I can't believe my baby girl is 1 month old already.....honestly, when I had her and they told me she'd be in the hospital for over 3 months, it sounded like FOREVER, but I can honestly say that it's gone by pretty quickly. I hope the next couple months will feel the same and that before I know it I'll be able to bring her home!
Today when I got to the hospital for my daily visit, baby Katea had just finished her cares....I was bummed that I got there 15 minutes too late to do them, the dang traffic from the construction made it take even longer for me to get to the hospital than usual. She had a new nurse today, one I'd never seen or worked with before, but she was really nice and sweet and I really like her. Pretty much all the nurses have been exceptionally nice, courteous and professional.....there's a HUGE sense of care, compassion and concern from all the NICU staff and it honestly does make the stay there a little more bearable. Her nurse came in and gave me the updates on baby and everything sounded great. The day before, they changed the breathing tube that was in her throat. The ventilator leak I talked about in my last post was getting worse and worse and they questioned whether it was oxygenating her like she needed. The leak had been consistantly in the 30-40%....but yesterday it was all the way up to a 95-100% leak. They were hesitant to switch the tube because of the stress it causes on their little bodies, but she was yo-yo'ing her oxygen saturation all over the place so they decided to change it to the bigger size that would fit her throat, and hope that would help. She still yo-yo'd a little bit with the new tube, but nothing like before...and she was more calm and comforted, so it looked like it was working. They lowered the amount of hydrocortizone they were giving her, which meant that her blood pressure was stabilizing. They started her on a multivitamin. They up'd her feeding again and now she's getting 20ml every 3 hours. They also started fortifying my breastmilk.....what that means is they add calories to it. Since they took her PICC line out and she's not getting loaded with TPN (electrolytes) or lipids (fat) through her PICC anymore, they have to fortify the milk. They told me that it should start helping her gain weight even faster, which will hopefully help her lungs develop. They also changed the way they were ventilating her, and decided at 5pm they would wein the title volume. Before they tried to wein her by giving her less breaths, in hopes she would pick up the slack and start breathing on her own, that did not work :( ....with this new way they ventilate her, she initiates the breaths and the machine helps her make her breaths full and deep so that her entire lungs open and get oxygen. Lowering the title volume lowers the amount of force given by the machine to make her breaths deep breaths, and the hope is to have her make up the difference. She's consistantly breathing up to 75 breaths on her own every minute, but it doesn't really matter if those breaths aren't big enough to actually oxygenate her little lungs...which was the problem they were finding with the other way they were ventilating her. Weining her title volume was a good thing and told me that the Dr's thought she'd be able to handle it. All the things she told me sounded good and I was so happy to hear she was having a good day!
The nurse walked out of the room and I pulled the chair up to her incubator. I sat there, just me and her....I was just staring and talking to her....she amazes me and I'm so extremely grateful for her. She's been through so much in the month she's been alive and I couldn't help but to sit and stare at her and thank my Heavenly Father for blessing me with her. I got teary eyed just staring at her....and could have sat there for hours, but then 630pm rolled around and the NICU is closed from 630-730 for shift change, so I had to say my goodbyes for an hour.
Wednesday nights the NICU hosts a parent support group class during the break. Most of the time it's different classes on things we, as parent's need to learn and know while being in the NICU....it's great, useful and informative information and it's also a chance to meet other parents, hear their stories, relate and learn their experiences, and make friends. Tonight was a little different, they made it into a Jeopardy night. It was so much fun and very informative...there were more parents at this class then had been at any other class I'd been to, so I got to meet a lot of parent's with different NICU situations. It never fails when it's my turn to talk about my experience that I start crying, that's why I LOVE it when Ova's with me because he's so strong and he can do the talking and spare me from crying....but tonight I had to do it myself. I told them about baby Katea and how much she weighed when she was born and how she's doing and everything and then the lady leading the class asked "do you want to share your whole experience?" I tried, but I couldn't....she asked me if I wanted her to and I said yes.....I put my head down and the tears just ran down my face as she explained that I was having twins, but that I lost one of them. That part of my story never seems to get easier. After the game was over, they let each of us pick a prize from their bin...they had everything you can think of from preemie onesies, rattles, blankets, candy, picture books, binkis....lots of stuff. I got 2 cute little preemie onesies. They look so tiny, but my baby Katea won't be able to fit into them for a long time! She's still so small!
After the parent support group I went back into baby Katea's room. My usual schedule is to pump at 8 so that there can be fresh warm milk for her to eat at her cares at 830. I pumped right next to her incubator....I've been having an issue with the amount of milk I'm getting, so they told me it helps to look at her or be by her when I'm pumping....so I try to do that as much as I can. I noticed that she looked irritated and uncomfortable....she was moving around a lot and she kept squinting her eyebrows like she was in pain. Her oxygen saturation was all over the place and I could just tell something was wrong. I called the nurse in to tell her something was wrong.....she listened to her lungs and she sounded gunky, so she suctioned her. She got a lot of cloudy white stuff from her lungs when she suctioned....which was so bad because her lungs have been so clear and dry for a while now. The nurse said that it could be because they changed the tube, or it could be that she's developing an infection in her lungs....she couldn't tell me for sure. That immediately worried me, especially since we just got over a week of infections and antibiotics...and they already took her PICC line out. They had a blood gas scheduled for 8pm.....since they wein'd her title volume at about 5pm, they just wanted to check the gas to see if she was tolerating the wein. Taking a blood gas consists of them poking her foot and squeezing it over and over to make it bleed into a little tube. The first tube they filled with her blood was send to the RT (respiratory therapist) to test. The results for that came back inconclusive so they had to repeat. She got poked again and when they were filling up the second tube with her blood, they noticed something wrong with the tube, so they discarded that one and had to start again. They poked her for a third time, and finally that one worked. The blood gas test shows how well her body is being oxygenated. Her results were not what we wanted. It showed that her body was not getting rid of the CO2 like it should be, which in esscence meant she was not tolerating the wein at all. Like I said before....2 steps forward, 1 step back. They went back up on her title volume and will try it again in a couple days. They tell me there's nothing else really to do, it's just a matter of her lungs not being developed enough.....and that will come as she grows and gets older. So we just need to wait, be patient keep praying that her little lungs will develop. They explained to me that some preemies lack the vitamins they need, so their bodies start taking them from their bones. They saw that in baby Katea's x-ray....they saw she lacked vitamin D. Thankfully the remedy to fix that is to just start giving her vitamin D in addition to the multivitamin they started her on today. If only all the solutions to the problems that arise were that easy!
On a brighter note, she gained weight again. After her 830pm cares we weighed her and she gained a whole ounce since last night.....I guess the fortifying my milk is helping! She now weighs 1080 grams, which translates into 2lbs. 6 1/2oz.
I love you my sweet baby Katea! Keep fighting, keep growing! Happy 1 month birthday today!
Today when I got to the hospital for my daily visit, baby Katea had just finished her cares....I was bummed that I got there 15 minutes too late to do them, the dang traffic from the construction made it take even longer for me to get to the hospital than usual. She had a new nurse today, one I'd never seen or worked with before, but she was really nice and sweet and I really like her. Pretty much all the nurses have been exceptionally nice, courteous and professional.....there's a HUGE sense of care, compassion and concern from all the NICU staff and it honestly does make the stay there a little more bearable. Her nurse came in and gave me the updates on baby and everything sounded great. The day before, they changed the breathing tube that was in her throat. The ventilator leak I talked about in my last post was getting worse and worse and they questioned whether it was oxygenating her like she needed. The leak had been consistantly in the 30-40%....but yesterday it was all the way up to a 95-100% leak. They were hesitant to switch the tube because of the stress it causes on their little bodies, but she was yo-yo'ing her oxygen saturation all over the place so they decided to change it to the bigger size that would fit her throat, and hope that would help. She still yo-yo'd a little bit with the new tube, but nothing like before...and she was more calm and comforted, so it looked like it was working. They lowered the amount of hydrocortizone they were giving her, which meant that her blood pressure was stabilizing. They started her on a multivitamin. They up'd her feeding again and now she's getting 20ml every 3 hours. They also started fortifying my breastmilk.....what that means is they add calories to it. Since they took her PICC line out and she's not getting loaded with TPN (electrolytes) or lipids (fat) through her PICC anymore, they have to fortify the milk. They told me that it should start helping her gain weight even faster, which will hopefully help her lungs develop. They also changed the way they were ventilating her, and decided at 5pm they would wein the title volume. Before they tried to wein her by giving her less breaths, in hopes she would pick up the slack and start breathing on her own, that did not work :( ....with this new way they ventilate her, she initiates the breaths and the machine helps her make her breaths full and deep so that her entire lungs open and get oxygen. Lowering the title volume lowers the amount of force given by the machine to make her breaths deep breaths, and the hope is to have her make up the difference. She's consistantly breathing up to 75 breaths on her own every minute, but it doesn't really matter if those breaths aren't big enough to actually oxygenate her little lungs...which was the problem they were finding with the other way they were ventilating her. Weining her title volume was a good thing and told me that the Dr's thought she'd be able to handle it. All the things she told me sounded good and I was so happy to hear she was having a good day!
The nurse walked out of the room and I pulled the chair up to her incubator. I sat there, just me and her....I was just staring and talking to her....she amazes me and I'm so extremely grateful for her. She's been through so much in the month she's been alive and I couldn't help but to sit and stare at her and thank my Heavenly Father for blessing me with her. I got teary eyed just staring at her....and could have sat there for hours, but then 630pm rolled around and the NICU is closed from 630-730 for shift change, so I had to say my goodbyes for an hour.
Wednesday nights the NICU hosts a parent support group class during the break. Most of the time it's different classes on things we, as parent's need to learn and know while being in the NICU....it's great, useful and informative information and it's also a chance to meet other parents, hear their stories, relate and learn their experiences, and make friends. Tonight was a little different, they made it into a Jeopardy night. It was so much fun and very informative...there were more parents at this class then had been at any other class I'd been to, so I got to meet a lot of parent's with different NICU situations. It never fails when it's my turn to talk about my experience that I start crying, that's why I LOVE it when Ova's with me because he's so strong and he can do the talking and spare me from crying....but tonight I had to do it myself. I told them about baby Katea and how much she weighed when she was born and how she's doing and everything and then the lady leading the class asked "do you want to share your whole experience?" I tried, but I couldn't....she asked me if I wanted her to and I said yes.....I put my head down and the tears just ran down my face as she explained that I was having twins, but that I lost one of them. That part of my story never seems to get easier. After the game was over, they let each of us pick a prize from their bin...they had everything you can think of from preemie onesies, rattles, blankets, candy, picture books, binkis....lots of stuff. I got 2 cute little preemie onesies. They look so tiny, but my baby Katea won't be able to fit into them for a long time! She's still so small!
Baby Katea's very first preemie clothes....same size as my hand! (I'm gonna have to get some for when she can start to wear clothes.....with my giant kids, I've never owned any clothes this small!)
After the parent support group I went back into baby Katea's room. My usual schedule is to pump at 8 so that there can be fresh warm milk for her to eat at her cares at 830. I pumped right next to her incubator....I've been having an issue with the amount of milk I'm getting, so they told me it helps to look at her or be by her when I'm pumping....so I try to do that as much as I can. I noticed that she looked irritated and uncomfortable....she was moving around a lot and she kept squinting her eyebrows like she was in pain. Her oxygen saturation was all over the place and I could just tell something was wrong. I called the nurse in to tell her something was wrong.....she listened to her lungs and she sounded gunky, so she suctioned her. She got a lot of cloudy white stuff from her lungs when she suctioned....which was so bad because her lungs have been so clear and dry for a while now. The nurse said that it could be because they changed the tube, or it could be that she's developing an infection in her lungs....she couldn't tell me for sure. That immediately worried me, especially since we just got over a week of infections and antibiotics...and they already took her PICC line out. They had a blood gas scheduled for 8pm.....since they wein'd her title volume at about 5pm, they just wanted to check the gas to see if she was tolerating the wein. Taking a blood gas consists of them poking her foot and squeezing it over and over to make it bleed into a little tube. The first tube they filled with her blood was send to the RT (respiratory therapist) to test. The results for that came back inconclusive so they had to repeat. She got poked again and when they were filling up the second tube with her blood, they noticed something wrong with the tube, so they discarded that one and had to start again. They poked her for a third time, and finally that one worked. The blood gas test shows how well her body is being oxygenated. Her results were not what we wanted. It showed that her body was not getting rid of the CO2 like it should be, which in esscence meant she was not tolerating the wein at all. Like I said before....2 steps forward, 1 step back. They went back up on her title volume and will try it again in a couple days. They tell me there's nothing else really to do, it's just a matter of her lungs not being developed enough.....and that will come as she grows and gets older. So we just need to wait, be patient keep praying that her little lungs will develop. They explained to me that some preemies lack the vitamins they need, so their bodies start taking them from their bones. They saw that in baby Katea's x-ray....they saw she lacked vitamin D. Thankfully the remedy to fix that is to just start giving her vitamin D in addition to the multivitamin they started her on today. If only all the solutions to the problems that arise were that easy!
On a brighter note, she gained weight again. After her 830pm cares we weighed her and she gained a whole ounce since last night.....I guess the fortifying my milk is helping! She now weighs 1080 grams, which translates into 2lbs. 6 1/2oz.
I love you my sweet baby Katea! Keep fighting, keep growing! Happy 1 month birthday today!
4 comments:
shes looking so beautiful!!! ur so strong monica I admire ya...
So many milestones that she has overcome, and you as well :) I'm so blessed to know such a mother like you :) Continue to be the most loving mother you are. You're doing an amazing job! Much love :)
She's so beautiful!
She's so beautiful!
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