I thought about this today and have been thinking about this for the last couple of weeks. Sasa is still in the NICU. Since we are FL residents with FL Medicaid and I gave birth in NY, we are having problems with getting an O2 monitor for us to go home. I have no idea how long it's going to take to get the monitor, but it better be before I have to buy another tube of toothpaste! I guess I'm trying to give myself a goal to get to: "We will be home before the toothpaste is finished". Do I think it will happen? Well, considering this is the third time I've said this, no. I'm struggling to get though it here. I'm in such a unique situation that I don't think anyone can relate. Yes, there are many preemie parents out there, but any who aren't even in a state bordering their home state? I don't think so. There were so many "I want to be home before..." dates including, ...by the end of September, ...before their due date, ...sometime mid-October, ...before Halloween, and our new one ...before Thanksgiving. If I'm not home before Thanksgiving, I don't know what I'm going to do.
UPDATE 11/23/2010
We made it home on 11/9/2010. I didn't have to buy toothpaste and we will be celebrating Thanksgiving with our family in FL. God is so good!
Showing posts with label NICU Experience. Show all posts
Showing posts with label NICU Experience. Show all posts
Sunday, October 31, 2010
Friday, October 29, 2010
Reflecting On My Journey
I wrote a post a couple of days ago about Sasa and her journey in the NICU. Since then I can't stop thinking about how far both of my girls have come. I never thought in a million years I'd be pregnant with twins and they would be born three months early while on vacation in NY. What are the chances of that happening?!?! I pray that I never forget my experiences this summer. As terrible and traumatic as they have been, I have been shown God's awesome power and unconditional (agape) love for His creation. Some may say "Look at what God has done to you and your girls. How can He let that happen?" God has made a true believer out of me and I pray that others can find it in their hearts to find answers for themselves. My girls are alive, healthy and growing stronger everyday. I've said it before, nobody can look at my girls and say that there is no God.
In this blog I try to be as real and true as possible. I want my readers to really grasp the emotion and drama of the events that have taken place this summer, but sometimes there aren't words to explain it. When I saw my fragile little girls, the pain and guilt that overcame me was unbearable. I was numb and felt horrible. I was on the verge of tears every single time I saw them. I would often burst into flat out crying sessions before I saw them, after I saw them, at home thinking of them, but never in front of the girls or any nurses. I could cry now just thinking about it. I don't wish these horrors on anyone.
What pulled me though it all was God. I looked to him every time and every time He picked me up. Again and again without fail my Savior stepped in and gave me hope and comforted me. And look now, Mimi is home and thriving and Sasa will be home soon, just waiting on her O2 monitor. You never know what you can handle until you've been brought through it. When you reflect on it you realize you've become a new person, a very different person. I thought I couldn't go through anything worse than losing my mother at age ten and growing up without her. What have I learned while walking through this wilderness? I know that the Lord is on my side and I will trust His path for my life. Thank you Jesus for the health you have restored in myself and my children! Amen!
In this blog I try to be as real and true as possible. I want my readers to really grasp the emotion and drama of the events that have taken place this summer, but sometimes there aren't words to explain it. When I saw my fragile little girls, the pain and guilt that overcame me was unbearable. I was numb and felt horrible. I was on the verge of tears every single time I saw them. I would often burst into flat out crying sessions before I saw them, after I saw them, at home thinking of them, but never in front of the girls or any nurses. I could cry now just thinking about it. I don't wish these horrors on anyone.
What pulled me though it all was God. I looked to him every time and every time He picked me up. Again and again without fail my Savior stepped in and gave me hope and comforted me. And look now, Mimi is home and thriving and Sasa will be home soon, just waiting on her O2 monitor. You never know what you can handle until you've been brought through it. When you reflect on it you realize you've become a new person, a very different person. I thought I couldn't go through anything worse than losing my mother at age ten and growing up without her. What have I learned while walking through this wilderness? I know that the Lord is on my side and I will trust His path for my life. Thank you Jesus for the health you have restored in myself and my children! Amen!
Tuesday, October 26, 2010
Sasa Is Coming Home...On Oxygen
I just got the word today that my baby girl who has fought to breathe her entire life is coming home on oxygen. You would think the doctor would call you to tell you about it, but I had to find out from the nurse during my usual check-up call. I'm happy, but my heart breaks for her. She's been through enough already, now she has to travel back to FL on a monitor. So frustrating.
Let me backtrack a bit and tell you about Sasa's journey up to now. When I was pregnant with her she always had her head in my pelvic bone and was suppose to come out first. During the c-section it was easier to take Mimi out first. She was immediately intubated because she couldn't breathe. Sasa started off on an oscillator, which scared me because her chest was moving so fast I though she was going to explode. At that time I really thought she wasn't going to make it. She was also under a tent that moisturized her skin because, according to the nurse, she would've evaporated. She was so fragileand small. She stayed on the oscilator for a few days, then put her on a high-flow nasal canula called a vapo-therm, but didn't last long and had to be intubated again.
Sasa was on the ventilator for a while, which actually caused a lot of the problems that she's going through now. The ventilator does damage to the lungs after being used for an extended amount of time. Sasa also had a heart murmur that was complicating her breathing and lung development. Medications to close it didn't work, so surgery was the only option. On August 6th she had her surgery. It was the worse 20 mins. of my life. Anything could have gone wrong. The surgery was a success, but she was a respiratory mess for 2 days after. I was a hot mess. She finally pulled through. It took a couple of tries (the first try she actually extubated herself lol), but she finally went back onto the vapo-therm. She graduated to a regular nasal canula and I thought we were home free until she took a whole bunch of steps backwards. Sasa was taking a 42-day cycle of oral steroids which ended on September 11th. She regressed so badly that she ended up on a C-PAP, it looks like a football helmet and she was so uncomfortable in it. It was terrible, yet again I thought I was going to lose her. Do you have any idea what it feels like to think you may lose a child? That you might have to except this tragedy as part of your life? It was an emotional roller coaster. She eventually worked her way back down to a high-flow nasal canula, then a regular canula. The nurses tried to ween her off of the oxygen, but it became clear that she wouldn't be able to come off for quite some time.
My first thought, how in the world are we going to get home with one baby on an oxygen monitor? It's just one thing after another! I'm so happy that Sasa wasn't taken away from me. The anxiety and nail-biting is over, but now comes a new obstacle. Soon, we will be home soon.
Sasa was on the ventilator for a while, which actually caused a lot of the problems that she's going through now. The ventilator does damage to the lungs after being used for an extended amount of time. Sasa also had a heart murmur that was complicating her breathing and lung development. Medications to close it didn't work, so surgery was the only option. On August 6th she had her surgery. It was the worse 20 mins. of my life. Anything could have gone wrong. The surgery was a success, but she was a respiratory mess for 2 days after. I was a hot mess. She finally pulled through. It took a couple of tries (the first try she actually extubated herself lol), but she finally went back onto the vapo-therm. She graduated to a regular nasal canula and I thought we were home free until she took a whole bunch of steps backwards. Sasa was taking a 42-day cycle of oral steroids which ended on September 11th. She regressed so badly that she ended up on a C-PAP, it looks like a football helmet and she was so uncomfortable in it. It was terrible, yet again I thought I was going to lose her. Do you have any idea what it feels like to think you may lose a child? That you might have to except this tragedy as part of your life? It was an emotional roller coaster. She eventually worked her way back down to a high-flow nasal canula, then a regular canula. The nurses tried to ween her off of the oxygen, but it became clear that she wouldn't be able to come off for quite some time.
My first thought, how in the world are we going to get home with one baby on an oxygen monitor? It's just one thing after another! I'm so happy that Sasa wasn't taken away from me. The anxiety and nail-biting is over, but now comes a new obstacle. Soon, we will be home soon.
Wordless Wednesday
Monday, October 18, 2010
"You're So Strong"... NOT!
I can't count the times I was told how strong I am, how brave I am. I just don't feel that way. Things have calmed down a bit, but 3 months ago I was a wreck. My daughters were born at 28 weeks and fighting for their lives. I was an emotional wreck and felt I failed as a mother, that I put my children in danger. I was not exuding strength and bravery as others thought. I was clinging to whatever sanity I had left.
I know that there are people who thank God for getting them through a rough patch and never look back until the next one comes along. When I say that, if it weren't for the life saving breath of God, I would have gone off the deep end I mean it. There were plenty of times when I was standing at the edge of a cliff ready to jump, but the Spirit given to me by God to guide me held me firm to ground and eventually back to green pastures. The are no words to explain that place I was in. It was a black hole of pain, anxiety and loneliness. It was the lowest I've ever been. Through continuous prayer God showed me that He was in control and He was by my side. No matter how many times I was at the edge He pulled me back every time faithfully. Two Verses I cling to are "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything" (James 1:2-4) and "God is able to do immeasurably more than all we could ask for or imagine" (Ephesians 3:20). Praise God for all he has done these last three months. I cannot look at my daughters and say that God doesn't perform miracles anymore.
I know that there are people who thank God for getting them through a rough patch and never look back until the next one comes along. When I say that, if it weren't for the life saving breath of God, I would have gone off the deep end I mean it. There were plenty of times when I was standing at the edge of a cliff ready to jump, but the Spirit given to me by God to guide me held me firm to ground and eventually back to green pastures. The are no words to explain that place I was in. It was a black hole of pain, anxiety and loneliness. It was the lowest I've ever been. Through continuous prayer God showed me that He was in control and He was by my side. No matter how many times I was at the edge He pulled me back every time faithfully. Two Verses I cling to are "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything" (James 1:2-4) and "God is able to do immeasurably more than all we could ask for or imagine" (Ephesians 3:20). Praise God for all he has done these last three months. I cannot look at my daughters and say that God doesn't perform miracles anymore.
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