David is doing about the same. The doctors words were, "better than last night but not as good as 2 days ago." It was really hard to see him on the oscilator again with the nitric oxide tanks at his bedside. The equipment makes an awful lot of noise, he looks swollen and was agitated. All we could do was sit and stare. His newest goals have been set to weaning medications as tolerated and of course weaning his oscilator and oxygen settings after the medications. As of yet, they have been unable to decrease anything but he is stable for now. The doctor thinks much of his problem is simple immaturity of the cardiovascular and pulmonary systems. This means only time will tell when he will tolerate all of the weaning. There was also mention of the possibility of chronic lung disease. His blood cultures came back negative which seemed to sort of surprise the doctor.
Mary Louise is doing quite well. She is tolerating weaning of her vent settings and oxygen. Her blood cultures, however, are still positive and they had to pull one of her umbilical lines today. She now has an IV in her foot and one in her arm. Hopefully, these will last at least 48 hours. She still has an umbilical artery line and they are hoping that it is not causing the infection as it is allowing for blood draws without repeated needle sticks. We'll see in the next couple of days. Her plan is to continue weaning the settings on the vent and weaning of the dopamine as tolerated.
More news tomorrow...
Monday, May 4, 2009
First night / day in new routine
Last night the phone rang - and rang - David's blood pressure dropped again and they put him back on the oscilator rather than the ventilator after his oxygen level dropped. They also added another blood pressure medicine (epinephrine) and a med to help with kidney perfusion and seizures (phenobarbital) as he was having "alot of movement" and they were unsure as to whether it was a benign seizure - common for his gestational age. So, two steps forward. One leap back I suppose. His urine output had decreased significantly (now too low) and they were hoping that it would pick up again once his blood pressure was stable. They still can't rule out an infection as the primary problem but they think it is more likely pulmonary hypertension again. Apparently preemie babies are born with 2 heart issues - the PDA (now closed on David) and a patent foramen ovale. This one tends to close in time - cannot be fixed with medication and allows another avenue for David's heart to shunt blood in the wrong direction causing higher pressures in his lungs.
This morning I phoned in to check on them. David's urine output has increased once more to an acceptable level but his blood pressure has fluctuated periodically. He is considered relatively stable at this time however and will remain on the oscilator for now. He is back on the nitric oxide as well to help with the pulmonary hypertension. We are praying this new / old issue resolves quickly.
Mary Louise is doing well according to her nurse today. She is tolerating more stimulation - changing of position, etc. and is slowly being weaned once more off of her dobutamine as well as her ventilator settings. She is now 2.2 pounds.
Roller coaster - back on. We will see them this afternoon and if anything has changed, I'll post more then.
Love to all, Heather
This morning I phoned in to check on them. David's urine output has increased once more to an acceptable level but his blood pressure has fluctuated periodically. He is considered relatively stable at this time however and will remain on the oscilator for now. He is back on the nitric oxide as well to help with the pulmonary hypertension. We are praying this new / old issue resolves quickly.
Mary Louise is doing well according to her nurse today. She is tolerating more stimulation - changing of position, etc. and is slowly being weaned once more off of her dobutamine as well as her ventilator settings. She is now 2.2 pounds.
Roller coaster - back on. We will see them this afternoon and if anything has changed, I'll post more then.
Love to all, Heather
Sunday, May 3, 2009
2 good days - time for a blip
So after 2 good days, we got another late night visit from the NICU staff - this time the NNP (nurse practitioner). My heart just sank when I heard the knock on the door after 10pm. Mary Louise's blood pressure and urine output dropped last night and they weren't sure why. She was started on Dopamine again - a low dose. One of her blood cultures came back positive for a tiny amount of yeast - probably due to the 3 antibiotics she was on. Her infection, although still considered rather minor, is unyeilding in spite of the antibiotic therapy and she has now been started on a daily med for yeast in addition to the prophylactic one she was already receiving biweekly. The doctor thinks her umbilical lines may be harboring bacteria but is waiting until the cultures come back in the morning to decide whether or not to pull them. The problem is that at her size, IV access will be very difficult to maintain. Dopamine is extremely harsh on the veins to compound the issue. Another central line is not reccommended while infections are active. So, that's the circle.
This morning her urine output had increased and her color continues to appear normal. Her blood pressure has stabilized and they are still unsure as to why it dropped to begin with. The doctor thinks it may be due to her body needing to maintain a higher pressure than they would normally think neccessary at her age. They brought her pressure up, and she stabilized, so they adjusted the weaning parameters of her dopamine. She is still considered to be doing well overall and we are praying that her cultures come back negative and her infection clears. They are still slowly weaning her ventilator settings and although we've been assured it will be a long road, she is making progress there as well.
Today, David's blood pressure dropped as well. But in contrast to Mary Louise, his urine output has been really high. The theory is that his body likes a lower blood pressure as he is asymptomatic otherwise. So, they are watching him very closely for any signs of a perfusion problem - such as low urine output which would mean that there is not enough circulation to the kidneys - and adjusting medications accordingly. A rush ECHO was done to make sure his PDA remained closed and it has. His pulmonary hypertension also remains under control. Cultures have been sent off for him as well to ensure he is not getting an infection so we wait for the results from those. His incision still looks good and overall he appears to look good as well.
The problem is that there really isn't a protocol for blood pressure on babies of this gestational age and size. So, they are being treated symptomatically.
The doctor has told us that David cannot be fed for 2 weeks due to his surgery but Mary Louise will hopefully start tiny (trophic) feedings this week.
The nurse practitioner brought us to the NICU last night to show us how we can "hold" our babies. We were so pleased to have some contact as we held hands and cuddled heads and toes. David still gets overstimulated really easily but seemed to tolerate us just touching a hand or his feet quite well.
We did come home today with much support from the NICU doctors and staff. My heart aches for my babies but I feel lucky that we are not to far from them and that they are in good hands with the staff at the hospital.
This morning her urine output had increased and her color continues to appear normal. Her blood pressure has stabilized and they are still unsure as to why it dropped to begin with. The doctor thinks it may be due to her body needing to maintain a higher pressure than they would normally think neccessary at her age. They brought her pressure up, and she stabilized, so they adjusted the weaning parameters of her dopamine. She is still considered to be doing well overall and we are praying that her cultures come back negative and her infection clears. They are still slowly weaning her ventilator settings and although we've been assured it will be a long road, she is making progress there as well.
Today, David's blood pressure dropped as well. But in contrast to Mary Louise, his urine output has been really high. The theory is that his body likes a lower blood pressure as he is asymptomatic otherwise. So, they are watching him very closely for any signs of a perfusion problem - such as low urine output which would mean that there is not enough circulation to the kidneys - and adjusting medications accordingly. A rush ECHO was done to make sure his PDA remained closed and it has. His pulmonary hypertension also remains under control. Cultures have been sent off for him as well to ensure he is not getting an infection so we wait for the results from those. His incision still looks good and overall he appears to look good as well.
The problem is that there really isn't a protocol for blood pressure on babies of this gestational age and size. So, they are being treated symptomatically.
The doctor has told us that David cannot be fed for 2 weeks due to his surgery but Mary Louise will hopefully start tiny (trophic) feedings this week.
The nurse practitioner brought us to the NICU last night to show us how we can "hold" our babies. We were so pleased to have some contact as we held hands and cuddled heads and toes. David still gets overstimulated really easily but seemed to tolerate us just touching a hand or his feet quite well.
We did come home today with much support from the NICU doctors and staff. My heart aches for my babies but I feel lucky that we are not to far from them and that they are in good hands with the staff at the hospital.
Saturday, May 2, 2009
Saturday Evening Update
Heather and I just got back from the NICU, and the babies are doing well. Mary Louise is doing good and they will probably starting to feed her sometime before wednesday. She is still showing some sign of an infection, but the doctor is positive about her condition at this time. David is doing great considering he had a major surgery yesterday. He has good color, and is peeing so much that they are regulating his meds to reduce his urine output. All in all, we will probably get some sleep tonight. My little sweet pea, and my lil sweet girl are making me a proud papa. They will only be 2 weeks old tomorrow and they are already giving me gray hair. Oh yeah, David's PDA valve is closed at this time, but can reopen, but is closed for now. Mary's PDA valve is showed inprovement of closing and is now cosidered small from previous small/moderate. Definitly improvement. So the roller coaster is running smooth at this time. Thank You for all the praying. It is definitly working, so please keep them coming.
Sincerely,
Brent
Sincerely,
Brent
The day before that day
I am trying to officially go home tomorrow and start a routine of commuting here twice a day. I must say I'm having a harder time with it than I thought I would. All things considered we are lucky to live a mere 20 minutes away from the hospital as many of the parents seem to live up to an hour away and make a few trips a week rather than a day. Brent is ready to "get back to some sort of normalcy" however and I know that health wise it would do me some good to do so as well. We have met with the social worker and have been assured that if uncomfortable with commuting, we are able to call anytime and reserve a room for a night or 2 as long as the hospital is not full.
I have been asked by the social worker to help with a pamphlet she will start working on to orient the preemie parents to the NICU routine. She simply wants an opinion on the rough draft which will take awhile to complete. I am happy to oblige. I have also been asked by a few other nurses and friends how I feel. To be frank - I can't describe how wrong it feels to have gone through all of this and know that I have 2 children that I can't hold, can't take home, can't nurse and perhaps most damaging, cannot by any means protect from anything at all - including trauma, infection, pain and perhaps much worse. My body actually needs them - I sit and pump every 2 to 3 hours and think of them just to see if I can bring forth a little more milk. I dream about the first time I might be able to hold them and think what an amazing moment that might be. I think about them at home getting into everything and laugh about them playing with toys and sitting in the kitchen beating on pots like my brothers and I used to. I stare for hours at our babies through thick plastic and relish the thought of simply touching a hand. I joked the other day that Mary Louise and David absolutely have it made with us. All they have to do is poop, pee and eat and we just tear up with pride. A gripping of the hand or opening of their eyes is simply an added bonus some days. I've intently studied every new tiny fluff of hair, every movement, their equipment, their mannerisms in an effort to get to know them as much as I can. Brent actually noticed the discoloration on David's little belly prior to the nurse being concerned. We both realize how difficult getting from each point A to each point B is. It's actually quite heartbreaking. But our only concern is our children - they may be tiny but the mean everything to us.
I hope that gives those interested some type of insight - felt good to journal it anyhow.
Today Mary Louise looks beautiful. She blinked her big eyes for us a couple of times and held our fingers for a bit. She seems to have found her tongue and sticks it out and blows bubbles quite often. She has also taken to sucking on her feeding tube (placed only to release air- still not feeding yet). Her vent pressure and oxygen have been reduced significantly and she is maintaining stable vital signs without any medications. Her antibiotic therapy continues and although we don't have conclusive results on the organism, her bacterial infection is considered to be "minor". Overall, the neonatologist is pleased with her progress as of yesterday evening. He is talking about starting feedings as early as next week. She has lost a bit of weight - she is now 2.1 pounds. However, after stopping all blood pressure medications, some fluid loss is expected. I haven't spoken to the doctor about it yet though - hopefully this afternoon.
David looks good this morning. He's had some swelling around his face but we've been told that he had "lots of fluids" during his surgery so the swelling is no more than expected. The neonatologist was pleased with the surgical outcome as of yesterday evening and even went so far as to tell us that yesterday "was a good day" - followed by an assurance that more bad days were sure to come. Ha - can't let us relax too much - we might crack a smile. His incision looks good. He is producing lots of urine and has been completely weaned off of the nitric oxide. Overall he is much more stable than he was a day or 2 ago. He is still on dopamine however and there is talk of starting to wean again today. His vent settings are still a little high but considering all he's been through over the last 24 hours, this is not unexpected. They have been able to reduce his pressure a bit. The doctor is thinking about starting feedings as early as next week but David would have to really do well to do so. He was moving a bit this morning and although he is still on pain medication and slightly sedated, he seems to have processed the anesthesia well.
The feedings: along with the excitment of food comes a new list of risks for our little ones. Most concerning is the possiblity of necrotizing entercolitis. This is when the intestine develops essentially a rotten area which must be removed. Preemie babies are prone to this potentially fatal complication and we're told it takes a "bit of luck and prayers" to avoid it.
So we're still hanging in there - appreciating the happy moments and little milestones and awaiting the next hurdle...
I have been asked by the social worker to help with a pamphlet she will start working on to orient the preemie parents to the NICU routine. She simply wants an opinion on the rough draft which will take awhile to complete. I am happy to oblige. I have also been asked by a few other nurses and friends how I feel. To be frank - I can't describe how wrong it feels to have gone through all of this and know that I have 2 children that I can't hold, can't take home, can't nurse and perhaps most damaging, cannot by any means protect from anything at all - including trauma, infection, pain and perhaps much worse. My body actually needs them - I sit and pump every 2 to 3 hours and think of them just to see if I can bring forth a little more milk. I dream about the first time I might be able to hold them and think what an amazing moment that might be. I think about them at home getting into everything and laugh about them playing with toys and sitting in the kitchen beating on pots like my brothers and I used to. I stare for hours at our babies through thick plastic and relish the thought of simply touching a hand. I joked the other day that Mary Louise and David absolutely have it made with us. All they have to do is poop, pee and eat and we just tear up with pride. A gripping of the hand or opening of their eyes is simply an added bonus some days. I've intently studied every new tiny fluff of hair, every movement, their equipment, their mannerisms in an effort to get to know them as much as I can. Brent actually noticed the discoloration on David's little belly prior to the nurse being concerned. We both realize how difficult getting from each point A to each point B is. It's actually quite heartbreaking. But our only concern is our children - they may be tiny but the mean everything to us.
I hope that gives those interested some type of insight - felt good to journal it anyhow.
Today Mary Louise looks beautiful. She blinked her big eyes for us a couple of times and held our fingers for a bit. She seems to have found her tongue and sticks it out and blows bubbles quite often. She has also taken to sucking on her feeding tube (placed only to release air- still not feeding yet). Her vent pressure and oxygen have been reduced significantly and she is maintaining stable vital signs without any medications. Her antibiotic therapy continues and although we don't have conclusive results on the organism, her bacterial infection is considered to be "minor". Overall, the neonatologist is pleased with her progress as of yesterday evening. He is talking about starting feedings as early as next week. She has lost a bit of weight - she is now 2.1 pounds. However, after stopping all blood pressure medications, some fluid loss is expected. I haven't spoken to the doctor about it yet though - hopefully this afternoon.
David looks good this morning. He's had some swelling around his face but we've been told that he had "lots of fluids" during his surgery so the swelling is no more than expected. The neonatologist was pleased with the surgical outcome as of yesterday evening and even went so far as to tell us that yesterday "was a good day" - followed by an assurance that more bad days were sure to come. Ha - can't let us relax too much - we might crack a smile. His incision looks good. He is producing lots of urine and has been completely weaned off of the nitric oxide. Overall he is much more stable than he was a day or 2 ago. He is still on dopamine however and there is talk of starting to wean again today. His vent settings are still a little high but considering all he's been through over the last 24 hours, this is not unexpected. They have been able to reduce his pressure a bit. The doctor is thinking about starting feedings as early as next week but David would have to really do well to do so. He was moving a bit this morning and although he is still on pain medication and slightly sedated, he seems to have processed the anesthesia well.
The feedings: along with the excitment of food comes a new list of risks for our little ones. Most concerning is the possiblity of necrotizing entercolitis. This is when the intestine develops essentially a rotten area which must be removed. Preemie babies are prone to this potentially fatal complication and we're told it takes a "bit of luck and prayers" to avoid it.
So we're still hanging in there - appreciating the happy moments and little milestones and awaiting the next hurdle...
Friday, May 1, 2009
David's surgery
After a little visit with us being allowed to hold his hand, say prayers, tell him how much we love him and how proud we are of his fighting efforts, David was taken into surgery by a huge team at about 7:30 this morning. The surgery started at 8AM and was over just before 9AM. He was back in his little corner of the NICU by 10 past 9.
The surgeon was pleased overall with the surgery. David did in fact have a tiny perforation in his intestines which was removed. His vital signs - notably his blood pressure - remained stable throughout. His neonatologist also seemed pleased. He will continue the antibiotic therapy previously in progress for a few more days to ensure proper protection. David's white blood cells have been elevated, but his blood cultures were always negative. Nonetheless he was started on antibiotics a few days ago - and now we know why his white cell count was elevated. The perforation was caught very early - prior to David showing any outward signs of getting sick so he has very good chances for a recovery from this problem.
It's always hard for us to make decisions like this - put all trust in a doctor (person) you've never met and don't know. We are pleased with the outcome so far but remain rattled from a sleepless night and extremely difficult morning.
Our sincere thanks to the nursing staff here at the hospital. Each area we've been in has been so gracious and accomadating. The Labor and Delivery nurses continue to follow our family progress. I see them in the halls sometimes and they always offer hugs, prayers and support. The NICU staff sat and talked to me this morning - some staying extra hours to see that everything went as smoothly as possible and when they had time, they came out of the surgical suite to give me updates on the progress in surgery. We just can't ask for anymore support from them or from our friends and family. We are truly lucky and blessed to have such warmth and support around us all the time.
As I sat next to David's isolette this morning holding his tiny hand, the feeling was overwhelming. Fear, focus, peace and anguish all at once. I remember looking at Brent last night and rather hysterically exclaiming, "WHY couldn't he just POOP!?" I suppose when you start asking why about some things, you may as well admit insanity. There are just no answers the the why's I have these days.
So, David is doing well, this morning has been successful. He will be kept quiet and comfortable for the rest of the day and weaning of meds and respirator will most likely continue tomorrow. We took some photos of the morning. I suppose it's a bit strange but I want so badly to take in every second I have with my babies - good or bad. Anyhow, I'll post them shortly.
Brent is poking fun at my ramblings - obviously, I needed a bit of journal therapy this morning. Mary Louise had a rather uneventful night and is resting quite well. All of her ventilator settings and oxygen have been reduced. She will have blood gases drawn once more at 10am and they plan to continue to wean her settings accordingly.
Many of the photos are dark because they keep the areas the babies are in darkened to avoid overstimulation and allow for rest.
Again - our thanks and love to all,
Heather
The surgeon was pleased overall with the surgery. David did in fact have a tiny perforation in his intestines which was removed. His vital signs - notably his blood pressure - remained stable throughout. His neonatologist also seemed pleased. He will continue the antibiotic therapy previously in progress for a few more days to ensure proper protection. David's white blood cells have been elevated, but his blood cultures were always negative. Nonetheless he was started on antibiotics a few days ago - and now we know why his white cell count was elevated. The perforation was caught very early - prior to David showing any outward signs of getting sick so he has very good chances for a recovery from this problem.
It's always hard for us to make decisions like this - put all trust in a doctor (person) you've never met and don't know. We are pleased with the outcome so far but remain rattled from a sleepless night and extremely difficult morning.
Our sincere thanks to the nursing staff here at the hospital. Each area we've been in has been so gracious and accomadating. The Labor and Delivery nurses continue to follow our family progress. I see them in the halls sometimes and they always offer hugs, prayers and support. The NICU staff sat and talked to me this morning - some staying extra hours to see that everything went as smoothly as possible and when they had time, they came out of the surgical suite to give me updates on the progress in surgery. We just can't ask for anymore support from them or from our friends and family. We are truly lucky and blessed to have such warmth and support around us all the time.
As I sat next to David's isolette this morning holding his tiny hand, the feeling was overwhelming. Fear, focus, peace and anguish all at once. I remember looking at Brent last night and rather hysterically exclaiming, "WHY couldn't he just POOP!?" I suppose when you start asking why about some things, you may as well admit insanity. There are just no answers the the why's I have these days.
So, David is doing well, this morning has been successful. He will be kept quiet and comfortable for the rest of the day and weaning of meds and respirator will most likely continue tomorrow. We took some photos of the morning. I suppose it's a bit strange but I want so badly to take in every second I have with my babies - good or bad. Anyhow, I'll post them shortly.
Brent is poking fun at my ramblings - obviously, I needed a bit of journal therapy this morning. Mary Louise had a rather uneventful night and is resting quite well. All of her ventilator settings and oxygen have been reduced. She will have blood gases drawn once more at 10am and they plan to continue to wean her settings accordingly.
Many of the photos are dark because they keep the areas the babies are in darkened to avoid overstimulation and allow for rest.
Again - our thanks and love to all,
Heather
 |
| David's abdominal surgery day |
Surgery
The surgeon came into our room about 10:30 pm last night and discussed his prognosis of David's condition. Basically he said that the x-Rays did not show any perforation in his intestines or abdomen, but looking at the swelling in his tummy and the discoloration. He believes that David has a spontaneous perforation to his bowel. He is doing an exploratory surgery to find and repair this problem at 7 am on Friday. He basically said that if this problem is left alone David would get sicker and most likely pass away. The surgery is risky, and the chance of his survival is 50\50, but without it would surely have a bad ending. So without much choice, Heather and I are allowing the surgery, and are praying hard that God doesn't decide to take another one of our babies. Please pray for David, and Mary as you have time today.
Thanks,
Brent
Thanks,
Brent
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