That's how much time I got to have my baby girl home.....only 12 days! :( I'm sitting here right now next to her white metal crib....she has a big bruise on her left hand from an unsuccessful IV poke, and her right hand is all taped up with a splint because the IV worked in that hand, but they need to keep it straight, so she doesn't bend it and the IV pop out. Her oxygen needs are up to 1/2 liter every minute from the 1/8th she was on at home. She's coughing and wheezing. She's completely exhausted, lathargic and worn out from coughing and working so hard to breathe. But you know what makes it worse? We're not in our comfort zone at the IMC hospital. We're at Primary Children's Medical Center. I'm not knocking this place at all because they give excellent care, but I sure do miss the warm loving kindness and friendship from our old home at the NICU.
Baby Katea started coughing a couple days ago. It wasn't anything major, and to be honest I couldn't tell if it was actual coughing or her reflux...because she coughs with her reflux. Not until last night when she was coughing more often and more severe. She was not congested at all. She was not wheezing. She did not have a fever. She had a dry hacking cough and it looked like it came from way deep inside her. I thought it was asthma. Last night she scared me so I called the on-call pediatrician to see if I should take her to the ER. He told me to count her breaths and if she took more than 60 breaths a minute, then to take her in.....but that if she wasn't, that I should just wait and take her to her pediatrician the next morning. I only counted 45 breaths a minute so I held her all night, watching her....I didn't even sleep. This morning when I woke up I called her pediatrician....he was not in the office today but I was told to go in and another Dr would see her. We got there and they did her assessment. They said her lungs sounded crackly....they immediately called the ambulance to come pick us up from the pediatrician's office to bring us up here to Primarys, just in case it was RSV. We spent 6 hours in the ER, met tons of different doctors and nurses and residents and RT's....and I had to explain the same thing over and over and over again. They suctioned her out and sent what they got to the lab to test to see where the coughing came from.....it was NEGATIVE for RSV! That was the main thing, and the best news we could have gotten in this situation.....BUT she did obviously have something, so they still had to run some other tests to see what it was. They decided to admit her to the hospital just based on the fact that she suffers from chronic lung disease, she's coughing, her lungs sound crackly, and her oxygen needs have increased. At first, they said it would just be to monitor her, but it all depends on the results of the tests, and what it is she actually has.
I feel like a horrible mother. I wonder what I could have done differently to protect her from this. Why does my little baby girl have to suffer so much? I'll gladly take her pain and suffering from her....she's gone through enough. Only 12 days of her whole entire life were spent with her family outside the hospital....and now, here we are again, separated.....back to juggling kids at home and a kid in the hospital. I'm so tired. So sad. So mad. So emotionally drained.
Tea and Ma were sick the week we brought her home. They were coughing pretty bad. I had a really really bad feeling about it and I told Ova several times. I tried secluding ourselves into our bedroom, but it's so dark in there since we fixed the windows so Ova could get some sleep in the day. I asked them to stay in their rooms, but that didn't really work. I was really worried so I asked Ova if either we could go to my parents house, or please go to a hotel or somewhere sterile where the coughing won't affect her. They were coughing pretty bad, and they wouldn't always remember to cover their mouths. They didn't do it intentionally, they never would....it's just that we have to be so much more careful with her than we had to with any of the other kids. We actually left the house for a few days and took her to a hotel for a couple nights, just to get far away from the sickness (and to spend time with just our little family, finally all together) it was a nice get-away, baby and I just staying in the nice sterile quiet hotel room and Ova, Makai, Mone and Lautala would go swim or go bring us food and treats.....and gave time for Tea and Ma to get over whatever it was they had. I told Ova when we went back home that I still didn't want them to watch or even hold her for at least a week......because if she was still in the NICU, you can't visit if you've been sick within the last week. I couldn't keep them separated forever though, I mean, they do live with us in our house. As soon as I heard her cough, I knew she'd caught it from them. :-(
Ova gave her a father's/healing blessing that was so beautiful. I have no idea how long she'll be in here....hopefully not too long. It all depends on what she has and if we caught it early enough to try and stop it before it gets full-blown.
~Next Day~
So they found out what she has, it's the hMPV (Human Metapneumovirus)....it's just another virus that is going around right now, and I had the nurses bring me a handout with more information on it. The handout just confirmed what I already knew:
Causes: The virus is spread by direct or close contact with the respiratory secretions through sneezing or coughing of people infected with the virus, or by contact with objects and surfaces that have the virus coughed or sneezed on them.
I tried to keep her away from harm, I tried to keep her away from the coughing and the germs.....I had a bad feeling about it from the beginning. I'm so sad she got sick. What else could I have, or should I have done? My poor baby girl :(
Today she has progressively gotten worse. She's full of mucus and has to suctioned quite often. They have to give her albuterol treatments with the nebulizer every 4 hours, and they started her on a 5 day steroid. She's still coughing that deep hacking cough, and now everytime she eats she throws up because of all the mucus that's in her throat so she has to be suctioned right before she eats, and we have to pace her more slowly. She's such a good baby though. She's still not crying....even through all the coughing and suctioning....she's really calm. She amazes me still at how much she goes through, and it doesn't affect her attitude....she's still so calm and consolable, only crying when she's hungry or when she wants me to hold her. She's been wanting me to hold her alot....and I love it. Makes me feel a little better that I can be here for her to comfort her now, even though I couldn't protect her from the virus.
I really really really miss IMC. I miss all the nurses there. I miss my friends. Today baby threw up all over....I mean ALL OVER....I pushed the nurse call light and nobody came. I pushed it again and someone called and said they'd be in. 30 minutes later someone finally showed up. Definitely not the kind of care we got at IMC. I'm really overwhelmed with the outpouring of love and support from everyone. My family and friends.....my IMC primary nurses, other IMC NICU nurses, my preemie parent friends. Katea has SO MUCH LOVE from SO MANY PEOPLE....she's one lucky and loved little girl!
The Doctor came in and talked to me today about the virus she has. She said it typically runs a pretty predictable course. Where it gets worse and worse and peaks at about day 5, and then it starts getting better and better. Hopefully she'll get over that peak quickly so we can go back home and start working on her days spent at home being more than her days spent in the hospital! Right now, the score is hospital-136, home-12.
Baby Katea started coughing a couple days ago. It wasn't anything major, and to be honest I couldn't tell if it was actual coughing or her reflux...because she coughs with her reflux. Not until last night when she was coughing more often and more severe. She was not congested at all. She was not wheezing. She did not have a fever. She had a dry hacking cough and it looked like it came from way deep inside her. I thought it was asthma. Last night she scared me so I called the on-call pediatrician to see if I should take her to the ER. He told me to count her breaths and if she took more than 60 breaths a minute, then to take her in.....but that if she wasn't, that I should just wait and take her to her pediatrician the next morning. I only counted 45 breaths a minute so I held her all night, watching her....I didn't even sleep. This morning when I woke up I called her pediatrician....he was not in the office today but I was told to go in and another Dr would see her. We got there and they did her assessment. They said her lungs sounded crackly....they immediately called the ambulance to come pick us up from the pediatrician's office to bring us up here to Primarys, just in case it was RSV. We spent 6 hours in the ER, met tons of different doctors and nurses and residents and RT's....and I had to explain the same thing over and over and over again. They suctioned her out and sent what they got to the lab to test to see where the coughing came from.....it was NEGATIVE for RSV! That was the main thing, and the best news we could have gotten in this situation.....BUT she did obviously have something, so they still had to run some other tests to see what it was. They decided to admit her to the hospital just based on the fact that she suffers from chronic lung disease, she's coughing, her lungs sound crackly, and her oxygen needs have increased. At first, they said it would just be to monitor her, but it all depends on the results of the tests, and what it is she actually has.
I feel like a horrible mother. I wonder what I could have done differently to protect her from this. Why does my little baby girl have to suffer so much? I'll gladly take her pain and suffering from her....she's gone through enough. Only 12 days of her whole entire life were spent with her family outside the hospital....and now, here we are again, separated.....back to juggling kids at home and a kid in the hospital. I'm so tired. So sad. So mad. So emotionally drained.
Tea and Ma were sick the week we brought her home. They were coughing pretty bad. I had a really really bad feeling about it and I told Ova several times. I tried secluding ourselves into our bedroom, but it's so dark in there since we fixed the windows so Ova could get some sleep in the day. I asked them to stay in their rooms, but that didn't really work. I was really worried so I asked Ova if either we could go to my parents house, or please go to a hotel or somewhere sterile where the coughing won't affect her. They were coughing pretty bad, and they wouldn't always remember to cover their mouths. They didn't do it intentionally, they never would....it's just that we have to be so much more careful with her than we had to with any of the other kids. We actually left the house for a few days and took her to a hotel for a couple nights, just to get far away from the sickness (and to spend time with just our little family, finally all together) it was a nice get-away, baby and I just staying in the nice sterile quiet hotel room and Ova, Makai, Mone and Lautala would go swim or go bring us food and treats.....and gave time for Tea and Ma to get over whatever it was they had. I told Ova when we went back home that I still didn't want them to watch or even hold her for at least a week......because if she was still in the NICU, you can't visit if you've been sick within the last week. I couldn't keep them separated forever though, I mean, they do live with us in our house. As soon as I heard her cough, I knew she'd caught it from them. :-(
Ova gave her a father's/healing blessing that was so beautiful. I have no idea how long she'll be in here....hopefully not too long. It all depends on what she has and if we caught it early enough to try and stop it before it gets full-blown.
~Next Day~
So they found out what she has, it's the hMPV (Human Metapneumovirus)....it's just another virus that is going around right now, and I had the nurses bring me a handout with more information on it. The handout just confirmed what I already knew:
Causes: The virus is spread by direct or close contact with the respiratory secretions through sneezing or coughing of people infected with the virus, or by contact with objects and surfaces that have the virus coughed or sneezed on them.
I tried to keep her away from harm, I tried to keep her away from the coughing and the germs.....I had a bad feeling about it from the beginning. I'm so sad she got sick. What else could I have, or should I have done? My poor baby girl :(
Today she has progressively gotten worse. She's full of mucus and has to suctioned quite often. They have to give her albuterol treatments with the nebulizer every 4 hours, and they started her on a 5 day steroid. She's still coughing that deep hacking cough, and now everytime she eats she throws up because of all the mucus that's in her throat so she has to be suctioned right before she eats, and we have to pace her more slowly. She's such a good baby though. She's still not crying....even through all the coughing and suctioning....she's really calm. She amazes me still at how much she goes through, and it doesn't affect her attitude....she's still so calm and consolable, only crying when she's hungry or when she wants me to hold her. She's been wanting me to hold her alot....and I love it. Makes me feel a little better that I can be here for her to comfort her now, even though I couldn't protect her from the virus.
I really really really miss IMC. I miss all the nurses there. I miss my friends. Today baby threw up all over....I mean ALL OVER....I pushed the nurse call light and nobody came. I pushed it again and someone called and said they'd be in. 30 minutes later someone finally showed up. Definitely not the kind of care we got at IMC. I'm really overwhelmed with the outpouring of love and support from everyone. My family and friends.....my IMC primary nurses, other IMC NICU nurses, my preemie parent friends. Katea has SO MUCH LOVE from SO MANY PEOPLE....she's one lucky and loved little girl!
The Doctor came in and talked to me today about the virus she has. She said it typically runs a pretty predictable course. Where it gets worse and worse and peaks at about day 5, and then it starts getting better and better. Hopefully she'll get over that peak quickly so we can go back home and start working on her days spent at home being more than her days spent in the hospital! Right now, the score is hospital-136, home-12.
Gettin' love from daddy....and a little pep talk to stay strong!
7 comments:
Being a mom (let alone a NICU mom) is such a hard job. You are an awesome mom and I know you did everything you could have to protect her from getting sick! I'll be praying for her and your family and hoping that she gets to come home sooner than later.
Stay strong dear Monica!!! Katea is so blessed to have you and Ova as her parents. You guys really have done everything you could do. She's a strong little angel! :') Hope she gets better real soon! hang in there! Love you guys!!!
xoxoxo
Awww Monica I am so sorry, but really there is nothing u could have done. It's hard to ask someone let alone an older someone to stay away or go to their room so they won't get baby sick :( hope they see now how severe n critical it is to not be around the baby, she is recovering, and needs to be watched carefully. That's so sad n hard to swallow. I know she's a fighter & will get better. Much love to u & Ova u guys are amazing parents. Katea is so blessed to have u both :) xoxoxo call ort text me if u need anything!!
Hang in there! So sorry to hear that Katea is sick. We will keep you in our prayers. It is a hard call especially when you have a new little one who comes home to a house full of sick people. There was nothing I don't think you could have done differently. It just happens. Keep fighting! We have been there and done that. I should send you some samples of some essential oils I have.I use them on my little one and we have been around a lot of sick people and I am happy to report that we haven't had one child sick. If you are interested let me know and I will send them to you. They are awesome. They are the doTERRA essential oils. Love ya! Be strong!!!!!!
I'm so sorry to hear she is back in the hospital. :( My youngest got RSV @ 3 weeks from her siblings. We tried to keep the older kids away when the had coughs, but the reality is, when you are in the same house, germs are shared. It's even harder with a premie with lung problems going in. You did what you could do. Thank heaven for the power of prayer and for the priesthood!
sweet Monica, Ova and family. This blog post brought tears. Especially the picture of Ova and baby Katea. Love you and your beautiful family. You are in our prayers and fasting. You are amazing Monica.
I'm so sorry Monica! How scary it is to have her get sick so soon. But I agree with everyone else- you CANNOT beat yourself up over this. There isn't a thing you could have done. Your family is your family and you had been seperated for long enough.
I can totally relate to your feelings about PCMC. They are great clinicians but not what you're used to. We were transferred up there 4 different times during our NICU stay and each time was just as bad. I missed IMC and the care we received there.
Hang in there dear. Lots of prayers coming your way!
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