Natalie continues to do well on the oscillating vent and NO. They are slowly weaning the NO down and she has been tolerating that well. Today she was given something similar to a PICC line so that she won't need constant IV changes. Placing the line was a long process and she needed to go up in her oxygen requirements from stress.
Thank you so very much for your continued support!
Friday, April 30, 2010
Wednesday, April 28, 2010
NICU Updates
I am way past tired so please forgive me for not proofreading. I hope this makes some sense.
Yesterday was "very eventful" for Natalie. We received a call from her doctor in the morning letting us know she had experienced some acute breathing issues in the early morning and they had to escalate her care. By the time we arrived at the hospital they were maximizing her respiratory support. This is incredibly frightening as there is no where else to go when things are already at their highest settings. The rest of the day was spent trying to hold on and get Natalie stabilized. She was put on an oscillating ventilator in the morning when the conventional vent failed to work for her. They also started her on inhaled nitric oxide (NO). The NO is what seemed to make the biggest difference and she showed a great response. When the doctor came to tell me her oxygen requirements first came down after the NO we stood in the hallway hugging. It is so comforting to have doctors emotionally invested in the care of your child.
The doctor met with us last night and offered her assurance that she felt this was something Natalie could pull through. They feel that the PDA (now closed), ibuprofen and immature hypoplastic lungs all became too much for her to take on at once. The oscillating vent and NO seem to be just what she needs right now. The NO dilates the blood vessels in her lungs and makes them less "twitchy." The oscillating vent takes about 700 breaths a minute for her and keeps her lungs open gently.
Yesterday four people attempted multiple times to place an arterial line. Thankfully one is now in place so they can monitor her blood gases more accurately and sample her blood without multiple sticks. She is also sedated to allow her body time to rest and let the vent do its job.
Since last night she continues to improve and is now at 33% oxygen (down from 100% yesterday) and they have slowly started to wean her from the NO. They plan to move very slowly and gently from this point. Our hope is that she has a great time of stability so that her lungs will grow and produce more normal alveoli.
We saw Natalie this evening and she is as beautiful as ever. We only looked briefly as lifting the quilt to her incubator can be agitating for her and she needs as much peace and calm as possible.
We ask for your continued prayers for Natalie's health and for our family to have the strength to face the battles of the NICU. Yesterday as we finally made it to bed we both looked at one another and the consensus was "worst day of our lives." Life in the NICU can mean being thrown from one extreme emotion to another and it is more challenging than we thought possible.
Last night I reminded myself of all the things I have to be grateful for. The love and support of our family, the radiance of Anneliese, the strength of my marriage and the tenacity of Natalie. We have so much to hold onto right now and that makes all the difference.
Again, I will try to update as much as possible. Right now I am trying my best to regroup physically and spend as much of my awake time at home with Anneliese. We are enjoying being back together at home and she has been my constant companion. I will leave you with the song she made up for me the first night I was home. "I hugged you and you hugged me....we're together and I loooove you."
Yesterday was "very eventful" for Natalie. We received a call from her doctor in the morning letting us know she had experienced some acute breathing issues in the early morning and they had to escalate her care. By the time we arrived at the hospital they were maximizing her respiratory support. This is incredibly frightening as there is no where else to go when things are already at their highest settings. The rest of the day was spent trying to hold on and get Natalie stabilized. She was put on an oscillating ventilator in the morning when the conventional vent failed to work for her. They also started her on inhaled nitric oxide (NO). The NO is what seemed to make the biggest difference and she showed a great response. When the doctor came to tell me her oxygen requirements first came down after the NO we stood in the hallway hugging. It is so comforting to have doctors emotionally invested in the care of your child.
The doctor met with us last night and offered her assurance that she felt this was something Natalie could pull through. They feel that the PDA (now closed), ibuprofen and immature hypoplastic lungs all became too much for her to take on at once. The oscillating vent and NO seem to be just what she needs right now. The NO dilates the blood vessels in her lungs and makes them less "twitchy." The oscillating vent takes about 700 breaths a minute for her and keeps her lungs open gently.
Yesterday four people attempted multiple times to place an arterial line. Thankfully one is now in place so they can monitor her blood gases more accurately and sample her blood without multiple sticks. She is also sedated to allow her body time to rest and let the vent do its job.
Since last night she continues to improve and is now at 33% oxygen (down from 100% yesterday) and they have slowly started to wean her from the NO. They plan to move very slowly and gently from this point. Our hope is that she has a great time of stability so that her lungs will grow and produce more normal alveoli.
We saw Natalie this evening and she is as beautiful as ever. We only looked briefly as lifting the quilt to her incubator can be agitating for her and she needs as much peace and calm as possible.
We ask for your continued prayers for Natalie's health and for our family to have the strength to face the battles of the NICU. Yesterday as we finally made it to bed we both looked at one another and the consensus was "worst day of our lives." Life in the NICU can mean being thrown from one extreme emotion to another and it is more challenging than we thought possible.
Last night I reminded myself of all the things I have to be grateful for. The love and support of our family, the radiance of Anneliese, the strength of my marriage and the tenacity of Natalie. We have so much to hold onto right now and that makes all the difference.
Again, I will try to update as much as possible. Right now I am trying my best to regroup physically and spend as much of my awake time at home with Anneliese. We are enjoying being back together at home and she has been my constant companion. I will leave you with the song she made up for me the first night I was home. "I hugged you and you hugged me....we're together and I loooove you."
Monday, April 26, 2010
B Positive
I am sorry for the lack of updates. I came home last night and the past few days have proven to be challenging. Who knew recovering from a C-section, looking after a toddler and having a child in intensive care would be so stressful? Ha.
I will be brief but want to let you know how Natalie is. Over the past few days her oxygen requirements have been creeping up. She is still on the vent and now at 60% oxygen. Her chest X-rays have also been progressively showing more fluid in her lungs. The hope was that this was all due to the PDA and would resolve when it closed. The echocardiogram this morning showed that the PDA is closed, so we are very much hoping that the fluid and breathing improves and the PDA was responsible. Immature lungs or hypoplastic lungs (from the low amniotic fluid) could also be behind this and those issues are much more complicated to resolve. She is still breathing very rapidly and we are also hoping that improves soon as well.
She had her first dose of Lasix today to help pull the fluid out of her lungs. She will have one dose a day for three days. Lasix can be stressful on the kidneys and cause electrolyte imbalances so she will be closely monitored for any issues. She also had her first blood transfusion today. Her blood type is B positive-a very good omen in my opinion!
Today was the greatest milestone so far. Her nurse allowed me to hold her for the first time. It was a production that required 3 nurses to pull off but it was AMAZING. It was as if a missing piece of me had been returned. Natalie was stressed during the transition but quickly settled in and was quite content. She had a hard time settling down when returned to her isolette. I think after having a taste of the good life snuggling with Mommy she did not want to return to her bed.
Please keep Natalie in your thoughts and prayers. We are hoping so much for some improvements in the next few days. She is such a beautiful and strong girl. Thank you again for all your support. We need it now more than ever.
I will be brief but want to let you know how Natalie is. Over the past few days her oxygen requirements have been creeping up. She is still on the vent and now at 60% oxygen. Her chest X-rays have also been progressively showing more fluid in her lungs. The hope was that this was all due to the PDA and would resolve when it closed. The echocardiogram this morning showed that the PDA is closed, so we are very much hoping that the fluid and breathing improves and the PDA was responsible. Immature lungs or hypoplastic lungs (from the low amniotic fluid) could also be behind this and those issues are much more complicated to resolve. She is still breathing very rapidly and we are also hoping that improves soon as well.
She had her first dose of Lasix today to help pull the fluid out of her lungs. She will have one dose a day for three days. Lasix can be stressful on the kidneys and cause electrolyte imbalances so she will be closely monitored for any issues. She also had her first blood transfusion today. Her blood type is B positive-a very good omen in my opinion!
Today was the greatest milestone so far. Her nurse allowed me to hold her for the first time. It was a production that required 3 nurses to pull off but it was AMAZING. It was as if a missing piece of me had been returned. Natalie was stressed during the transition but quickly settled in and was quite content. She had a hard time settling down when returned to her isolette. I think after having a taste of the good life snuggling with Mommy she did not want to return to her bed.
Please keep Natalie in your thoughts and prayers. We are hoping so much for some improvements in the next few days. She is such a beautiful and strong girl. Thank you again for all your support. We need it now more than ever.
Thursday, April 22, 2010
Day 2
Natalie did very well her first day in the NICU. Every neonatologist we saw was grinning and clearly thrilled with her. She is not the baby they had been warned about for months. Over the course of the day and into the night her vent settings were lowered. When we said goodnight the doctor said he expected her to be off the vent and onto C-PAP (a lower level of breathing assistance) by the next day. At 4 am we received word that she had been taken off the vent and was doing very well. It was an incredible feeling of success.
As we had been warned, the NICU is more of a roller coaster than a straight line of progress. This morning her oxygen levels had to be continually raised and chest X-ray showed that her lungs were hazy and not as inflated as the day before. The doctors decided to try another dose of surfactant so she was intubated again. They left the breathing tube in and put her on the vent to watch her progress. The surfactant helped some, but was not the solution we were looking for.
This afternoon she had an echocardiogram and a large PDA (patent ductus arteriosus)was found. PDA occurs when the connecting blood vessel between the pulmonary artery and the aorta in fetal circulation, called the ductus arteriosus, stays open in a newborn baby. For a preemie this can cause respiratory stress and make distributing oxygen difficult. The cardiologist said her PDA is so large that it is the same diameter as her aorta. It is very likely that this is the source of her respiratory distress. I many ways this is a relief to me as a PDA is a clear cut diagnosis and there are well established treatment plans.
She will receive her first dose of indomethacin tonight in hope of closing the PDA. There are three doses given 12 hours apart in each round. If the first round fails to close it adequately she will receive one more round. If that too fails she will need surgery. The doctor feels one way or another the issue should be resolved by the end of the weekend.
While she is on the indomethacin feeding her is out of the question. She is still receiving her nutrition intravenously through TPN. I am really hoping to have her stabilized soon so she can start getting milk.
The neonatologist explained that she is more complicated to treat and diagnose because to some extent her lungs are still an unknown. She does feel confident, though, that we will primarily be dealing with complications from prematurity and that her lungs are much better than anticipated.
We are amazed by our little girl and falling more and more in love. She is so strong and has endured her medical interventions incredibly well. I am in awe of her. It is such a struggle to be down the hall and away from her. I still find myself rubbing my belly (now more of a defated dough ball) and waiting to feel her kicks.
The reality of having a baby in the NICU is settling in. My overriding emotion is sheer gratitude that she is here and doing so well. Countless times a day I am struck all over again that she is born, she is breathing and she is ours to keep. At the same time, seeing your daughter need this degree of medical assistance is difficult and I long for the day I can actually hold her and care for her on my own. I am eager to finally put aside some of the constant worry that has been with us for months and not have so many medical uncertainties to face everyday. We have already overcome great odds to get this far and I am confident that we will get through this time as well.
I myself am dealing with a new level of fatigue. Coming off from 15 weeks of bed rest, recovering from the C-section and anemia from the abruption and surgery (my uterus would not contract so I had additional blood loss) is taking it's toll on me. I have hopes of focusing on rest, pumping and Natalie for the remainder of my stay. I need to build up some endurance for returning home.
I have so much more to say about our remarkable little girl but I suppose I need to start committing to more rest now. Thank you all for your continued support. Being with Natalie feels like witnessing a miracle and while it is a challenging time these are also euphoric days. I am so happy to share her story with you.
As we had been warned, the NICU is more of a roller coaster than a straight line of progress. This morning her oxygen levels had to be continually raised and chest X-ray showed that her lungs were hazy and not as inflated as the day before. The doctors decided to try another dose of surfactant so she was intubated again. They left the breathing tube in and put her on the vent to watch her progress. The surfactant helped some, but was not the solution we were looking for.
This afternoon she had an echocardiogram and a large PDA (patent ductus arteriosus)was found. PDA occurs when the connecting blood vessel between the pulmonary artery and the aorta in fetal circulation, called the ductus arteriosus, stays open in a newborn baby. For a preemie this can cause respiratory stress and make distributing oxygen difficult. The cardiologist said her PDA is so large that it is the same diameter as her aorta. It is very likely that this is the source of her respiratory distress. I many ways this is a relief to me as a PDA is a clear cut diagnosis and there are well established treatment plans.
She will receive her first dose of indomethacin tonight in hope of closing the PDA. There are three doses given 12 hours apart in each round. If the first round fails to close it adequately she will receive one more round. If that too fails she will need surgery. The doctor feels one way or another the issue should be resolved by the end of the weekend.
While she is on the indomethacin feeding her is out of the question. She is still receiving her nutrition intravenously through TPN. I am really hoping to have her stabilized soon so she can start getting milk.
The neonatologist explained that she is more complicated to treat and diagnose because to some extent her lungs are still an unknown. She does feel confident, though, that we will primarily be dealing with complications from prematurity and that her lungs are much better than anticipated.
We are amazed by our little girl and falling more and more in love. She is so strong and has endured her medical interventions incredibly well. I am in awe of her. It is such a struggle to be down the hall and away from her. I still find myself rubbing my belly (now more of a defated dough ball) and waiting to feel her kicks.
The reality of having a baby in the NICU is settling in. My overriding emotion is sheer gratitude that she is here and doing so well. Countless times a day I am struck all over again that she is born, she is breathing and she is ours to keep. At the same time, seeing your daughter need this degree of medical assistance is difficult and I long for the day I can actually hold her and care for her on my own. I am eager to finally put aside some of the constant worry that has been with us for months and not have so many medical uncertainties to face everyday. We have already overcome great odds to get this far and I am confident that we will get through this time as well.
I myself am dealing with a new level of fatigue. Coming off from 15 weeks of bed rest, recovering from the C-section and anemia from the abruption and surgery (my uterus would not contract so I had additional blood loss) is taking it's toll on me. I have hopes of focusing on rest, pumping and Natalie for the remainder of my stay. I need to build up some endurance for returning home.
I have so much more to say about our remarkable little girl but I suppose I need to start committing to more rest now. Thank you all for your continued support. Being with Natalie feels like witnessing a miracle and while it is a challenging time these are also euphoric days. I am so happy to share her story with you.
Wednesday, April 21, 2010
A Sweet Miracle Girl
I do not have the clarity to really write but I don't want to leave people hanging. Ms. Natalie is still doing well in the NICU. She is remains on a vent and is breathing room air. She has also had several blood gases and they are "beautiful." The next two days are a critical time and should be a good indicator of how she will do. So far she is exceeding everyone's expectations!
We are both in such a wonderful state of joyful shock. Thank you so much for your thoughts and prayers. Please keep them coming as Natalie begins her NICU journey. I promise to keep updates coming and will hopefully be able to share her birth story soon.
Natalie Evelyn Teegarden
Natalie Evelyn was born April 21, 2010n at 9:17am weighing 4lbs 4 oz. She cried!!!!
She is in the NICU on a vent but only on a room air setting. Everyone says she is darling.
The next 72 hours will tell us a lot about her pulmonary function but so far she is doing really well.
I will update as I can. Thank you all so much for your love and support. Please keep Natalie in your prayers as she adjusts to life on the outside.
She is in the NICU on a vent but only on a room air setting. Everyone says she is darling.
The next 72 hours will tell us a lot about her pulmonary function but so far she is doing really well.
I will update as I can. Thank you all so much for your love and support. Please keep Natalie in your prayers as she adjusts to life on the outside.
Friday, April 16, 2010
33 Weeks
Things have returned to a relatively boring state. I am constantly in awe of how my status can fluctuate so quickly. On Thursday it really felt as though we had reached a turning point. Now we are back to no bleeding, very few contractions and Baby Girl has been passing her NSTs with flying colors. I am so grateful to be able to say all of that.
Now that delivery is set (April 26th) the mood here has changed a bit. In many ways I am relieved. Originally the plan was to deliver me at 35 weeks. I was not at all comfortable with that. To me that is an extra week of sitting here waiting for infection or cord compression when that week does not offer substantial benefits to the baby. The NICU doctor and maternal fetal specialist agreed, especially considering that the pregnancy has not exactly been calm lately. I was allowed to choose the doctor performing the C-section. Normally you get whoever happens to be the attending that week but I was not comfortable with getting a random doctor. There are so many in this practice and I can't say I have much of a relationship with any of them. Some make me downright uneasy. Being able to choose a doctor I feel confident with has eased my mind considerably.
We also now know the neonatologist who will be working the week we deliver. We both feel she is compassionate and competent. I sense that she herself feels hope for Baby Girl and wants to see her do well.
Now that everything is in place all that is left to do is move through time and arrive at next Monday safely. Things may not go according to plan and delivery could be any day, but we now have a set goal to work towards. I am doing my best to stay calm and focused. I have always told myself that if it were possible to bring her here through sheer force of will then I would. When things are shaky I hold onto that and it helps to refocus my attitude.
This week one of my favorite words has been "No." There are two palliative care researchers here interested in interviewing women such as myself who have continued a pregnancy with a poor prognosis. Originally I agreed to be interviewed as it is hard to say no to a good cause. I have found, though, that the closer we get to delivery the less I want to talk about it (and the more everyone who walks into my room wants to discuss my feelings). I realized that I am really not up for a lengthy discussion about the trials of this pregnancy and declined. Such a relief to not be waiting for that knock on my door.
Then yesterday the attending decided I might have preeclampsia based on a handful of slightly elevated blood pressures. My BP has been trending up, but that is not uncommon in this stage of pregnancy. More importantly, not a single BP has actually qualified as being high, they are just higher than my normal. It seems when you enter a hospital that the doctors feel they have absolute rights over your body and can put you through whatever they ask without a lot of consideration. This doctor decided, to play it extra safe, that I should have a catheter for 24 hours to screen for preeclampsia. I am leaking amniotic fluid so a traditional urine collection would be inaccurate. Preeclampsia is very serious and I don't take it lightly. However, I am also not subjecting myself to a catheter and the risk of infection when I do not actually have high blood pressure. I refused the catheter, annoyed some people but have been sitting here with very normal BP ever since.
Do I sound cranky? I feel a little cranky and have been apologizing a lot for my attitude. I sometimes feel that I have taken a departure from my normal personality and hope this is just temporary hospital induced craziness. Seriously, though, you should pity the poor fool who comes into my room suggesting a catheter for no good reason.
Despite all of my tension, today there is a wonderful bright spot in my life that has left me smiling all day. One of my fellow pPROM moms, Amber, gave birth to her daughter this morning. She is in the NICU and doing very well. Amber ruptured very early, much like I did, and has been an incredible woman throughout her pregnancy. I am so thrilled that her little girl is here and fighting. They will all be in my thoughts and prayers as she grows stronger every day.
Being a part of the "pPROM community" has been an emotional experience for me. There are so many women who have to say goodbye to their babies far to early and each loss is devastating. The mothers and babies I have grown to know and care about along the way will always be in my heart.
This pregnancy has been about 5 years long, so to see an end date so close on the calendar boggles my mind. I sort of thought I really would be pregnant forever. I appreciate all the good thoughts and prayers as we enter this final week of pregnancy and prepare to welcome our new daughter. It is an emotional time but I have learned that even when it doesn't seem possible you really can dig deeper and find more strength.
Now that delivery is set (April 26th) the mood here has changed a bit. In many ways I am relieved. Originally the plan was to deliver me at 35 weeks. I was not at all comfortable with that. To me that is an extra week of sitting here waiting for infection or cord compression when that week does not offer substantial benefits to the baby. The NICU doctor and maternal fetal specialist agreed, especially considering that the pregnancy has not exactly been calm lately. I was allowed to choose the doctor performing the C-section. Normally you get whoever happens to be the attending that week but I was not comfortable with getting a random doctor. There are so many in this practice and I can't say I have much of a relationship with any of them. Some make me downright uneasy. Being able to choose a doctor I feel confident with has eased my mind considerably.
We also now know the neonatologist who will be working the week we deliver. We both feel she is compassionate and competent. I sense that she herself feels hope for Baby Girl and wants to see her do well.
Now that everything is in place all that is left to do is move through time and arrive at next Monday safely. Things may not go according to plan and delivery could be any day, but we now have a set goal to work towards. I am doing my best to stay calm and focused. I have always told myself that if it were possible to bring her here through sheer force of will then I would. When things are shaky I hold onto that and it helps to refocus my attitude.
This week one of my favorite words has been "No." There are two palliative care researchers here interested in interviewing women such as myself who have continued a pregnancy with a poor prognosis. Originally I agreed to be interviewed as it is hard to say no to a good cause. I have found, though, that the closer we get to delivery the less I want to talk about it (and the more everyone who walks into my room wants to discuss my feelings). I realized that I am really not up for a lengthy discussion about the trials of this pregnancy and declined. Such a relief to not be waiting for that knock on my door.
Then yesterday the attending decided I might have preeclampsia based on a handful of slightly elevated blood pressures. My BP has been trending up, but that is not uncommon in this stage of pregnancy. More importantly, not a single BP has actually qualified as being high, they are just higher than my normal. It seems when you enter a hospital that the doctors feel they have absolute rights over your body and can put you through whatever they ask without a lot of consideration. This doctor decided, to play it extra safe, that I should have a catheter for 24 hours to screen for preeclampsia. I am leaking amniotic fluid so a traditional urine collection would be inaccurate. Preeclampsia is very serious and I don't take it lightly. However, I am also not subjecting myself to a catheter and the risk of infection when I do not actually have high blood pressure. I refused the catheter, annoyed some people but have been sitting here with very normal BP ever since.
Do I sound cranky? I feel a little cranky and have been apologizing a lot for my attitude. I sometimes feel that I have taken a departure from my normal personality and hope this is just temporary hospital induced craziness. Seriously, though, you should pity the poor fool who comes into my room suggesting a catheter for no good reason.
Despite all of my tension, today there is a wonderful bright spot in my life that has left me smiling all day. One of my fellow pPROM moms, Amber, gave birth to her daughter this morning. She is in the NICU and doing very well. Amber ruptured very early, much like I did, and has been an incredible woman throughout her pregnancy. I am so thrilled that her little girl is here and fighting. They will all be in my thoughts and prayers as she grows stronger every day.
Being a part of the "pPROM community" has been an emotional experience for me. There are so many women who have to say goodbye to their babies far to early and each loss is devastating. The mothers and babies I have grown to know and care about along the way will always be in my heart.
This pregnancy has been about 5 years long, so to see an end date so close on the calendar boggles my mind. I sort of thought I really would be pregnant forever. I appreciate all the good thoughts and prayers as we enter this final week of pregnancy and prepare to welcome our new daughter. It is an emotional time but I have learned that even when it doesn't seem possible you really can dig deeper and find more strength.
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