We just spoke to Farrah's nurse and doctor and learned that Farrah has had a small setback this evening after 8 pm. She had been doing so well with her breathing and they were able to wean a lot on her oxygen support on the vent during the past few days. Tonight, they did an x-ray after she seemed to be struggling out of nowhere and determined that she has a condition known as PIE (pulmonary interstitial emphesema) of her left lung. They re-intubated Farrah with a new breathing tube and started thinking about what would help Farrah. The quickest way to resolve this issue of PIE is to put her back on a high frequency vent, but instead of the oscillator, they are going to use a ventilator referred to as a jet. Her care team is not that concerned about this change, but we are taken aback by it. You'd think after all the ups and downs we have been through that we would be prepared for other setbacks. It gives us such a feeling of helplessness. Farrah has been doing so well this week and was clearly feeling much better too. This change means that she needs to be sedated more often since the jet shakes her body just like the oscillator did. Our little Farrah is not out of the woods yet. From what I read online, PIE is more often seen with preemies soon after their birth and Farrah is dealing with this issue nearly two months after her birth. We pray that this does not add any other complications to Farrah's NICU journey.
Farrah is still getting stronger each day, but her lungs aren't as strong. When I visited her yesterday, I watched as she lifted her head completely off her bed and turned to face forward. I couldn't believe I was watching her move so much. She is a fiesty little one! Farrah's nurse yesterday was not too worried about her movements as long as she didn't turn her head far enough to tub on her breathing tube. We were really hoping that all this improvement with her lungs was a sign that she was well on her way to the ram cannula, but it looks like our hopes were a bit premature. It is hard to see this setback. We were getting so close to be able to hold her again, and now that day is a little further away.
Since Farrah has been tolerating the fortifier so far, they increased her feeds to 9 ccs per hour. They probably won't make any other changes to her feedings until sometime next week. I almost forgot to mention that the lumbar puncture cultures came back negative, so they decided to stop the antibiotics. Farrah has been receiveing the antibiotics for 21 days now and there are no signs of an active infection. We pray that she won't get any more infections during the rest of her time in the NICU.
While we wish that this weekend would be restful with lots of Farrah time, unfortunately it looks like we will both be working a lot. This is a big car sales weekend for Ray, and I have comes to terms with the fact that it is expected of me to do whatever it takes to meet my work's deadlines.
Thursday, August 30, 2012
Wednesday, August 29, 2012
A Great Day
As Farrah's nurse today put it - "Farrah had a great day!" First, some great news - Farrah's head ultrasound came back normal! We were so happy to hear this news, especially after the high levels of oxygen that Farrah was on in the past two weeks.
They were able to wean on the settings for the regular vent. In fact, they are already low enough that she may be able to come off the vent completely and go on to the ram cannula (nasal). That is a huge thing to pray for right now. Farrah's nurse noticed that Farrah's skin was looking a little dry and ended up giving her a sponge bath today. Farrah was not a big fan of her bath, but afterwards just lied in her bed looking all around. She has not needed any sedatives in the past two days and looks as if she is sleeping very comfortably.
They started Farrah on a fortifier this afternoon. It will give her an extra 22 calories per feed. Hopefully her body will accept the addition of the fortifier so she can get all the extra nutrients and calories that she needs. She is holding at 3 pounds, 13 ounces but it is now time for her to get over the four-pound mark.
I mentioned before that Ray is working long hours at a car dealership. He is working a commission-only sales position as he continues his job search. We are thankful for the opportunity he has to sell cars, as it provides extra income for our family. My transition back to work has not been as smooth as I had hoped, but we cannot afford to lose our health benefits right now. Please pray for both of our jobs - that Ray will find a full time job with great benefits and that I will be able to keep my current position as the demands increase from what they were before Farrah was born.
Ray and I have been overwhelmed by all of the support that we have received. For those who have mailed us something, thank you so much! If you have not received a thank you card, one should be coming in the near future. I have been taking photos of Farrah, but they are keeping her hospital room dark and the photos are not very good. Believe me when I say that she is looking very cute! When she can free her hands from the swaddle they keep her in, she reaches straight for her ears. Her pacifier still soothes her and gets to drifting off to sleep in no time. So many cute things about Farrah to share...
They were able to wean on the settings for the regular vent. In fact, they are already low enough that she may be able to come off the vent completely and go on to the ram cannula (nasal). That is a huge thing to pray for right now. Farrah's nurse noticed that Farrah's skin was looking a little dry and ended up giving her a sponge bath today. Farrah was not a big fan of her bath, but afterwards just lied in her bed looking all around. She has not needed any sedatives in the past two days and looks as if she is sleeping very comfortably.
They started Farrah on a fortifier this afternoon. It will give her an extra 22 calories per feed. Hopefully her body will accept the addition of the fortifier so she can get all the extra nutrients and calories that she needs. She is holding at 3 pounds, 13 ounces but it is now time for her to get over the four-pound mark.
I mentioned before that Ray is working long hours at a car dealership. He is working a commission-only sales position as he continues his job search. We are thankful for the opportunity he has to sell cars, as it provides extra income for our family. My transition back to work has not been as smooth as I had hoped, but we cannot afford to lose our health benefits right now. Please pray for both of our jobs - that Ray will find a full time job with great benefits and that I will be able to keep my current position as the demands increase from what they were before Farrah was born.
Ray and I have been overwhelmed by all of the support that we have received. For those who have mailed us something, thank you so much! If you have not received a thank you card, one should be coming in the near future. I have been taking photos of Farrah, but they are keeping her hospital room dark and the photos are not very good. Believe me when I say that she is looking very cute! When she can free her hands from the swaddle they keep her in, she reaches straight for her ears. Her pacifier still soothes her and gets to drifting off to sleep in no time. So many cute things about Farrah to share...
Tuesday, August 28, 2012
Like a Champ
Farrah's day nurse, Margaret, (also one of her primaries) told me that Farrah handled today's lumbar puncture (LP) like a champ. The nurse practitioner who did the LP is very experienced and was able to access Farrah's spinal fluid on her first attempt. They gave Farrah some sedation meds beforehand, and Margaret said that Farrah stayed very calm throughout the entire procedure. We won't have all the results from the LP for a few days.
Farrah also had a head ultrasound today and we are waiting to see what those results show. Farrah is still doing well on the regular vent and her oxygen settings were as low as 28% over the course of the day. Room air is 21%, so she is getting closer and closer. We just keep praying that her lungs will get stronger and stronger each day. She has not needed as much sedation medication on the regular vent, and we are thankful for that. We believe that they will try to add a fortifier in the next day or two to the breast milk Farrah is getting. We pray that Farrah's tummy will accept the fortifier and that she will be able to start packing on the pounds and growing more cells, which is what she would be doing in utero during these finals weeks before her due date.
We are attemping to go to sleep earlier tonight. Ray needed to point out to me that I was reaching a point of exhaustion after only one week of going back to work. It is not possible to keep going the way I am for the entire time that Farrah will remain in the NICU. Something has got to give. At this point, my managers are not offering any flexibility, but we are hoping that they will allow me to work from home a few days a week. As much as I want to be super woman, I have to slow down and take care of myself so that I do not get sick. Our schedules coincided tonight, so Ray and I were able to go out for a sit-down dinner together for the first time in a long time.
There are a lot of unknowns about what will happen when Farrah gets out of the hospital. We pray for peace that everything will work out as it should, as both our jobs are a bit up in the air and I am counting on the fact that my company will give me some type of leave.
Farrah also had a head ultrasound today and we are waiting to see what those results show. Farrah is still doing well on the regular vent and her oxygen settings were as low as 28% over the course of the day. Room air is 21%, so she is getting closer and closer. We just keep praying that her lungs will get stronger and stronger each day. She has not needed as much sedation medication on the regular vent, and we are thankful for that. We believe that they will try to add a fortifier in the next day or two to the breast milk Farrah is getting. We pray that Farrah's tummy will accept the fortifier and that she will be able to start packing on the pounds and growing more cells, which is what she would be doing in utero during these finals weeks before her due date.
We are attemping to go to sleep earlier tonight. Ray needed to point out to me that I was reaching a point of exhaustion after only one week of going back to work. It is not possible to keep going the way I am for the entire time that Farrah will remain in the NICU. Something has got to give. At this point, my managers are not offering any flexibility, but we are hoping that they will allow me to work from home a few days a week. As much as I want to be super woman, I have to slow down and take care of myself so that I do not get sick. Our schedules coincided tonight, so Ray and I were able to go out for a sit-down dinner together for the first time in a long time.
There are a lot of unknowns about what will happen when Farrah gets out of the hospital. We pray for peace that everything will work out as it should, as both our jobs are a bit up in the air and I am counting on the fact that my company will give me some type of leave.
One Step at a Time
As of Monday night, Farrah is back on the regular vent. Her weekend nurses were able to wean her oxygen to the point where she was on the lowest settings, and Monday's doctors decided to make the change. They moved Farrah to the vent at 12 noon, and so far she has tolerated the change wonderfully. They also did another echo (heart ultrasound) and determined that Farrah's heart looks great. There was a possibility of her having endocarditis because of the MRSA, but it is all clear. Plus, there is no evidence of the PDA coming back. What a relief that news is! At midnight, they changed Farrah from the giraffe bed back to a regular isolet. All good changes! As long as she can keep up with the regular vent, Ray and I should be able to hold Farrah again in the near future.
Tomorrow is another big day for Farrah. She will be having the lumbar puncture that I referred to a week or two ago. The infectious disease specialist who is overseeing her case recommended the lumbar puncture so they can be absolutely sure that there is no questionable signs of infection in Farrah's spinal fluid. We pray that it all goes smoothly and that the morphine will help Farrah tolerate the procedure well. She will also be having another head ultrasound to see if anything has changed after being so sick. The nurse practioner described everything as thoroughly looking at Farrah - head to toe.
The next step is to get Farrah on a fortifier. I learned today that Farrah is only in the third percentile in terms of growth, so I can now see why the doctors are pushing to add fortifier to her full feed feedings. We are hoping that we can try a new fortifier that is liquid, not powder, and that Farrah's tummy can handle it. If she cannot handle it, they will stop all feedings and go back to IV nutrition to give her tummy some time to recover. As of Monday, she weighs 3 pounds, 13 ounces.
In the words of one of Farrah's nurses's "Farrah still has a long way to go." Our energy is waning. Ray is gone for 10-12 hour stretches at his job and I am working my tail off at my job. We are both so tired at the end of the day and are lucky if we can get groceries purchased and laundry done in a week.
The baby shower this weekend was so much fun! It meant a lot to me that my grandmother, mother, and mother-in-law all made the trip to AZ to be there for the shower. Our local friends have been so supportive of us, and it was so nice to have many of them at the shower. Afterwards, my mother in law and I started to organize Farrah's bedroom. She now has lots of cute clothes and lots of blankets, toys, and bath supplies.
Tomorrow is another big day for Farrah. She will be having the lumbar puncture that I referred to a week or two ago. The infectious disease specialist who is overseeing her case recommended the lumbar puncture so they can be absolutely sure that there is no questionable signs of infection in Farrah's spinal fluid. We pray that it all goes smoothly and that the morphine will help Farrah tolerate the procedure well. She will also be having another head ultrasound to see if anything has changed after being so sick. The nurse practioner described everything as thoroughly looking at Farrah - head to toe.
The next step is to get Farrah on a fortifier. I learned today that Farrah is only in the third percentile in terms of growth, so I can now see why the doctors are pushing to add fortifier to her full feed feedings. We are hoping that we can try a new fortifier that is liquid, not powder, and that Farrah's tummy can handle it. If she cannot handle it, they will stop all feedings and go back to IV nutrition to give her tummy some time to recover. As of Monday, she weighs 3 pounds, 13 ounces.
In the words of one of Farrah's nurses's "Farrah still has a long way to go." Our energy is waning. Ray is gone for 10-12 hour stretches at his job and I am working my tail off at my job. We are both so tired at the end of the day and are lucky if we can get groceries purchased and laundry done in a week.
The baby shower this weekend was so much fun! It meant a lot to me that my grandmother, mother, and mother-in-law all made the trip to AZ to be there for the shower. Our local friends have been so supportive of us, and it was so nice to have many of them at the shower. Afterwards, my mother in law and I started to organize Farrah's bedroom. She now has lots of cute clothes and lots of blankets, toys, and bath supplies.
Friday, August 24, 2012
Full feeds
Farrah is now on full feeds! We thought that she was getting her ccs of breast milk every four hours, but we misunderstood. She is actually getting 8 ccs of breast milk every hour, which makes her on full feeds! They are planning to stop the iv nutrition if she continues to handle her feeds ok. Then they will be able to remove her PICC line. We've heard that you know your baby is getting closer to going home as the numbers of their wires and tubes go down. Farrah still has a ways to go, but a step like this is a great one.
Some of you have commented that Farrah looks like she is getting bigger. She sure is! Ray and I can't believe how much she has grown. She fills out more of her incubator and we need to look back at old photos to remember just how small she was at birth.
There is some talk of Farrah getting to go back on a regular vent soon, but it is all up to Farrah. Her oxygen saturation rate still goes up and down during the day, but today she was able to stay at under 60% oxygen. The further away from 100%, the better. It seems like she needs more oxygen support at night after she has been weighed and turned. Last night and tonight, Farrah was wide awake during her 8 pm rounds. She still needs to be sedated sometimes to help her rest while the oscillator does its job.
Last night, Farrah was able to meet her great-grandmother on my side and see her grandma (my mom) again. They were able to see Farrah look around and kick her feet. We took a four generations of women photo, but it is on my mom's camera and has not been uploaded yet. Farrah's other grandma (Ray's mom) will be in town this weekend too. She hasn't seen Farrah since the week after she was born. Then her uncle Connor will meet her for the first time and her grandpa (my dad) will get to see her for the first time since the week of her birth. Everyone is so excited to see our little Farrah! She is hard to resist - even the nurses say so.
Some of you have commented that Farrah looks like she is getting bigger. She sure is! Ray and I can't believe how much she has grown. She fills out more of her incubator and we need to look back at old photos to remember just how small she was at birth.
There is some talk of Farrah getting to go back on a regular vent soon, but it is all up to Farrah. Her oxygen saturation rate still goes up and down during the day, but today she was able to stay at under 60% oxygen. The further away from 100%, the better. It seems like she needs more oxygen support at night after she has been weighed and turned. Last night and tonight, Farrah was wide awake during her 8 pm rounds. She still needs to be sedated sometimes to help her rest while the oscillator does its job.
Last night, Farrah was able to meet her great-grandmother on my side and see her grandma (my mom) again. They were able to see Farrah look around and kick her feet. We took a four generations of women photo, but it is on my mom's camera and has not been uploaded yet. Farrah's other grandma (Ray's mom) will be in town this weekend too. She hasn't seen Farrah since the week after she was born. Then her uncle Connor will meet her for the first time and her grandpa (my dad) will get to see her for the first time since the week of her birth. Everyone is so excited to see our little Farrah! She is hard to resist - even the nurses say so.
Wednesday night (8/22) - Arms swaddled so she would not pull her breathing tube out.
Farrah hated having her arms so restricted.
Tonight (8/23) after her 8 pm rounds, Farrah needed a little coaxing to go
back to sleep. Her pacifier seemed to do the trick as she drifted off to sleep staring at
the top of her incubator.
Tuesday, August 21, 2012
Our Little Fighter
Farrah's little lungs took quite a hit from the MRSA and pnuemonia, so we had some good days followed by some not as good days in terms of her breathing and oxygen support. Rather than give a play-by-play all of the news we receive each day (both good and not so good), just trust me when I say that I am getting more gray hairs through all of this. Farrah's lungs have been working so hard, and over the weekend she started to need a little more oxygen support than she had needed. One of the things they do to make the oscillator work as good as possible is to sedate Farrah. She is receiving fairly regular doses of different sedation meds so that she does not breathe over the vent. It is hard seeing her non-responsive at times, but her vitals remain good and it is helping her lungs to get stronger to keep her from expelling any extra energy. Bless her heart - she sometimes tries to open to her eyes when we are there even when sedated. Other times, she does not need to be sedated and is alert and active and her oxygen levels are fine. The best explanations for all the ups and downs with her lungs is Farrah's prematurity combined with the nasty infection she had.
Some good news is that she has been going up on her feeds and is now receiving 6 ccs of breast milk. She is definitely getting bigger and it is not all fluid. She is now 15 inches long and her head circumference has grown quite a bit (just as they like to see).
Tomorrow Farrah has another eye exam. They plan to sedate her before it so she does not get as worked up this time. Hopefully it will go very smoothly. They will continue to do follow up eye exams every two weeks.
Farrah is still fighting away and we love her so much and are so proud of her. I tell her every day how many people out there love her and are praying for her. We know that she has guardian angels watching over her and angels here on earth taking care of her.
Our families are coming out this week and weekend for a baby shower. We are looking forward to seeing all of them and celebrating the most important person in this equation - Farrah. In addition to taking things one day at a time, we are all letting go and letting God.
Thank you all so, so much for your continued prayers and good thoughts, emails, phone calls, texts, cards, and gifts for Farrah. It is so encouraging for us to know that many people are walking right along side us as Farrah continues to fight.
Some good news is that she has been going up on her feeds and is now receiving 6 ccs of breast milk. She is definitely getting bigger and it is not all fluid. She is now 15 inches long and her head circumference has grown quite a bit (just as they like to see).
Tomorrow Farrah has another eye exam. They plan to sedate her before it so she does not get as worked up this time. Hopefully it will go very smoothly. They will continue to do follow up eye exams every two weeks.
Farrah is still fighting away and we love her so much and are so proud of her. I tell her every day how many people out there love her and are praying for her. We know that she has guardian angels watching over her and angels here on earth taking care of her.
Our families are coming out this week and weekend for a baby shower. We are looking forward to seeing all of them and celebrating the most important person in this equation - Farrah. In addition to taking things one day at a time, we are all letting go and letting God.
Thank you all so, so much for your continued prayers and good thoughts, emails, phone calls, texts, cards, and gifts for Farrah. It is so encouraging for us to know that many people are walking right along side us as Farrah continues to fight.
Sunday, August 19, 2012
Saturday update
I'm going to give a warning that the blog posts may not be as regular or lengthly once I go back to work this week.
Farrah did not need any sedation meds today and mainly slept through the day, according to her day nurse. When I arrived at 7 pm, Farrah opened her eyes and looked right at me. After that, she stayed awake until her rounds were over. She seemed to be fighting going back to sleep, so I held her pacifier in her mouth for a minute and then she started to doze off. That pacifier definitely comforts her. Farrah also had hiccups again at the end of her diaper change. She looks less puffy each day, which means that all the extra fluid is getting out of her. When I left her tonight, her night nurse had her lying on her tummy, which is one of her favorite positions. Hopefully they will have an eventful night. I usually call the NICU before going to sleep to see if there are any updates. The NICU also gets a call from me right when we wake up.
Farrah did not need any sedation meds today and mainly slept through the day, according to her day nurse. When I arrived at 7 pm, Farrah opened her eyes and looked right at me. After that, she stayed awake until her rounds were over. She seemed to be fighting going back to sleep, so I held her pacifier in her mouth for a minute and then she started to doze off. That pacifier definitely comforts her. Farrah also had hiccups again at the end of her diaper change. She looks less puffy each day, which means that all the extra fluid is getting out of her. When I left her tonight, her night nurse had her lying on her tummy, which is one of her favorite positions. Hopefully they will have an eventful night. I usually call the NICU before going to sleep to see if there are any updates. The NICU also gets a call from me right when we wake up.
Friday, August 17, 2012
Slow and Steady Plus a New Photo
The diueretics are working, as Farrah went down another ounce tonight. Her weight today is 3 pounds, 7 ounces. This still includes extra fluid, so we are not sure what her dry weight is. We are wondering if she will be over the 3 pound mark once all the fluid is gone. She certainly looks bigger to us. Eventually, we will go back to hoping for weight gain, but only once it is solid weight gain and not all the extra fluid.
Farrah's feeds are now up to 3 ccs every 4 hours. She is tolerating her feeds well and we are so happy with each additional cc she is getting. She is still on the oscillator, but her recent blood gas labs have looked good. Her chest x-ray from last night also looked good. We are not sure how long they will keep her on the oscillator, but it is nice to see her looking more comfortable. During Farrah's rounds at 8:00 pm tonight, she was active and kept her eyes open for quite some time. While chatting with Farrah's night nurse this evening I learned that she had been employee of the month in the past. These NICU nurses are incredible I tell you.
I took the photo below tonight after watching Farrah close her eyes to go to sleep once her rounds were done. I started talking to her to say goodnight and then she looked up at me. We made eye contact and she held her gaze for a few seconds, and I was able to capture that wonderful moment on camera.
Farrah's feeds are now up to 3 ccs every 4 hours. She is tolerating her feeds well and we are so happy with each additional cc she is getting. She is still on the oscillator, but her recent blood gas labs have looked good. Her chest x-ray from last night also looked good. We are not sure how long they will keep her on the oscillator, but it is nice to see her looking more comfortable. During Farrah's rounds at 8:00 pm tonight, she was active and kept her eyes open for quite some time. While chatting with Farrah's night nurse this evening I learned that she had been employee of the month in the past. These NICU nurses are incredible I tell you.
I took the photo below tonight after watching Farrah close her eyes to go to sleep once her rounds were done. I started talking to her to say goodnight and then she looked up at me. We made eye contact and she held her gaze for a few seconds, and I was able to capture that wonderful moment on camera.
Thursday, August 16, 2012
Back to Work
Farrah has had a quiet day. They were able to wean a little on her oscillator vent settings, and she appears less puffy. As of this morning, the culture the drew last night does not show any signs of growth. At midnight this morning, Farrah had a weight gain of over 100 grams, but they think that is due to the transfusion. The doctors don't want to see much weight gain for Farrah right now since she still has so much extra fluid on her. Farrah opened her eyes during her rounds today. Her day nurse, Karen, said that she would be happy to be another one of Farrah's primary nurses. Karen also lives in the same area of Phoenix where we live, and the two of us enjoy chatting. One of the things that helps me be comfortable with not being with Farrah all the time is the fact that she has wonderful primary nurses overseeing her care.
My case wasn't strong enough to continue my disability leave another 2 weeks, so I am headed back to work on Monday. Unfortunately, having a preemie in the NICU does not qualify a working mother for any type of leave by itself. I can't say that I am quite ready for it and have fears about how well I will be able to perform back at work. It will be hard not to call the NICU and check in on Farrah after each of her rounds. This weekend will be a time for me to get my head around it and prepare - buy some work clothes that actually fit, plan how to transport pump and keep bottles cool, come up with a schedule that allows me to get everything done that needs to get done, etc. However, I knew that I had to go back at some point and the day is here. The HR Director told me that they all understand how difficult this circumstance must be for us, and they want to be as accomodating as possible. She even said that my director would like me to be able to take unpaid leave once Farrah comes home. What a relief! We weren't sure if I would be granted any time off due to not working continuously for 12 months. There are other mothers in my company who have requested a pumping room, so they are designating one of the empty offices as the pumping room for our building.
We would appreciate prayers for strength as I prepare for the next part of our new normal. Ray and I will be seeing each other a lot less. Ray started a job at a car dealership and has been working long hours every day. It is also going to be hard to be away from Farrah for so long every day. Most likely, I will visit Farrah before or after work in the beginning, and once Farrah is able to be held again (not holding her is so hard) and can start to be bottle fed, we will work more visits into our schedules. Hopefully my work will allow me to work from home at least sometimes (like I did before). It would certainly make things a bit easier. We just keep reminding ourselves that all of this is our new normal FOR NOW. Someday soon, we will get to bring Farrah home.
My case wasn't strong enough to continue my disability leave another 2 weeks, so I am headed back to work on Monday. Unfortunately, having a preemie in the NICU does not qualify a working mother for any type of leave by itself. I can't say that I am quite ready for it and have fears about how well I will be able to perform back at work. It will be hard not to call the NICU and check in on Farrah after each of her rounds. This weekend will be a time for me to get my head around it and prepare - buy some work clothes that actually fit, plan how to transport pump and keep bottles cool, come up with a schedule that allows me to get everything done that needs to get done, etc. However, I knew that I had to go back at some point and the day is here. The HR Director told me that they all understand how difficult this circumstance must be for us, and they want to be as accomodating as possible. She even said that my director would like me to be able to take unpaid leave once Farrah comes home. What a relief! We weren't sure if I would be granted any time off due to not working continuously for 12 months. There are other mothers in my company who have requested a pumping room, so they are designating one of the empty offices as the pumping room for our building.
We would appreciate prayers for strength as I prepare for the next part of our new normal. Ray and I will be seeing each other a lot less. Ray started a job at a car dealership and has been working long hours every day. It is also going to be hard to be away from Farrah for so long every day. Most likely, I will visit Farrah before or after work in the beginning, and once Farrah is able to be held again (not holding her is so hard) and can start to be bottle fed, we will work more visits into our schedules. Hopefully my work will allow me to work from home at least sometimes (like I did before). It would certainly make things a bit easier. We just keep reminding ourselves that all of this is our new normal FOR NOW. Someday soon, we will get to bring Farrah home.
Wednesday, August 15, 2012
Back on the Oscillator
Ray and I received a call at 4:00 am from one of the doctors who said that they were moving Farrah back to the oscillator vent. The doctor quickly added that Farrah is stable and just needs the extra support right now and they do not want to keep going up on her oxygen on the regular vent. The change was for Farrah's safety. Even though the oscillator jiggles Farrah, when I saw her today, she seemed much more relaxed than she had looked the past two days on the regular vent. Upon my arrival in the NICU this morning, one of the neonatologist's, "Rusty", checked in with me and let me know that he would be overseeing Farrah's care today. He then showed me the last several x-rays of Farrah's lungs that led them to make the change to her oxygen support. They started seeing more of what they call a "white out", which led them to believe that Farrah's lungs aren't quite ready for the regular vent due to after effects of the infection in her lungs. He also told me that it will take some time for Farrah to get to where she needs to go, but he reminded me that she will get there. Ray and I just need to continue to be patient as Farrah gets the treatment that she needs, and she will meet all the NICU milestones that she needs to meet on her own timing. It was very easy to speak with Rusty about all that is going on with Farrah, and I feel confident that we can turn to Rusty in the future if we have any questions or concerns about Farrah's care. For those who have asked, there is currently no expected date when Farrah should be able to go home; we will have to wait and see.
Since Farrah is back on the oscillator, the lumbar puncture is on hold for now. In the mean time, they drew a bit more blood for another blood culture to ensure that there still is no growth in Farrah's blood. She currently has a PICC line in, and they also put in an ART line this morning. These are in addition to Farrah's regular IV. They did not need to give Farrah any anti-anxiety meds since they moved her to the oscillator. I'm taking this as a sign that she is relieved to not have to work as hard, and now she is able to sleep away without any signs of agitation.
Farrah received another transfusion this afternoon. She is up to 4 units of blood now. We are so very thankful for all of the blood donors who roll up their sleeves time and time again and give blood. We are particularly thankful for United Blood Services blood that Farrah is receiving. If today's transfusion is not her last, that is ok by us. They are drawing a lot of Farrah's blood to test for everything and her body is not replenishing the supply quickly enough. Farrah needs the blood, and the blood is there, thanks to blood donors. If you are eligible, please think about donating blood soon.
Farrah lost 100 grams, which is probably all fluid. We are happy to see that the diuretics are continuing to help get all the extra fluid off Farrah's body. I have posted some photos below that have already been on facebook.
Since Farrah is back on the oscillator, the lumbar puncture is on hold for now. In the mean time, they drew a bit more blood for another blood culture to ensure that there still is no growth in Farrah's blood. She currently has a PICC line in, and they also put in an ART line this morning. These are in addition to Farrah's regular IV. They did not need to give Farrah any anti-anxiety meds since they moved her to the oscillator. I'm taking this as a sign that she is relieved to not have to work as hard, and now she is able to sleep away without any signs of agitation.
Farrah received another transfusion this afternoon. She is up to 4 units of blood now. We are so very thankful for all of the blood donors who roll up their sleeves time and time again and give blood. We are particularly thankful for United Blood Services blood that Farrah is receiving. If today's transfusion is not her last, that is ok by us. They are drawing a lot of Farrah's blood to test for everything and her body is not replenishing the supply quickly enough. Farrah needs the blood, and the blood is there, thanks to blood donors. If you are eligible, please think about donating blood soon.
Farrah lost 100 grams, which is probably all fluid. We are happy to see that the diuretics are continuing to help get all the extra fluid off Farrah's body. I have posted some photos below that have already been on facebook.
Moving Along
Farrah got a new PICC line in the early hours of Tuesday morning. They were able to get the PICC line in without any trouble, so we are thankful for that. Ray and I headed over to the hospital around 11 am today and Ray had a chance to change Farrah's diaper, take her temperature, and wipe her eyes and mouth. She did not open her eyes while he was there, but the lights in her new room are pretty bright because she is the closest bed to the hall with the big, bright lights. Later today, I asked Farrah's nurse if there was a way to block some of the light coming in from the hallway, such as putting a screen or blanket in the doorway. The nurse asked her manager if that would be ok, and we got approval to put up a blanket to block the light coming in. Farrah's bed is a lot darker now, which is what she prefers. I even saw her open her eyes a little once this change was made.
In terms of feeds, Farrah has been able to tolerate her feeds thus far. Farrah is still quite puffy from the edema, and they have switched her diueretic to more of a maintenance med. Tonight Farrah's weight went down by more than 100 grams, which is great when the goal is to get the extra fluid off ASAP.
Ray and I went over to the Women's Health department to pick up some of my medical records to pass along to the disability company. I have been getting a little push back with extending my short term disability and the current approved dates only cover until this Thursday. My physician signed off on 6 weeks of recovery after my c section, and I would really like to take an additional 2 weeks since a typically c section recovery takes around 8 weeks without any other complications. Hopefully the disability company will review my medical records and realize that pre-existing hypertension, kidney disease, superimposed pre-eclampsia, and 3 weeks of hospital bed rest is enough to extend my leave just a little longer as my body continues to heal. It is inevitable that I will be going back to work soon, and I am so thankful for the time I have now to be at the hospital all day with Farrah as she gets over this hurdle.
During Farrah's afternoon rounds, a physical therapist stopped by. We were told early on that physical therapists and occupational therapists work with the babies starting with their first week or two in the NICU, but up until now, we had not met any of the therapists. The therapists move the babies into the positions that will support calming and limit stress signs. Today's therapist walked me through what they are currently working on with Farrah. They want her to keep her hands by her face whenever possible, and they make sure that the babies have boundaries in their beds just like they would still have inside their moms. Farrah exhibits many of the habits that they want the babies to develop from an early age, but she still shows the stress signs that alert us that she is not happy about something. The therapist also gave me a packet of materials for future reference about milestones for babies when they leave the NICU and how to look at the milestones in terms of a preemie's adjusted age.
Farrah's primary night nurse, Sherri, wanted me to understand just how hard Farrah's lungs were hit with the combination of pnuemonia and MRSA. She explains this simply by saying "She has a long way to go, Mom." The NICU nurses often refer to all of us as Mom and Dad and not our first names. I was saying to her that as soon as Farrah gets all the excess fluid off she should be able to start breathing a lot easier. She did not want to mislead me by agreeing with my thought process and just reiterated that getting sick has really knocked Farrah down and it will take a while for her to get back up to where she was before getting sick. MRSA is a big complication and it has added another element of the unknown into the mix. We cannot sit and wonder what is going to happen. We just need to stay positive and focus on Farrah who is doing better and getting stronger each day.
In terms of feeds, Farrah has been able to tolerate her feeds thus far. Farrah is still quite puffy from the edema, and they have switched her diueretic to more of a maintenance med. Tonight Farrah's weight went down by more than 100 grams, which is great when the goal is to get the extra fluid off ASAP.
Ray and I went over to the Women's Health department to pick up some of my medical records to pass along to the disability company. I have been getting a little push back with extending my short term disability and the current approved dates only cover until this Thursday. My physician signed off on 6 weeks of recovery after my c section, and I would really like to take an additional 2 weeks since a typically c section recovery takes around 8 weeks without any other complications. Hopefully the disability company will review my medical records and realize that pre-existing hypertension, kidney disease, superimposed pre-eclampsia, and 3 weeks of hospital bed rest is enough to extend my leave just a little longer as my body continues to heal. It is inevitable that I will be going back to work soon, and I am so thankful for the time I have now to be at the hospital all day with Farrah as she gets over this hurdle.
During Farrah's afternoon rounds, a physical therapist stopped by. We were told early on that physical therapists and occupational therapists work with the babies starting with their first week or two in the NICU, but up until now, we had not met any of the therapists. The therapists move the babies into the positions that will support calming and limit stress signs. Today's therapist walked me through what they are currently working on with Farrah. They want her to keep her hands by her face whenever possible, and they make sure that the babies have boundaries in their beds just like they would still have inside their moms. Farrah exhibits many of the habits that they want the babies to develop from an early age, but she still shows the stress signs that alert us that she is not happy about something. The therapist also gave me a packet of materials for future reference about milestones for babies when they leave the NICU and how to look at the milestones in terms of a preemie's adjusted age.
Farrah's primary night nurse, Sherri, wanted me to understand just how hard Farrah's lungs were hit with the combination of pnuemonia and MRSA. She explains this simply by saying "She has a long way to go, Mom." The NICU nurses often refer to all of us as Mom and Dad and not our first names. I was saying to her that as soon as Farrah gets all the excess fluid off she should be able to start breathing a lot easier. She did not want to mislead me by agreeing with my thought process and just reiterated that getting sick has really knocked Farrah down and it will take a while for her to get back up to where she was before getting sick. MRSA is a big complication and it has added another element of the unknown into the mix. We cannot sit and wonder what is going to happen. We just need to stay positive and focus on Farrah who is doing better and getting stronger each day.
Monday, August 13, 2012
Weaning oxygen support
Farrah has been showing good signs of improvement and her 72 hour blood cultures came back as having no growth, so the decision was made to change her over to a regular vent instead of the oscillating vent she has been on since she got sick. They switched Farrah over to the vent this afternoon after moving her and the other MRSA babies to a more closed off area in the NICU. Farrah has to work a little harder on the regular vent, so they have needed to give her more support to tolerate the change. Before her rounds at 4 pm today, Farrah kept desatting whenever her nurse Margaret weaned on her settings. After we repositioned her and changed her diaper, she appeared more relaxed. As Farrah was falling asleep, Margaret combed her hair and we think Farrah liked it. It looks like we have a girly girl on our hands.
They are talking about putting a new PICC line in soon and hope to do the lumbar puncture in the next day or two. Farrah's swelling is slowly going down too. They started back on her feeds last night with 1 cc of breast milk and will increase the amount every 12 hours. Hopefully Farrah will tolerate going back on feeds through her feeding tube.
I am here at the hospital with Farrah and will be here through the evening. We are so thankful for all of your prayers, good thoughts, and love. I tell Farrah every day just how many people love her.
They are talking about putting a new PICC line in soon and hope to do the lumbar puncture in the next day or two. Farrah's swelling is slowly going down too. They started back on her feeds last night with 1 cc of breast milk and will increase the amount every 12 hours. Hopefully Farrah will tolerate going back on feeds through her feeding tube.
I am here at the hospital with Farrah and will be here through the evening. We are so thankful for all of your prayers, good thoughts, and love. I tell Farrah every day just how many people love her.
Sunday, August 12, 2012
More Improvement
Farrah had a good day on Saturday. It was quiet with no procedures, so all she had to do was rest. Farrah still has quite a bit of fluid retention, but the lasix seems to be working. Saturday's nurse practioner, Renee, checked in with me and said that she was saddened to see Farrah so sick earlier in the week. Renee said that Farrah seems to be doing much better and shared with me that they are going to slowly wean her rather than push her on the vent settings. They are going to hold off on the lumbar puncture until Farrah's oxygen dependency drops a bit and they feel that Farrah is a bit more stable. While I was there on Saturday afternoon into the evening, I sat at Farrah's bedside and reached my hands into her incubator. She likes to keep her hands by her head, and she spent hours gripping my finger with her tiny hand. While she did this, her oxygen levels were great. She knows that I am there and hopefully finds it comforting and relaxing. While I was at the hospital, Ray was busy working away on the house. We'll go see Farrah together later today (Sunday).
Farrah's night nurse admitted her back in July, and I asked her if she would be Farrah's weekend night primary nurse. Her name is Lisa, and I find her to be very attentive and experienced. Twice a month she is assigned to be the charge nurse for the NICU, so even though she won't directly watch over Farrah on those nights, she will be overseeing the entire NICU and all the nurses.
Farrah's night nurse admitted her back in July, and I asked her if she would be Farrah's weekend night primary nurse. Her name is Lisa, and I find her to be very attentive and experienced. Twice a month she is assigned to be the charge nurse for the NICU, so even though she won't directly watch over Farrah on those nights, she will be overseeing the entire NICU and all the nurses.
Saturday, August 11, 2012
Looking at the Positives
We are seeing a few more encouraging signs as Farrah continues to fight. Her nurses tell us that while she is still critical, she is stable. The doctors and nurses look at Farrah's behavior as a big indicator of how she is feeling and how to assess the current situation. Yesterday while I was there during the daytime, Farrah opened her eyes during two of her afternoon rounds. That is, once we shut off the lights. Our little girl clearly thinks the lights above her bed are way too bright. Farrah's day nurse, Margaret, and I noticed that Farrah was sucking on the styrofoam board that is on her arm so she won't pull out her IV. We tried putting a pacifier in her mouth so she would suck on that instead of the styrofoam. Pretty soon after we did that, Farrah was sucking away on her pacifier and finally fell back asleep. She also pooped during the daytime for me as well as the night time when Ray was there changing her diaper. Peeing and pooping is a good sign that her body is still doing what it needs to do. Because of the blood infection, Farrah has quite a bit of fluid retention right now. She is receiving more lasix to help her get rid of the extra fluid. When weighed last night, Farrah was over the 3-pound mark, but there is so much fluid in her body that we cannot be sure of her actual weight. In terms of defining exactly what is happening, we have been told that Farrah has sepsis in addition to pneumonia. This is a very serious condition for babies, as well as adults. There are certain complications that oftentimes come along with sepsis that we have not seen in Farrah, and yesterday's nurses said that we should consider that a very good sign and be encouraged by that. They also want to start up again on Farrah's feedings soon, which is another good sign.
We signed a consent for Farrah to have a lumbar puncture today because with sepsis, they need to check her spinal fluid to see if she also has meningitis. We hope and pray that she does not have it. If she does, they will give her a longer dose of antibiotics. I am reminded of a gal from high school who had meningitis and who got better. They will give Farrah morphine through her IV before the procedure so she won't feel a thing, and we have been assured that the physicians and nurse practitioners have lots and lots of experience performing the LPs. I requested that no resident perform the LP on Farrah, and our primary nurse practitioner told me that no residents are overseeing Farrah's care right now. I believe strongly in a teaching hospital setting and know that residents need lots of hands-on training. However, Farrah needs to be treated by the best of the best in her current state and we will accept nothing less. I am getting to know the NICU staff better as I spend more time there. I remember how sick I was 10 years ago - how I had a similiar type of fluid retention, how I had setbacks in the hospital, and most importantly, how I got better.
So...how are we doing with all this? Honestly, on Wednesday, I lost it. My mind went to places that I wish it didn't go to and I was a wreck. By Thursday, I felt better about things because Farrah showed me that she was doing better. I also could start to see the positives in the current situation, and I believe that all the prayers and good thoughts from everyone are lifting us up. Ray was strong on Wednesday and Thursday, but yesterday was a hard day for him. After googling Farrah's current diagnoses (which is a very dangerous thing to do), Ray reached a place where I was on Wednesday. Please pray for him right now. He is still wrestling with the "why" questions and trying to make sense of all the recent setbacks after a relatively smooth path for Farrah's first month. We both need strength to keep on keeping on because Farrah needs us to be strong. Farrah needs us to be her advocate. Farrah needs us to keep looking past all the tubes and the cords and to show up and let her know that we are there with her, rooting her on, passing on all the positive thoughts and all the prayers and love from everyone who is wishing her well. We are leaning on each other and God and appreciate all the love and support from all of you. We are also moving forward towards the outcome that we want. Farrah's nursery furniture was delivered yesterday and Ray spent the afternoon putting everything together. We will continue to get her nursery ready for when she comes home.
We signed a consent for Farrah to have a lumbar puncture today because with sepsis, they need to check her spinal fluid to see if she also has meningitis. We hope and pray that she does not have it. If she does, they will give her a longer dose of antibiotics. I am reminded of a gal from high school who had meningitis and who got better. They will give Farrah morphine through her IV before the procedure so she won't feel a thing, and we have been assured that the physicians and nurse practitioners have lots and lots of experience performing the LPs. I requested that no resident perform the LP on Farrah, and our primary nurse practitioner told me that no residents are overseeing Farrah's care right now. I believe strongly in a teaching hospital setting and know that residents need lots of hands-on training. However, Farrah needs to be treated by the best of the best in her current state and we will accept nothing less. I am getting to know the NICU staff better as I spend more time there. I remember how sick I was 10 years ago - how I had a similiar type of fluid retention, how I had setbacks in the hospital, and most importantly, how I got better.
So...how are we doing with all this? Honestly, on Wednesday, I lost it. My mind went to places that I wish it didn't go to and I was a wreck. By Thursday, I felt better about things because Farrah showed me that she was doing better. I also could start to see the positives in the current situation, and I believe that all the prayers and good thoughts from everyone are lifting us up. Ray was strong on Wednesday and Thursday, but yesterday was a hard day for him. After googling Farrah's current diagnoses (which is a very dangerous thing to do), Ray reached a place where I was on Wednesday. Please pray for him right now. He is still wrestling with the "why" questions and trying to make sense of all the recent setbacks after a relatively smooth path for Farrah's first month. We both need strength to keep on keeping on because Farrah needs us to be strong. Farrah needs us to be her advocate. Farrah needs us to keep looking past all the tubes and the cords and to show up and let her know that we are there with her, rooting her on, passing on all the positive thoughts and all the prayers and love from everyone who is wishing her well. We are leaning on each other and God and appreciate all the love and support from all of you. We are also moving forward towards the outcome that we want. Farrah's nursery furniture was delivered yesterday and Ray spent the afternoon putting everything together. We will continue to get her nursery ready for when she comes home.
Thursday, August 9, 2012
A Better Day Than Yesterday
Farrah seems to be doing much better today than yesterday. It was so hard for us to see her lying there and not moving yesterday. She just looked so sick. Today was a different story. I (Meghan) spent the day at the hospital at Farrah's bedside. You just can't keep a mamma bear away from her cub. :)
Even when sedated, Farrah was moving her arms and legs like we are used to seeing. She was also sticking her tongue out and sucking on her breathing tube - all good signs that she is more alert and feeling better today. I was able to help the nurse with two of Farrah's rounds by changing her diaper, taking her temperature, and wiping her eyes and mouth. After that, I rested my hands on Farrah and talked to her for hours today. She squeezed my finger and seemed to know that I was there with her. I went home from the hospital completely wiped out and took a long nap. We hope and pray that yesterday was the worst of it. They confimed that Farrah has some type of infection in her blood as well as her lungs, and she is receiving three different antibiotics. Her breathing tube sample tested positive for MRSA, a "staph" infection that colonizes and is hard to treat with certain antibiotics. We are still learning what the MRSA diagnosis means and what implications it will have for Farrah. It is especially dangerous when preemies get it since they have no immunity. Her doctors plan on doing a lumbar puncture later this week to see if Farrah has any other complications from the infection.
It was such a relief to see Farrah moving around more, which I take as her telling me that everything will be ok. We've got to continue to be strong for Farrah's sake and for ours.
Even when sedated, Farrah was moving her arms and legs like we are used to seeing. She was also sticking her tongue out and sucking on her breathing tube - all good signs that she is more alert and feeling better today. I was able to help the nurse with two of Farrah's rounds by changing her diaper, taking her temperature, and wiping her eyes and mouth. After that, I rested my hands on Farrah and talked to her for hours today. She squeezed my finger and seemed to know that I was there with her. I went home from the hospital completely wiped out and took a long nap. We hope and pray that yesterday was the worst of it. They confimed that Farrah has some type of infection in her blood as well as her lungs, and she is receiving three different antibiotics. Her breathing tube sample tested positive for MRSA, a "staph" infection that colonizes and is hard to treat with certain antibiotics. We are still learning what the MRSA diagnosis means and what implications it will have for Farrah. It is especially dangerous when preemies get it since they have no immunity. Her doctors plan on doing a lumbar puncture later this week to see if Farrah has any other complications from the infection.
It was such a relief to see Farrah moving around more, which I take as her telling me that everything will be ok. We've got to continue to be strong for Farrah's sake and for ours.
Wednesday, August 8, 2012
Infection update
We spoke to one of the NICU doctor's tonight and he confirmed that Farrah has pneumonia and sepsis in her lungs. Farrah is currently being sedated so that she can rest and let the ventilator and medicine do their jobs. The culture results will tell us if the sepsis is also in her blood stream. We pray that this is not the case.
This is so scary for us, and all we can do is trust that Farrah will continue to fight as she has been doing her whole life. It was good to see our daughter tonight even if we had to put on gowns and gloves to be by her bedside. They are providing excellent care to her and are watching over everything so carefully.
We strongly believe in the power of prayer and request your continued good thoughts, prayers, and well wishes for our baby girl. In Farrah's nurse's words to us tonight "we're still in the danger zone." This is such a change from how she was doing less than 48 hours ago.
This is so scary for us, and all we can do is trust that Farrah will continue to fight as she has been doing her whole life. It was good to see our daughter tonight even if we had to put on gowns and gloves to be by her bedside. They are providing excellent care to her and are watching over everything so carefully.
We strongly believe in the power of prayer and request your continued good thoughts, prayers, and well wishes for our baby girl. In Farrah's nurse's words to us tonight "we're still in the danger zone." This is such a change from how she was doing less than 48 hours ago.
Infection
We've been told that things can change quickly in the NICU and just had our first real experience with this. It turns out that Farrah was not only just upset due to her eye exam, but she has an infection in her lungs. They also suspect that she has pneumonia after doing a chest x-ray this morning. She will start getting antibiotics to treat the infection and they are also holding her feeds. They are worried about her tummy again too, which is the reason why they are holding her feeds. She will continue to get IV nutrition and lipids while they hold her feeds. She weighed 2 pounds, 14 ounces this morning but they gave her lasix to pull off any extra fluid since she appeared more puffy. Her nurse Sherri could see a difference in Farrah's behavior and alerted the day shift staff of her observations. It looks like the infection was caught very early thanks to her watchful eye. We plan on going over to the hospital tonight to check in with Sherri and visit with Farrah.
The cultures from earlier in the week came back negative, but they drew more blood for cultures and should have the results by Saturday. This will let us know if the infection is more severe, which we are praying is not the case.
Prayers are greatly appreciated right now. Ray and I are trying to stay positive but this is concerning and scary for us, as we were informed of all the possible complications that could arise.
The cultures from earlier in the week came back negative, but they drew more blood for cultures and should have the results by Saturday. This will let us know if the infection is more severe, which we are praying is not the case.
Prayers are greatly appreciated right now. Ray and I are trying to stay positive but this is concerning and scary for us, as we were informed of all the possible complications that could arise.
Tuesday, August 7, 2012
Results
Earlier in the day, we found out from Farrah's day nurse that her head ultrasound was normal. Her brain development is also right on target for her age. Yay! Her day nurse told us that they were going to do the eye exam today instead of tomorrow due to the doctor's schedule.
We went over to the hospital this evening and had not heard anything else about the eye exam. When we arrived, Farrah's night nurse, her primary night nurse Sherri, told us that Farrah hated the eye exam and fought against them the entire time. The excitement of it all completely wiped Farrah out. Sherri warned us that Farrah's color was a little different tonight because of how much fighting the eye exam took out of her. Her face was very pale when we saw her. When preemies get worked up and wiped out, it tends to effect their color (just like it did to Farrah). It was hard to hear how much Farrah did not like the exam. I can see how it is tough for parents to watch their kids get shots or go through any type of painful procedure. The good news is that this eye exam did not show any problems. They will continue to do the eye exam every two weeks, and Farrah will most likely react the same way. Hopefully she will be feeling better tomorrow.
We went over to the hospital this evening and had not heard anything else about the eye exam. When we arrived, Farrah's night nurse, her primary night nurse Sherri, told us that Farrah hated the eye exam and fought against them the entire time. The excitement of it all completely wiped Farrah out. Sherri warned us that Farrah's color was a little different tonight because of how much fighting the eye exam took out of her. Her face was very pale when we saw her. When preemies get worked up and wiped out, it tends to effect their color (just like it did to Farrah). It was hard to hear how much Farrah did not like the exam. I can see how it is tough for parents to watch their kids get shots or go through any type of painful procedure. The good news is that this eye exam did not show any problems. They will continue to do the eye exam every two weeks, and Farrah will most likely react the same way. Hopefully she will be feeling better tomorrow.
One Month
Yesterday marked Farrah's one month birthday! We visited her in the afternoon and reflected back on how far she has come already. Her feeds are going up, and right now the plan is to get her up to full feeds on straight breast milk before trying another fortifier. It looks like she is doing ok with her weight gain. I had mentioned in my previous post that they suspected she was retaining extra fluid, but they did not end up giving her lasix and don't think that is the case for now. It looks like solid weight gain! When we look at her, we can see that her face, arms, and legs are starting to fill out. She is getting closer and closer to the three pound mark. She still has the breathing tube in, but they have been lowering her settings lately. They are holding off on putting a PICC line back in for now. She has a working IV line that is providing the extra nutrition and lipids that she needs. They may still want a PICC line in, but there is no order for that today. They did try to put a PICC line in two days ago, but the procedure was not successful due to hitting a valve. That same thing happened to me when my nurse attempted a new IV in my arm.
Farrah had a 30 day head ultrasound this morning and we are waiting to hear the results of that. She does not have any symptoms to indicate any problems, and the ultrasound is strictly protocol. Tomorrow, she has her first eye exam. Preemies sometimes have a condition called retinopathy of prematurity (ROP) that many of them grow out of. The eye exam is to see if Farrah has any signs of it. They will keep examining her eyes throughout her NICU stay and then at doctors' appointments afterwards to see if she has ROP.
Farrah still has more hurdles to overcome before she can leave the NICU, but she is well on her way. Please keep up the cheers, good thoughts, and prayers!!!
Farrah had a 30 day head ultrasound this morning and we are waiting to hear the results of that. She does not have any symptoms to indicate any problems, and the ultrasound is strictly protocol. Tomorrow, she has her first eye exam. Preemies sometimes have a condition called retinopathy of prematurity (ROP) that many of them grow out of. The eye exam is to see if Farrah has any signs of it. They will keep examining her eyes throughout her NICU stay and then at doctors' appointments afterwards to see if she has ROP.
Farrah still has more hurdles to overcome before she can leave the NICU, but she is well on her way. Please keep up the cheers, good thoughts, and prayers!!!
Sunday, August 5, 2012
Updated Photos
Farrah had another good night. Her weight was up more than 100 grams totaling 2 pounds, 8 ounces, which makes the nurses suspicious that she is still retaining extra fluid. They will probably give her another dose of lasix to eliminate any extra fluid. We expect that her weight will drop a bit today. Her tummy has been soft and they have not have any concerns about it since she has been off all fortifiers.
They are putting another PICC line back in today, so please pray that it will go smoothly for Farrah. It serves as a more permanent IV line. There are no other orders for today. They are going to try to go up on Farrah's feeds again by going up one cc every 12 hours.
They have bean weaning Farrah's oxygen support on the breathing tube the last few days, so they will probably try the nasal cannula again soon. We hope and pray that her lungs will be able to handle the change and that she won't have to go back on the vent.
I've posted a few new photos below and also updated the shutterfly site with lots of photos of Farrah. She is opening her eyes more often these days, and these two photos capture that. She also still has her full head of hair.
http://farrahjoy.shutterfly.com/
They are putting another PICC line back in today, so please pray that it will go smoothly for Farrah. It serves as a more permanent IV line. There are no other orders for today. They are going to try to go up on Farrah's feeds again by going up one cc every 12 hours.
They have bean weaning Farrah's oxygen support on the breathing tube the last few days, so they will probably try the nasal cannula again soon. We hope and pray that her lungs will be able to handle the change and that she won't have to go back on the vent.
I've posted a few new photos below and also updated the shutterfly site with lots of photos of Farrah. She is opening her eyes more often these days, and these two photos capture that. She also still has her full head of hair.
http://farrahjoy.shutterfly.com/
Saturday, August 4, 2012
Lab Results Look Ok
The prelimary lab results did not show any signs of infection - her white blood cell count was not high. We are still waiting to see if the culture results show anything different. Thankfully, she does not exhibit any other signs of infection at this time.
I had an appointment near the hospital yesterday afternoon, so I stopped by the hospital afterwards to check in on Farrah. Her nurse told me that her tummy had not gone up in size and she had been resting a lot. I sat by her bedside for a while and watched all the movements she did in her sleep. She was one active baby when she was inside me, and she certainly is just as active outside. Her nurse would position her on her side and then she would wiggle herself on to her back. I observed her lifting her legs, moving her arms, and stretching - all while she slept. They continued her feeds yesterday, starting at 7 ccs every three hours. They are forgoing the fortifiers at this time and may try a different fortifier after the weekend.
Ray and I visited with Farrah this morning and we were told that she had an uneventful night. Her tummy looks better than it did before, and we are all pleased to see that. It could be that she is just gassy right now when she eats, and that is all there is to it. We got there at the tail end of her 11 am rounds and Ray was able to change her diaper. She was wide awake and had trouble going back to sleep while we were talking near her. We think that she knows when we are there and that she tries to keep herself awake since we are now so familiar to her. I am convinced that this is the case. Her nurse said that Farrah seemed to prefer lying on her tummy, so when we left she was back on her tummy sleeping away and all her numbers looked good. She is not on much oxygen support right now even though she still has the breathing tube in. She is receiving just enough to give her lungs the support they need.
Thank you for your love, good thoughts, and prayers for Farrah and for us.
I had an appointment near the hospital yesterday afternoon, so I stopped by the hospital afterwards to check in on Farrah. Her nurse told me that her tummy had not gone up in size and she had been resting a lot. I sat by her bedside for a while and watched all the movements she did in her sleep. She was one active baby when she was inside me, and she certainly is just as active outside. Her nurse would position her on her side and then she would wiggle herself on to her back. I observed her lifting her legs, moving her arms, and stretching - all while she slept. They continued her feeds yesterday, starting at 7 ccs every three hours. They are forgoing the fortifiers at this time and may try a different fortifier after the weekend.
Ray and I visited with Farrah this morning and we were told that she had an uneventful night. Her tummy looks better than it did before, and we are all pleased to see that. It could be that she is just gassy right now when she eats, and that is all there is to it. We got there at the tail end of her 11 am rounds and Ray was able to change her diaper. She was wide awake and had trouble going back to sleep while we were talking near her. We think that she knows when we are there and that she tries to keep herself awake since we are now so familiar to her. I am convinced that this is the case. Her nurse said that Farrah seemed to prefer lying on her tummy, so when we left she was back on her tummy sleeping away and all her numbers looked good. She is not on much oxygen support right now even though she still has the breathing tube in. She is receiving just enough to give her lungs the support they need.
Thank you for your love, good thoughts, and prayers for Farrah and for us.
Friday, August 3, 2012
A Round Belly Means What?
We visited with Farrah last night and Ray held her. The night before, I did kangaroo care with her. She was very relaxed while I held her, but then she was more active than she should be after being put back in her bed. It seemed like she was fighting to stay awake, and we attribute that to her hearing our voices and wanting to be a part of what was going on. As we drove home, we saw that we missed a call from the NICU. Typically, the NICU nurses don't call unless there is an emergency or a change of treatment. This time, it was Farrah's night nurse calling to let us know that Farrah calmed down and all her numbers looked great. She said that she thought it would help us go to sleep easier, and she was right.
Farrah seemed very tired yesterday and slept the entire time that Ray held her. She is doing ok with the breathing tube and is letting the machine do most of the work for her as she continues to rest. We were told that she had been having a quiet day and had been sleeping most of the day before we came in. She was peeing and pooping as she should be and was sleeping all the time. Sleep for NICU babies is critical and encouraged, so we are not concerned if she is sleeping a lot as long as her monitored numbers look good.
Last week they added a fortifier to the breast milk she receives through her feeding tube, and it appeared that she could not digest it very easily. Her belly was getting big and filled with gas. Her nurses needed to remove the extra gas to get the roundness down. It was apparent that she was not tolerating that fortifier well, so they switched her to a different one called neosure. Her weight has been fluctuating too. At one point, she was getting close to 3 pounds, then they gave her a diurectic and she went down to 2 pounds. As of last night, she weighed 2 pounds, 5 ounces. Up. Down. Up. Down. The nurses thought that she was tolerating the neosure better than the first fortifier, but early this morning Farrah's belly was very full again and when the nurse tried to examine her, Farrah was not happy about it - she did not want her tummy touched. The quick solution for a full belly is for Farrah to poop on her own. Since this had not happened during the night shift, it raised some concern. They at first made the decision to hold all her feeds for now, continue with the IV nutrition, and monitor her. We called the NICU a few hours later for another update. This time we were told that she had pooped and her belly was smaller, as they had hoped. However, they were suspicious that she may have an infection of some kind, so they drew some blood and will also do a culture. The decision was made to pull out Farrah's PICC line in case there is an infection. They put a peripheral IV in her foot, and that is where her nutrition will go as long as she is not getting any feeds. It could just be that her digestive system does not tolerate those two fortifiers right now. When they resume her feeds (hopefully this afternoon), they will hold off on the fortifier and see if there is any improvement when she goes back to straight breast milk. We are anxiously waiting to find out the results from the blood culture. They also drew blood for a CBC and will look to see if her white cell count is high, which would indicate that she probably has some type of infection. If that is the case, they will start her on IV antibiotics right away.
It also looks like she will need another blood transfusion in the next few days, as her hemoglobin is a little low again. By NICU standards, Farrah is still considered level 3 and critical. There are babies in the NICU who are much sicker than her, but her main issue is that she was 12 weeks premature and that she is little. She has a lot of catching up to do in terms of developing. Fortuantely, since her delivery, she has been doing good in the NICU. Her one month birthday is on Monday. We will celebrate it by bringing in a new balloon for her bed and I may make a sign for her bedside.
Prayer requests:
- That Farrah's lung will get strong so she can start breathing on her own
- That Farrah's doctors can figure out a good fortifier that Farrah can tolerate so she can start having much needed weight gain.
- That Farrah be protected from any infections throughout her time in the NICU.
- That the insertion of a new PICC line goes smoothly.
- That her blood transfusion (if she needs it) goes smoothly.
The photos below were also on facebook, but they are are most recent ones from the past few days.
Farrah seemed very tired yesterday and slept the entire time that Ray held her. She is doing ok with the breathing tube and is letting the machine do most of the work for her as she continues to rest. We were told that she had been having a quiet day and had been sleeping most of the day before we came in. She was peeing and pooping as she should be and was sleeping all the time. Sleep for NICU babies is critical and encouraged, so we are not concerned if she is sleeping a lot as long as her monitored numbers look good.
Last week they added a fortifier to the breast milk she receives through her feeding tube, and it appeared that she could not digest it very easily. Her belly was getting big and filled with gas. Her nurses needed to remove the extra gas to get the roundness down. It was apparent that she was not tolerating that fortifier well, so they switched her to a different one called neosure. Her weight has been fluctuating too. At one point, she was getting close to 3 pounds, then they gave her a diurectic and she went down to 2 pounds. As of last night, she weighed 2 pounds, 5 ounces. Up. Down. Up. Down. The nurses thought that she was tolerating the neosure better than the first fortifier, but early this morning Farrah's belly was very full again and when the nurse tried to examine her, Farrah was not happy about it - she did not want her tummy touched. The quick solution for a full belly is for Farrah to poop on her own. Since this had not happened during the night shift, it raised some concern. They at first made the decision to hold all her feeds for now, continue with the IV nutrition, and monitor her. We called the NICU a few hours later for another update. This time we were told that she had pooped and her belly was smaller, as they had hoped. However, they were suspicious that she may have an infection of some kind, so they drew some blood and will also do a culture. The decision was made to pull out Farrah's PICC line in case there is an infection. They put a peripheral IV in her foot, and that is where her nutrition will go as long as she is not getting any feeds. It could just be that her digestive system does not tolerate those two fortifiers right now. When they resume her feeds (hopefully this afternoon), they will hold off on the fortifier and see if there is any improvement when she goes back to straight breast milk. We are anxiously waiting to find out the results from the blood culture. They also drew blood for a CBC and will look to see if her white cell count is high, which would indicate that she probably has some type of infection. If that is the case, they will start her on IV antibiotics right away.
It also looks like she will need another blood transfusion in the next few days, as her hemoglobin is a little low again. By NICU standards, Farrah is still considered level 3 and critical. There are babies in the NICU who are much sicker than her, but her main issue is that she was 12 weeks premature and that she is little. She has a lot of catching up to do in terms of developing. Fortuantely, since her delivery, she has been doing good in the NICU. Her one month birthday is on Monday. We will celebrate it by bringing in a new balloon for her bed and I may make a sign for her bedside.
Prayer requests:
- That Farrah's lung will get strong so she can start breathing on her own
- That Farrah's doctors can figure out a good fortifier that Farrah can tolerate so she can start having much needed weight gain.
- That Farrah be protected from any infections throughout her time in the NICU.
- That the insertion of a new PICC line goes smoothly.
- That her blood transfusion (if she needs it) goes smoothly.
The photos below were also on facebook, but they are are most recent ones from the past few days.
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