Felix is finally starting to really improve. Last week they put him back on the conventional ventilator, finally. He's way less swollen than he has been and is weighing in at about 4 lbs! He's still getting lasix (the diuretic) and is getting bancamiacin and gentamiacin to treat a bacterial infection. He's on full feeds! That's 27 ml every 3 hours...just short of an ounce! But he's actually receiving his feeds continuously because he's been spitting up, and they don't want it to get caught in his lungs. So he's receiving 9 ml every hour of breastmilk.
Speaking of breastmilk, does anyone want some for their baby? Do you know anyone who needs some for their baby? Do you want to keep a TON of it in your freezer? I know this is all gross, but seriously, I need to get it out of my freezer or into a baby belly. My freezer is just about full (it probably will be by the end of this day), and I cannot dump it down the sink. What is the point of pumping if I will just dump it? I know I know....I need to keep up my milk supply, but if I dump it I will feel like I'm wasting my time. And I already hate taking the time to pump. I want my baby! NOT A MACHINE!
Yesterday Ronald and I went to see Felix after church. He looked so good. I asked the nurse if I could hold him and she said no. That's the second time this week I was told no. I don't understand. My favorite nurse Kathy R. doesn't understand either. I know that she had a "talk" with both of those nurses that told me no. Felix is very stable. His ventilator settings are low. I should be able to hold him. I cried yesterday after the nurse left. I went to the other side of the isolette and opened the little door closest to Felix's sweet face. As soon as I got my head right in the little hole (I wish I could fit my head through so I could kiss him, but the hole is too small), he opened his little eyes and looked right at me. We exchanged glances for about 5 minutes. Usually when he opens his eyes, they roll around, but not yesterday. Yesterday he looked right into my eyes. I felt like I was looking into the heavens. I always feel that a birth of a baby is so sacred. They have just come from the presence of our Father in Heaven. It is just that, sacred. Yesterday was different. It was sacred, but more so than I have ever experienced. I felt in awe looking into this little boy's eyes. I know that he is one special baby. He is my miracle baby. He will teach me a lot about life, I just know it.
I don't know if I've said this before, but he really is a miracle baby. When Felix was conceived, Ronald and I were on the brink of divorce, things were really bad. Then we had a week that we were happier with each other, discussed that we would wait to have children until Ronald was done school in 3 years, and shortly after I found out I was pregnant. No one was happy except for me. I was sick all the time (nothing new) and then it ended. Then I bled ALL THE TIME. Then we found out that he had spina bifida. Enter all the doctors telling me that I could abort the pregnancy. Over and over and over. NO! I won't. Then my water broke at 25 weeks and he was born at 26 weeks and 3 days. He was just past that age of viability. The world was working so hard against this little guy, and still is. But he is fighting, hard. Heavenly Father wants him here for some reason. For some period of time. I am grateful that he is fighting so hard. I am grateful that he has helped to heal my marriage with my husband. I love this miracle baby. All babies are miracles. But my Felix is my special little guy. My last baby. He has made me more beautiful. He has given me a chance to be a mami again. He will make me more beautiful in many ways. He's a miracle. I'm glad he's doing much better.
Monday, March 29, 2010
Wednesday, March 17, 2010
Still critical
Felix is still in critical condition, but he has been doing a little better. I think it's the sunshine. As of today he's on 45% oxygen, which isn't good, but it's way better than 90%. He's off of the dopamine (blood pressure medicine), so they are going to give him some kind of a diuretic (they aren't sure which one yet) so he won't be so swollen. He looks like a fat baby, but he's not. He just has a lot of fluid retention under his skin. Even his little skull is swollen. His lungs still aren't great, but they've been able to decrease the pressure on the oscillator, which is also great.
So, even though he is still critical, he is definitely improving. I'm grateful. Miracles can happen.
I had my doctors appointment (5 weeks already!). I can lift up to 20 lbs now. At first I thought...."woo hoo! I can pick up my kids!", but I can't. Isabella's about 40 lbs., and Alexander is about 30lbs...well, at least I can go grocery shopping by myself and vacuum. In three more weeks I'll be able to hold my bigger babies. Three weeks. I hope it goes by fast. Both of my cervical sutures came out, which was gross, but I'm glad that I'm mostly healed. My stitches in my uterus still haven't dissolved. I'm down to 132lbs, I need to gain some weight. Maybe now that I can actually lift more than a gallon of milk at a time I will gain back some muscles. We shall see.
Today is a beautiful day, in more than one sense. Prayers are answered. Patience in hard.
So, even though he is still critical, he is definitely improving. I'm grateful. Miracles can happen.
I had my doctors appointment (5 weeks already!). I can lift up to 20 lbs now. At first I thought...."woo hoo! I can pick up my kids!", but I can't. Isabella's about 40 lbs., and Alexander is about 30lbs...well, at least I can go grocery shopping by myself and vacuum. In three more weeks I'll be able to hold my bigger babies. Three weeks. I hope it goes by fast. Both of my cervical sutures came out, which was gross, but I'm glad that I'm mostly healed. My stitches in my uterus still haven't dissolved. I'm down to 132lbs, I need to gain some weight. Maybe now that I can actually lift more than a gallon of milk at a time I will gain back some muscles. We shall see.
Today is a beautiful day, in more than one sense. Prayers are answered. Patience in hard.
Saturday, March 13, 2010
Critical
Dear friends and family,
Yesterday after Felix's surgery, this sweet little baby was doing just fine. His oxygen levels were very good. They were able to wean him a little from the vent. He did well until Ronald and I left, then he started doing really really bad. He went from being on 30% oxygen support to 95%, and he still didn't have good oxygen in his blood. That is really really bad. So, they changed the type of ventilator that he's on. Now he's on an osilator. It gives him more support in his lungs, more breaths. But he still is on a LOT of oxygen support...88%! This is not good at all.
The upper lobe in his right lung has collapsed. The lower lobe in his left lung is starting to collapse. His lungs are expanding down instead of out. The respiratory therapist said the lungs usually expand down to the 8th rib. They don't like it to expand past the 10th. His are down to the 12th. Not good. The bottom portion of his lungs are not releasing the air, they are holding it all in. This is also not good. There is a possibility that he good develop lung disease, but they aren't sure of it yet. His blood pressure is really really low. Right now it's 44/32. He's on dopamine to help increase his blood pressure. He's still on a morphine drip, and he's getting another blood transfussion. Hopefully the blood will help him get a little more oxygen through his body. He's really really puffy. He doesn't look good at all. It's scary.
The nurse practitioner told me that he is in critical condition, but right now it's not out of their control, which is good. But still, they are worried. It scares the HECK out of me that the nurse practioner is scared. That is sooooo not good.
I am terrified that I'm not going to be able to bring home my son. I'm afraid that he's going to pass away in the hospital. I attended the funeral of a friends new born baby a couple of months ago. It was a painful thing to witness the tiny casket. It was even more painful to see that poor mommy and how heartbroken she was (and still is). I'm afraid that I'm going to experience that. I don't know if I could. I know that it is such a blessing to have Felix here. To be able to see him, to watch him grow. I also know that Heavenly Father has a plan for each of us. I hope that his plan for Felix included him being able to come home with us and to continue to grow and develop, but I don't know. Only Heavenly Father knows. I hope that this is not Felix's big trial. I know it sounds terrible, but I want him to have other trials besides these. I need to trust in my Father.
Everything will be okay.
Everything will be okay.
Everything will be okay.
Can I really convince myself of that? I'm not so sure.
A very sweet lady told me Friday night that she dreamt that I brought Felix home. What a beautiful dream. I cried. I wish I would have that dream. I hope it comes true.
So, I feel bad for asking, but would you all pray your hardest for my Felix. Pray that he might be able to continue to fight here. Please. And pray for me that I will have comfort. I need it more than ever. I can't describe how difficult this is. To not know if your baby is going to make it or not. I don't know how I'm going to get through this. I really don't. Pray for us.
Please.
Hopefully there will be better news soon. I need good news.
Maybe Michael Jackson is really alive! That would be good news... ha ha.
Love and hugs and many thanks (and tears) from the NICU.
Yesterday after Felix's surgery, this sweet little baby was doing just fine. His oxygen levels were very good. They were able to wean him a little from the vent. He did well until Ronald and I left, then he started doing really really bad. He went from being on 30% oxygen support to 95%, and he still didn't have good oxygen in his blood. That is really really bad. So, they changed the type of ventilator that he's on. Now he's on an osilator. It gives him more support in his lungs, more breaths. But he still is on a LOT of oxygen support...88%! This is not good at all.
The upper lobe in his right lung has collapsed. The lower lobe in his left lung is starting to collapse. His lungs are expanding down instead of out. The respiratory therapist said the lungs usually expand down to the 8th rib. They don't like it to expand past the 10th. His are down to the 12th. Not good. The bottom portion of his lungs are not releasing the air, they are holding it all in. This is also not good. There is a possibility that he good develop lung disease, but they aren't sure of it yet. His blood pressure is really really low. Right now it's 44/32. He's on dopamine to help increase his blood pressure. He's still on a morphine drip, and he's getting another blood transfussion. Hopefully the blood will help him get a little more oxygen through his body. He's really really puffy. He doesn't look good at all. It's scary.
The nurse practitioner told me that he is in critical condition, but right now it's not out of their control, which is good. But still, they are worried. It scares the HECK out of me that the nurse practioner is scared. That is sooooo not good.
I am terrified that I'm not going to be able to bring home my son. I'm afraid that he's going to pass away in the hospital. I attended the funeral of a friends new born baby a couple of months ago. It was a painful thing to witness the tiny casket. It was even more painful to see that poor mommy and how heartbroken she was (and still is). I'm afraid that I'm going to experience that. I don't know if I could. I know that it is such a blessing to have Felix here. To be able to see him, to watch him grow. I also know that Heavenly Father has a plan for each of us. I hope that his plan for Felix included him being able to come home with us and to continue to grow and develop, but I don't know. Only Heavenly Father knows. I hope that this is not Felix's big trial. I know it sounds terrible, but I want him to have other trials besides these. I need to trust in my Father.
Everything will be okay.
Everything will be okay.
Everything will be okay.
Can I really convince myself of that? I'm not so sure.
A very sweet lady told me Friday night that she dreamt that I brought Felix home. What a beautiful dream. I cried. I wish I would have that dream. I hope it comes true.
So, I feel bad for asking, but would you all pray your hardest for my Felix. Pray that he might be able to continue to fight here. Please. And pray for me that I will have comfort. I need it more than ever. I can't describe how difficult this is. To not know if your baby is going to make it or not. I don't know how I'm going to get through this. I really don't. Pray for us.
Please.
Hopefully there will be better news soon. I need good news.
Maybe Michael Jackson is really alive! That would be good news... ha ha.
Love and hugs and many thanks (and tears) from the NICU.
Friday, March 12, 2010
Surgery
Yesterday Felix turned 1 month old. One month of new life for us both. What a blessing. He was supposed to have his surgery to close his PDA yesterday morning. They rescheduled it for today. I'm glad he didn't have it on his birthday. I made him a little "birth-day" present Wednesday night. It's a tiny little blankie. It's huge on him, but it really is very small. As of yesterday, he's 3 lbs 3 oz., but some of it is just water weight. That should go away real soon.
This morning Felix got his PDA ligated. I will be able to go back and see him very soon. They said everything went well. I will believe that when I see him. I hope he's comfortable. I don't want my baby to be in pain. I was TERRIFIED that he was going to experience the same thing that I did during delivery. Total blood loss. He didn't, not at all. I will never be able to view surgery the same again. It will always terrify me. I hope there aren't a whole lot of surgery's coming our way.
Hopefully, now that the PDA is ligated, I will be able to hold my baby soon in kangaroo care (skin to skin). It's been almost 2 weeks since I last held him. Monday he will be 31 weeks gestationally. I can't believe it! He's going to start getting bigger really fast, and hopefully his suck reflex will come in the next couple of weeks. We shall see.
Signing off from the NICU at Johns Hopkins. I will post pictures later.
This morning Felix got his PDA ligated. I will be able to go back and see him very soon. They said everything went well. I will believe that when I see him. I hope he's comfortable. I don't want my baby to be in pain. I was TERRIFIED that he was going to experience the same thing that I did during delivery. Total blood loss. He didn't, not at all. I will never be able to view surgery the same again. It will always terrify me. I hope there aren't a whole lot of surgery's coming our way.
Hopefully, now that the PDA is ligated, I will be able to hold my baby soon in kangaroo care (skin to skin). It's been almost 2 weeks since I last held him. Monday he will be 31 weeks gestationally. I can't believe it! He's going to start getting bigger really fast, and hopefully his suck reflex will come in the next couple of weeks. We shall see.
Signing off from the NICU at Johns Hopkins. I will post pictures later.
Monday, March 8, 2010
An apology
Last week I went to a Stake Young Women's meeting. It was great to get out of the house and to be with the YW's presidency that I love and had missed so much. But at the same time, I wish that I didn't go for two reasons.
1. There was a very pregnant woman who walked into a liquor store near the church. At first I saw her belly and was very sad. I never got anywhere near that big this time. I barely made it to 6 months. And I am not allowed to ever be pregnant again because it's too dangerous. I'm only 26! I'm too young to be told I can't have any more kids! Then when I saw her go into the store, I became ANGRY. What was she doing?! Maybe she was buying a lotto ticket, or something for someone else....I HOPE I HOPE I HOPE. I seriously had my hand on the seat belt and was ready to get out of the car. But the light turned green and we moved. Good thing the light turned. I probably would've embarrassed myself.
2. Before the real "get down to business" part of our meeting started, we all got a little something to eat from the table in the back of the room. As I was filling my plate and talking to Megan B. from my old ward, a new mom and her brand new brought home from the hospital baby walked in the door. I started crying immediately and said "I can't do this." I quickly went up to my seat and sat down hoping that I would just be able to forget that they were back there. Then the baby cried. Then I cried. I was angry at that mom. Didn't she know what I was going through? I didn't get to see my baby that day because my Mom was sick. I missed him dearly. How DARE she bring her baby with her! I felt like she was rubbing it in my face. Look what I have and you don't! Then she was nursing her baby. OH MAN. You don't know how many times I was about to get up and walk out the door. I wanted to go and take her baby from her and RUN like the wind. How would she like it if she didn't have her baby? I seriously couldn't take it. BUT, lucky for me, I was cozy in between two lovely ladies that made it easier for me to stay. Tiffany, you must have known every single time I was about to go because you would either put your arm around me or talk to me, and then I had to stay. So thank you. And Geri, thank you so so much for offering to take me to see Felix the next day. That made things better.
I needed to stay for that meeting. I needed to feel the spirit that was there. I needed to here the guidance from President Clover at the end of the meeting and how we need to be better leaders and what we need to do to help our girls. I'm glad that Tiffany kept interrupting my attempts to leave. Otherwise I would've never heard those things.
When I got home that night, I thought a lot about my feelings. I felt TERRIBLE. I should not have been angry at either of those mom's. The first very pregnany mom, I should've been concerned, but not irrate. And that second beautiful and blessed mother, I don't know who she is, and she doesn't know me. How unfair of me to think that she was trying to hurt me. She had no idea what I was or am going through. I should not have been mad at her. I should not have been jealous. I should be happy for her that she can hold and feed and nurture her little one. I am so very sorry that I had those irrational feelings. I wish that I could go back and hug them both and tell them to take care of their sweet babies. To love them and nurture them and pray for them. I wish I could congradulate them. Repentence is hard sometimes. I never thought I would have a hard time repenting of my feelings, but I am. I am truly sorry. Please, everyone, forgive me. I need to forgive me, too. I am greatful for the atonement. I am greatful for my children. I love my family; my husband especially. I'm glad that Jesus Christ understands my emotions. He can help plead to Heavenly Father in my behalf as I plead for forgiveness. I am sorry. I will become better.
1. There was a very pregnant woman who walked into a liquor store near the church. At first I saw her belly and was very sad. I never got anywhere near that big this time. I barely made it to 6 months. And I am not allowed to ever be pregnant again because it's too dangerous. I'm only 26! I'm too young to be told I can't have any more kids! Then when I saw her go into the store, I became ANGRY. What was she doing?! Maybe she was buying a lotto ticket, or something for someone else....I HOPE I HOPE I HOPE. I seriously had my hand on the seat belt and was ready to get out of the car. But the light turned green and we moved. Good thing the light turned. I probably would've embarrassed myself.
2. Before the real "get down to business" part of our meeting started, we all got a little something to eat from the table in the back of the room. As I was filling my plate and talking to Megan B. from my old ward, a new mom and her brand new brought home from the hospital baby walked in the door. I started crying immediately and said "I can't do this." I quickly went up to my seat and sat down hoping that I would just be able to forget that they were back there. Then the baby cried. Then I cried. I was angry at that mom. Didn't she know what I was going through? I didn't get to see my baby that day because my Mom was sick. I missed him dearly. How DARE she bring her baby with her! I felt like she was rubbing it in my face. Look what I have and you don't! Then she was nursing her baby. OH MAN. You don't know how many times I was about to get up and walk out the door. I wanted to go and take her baby from her and RUN like the wind. How would she like it if she didn't have her baby? I seriously couldn't take it. BUT, lucky for me, I was cozy in between two lovely ladies that made it easier for me to stay. Tiffany, you must have known every single time I was about to go because you would either put your arm around me or talk to me, and then I had to stay. So thank you. And Geri, thank you so so much for offering to take me to see Felix the next day. That made things better.
I needed to stay for that meeting. I needed to feel the spirit that was there. I needed to here the guidance from President Clover at the end of the meeting and how we need to be better leaders and what we need to do to help our girls. I'm glad that Tiffany kept interrupting my attempts to leave. Otherwise I would've never heard those things.
When I got home that night, I thought a lot about my feelings. I felt TERRIBLE. I should not have been angry at either of those mom's. The first very pregnany mom, I should've been concerned, but not irrate. And that second beautiful and blessed mother, I don't know who she is, and she doesn't know me. How unfair of me to think that she was trying to hurt me. She had no idea what I was or am going through. I should not have been mad at her. I should not have been jealous. I should be happy for her that she can hold and feed and nurture her little one. I am so very sorry that I had those irrational feelings. I wish that I could go back and hug them both and tell them to take care of their sweet babies. To love them and nurture them and pray for them. I wish I could congradulate them. Repentence is hard sometimes. I never thought I would have a hard time repenting of my feelings, but I am. I am truly sorry. Please, everyone, forgive me. I need to forgive me, too. I am greatful for the atonement. I am greatful for my children. I love my family; my husband especially. I'm glad that Jesus Christ understands my emotions. He can help plead to Heavenly Father in my behalf as I plead for forgiveness. I am sorry. I will become better.
My sons are not animals
Felix is doing okay. He's almost 3 lbs! And he's 14 1/2 inches long. He is getting so big! It still sad to me every day that he's in the hospital, but at the same time, it's kind of neat to see him grow on the outside how he would be growing on the inside. This little man is still on the ventilator, and his settings are pretty high, which is frustrating for me. I'm sure one day he'll be off of it. His PDA is still open. As of today, the doctors are not sure if they are going to do surgury to close his PDA or not. They are doing a blood culture to make sure that he doesn't have any infections, first, and then they will go from there. He's also receiving 4cc's of my breastmilk every 4 hours! He's moving up in the world!
Despite the pictures of a cute little tail and a new found way to drink, I swear my boys are indeed boys.
Look how big he's getting! He's finally starting to get a little fat in his cheeks and chin. It's not much, but it's starting to form! WOO-HOO!
His little "bunny tail". That's his spina bifida. That will be corrected at a later date. Right now he's way too small for that surgury. BUT the good news is that he's peeing like a champ and moving his legs all around. I love his little tail. It's really soft to the touch and just so stinkin' cute!
All of his hair.
My son Alexander is 17 months old. He LOVES to climb on everything, tear everything apart, destroy stuff, and make a HUGE mess. I think his father was like this as a child, from what I've heard. Here is Alexander dumping water into a bowl on the table.
Very pleased with himself, and pleased that we all thought he was very funny.
Here doggy doggy. haha....silly choo choo. He LOVED licking the water out of the bowl. And he got it all out of there, too.
Despite the pictures of a cute little tail and a new found way to drink, I swear my boys are indeed boys.
Talking with my son. (Thanks for taking pictures Geri!)
Look how big he's getting! He's finally starting to get a little fat in his cheeks and chin. It's not much, but it's starting to form! WOO-HOO!
His little "bunny tail". That's his spina bifida. That will be corrected at a later date. Right now he's way too small for that surgury. BUT the good news is that he's peeing like a champ and moving his legs all around. I love his little tail. It's really soft to the touch and just so stinkin' cute!
All of his hair.
My son Alexander is 17 months old. He LOVES to climb on everything, tear everything apart, destroy stuff, and make a HUGE mess. I think his father was like this as a child, from what I've heard. Here is Alexander dumping water into a bowl on the table.
Very pleased with himself, and pleased that we all thought he was very funny.
Here doggy doggy. haha....silly choo choo. He LOVED licking the water out of the bowl. And he got it all out of there, too.
Happy happy day
Last Tuesday, on our 2 week and 5 day birth/rebirth day, I got to hold Felix for the first time. It was the most wonderful thing EVER. When Mom and I got to the NICU, his nurse asked if I had held Felix yet and I told him I had not. She then (without my knowing it) tracked down the Nurse Practioner and the Respiratory Therapist and asked them if I could hold my sweet baby. They said yes, but only for a short period of time, maybe 10 minutes. When Kathy (his nurse, and my FAVORITE nurse....and not just because she got Felix into my arms) told me that I would be holding Felix, I cried and cried. She cried with me. A lot of people in that room cried with me.
I had been praying for quite some time that I would get to hold my son. I felt like I was never going to be able to hold him. Every day seems like a week when you have a baby in the NICU. I was having a hard time being patient. BUT, Heavenly Father answered my prayer and let me hold my sweet tiny son for 15 minutes! It seemed like 2, but I was so glad to hold him.
When they placed him in my arms, it didn't really feel like he was there. He was so small! I didn't know if I was allowed to kiss him or not (silly, huh?), so I asked and they said kiss away! I have never been afraid of kissing my babies, but I was afraid of kissing him. I had just been sick with a nasty stomach bug a few days prior, and I didn't want him to get sick. I was also afraid that I would suffocate him or something, since he is so small. But once I got those first few kisses out, I let him have it. And guess what, he liked it. Sweet boy. I can't wait to kiss him some more.
LOOK! His belly button fell off! (not really....just his umbillical cord) That made me sad, but it's fun to see his cute little button.
This is when he was being wrapped up so I could hold him. That shirt is one of the newborn standard hosptial shirts. It was as big as him.
All ready for Mami.
My favorite picture. Boy was I crying. Happy that I could hold my baby, but sad that it took so long before I was able to hold him.
An upclose look at my son. I must say, he is quite handsome.
Kisses
Me and Mommy (Nanny) and Felix
I had been praying for quite some time that I would get to hold my son. I felt like I was never going to be able to hold him. Every day seems like a week when you have a baby in the NICU. I was having a hard time being patient. BUT, Heavenly Father answered my prayer and let me hold my sweet tiny son for 15 minutes! It seemed like 2, but I was so glad to hold him.
When they placed him in my arms, it didn't really feel like he was there. He was so small! I didn't know if I was allowed to kiss him or not (silly, huh?), so I asked and they said kiss away! I have never been afraid of kissing my babies, but I was afraid of kissing him. I had just been sick with a nasty stomach bug a few days prior, and I didn't want him to get sick. I was also afraid that I would suffocate him or something, since he is so small. But once I got those first few kisses out, I let him have it. And guess what, he liked it. Sweet boy. I can't wait to kiss him some more.
Mom changed Gabe's diaper because I was too weak to do it. (Mom calls Felix "Gabe". She didn't like the name Felix, even though now she says it's growing on her. But she will always call him "Gabe" because he's her angel baby.)
LOOK! His belly button fell off! (not really....just his umbillical cord) That made me sad, but it's fun to see his cute little button.
This is when he was being wrapped up so I could hold him. That shirt is one of the newborn standard hosptial shirts. It was as big as him.
All ready for Mami.
My favorite picture. Boy was I crying. Happy that I could hold my baby, but sad that it took so long before I was able to hold him.
An upclose look at my son. I must say, he is quite handsome.
Kisses
Me and Mommy (Nanny) and Felix
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