is a machine that blows oxygen in with force through the nose. A lot of people with sleep apnea use these machines at home when they sleep at night. This was exactly the same thing, just infant size and had to be held on with a little baby helmet.

In the NICU, the medical team does what is known as "rounds". They huddle up around a big work station and discuss each patient's case. Parents are invited to participate in rounds. Brandon and I attended rounds that morning around 9am. We met Brooklyn's full medical team, although we'd already met most of them at various times during our stay there, it was nice to see them all together. Brooklyn had a team of doctors, a nutritionist, a respitory therapist, a nurse, a charge nurse, and a social worker. The team discussed Brooklyn's blood gas levels which were slightly better, but not much better. They were in the mid 60's. So the CPAP was helping, but by no means a miracle worker. Brooklyn was getting very fussy which is normal with the CPAP machine. It's not comfortable. At some point that day the doctors decided to go ahead and order morphine for her. They also determined she could have a tiny amount of milk - I think it was 1/2 an ounce every 4 hours through her feeding tube.

Brandon trying to get some rest in the NICU

At this point I had slept a total of 4 hours since we got to the hospital. I was absolutely losing my mind. Brandon and I decided to trade off on sleep. The NICU room was very different than the regular hospital room. It was not meant for comfort. It had a rocking chair, but that was it. The hospital offered us what was known as a "sleep room". It was on the 5th floor of the hospital and was a room with a bed and a lamp where parents of patients could go take a nap. I took a shift and slept 2 hours, then I returned to the NICU and traded off with Brandon. As luck would have it, while he slept, Brooklyn had her worst night. Again, I was alone to deal with it.



Day 4:
The night nurse had angered Brandon right before I came back from my nap that evening. Brandon was stressed out and sleep deprived and just not being his best self. The nurse was obviously irritated with him. I don't know if this is why, or if she just wasn't the best nurse, or what. But the entire evening the nurse didn't suction Brooklyn's nose out at all. With RSV, the body creates an enormous amount of mucus which clogs up the breathing passages, which keeps babies from being able to breathe. So even though she was on the CPAP machine, they still needed to keep her airway from getting clogged. It had been several hours and the nurse hadn't done any suctioning. Brooklyn suddenly started coughing and then couldn't catch her breath, her oxygen level went down to 60. Alarms were going off...the nurse was on her break! A fill in nurse came to the door but had to take the time to put on the yellow robe and gloves and mask, since Brooklyn was in isolation. She instructed me from the hall to sit Brooklyn up and pat her back. She turned purple. Her heart rate went way low and started alarming, she wasn't breathing. I'm sure it only took a second or two, but it seemed like forever. The nurse came in and suctioned Brooklyn quickly while I held oxygen up. Her stats began to rise. She turned pink again.

An hour later the nurse came back from her break and I told her what had happened. I requested that she suction Brooklyn again. This was the point when I realized that even in the Intensive Care Unit, you still have to be an active advocate for your child. I also realized how serious Brooklyn's condition was and how important it was for her to be in the hospital.

Day 5:
Day 5 was Brooklyn's worst day. Her blood gasses were getting worse again. Doctors came in and discussed intubation with me. This meant a machine would breathe for Brooklyn. The thought of this terrified me. I explained how the night nurse hadn't been very attentive and maybe her labs were bad because she had been too congested. The doctors decided they would give her a really good deep suctioning and give her a couple hours and test her again. They let me know I should prepare for her to be intubated at that point. We communicated this with family and requested extra prayers. Prayers worked - Brooklyn's labs came back slightly better and the doctors decided they could hold off on intubating. Brooklyn stayed consistent, and praise the Lord she never had to be intubated!

Day 6:

Gettin' better!

This was the day Brooklyn turned a corner. She finally was getting better. Although progress was very slow, she was at least not getting worse, and doing slightly better. They increased her feeds through her feeding tube, and other than that it was starting to feel like Groundhog's day. On this day I got to see Abigail. I hadn't seen her since she left for daycare Tuesday morning. Mom brought Abby and we took her to lunch by the hospital an played at a park. I will never forget the look on her face when she looked up in her car seat and I was there smiling at her. She literally shook with joy. My poor baby girl!

Day 7:
Brooklyn continued to improve and needed less and less support on the CPAP machine. The doctors were thinking she could be moved back down to the regular hospital floor. She still had signs of respitory distress - labored breathing, and definitely needed support, but not nearly to the level she had been requiring. Unfortunately, the hospital was at max capacity. Turns out it's "RSV Season" and all of the isolation rooms were full. So we continued to wait in the NICU, taking turns sleeping in the family sleep room, taking turns going to the cafeteria and eating in the waiting area, because they do not allow food in the NICU. Brooklyn was taken off of the CPAP machine and put back on the regular nose oxygen support.

Since Brandon had been getting cranky staying at the hospital and stress was at an all time high, we decided to trade off and have mom come to the hospital that night and stay with me and Brooklyn, while Brandon went home to spend time with Abigail. My mother is a saint! I mean really. Mother Theresa doesn't have much on Mother Rhonda. Mom stayed up with Brooklyn all night while I was able to go to the sleep room and sleep a full 6 hours! Mom dealt with a nurse that I didn't care for, and Brandon got to spend some much needed quality time with Abigail. This helped me feel like she wasn't so neglected.

Day 8:
More waiting for a room. I gave Brooklyn a bath, her first bath since she'd been admitted to the hospital. I got to put a onesie on her, which she'd been naked since being admitted as well. It felt good. Something about a bath and a change of clothes makes you feel more human, and it worked even for a baby. Finally, around dinner time that evening we got moved to a regular hospital room. We had been looking forward to this ever since Wednesday morning! But since the hospital was so full, they put us in a shared room with another RSV baby. He was 1 month old and VERY colicky. So even though we'd been so excited to get out of the NICU, it turned out the NICU was a luxury compared to sharing a room with a screaming RSV baby. AS you can imagine, you don't get a lot of sleep with a sick 1 month old, much less with two of them in the same room on different sleep patterns.

Mom brought Abigail to see me again on this day. This time, I met mom at the parking area and she went to stay by Brooklyn's side while I took Abby to lunch. I had a great time with Abigail, but she did not handle saying goodbye to me this time as well as she had a couple days before. She cried and cried that she wanted me to stay with her, or take her with me to the hospital. It broke my heart. It's impossible to feel "ok" when your child is in the hospital, and it just adds another layer of yuck to feel that you're neglecting your other child at the same time.

View from our NICU room

Day 9:
Brooklyn was showing so much improvement that the doctors decided she could probably come off of oxygen support all together. The rule was - a baby had to keep her stats up while being off of oxygen support for 24 hours. They took her off the support and she was keeping stats up and we were so very happy! Hooray! Brandon went to work and Brooklyn went down for a nap, and so did her stats. She had to be put back on oxygen support :( The doctors decided they would try again that evening to take her off.

No more oxygen!!

Day 10:
Luckily when they took her off oxygen she was able to tolerate breathing on her own through the night without support. She didn't even need suctioning!Thursday morning during rounds the doctors decided she could be discharged! OH HAPPY DAY!!!!!!!!!! It was March 8th. Brooklyn turned 1 month old on March 9th. I had a goal that she would not be in the hospital on her 1 month "birthday" and it happened! Barely, but it happened.


Final thoughts:
February 28th - March 8th, 2012 were by far the worst days of my life. I've never felt such angst. I can't describe how horrible the feeling is when your child is that sick. And I also realize how lucky we are. We are so lucky that Brooklyn got the best possible medical care, we're lucky we live so close to a Children's Hospital that specializes in nursing tiny humans back to health. We are so lucky that we spent the matjority of our time in the hospital on the 4th floor (ICU) and not the 3rd floor, which was the Pediatric Oncology Unit, where I saw too many bald, pale children being wheeled around in ironically cheerful wagons. We are lucky that Brooklyn only had a virus, which was not treatable with medication, but was something her body could beat on its own with time and supportive care. We are lucky she did not need surgery. We are lucky to have family nearby that could take excellent care of Abigail while our focus was on Brooklyn.

The entire time we were in the hospital, we had friends and family praying for Brooklyn at all hours of the day and night. There is no doubt in my mind that the prayers are what kept her from being intubated, and kept Abigail from breaking down from too much time away from mom. We survived what, at the time, felt like it was impossible to withstand. We were in the hospital for 10 grueling days when we were originally told it would probably be 2. I learned how strong I can be as a mother, and I learned a lot about myself and how I handle a crisis. I came out of this experience scarred, but also with more wisdom and strength and faith. You have to find the lesson, the good, the meaning behind each difficult or bad situation. And that's what I take away from this.

Brooklyn is now 3 months old and thriving. She is completely healthy, extremely fat :), happy, and playful. She smiles all the time and even has started to giggle. Abigail is slightly scarred from our hospital stay. She will randomly say things like, "No more hospitals!" or "Mommy! You came back from the hospital!" and give me this really pathetic smile that breaks my heart. But she does not harbor any ill feelings toward Brooklyn for taking me away from her. And that in itself is a miracle.

I am blessed and grateful for my healthy family. And I can never repay my mother for all of her love and endless amount of support she provides to my family.