Kierson is at 35 weeks now and continues to show steady improvement despite small ups and downs dealing with her oxygen requirement. She is now down to 5 L/min of oxygen with an FiO2 of just under 50%. She has been at this setting for awhile now as she is no longer on steroids that help simmer down inflammation in her lungs. We are grateful that her oxygen requirement has not increased past this.
She had her second eye exam today which showed no change in the retinopathy (which is good). She will continue to get these exams every 2 weeks. We made a sign to help Kierson's nurses and respiratory techs to remember to keep her oxygen settings as low as she will tolerate so that her retinopathy isn't made worse (due to unnecessarily high O2 settings).
Kierson continues to have heart rate drops and oxygen saturation drops as well. This is most likely due to her prematurity. Doesn't seem to be anything we can do about this other than hope her nurses aren't pre-occupied with one of Kierson's neighboring babies and is able to respond soon enough to prevent anything bad from happening.
Kierson is now feeding from a bottle as well as by tube feeds. She does great, however, yesterday she had about a 10 mL spit up without signs of aspiration. She did well today according to the latest report. Kierson is now up to about 3 1/2 pounds.
Overall, she is doing well and remains stable. Her doctors and nurses continue to prepare us for a little one that is going to be oxygen dependent for some unspecified amount of time when she comes home. We just hope that she continues to improve and is only on minimal amount of oxygen supplementation. We also hope for no tracheostomy.
We greatly appreciate your continued prayers for our little miracle baby. Her older sister is doing great and we are so grateful that she has not gotten sick yet. If momma gets sick, she can't see and hold Kierson.
Friday, February 26, 2010
Wednesday, February 17, 2010
February 17th, 2010
These past few days, Kierson has made steady improvement in her oxygen requirements. She is still on high-flow nasal cannula but this has been decreased to 5.5 L/min and an FiO2 of approx 28-30%. This is the best she has done, ... ever. This seemingly good news is tempered by the fact that this has been enabled by her being on steroids that act to reduce inflammation in her damaged little lungs. Her neonatologist is slowly weaning her off of steroids over the next number of days - as being on steroids blunts neurological development (so did being on the ventilator, but for different reasons). He said we can expect her oxygen requirement to go back up. We are hoping for the best.
Kierson's tube feeds have steadily continued to increase without any difficulties or complications. Today was a milestone as she was fed also by bottle for the first time. We are a little bitter about this, as we weren't notified that this was going to happen and WE wanted to be a part of this "first". Reportedly, she did well with the nipple feeds.
Deitre has begun making Kierson clothes to wear. Here is a picture of her Valentine's Day outfit. This has been a good project for Deitre as it makes her feel that she is able to do something for Kierson. This is one of Kierson's first smiles...if you look closely, she is getting mother's milk through her feeding tube.
Emmie continues to be her cheerful self. She is growing-in her bottom front teeth, babbling almost non-stop and smiling all the time. We have had to make the first adjustment to her crib, lowering it down six inches to prevent her from pulling herself up over the rail. She moves all over the crib and we find her sleeping in strange and what look like uncomfortable positions during her naps. She is a lot of fun. She likes to play with all her toys and especially likes you to play with her. Emmie can't wait for Kierson to come home!
Friday, February 12, 2010
February 12th, 2010
Kierson continues to require high flow oxygen at 7 liters/minute. Thankfully no significant desaturations. She does much better when she and her momma are doing Kangaroo Care (Deitre holds Kierson cuddled on her chest). Kierson becomes calm and her O2 requirements improve. Deitre wishes she could do this all day long (she is doing it up to 3 times/day).
Kierson is doing better with the tube feeds which are slowly being increased. Minimal aspirates. Having bowel movements with the help of glycerin. They have talked about having Kierson try to breast feed early next week. Deitre is a little nervous about this (she is a very, very private person).
Kierson had her first eye exam today. Deitre called me during my shift today and asked to meet me in the lobby outside the ED. She was crying as she told me the findings. The bad news is that she does have Retinopathy of Prematurity (ROP). The upside is that it is only Stage 2 (of 5), so it is not too severe and will be watched.
We continue to feel so helpless as our little girl is having such a struggle to survive with premature, damaged lungs. We are glad to have the most recent apneic spell behind us and very happy that she is extubated and taking breast milk again. It's just hard to take the news of ROP (this develops due to the high oxygen environment that she has been requiring to survive). I was really hoping that she would come through this without developing ROP. I think I may have been fooling myself.
Kierson's neonatologist continues to make mention of the real possibility of Kierson being trached (cutting small hole in her neck and placing a breathing tube into her trachea). We are very much hoping that we can avoid this. Kierson really needs to grow and develop new lung tissue. This is the only way that she will avoid being trached. Please pray for growth and development of new lung tissue as well as no new infections. Please continue to pray for both of us as we are worn thin.
Kierson is doing better with the tube feeds which are slowly being increased. Minimal aspirates. Having bowel movements with the help of glycerin. They have talked about having Kierson try to breast feed early next week. Deitre is a little nervous about this (she is a very, very private person).
Kierson had her first eye exam today. Deitre called me during my shift today and asked to meet me in the lobby outside the ED. She was crying as she told me the findings. The bad news is that she does have Retinopathy of Prematurity (ROP). The upside is that it is only Stage 2 (of 5), so it is not too severe and will be watched.
We continue to feel so helpless as our little girl is having such a struggle to survive with premature, damaged lungs. We are glad to have the most recent apneic spell behind us and very happy that she is extubated and taking breast milk again. It's just hard to take the news of ROP (this develops due to the high oxygen environment that she has been requiring to survive). I was really hoping that she would come through this without developing ROP. I think I may have been fooling myself.
Kierson's neonatologist continues to make mention of the real possibility of Kierson being trached (cutting small hole in her neck and placing a breathing tube into her trachea). We are very much hoping that we can avoid this. Kierson really needs to grow and develop new lung tissue. This is the only way that she will avoid being trached. Please pray for growth and development of new lung tissue as well as no new infections. Please continue to pray for both of us as we are worn thin.
Wednesday, February 10, 2010
February 10th, 2010
Kierson was extubated 2 days ago with much apprehension on our part. Her oxygen requirement was erratic over the weekend prior to the extubation and her CXR appeared to be moderately worse. Following the extubation, she was put immediately on CPAP (continuous positive airway pressure) to help her continue to ventilate (roll down your window at highway speeds, stick your head out the window allowing the wind up your nose, now breathe...this is like CPAP). She didn't tolerate this very well and they removed this after about 2 hours.
They then placed her on high-flow nasal cannula with 8 liters of oxygen/minute and an FiO2 of 80% (this is pretty high flow and very high percentage of oxygenation - we breathe 21% oxygen). This was concerning as she wasn't on such high settings prior to her apneic episode. She still continued to have major retractions and oxygen desaturations throughout the evening, night and following morning. Her neonatologist sat Deitre down (I was working in the ED) and discussed the possibility of re-intubation if Kierson continued to work so hard to breathe. She began to stabilize the following day and remained with less severe desaturations yesterday and today.
Her tube feeds continue to be increased and there is no sign of any bowel issues at this time. This is the best news so far. We need her to grow and put on weight as this is the only way her lung condition is going to improve. Her neonatologist is increasing her tube feeds very slowly as he wants to be certain Kierson continues to not have any bowel issues.
We continue to do what we can to pass the time. Deitre has been making preemie clothes for Kierson. They are pretty impressive. I have been working. Emmie is continuing to grow up, cutting some bottom teeth and doing lots of talking. She is not interested in crawling but loves to stand up (with some assistance). She continues to be a very good-natured little baby, never fussin' and goes to sleep when you put her down to bed (and wakes up giggling). She has been a real blessing in our lives.
Thanks for your continued prayers for Kierson and for us. Pictures to come soon.
They then placed her on high-flow nasal cannula with 8 liters of oxygen/minute and an FiO2 of 80% (this is pretty high flow and very high percentage of oxygenation - we breathe 21% oxygen). This was concerning as she wasn't on such high settings prior to her apneic episode. She still continued to have major retractions and oxygen desaturations throughout the evening, night and following morning. Her neonatologist sat Deitre down (I was working in the ED) and discussed the possibility of re-intubation if Kierson continued to work so hard to breathe. She began to stabilize the following day and remained with less severe desaturations yesterday and today.
Her tube feeds continue to be increased and there is no sign of any bowel issues at this time. This is the best news so far. We need her to grow and put on weight as this is the only way her lung condition is going to improve. Her neonatologist is increasing her tube feeds very slowly as he wants to be certain Kierson continues to not have any bowel issues.
We continue to do what we can to pass the time. Deitre has been making preemie clothes for Kierson. They are pretty impressive. I have been working. Emmie is continuing to grow up, cutting some bottom teeth and doing lots of talking. She is not interested in crawling but loves to stand up (with some assistance). She continues to be a very good-natured little baby, never fussin' and goes to sleep when you put her down to bed (and wakes up giggling). She has been a real blessing in our lives.
Thanks for your continued prayers for Kierson and for us. Pictures to come soon.
Sunday, February 7, 2010
February 7th, 2010
Kierson showed quite a bit of improvement by Friday the 5th but has really been unchanged over the weekend. We were hoping she would be ready for extubation but she is making too many tracheal secretions and her CXR looks more hazy the past two days that the neonatalogist felt it was better to keep her intubated. She is taking very small quantities of breast milk through her feeding tube and having intermittant residuals for unknown reasons (we had been up to 27 mL every 3 hours without residuals and now at only 3 mL every 3 hours with residuals). We are glad that her belly continues to feel soft and non-distended and that she is having small bowel movements. This suggests no intestinal issues.
We are still anxious for Kierson to be able to take more tube feeds so that she will put on weight and grow. She needs to develop new lung tissue to help her get past the current complications with her damaged premature lungs.
We continue to pray for patience and peace in these rough times. Please pray with us for Kierson's continued development and for resolution to her current condition. Today, Kierson turned 33 weeks gestational (8 weeks since birth).
We are still anxious for Kierson to be able to take more tube feeds so that she will put on weight and grow. She needs to develop new lung tissue to help her get past the current complications with her damaged premature lungs.
We continue to pray for patience and peace in these rough times. Please pray with us for Kierson's continued development and for resolution to her current condition. Today, Kierson turned 33 weeks gestational (8 weeks since birth).
Wednesday, February 3, 2010
February 3rd, 2010
Another long day up in the NICU. Kierson is certainly getting better with her breathing. She remains on the ventilator and according to her neonatologist will probably continue on this for the next few days. He doesn't want to rush anything. Although her CXR looks much improved (the pulmonary edema has cleared, but the damaged lungs remain unchanged), it was noted on the xray that some loops of small bowel appear suspicious for necrotizing enterocolitis (NEC).
Hearing this possibility this morning made the hair on the back of my neck stand up. This can get bad (as I remember from reading about it in medical school), causing dead bowel requiring surgical resection. There is a spectrum of NEC according to our neonatalogist. Mild to severe. If this is the beginning of NEC, we hope that this will only be a "mild" case of it since Kierson has been on antibiotics for four days now that would normally handle the most likely culprits. We must wait and see.
The good news is that her tummy remains soft, she continues to have bowel movements and is no longer having bilious gastric aspirates (essentially, no signs of obstruction or bowel dysfunction...). The downside is that her neonatologist says "no more tube feeds (ie, no more breast milk) for the next 7 days" to see what her bowels do (to see if this is NEC or not). She is back on TPN (total parenteral nutrition) through a PICC line (peripherally inserted central catheter) in her tiny little arm. This means that overall growth will probably slow down as compared to what she was doing on tube feeds with breast milk. This is NOT what we want. We need her to continue to grow and put on weight as the growth brings new lung tissue (this will help with the primary problem of having damaged premature lungs).
So, the unpleasant NICU journey continues. Just as we thought we were getting past the recent infection with Proteus and E. coli (they just reported the E. coli in the tracheal aspirate culture today) that caused her to stop breathing requiring re-intubation, we are faced with the possibility of significant morbidity from the NEC.
We continue to be encouraged by other couples who have similar micro-preemies in the NICU undergoing similar but different complications. We also are greatly encouraged by the kind words and prayers of our family and friends. We don't see the end in sight, yet. We are being prepared for a very long road (hasn't this been long enough?...) by our neonatalogist...of course, we hope he's wrong.
Please pray for Deitre as this has been an extremely stress filled day for her.
Hearing this possibility this morning made the hair on the back of my neck stand up. This can get bad (as I remember from reading about it in medical school), causing dead bowel requiring surgical resection. There is a spectrum of NEC according to our neonatalogist. Mild to severe. If this is the beginning of NEC, we hope that this will only be a "mild" case of it since Kierson has been on antibiotics for four days now that would normally handle the most likely culprits. We must wait and see.
The good news is that her tummy remains soft, she continues to have bowel movements and is no longer having bilious gastric aspirates (essentially, no signs of obstruction or bowel dysfunction...). The downside is that her neonatologist says "no more tube feeds (ie, no more breast milk) for the next 7 days" to see what her bowels do (to see if this is NEC or not). She is back on TPN (total parenteral nutrition) through a PICC line (peripherally inserted central catheter) in her tiny little arm. This means that overall growth will probably slow down as compared to what she was doing on tube feeds with breast milk. This is NOT what we want. We need her to continue to grow and put on weight as the growth brings new lung tissue (this will help with the primary problem of having damaged premature lungs).
So, the unpleasant NICU journey continues. Just as we thought we were getting past the recent infection with Proteus and E. coli (they just reported the E. coli in the tracheal aspirate culture today) that caused her to stop breathing requiring re-intubation, we are faced with the possibility of significant morbidity from the NEC.
We continue to be encouraged by other couples who have similar micro-preemies in the NICU undergoing similar but different complications. We also are greatly encouraged by the kind words and prayers of our family and friends. We don't see the end in sight, yet. We are being prepared for a very long road (hasn't this been long enough?...) by our neonatalogist...of course, we hope he's wrong.
Please pray for Deitre as this has been an extremely stress filled day for her.
Tuesday, February 2, 2010
February 2nd, 2010
Kierson has made substantial progress over the past two days. She has stopped having major oxygen desaturations and heart rate drops. However, she continues to have minor desaturations that the nurses prevent from worsening by simply turning up her oxygen concentration. She is now getting nebulizer treatments every 3 hours that seem to be helping prevent bronchospasms that may have been the problem all along. Her tracheal aspirate culture came back yesterday showing signs of bacterial growth, specifically Proteus. She was initially put on 3 broadspectrum antibiotics (amikacin, vancomycin, zosyn) but now is down to 2 antibiotics (ampicillin and amikacin) since we now know what we're fighting. We're glad it's not the pseudomonas that is 'going around'.
Our neonatologist stated that if she continues to do well, he'll consider extubating Kierson tomorrow. Doesn't mean that it will happen tomorrow, but he is going to consider it. He doesn't want her intubated any longer than necessary as it causes blunting of her neurologic development. He thinks that she may need to go back on steroids to help her lungs get past the inflammation related to the recent infection but will evaluate this in a few days once we're past the infection. However, despite the benefits of the steroids helping her lungs out, their use comes with the trade-off of also causing blunting of her neurologic development.
It's been a miserable past 4 days. We are emotionally exhausted from the critical condition that Kierson has been in. We are very much relieved (...but still very tired...) that she is showing some stability. We know that we aren't out of the woods just yet.
We are very grateful to my fellow residents have taken my shifts in the ED so that I can be up in the NICU with Kierson and Deitre. Thank you all for your continued prayers for Kierson, her docs, nurses and respiratory therapists, and for us.
Here's a pic of Kierson's older sister, Emmerson, showing her recent interest in tools (...soft, chewable tools...). A girl after my own heart...
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