Some good news today...they did Evan's chest ultrasound and it showed that his PDA is all healed. No PDA ligation surgery, yea! We had the opportunity to talk to Dr. Edde while we were there and she was pleased to give us the good news. She is considering starting a mild steroid treatment in hopes of giving him a little push to wean off the respirator. I think she had said this was her last day as the attending physician, so I think she was going to confer with the oncoming attending physician to be sure of the treatment plan.
Evan was so nice and calm when we first got there, but then, turned into mister fussy again. T and I watched him like a hawk since he was flailing his arms around (we were worried he would dislodge the respirator tube). It seems like every time they give him his dosage of Ativan, he gets really agitated. It was sad watching his little face grimace like he was trying to cry. It was like he was really trying to get that tube out. One of the nurses put a little bit of this sugar-water mix on his lips...she says that the mixture causes the brain to release endorphins (sort of like when you eat chocolate). He did start calming down a bit afterwards.
<12:05am>
O.k....the steroid treatment is a go! He'll be on a course of steroids for the next week (3 times a day, with the next three days being the highest dosages). His night nurse said he's been very calm (he hasn't pulled out his respirator tube thank goodness). Fingers crossed this will get him off the respirator! The nurse also said they started feeding him breast milk again (very small doses for now).
I'm driving up solo tomorrow so I can spend a bit more time with him.
--------------------
UMC Charges: $8,276.25
Running Total: $179,526.89
--------------------
Monday, July 31, 2006
Sunday, July 30, 2006
7/30/06: Day 16 (Sun.) Head IV (Ouch)
A picture of Evan and his dad talking...it's really hard to get any good pictures while he's in the incubator. Not much to report today...when we got there we noticed he had an IV in his head (ouch). The nurse took it out while we were there...she thought they had put it in during the prior shift to give him more blood. His blood pressure went sky-high when she took the IV out (they had taped it to his head really well), but he calmed down a lot after she finished.Evan was really fussy again while we were there...how nice of the nurse to tell us he was fine just before we got there. It doesn't help that every time we're there, they are rotating/repositioning him, which gets him a little upset. I changed his diaper and it was sopping wet, which is probably why he was fussy. He was breathing a lot against the respirator, so it's looking like he really wants to get that tube out. It's still better if he relaxes and just lets the respirator do it's work.
We're driving back up tomorrow, so hopefully there will be more good news to share. We're anxious to hear on Tuesday about how that medicine is doing on healing his PDA. The nurse told us he weighs almost 4 1/2 pounds, which still could be water weight, but he's looking bigger.
------------------
UMC Charges: $8,240.55
Running Total: $171,250.64
------------------
Saturday, July 29, 2006
7/29/06: Day 15 (Sat.) PDA Treatment Started
Although Evan celebrated his 2-week birthday yesterday, he is 33 weeks (adjusted gestational age) as of today...so getting closer to that 40-week full-term target age. We had a good talk with his resident (Andrea) today, but were bummed to hear she will be shifting over to TMC in a week or so. The residents switch locations every 30 days. She assured us the resident taking her place will be fully informed of Evan's condition.
Evan was even more fidgety today than we had seen him in the past. The nurse thinks that he's reached that tolerance point for the Fentanyl and is starting to feel things a bit more. They bumped up his dosage to get him to settle down a bit more. They also took an upper-body x-ray to make sure his PIC line is in the correct location after his nurse noticed that when she touched the area on his arm where the PIC line is, he became more agitated. The x-ray came back with no indication that his line was out of place, so he was just not a happy guy today! He kept opening his mouth wide like he was trying to yawn (or trying to get that respirator tube out).
They started him on the medication to help close his PDA problem. He'll get that medication over the course of three days. We'll know more on Tuesday when they do an ultrasound on his chest. The ultrasound will be able to tell if the medication worked or if he has to have the PDA ligation surgery. He did get a little blood transfusion today since his platelet counts were down a bit. Although he's A+ like both T and I are, he gets O- blood during the transfusion.
We had a good long visit with him today. I got to take his temperature and change his diaper again. Most of the time T and I had our hands on him trying to get him to settle down, but it didn't work too well. Hopefully tomorrow we can get an updated picture of him to post. :-)
-----------------
UMc Charges: $7,680.65
Running Total: $163,010.09
-----------------
Friday, July 28, 2006
7/28/06: Day 14 (Fri.) Two Weeks Old! PDA Diagnosed
Today we took a break and didn't drive up to Tucson. When I called the NICU to get an update on Evan, the nurse told me she was going to have the resident doctor (Andrea) call to discuss the results of an EKG they did. Andrea called me back about 30 minutes after I had called and told me the results of the EKG weren't in the computer yet. She did say that Dr. Eddy (who is the main doctor) would speak with us on Saturday about starting steroid treatment on Evan to help wean him off the respirator. There are good and bad points of using steroids, but the benefits far outweigh the risks. The one big risk is that steroids supress the immune system which can make him prone to infection. The benefit would be that steroids cut down on the lung inflammation, which would help him breathe easier.
The rest of the call went well...nothing else major to report about. About thirty minutes later, the phone rings again and it's the NICU. Andrea was calling again to tell me she saw the results of the EKG. She said that the EKG shows that Evan has a PDA, which stands for Patent Ductus Arteriosus (it sounds like a Harry Potter spell to me). :-) It is a very common condition that the majority of preemies get. Not to get too medical technical on you, it basically means, a blood vessel near his heart and lungs did not close as it is supposed to do after birth. When a baby is still in the womb, that blood vessel sends blood directly into the aorta (bypassing the lungs which aren't being used yet). When a term baby is born and starts breathing, the PDA starts to close automatically. Since Evan wasn't born at term and didn't start breathing normally, his PDA didn't get that signal to close. Andrea says that almost 80% of the babies in the NICU have PDA, so he's not alone.
So, treatment is for him to get doses of indomethacin over the next few days (the only drawback is that this medication works best if the baby is within 2 weeks of birth and Evan is right on that time limit). If that medication doesn't close the PDA, then he will have to have surgery to close it. The PDA ligation surgery (if he has to have it), is a very safe operation and is always successful. They would go through his back (so it's not open-heart) and the result would be a very small scar that would fade over time. So, fingers crossed the medication works, but if he has to have surgery, it's not anything to worry about.
So now, with that second phone call, the steroid treatment is on hold since the PDA treatment takes priority. The PDA could also be contributing to Evan not coming off the respirator more quickly, so we'll be glad to get that cleared up. After the PDA heals, he may not need the steroid treatment anyway.
We'll get more details tomorrow after our visit.
-------------------
UMC Charges: $9,825.95
Running Total: $155,329.44
-------------------
The rest of the call went well...nothing else major to report about. About thirty minutes later, the phone rings again and it's the NICU. Andrea was calling again to tell me she saw the results of the EKG. She said that the EKG shows that Evan has a PDA, which stands for Patent Ductus Arteriosus (it sounds like a Harry Potter spell to me). :-) It is a very common condition that the majority of preemies get. Not to get too medical technical on you, it basically means, a blood vessel near his heart and lungs did not close as it is supposed to do after birth. When a baby is still in the womb, that blood vessel sends blood directly into the aorta (bypassing the lungs which aren't being used yet). When a term baby is born and starts breathing, the PDA starts to close automatically. Since Evan wasn't born at term and didn't start breathing normally, his PDA didn't get that signal to close. Andrea says that almost 80% of the babies in the NICU have PDA, so he's not alone.
So, treatment is for him to get doses of indomethacin over the next few days (the only drawback is that this medication works best if the baby is within 2 weeks of birth and Evan is right on that time limit). If that medication doesn't close the PDA, then he will have to have surgery to close it. The PDA ligation surgery (if he has to have it), is a very safe operation and is always successful. They would go through his back (so it's not open-heart) and the result would be a very small scar that would fade over time. So, fingers crossed the medication works, but if he has to have surgery, it's not anything to worry about.
So now, with that second phone call, the steroid treatment is on hold since the PDA treatment takes priority. The PDA could also be contributing to Evan not coming off the respirator more quickly, so we'll be glad to get that cleared up. After the PDA heals, he may not need the steroid treatment anyway.
We'll get more details tomorrow after our visit.
-------------------
UMC Charges: $9,825.95
Running Total: $155,329.44
-------------------
Thursday, July 27, 2006
7/27/06: Day 13 (Thurs.) IVH Status Unchanged
Another trip to Tucson today...I had the opportunity to talk with the resident doctor who is looking after Evan. The resident is really nice and easy to talk to...but she makes me feel old. Are doctors getting younger or am I just getting old!? :-)
They did another head ultrasound today to re-check those two areas I wrote about in an earlier post. They didn't see any change from the original ultrasound, so that is a great thing. It means it isn't getting worse and chances are, those two areas will just heal as his brain grows.
The doctor predicts (if all goes as it has been going), that he will be weaned off the oscillating respirator possibly late next week. She can't predict if he will go back on the normal respirator or if he will be able to go onto the CPAP. A little speck of light at the end of the tunnel...but, don't be surprised if he relapses again (all part of what preemies do).
One odd thing is that they did a genetic test on him (as they do will all newborn babies at UMC)...and he had two abnormal results. The doctor told me they will re-do the test later since they think the results aren't correct due to Evan having a blood transfusion prior to the test. One abnormality is with his thyroid level...that result didn't surprise me since I've been hypothyroid since '99. The doctor wasn't aware of my medical condition and wrote that into his chart. The other abnormality I can't remember what it was...all is remember is it's a long word. The doctor said Evan was only off by a point or so on the optimal range for that test (again, showing that the results are probably off due to his transfusion). Both result abnormalities aren't something short-term to worry about anyway according to the doctor.
The doctor told me down the road they may have to do some sort of plastic surgery on Evan's foot due to that bicarb infustion burn. She assured me the burn/wound specialists are keeping an eye on his foot everyday and are working on healing it the best they can. I didn't get to see his foot today since it was bandaged, but even his day shift nurse Marianne says, his foot will look worse before it looks better. We're still in the looking worse stage.
They re-started feeding him micro-doses of breast milk today. He is still getting complete nutrition through his IVs, so they are still just testing him to see what he will tolerate.
That's it for today!
-----------------
UMC Charges: $6,971.50
Running Total: $145,503.49
-----------------
They did another head ultrasound today to re-check those two areas I wrote about in an earlier post. They didn't see any change from the original ultrasound, so that is a great thing. It means it isn't getting worse and chances are, those two areas will just heal as his brain grows.
The doctor predicts (if all goes as it has been going), that he will be weaned off the oscillating respirator possibly late next week. She can't predict if he will go back on the normal respirator or if he will be able to go onto the CPAP. A little speck of light at the end of the tunnel...but, don't be surprised if he relapses again (all part of what preemies do).
One odd thing is that they did a genetic test on him (as they do will all newborn babies at UMC)...and he had two abnormal results. The doctor told me they will re-do the test later since they think the results aren't correct due to Evan having a blood transfusion prior to the test. One abnormality is with his thyroid level...that result didn't surprise me since I've been hypothyroid since '99. The doctor wasn't aware of my medical condition and wrote that into his chart. The other abnormality I can't remember what it was...all is remember is it's a long word. The doctor said Evan was only off by a point or so on the optimal range for that test (again, showing that the results are probably off due to his transfusion). Both result abnormalities aren't something short-term to worry about anyway according to the doctor.
The doctor told me down the road they may have to do some sort of plastic surgery on Evan's foot due to that bicarb infustion burn. She assured me the burn/wound specialists are keeping an eye on his foot everyday and are working on healing it the best they can. I didn't get to see his foot today since it was bandaged, but even his day shift nurse Marianne says, his foot will look worse before it looks better. We're still in the looking worse stage.
They re-started feeding him micro-doses of breast milk today. He is still getting complete nutrition through his IVs, so they are still just testing him to see what he will tolerate.
That's it for today!
-----------------
UMC Charges: $6,971.50
Running Total: $145,503.49
-----------------
Wednesday, July 26, 2006
7/26/06: Day 12 (Wed.) PIC Line Adjustment
We're almost settled into our hospital routine (not something I'm overjoyed about though). Today I drove up earlier in the day without T since it seems the past few days we've been so rushed to get on the road after he comes home from work, visit with Evan before shift change at 6:45 and then have to turn right around and head back home. It was nice to have a bit more time to sit with him and talk with one of his primary nurses, Marianne.
A tiny bit of good news is that they are slowly turning down the amplitude on his respirator. I didn't have the chance to talk with any of the doctors to ask them what signs they look for to take him off that oscillating respirator and onto the nasal CPAP or regular respirator. Now, it seems like we just have to be patient and let time mature his lungs.
The burn specialists looked at his right foot this morning and they are applying a special dressing to the burn. I got to see the wound and it looks really bad...the skin is all black in a square shape. They have to change out his dressing every 4 hours. Hopefully, he won't have too bad of a scar.
He had an x-ray today to check on the PIC line (to make sure it's in the right position). Marianne said they pulled it back a bit since it wasn't sitting in a optimal position. She wasn't sure if they were able to see the condition of his lungs on the x-ray...but she is sure they are healing well since she doesn't get much discoloration when she suctions his lungs.
Evan was really fidgity today, the most I've seen him move around. Marianne told me they are cutting back on his Fentanyl which is for pain and he is probably becoming more sensitive to the environment. In his right arm/hand is the catheter that monitors his blood pressure (the ART line). Since he's been moving around more, he kept flat-lining the ART line and setting off an alarm. Marianne just moves his arm and the monitor corrects itself. She laughs since he always wants to have his arm up (he usually keeps both his arms up, likes he's being held up at gunpoint). She'll put his arm down by his side, but he'll immediately put it back up. He likes to have his arm near the respirator tube.
That's it for today!
-------------------
UMC Charges: $7,035.25
Running Total: $138,531.99
-------------------
A tiny bit of good news is that they are slowly turning down the amplitude on his respirator. I didn't have the chance to talk with any of the doctors to ask them what signs they look for to take him off that oscillating respirator and onto the nasal CPAP or regular respirator. Now, it seems like we just have to be patient and let time mature his lungs.
The burn specialists looked at his right foot this morning and they are applying a special dressing to the burn. I got to see the wound and it looks really bad...the skin is all black in a square shape. They have to change out his dressing every 4 hours. Hopefully, he won't have too bad of a scar.
He had an x-ray today to check on the PIC line (to make sure it's in the right position). Marianne said they pulled it back a bit since it wasn't sitting in a optimal position. She wasn't sure if they were able to see the condition of his lungs on the x-ray...but she is sure they are healing well since she doesn't get much discoloration when she suctions his lungs.
Evan was really fidgity today, the most I've seen him move around. Marianne told me they are cutting back on his Fentanyl which is for pain and he is probably becoming more sensitive to the environment. In his right arm/hand is the catheter that monitors his blood pressure (the ART line). Since he's been moving around more, he kept flat-lining the ART line and setting off an alarm. Marianne just moves his arm and the monitor corrects itself. She laughs since he always wants to have his arm up (he usually keeps both his arms up, likes he's being held up at gunpoint). She'll put his arm down by his side, but he'll immediately put it back up. He likes to have his arm near the respirator tube.
That's it for today!
-------------------
UMC Charges: $7,035.25
Running Total: $138,531.99
-------------------
Tuesday, July 25, 2006
7/25/06: Day 11 (Tues.) First Diaper Change
Another relatively good day for the little guy. His nurse told us they are only checking his blood gases every 6 hours (instead of every 3 hours). This measures oxygen, carbon dioxide and acid content in a small blood sample taken from his artery. That's a good thing since it shows his respiratory system is slowly starting to kick in and they don't need to check it so often.
He was off the bililights (again)...so hopefully the jaundice is all gone. The burn on his right foot (that I wrote about yesterday) is going to get looked at by a specialist. The nurse told me those burns happen due to the bicarb infusions they do. If the IV isn't placed precisely correct (which is hard due to preemies little veins and arteries), a chemical-like burn can happen. At least it didn't happen on his forehead as is the case with other preemies. This burn is on top of his foot, so even if he gets a scar, it won't be that obvious.
I did get to change his diaper today! It's my first diaper change! He hasn't had a bowel movement yet, so it was pretty easy despite doing it through the incubator. The even weigh each wet diaper and it gets charted with the rest of medications and information. His eye lids didn't look so puffy today, so hopefully his swelling is decreasing. I was assured by the nurse that the odd shape to his head will go away (since he lays on his side all the time, his head is getting narrow and flat on the sides).
-----------------
UMC Charges: $6,863.45
Running Total: $131,496.74
-----------------
He was off the bililights (again)...so hopefully the jaundice is all gone. The burn on his right foot (that I wrote about yesterday) is going to get looked at by a specialist. The nurse told me those burns happen due to the bicarb infusions they do. If the IV isn't placed precisely correct (which is hard due to preemies little veins and arteries), a chemical-like burn can happen. At least it didn't happen on his forehead as is the case with other preemies. This burn is on top of his foot, so even if he gets a scar, it won't be that obvious.
I did get to change his diaper today! It's my first diaper change! He hasn't had a bowel movement yet, so it was pretty easy despite doing it through the incubator. The even weigh each wet diaper and it gets charted with the rest of medications and information. His eye lids didn't look so puffy today, so hopefully his swelling is decreasing. I was assured by the nurse that the odd shape to his head will go away (since he lays on his side all the time, his head is getting narrow and flat on the sides).
-----------------
UMC Charges: $6,863.45
Running Total: $131,496.74
-----------------
7/24/06: Day 10 (Mon.) PIC Line Moved
Another non-drama day (yea)! I did forget to mention in the previous post that Evan gained a bit of weight (even though they think it's due to water retention). As of Sunday he weighed 4 pounds, 2 ounces (up from 3 lbs. 8 oz. when he was born). Weight has never been an issue with him since he was a decent size for his age to begin with, but it's good to see the numbers go up. When we were there on Monday, T and I were commenting on how much bigger he is looking (especially his feet). Evan has a "neighbor" who is one of a set of twin boys who are 26 weeks old and weigh a little over 2 pounds, so he's the big kid on the block!
Not sure if I mentioned before, they had to move his PIC line from his foot to his left hand, so now his feet are totally free of catheters and lines. But, both his hands are pretty much bundled up since they use his right hand to draw blood and the left hand for the PIC line. Almost every time we see him, he always has his hand on the respirator tube, so he must be feeling the sensation from it. They think his lung issue has cleared up since when they suction his lungs, they have been clear (aside from a little bit of pink tinge which they aren't too worried about). His right foot did get some sort of burn on it that they are healing with this blue gel-like stuff. He's still on the bililights, hopefully it will clear out his system this time.
One thing I have to complain about though...on Sunday, I drove the Trailblazer to the hospital...someone stole my Steeler antenna ball!! Oh, the humanity!! Can you believe!? I noticed he was gone when I was driving home... Bummer! We have found that entering and exiting the UMC parking garage is a lesson in defensive driving since no one watches where they are going.
---------------
UMC Charges: $7,561.25
Running Total: $124,633.29
---------------
Not sure if I mentioned before, they had to move his PIC line from his foot to his left hand, so now his feet are totally free of catheters and lines. But, both his hands are pretty much bundled up since they use his right hand to draw blood and the left hand for the PIC line. Almost every time we see him, he always has his hand on the respirator tube, so he must be feeling the sensation from it. They think his lung issue has cleared up since when they suction his lungs, they have been clear (aside from a little bit of pink tinge which they aren't too worried about). His right foot did get some sort of burn on it that they are healing with this blue gel-like stuff. He's still on the bililights, hopefully it will clear out his system this time.
One thing I have to complain about though...on Sunday, I drove the Trailblazer to the hospital...someone stole my Steeler antenna ball!! Oh, the humanity!! Can you believe!? I noticed he was gone when I was driving home... Bummer! We have found that entering and exiting the UMC parking garage is a lesson in defensive driving since no one watches where they are going.
---------------
UMC Charges: $7,561.25
Running Total: $124,633.29
---------------
Sunday, July 23, 2006
7/22/06 & 7/23/06: Days 8 & 9 (Sat. & Sun.) Still Working on His Tan
Two days with little to write about (and that's a good thing). The little guy is back under the bililights...I think he's just working on a tan! They saw his bilirubin counts go up again and thought it was best to get him back under the lights. The yellow-ness looks to me to be mostly in his legs.
They removed the two UVC and UAC lines going into his umbilical cord. I think they both could only stay in for about a week anyway (due to potential clotting). Now he has a line going into his foot instead that is doing the job of those two lines (called a PIC line...Percutaneous Intravenous Catheter). So now he's not looking so wired-up. The PIC line can be used for several kinds of injections and infusions so he doesn't have to be poked so many times.
Today his nurse said they took an abdominal x-ray since she had felt a hardness in his groin/leg area. It turned out to be a minor thing...the PIC line they put in his foot needed to be adjusted since it was causing the edema in that area. It's a common thing from what they tell me.
His blood platelet counts have been steady, so they haven't had to infuse him. He's also tolerating breast milk down his feeding tube. He gets that every three hours. They are increasing the amounts every day to see how much he can tolerate. They plan on feeding him 30ml every day, which is a pretty good amount.
He is still on the oscillating respirator and his CO2 level is looking good (they fluctuate in between the 40s and 50s). I think earlier I posted his CO2 levels should be in the teens, but that number is wrong...the nurse told me his CO2 monitor was probably not on tight and had room air slipping under it, causing the reading to be so low.
That's it for this weekend...we'll be driving up tomorrow after work.
--------------------
UMC Charges (7/22): $6,832.35
UMC Charges (7/23): $7,956.65
Running Total: $117,072.04
--------------------
They removed the two UVC and UAC lines going into his umbilical cord. I think they both could only stay in for about a week anyway (due to potential clotting). Now he has a line going into his foot instead that is doing the job of those two lines (called a PIC line...Percutaneous Intravenous Catheter). So now he's not looking so wired-up. The PIC line can be used for several kinds of injections and infusions so he doesn't have to be poked so many times.
Today his nurse said they took an abdominal x-ray since she had felt a hardness in his groin/leg area. It turned out to be a minor thing...the PIC line they put in his foot needed to be adjusted since it was causing the edema in that area. It's a common thing from what they tell me.
His blood platelet counts have been steady, so they haven't had to infuse him. He's also tolerating breast milk down his feeding tube. He gets that every three hours. They are increasing the amounts every day to see how much he can tolerate. They plan on feeding him 30ml every day, which is a pretty good amount.
He is still on the oscillating respirator and his CO2 level is looking good (they fluctuate in between the 40s and 50s). I think earlier I posted his CO2 levels should be in the teens, but that number is wrong...the nurse told me his CO2 monitor was probably not on tight and had room air slipping under it, causing the reading to be so low.
That's it for this weekend...we'll be driving up tomorrow after work.
--------------------
UMC Charges (7/22): $6,832.35
UMC Charges (7/23): $7,956.65
Running Total: $117,072.04
--------------------
Friday, July 21, 2006
7/21/06: Day 7 (Fri.) One Week Old! IVH Diagnosed
O.k...back to the little guy...celebrating one week today! That puts him up to 32 weeks gestational age as of Saturday. Today was one of those days we hope we have more of...absolutely nothing extreme to report about. He was pretty much in the same situation as yesterday...sedated so the oscillating respirator can do its job. His blood gases keep improving and they did feed him with a drop of milk today...steady gains! His chest x-rays are also clearing up....each one is better than the previous one, so his lungs are slowly healing.
The doctor did tell us his head ultrasound showed a mild (for you medical techies...grade 1 and 2) intraventricular hemorrhage (IVH) in his brain. They say this is very common due to the trauma of a preemie birth. There is little risk of any complications since his grades are so low (low grades are good in this case). ;-) IVH grades range from 1 being very mild to 4 being severe. They will do another head ultrasound in about a week to see if the hemorrhage is growing or shrinking. Since his vital signs are so good, they anticipate that it is healing itself. It was great for the doctor to tell us that Evan's case isn't anything they haven't seen before, so he's not unique (for once it's good to not be unique)!
We got a book called "The Essential Guide for Parents of Premature Babies" and has been a great read to get us caught up on all the NICU terminology. It's reassuring to read that Evan fits right in line with a lot of the book, which helps answer many of our questions.
----------
Chronological age: 0 months 1 week 0 days
Adjusted/Gestastional age: 31 6/7 weeks
------------------------
UMC Charges: $8,019.90
Running Total: $102,283.04
-----------------------
The doctor did tell us his head ultrasound showed a mild (for you medical techies...grade 1 and 2) intraventricular hemorrhage (IVH) in his brain. They say this is very common due to the trauma of a preemie birth. There is little risk of any complications since his grades are so low (low grades are good in this case). ;-) IVH grades range from 1 being very mild to 4 being severe. They will do another head ultrasound in about a week to see if the hemorrhage is growing or shrinking. Since his vital signs are so good, they anticipate that it is healing itself. It was great for the doctor to tell us that Evan's case isn't anything they haven't seen before, so he's not unique (for once it's good to not be unique)!
We got a book called "The Essential Guide for Parents of Premature Babies" and has been a great read to get us caught up on all the NICU terminology. It's reassuring to read that Evan fits right in line with a lot of the book, which helps answer many of our questions.
----------
Chronological age: 0 months 1 week 0 days
Adjusted/Gestastional age: 31 6/7 weeks
------------------------
UMC Charges: $8,019.90
Running Total: $102,283.04
-----------------------
Pictures from Grand Convention
O.k...I know this isn't a post about the little guy...so bear with me. Two weeks prior to Evan deciding to join us, I was in San Antonio for the Kappa Alpha Theta Grand Convention. Wow, so lucky he decided to wait two weeks. All that estrogen during those 4 days probably scared him into staying in anyway. ;-) It was a fun time, from the picture, you can tell my hair was loving all that humidity (ick)!
The picture is of all the Permanent Alumnae Secretaries (PASs) who were in attendence. I am the PAS for my college chapter and all that means is I keep track of everyone's addresses. My chapter is relatively easy to keep track of since we have young alumnae (who are almost all on e-mail) and we are a newer chapter (we only have about 350 alumna).
The ladies in the picture are PASs from all over the country and keep track of these collegiate chapters: Purdue, North Dakota State, Ohio Wesleyan, U of South Florida, Denison, Penn State, UNC, Loyola Marymount, and USC (oh, and me keeping track of Washington & Jefferson College).
Oh...and for Joey P...I didn't get any good film of sorority girl pillow fights or anything like that! I know you'll be disappointed! ;-)
This picture is of me with the officers who attended Convention (Rachel, President; Jen, VP Education; Kristin, Convention Awards; and fellow advisory board member Marge)
7/20/06: Day 6 (Thu.) Chin-Butt Alert
Busy day today...thanks to my Doctrine co-workers for throwing me a baby shower/luncheon at Johnny Carino's. I'll go out to eat anytime, just give me a call!
We drove up to Tucson around 2:30pm...getting there sometime after 4pm. Evan is off the bililights (yea)! The nurses say the jaundice could come back, so no need to worry if we visit another day and he's back under the light. Now we could sort of see his face without the eye covers on. His eyes (and face in general) are swollen from water retention.
From the picture you can see that Evan does have a little inkling of a chin cleft (or "chin-butt" as we call it), indicating that he is indeed momma's boy! Score one for mom! His hair is still a mess since he hasn't has a bath yet, so we can't really tell what his hair color is.
He is still on the oscillating ventilator which is giving him 500 breaths per minute, but they have reduced the amplitude settings (meaning, the breaths aren't as forceful). We got to speak with one of the resident doctors and she said they hope to start feeding him through a gavage (instead of the umbilical cord) maybe Friday. What they will do is test him to see if he will tolerate being fed through the gavage (feeding tube through the nose down into the stomach) and increase the amount given to him. If he doesn't tolerate it (if he is showing too much bile in his system), they'll put him back on the umbilical cord IV feed line.
His CO2 levels are still coming down (I think they were in the 40's), which is good. They took another chest x-ray and it is slowly getting clearer. They are still trying to determine what caused the Tuesday episode by doing a culture of some lung fluid. In the lab, they'll work with it to see if any viral or bacterial stuff appears. It takes a few days to do it, so no results yet. With all the people in and out of the NICU and different people handling the babies, it's a wonder more babies don't catch a little bug.
His red blood cell counts are going up, so he didn't have to have any blood transfusions. While we were there, we got to see the nurse do the fun job of flipping him from his belly to his back and rotating him (his bed is slightly slanted so he needed to be upright). It took a team of 3 people all having to pitch in and help since he is a tangle of IV lines and his respirator tubes. His poor little head is all misshapen since he has to keep his head turned to the side for the ventilator. You can sort of see in the picture (that was after they flipped and rotated him) that the side of his head is flat.
So, overall, it was a good day...no major bump in the road.
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Chronological age: 0 months 0 weeks 6 days
Adjusted/Gestastional age: 31 5/7 weeks
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UMC Charges: $$8,176.30
Running Total: $94,263.14
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Wednesday, July 19, 2006
7/19/06: Day 5 (Wed.) Lungs Healing
First off, Happy Birthday to my Mom down in Florida!! I don't think we're planning a trip up to Tucson today. I'm working on getting paperwork done for medical leave, Evan's birth certificate and other stuff.
I spoke with Evan's nurse this morning (Marianne). She was the nurse on duty yesterday when he had the bad day. She said he is doing much better now. His morning chest x-ray still was a cloudy-white, but not as bad as yesterday. She said the doctors are just letting him run his course, there's not much worry at this point.
She said last night when they suctioned his lungs there was a little bit of a pink tinge indicating some blood, but this morning when she suctioned him again, he was all clear. Yesterday, prior to his episode right when we got there, Marianne had given him a dose of blood platelets which they think may have helped him heal faster. They think he had some sort of scratch in his lungs that caused all that blood to appear yesterday (which is a common thing due to that darn respirator). Last night, his red blood count was low, so he got a little bit of blood again. They are continuing to check his blood gas counts every few hours.
They hope to take him off the bililights maybe tomorrow since the jaundice is working its way out. Marianne said his leg bruising is almost gone also. So all in all, it's a good day so far. I'll call the night shift nurses this evening to see how all goes today and post more later.
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Chronological age: 0 months 0 weeks 5 days
Adjusted/Gestastional age: 31 4/7 weeks
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UMC Charges: $9,506.05
Running Total: $86,086.84
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I spoke with Evan's nurse this morning (Marianne). She was the nurse on duty yesterday when he had the bad day. She said he is doing much better now. His morning chest x-ray still was a cloudy-white, but not as bad as yesterday. She said the doctors are just letting him run his course, there's not much worry at this point.
She said last night when they suctioned his lungs there was a little bit of a pink tinge indicating some blood, but this morning when she suctioned him again, he was all clear. Yesterday, prior to his episode right when we got there, Marianne had given him a dose of blood platelets which they think may have helped him heal faster. They think he had some sort of scratch in his lungs that caused all that blood to appear yesterday (which is a common thing due to that darn respirator). Last night, his red blood count was low, so he got a little bit of blood again. They are continuing to check his blood gas counts every few hours.
They hope to take him off the bililights maybe tomorrow since the jaundice is working its way out. Marianne said his leg bruising is almost gone also. So all in all, it's a good day so far. I'll call the night shift nurses this evening to see how all goes today and post more later.
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Chronological age: 0 months 0 weeks 5 days
Adjusted/Gestastional age: 31 4/7 weeks
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UMC Charges: $9,506.05
Running Total: $86,086.84
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Tuesday, July 18, 2006
7/18/06: Day 4 (Tues.) Pulmonary Hemorrhage*
I think I may be off on my day numbering, so bear with me. :-) Wow, amazing how things can change from day to day. All part of being a preemie. Today our little guy was not a happy camper.
I had called earlier in the morning for a check on how he did through the night. He was moved into an incubator (which is actually a good thing), but his blood platelet counts were down and they had to give him a bit more blood. They are trying to wean him off sedation to see how he manages, so all this could have played a role in the distress he had today.
By the time we got there, he went into a little bit of respiratory distress. They found a bit of blood in his lungs and took an x-ray. His lung x-ray came back white (which meant his lungs were a mess). His CO2 readings went sky high (meaning he couldn't blow-off his CO2). The attending doctor and numerous nurses all were working on him to get him back to reasonable levels. His other vital signs were rock-steady, so the nurses and doctor were not in any panic mode.
They took him off the respirator to see what he would do (hoping he would be happy with that), but he didn't do well and they had to intibate him again (not fun). They put him on a different type of respirator, one that breathes 500 times a minute for him so that was finally bringing his CO2 levels back down (he was at 90+ and normal is around 50). They gave him some demerol and were ordering some more sedation to mellow him out and let this other respirator heal him. They plan on doing another x-ray tomorrow morning, so hopefully they'll see clear lungs.
All we could do today was stand back and watch, we didn't even get to touch him. Not sure if we are driving up tomorrow, but I will post an update from the nurses as I get them.
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Chronological age: 0 months 0 weeks 4 days
Adjusted/Gestastional age: 31 3/7 weeks
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UMC Charges: $10,499.60
Running Total: $75,580.79
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I had called earlier in the morning for a check on how he did through the night. He was moved into an incubator (which is actually a good thing), but his blood platelet counts were down and they had to give him a bit more blood. They are trying to wean him off sedation to see how he manages, so all this could have played a role in the distress he had today.
By the time we got there, he went into a little bit of respiratory distress. They found a bit of blood in his lungs and took an x-ray. His lung x-ray came back white (which meant his lungs were a mess). His CO2 readings went sky high (meaning he couldn't blow-off his CO2). The attending doctor and numerous nurses all were working on him to get him back to reasonable levels. His other vital signs were rock-steady, so the nurses and doctor were not in any panic mode.
They took him off the respirator to see what he would do (hoping he would be happy with that), but he didn't do well and they had to intibate him again (not fun). They put him on a different type of respirator, one that breathes 500 times a minute for him so that was finally bringing his CO2 levels back down (he was at 90+ and normal is around 50). They gave him some demerol and were ordering some more sedation to mellow him out and let this other respirator heal him. They plan on doing another x-ray tomorrow morning, so hopefully they'll see clear lungs.
All we could do today was stand back and watch, we didn't even get to touch him. Not sure if we are driving up tomorrow, but I will post an update from the nurses as I get them.
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Chronological age: 0 months 0 weeks 4 days
Adjusted/Gestastional age: 31 3/7 weeks
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UMC Charges: $10,499.60
Running Total: $75,580.79
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7/17/06: Day 3 (Mon.) First Visit*
We drove up to UMC on Monday to see our little guy...not sure what we were in for. I was scared to go in, but everything was just fine. Evan is right on track for a preemie his age, sort of a "textbook" case so to speak. We got to talk to the doctor who was in the NICU at the time (Dr. Wispe)and he gave us a lot of reassuring information. He still thinks he won't be home until his expected due date, but he hopes that if he reacts very well to his treatment, he could be transferred back to the Sierra Vista Hospital to be taken care of there (but we're still talking a long ways down the road).
He has a nurse dedicated to taking care of him (well, there are more than one, but we met the one taking care of him during the day shift). The nurses are more than happy to get us educated on what all the monitors and tubes are for. We had a lot of information overload yesterday we're still trying to digest. But basically the steps are for him to come off the respirator later this week...then he'll go on the CPAP (to force pressured air into his lungs), and then just to the nasal cannula (with just continuous oxygen). We we're with him before and after lunch, and even in that time, they dropped his oxygen down from 28% to 26%, which is a good sign.
He is still a bit sedated since he was fussy Sunday night. They would rather have him sleep and let the respirator do the healing than him fighting it. His legs are looking so much better. They put a different IV line in his body so they don't have to draw blood samples from his feet. Funny, his blood is A+ just like both his mom and dad! He is under the "bili-light" to get the jaundice out of his system. The nurse told us we could be holding him if it wasn't for the bililight....they need to get his sytem cleared out first.
We did finally get his birth length...this kid is 41 cm which is about 16 1/4 inches long. If he would have been a full-term baby, we would have had some issues!! Even his nurse thought he was an older baby. So many things are going in his favor. His weight is still the same (which is to be expected).
So, we'll be going back up today...they are hoping to get him on a feeding line (through his nose directly into his stomach) in a day or so. Currently, he has a feeding line directly into his umbilical cord. They'll be able to start using breastmilk down that feeding tube, so hopefully that will give him a good jolt of nutrients.
I'll post more later! Thanks for all the supportive e-mails. It's hard to get back to everyone, but you pretty much know, no news is good news from us. We're managing well, so don't worry about us. Since we can't hold him yet, there's no rush for us to be there 24/7; so T's still doing some hours at work and we'll go up in the afternoon. I get to chill with the pups in the morning, which they like. I'm recovering really quickly from the surgery, ...the cankles have arrived people!!
P.S....The photo is a bit overexposed due to the bililight.
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Chronological age: 0 months 0 weeks 4 days
Gestastional age: 31 2/7 weeks
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UMC Charges (7/15): $11,187.90
UMC Charges (7/16): $8,541.50
UMC Charges (7/17): $6,414.05
Running total: $66,081.19
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Sunday, July 16, 2006
Updates
So you all understand the picture in the previous post...Evan's legs were bruised since he was in a completely breech position...he had to be pulled out by his feet. That picture was taken at SV Hospital right after he was born.
As of Sunday 7/16 8:30am: NICU nurse told us he had to be sedated last night since he was fussy. She said he was a "noodle" today, which I think is a good thing, that he is resting comfortably.
As of Saturday 7/15: NICU nurse told us they reduced his ventilator a notch. He had to have a little blood transfused since his body at this preterm age, doesn't reproduce blood yet.
As of Sunday 7/16 8:30am: NICU nurse told us he had to be sedated last night since he was fussy. She said he was a "noodle" today, which I think is a good thing, that he is resting comfortably.
As of Saturday 7/15: NICU nurse told us they reduced his ventilator a notch. He had to have a little blood transfused since his body at this preterm age, doesn't reproduce blood yet.
7/14/2006: (Fri.) Our early arrival!
Apologies for this mass e-mail, but things have gotten a little crazy recently! For those of you who haven't heard already, our little boy decided to come early...very, very early.
Evan Michael Dorris was born on Friday July 14th at 12:38pm by emergency c-section in the Sierra Vista Regional Medical Center. He is about 9-10 weeks early (about 30 weeks old). For his age, he is pretty good size baby...he weighed in at 3 pounds 8 ounces. His only problem (thus far) is his immature lungs.
He was life-flighted to University Medical Center in Tucson at about 4pm on Friday and it is predicted he'll be there for about 8 weeks (until his original due date of 9/16). From what we've been told, UMC is a great facility, so there's no worries about the care he will receive. We're driving up tomorrow for the first time, since I just got released from the hospital.
So, if you don't hear from us, you'll understand we're in a bit of chaos trying to figure out how to deal with a premature baby staying in a hosptial and hour and a half away. I will post updates to my weblog (instead of e-mailing everyone). So book mark this page: http://soazsteelerfan.blogspot.com/
Keep us in your thoughts and prayers! We picked the name Evan since it means "young warrior" and this little guy has a bit of a fight ahead of him.
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Chronological age: 0 months 0 weeks 0 day
Gestastional age: 30 6/7 weeks
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University Medical Center (UMC) Charges: $8,823.90
AirEvac Charges: $16,479.00
Sierra Vista Hospital Charges (Evan): $4,159.74
Sierra Vista Hospital Charge (Jen): $10,474.36
Total for the day: $39,937.74
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Wednesday, July 12, 2006
About 9 weeks left!
The weeks have been flying by so I guess I have to get into gear and start buying some baby stuff. I guess I'm still in denial that this is really going to happen. :-)
At my doctor's appointment yesterday, they tell me I am measuring big at 35 weeks (and believe me, I am feeling all 35 weeks of that). I have another ultrasound scheduled on July 28th to see if the baby is measuring big (or is it just me). ;-)
At my doctor's appointment yesterday, they tell me I am measuring big at 35 weeks (and believe me, I am feeling all 35 weeks of that). I have another ultrasound scheduled on July 28th to see if the baby is measuring big (or is it just me). ;-)
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