When Addison was in the NICU at UMMC we had the honor of meeting Braelen. In fact they were roommates for a brief period of time. His mom is simply amazing. She has been faced with so much but has never given up hope. Braelen's story is nothing short of amazing and I am afraid even I wouldn't be able to depict the details and amazing miracles this amazing boy has endured.
But I want to share Braelen's story with you. Visit the link below to learn about Brae and his progess:
https://www.facebook.com/PrayForBrae/info
One IVF, Two Embryos, Two Heartbeats, Two Micro Preemies turned Toddlers...Faith, Courage and everything in between.
Showing posts with label NICU. Show all posts
Showing posts with label NICU. Show all posts
Saturday, January 12, 2013
Monday, November 5, 2012
Leaving the NICU...
Doesn't mean that all the preemie"ness" is gone. Preemie doesn't end at the NICU door, its much deeper then that. Many babies come home on monitors, oxygen, feeding tubes, trachs, medicines and still have plenty of complications; be it reflux, oral aversions, global delays, things much more serious like Hydrocephalus, hearing loss, vision problems including blindness.
Plus let's be realistic...for days, weeks, months a team of highly trained medical professionals have cared for your fragile, precious little one. Now they are trusting you to bring them home and have them thrive! It's terrifying, rewarding and exciting all at once. And lets not forget that sometimes (mom's of multiples) have the challenge of bringing one baby home while one stays behind.
For us we brought Blake home with oxygen (for feeding only) and a monitor (for continuous wear until further notice). While juggling Addison still in the hospital. Then she came home with a G-Tube. It worked out that Blake was coming off of the oxygen and monitor by the time Addison was coming home. I often joked that God knew I could only handle one situation at a time. But in place of Blake's equipment I know had a million and one things for Addison.
Addison is still G-Tube fed now at 20 1/2 months. And she still has some fine motor, and gross motor delays. Blake seems to have overcome most of the obstacles in his way and at 18 months we were blessed to find out that he no longer had any delays and would not longer be needing services and therapies. Some kids face more challenges once they start school or later, will that be Blake or Addison? Only time will tell.
I only know where we stand right now.
Some preemies need a lot more then my two have/or do.
And lets not forget that on top of everything else, a preemie's medical needs are different. Weaker immune systems, higher risk for more infections and hospitalizations. A normal cold, cough or RSV infection can cripple or kill a preemie.
By raising awareness maybe one day we can prevent another preemie being born too soon, and all babies will be born full term.
Plus let's be realistic...for days, weeks, months a team of highly trained medical professionals have cared for your fragile, precious little one. Now they are trusting you to bring them home and have them thrive! It's terrifying, rewarding and exciting all at once. And lets not forget that sometimes (mom's of multiples) have the challenge of bringing one baby home while one stays behind.
For us we brought Blake home with oxygen (for feeding only) and a monitor (for continuous wear until further notice). While juggling Addison still in the hospital. Then she came home with a G-Tube. It worked out that Blake was coming off of the oxygen and monitor by the time Addison was coming home. I often joked that God knew I could only handle one situation at a time. But in place of Blake's equipment I know had a million and one things for Addison.
Addison is still G-Tube fed now at 20 1/2 months. And she still has some fine motor, and gross motor delays. Blake seems to have overcome most of the obstacles in his way and at 18 months we were blessed to find out that he no longer had any delays and would not longer be needing services and therapies. Some kids face more challenges once they start school or later, will that be Blake or Addison? Only time will tell.
I only know where we stand right now.
Some preemies need a lot more then my two have/or do.
And lets not forget that on top of everything else, a preemie's medical needs are different. Weaker immune systems, higher risk for more infections and hospitalizations. A normal cold, cough or RSV infection can cripple or kill a preemie.
By raising awareness maybe one day we can prevent another preemie being born too soon, and all babies will be born full term.
Tuesday, September 18, 2012
Advocating for Your Children...
I cannot stress enough the importance of being your child's advocate.
It takes strength and courage to stand up and do what's right not only for yourself but for your child. They look to you as their parent to make choices for them when they can't. I can promise you that this will not be easy. I can't promise that your choices won't be questioned, challenged or judged; because sadly someone somewhere will do this.
Several times during both my pregnancy and the twins NICU stay, I had to make tough choices. Choices I wouldn't have been able to make on my own without the support of my husband because they effected us both. I will forever be thankful that he and I are on the same page on many things.
From that ultrasound on that cold January day where doctors confirmed our fear. My water had broken and both babies were in jepordy. This was the ultrasound that also revealed that Addison "elegedly" had an ASD (whole in her heart) and Micrognathia (recesed chin to put it simply). The same ultrasound that brought one of the High Risk Specialists to the conclusion that we should terminate Addison, deliver her and attempt to put in a cerclage to save Blake. First Jake declined before I could even speak and stood firm that we would fight as long as Addison's heart kept beating and in no way would we chose to terminate her. That doctor had no problem telling us how much she disagreed and though it was foolish to put myself and Blake at risk. Second, I thought my OB was going to go off the deep end on the specialist and told us there was no way he would do what she was suggesting because that in itself was risking to me and Blake, and was even greater risk to loose Blake. He did warn us though that we could still loose Addiosn "naturually" and may have a stillborn baby. Our hearts broke. All we could do at this point was start antibiotics and then I would be sent home because we hadn't even reached viablity.
Fast forward to 24 weeks, I was admitted to the hospital one more time for steriod shots for their lungs in hopes that IF they should come early they would be better off from a respitory standpoint. I had several doctors, friends and family telling me that now I needed to stay until I delivered. But I couldn't there was just no way, I couldn't handle it. I had 5 weeks to wrap my head around it and prepare myself but I knew in my heart that the stress of being "alone" in the hospital would cause me to go into labor. Jake understood my fears and we listened to each doctor give their reasons. While none of them could give me "the ok" to go home, one of them was brutally honest and told me that I was also right in thinking I was more at risk for infection by staying in the hospital and that going home could give us the best chance at survival. But legally he had to tell me to stay. We dissappointed a lot of people when we made the call to come home. Do I regret it... not really. Would I do it the same way all over again? I can't honestly say. But I do believe that staying home is what helped me get to 26 weeks. Had they kept me at 20 weeks, I do believe I wouldn't have made it that far.
In the NICU, most choices were not up to us. It was all about survival. Our first choice was "How far to go." Our answer was simple, do all you medically can and leave the rest to God. After that things were out of our hands again until it was time to think of alternate options for Addison who struggled to come off the vent. Our first MAJOR choice was did we want to give our daughter steriods to help get her over the hump. This came with the possiblity of increasing her risk for CP and developmental delays, the alternative was a Trach, increased lung damage and death. We opted for steriods.
After that, we were faced with the G-tube and Nissin surgery. Yes, No, Maybe, Give it more time? I armed myself with knowledge of it all and asked a million questions. Peds Surgery wanted to do one more test "just to be sure" because ofcourse the fact that formula oozing out her nose and mouth constantly wasn't enough, that was one test we refused. Why? Because it posed a huge risk for aspiration which could damage her already fragile lungs or worse. Surgery went well but recovery didn't.
Again Addison was struggling to be extubated. Her NEO at the time did not want to hear what I had to say about it and told me that her "45 years of medical expeirence as a doctor would not let me make decisions like that." I pushed back and so did she. This NEO was hell bent on Trach-ing her no matter how we, her parents, felt about the matter. (Keep in mind this NEO had only known Addison for 2 weeks and was not one of her "regular" NEO's. IMO, those 2 weeks didn't over rule the 4 months I had been her mother and watched all she went through.) I made phone calls, had the other NEO's consult, and made myself clear that this was not a button she wanted to push or a decison she wanted to make without our permission. If it meant I had to pay out of pocket for a transfer to another hospital I would do it. In the midst of this Addison had a MRSA flare up and this infection was raging through her body. I knew in my gut that if they cut another hole, in her airway at that, we'd loose her. And we felt like she had been through enough and if this was really the end she would give up. We were making peace with that, but we wouldn't torture her anymore, she suffered enough and had been in enough pain. Also worth noting that Addison was in a room with a handful of other babies, that all had Trachs...something didn't sit right about this. (Disclaimer..... this is just our situation and our story, I am not saying other's should make the same choice. This was the best choice for us.) At the same time they also wanted to surgically place an ART line (similar to a PICC line) to finish out a few short doses of antibotics, because she kept loosing veins. Nope, not happening, find another alternative it was too risky for us at this point.
Fortunatly the other NEO's were able to give a better history for Addison and educate this NEO. A few days later she informed me that she "just didn't know all that had to be done to extubate her before". I couldn't be kind at that point and I told her point blank, "There is a reason Addison was transferred with a chart and you at the very least could have read the cliff notes. Not to mention I told you this, not once but twice. I am sorry but I don't take well to being told what to do or that you will just do it anyway. That doesn't work for me and I honestly hope the next time you have an expeirence with a sitaution like this, you handle it a little better and professionally." Yes I was THAT MOM. And guess what, a week later Addison was off all oxygen, she went from the ventilator to a low flow cannula in less then an hour and she was being discharged a week and a half after that. The NEO was baffled. NEVER UNDER ESTIMATE THE POWER OF A PREEMIE. Just sayin'.
The day of discharge she wouldn't even enter the room to have me sign the paperwork. She had one of the residents to it and she must have thought she escaped me, but we met in the hallway on the way out. And had the nerve to tell me "Well mom WE made it." I kept quiet and kept walking with my baby in her stroller, on our way to freedom. I later found out this doctor was notorious for making parents cry and walking all over them. It's sad it really is. And I can't imagine where we'd be today if we had given in and just let her do what she wanted. I know that things could have ended totally differently even with the choices we made, but the fact of the matter is that things are the way they are for a reason.
I don't regret advocating for either of my children and we have always done what we thought was best for our children and our family.
It takes strength and courage to stand up and do what's right not only for yourself but for your child. They look to you as their parent to make choices for them when they can't. I can promise you that this will not be easy. I can't promise that your choices won't be questioned, challenged or judged; because sadly someone somewhere will do this.
Several times during both my pregnancy and the twins NICU stay, I had to make tough choices. Choices I wouldn't have been able to make on my own without the support of my husband because they effected us both. I will forever be thankful that he and I are on the same page on many things.
From that ultrasound on that cold January day where doctors confirmed our fear. My water had broken and both babies were in jepordy. This was the ultrasound that also revealed that Addison "elegedly" had an ASD (whole in her heart) and Micrognathia (recesed chin to put it simply). The same ultrasound that brought one of the High Risk Specialists to the conclusion that we should terminate Addison, deliver her and attempt to put in a cerclage to save Blake. First Jake declined before I could even speak and stood firm that we would fight as long as Addison's heart kept beating and in no way would we chose to terminate her. That doctor had no problem telling us how much she disagreed and though it was foolish to put myself and Blake at risk. Second, I thought my OB was going to go off the deep end on the specialist and told us there was no way he would do what she was suggesting because that in itself was risking to me and Blake, and was even greater risk to loose Blake. He did warn us though that we could still loose Addiosn "naturually" and may have a stillborn baby. Our hearts broke. All we could do at this point was start antibiotics and then I would be sent home because we hadn't even reached viablity.
Fast forward to 24 weeks, I was admitted to the hospital one more time for steriod shots for their lungs in hopes that IF they should come early they would be better off from a respitory standpoint. I had several doctors, friends and family telling me that now I needed to stay until I delivered. But I couldn't there was just no way, I couldn't handle it. I had 5 weeks to wrap my head around it and prepare myself but I knew in my heart that the stress of being "alone" in the hospital would cause me to go into labor. Jake understood my fears and we listened to each doctor give their reasons. While none of them could give me "the ok" to go home, one of them was brutally honest and told me that I was also right in thinking I was more at risk for infection by staying in the hospital and that going home could give us the best chance at survival. But legally he had to tell me to stay. We dissappointed a lot of people when we made the call to come home. Do I regret it... not really. Would I do it the same way all over again? I can't honestly say. But I do believe that staying home is what helped me get to 26 weeks. Had they kept me at 20 weeks, I do believe I wouldn't have made it that far.
In the NICU, most choices were not up to us. It was all about survival. Our first choice was "How far to go." Our answer was simple, do all you medically can and leave the rest to God. After that things were out of our hands again until it was time to think of alternate options for Addison who struggled to come off the vent. Our first MAJOR choice was did we want to give our daughter steriods to help get her over the hump. This came with the possiblity of increasing her risk for CP and developmental delays, the alternative was a Trach, increased lung damage and death. We opted for steriods.
After that, we were faced with the G-tube and Nissin surgery. Yes, No, Maybe, Give it more time? I armed myself with knowledge of it all and asked a million questions. Peds Surgery wanted to do one more test "just to be sure" because ofcourse the fact that formula oozing out her nose and mouth constantly wasn't enough, that was one test we refused. Why? Because it posed a huge risk for aspiration which could damage her already fragile lungs or worse. Surgery went well but recovery didn't.
Again Addison was struggling to be extubated. Her NEO at the time did not want to hear what I had to say about it and told me that her "45 years of medical expeirence as a doctor would not let me make decisions like that." I pushed back and so did she. This NEO was hell bent on Trach-ing her no matter how we, her parents, felt about the matter. (Keep in mind this NEO had only known Addison for 2 weeks and was not one of her "regular" NEO's. IMO, those 2 weeks didn't over rule the 4 months I had been her mother and watched all she went through.) I made phone calls, had the other NEO's consult, and made myself clear that this was not a button she wanted to push or a decison she wanted to make without our permission. If it meant I had to pay out of pocket for a transfer to another hospital I would do it. In the midst of this Addison had a MRSA flare up and this infection was raging through her body. I knew in my gut that if they cut another hole, in her airway at that, we'd loose her. And we felt like she had been through enough and if this was really the end she would give up. We were making peace with that, but we wouldn't torture her anymore, she suffered enough and had been in enough pain. Also worth noting that Addison was in a room with a handful of other babies, that all had Trachs...something didn't sit right about this. (Disclaimer..... this is just our situation and our story, I am not saying other's should make the same choice. This was the best choice for us.) At the same time they also wanted to surgically place an ART line (similar to a PICC line) to finish out a few short doses of antibotics, because she kept loosing veins. Nope, not happening, find another alternative it was too risky for us at this point.
Fortunatly the other NEO's were able to give a better history for Addison and educate this NEO. A few days later she informed me that she "just didn't know all that had to be done to extubate her before". I couldn't be kind at that point and I told her point blank, "There is a reason Addison was transferred with a chart and you at the very least could have read the cliff notes. Not to mention I told you this, not once but twice. I am sorry but I don't take well to being told what to do or that you will just do it anyway. That doesn't work for me and I honestly hope the next time you have an expeirence with a sitaution like this, you handle it a little better and professionally." Yes I was THAT MOM. And guess what, a week later Addison was off all oxygen, she went from the ventilator to a low flow cannula in less then an hour and she was being discharged a week and a half after that. The NEO was baffled. NEVER UNDER ESTIMATE THE POWER OF A PREEMIE. Just sayin'.
The day of discharge she wouldn't even enter the room to have me sign the paperwork. She had one of the residents to it and she must have thought she escaped me, but we met in the hallway on the way out. And had the nerve to tell me "Well mom WE made it." I kept quiet and kept walking with my baby in her stroller, on our way to freedom. I later found out this doctor was notorious for making parents cry and walking all over them. It's sad it really is. And I can't imagine where we'd be today if we had given in and just let her do what she wanted. I know that things could have ended totally differently even with the choices we made, but the fact of the matter is that things are the way they are for a reason.
I don't regret advocating for either of my children and we have always done what we thought was best for our children and our family.
Thursday, September 6, 2012
NICU Nurses
I recently read an article written by a NICU nurse about "Caring for NICU parents". (Read the article, and it's comments, here). In short the nurse talks about how all to often it's easy to loose focus of the parents and how they are "patients" too in some sort.
I think she did a fabulous job of reminding her collegues how important a parent's role in the NICU can be, and how important it is not to loose sight of the fact that "we" as parents need support and care to. Be it taking the time to help a mom hold her baby for the first (or 31st) time or reassuring them, when they call at 2am, that their little one is just fine. I have seen a small handful of nurses (and even doctors) who often loose sight and focus soley on caring for the preemie (which yes is their maing job, but the letting the parents play a role is HUGE).
First I want to say that I am so lucky that I personally didn't encounter mainy of these situations during our 153 day (total) NICU stay. Most of our nurses were absolutely fabulous and treated me with such respect and compassion. They often offered to include me in the care of Addison and Blake, be it taking a temperature, changing a diaper, or giving a bath. The nurses who had Blake and Addison most often became like family to us. I never felt like I was bothering them if I called 1 time or 25 times during their shift. And I always knew that the twins were in great hands if I couldn't be there. Those nurses made me that comfortable and made a very trying & stressful time in my life that much easier to get through.
Yes we did have 2 nurses who were my least favorite and always seemed too busy to be bothered. And both of them were removed from their care team. I sat in the NICU and watched a nurse tell Addison "Oh behave and stop being foolish" and ignoring her "High Stat" alarm instead of turning down her O2 for over 15 minutes while she checked her email and sent a text message. This was the same nurse who gave me flack for trying to soothe Blake and not immediately picking him up and cuddling him when he was screaming his head off and I was trying to make a bottle, and as soon as it was made I stuck it in his mouth long enough for him to settle so I could pick him up. (This was once Blake was discharged and we were visiting Addison.) She had the nerve to tell me "You wouldn't get away with that behavior if you were breastfeeding." Thank you, nurse who knows nothing about me or my children, for reminding me yet again how my body failed me. I could not pump enough breastmilk to feed the twins and breastfeeding did not work. But thanks for critiquing my parenting. Plus cut me some slack, I was new at parenting and he had only been home for a day or two at the most. I was doing the best I could at the time.
And who could forget about the nurse who told me "Blake was drinking to slowly and I didn't have time to be bothered so I just tube fed him the rest of his bottle." NOT COOL, especially when we were working toward all oral feeds for discharge. He had been doing great for a day or two and suddenly "you couldn't be bothered".
There are ways to address parents. No you don't have to walk on egg shells but be compassionate and considerate. No way I could let that nurse continue to care for him. Unfortunatly due to staffing issues, we also had her the night before discharge, but I was staying the night with him. I walked in for the night and this nurse tells me. "He had a Brady last feeding, they aren't sending him home." My heart sank and I almost lost my cool. Instead I took a deep breath and asked to talk to the NP, I had already knew about the Brady episode, and he was coming home on a monitor, never once during the day shift was I told that wasn't happening. The NP was equally confussed and assured me that all things still pointed to homecoming and even informed the nurse of this. Thankfully from that point forward the night went smoothly and yes Blake came home the next day.
This is not to say that I haven't made a judgement call too quickly. I remember in the beginning of our NICU stay one nurse had Addison for several shifts. I was so frustrated because I felt like this nurse was just poking and proding at my fragile baby more then needed. As I came out of the haze of everything that as happening, I realized that same nurse who I complained about and felt like was "doing too much" was actually a HUGE player in Addison's survival. At the time I didn't realize just how sick Addison was and that this was all "needed" for her to survive. Once it all clicked, I felt horrible, just horrible. I will forever be greatful for this nurse, and even more greatful that she gracefully accepted my apologies and forgave me for my ignorance. Not only is she an amazing nurse, but she is a beautiful person for handling it all with grace. (P.s. if you are reading this, I am also sorry that my daughter is as stubborn as me and gave you such a run for your money those nights/days.)
I think she did a fabulous job of reminding her collegues how important a parent's role in the NICU can be, and how important it is not to loose sight of the fact that "we" as parents need support and care to. Be it taking the time to help a mom hold her baby for the first (or 31st) time or reassuring them, when they call at 2am, that their little one is just fine. I have seen a small handful of nurses (and even doctors) who often loose sight and focus soley on caring for the preemie (which yes is their maing job, but the letting the parents play a role is HUGE).
First I want to say that I am so lucky that I personally didn't encounter mainy of these situations during our 153 day (total) NICU stay. Most of our nurses were absolutely fabulous and treated me with such respect and compassion. They often offered to include me in the care of Addison and Blake, be it taking a temperature, changing a diaper, or giving a bath. The nurses who had Blake and Addison most often became like family to us. I never felt like I was bothering them if I called 1 time or 25 times during their shift. And I always knew that the twins were in great hands if I couldn't be there. Those nurses made me that comfortable and made a very trying & stressful time in my life that much easier to get through.
Yes we did have 2 nurses who were my least favorite and always seemed too busy to be bothered. And both of them were removed from their care team. I sat in the NICU and watched a nurse tell Addison "Oh behave and stop being foolish" and ignoring her "High Stat" alarm instead of turning down her O2 for over 15 minutes while she checked her email and sent a text message. This was the same nurse who gave me flack for trying to soothe Blake and not immediately picking him up and cuddling him when he was screaming his head off and I was trying to make a bottle, and as soon as it was made I stuck it in his mouth long enough for him to settle so I could pick him up. (This was once Blake was discharged and we were visiting Addison.) She had the nerve to tell me "You wouldn't get away with that behavior if you were breastfeeding." Thank you, nurse who knows nothing about me or my children, for reminding me yet again how my body failed me. I could not pump enough breastmilk to feed the twins and breastfeeding did not work. But thanks for critiquing my parenting. Plus cut me some slack, I was new at parenting and he had only been home for a day or two at the most. I was doing the best I could at the time.
And who could forget about the nurse who told me "Blake was drinking to slowly and I didn't have time to be bothered so I just tube fed him the rest of his bottle." NOT COOL, especially when we were working toward all oral feeds for discharge. He had been doing great for a day or two and suddenly "you couldn't be bothered".
There are ways to address parents. No you don't have to walk on egg shells but be compassionate and considerate. No way I could let that nurse continue to care for him. Unfortunatly due to staffing issues, we also had her the night before discharge, but I was staying the night with him. I walked in for the night and this nurse tells me. "He had a Brady last feeding, they aren't sending him home." My heart sank and I almost lost my cool. Instead I took a deep breath and asked to talk to the NP, I had already knew about the Brady episode, and he was coming home on a monitor, never once during the day shift was I told that wasn't happening. The NP was equally confussed and assured me that all things still pointed to homecoming and even informed the nurse of this. Thankfully from that point forward the night went smoothly and yes Blake came home the next day.
This is not to say that I haven't made a judgement call too quickly. I remember in the beginning of our NICU stay one nurse had Addison for several shifts. I was so frustrated because I felt like this nurse was just poking and proding at my fragile baby more then needed. As I came out of the haze of everything that as happening, I realized that same nurse who I complained about and felt like was "doing too much" was actually a HUGE player in Addison's survival. At the time I didn't realize just how sick Addison was and that this was all "needed" for her to survive. Once it all clicked, I felt horrible, just horrible. I will forever be greatful for this nurse, and even more greatful that she gracefully accepted my apologies and forgave me for my ignorance. Not only is she an amazing nurse, but she is a beautiful person for handling it all with grace. (P.s. if you are reading this, I am also sorry that my daughter is as stubborn as me and gave you such a run for your money those nights/days.)
Friday, August 3, 2012
Remembering where we came from...
Today I decided it was time for a long over due visit to the NICU. Recently the hospital where I delivered the twins underwent some major renovations and the NICU was moved in to the "new" building and completely remodeled. When the twins were in the NICU it was "pod" style, one open room with beds along the walls all the way around. Now they have private rooms, including two "twin rooms". They just recently transitioned and we had been just waiting until things were settled to stop by and visit (and check out the new digs).
The new unit is absolutely gorgeous. There is a nice pleasant waiting room before you enter, and a view of The Mother's Garden. It was nice to see all the great nurses and NP's again and they were very excited to see the twins. They also got a good laugh and got to "aw" over Blake... The phone rang in the unit and Blake turned around and said "Helwoah", they melted. ;) Once our visit was over we walked out to The Mother's Garden to take a pic and we also tossed in two pennies and made a wish for healthy NICU babies. I am glad we took the time to do that, because as soon as we came back in we bumped in to Dr. D. the NEO who was in the OR with me and on Addison's team. She also cared for them both for a good portion of their NICU stay. She saw the ugly and the good during their stay.
I will forever be grateful for the amazing miracles the medical team there did for us and they will always hold a place in our hearts.
It's hard to believe how little they were a year ago... I found this picture when I was flipping through the memory card on my camera... Too cute right?
And here's one from tonight, they really love their chairs.
Ignore the silly faces, they hate the flash.
Lately we've been spending some time coloring. It's a good fine motor exercise and they seem to enjoy it, so I was excited to buy them their first coloring books. (Note: we are still working on coloring in the lines. LOL)
Blake got a little carried away and attempted to eat crayons drew on his mouth. He's thinking ("Great mom, blog this picture, it's gonna come back to haunt me one day...sigh").
I am sure I'll have lots more for you after this weekend... We've got Daddy all weekend for the first time all summer...TWO WHOLE DAYS...whatever will we do?!?!
The new unit is absolutely gorgeous. There is a nice pleasant waiting room before you enter, and a view of The Mother's Garden. It was nice to see all the great nurses and NP's again and they were very excited to see the twins. They also got a good laugh and got to "aw" over Blake... The phone rang in the unit and Blake turned around and said "Helwoah", they melted. ;) Once our visit was over we walked out to The Mother's Garden to take a pic and we also tossed in two pennies and made a wish for healthy NICU babies. I am glad we took the time to do that, because as soon as we came back in we bumped in to Dr. D. the NEO who was in the OR with me and on Addison's team. She also cared for them both for a good portion of their NICU stay. She saw the ugly and the good during their stay.
I will forever be grateful for the amazing miracles the medical team there did for us and they will always hold a place in our hearts.
It's hard to believe how little they were a year ago... I found this picture when I was flipping through the memory card on my camera... Too cute right?
And here's one from tonight, they really love their chairs.
Lately we've been spending some time coloring. It's a good fine motor exercise and they seem to enjoy it, so I was excited to buy them their first coloring books. (Note: we are still working on coloring in the lines. LOL)
And here they are showing off their work...
I am sure I'll have lots more for you after this weekend... We've got Daddy all weekend for the first time all summer...TWO WHOLE DAYS...whatever will we do?!?!
Sunday, March 13, 2011
There is a reason why I hate rollercoasters...
Doctors, nurses, NICU staff as well as other NICU parents all refer to the NICU journey as a rollercoaster. Filled with ups and downs, good days and bad days. Some days those good days are really good and some days those bad days are really bad, and then of course there are all those days in between. Like being on a rollercoaster, going up is always fun an exciting for most people, but for me I hate it because I always know there is going to be a drop somewhere that may be scary. So even when the babies have good days, I hold my breath and pray that the trip down isn't very long or steep.
Case in point...after what I would call a pretty bumpy week we get to yesterday and things are starting to turn upward again. After Blake's on/off relationship with photo therapy for his high bilirubin count/jaundice his is once again back OFF of photo therapy. Addison's still on the Oscallitor but the doctor believes today she maybe able to come off and go back on to the regular vent. And both babies are back to getting their feedings. Great news right? Right. But here's the "hiccup" the doctor wants to try steroids to help mature their lungs and get them off on the ventilators all together. The catch is that those steroids do not come without their own set of risks, risks that could or could not be caused the steroids in themselves.
All of the risk factors are quite possible with preemies on their own who've never gotten steroids. So the choice is, give them a medicine that could mature their lungs and get them over this "plateau" of sorts and potentially worsen their over all condition at the very least temporarily but possibly for life. OR do nothing, keep praying that their lungs will mature and heal and continue to wait which could also cause it's own issues as far as brain development and overall lung function. This marks the first decision that we've had to make as parents since they've entered the world. But there is some hope, they don't want to start steroid treatment for a week to two weeks and a different Neonatologist will be caring for the twins starting next week. As our current Neo mentions it is possible that he may have a different opinion or idea that could result in the same outcome ( = bye bye ventilators) so he recommended that we discuss it further with this Neo before making our decision.
So until its actually decision time I am going to keep right on praying that God will guide us to the right choice or even make the choice for us. We are asking that are friends and family do the same thing and pray for us. This is one topic that we do not want to discuss in any greater detail with anyone, and we don't want any outside advice on what to do, because at the end of the day we have to be able to live with the decision and outcome for the rest of our lives.
And now I leave you will pictures of Little Rascal (dubbed this by his nurses)...And of course Princess Addison herself (please forgive her she was a little "dopey" thanks to her Fentanyl drip).
Little Rascal - Blake
Princess Addison - notice she is holding on to the tube hence the reason for the sedative...they really don't want her yanking on that.
And one more for good measure, this your laugh for the day...This would be Jake aka Baby Daddy...passed out while I was in the the breast feeding room at the hospital. Too bad I don't have a sound bite to go with it because I am pretty sure I heard snoring.
Case in point...after what I would call a pretty bumpy week we get to yesterday and things are starting to turn upward again. After Blake's on/off relationship with photo therapy for his high bilirubin count/jaundice his is once again back OFF of photo therapy. Addison's still on the Oscallitor but the doctor believes today she maybe able to come off and go back on to the regular vent. And both babies are back to getting their feedings. Great news right? Right. But here's the "hiccup" the doctor wants to try steroids to help mature their lungs and get them off on the ventilators all together. The catch is that those steroids do not come without their own set of risks, risks that could or could not be caused the steroids in themselves.
All of the risk factors are quite possible with preemies on their own who've never gotten steroids. So the choice is, give them a medicine that could mature their lungs and get them over this "plateau" of sorts and potentially worsen their over all condition at the very least temporarily but possibly for life. OR do nothing, keep praying that their lungs will mature and heal and continue to wait which could also cause it's own issues as far as brain development and overall lung function. This marks the first decision that we've had to make as parents since they've entered the world. But there is some hope, they don't want to start steroid treatment for a week to two weeks and a different Neonatologist will be caring for the twins starting next week. As our current Neo mentions it is possible that he may have a different opinion or idea that could result in the same outcome ( = bye bye ventilators) so he recommended that we discuss it further with this Neo before making our decision.
So until its actually decision time I am going to keep right on praying that God will guide us to the right choice or even make the choice for us. We are asking that are friends and family do the same thing and pray for us. This is one topic that we do not want to discuss in any greater detail with anyone, and we don't want any outside advice on what to do, because at the end of the day we have to be able to live with the decision and outcome for the rest of our lives.
And now I leave you will pictures of Little Rascal (dubbed this by his nurses)...And of course Princess Addison herself (please forgive her she was a little "dopey" thanks to her Fentanyl drip).
And one more for good measure, this your laugh for the day...This would be Jake aka Baby Daddy...passed out while I was in the the breast feeding room at the hospital. Too bad I don't have a sound bite to go with it because I am pretty sure I heard snoring.
Friday, March 11, 2011
Two days later and...
Addison is still "sick"... she is now back on the Oscillator Ventilator because her CO2 levels are elevated and her lungs look worse on her chest xray. In addition to the change, the doctor also added her to yet another antibiotic. This however is a good thing because it means that now she is receiving antibiotics for just about every possible bacteria and now this should set her in the right direction. They are thinking that part of this set back could be because she is or was borderline sepsis. It is so hard to she her back on the Oscillator. It takes me right back to those first few days when she was sooo critical and its worse when she looks up at me with sad eyes as if she is asking me to help her and I can't. The nurses said Ms. Addison was none to happy with this change and has been her feisty self (which is defiantly a very good thing). So for now the plan is to have her back on the regular vent within 48-72 hours... I am hoping for 48 hours (or sooner).
In Blake news...yesterday the doctor was concerned that maybe he had an infection because he wasn't the wiggle worm he can be, and he was having a lot of destats (oxygen level drops below 85 for more then a few seconds). We did dodge that bullet...he is back to his old self, (must have been the rain). He did however decide that he would show himself just before I left to come home for a bit, and had an apnea episode...his heart rate dropped extremely low and he destated. It took what seemed like forever to get him to get with it. What was worse was when it all started his chest wasn't moving and neither was he. Talk about scary for a Mommy. Finally the nurse practitioner fused at Blake and told him, one showoff a day and today was Addison's turn. Then suddenly he decided to behave himself, quite the rascal.
Emotionally as strong as I might seem on the outside, today was hard. And I can't even begin to act like I didn't have a breakdown or two. All I know right now is I just want our babies home with us.
Baby Weights - Addison 1 lb 15 ozs (down 3 ozs from yesterday but this is a good thing because she is on Lasix to rid some of the fluid in her lungs, so it's a sign that it's working). Blake 2 lbs 5ozs (getting closer and closer...almost to the half way point of the 5ish pound weight requirement, among other things, to come home.)
In Blake news...yesterday the doctor was concerned that maybe he had an infection because he wasn't the wiggle worm he can be, and he was having a lot of destats (oxygen level drops below 85 for more then a few seconds). We did dodge that bullet...he is back to his old self, (must have been the rain). He did however decide that he would show himself just before I left to come home for a bit, and had an apnea episode...his heart rate dropped extremely low and he destated. It took what seemed like forever to get him to get with it. What was worse was when it all started his chest wasn't moving and neither was he. Talk about scary for a Mommy. Finally the nurse practitioner fused at Blake and told him, one showoff a day and today was Addison's turn. Then suddenly he decided to behave himself, quite the rascal.
Emotionally as strong as I might seem on the outside, today was hard. And I can't even begin to act like I didn't have a breakdown or two. All I know right now is I just want our babies home with us.
Baby Weights - Addison 1 lb 15 ozs (down 3 ozs from yesterday but this is a good thing because she is on Lasix to rid some of the fluid in her lungs, so it's a sign that it's working). Blake 2 lbs 5ozs (getting closer and closer...almost to the half way point of the 5ish pound weight requirement, among other things, to come home.)
Wednesday, March 9, 2011
No big surprise...
So this morning while visiting the babies, the doctor said that he feels confident that Addison is on the mend. They caught both the pneumonia and the staph infection in time and she is showing improvement. They increased her feeding to 10 cc every three hours and he still plans to try to ween her off the vent by the early part of next week.
Blake decided that he has had enough of Addison stealing all the attention and is trying to tell us he is a big boy. And how exactly did he do this you may ask...he decided to pull out his feeding tube today. His feedings were increased to 14 cc every three hours (so almost halfway to an ounce), and they had to insert a new feeding tube in order to give him his feedings. Silly boy, up to mischief already. (Just the other day he decided to disconnect his ventilator...)
There is also talk that Blake's PICC line may be coming out overnight (bye bye IV's!!!! for the most part). And they will try this will Addison early next week as well once she is done her 7 day course of antibiotics.
For those who are curious, the babies must be able to tolerate an ounce of breast milk at a time, no longer be on the ventilator and be able to "suck, swallow and breath" at the same time in order to be bottle or breast fed. The SSB reflect is said to kick in somewhere around the 32 to 34 week gestational age (for those keeping track the twins adjusted age is 29 weeks gestation.) So who knows that may be happening in the very near future...Needless to say I am beyond excited about that!Tuesday, March 8, 2011
Infections suck!
Addison now has an infection, the doctor *thinks* it's pneumonia and some of her cultures are showing staph (they aren't sure what kind yet, until they get the final report). Either of these alone can cause HUGE issues, combined it's worse. That being said, Addison is a fighter and loves to prove the doctors and nurses wrong just about every single day. We refuse to count her out...she will deal with this in her own time. In the meantime we will sit back and watch, comfort and pray. She continutes to progress otherwise and they are increasing her feedings. Her brain bleed remains unchanged at this point too. They will follow up on that on Monday.
Blake is...Blake. He is soooo close to "full feeds" of 1 oz at a time. He is also gaining weight and has officially hit the 2 lb mark! The doctor wants to ween his ventilator down and hopefully get him back on CPAP by next week at the lastest. His brain bleed has not gotten any worse at this point, and he has another follow up ultrasound this coming Monday.
As Jake said today for every "set back" or negative thing that happens, there are more positives to find hope and promise in.
Blake is...Blake. He is soooo close to "full feeds" of 1 oz at a time. He is also gaining weight and has officially hit the 2 lb mark! The doctor wants to ween his ventilator down and hopefully get him back on CPAP by next week at the lastest. His brain bleed has not gotten any worse at this point, and he has another follow up ultrasound this coming Monday.
As Jake said today for every "set back" or negative thing that happens, there are more positives to find hope and promise in.
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