Sunday, November 6, 2011
Wednesday, September 14, 2011
6.5 Months (3.5 Corrected)
Gabe had a tough week. He had been quite irritable and not eating or sleeping well for the last couple weeks or more and the swelling of fluid around the shunt as it ran along Gabe's skull kept growing. Last Wednesday, Dr. Riva-Cambrin, Gabe's neurosurgeon, decided that he needed to redo Gabe's shunt. It was scheduled for the following Thursday, which would have been tomorrow.
Early on the swelling around the shunt looked like a sausage-shaped protrusion running along the side of his head. By Sunday, it looked like you could fit half a dozen sausages in the swelling. It was so bad it pushed his ear out. And the pocket was very tight indicating great pressure in the skull. In addition, Gabe's irritibility and eating issues continued to get worse. So after consulting with the resident neurosurgeon on call we brought Gabe to the ER at Primary Children's.
After a brief evaluation, the neurosurgery team decided that the situation was not emergent and they scheduled the operation for Monday. However, Gabe was admitted to Primary Children's so they could keep an eye on him in case his situation deteriorated.
The surgery took about 2 hours and Dr. Riva-Cambrin said it went well. The surgeon first placed a new shunt on the opposite side of the first one. He mentioned that usually he can just "dig through the skull with his knife" but that Gabe's skull was thick (6mm) and he had to "break out the drill". When the new shunt was placed he noticed that there was pressure in the skull which was relieved immediately.
Dr. Riva-Cambrin then completely removed the old shunt and did some repair work so the old hole would not continue to leak into the swollen pocket under Gabe's scalp. Dr. Riva-Cambrin evaluated the shunt after the surgery and found that it was blocked with "gunk"---that gunk being old blood and tissue from Gabe's original en utero brain injury. Dr. Riva-Cambrin mentioned that when he placed the original shunt, the CS fluid was yellowy, but now it was "crystal clear" as it should be. So he is confident that the new shunt will not get blocked. The new shunt does not have a programmable valve and will has a statistically less chance of getting blocked.
Gabe was in a lot of pain following the surgery and was drugged heavily to alleviate it. He did not want to eat very much for 48 hours following the surgery. But he has now turned a corner, his pain is visibly reduced, and he is starting to eat well. We are about to take him home.
Early on the swelling around the shunt looked like a sausage-shaped protrusion running along the side of his head. By Sunday, it looked like you could fit half a dozen sausages in the swelling. It was so bad it pushed his ear out. And the pocket was very tight indicating great pressure in the skull. In addition, Gabe's irritibility and eating issues continued to get worse. So after consulting with the resident neurosurgeon on call we brought Gabe to the ER at Primary Children's.
After a brief evaluation, the neurosurgery team decided that the situation was not emergent and they scheduled the operation for Monday. However, Gabe was admitted to Primary Children's so they could keep an eye on him in case his situation deteriorated.
The surgery took about 2 hours and Dr. Riva-Cambrin said it went well. The surgeon first placed a new shunt on the opposite side of the first one. He mentioned that usually he can just "dig through the skull with his knife" but that Gabe's skull was thick (6mm) and he had to "break out the drill". When the new shunt was placed he noticed that there was pressure in the skull which was relieved immediately.
Dr. Riva-Cambrin then completely removed the old shunt and did some repair work so the old hole would not continue to leak into the swollen pocket under Gabe's scalp. Dr. Riva-Cambrin evaluated the shunt after the surgery and found that it was blocked with "gunk"---that gunk being old blood and tissue from Gabe's original en utero brain injury. Dr. Riva-Cambrin mentioned that when he placed the original shunt, the CS fluid was yellowy, but now it was "crystal clear" as it should be. So he is confident that the new shunt will not get blocked. The new shunt does not have a programmable valve and will has a statistically less chance of getting blocked.
Gabe was in a lot of pain following the surgery and was drugged heavily to alleviate it. He did not want to eat very much for 48 hours following the surgery. But he has now turned a corner, his pain is visibly reduced, and he is starting to eat well. We are about to take him home.
Tuesday, September 6, 2011
6 Months (3 Months Corrected)
We took the twins to the 6 month pediatrician visit today.
Zeke has now passed Gabe in both weight and head size at 13 lbs and 42 cm, respectively. Uncorrected, Zeke is in the 25% for weight and in the 75% for head size. In general, Zeke is doing very well. He is very interactive now. He smiles frequently and is now grabbing and playing with small toys on occasion. He is eating well and waking up two time every night to feed.
Gabe is 12 lbs, 11 oz.and his head is 41.3 cm, which puts him in the same percentiles as his twin. Gabe is showing delayed development in a few areas, but is progressing.
Zeke has now passed Gabe in both weight and head size at 13 lbs and 42 cm, respectively. Uncorrected, Zeke is in the 25% for weight and in the 75% for head size. In general, Zeke is doing very well. He is very interactive now. He smiles frequently and is now grabbing and playing with small toys on occasion. He is eating well and waking up two time every night to feed.
Gabe is 12 lbs, 11 oz.and his head is 41.3 cm, which puts him in the same percentiles as his twin. Gabe is showing delayed development in a few areas, but is progressing.
Sunday, July 10, 2011
18 Weeks, 2 Days (Corrected: 5 Weeks)
Well, it sure has been a while since I've posted. With twins, the times when our hands are not full are rather limited. . .
Gabe now weighs over 10 lbs. A couple weeks ago his shunt pressure valve was adjusted down to 60mmHg. This is almost a third of the pressure he started with. Dr. Riva-Cambrin made the adjustment in order to provide a lower pressure path for the fluid to drain down the tube rather than around the tube. Fluid is still pooling in Gabe's scalp and it is about the size of a finger. After our report to the doctor this week, he wants to reduce the pressure down to 30mmHg---the lowest setting---this Wed to fix this pooling fluid problem. Right now we have his head wrapped to keep it from filling with fluid.
Many people have asked about Gabe's development, given his PVL. We have been pleasantly surprised at the positive signs that Gabe is showing. He moves all his limbs, grabs fingers and objects with his hands, lifts his head when he is on his tummy, and puts weight on his feet.
Zeke is almost 9 lbs and is doing great. He is starting to give us the occasional social smile. Right now, Eliza and Isabella are fighting over who gets to hold him. They have both been great helpers these last few weeks.
Gabe now weighs over 10 lbs. A couple weeks ago his shunt pressure valve was adjusted down to 60mmHg. This is almost a third of the pressure he started with. Dr. Riva-Cambrin made the adjustment in order to provide a lower pressure path for the fluid to drain down the tube rather than around the tube. Fluid is still pooling in Gabe's scalp and it is about the size of a finger. After our report to the doctor this week, he wants to reduce the pressure down to 30mmHg---the lowest setting---this Wed to fix this pooling fluid problem. Right now we have his head wrapped to keep it from filling with fluid.
Many people have asked about Gabe's development, given his PVL. We have been pleasantly surprised at the positive signs that Gabe is showing. He moves all his limbs, grabs fingers and objects with his hands, lifts his head when he is on his tummy, and puts weight on his feet.
Zeke is almost 9 lbs and is doing great. He is starting to give us the occasional social smile. Right now, Eliza and Isabella are fighting over who gets to hold him. They have both been great helpers these last few weeks.
Thursday, June 9, 2011
13 Weeks, 6 Days (Corrected Age: 1 Week)
Yesterday we took Gabe to see the eye doctor and we are happy to report that his eyes "look great" according to the doctor. This means that his eyes are fully vascularized and Gabe does not need any more follow up visits to check for ROP. He will still get a normal eye follow up exam in a few months---just no more need for the two week check.
We also took Gabe to see his neurosurgeon, Dr. Riva-Cambrin. Gabe's head is down to the 97th percentile in size. This is great news. The doctor was pleased with how Gabe's shunt looks. The only exception is that there is a slight build up of fluid in two places: right where the ventricular catheter comes to the top of the skull near the fontanel and near the pressure valve a couple inches above his ear. We learned that the fluid is in fact cerebral-spinal fluid that is leaking out of his ventricles and instead of going down the tube is going around the tube. The doctor instructed us to have Gabe sleep at a 45 degree angle for a couple days to help the fluid drain in the right pathway.
On the home front, things are wonderful having the twins home. It is especially nice from my perspective getting to help feed them and spend so much time with them at this age. They are adorable and they joy of having a newborn is simply doubled with twins.
Our skills are improving at handling to babies: the other night I successfully held both boys while standing up and rocking them and feeding one a bottle. If you think about it, it's pretty tricky.
We also took Gabe to see his neurosurgeon, Dr. Riva-Cambrin. Gabe's head is down to the 97th percentile in size. This is great news. The doctor was pleased with how Gabe's shunt looks. The only exception is that there is a slight build up of fluid in two places: right where the ventricular catheter comes to the top of the skull near the fontanel and near the pressure valve a couple inches above his ear. We learned that the fluid is in fact cerebral-spinal fluid that is leaking out of his ventricles and instead of going down the tube is going around the tube. The doctor instructed us to have Gabe sleep at a 45 degree angle for a couple days to help the fluid drain in the right pathway.
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| Note Gabe's fluid build-up bulging around his shunt. |
Our skills are improving at handling to babies: the other night I successfully held both boys while standing up and rocking them and feeding one a bottle. If you think about it, it's pretty tricky.
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| Three of the most beautiful things on this earth. |
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| Two sleeping twins is a real treat! |
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| No, this is not done with smoke and mirrors. |
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| Airing out their derrieres. Darn those pesky rashes. |
Sunday, May 29, 2011
12 Weeks, 2 Days (Gestational Age: 40 Weeks)
Today is our original due date! So it was great timing to finally get Gabe home yesterday. His discharge weight was 3.53kg (7lbs, 12 oz). He does not have a monitor nor oxygen and the only drug he is on is for reflux. This last week in the hospital weaning him from caffeine and a monitor was definitely worth it!
This crazy ordeal began on Jan.27 when Nanette's water broke and ended on May 28---four long months. I told Nanette as we drove away from Primary Children's that this was the end of all our troubles (with the implied meaning of it being the front end).
Last night it was my shift to watch and feed the twins. I could tell by how much they slept that they both really, really love me and enjoy being awake around me. I am a novice at tandem feeding, tandem burping, tandem diaper changing, and tandem rocking. Some of those tasks just simply require two hands for one baby. I suppose it's too late for evolution to kick in and grow parents of twins an extra arm and hand. . .
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| Sick Nathan and Bella hold Gabe. |
Last night it was my shift to watch and feed the twins. I could tell by how much they slept that they both really, really love me and enjoy being awake around me. I am a novice at tandem feeding, tandem burping, tandem diaper changing, and tandem rocking. Some of those tasks just simply require two hands for one baby. I suppose it's too late for evolution to kick in and grow parents of twins an extra arm and hand. . .
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| My first tandem feeding experience. Note that Sam has a binky in each hand---just in case. |
Thursday, May 26, 2011
11 Weeks, 6 Days (GA: 39 Weeks)
Gabe has been off caffeine for 5 days and has had no episodes of apnea. The NICU needed the bed space so yesterday he was moved down to a normal room at Primary Children's. He is set to get discharged without a monitor on Saturday. Finally getting both twins home from the hospital will be a welcome end to one crazy period in our lives and the beginning of another.
Zeke has been home now for almost two weeks and is behaving exactly like a normal newborn baby.
Zeke has been home now for almost two weeks and is behaving exactly like a normal newborn baby.
Saturday, May 21, 2011
11 Weeks, 1 Day (GA: 39 Weeks)
Nanette and I drove up to Primary Children's today with the expectation of bringing Gabe home. However, it turned out to be "false labor". Dr. Coulter told Nanette yesterday that Gabe would be discharged today and sent home on caffeine for 7 weeks with an apnea monitor for at least 8 weeks. However, the doctors changed overnight (they are "on" for about 2 weeks and then get rotated) and the new doctor did not discharge Gabe.
During rounds this morning the NNP and the doctor went over Gabe's information and the expectation of discharge today. Near the end of the consultation, the doctor asked the NNP if Gabe was taking any medicines. "Vitamins, reflux meds, and caffeine." The doctor's head swung up with a surprised look. "Why is he on caffeine?" After a few minutes of discussion, the doctor decided he wanted to try to wean Gabe from caffeine before discharging him. So Gabe will be at Primary's at least another week. On the bright side, if Gabe does wean he will not likely be on a monitor when we take him home (or at least only on a monitor for a much shorter time).
Zeke is doing great. He is sleeping through parts of each night and not sleeping through the rest. But we are confident that when Gabe gets home they will just soothe each to sleep all night long. ;)
Wednesday, May 18, 2011
10 Weeks, 5 Days (GA: 38 Weeks)
Zeke is doing well at home. We figured out pretty quickly how to adjust the monitor settings since it was going off all the time. Dr. Coulter today told me that he thinks it should be a criminal offense to send parents home with their baby on a Pulse-Ox monitor (because the saturation alert goes off way too much). Dr. Chan told Nanette that he monitored a child for a year (with a respiratory/pulse monitor) after a previous 3 month old baby of his passed away from SIDS. Our pediatrician told us today that he recommends putting Zeke on it for a couple hours each day to see how he is doing. That is pretty much what we are doing. We have not used any of the oxygen we have for him since he has been doing so well.
Gabe is now on caffeine to help him breath more regularly. He is also on some reflux medication. He has been doing much better today on his breathing. He is on a low flow oxygen again at 25mL/minute. He also had his nasal cannula completely off for a few hours this afternoon and was doing just fine. Dr. Coulter said that he expects Gabe to go home early next week.
A funny thing happened today. I was holding Gabe at crib side and at eye level on the counter was a bottle of breast milk. There was a large sticker with large, capitalized text running from bottom of the bottle to the top: "HUMAN MILK". However, from my vantage point, the first two letters were not visible due to the clip of a clipboard which was in front of the bottle. I was amazed at what it appeared the nurse was warming up for Gabe. :)
Gabe is now on caffeine to help him breath more regularly. He is also on some reflux medication. He has been doing much better today on his breathing. He is on a low flow oxygen again at 25mL/minute. He also had his nasal cannula completely off for a few hours this afternoon and was doing just fine. Dr. Coulter said that he expects Gabe to go home early next week.
A funny thing happened today. I was holding Gabe at crib side and at eye level on the counter was a bottle of breast milk. There was a large sticker with large, capitalized text running from bottom of the bottle to the top: "HUMAN MILK". However, from my vantage point, the first two letters were not visible due to the clip of a clipboard which was in front of the bottle. I was amazed at what it appeared the nurse was warming up for Gabe. :)
Saturday, May 14, 2011
10 Weeks, 1 Day (GA: 38 Weeks)
Zeke is home!!!! He spent 71 Days in the NICU. He started at 2 lbs 5 oz. and left the hospital at 5 lb. 11 oz., if we don't take into account the weight of the monitor attached to him. We also have a couple big bottles of oxygen, but he is currently not using them. He is just on the monitor. This setup is how he has been in the hospital for almost a week. The oxygen is just there for a backup. In any case, his monitor goes off frequently and has to be carried with him wherever he goes.
It was quite the little party when we brought Zeke home today. All the kids ran to the car when we pulled into the driveway. Once we lathered them up with Purell and brought Zeke inside, all the other kids gathered around the car seat staring, laughing, poking, and prodding the baby to their hearts delight. It was absolutely delightful.
Gabe has had some spells of apnea in the last day and he is on watch to see whether it is still related to his recover from surgery and the associated drugs or whether there may be some new issue. The next day or two will really tell us the situation better as his body purges all the residual drugs. His bandages were off of his head today. Gruesome is probably the best word to describe how it looks right now. But he is back to full feedings by mouth and even nursed a couple times today before we had to take Zeke home.
It was quite the little party when we brought Zeke home today. All the kids ran to the car when we pulled into the driveway. Once we lathered them up with Purell and brought Zeke inside, all the other kids gathered around the car seat staring, laughing, poking, and prodding the baby to their hearts delight. It was absolutely delightful.
Gabe has had some spells of apnea in the last day and he is on watch to see whether it is still related to his recover from surgery and the associated drugs or whether there may be some new issue. The next day or two will really tell us the situation better as his body purges all the residual drugs. His bandages were off of his head today. Gruesome is probably the best word to describe how it looks right now. But he is back to full feedings by mouth and even nursed a couple times today before we had to take Zeke home.
Friday, May 13, 2011
10 Weeks (GA: 38 Weeks)
Yesterday after my post during the surgery (which was removed but is now back), 'Blogger' went down for 24 hours! Of all the days for blogger to go down! Sorry for the lack of updates about the surgery.
The surgery went well. Gabe now has a programmable shunt in place. The shunt uses a pressure valve that is currently programmed at 150mm. This is on the high side so that Gabe's normal filter and drainage system remains operable. They will do a CT scan today to monitor the ventricles and make sure they are not draining too rapidly. Gabe looks very different now. His head is smaller and shaped a little differently. In fact, for a while after the surgery, his sutures overlapped a little and created ridges on his skull. Of course, you can also see where the tube is running along his head and body.
Gabe came off the respirator and was extubated at about 9pm last night. He is on a nasal cannula at 1.5 liters per minute. He is eating by mouth again and is slowly building up to his pre-surgery volumes.
Zeke will be coming home tomorrow! He is still not using oxygen but has the occasional desat. So we will bring home oxygen and a monitor.
The surgery went well. Gabe now has a programmable shunt in place. The shunt uses a pressure valve that is currently programmed at 150mm. This is on the high side so that Gabe's normal filter and drainage system remains operable. They will do a CT scan today to monitor the ventricles and make sure they are not draining too rapidly. Gabe looks very different now. His head is smaller and shaped a little differently. In fact, for a while after the surgery, his sutures overlapped a little and created ridges on his skull. Of course, you can also see where the tube is running along his head and body.
Gabe came off the respirator and was extubated at about 9pm last night. He is on a nasal cannula at 1.5 liters per minute. He is eating by mouth again and is slowly building up to his pre-surgery volumes.
Zeke will be coming home tomorrow! He is still not using oxygen but has the occasional desat. So we will bring home oxygen and a monitor.
Thursday, May 12, 2011
9 Weeks, 6 Days (GA: 37 Weeks)
We are sitting in the surgery waiting room right now while Gabe is getting his shunt placed. Dr. Riva-Cambrin is performing the operation. I say we, but the truth is that Nanette stepped over to University Hospital to feed Zeke. The operation is expected to take 90 minutes. It is quite remarkable to us that this procedure is the first surgery that either twin has needed.
We need to make some corrections to the last post. The person who spoke with the neurosurgeon and wants to remain anonymous misunderstood the description of the shunt. There is, in fact, only one tube placed. There is a cut behind the ear where the lower tube and the upper tube are connected.
Zeke is now breathing room air and is doing well with this change. His face is now free of all tubes. He has had about half a dozen desats in the last 24 hours, but he has not had any bradycardia. So he remains on room air. We are hopeful that when he comes home he will not need oxygen and monitors. Both babies have been doing very well nursing as well as eating from a bottle.
Tuesday, May 10, 2011
9 Weeks, 4 Days (GA: 37 Weeks)
From the discussions today concerning Gabe's hydrocephalus, it has become apparent to us that his surgery is a pretty certain and necessary event. The CT scan tomorrow will be the necessary "pre-scan" prior to surgery so they know where to place the shunt. Actually, there will be two shunt tubes placed in Gabe. Both start at the top of the head with one terminating behind the ear and the other going into the space between organs in his gut. This latter tube will have a few feet extra to allow for his growth in the coming years. The neurosurgeon told us that he and Gabe would become good friends owing to all the follow up visits Gabe will need the rest of his life.
We are very fortunate that Gabe did not require the reservoir surgery a few weeks ago in a few ways: First, a reservoir is only temporary and he would have eventually needed a second surgery to place a shunt. But now he is big enough to get a shunt in the first surgery. Another reason is that when Gabe did not get surgery a few weeks ago, I went home to be with Nanette who had started hemorrhaging again. I was able to convince her to go to her doctor. That was the very day that Dr. Parker fished out some pieces of placenta which led to her recovery. Now Nanette is in good health and spirits and can be at that hospital during the surgery.
Thank you all for your prayers and fasting today. Please continue to pray for a successful surgery without further complications. There is a 60% chance that the shunt will get blocked at some point in his life and the first few years are the most susceptible.
Zeke is still scheduled to come home this weekend.
Monday, May 9, 2011
9 Weeks, 3 Days (GA: 37 Weeks)
Gabe now has both his nasal cannula and his feeding tube out. So his face is free of all accessories:
Zeke also has his feeding tube removed and is getting feedings on demand by mouth. So he gets to nurse or gets a bottle whenever he wants it. He also has a nasal cannula but his oxygen is different. It is a lower flow---in fact, the very lowest setting: 1/64 of a liter per minute---at 100% oxygen. This is the kind of oxygen that is sent home with babies (and oldies alike). And speaking of going home, Dr. King said Zeke could be discharged in a couple days. Yes, we were surprised too. However they will probably hold off the discharge until Friday or Saturday because. . .
Gabe's head is still expanding well above the expected rate. His fontanel is still full and his sutures are starting to separate. The plan is to transfer him to Primary Children's on Wed. and get a CT scan. Surgery is scheduled for Thursday morning to place a shunt in his head to drain ventrical fluid. Because Gabe is over 3kg they will skip the reservoir and go right to the shunt. The reservoir is temporary and going straight to the shunt will mean only one surgery instead of two. We will be having a family fast for Gabe starting tonight (Monday) and ending tomorrow. Of course, anyone is welcome to join us.
Gabe will likely be discharged from Primary Children's to our house by this weekend. So if all goes well, we will have both twins home with us by this time next week! Zeke will probably be on oxygen and monitors for a couple weeks after he gets discharged. So we will be able to take our favorite little beeping machine home with us. :)
Zeke also has his feeding tube removed and is getting feedings on demand by mouth. So he gets to nurse or gets a bottle whenever he wants it. He also has a nasal cannula but his oxygen is different. It is a lower flow---in fact, the very lowest setting: 1/64 of a liter per minute---at 100% oxygen. This is the kind of oxygen that is sent home with babies (and oldies alike). And speaking of going home, Dr. King said Zeke could be discharged in a couple days. Yes, we were surprised too. However they will probably hold off the discharge until Friday or Saturday because. . .
Gabe's head is still expanding well above the expected rate. His fontanel is still full and his sutures are starting to separate. The plan is to transfer him to Primary Children's on Wed. and get a CT scan. Surgery is scheduled for Thursday morning to place a shunt in his head to drain ventrical fluid. Because Gabe is over 3kg they will skip the reservoir and go right to the shunt. The reservoir is temporary and going straight to the shunt will mean only one surgery instead of two. We will be having a family fast for Gabe starting tonight (Monday) and ending tomorrow. Of course, anyone is welcome to join us.
Gabe will likely be discharged from Primary Children's to our house by this weekend. So if all goes well, we will have both twins home with us by this time next week! Zeke will probably be on oxygen and monitors for a couple weeks after he gets discharged. So we will be able to take our favorite little beeping machine home with us. :)
Thursday, May 5, 2011
8 Weeks, 6 Days (GA: 36 Weeks)
Gabe has been on room air for a day and is doing great. No nasal cannula! It is great to see him free of any oxygen support.
Gabe's fontanelle has become rather full and hard this week and his OFC has jumped about 2cm in 10 days. He is going to get a head ultrasound today to see what is going on.
I (dad) got to feed both boys last night with a bottle. Zeke took 24mL and Gabe took 45mL. Feeding them through a bottle is rather interesting. First off, the bottle is not in the normal 30-45 degree position with the baby facing up. To slow down the process and not "drown" the babies in milk, they are placed on their left side and the bottle is at 0 degrees---parallel to the ground. The drinking process consists of bringing the bottle up (to 0 degrees) until they get 3 swallows and then dropping the bottle while leaving it in their mouths so they can breath a few breaths. This process helps them remember to breath and keeps their blood oxygen saturations up. The biggest obstacle to them getting a full feeding by mouth is that they fall asleep in the middle of eating. But whatever milk they have left in the bottle then gets pumped into the stomach through the nose tube.
Gabe's fontanelle has become rather full and hard this week and his OFC has jumped about 2cm in 10 days. He is going to get a head ultrasound today to see what is going on.
I (dad) got to feed both boys last night with a bottle. Zeke took 24mL and Gabe took 45mL. Feeding them through a bottle is rather interesting. First off, the bottle is not in the normal 30-45 degree position with the baby facing up. To slow down the process and not "drown" the babies in milk, they are placed on their left side and the bottle is at 0 degrees---parallel to the ground. The drinking process consists of bringing the bottle up (to 0 degrees) until they get 3 swallows and then dropping the bottle while leaving it in their mouths so they can breath a few breaths. This process helps them remember to breath and keeps their blood oxygen saturations up. The biggest obstacle to them getting a full feeding by mouth is that they fall asleep in the middle of eating. But whatever milk they have left in the bottle then gets pumped into the stomach through the nose tube.
Wednesday, May 4, 2011
8 Weeks, 5 Days (GA: 36 Weeks)
Zeke had his first full feed by mouth yesterday. He got 44mL and although his full feeding is 45mL, the nurse counted it as a full one.
Both babies have been getting bottles at night for the last two nights. The next milestone is when they take two full feeds by mouth per shift for two days in a row. At that point, they will get to try feeding on demand.
Both babies have been getting bottles at night for the last two nights. The next milestone is when they take two full feeds by mouth per shift for two days in a row. At that point, they will get to try feeding on demand.
Sunday, May 1, 2011
8 Weeks, 2 Days (GA: 36 Weeks)
Both twins have officially doubled their birth weights. Gabe is 6lb even and Zeke is 5 lbs even. They have been doing very well in their breastfeeding. Gabe got 54mL in one feeding this morning---which is more than what they give him by tube. So he did not need any milk by tube for that feeding. If I haven't mentioned it before, they get fed every three hours.
We also found out this week that Gabe is not getting regular ultrasounds. They discussed the possibility of getting an MRI right before he gets discharged, but the doctor admitted that this would not change his care management. They were only going to do an MRI because they thought we (his parents) wanted one. It's so interesting the way this medical profession works.
Both twins got their first baths today:
We also found out this week that Gabe is not getting regular ultrasounds. They discussed the possibility of getting an MRI right before he gets discharged, but the doctor admitted that this would not change his care management. They were only going to do an MRI because they thought we (his parents) wanted one. It's so interesting the way this medical profession works.
Both twins got their first baths today:
Wednesday, April 27, 2011
7 Weeks, 5 Days (GA: 35 Weeks)
Zeke had an eye exam today and his eyes are fully vascularized! This is great news as it means his eyes are "normal" and he will not need any more eye exams in the hospital. It is ironic to us that this happened on the same day our older boy Nathan had his first eye exam and has 20/100 vision, necessitating glasses.
Both Gabe and Zeke are doing much better at nursing as well. They get measured before and after and for the last two days Zeke has gotten as much as 22mL in one feeding. This is only about a third of a normal tube feeding, but it is huge progress. Gabe got about 14mL today and set a personal record.
Both Gabe and Zeke are doing much better at nursing as well. They get measured before and after and for the last two days Zeke has gotten as much as 22mL in one feeding. This is only about a third of a normal tube feeding, but it is huge progress. Gabe got about 14mL today and set a personal record.
Monday, April 25, 2011
7 Weeks, 3 Days (GA: 35 Weeks)
Progress continues to be slow, but constant. Yesterday, Nanette got to put the twins together again:
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| Reunited! |
Thursday, April 21, 2011
6 Weeks, 6 Days (GA: 34 Weeks)
The nursing is coming along slowly. Yesterday we thought the boys did pretty well. The nurse gave them "credit" for drinking 10mL. So the tube-fed portion of their meal was 10mL less than normal. But Nanette thought she may have delivered as much as 30mL.
So after the moderate, yet unquantified, success of her nursing attempt, Nanette was worried that the babies' tummies would explode when the nurse gave them the rest of their meal by tube. The milk is forced into the stomach over a period of 30-45 minutes using a large syringe infusion pump so Nanette was really worried about those little stomachs literally bursting.
The only way to really tell how much milk they get when nursing is by using a nursing scale. It is a highly accurate weight scale used to measure a baby before and after nursing to see how much weight was gained. Each gram is counted as one milliliter of milk.
Well, today all of her fears were alleviated. She used the nursing scale and discovered that each baby had received about 2mL, or less than half a teaspoon. Suffice it to say, Nanette is no longer worried about exploding stomachs.
The occupational therapist tells us that the behavior of the twins is normal for their age and history of prematurity. The doctor still gives an expected discharge date of around their original due date (end of May).
One note on Gabe: He had his follow up eye exam this week and he has stage 2 ROP in zone 3. It is still not too concerning; he will get another follow up exam in a couple weeks. One more note: Dr. Chan told us that Gabe's head ultrasounds look "encouraging". He expects the ventricles to decrease in size over time.
So after the moderate, yet unquantified, success of her nursing attempt, Nanette was worried that the babies' tummies would explode when the nurse gave them the rest of their meal by tube. The milk is forced into the stomach over a period of 30-45 minutes using a large syringe infusion pump so Nanette was really worried about those little stomachs literally bursting.
The only way to really tell how much milk they get when nursing is by using a nursing scale. It is a highly accurate weight scale used to measure a baby before and after nursing to see how much weight was gained. Each gram is counted as one milliliter of milk.
Well, today all of her fears were alleviated. She used the nursing scale and discovered that each baby had received about 2mL, or less than half a teaspoon. Suffice it to say, Nanette is no longer worried about exploding stomachs.
The occupational therapist tells us that the behavior of the twins is normal for their age and history of prematurity. The doctor still gives an expected discharge date of around their original due date (end of May).
One note on Gabe: He had his follow up eye exam this week and he has stage 2 ROP in zone 3. It is still not too concerning; he will get another follow up exam in a couple weeks. One more note: Dr. Chan told us that Gabe's head ultrasounds look "encouraging". He expects the ventricles to decrease in size over time.
Tuesday, April 19, 2011
6 Weeks, 4 Days (GA: 34 Weeks)
Quick update today.
Gabe weighs 2290 grams (5 lb. 2 oz.). He is in a crib and is back on a nasal cannula at 1 liter/minute. The doctor put him back on caffeine for a day but then they decided against it the next day at rounds.
Zeke weighs 1865 grams (4 lb. 2 oz.). He is also in a crib now and still has his nasal cannula.
Both boys are feeding a little bit by nursing. A little bit is say, 5 minutes. Then they get the rest of their meals by tube.
Gabe weighs 2290 grams (5 lb. 2 oz.). He is in a crib and is back on a nasal cannula at 1 liter/minute. The doctor put him back on caffeine for a day but then they decided against it the next day at rounds.
Zeke weighs 1865 grams (4 lb. 2 oz.). He is also in a crib now and still has his nasal cannula.
Both boys are feeding a little bit by nursing. A little bit is say, 5 minutes. Then they get the rest of their meals by tube.
Saturday, April 16, 2011
6 Weeks, 1 Day (GA: 34 Weeks)
Gabe has made some good progress. He is back in the crib again (after a brief return to an isolette) and he is not getting constant oxygen. So he does not have a nasal canulla in his nose anymore. The truth is, it is sitting nearby at 1/4 liter/minute and the nurses throw it on his nose on occasion. For example, he had the hiccups today and just didn't want to breath regularly so they put that on to help him stay saturated. Also, when he tries to breastfeed he gets a little extra help. But while he is in his crib he is breathing room air just like the rest of us.
Several people told me that they really liked the video of Gabe---even though it was of such a poor quality. Our real camcorder is on the fritz, but here is another attempt with our normal camera. It is a huge improvement over the cell phone.
Zeke is also doing well. He still gets oxygen and is in an isolette. But he weighed 1780 grams last night so the nurse hopes that he will be transferred to a crib tonight. They usually wait until a baby is 1800 grams before they allow a crib.
I also shot a video of Zeke:
Last night we stayed the night in a hotel in Salt Lake. I had dozed off and I half heard Nanette going in and out of the room and calling the front desk on the phone and then going in and out again. I finally woke up enough to ask what she was doing. She wanted to get ice so she could keep the milk she pumped in the night cold. "Why don't you just use the fridge in our room?" I asked. It's so good to see Nanette laugh like that. Funny thing is, when we left in the morning we forgot the milk anyway. Oh well, we still have hundreds of bottles in our freezer.
Several people told me that they really liked the video of Gabe---even though it was of such a poor quality. Our real camcorder is on the fritz, but here is another attempt with our normal camera. It is a huge improvement over the cell phone.
Zeke is also doing well. He still gets oxygen and is in an isolette. But he weighed 1780 grams last night so the nurse hopes that he will be transferred to a crib tonight. They usually wait until a baby is 1800 grams before they allow a crib.
I also shot a video of Zeke:
Last night we stayed the night in a hotel in Salt Lake. I had dozed off and I half heard Nanette going in and out of the room and calling the front desk on the phone and then going in and out again. I finally woke up enough to ask what she was doing. She wanted to get ice so she could keep the milk she pumped in the night cold. "Why don't you just use the fridge in our room?" I asked. It's so good to see Nanette laugh like that. Funny thing is, when we left in the morning we forgot the milk anyway. Oh well, we still have hundreds of bottles in our freezer.
Friday, April 15, 2011
6 Weeks (GA: 34 Weeks)
Today is April 15 and the boys' corrected age is 34 weeks. It is the day, you may recall, that Nanette was originally scheduled to have her c-section after her water broke. Certainly, the last 6 weeks were not as we planned them to be, but these two babies have been so wonderful to have here with us.
Zeke and Gabe are now both down to 1/2 liter of oxygen per minute. Zeke is completely off of caffeine and Gabe's was cut to half a couple days ago. So except for vitamins, Zeke is completely off of all medicines. Zeke had a follow up eye exam and he has stage 1 retinopathy of prematurity (ROP) in zone 3. Apparently, this diagnosis is not too bad, stage 1 being rather minor, and zone 3 being in the periphery area of the eyes.
Zeke and Gabe are now both down to 1/2 liter of oxygen per minute. Zeke is completely off of caffeine and Gabe's was cut to half a couple days ago. So except for vitamins, Zeke is completely off of all medicines. Zeke had a follow up eye exam and he has stage 1 retinopathy of prematurity (ROP) in zone 3. Apparently, this diagnosis is not too bad, stage 1 being rather minor, and zone 3 being in the periphery area of the eyes.
Nanette has been commuting to the NICU every day this week to work on nursing the twins. They have made some progress, but it is going slowly. It's a demanding role for Nanette since she has to essentially nurse twice: once with the pump to get all the milk out and then a second time to get the boys some practice. It will be nice when a session of nursing the babies can be the real deal.
Wednesday, April 13, 2011
5 Weeks, 5 Days, (GA: 33 Weeks)
Gabe and Zeke are doing great! This week Nanette has been spending a lot of time at the NICU working to get the babies to learn how to nurse. We were a bit worried about Gabe because on Monday he showed no interest or reflex to suck. But yesterday he did some great sucking! So far both boys only get "practice runs" with the non-nutritive sucking. But next week they will probably start getting to try the real nursing experience.
I tried a video with my cell phone. Please excuse the poor quality, but here is cute little Gabe.
I tried a video with my cell phone. Please excuse the poor quality, but here is cute little Gabe.
Sunday, April 10, 2011
5 Weeks, 2 Days (GA: 33 Weeks)
Gabe and Zeke both made great progress in the last day. They are both off the hi-flow machine and are now on a regular nasal cannula at 1 liter/minute. Gabe breaths 21-23% FIO2 and Zeke gets 25-30%. With their new respiratory setup, they have a tube down their nose for feeding---it had been down their mouth with the hi-flow machine.
Gabe is out of an isolette and is in a regular crib. Of course, the NICU crib is quite different from what regular is at the local Walmart, but at least he is out in the open and is regulating his own body temperature. He does have a cozy hat, onesie, and PJs, and is wrapped up in a blanket.
Nanette held each baby for about an hour today and even tried the non-nutritive sucking with Zeke for the first time, even though the OT (occupational therapist) was not there. Zeke's mouth is so tiny and her---shall we say---equipment is so large that the poor kid just can't get the whole thing in his mouth. But the OTs have expertise in getting premies to start nursing so we have great hopes that it will work out. The plan is to try more non-nutritive sucking with each boy this week with the OT actually there.
Gabe is out of an isolette and is in a regular crib. Of course, the NICU crib is quite different from what regular is at the local Walmart, but at least he is out in the open and is regulating his own body temperature. He does have a cozy hat, onesie, and PJs, and is wrapped up in a blanket.
Nanette held each baby for about an hour today and even tried the non-nutritive sucking with Zeke for the first time, even though the OT (occupational therapist) was not there. Zeke's mouth is so tiny and her---shall we say---equipment is so large that the poor kid just can't get the whole thing in his mouth. But the OTs have expertise in getting premies to start nursing so we have great hopes that it will work out. The plan is to try more non-nutritive sucking with each boy this week with the OT actually there.
Saturday, April 9, 2011
5 Weeks, 1 Day (GA: 33 Weeks)
They boys are still doing well. We found out that Zeke had his third and final head ultrasound and all was normal. He will not get any more routine head ultrasounds. He no longer has an IV and his feeds are at 30mL every feed. He is getting a slight calorie supplement to help him gain weight. Both Zeke and Gabe are on a hi-flow machine with 2 liters of oxygen per minute.
Gabe is off his reflux/ulcer medicine. So now the only drug both he and Zeke are getting is caffeine. Gabe is also getting vitamins with iron since his hematocrit is still low at 28%. Gabe's head is still showing normal growth and his fontanelle remains soft. This is great news since it continues to show that his enlarged ventricles do not appear to be related to hydrocephalus. He will get his next head ultrasound on Monday. Also, Gabe had his first eye exam and his vessels are normal for his age.
Nanette continues to improve and is getting more and more strength every day. She held both boys with skin-to-skin contact for about an hour each yesterday. Skin-to-skin means that Nanette wears a hospital gown from the waist up and the boys rest on her bare chest. Next week we will start the process of teaching the boys how to nurse. The first step will be a non-nutritive feed (post breast pumping) where the breast is used essentially as a binky. It just gets the babies used to the idea of eating by mouth.
Gabe is off his reflux/ulcer medicine. So now the only drug both he and Zeke are getting is caffeine. Gabe is also getting vitamins with iron since his hematocrit is still low at 28%. Gabe's head is still showing normal growth and his fontanelle remains soft. This is great news since it continues to show that his enlarged ventricles do not appear to be related to hydrocephalus. He will get his next head ultrasound on Monday. Also, Gabe had his first eye exam and his vessels are normal for his age.
Nanette continues to improve and is getting more and more strength every day. She held both boys with skin-to-skin contact for about an hour each yesterday. Skin-to-skin means that Nanette wears a hospital gown from the waist up and the boys rest on her bare chest. Next week we will start the process of teaching the boys how to nurse. The first step will be a non-nutritive feed (post breast pumping) where the breast is used essentially as a binky. It just gets the babies used to the idea of eating by mouth.
Wednesday, April 6, 2011
4 Weeks, 5 Days (GA: 32 Weeks)
The boys continue to do well. Zeke is up to 27mL of milk at every feeding. Gabe is staying pretty warm in his isolette so they want to put him back in an open crib. Neither baby has had any recent As or Bs, but they do have frequent spells of blood oxygen desaturation.
The results from the lab came back on the material that Dr. Parker pulled out of Nanette's uterus last week. It was remnants of the placenta. For four weeks every doctor and nurse keep telling us that pieces of the placenta never get left in the uterus after a c-section. It made sense to us since the uterus is right in the surgeon's hands and they can do a visual inspection before they close up. After Dr. Parker saw Nanette last week he said, "It would be really unusual for them to leave placenta in a c-section, but it was the U after all!" We thought that was pretty funny. Regardless of the past, it's just nice to have Nanette starting to feel better this week.
The results from the lab came back on the material that Dr. Parker pulled out of Nanette's uterus last week. It was remnants of the placenta. For four weeks every doctor and nurse keep telling us that pieces of the placenta never get left in the uterus after a c-section. It made sense to us since the uterus is right in the surgeon's hands and they can do a visual inspection before they close up. After Dr. Parker saw Nanette last week he said, "It would be really unusual for them to leave placenta in a c-section, but it was the U after all!" We thought that was pretty funny. Regardless of the past, it's just nice to have Nanette starting to feel better this week.
Tuesday, April 5, 2011
4 Weeks, 4 Days (GA: 32 Weeks)
We had a pleasant surprise today: Gabe was moved back to University Hospital. Nanette and I showed up at the hospital right after Gabe was transferred. It turns out that the Life Flight crew was responsible for the physical transfer from Primary Children's to University. No, they did not use the helicopter to cover the 100 meters between buildings. They used the convenient sky bridge. I had never considered the walk across the sky bridge between the hospitals that perilous, but the Life Flight crew successfully crossed that bridge and got Gabe next to his brother with the greatest of ease. I can only imagine what the bill will be for this service.
Both twins are doing great. Zeke's feedings are up to 21mL every three hours. For reference, Gabe, who is at full feedings, is getting 34mL every three hours.
Nanette got to hold Gabe for the first time ever today! The nurses were so surprised that she had not held him yet, but with all her health problems she has just not been able to travel to the NICU very much in the last three weeks. Nanette and I took some pictures of the event.
Both twins are doing great. Zeke's feedings are up to 21mL every three hours. For reference, Gabe, who is at full feedings, is getting 34mL every three hours.
Nanette got to hold Gabe for the first time ever today! The nurses were so surprised that she had not held him yet, but with all her health problems she has just not been able to travel to the NICU very much in the last three weeks. Nanette and I took some pictures of the event.
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| Gabe in a rare moment without his feeding tube. |
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| Many helping hands to get the nasal cannula in the right spot. |
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| Mother and child united at last! |
Monday, April 4, 2011
4 Weeks, 3 Days (GA: 32 Weeks)
Gabe had another head ultrasound today and his ventricles are still enlarged as expected, but they had not grown further. His head is measuring 30cm, which is up half of a cm, and his fontanel is still soft. Because his weight gain has not been as high as his caregivers would like, he is back in an isolette. The hope is that he will expend less energy maintaining his body temperature while in the isolette and he can gain some weight.
The only change with Zeke is that his feedings are up to 16mL every three hours.
The only change with Zeke is that his feedings are up to 16mL every three hours.
Sunday, April 3, 2011
4 Weeks, 2 Days (GA: 32 Weeks)
Gabe is still on hi-flow of about 4 liters/minute. He continues to have several spells of apnea and bradycardia (As and Bs) per shift. His fontanel is still soft and his head is measuring 29.5cm, which is exactly what it was when he was admitted to Primary Children's last Monday. He is about 1700 grams (3lbs 12 oz) but is not gaining weight as much as he should. This evening, the NNP told me they are considering putting him back into an isolette and further increasing the calorie content of his milk (by fortifying). I took some more pictures of Gabe:
Zeke continues to progress. His feeds are up to 12mL every three hours. He is off CPAP and is on hi-flow of 2 liters/minute. He is not having any As and Bs, but does have the occasional desat on oxygen saturations. All of his cultures have come back negative so they do not believe he had a second infection after his UTI. He weighs about 1580grams (almost 3.5 lbs) and has been gaining weight appropriately for his age. In fact, he is catching up to his older brother.
Nanette is still trying to rest and recuperate. It is safe to say that her recovery remains tenuous.
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| The nurses say it is funny how Gabe sleeps with his arms above his head. I told them it must be hereditary since I do the same. |
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| I added the flash since Gabe already had his hand on his eyes. |
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| Gabe is next to a window so this is natural light. It doesn't sound that special but natural light in a NICU is rare. |
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| Zeke is also near a window. It is the only window I have seen in the NICU at University Hospital. |
Saturday, April 2, 2011
4 Weeks, 1 Day (GA: 32 Weeks)
Nanette has made steady progress and we are very hopeful that the worst is behind us. The hemorrhaging is almost entirely gone.
Yesterday I asked the nurse to find out during rounds what the plan was to get Gabe off his breathing rate support, thinking maybe we could get him down from 20 breaths/minute to 10 or 15 by the end of the day. When I called back in the afternoon he was completely off his rate and his CPAP and was only on hi-flow nasal cannula. Primary Children's apparently manages the respiratory therapy differently than University Hospital. Still, he had responded positively to the change and his number of As and Bs had been going down. Gabe's head is measuring 29.5cm and his fontanel is still soft.
One thing I believe I have not mentioned yet is that Gabe is no longer in an isolette. He is in a little bed in the open air with a heater above him that kicks in occasionally as needed.
Zeke continues to do well given his suspected infection. His urinary analysis looked OK and his tummy started to calm down again. He is still on CPAP, but does not have a rate. He is still on his antibiotics but is not showing any further signs of infection.
Yesterday I asked the nurse to find out during rounds what the plan was to get Gabe off his breathing rate support, thinking maybe we could get him down from 20 breaths/minute to 10 or 15 by the end of the day. When I called back in the afternoon he was completely off his rate and his CPAP and was only on hi-flow nasal cannula. Primary Children's apparently manages the respiratory therapy differently than University Hospital. Still, he had responded positively to the change and his number of As and Bs had been going down. Gabe's head is measuring 29.5cm and his fontanel is still soft.
One thing I believe I have not mentioned yet is that Gabe is no longer in an isolette. He is in a little bed in the open air with a heater above him that kicks in occasionally as needed.
Zeke continues to do well given his suspected infection. His urinary analysis looked OK and his tummy started to calm down again. He is still on CPAP, but does not have a rate. He is still on his antibiotics but is not showing any further signs of infection.
Thursday, March 31, 2011
3 Weeks, 6 Days (GA: 31 Weeks)
The neurosurgeon called first thing this morning to tell us that he did not think Gabe should go through with the reservoir surgery. But he told us we could have it done if we wanted to. How is that for a proposition from the specialist? A neurosurgeon who has gone through how many years of school and experience throws the final decision on a brain surgery to a couple worn-out parents who are struggling to understand what is going on with their little baby. Given all the neurosurgeon's reasons, we agreed that we will wait and see.
When I got to the hospital today and told Dr. Burshears---the doctor who showed me all the images yesterday and convinced me that Gabe needed the surgery---that the neurosurgeon did not want to do the surgery, she gave me the most surprised and frustrated look. But after the neurosurgeon spoke with Dr. Burshears they all seemed to be on the same page. The neurosurgeon did take Gabe's little beanie off and had me feel his sutures and his soft spot (fontanel). The sutures were overlapped (not separated) and the soft spot was, well, soft. Both symptoms indicate the absence of intracranial pressure. The plan now is to get an ultrasound Monday and again next Thursday. They will keep him at Primary Children's and will monitor his fontanel daily for changes. On a bright note, when the neurosurgeon showed me the images of the CT Scan and ultrasound, he mentioned in passing that Gabe's cerebellum looked normal. He said that it is typical for the cerebellum to remain undamaged with IVH/PVL, but it was nice to get a little fleeting good news for a change.
Nanette called me midday and asked me to come home immediately because her bleeding and blood clots had increased. When I got home we decided to go to her OB/GYN clinic to see Dr. Parker. She got another ultrasound and there was definitely something in her uterus, but whether it was a blood clot or "products of conception" (i.e., placenta) could not be determined. Dr. Parker suggested that Nanette get a D&C, and was ready to go the hospital right away. But then he decided to use ring forceps to see if he could pull out the offending material while there in his office. He successfully pulled out some gunk and sent it off to the lab to see what it is. He is hopeful that this stuff was the root cause of the ongoing issues with her recovery and expects Nanette to improve from here out. We hope and pray for the same thing.
Little Zeke showed some more signs of infection (distended bowels and pale color) this afternoon, so they gave him the full sepsis rundown: CBC, CRP, UA, Blood Culture, and Lumbar Puncture looking for bacteria. He is off milk again and has an Anderson tube in his stomach to pull air out. So he is on close watch tonight.
When I got to the hospital today and told Dr. Burshears---the doctor who showed me all the images yesterday and convinced me that Gabe needed the surgery---that the neurosurgeon did not want to do the surgery, she gave me the most surprised and frustrated look. But after the neurosurgeon spoke with Dr. Burshears they all seemed to be on the same page. The neurosurgeon did take Gabe's little beanie off and had me feel his sutures and his soft spot (fontanel). The sutures were overlapped (not separated) and the soft spot was, well, soft. Both symptoms indicate the absence of intracranial pressure. The plan now is to get an ultrasound Monday and again next Thursday. They will keep him at Primary Children's and will monitor his fontanel daily for changes. On a bright note, when the neurosurgeon showed me the images of the CT Scan and ultrasound, he mentioned in passing that Gabe's cerebellum looked normal. He said that it is typical for the cerebellum to remain undamaged with IVH/PVL, but it was nice to get a little fleeting good news for a change.
Nanette called me midday and asked me to come home immediately because her bleeding and blood clots had increased. When I got home we decided to go to her OB/GYN clinic to see Dr. Parker. She got another ultrasound and there was definitely something in her uterus, but whether it was a blood clot or "products of conception" (i.e., placenta) could not be determined. Dr. Parker suggested that Nanette get a D&C, and was ready to go the hospital right away. But then he decided to use ring forceps to see if he could pull out the offending material while there in his office. He successfully pulled out some gunk and sent it off to the lab to see what it is. He is hopeful that this stuff was the root cause of the ongoing issues with her recovery and expects Nanette to improve from here out. We hope and pray for the same thing.
Little Zeke showed some more signs of infection (distended bowels and pale color) this afternoon, so they gave him the full sepsis rundown: CBC, CRP, UA, Blood Culture, and Lumbar Puncture looking for bacteria. He is off milk again and has an Anderson tube in his stomach to pull air out. So he is on close watch tonight.
Wednesday, March 30, 2011
3 Weeks, 5 Days (GA: 31 Weeks)
Yesterday's trip really put Nanette out for awhile. She was not to the point of going to the hospital, but she was getting close before things started to turn around in the late afternoon.
Gabe's hydrocephalus is an interesting case. Yesterday and today different doctors and nurse practitioners tried to convince us that putting in a reservoir was necessary. Nanette and I expressed some concern and skepticism, but after viewing the most recent head ultrasound and CT scan images, I was fully persuaded and proceeded to bring Nanette to the same conclusion. I checked the OR schedule before I left the hospital and Gabe is on for 10:15am. However, I still have not signed the consent, not given a verbal to the neurosurgeon. Well, tonight the neurosurgeon called and left a message to the effect that he is not convinced that Gabe should get the reservoir due to the how his head feels (Gabe's, not the Dr.'s). Gabe's fontanel is still somewhat soft. If there were significant pressure build up in the ventricles we would expect the fontanel to bulge out more and be harder to the touch. This was one of the symptoms that had Nanette and I less convinced. But the other doctors pointed out that the size of the head (Gabe's is not increasing too abnormally) and the fontanel are only parts of the whole picture and that they particularly use the size measurements taken from the ultrasounds to determine whether the hydrocephalus needs active management.
Clinically, Gabe is doing OK. He is on CPAP with a rate to help him breathe. His hematocrit has been on the low side, around 28%. His skin is bit more mottled in the last day. He is, still, cute as a button---which reminds me: the nurse told me that she can see a lot of me in him. ;)
Zeke is back on CPAP, but does not have a rate. He is up to 14mL of milk at every feed. He had his eyes checked out for the first time today. The doctor said he has immature vessels in zone 3. This is a very normal and not worrisome result for Zeke's situation. He will continue to get eye exams every week or two.
The highlight of the day: My brother Wade and I gave each boy a blessing.
Gabe's hydrocephalus is an interesting case. Yesterday and today different doctors and nurse practitioners tried to convince us that putting in a reservoir was necessary. Nanette and I expressed some concern and skepticism, but after viewing the most recent head ultrasound and CT scan images, I was fully persuaded and proceeded to bring Nanette to the same conclusion. I checked the OR schedule before I left the hospital and Gabe is on for 10:15am. However, I still have not signed the consent, not given a verbal to the neurosurgeon. Well, tonight the neurosurgeon called and left a message to the effect that he is not convinced that Gabe should get the reservoir due to the how his head feels (Gabe's, not the Dr.'s). Gabe's fontanel is still somewhat soft. If there were significant pressure build up in the ventricles we would expect the fontanel to bulge out more and be harder to the touch. This was one of the symptoms that had Nanette and I less convinced. But the other doctors pointed out that the size of the head (Gabe's is not increasing too abnormally) and the fontanel are only parts of the whole picture and that they particularly use the size measurements taken from the ultrasounds to determine whether the hydrocephalus needs active management.
Clinically, Gabe is doing OK. He is on CPAP with a rate to help him breathe. His hematocrit has been on the low side, around 28%. His skin is bit more mottled in the last day. He is, still, cute as a button---which reminds me: the nurse told me that she can see a lot of me in him. ;)
Zeke is back on CPAP, but does not have a rate. He is up to 14mL of milk at every feed. He had his eyes checked out for the first time today. The doctor said he has immature vessels in zone 3. This is a very normal and not worrisome result for Zeke's situation. He will continue to get eye exams every week or two.
The highlight of the day: My brother Wade and I gave each boy a blessing.
Tuesday, March 29, 2011
3 Weeks, 4 Days (GA: 31 Weeks)
Nanette and I got to see our twins today. It had been awhile so it was great to see them. More importantly, much has changed and we really needed to be there to get the updates that we were just not getting over the phone. The long day had its toll on Nanette as she started to bleed heavily in the late afternoon. How hard is that for Nanette? Every time she makes a trip to see her newborn babies she is set back on her recovery.
New to us today was that Zeke has been getting treated for a urinary tract infection. That was his infection, which we had thought was still undetermined. We had asked and asked about the results of all the cultures but always got a no growth or no final report answer. Apparently, the UTI was diagnosed several days ago at which time they immediately started Zeke on the best antibiotic for that particular bacteria. We were there today to see the respiratory therapist remove Zeke's CPAP and put him on hi-flow again. He is tolerating his feedings and his bowels are moving so they have gradually increased his feeds. He is up to 10mL every three hours (he was in the mid-twenties when they stopped last week).
Following the ultrasound on Monday, Dr. Beachy and the neurosurgeon from Primary Children's decided that Gabe should get a ventricular reservoir to relieve the build up of CSF in his ventricles. This reservoir consists of a plastic tube sitting right inside one of his ventricles, the end of the tube coming to the hollow of a dime sized dome that rests just under his scalp. Pressure can then be relieved as needed by piercing the skin and the plastic dome with a tiny needle to access and draw from this "reservoir" of fluid. The plastic dome self seals after it is pierced with the needle. The reservoir is only a temporary solution: either Gabe's hydrocephalus will clear on its own in the coming weeks and months, or he will require a permanent shunt.
Gabe has been transferred to Primary Children's so he can be monitored and prepped for the surgery, which may happen as soon as Thursday. Nanette and I went to visit Gabe down there today as well. I say "down there" because Primary Children's fourth floor is connected to the atrium level of University Hospital by an enclosed skybridge. Their NICU is on the fourth floor and is the same unit where Michael, our first son, spent a couple days of his short life. It was sort of nostalgic. No, it was more anti-nostalgic, if that makes sense. Malstalgic. That sounds right. I know it doesn't exist, but that's the right word.
New to us today was that Zeke has been getting treated for a urinary tract infection. That was his infection, which we had thought was still undetermined. We had asked and asked about the results of all the cultures but always got a no growth or no final report answer. Apparently, the UTI was diagnosed several days ago at which time they immediately started Zeke on the best antibiotic for that particular bacteria. We were there today to see the respiratory therapist remove Zeke's CPAP and put him on hi-flow again. He is tolerating his feedings and his bowels are moving so they have gradually increased his feeds. He is up to 10mL every three hours (he was in the mid-twenties when they stopped last week).
Following the ultrasound on Monday, Dr. Beachy and the neurosurgeon from Primary Children's decided that Gabe should get a ventricular reservoir to relieve the build up of CSF in his ventricles. This reservoir consists of a plastic tube sitting right inside one of his ventricles, the end of the tube coming to the hollow of a dime sized dome that rests just under his scalp. Pressure can then be relieved as needed by piercing the skin and the plastic dome with a tiny needle to access and draw from this "reservoir" of fluid. The plastic dome self seals after it is pierced with the needle. The reservoir is only a temporary solution: either Gabe's hydrocephalus will clear on its own in the coming weeks and months, or he will require a permanent shunt.
Gabe has been transferred to Primary Children's so he can be monitored and prepped for the surgery, which may happen as soon as Thursday. Nanette and I went to visit Gabe down there today as well. I say "down there" because Primary Children's fourth floor is connected to the atrium level of University Hospital by an enclosed skybridge. Their NICU is on the fourth floor and is the same unit where Michael, our first son, spent a couple days of his short life. It was sort of nostalgic. No, it was more anti-nostalgic, if that makes sense. Malstalgic. That sounds right. I know it doesn't exist, but that's the right word.
Sunday, March 27, 2011
3 Weeks, 2 Days (GA: 31 Weeks)
Nanette is status quo. She improved to a certain state and has remained there for a few days now. She still gets crampy, hemorrhages, and occasionally passes clots. Although these remaining symptoms are erratic, they have not stopped. But she has not had another episode of heavy bleeding (and ER visit!) so we are hopeful that she is still progressing in the right direction.
Dad felt pretty good below the neck today. My throat is still really sore and my head hurt throughout the day, but my body is not weak and achy as it was the last couple days. I woke up this morning at 3am just soaking wet. My sleep-clouded mind thought Nanette must have poured some water on me. I had on a collared PJ top and the whole collar was soaked. Unlike the previous couple nights, I had slept peacefully; so I was surprised to wake up in such a cold sweat. After changing every scrap of clothing I was wearing and flipping my pillow over, I fell fast asleep once more. A couple hours later, I woke from a dream that someone had turned the humidifier in our HVAC system to 100 percent---essentially creating rain from the floor vent into our room. Sure enough, I was soaked again. After I told Nanette my story she reminded me that she had to change her pillow at night for the same reason the week after her c-section. I understood better that my little sickness---with it's sleepness nights, pain, fevers, chills, head and muscle aches, and weakness---is merely a small, but accurate window into what Nanette has had to put up with the last three plus weeks. My conclusion: She's more of a trooper than I am.
Gabe is still doing well. He has gained weight and is up to 1600 grams (3.5 lbs). The nurse said he in an isolette, which, althought commonly used for multiple types of incubators, is a step down from the Giraffe incubator he has been in. It means he is regulating his body temperature better and is progressing toward an open-top crib. He needs air temp of 30degC right now and once he is down a couple more degrees he can get the crib.
Gabe will get another head ultrasound tomorrow to check on his brain and CSF in his ventricles. His head (Occipitofrontal Circumference---OFC) grew a little more the last day or two, but not as much as earlier in the week. However, note that volume in a sphere is proportional to the cube of the radius---so a linear increase in volume will not yield a linear increase in circumference. For a constant increase in fluid volume, the circumference would only increase as a cubed root. In short, a small increase in Gabe's measured head size will mean a much larger (cubed) increase in total volume in his head; so we should expect the daily/weekly OFC increases to decrease even if the fluid continues to build up. (That was a long way of saying, don't get your hopes up yet!)
The nurse, Jenna, told us today that Gabe is so cute (the word she really used is, "sooooooooooooooo", but that seemed too juvenile to write shortly under a discussion of cubed roots). It helps to hear this description since it's been a long time since Nanette and I have seen the twins: 10 days for Nanette and 5 for myself.
Zeke has started back on milk again. He is at 7mL today and is tolerating it. He is back on CPAP at 5cm of pressure after two grade 4 As and Bs (apnea and bradycardia) last night. Grade 4 is where the nurse has to manually pump air into his lungs. The nurse tonight said that they have ordered some blood to give to him, possibly in the morning. His hematocrit has been low and they will check it again tomorrow. Zeke appears to be doing OK for having an infection. He has not been nearly as bad off as Gabe was when he had sepsis (there I go again, comparing my twins---everyone says not to do that!). Zeke is up to 1330 grams (2lb 15 oz., which was Gabe's birth weight).
We just called the NICU and we are happy to report that the operator has smiled on us and the whole hospital-calling population: normal and peaceful hold music has been restored.
Dad felt pretty good below the neck today. My throat is still really sore and my head hurt throughout the day, but my body is not weak and achy as it was the last couple days. I woke up this morning at 3am just soaking wet. My sleep-clouded mind thought Nanette must have poured some water on me. I had on a collared PJ top and the whole collar was soaked. Unlike the previous couple nights, I had slept peacefully; so I was surprised to wake up in such a cold sweat. After changing every scrap of clothing I was wearing and flipping my pillow over, I fell fast asleep once more. A couple hours later, I woke from a dream that someone had turned the humidifier in our HVAC system to 100 percent---essentially creating rain from the floor vent into our room. Sure enough, I was soaked again. After I told Nanette my story she reminded me that she had to change her pillow at night for the same reason the week after her c-section. I understood better that my little sickness---with it's sleepness nights, pain, fevers, chills, head and muscle aches, and weakness---is merely a small, but accurate window into what Nanette has had to put up with the last three plus weeks. My conclusion: She's more of a trooper than I am.
Gabe is still doing well. He has gained weight and is up to 1600 grams (3.5 lbs). The nurse said he in an isolette, which, althought commonly used for multiple types of incubators, is a step down from the Giraffe incubator he has been in. It means he is regulating his body temperature better and is progressing toward an open-top crib. He needs air temp of 30degC right now and once he is down a couple more degrees he can get the crib.
Gabe will get another head ultrasound tomorrow to check on his brain and CSF in his ventricles. His head (Occipitofrontal Circumference---OFC) grew a little more the last day or two, but not as much as earlier in the week. However, note that volume in a sphere is proportional to the cube of the radius---so a linear increase in volume will not yield a linear increase in circumference. For a constant increase in fluid volume, the circumference would only increase as a cubed root. In short, a small increase in Gabe's measured head size will mean a much larger (cubed) increase in total volume in his head; so we should expect the daily/weekly OFC increases to decrease even if the fluid continues to build up. (That was a long way of saying, don't get your hopes up yet!)
The nurse, Jenna, told us today that Gabe is so cute (the word she really used is, "sooooooooooooooo", but that seemed too juvenile to write shortly under a discussion of cubed roots). It helps to hear this description since it's been a long time since Nanette and I have seen the twins: 10 days for Nanette and 5 for myself.
Zeke has started back on milk again. He is at 7mL today and is tolerating it. He is back on CPAP at 5cm of pressure after two grade 4 As and Bs (apnea and bradycardia) last night. Grade 4 is where the nurse has to manually pump air into his lungs. The nurse tonight said that they have ordered some blood to give to him, possibly in the morning. His hematocrit has been low and they will check it again tomorrow. Zeke appears to be doing OK for having an infection. He has not been nearly as bad off as Gabe was when he had sepsis (there I go again, comparing my twins---everyone says not to do that!). Zeke is up to 1330 grams (2lb 15 oz., which was Gabe's birth weight).
We just called the NICU and we are happy to report that the operator has smiled on us and the whole hospital-calling population: normal and peaceful hold music has been restored.
Saturday, March 26, 2011
3 Weeks, 1 Day (GA: 31 Weeks)
Last week when Eliza got strep throat, the nurses assured us that since adults don't stick their fingers in their mouths, we would be pretty safe against it. Apparently, they underestimated me. I came down with strep yesterday and spent all but a few minutes of the day in my bed. I was and still am wiped out. The night before I came down with it, I had told Eliza, "I hope I get sick so you can be my nurse too." Eliza (and Bella) have been wonderful nurses, but suffice it to say that my stated hope, once realized, was not worth the blessing of my two little nurses.
Yesterday, Gabe got a CT scan at Primary Children's and the neurologists decided to wait and not do anything right now. Gabe's head measurement was 29 cm, up from 27.5 cm on Monday. His sutures are separated as well. So it looks like hydrocephalus, but they will wait a little longer before they intervene. They will likely put a reservoir in. This is a tube that goes into the ventricles that allows them to drain off fluid when needed.
We still don't have final culture results for Zeke. He is doing pretty well clinically. He is on hi-flow and still getting all his fluids by IV. We will just have to wait and see how he does in the next few days.
Yesterday, Gabe got a CT scan at Primary Children's and the neurologists decided to wait and not do anything right now. Gabe's head measurement was 29 cm, up from 27.5 cm on Monday. His sutures are separated as well. So it looks like hydrocephalus, but they will wait a little longer before they intervene. They will likely put a reservoir in. This is a tube that goes into the ventricles that allows them to drain off fluid when needed.
We still don't have final culture results for Zeke. He is doing pretty well clinically. He is on hi-flow and still getting all his fluids by IV. We will just have to wait and see how he does in the next few days.
Thursday, March 24, 2011
2 Weeks, 6 Days (GA: 30 Weeks)
We heard a women's voice in our home at about midnight last night. Our phone ringers were off or out of earshot and the voice was from our answering machine. It was Diane from the NICU telling us that it was "not an emergency" but they had made some changes with Zeke and we could just call back when we woke up in the morning. I consider a phone call at midnight, being such a rare occurence, a definite emergency. So we called back right away and put it on speaker phone. We were put on hold to the most unbelievable music. It was quite with a couple discordant strings, interspersed by what sounded like gunshots. Yes, gunshots! Sometimes the lone shot; sometimes the rapid succession of many gunshots as though the composer were in a genuine shoot out at the time of composition. Nanette believes the hold music was malfunctioning, but based on the other odd hold music we have been subjected to, I hold that it was intentional. It is comical to us now, but at the time I thought we had entered the twilight zone: My wife and I were awake at midnight listening to the sound of gunshots as we waited to hear about a non-emergency situation from the ICU my premature twins are in. We were on hold for several minutes.
Finally, we were talking to Diane. Zeke was having more trouble breathing and had had several As & Bs---apnea and bradycardia (dip in the heart rate below 100, it is normally about 160-170). His tummy was distended and his bowels were not moving. All of these are symptoms of an infection in a premie. Diane told us that they took blood to do a blood culture and had put him back on CPAP to help him breath. They put IVs in, started antibiotics, and stopped his feeds . They also put a larger tube into his stomach so they can draw out any excess fluids. Today they took samples of urine and spinal fluid to check for infections. His spinal fluid showed a slightly increased white blood cell count, which can be an indicator of meningitis.
Gabe had another head ultrasound today to monitor the CSF in his ventricles, and although they could not tell us the official results, they did say his ventricles were further enlarged and they asked for consent to get him a CT scan tomorrow at Primary Children's.
Nanette continues to improve.
Finally, we were talking to Diane. Zeke was having more trouble breathing and had had several As & Bs---apnea and bradycardia (dip in the heart rate below 100, it is normally about 160-170). His tummy was distended and his bowels were not moving. All of these are symptoms of an infection in a premie. Diane told us that they took blood to do a blood culture and had put him back on CPAP to help him breath. They put IVs in, started antibiotics, and stopped his feeds . They also put a larger tube into his stomach so they can draw out any excess fluids. Today they took samples of urine and spinal fluid to check for infections. His spinal fluid showed a slightly increased white blood cell count, which can be an indicator of meningitis.
Gabe had another head ultrasound today to monitor the CSF in his ventricles, and although they could not tell us the official results, they did say his ventricles were further enlarged and they asked for consent to get him a CT scan tomorrow at Primary Children's.
Nanette continues to improve.
Wednesday, March 23, 2011
2 Weeks, 5 Days (GA: 30 Weeks)
Last night we were close to going to the ER again with more bleeding, but after calling Dr. Parker and getting a couple prescriptions, we avoided it. Nanette is feeling much better today. Eliza has been so cute these last couple days being a nurse to her mother. She saw the bedside manner of nurses when she visited Nanette in the hospital for many weeks and imitates them precisely. She knocks on the door, walks in, and asks, "Is there anything I can get you?" Last night she did not want to go to bed at bedtime and said, "How can I go to sleep when I'm thinking about . . ." Nanette assured her that she was going to get better.
Zeke is doing well. He is off the hi-flow air and is now getting air straight from the wall. It is still about 30% oxygen. Dad got to hold him for about 45 minutes while he (i.e., Zeke) was getting his milk.
Gabe is off his CPAP. He has been wearing a fabric helmet to help keep his CPAP canulla in place. But since it is gone, I took some pictures. Here's the best one:
As all the nurses keep telling me: He is a cutie!
Dr. Beacher and the fellow, Dr. Lang, showed me the images from all three of the head ultrasounds. The first shows a dime sized whiter spot in Gabe's brain next to the each ventricle. This is the PVL, or the dead white matter in Gabe's brain. His ventricles were not symmetrical and were a bit loose around the edges---not evenly round as they should be. They also pointed out areas of old bleeding.
The images from the last week showed that the ventricles were notably enlarged. The ultrasound from Monday showed that the ventricles were significantly enlarged. The images also showed a better picture of the extent of his PVL.
Let me back up a little. An ultrasound image is a measure of density. Light and dark images represent more or less dense matter. When the cells die due to lack of blood, they are not necessarily echogenic, meaning that they may not have a sufficient density difference from the surrounding matter to show up in the image.
As the dead cells disintegrate and get absorbed back into the body, fluid-filled cysts remain. These cysts show up as smaller black holes in the ultrasound image. Gabe has many of these black holes in his brain. Because of the significant white matter loss, the doctors are fairly sure that we can expect Gabe to have several developmental issues. What these issues will be only time will tell.
Getting back to the enlarged ventricles: The excess fluid in his brain may be due to 1) hydrocephalus caused by a blockage in the cerebrospinal fluid draining or 2) fluid back-fills the loss of pressure caused by the brain cells disintegrating. The doctors are unsure which is causing Gabe's expanding ventricles. Dr. Beachy told me it is 50/50 at this point. They will do another ultrasound Thursday and then probably do a CT Scan thereafter.
Zeke is doing well. He is off the hi-flow air and is now getting air straight from the wall. It is still about 30% oxygen. Dad got to hold him for about 45 minutes while he (i.e., Zeke) was getting his milk.
Gabe is off his CPAP. He has been wearing a fabric helmet to help keep his CPAP canulla in place. But since it is gone, I took some pictures. Here's the best one:
As all the nurses keep telling me: He is a cutie!
Dr. Beacher and the fellow, Dr. Lang, showed me the images from all three of the head ultrasounds. The first shows a dime sized whiter spot in Gabe's brain next to the each ventricle. This is the PVL, or the dead white matter in Gabe's brain. His ventricles were not symmetrical and were a bit loose around the edges---not evenly round as they should be. They also pointed out areas of old bleeding.
The images from the last week showed that the ventricles were notably enlarged. The ultrasound from Monday showed that the ventricles were significantly enlarged. The images also showed a better picture of the extent of his PVL.
Let me back up a little. An ultrasound image is a measure of density. Light and dark images represent more or less dense matter. When the cells die due to lack of blood, they are not necessarily echogenic, meaning that they may not have a sufficient density difference from the surrounding matter to show up in the image.
As the dead cells disintegrate and get absorbed back into the body, fluid-filled cysts remain. These cysts show up as smaller black holes in the ultrasound image. Gabe has many of these black holes in his brain. Because of the significant white matter loss, the doctors are fairly sure that we can expect Gabe to have several developmental issues. What these issues will be only time will tell.
Getting back to the enlarged ventricles: The excess fluid in his brain may be due to 1) hydrocephalus caused by a blockage in the cerebrospinal fluid draining or 2) fluid back-fills the loss of pressure caused by the brain cells disintegrating. The doctors are unsure which is causing Gabe's expanding ventricles. Dr. Beachy told me it is 50/50 at this point. They will do another ultrasound Thursday and then probably do a CT Scan thereafter.
Tuesday, March 22, 2011
2 Weeks, 4 Days (GA: 30 Weeks)
Nanette is back home from her two-night stay at the hospital. After getting two units of blood, her hematocrit was up to 28.5%. Each unit should bring the percentage up about 3 points so we can deduce that she was as low as 22.5%. She is still not feeling great and will be spending this week recovering in bed.
Sunday night was pretty crazy for our family. Here is how spread out we were that night:
Mom and Dad: Timpanogos Hospital
Nathan, Daniel, and Eliza: At home in Cedar Hills
Bella and Sam: In Centerville with Aunt Becky and Uncle Russ
Gabe and Zeke: at the NICU
We also had several family members treated by a doctor within the last week: Nanette, Daniel, Eliza, Gabe, and Zeke.
We are so grateful for all the help we have received from family and friends in the last days and weeks! I cannot imagine how much more crazy this would all be without that help.
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| Nanette's new blood . . . |
Sunday night was pretty crazy for our family. Here is how spread out we were that night:
Mom and Dad: Timpanogos Hospital
Nathan, Daniel, and Eliza: At home in Cedar Hills
Bella and Sam: In Centerville with Aunt Becky and Uncle Russ
Gabe and Zeke: at the NICU
We also had several family members treated by a doctor within the last week: Nanette, Daniel, Eliza, Gabe, and Zeke.
We are so grateful for all the help we have received from family and friends in the last days and weeks! I cannot imagine how much more crazy this would all be without that help.
Sunday, March 20, 2011
2 Weeks, 2 Days (GA: 29 Weeks)
It has been a very eventful 24 hours. Nanette started to hemorrhage last night and after consulting with the OB doctor on call, Dr. Allen, she decided to go to the ER at Timpanogos Hospital. It was a smart decision. She continued to pass a lot of blood and several blood clots (each the approximately the size of a lime). The ultrasound did not show any placental material remaining in her uterus. Dr. Allen thought the bleeding may be due to an infection. But quite frankly, no one has a good answer to why she is bleeding so heavily. Her hematocrit was 30 when she first came in, up from 23 after her c-section (a good sign that her body has been busy making red blood cells), but dropped to the mid-twenties in just a few hours. This morning she blacked out while going to the restroom so the doctor decided to give her two units of blood. She also got a CT scan to help the doctors figure out what is going on inside her body.
On a brighter note, Dad spent time with the twins Saturday afternoon. The nurse let him hold both Gabe and Zeke for about a half hour each. It was wonderful.
The only change in their care today is that both of their feedings are up about 20%.
Zeke struck a cute pose yesterday with his little hand under his head:
On a brighter note, Dad spent time with the twins Saturday afternoon. The nurse let him hold both Gabe and Zeke for about a half hour each. It was wonderful.
The only change in their care today is that both of their feedings are up about 20%.
Zeke struck a cute pose yesterday with his little hand under his head:
Saturday, March 19, 2011
2 Weeks, 1 Days (GA: 30 Weeks)
The twins did well yesterday. They both had their PIC lines removed since they are getting all their fluids by milk. Gabe and Zeke are getting 21mL and 20mL respectively, every three hours.
Gabe still has some small blood specs in his residuals. The residual is how much fluid is left in their tummies prior to their next meal. Usually they have just a couple milliliters, but if they more than 10% of the last feeding or if the residual is full of bile, the nurse will pull it out of the stomach and throw it away. Otherwise, the residual is pushed back into the stomach. (Except for the clear disadvantage of a tube perpetually down the nose, this residual checking idea would be a great weight loss plan for me: eat all the chocolate cake I want now, and then pull it back out through my tube in a couple hours. Brilliant!) Because Gabe has had blood specs in his residuals for a few days they think he may have a small stress ulcer. So Gabe is going to get a couple medicines (e.g., Zantac) for his little ulcer.
Gabe still has some small blood specs in his residuals. The residual is how much fluid is left in their tummies prior to their next meal. Usually they have just a couple milliliters, but if they more than 10% of the last feeding or if the residual is full of bile, the nurse will pull it out of the stomach and throw it away. Otherwise, the residual is pushed back into the stomach. (Except for the clear disadvantage of a tube perpetually down the nose, this residual checking idea would be a great weight loss plan for me: eat all the chocolate cake I want now, and then pull it back out through my tube in a couple hours. Brilliant!) Because Gabe has had blood specs in his residuals for a few days they think he may have a small stress ulcer. So Gabe is going to get a couple medicines (e.g., Zantac) for his little ulcer.
Thursday, March 17, 2011
1 Week, 6 Days (GA: 29 Weeks)
The Newborn ICU is a special place, but often it's pretty intense. There are several monitors that constantly set off beeping and flashing alarms. Alarms go off a lot! Babies move around a lot, sensors fall off, and the normal variation of any parameter often goes above or below the thresholds. With two premature babies in our room---and several rooms within earshot---it is a rare minute when no alarms are heard. After a day in the NICU, Nanette and I feel like this:
Wednesday, March 16, 2011
1 Week, 5 Days (GA: 29 Weeks)
The twins did well today. Both of their feedings are up to 14 mL every three hours.
Zeke is back on a little respiratory help. It is called "hi-flow" and is a higher volume of humidified air through his nasal cannula. He started at 3 liters/minute but is already down to 2 liters/minute.
Tuesday, March 15, 2011
1 Week, 4 Days (GA: 29 Weeks)
Nanette continues to do better and better each day. Last night, for the first time, she did not take any pain medicine in the middle of the night. She just got a new breast pump and it sucks, as it should. Nanette is a pumping maniac---every three hours all day and night long. The clear highlight of the day (probably the highlight of the whole experience so far): Nanette had some skin-to-skin time with Zeke today. It’s pretty cool snuggling with a 2 lb human being.
Gabe was put back on CPAP today because he was working a little too hard to breath and his lungs were not fully inflating. His breathing is better with that little added help (never undervalue a little positive pressure!). Dr. Chan gave us the results of Gabe’s follow-up cranial ultrasound. Gabe's lateral ventricles are enlarged (ventriculomegaly) and he has been diagnosed with mild hydrocephalus ("water on the brain"). This can cause further brain damage and will be monitored each week with head ultrasounds. It is likely that the enlarged ventricles are due to a slight blockage in the cerebrospinal fluid (CSF) absorption due to Gabe's previous brain bleeding (posthemorrhagic hydrocephalus). Oftentimes, this will resolve spontaneously as the old blood (causing the blockage) breaks down. The enlarged ventricles could be caused by other things as well. If his hydrocephalus worsens, a shunt can be added to drain excess CSF when Gabe is older (at least 2kg).
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| First Contact: Zeke and Mom. |
Zeke is still a champ. He had a 1 day trial of a formula that has partially broken down proteins that are soft on his stomach. He had been irritable and the doctor wanted to see if his irritability was due to his bowels having trouble with breast milk. They also gave him Versed to calm him down. We told Zeke’s care providers that we have had several babies with colic but we never resorted to formula or sedatives. As far as we could tell, this information seemed irrelevant to those experts. He is back on breast milk again today and doing great. He loved it when his mother held him. His oxygen saturation shot right up and we had to turn his FIO2 down.
Kids know how to get to the heart of the matter. Yesterday the 11-year old son of our good neighbors summed up the situation perfectly when he said, "It's great that both of your twins are still living."
Sunday, March 13, 2011
1 Week, 2 Days (GA: 29 Weeks)
It is almost shift change and the nurse started doing her charting so I thought I better do my equivalent. . .
It has been so awesome for us and the kids to be home together after 6 weeks apart. Our girls called Nanette "her majesty" and everyone wanted to sit on her lap, next to her chair, or lay down by her. Samuel asked his dad if he would be going to his home. "This is my home, Sam." "No, this is my home, Dad." It was funny, but sad too.
I misunderstood what the nurse told me over the phone yesterday about Gabe's ventilator. Yesterday, his rate was down to zero (no additional breaths given), but he still had a little positive pressure using a ventilator machine. Today he was completely removed from positive pressure and has the same setup as Zeke. For accuracy's sake, I would appreciate it if everyone can erase yesterday's joy over his breathing progress and move it to today. Nanette and I spoke with Dr. Chan about how much progress Gabe has made in the last week. Remember that a week ago we were told that he had a pretty good chance of not living another 24 hours. Today, he is a totally different kid. Last week when Dr. Chan told us of Gabe's PVL he told us Gabe had a 80-90% likelihood of developing CP. After seeing Gabe's progress this week, Dr. Chan said he would cut that likelihood in half. Fantastic news! Since the CPAP is off, I took some pictures. You may think that Gabe looks a lot like Zeke in this picture. They get that all the time since they are identical twins. (Most people say there's a clear resemblance in the tubes . . .)
Zeke is doing great still. Mom got to change his diaper. He had slight heart murmur so he will get an echo cardiogram tomorrow. Here's a picture of Zeke today.
Both boys will get a follow up head ultrasound tomorrow.
It has been so awesome for us and the kids to be home together after 6 weeks apart. Our girls called Nanette "her majesty" and everyone wanted to sit on her lap, next to her chair, or lay down by her. Samuel asked his dad if he would be going to his home. "This is my home, Sam." "No, this is my home, Dad." It was funny, but sad too.
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| Nanette falls asleep putting the girls to bed. |
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| Smothered in joy. |
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| Gabe right after getting off the CPAP. |
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| Zeke trying to get that eye open. Notice the hand in motion. |
Saturday, March 12, 2011
1 Week, 1 Day (GA: 29 Weeks)
Nanette was discharged yesterday and it was a sad moment saying goodbye to the staff at the hospital. There was no receipt under the door on our last morning and we were surprised to find that hospitals do not have express checkout. We asked them to send us the bill at their earliest convenience. Nanette slept at her own home last night. It was a great night's sleep. She only got up once to get drugs, wait until they kicked in, and then pumped milk. She has rested plenty today but still requires plenty of narcotics.
The twins are out of room 1 of the NICU. Room 1 is sort of like the ER of the NICU. New deliveries and transfers go directly to room 1 and the babies are usually pretty sick and/or premature. Each baby has a dedicated nurse. They are now in room 2 and share one nurse.
After getting down to 10 assisted breaths per minute yesterday, Gabriel came of his ventilator today. His FIO2 is at 21% and he is doing great with his unassisted breathing. He did get a PICC line (peripherally inserted central catherter) last night at 2am. This is a small tube that is inserted in his arm but is pushed up past his shoulder until it is near a central vein. This allows for fluids and drugs to be administered for a long time without exhausting his peripheral veins. For example, Nanette had to have an IV inserted three times in the four days she was on antibiotics this week because the veins get burned and wear down. They put this new line in because they took out the umbilical lines they had been using because the risk of infection is high if the umbilical lines stay in beyond a week or so.
Zeke is up to 60mL/kg/day on his feedings. If he can get up to 120mL/kg/day he will not need to get the PICC line. He is stooling well (TMI?). And his NIO2 is at 33%.
The twins are out of room 1 of the NICU. Room 1 is sort of like the ER of the NICU. New deliveries and transfers go directly to room 1 and the babies are usually pretty sick and/or premature. Each baby has a dedicated nurse. They are now in room 2 and share one nurse.
After getting down to 10 assisted breaths per minute yesterday, Gabriel came of his ventilator today. His FIO2 is at 21% and he is doing great with his unassisted breathing. He did get a PICC line (peripherally inserted central catherter) last night at 2am. This is a small tube that is inserted in his arm but is pushed up past his shoulder until it is near a central vein. This allows for fluids and drugs to be administered for a long time without exhausting his peripheral veins. For example, Nanette had to have an IV inserted three times in the four days she was on antibiotics this week because the veins get burned and wear down. They put this new line in because they took out the umbilical lines they had been using because the risk of infection is high if the umbilical lines stay in beyond a week or so.
Zeke is up to 60mL/kg/day on his feedings. If he can get up to 120mL/kg/day he will not need to get the PICC line. He is stooling well (TMI?). And his NIO2 is at 33%.
Friday, March 11, 2011
Day 7 (GA: 29)
Nanette did not fever last night and, although she is still on some pretty serious pain medication, she is feeling better all around. Given her improved health, she is getting discharged today! We are considering hiring a moving van---we have accumulated a ton of stuff in the "princess suite" over the last 6 weeks. While it is wonderful to be leaving the hospital it comes with mixed feelings. The doctors, nurses, aids, nutritionists, and other staff have provided such excellent care and we will miss them. In addition, we will not be sleeping a couple hallways away from the twins and have our own room to relax in when not in the NICU. But we will get to see our other kids more often, who we miss terribly; this ordeal is starting to wear on them.
Zeke has been off his ventilator for a full day and is doing great. The best part about no CPAP is that his face is open and visible. He only has a feeding tube and a little nose canulla. I took some pictures of the cute little guy. He did well with his feedings yesterday so he got bumped up to 30mL/kg/day. For reference, he is getting a total of about 120mL/kg/day. So if he took all his feeds and we took him off IV fluids, he would be getting 120mL/kg/day. So although he is getting increasing amounts of his mother's milk, he has a long way to go until he is 100% on milk.
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| Zeke with only a feeding tube and canulla |
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| Dad's fingers in view for size perspective. |
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| Zeke's toes while he is getting is blood pressure checked. |
Gabe continues to breath well with a little help from his ventilator friend. But today the respiratory therapist dropped his ventilator rate down to 10 breaths/minute, so only about 1 in 6 breaths are not spontaneous. If he follows his brother's pattern, he may be breathing entirely on his own in another day or two. He tolerated the first day of milk feedings so he will bump up from 10 to 20mL/kg/day.
Thursday, March 10, 2011
Day 6 (GA: 28 Weeks)
Today brings great news on all three fronts! Nanette is feeling much better and did no fever last night. She will finish her antibiotic IVs tonight. Dr. Chin is talking about discharging her tomorrow if she continues to remain fever-free.
Zeke has been "giving up" a bit of his feedings, which means he has some residual milk in his stomach that is not getting processed as quickly as would be expected. It is partly due to the air that he keeps swallowing from the CPAP (constant positive air pressure). The CPAP is only giving 10 breaths/minute and his total rate is about 50. Since his breathing is great and the CPAP is pushing air into his stomach, the doctors agreed to take him off the CPAP today and let him breath 100% on his own. He still has a canulla (little air tubes in his nose like anyone on oxygen) so the fraction inspired oxygen (FIO2) can be adjusted to keep his blood oxygen saturation levels high. Lately, he had been at 21% FIO2 (normal) and is "high satting" on occasion. So we expect good results for Zeke breathing on his own.
Gabe has been extubated for almost a full day now and is doing well breathing mostly on his own. He is still on CPAP, but is responding well. The ventilator is giving him 20 breaths per minute, which, when added to his spontaneous breaths, is giving a total rate of about 65 breaths/minute. He is going to start on 10mL/day of breast milk and we will see how he responds. His weight is down to 1230 grams, which is over 100 grams less than his birth weight (this is the weight he should be at 1 week). Dad changed another diaper and took his temperature today.
Zeke has been "giving up" a bit of his feedings, which means he has some residual milk in his stomach that is not getting processed as quickly as would be expected. It is partly due to the air that he keeps swallowing from the CPAP (constant positive air pressure). The CPAP is only giving 10 breaths/minute and his total rate is about 50. Since his breathing is great and the CPAP is pushing air into his stomach, the doctors agreed to take him off the CPAP today and let him breath 100% on his own. He still has a canulla (little air tubes in his nose like anyone on oxygen) so the fraction inspired oxygen (FIO2) can be adjusted to keep his blood oxygen saturation levels high. Lately, he had been at 21% FIO2 (normal) and is "high satting" on occasion. So we expect good results for Zeke breathing on his own.
Gabe has been extubated for almost a full day now and is doing well breathing mostly on his own. He is still on CPAP, but is responding well. The ventilator is giving him 20 breaths per minute, which, when added to his spontaneous breaths, is giving a total rate of about 65 breaths/minute. He is going to start on 10mL/day of breast milk and we will see how he responds. His weight is down to 1230 grams, which is over 100 grams less than his birth weight (this is the weight he should be at 1 week). Dad changed another diaper and took his temperature today.
Wednesday, March 9, 2011
Day 5 (GA: 28 weeks)
Nanette had a very rough night. She had two high fevers; the higher one was 39.1C (102.4F). She had multiple blood samples drawn, one of which was to start a culture and look for an infection in the blood (i.e., sepsis). She also got a urine analysis to look for a urinary tract infection. She has a continual throbbing pain in her abdomen. So once again, she slept very little. The doctors did take the staples out of her c-section incision and told her that if she fevers again before tomorrow, they will order a CT scan to look for an abscess. Her discharge date is still undetermined. It is hard to imagine her getting discharged as ghostly pale as she is. But she continues to pump breast milk for the babies and is giving her all for them.
Zeke is doing well. His bilirubin stayed low so he is still off the light therapy. His feeding is still at 20mL per day and he is processing most of it. During his "cares" this afternoon I took some pictures. Here is one with his little eyes open.
Gabe continues to improve. He also remains off his bili light. He lost a bunch of fluid again last night (180mL). And the change in his appearance from yesterday to today is as dramatic as the previous two days. His biggest improvement today was the removal of his breathing tube. He is on the same kind of CPAP machine that his little brother is. If does well on CPAP he will likely start breastmilk tomorrow. I witnessed the whole extubation process and took some pictures. I also included a picture of how he looked when he was retaining all the fluid, but with the bili light on the photo is not an award winning one and does not do justice in showing how puffy he was.
Zeke is doing well. His bilirubin stayed low so he is still off the light therapy. His feeding is still at 20mL per day and he is processing most of it. During his "cares" this afternoon I took some pictures. Here is one with his little eyes open.
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| Baby Zeke at 5 day old |
Gabe continues to improve. He also remains off his bili light. He lost a bunch of fluid again last night (180mL). And the change in his appearance from yesterday to today is as dramatic as the previous two days. His biggest improvement today was the removal of his breathing tube. He is on the same kind of CPAP machine that his little brother is. If does well on CPAP he will likely start breastmilk tomorrow. I witnessed the whole extubation process and took some pictures. I also included a picture of how he looked when he was retaining all the fluid, but with the bili light on the photo is not an award winning one and does not do justice in showing how puffy he was.
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| Gabe on Monday (3 days old). The Stay Puff Baby. |
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| Gabe today (5 Days old and hundreds of mL of urine later) |
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