Monday, June 02, 2008
Eric weekend update Current mood: hopeful
Eric had a bad day again on Saturday. While his sats and stats had been up and down all day, they bottomed out at 12% oxygen in the blood. The ideal range is 85-92% and nurses start to take action at the high 70s. There were 3 nurses and 2 doctors working on Eric trying to get his oxygen up, but they were unable to get it above the high 20s (which is very bad), so they pulled his respirator tube. Unplanned extibation (pulling the oxygen tube out of the lungs) is always a bit scary. The respirator tube had clogged with mucus and that is why it had stopped working, which does happen from time to time. It took them a few minutes to get a secondary respirator on Eric, so the doctors and nurses had to manually pump air into Eric (called bagging) for that time.
Since Eric was scheduled to try to move to a cpap respirator (it is a mask that fits around his nose, instead of a tube) in a few days, they tried it early. After about 3.5 hrs, Eric was not doing well on it and was re-intibated with the oxygen tube back into his lungs. For the brief time Eric was on the cpap, he was not a happy baby and did not like air being shoved up his nose (they had to keep him on 100% oxygen for the 3.5 hrs).
Once Eric was moved back to the tube based respirator, he did much better. Sunday was another up and down day, but on the whole a much better day. although the Saturday respirator and breathing issues set Eric back a few days, on Sunday he was doing much better overall. Eric has developed an external yeast infection, which they are treating with a cream when they change his diapers. This is a common problem with babies that are in the warm, moist, and dark isolation chambers like Eric is. This makes Eric even more cranky when changing his diapers. Since Eric is still so fragile, we still cannot hold Eric yet, and the problems on Saturday pushed back that day for many more days. We continue to be hopeful that by the end of the week, we will be able to hold our son for the first time.
Some weekly updates on Eric: Eric is now 34.5 cm long (14.5 in) and has a head circumference of 22.5 cm (8.75 in). Eric weighs about 840g, or about 1lb 14 oz. Eric is up to about 14 ccs of breastmilk every 3hrs or so as well. Eric did manage to go 8 days without a transfusion, but from the numbers, he will need another transfusion today or tomorrow. Generally, Eric is slowly gaining weight and growing in size. the 4 bad days in row was very rough on us, but he ended the week with a good day.
We continue to be hopeful and positive. We appreciate all the positive thoughts people have been sending our way, as well as the prayers! Also, thanks again to all those who have donated blood in Eric's name!

Saturday, May 31, 2008
Sad and difficult day, Friday Current mood: sad
Eric had another up and down day on Friday. He started off doing better, but in the evening he was back to being up and down on his stats. He is up to 10 ccs of breast milk per feeding, which is every 3hrs. The goal is 14 ccs every feeding, but he is consistently having about 1cc undigested, so he may not hit that goal for several days. Eric's eyes open more regularly now, especially when he wants to look around and see who has the gumption to change his diaper. He definitely seems to prefer NOT having a diaper on, and puts up a fight when it comes time to trying to put the new diaper on.
On a much sadder note, Eric's podmate and neighbor, another small boy named Erik, died this morning. The other Erik (NOT our son, Eric) was born about 2 weeks ago at a tad over 23 weeks gestationally. He was about the same size as our son, but was just not developed enough to survive. It is very hard to walk into the section of the NICU where our son is and see an empty bed next to him where an a little baby had been. Our thoughts and prayers are with his mother as we only ever saw her in the NICU with her son, and never once the father.
This really served as a reminder how precious every day we have with our son Eric has been and continues to be. Even with the ups and downs, our son Eric is making some progress. He has been weaned on the ventalator to 14 mechanical breaths a minute, the rest is his breathing. The pressure is still pretty high, but the doctors want to make sure that a minimal amount of blood is coming suctioned from his lungs.
The plan in a few days is to attempt to switch Eric a different respirator called a cpap. This is a mask like device which will go over his mouth, but unlike the tubes he has there now, will not be inserted into his lungs. Since it is a mask, if it comes loose or is pulled off, it is much easier to put back on him. This will finally mean that in a few days, if all goes well, we will finally be able to hold our son Eric for the first time. To say we are excited for this would be a severe understatement.
We continue to take each day as it comes and be grateful for what we have. Thanks again for all the prayers, warm thoughts and support we have gotten.

Friday, May 30, 2008
Eric at 3 weeks Current mood: hopeful
Thursday afternoon and evening for Eric were not good. He was very active (which can be good or bad) but his diagnostic readings were all over the place. Also, one of his IVs used to collect blood, provide fluids, and give blood pressure readings stopped working, so Eric needed to have a new IV line put into him, which leaves him 1 usuable vein left (in his head). Eric's sats and stats were constantly crashing throughout the day and evening, with the worst of which requiring 2 nurses and a doctor to help get him back up with bagging (where they manually use an oxygen pump in the shape of a small bag to put air into his lungs).
Some good news was he is now up to 8 ccs of breast milk per 3 hr feeding. Also, Eric went another day without needing a transfusion. The bleeding in the lungs is intermittent now, and generally not that bad, although some clots did come up with one of the lung suctions. The other bright spot is Eric is now up to 790g of weight, which is not that much gain for this week, but it is a gain.
A bit of humor was when Joanna was changing his diaper, he decided it was a good time to poo on the new diaper that was not even finished being setup yet. What made this funny, was as Joanna changed the second diaper, he decided to pee on the 3rd diaper. Timing is everything.
For those who have been supportive and understanding, we appreciate your warmth and prayers during this period of time. We are hoping Friday will be a better day. Gestationally, Eric is now 27 weeks old.

Thursday, May 29, 2008
NICU Etiquette
This didn't happen to me but to the mother (H) with the baby next to mine.
H had a friend that came to visit her baby in the hospital. H's friend (Pest) pretty much invited herself to the NICU. Pest was only supposed to stay 10-15 minutes. Well, Pest started touching the baby and when H needed to go pump, Pest stayed. Pumping usually lasts about 20-30 minutes, including cleanup time. H expected Pest to leave while she was gone. Pest stayed and continued touching H's preemie. H's preemie is 25 weeks gestationally and was born a week ago. Pest was there for over 45 minutes.
For those who don't know, most preemies hate to be touched and those who can stand it, only can deal for a very short time. Preemie was in serious distress while Pest was touching her. That night, H's baby took a turn for the worse and the parents were called in. H's preemie nearly died that night. Luckily, everything turned out alright and yesterday, H's preemie was doing really well. Needless to say, H and her husband are now setting very strong boundaries because of that incident.
This is the reason Cris and I do not allow our baby to be touched by anyone. If we allow one person to do it, others will want to do it as well. Also, you may not see the distress signals that the baby gives out and know when to stop.
Another thing, I wanted to mention is, some people are making Eric's stay in NICU all about them. You are not the ones in the NICU every day. You do not see how fragile Eric really is. You do not watch the machines and flinch every time an alarm goes off. You are not there when his stats go so low as to need several nurses and doctors by his side. You do not stand there helplessly while he is pain because of his many wires and IVs. You do not see the blood that comes out of his lungs when they suction him. This is a very painful time for us and we are worried constantly about him. For you, his fragility is only a concept, to us, it is a reality. A very vivid and painful reality.
This is not about you and your wants and your needs. This is about Eric, and our journey with him through this ordeal. We do not have the time and energy to cater to you. You are not his mother or father and you do not know what is best for him. Please stop making demands on us and our time. The only importance in our life is Eric and his well-being.
For everyone else, we appreciate how much caring and support you have sent our way. We really thank you for your understanding and many kindnesses during this time. This post is not meant for you.

Day 20 for Eric Current mood: hopeful
Eric had some difficulties on Tuesday night and Wednesday morning, but seemed to be doing a bit better on Wednesday night. Joanna was unable to hold him and the doctors will re-evaluate Eric to see if he can be held next week, as he is still too fragile. Eric has been de-sat-ing (his saturation of oxygen in the blood) whenever his cares are administered to him, such as changing a diaper. As a result, Eric s still way to fragile to have us hold him.
The head ultrasound did come back and his IVHs while still present, are diffusing. This is very good news, as it means there is no pressure build up of blood in his brain, which can cause brain damage and brain disorders.
Eric sometimes likes to have his hand held, or a light touch on his chest or head, but it really depends on his mood that day. All the staff at UMC have been doing a fantastic job taking care of him, and sometimes taking care of us.
Thanks to everyone for their warm wishes and prayers! Special thanks goes out to those who have donated blood in honor of Eric as well. He managaed to go 5 days without a blood transfusion this week, which is awesome!

Tuesday, May 27, 2008
Eric at day 18 Current mood: excited
Sunday and Monday were on the balance both positive days and Eric has now managed to go 3 days without needing a blood transfusion.
On both Monday and Tuesday, Eric did bounce around a bit on his saturation readings (sats) more than the doctors like to see, but on the whole, Eric continued to do well. Eric is needing a bit more ventalator support than a few days ago, but the bleeding in the lungs is now much less and intermittent, so that is a very good sign. Hopefully today the staff will be able to get his head ultrasound done (yesterday was a holiday so they only did emergency ones, and not Eric's head) so we can see how his IVHs (internal bleeding) in his head are doing.
Today we are excited, as there is a chance Joanna will actually be able to hold Eric for the first time in something called Kangaroo Care. That is where a parent can hold the baby with skin to skin contact for as long as the baby will tolerate it. It is good for both the parents and the child to have this contact. This will be a real milestone for us. Nurses do have to be present since Eric is still so fragile, and there is always a change his breating tube taped to his face and inserted into his lungs could accidently come out, which is a bit scary when that happens.
Since Cris has to work the whole day, Joanna will be spending most of today with Eric and hopefully will have that skin on skin contact experience.

Sunday, May 25, 2008
Eric at day 16 Current mood: hopeful
Eric seems to continue to improve and Saturday was another good day. Saturday was the first day in like 10 days theat Eric did not require a blood transfusion, so that was fantastic. Cris finally got to assist with chaning Eric's diaper.
Eric weighed in at 760 grams with support equipment attached, so still doing well there. We did not see him open his eyes again, but we are on the lookout for it. Eric still did some surfing with his stats, but generally did well.
The video contanins some eye openings (small) and a couple of big yawns.

Saturday, May 24, 2008
Eric update Current mood: hopeful
Eric continues to improve, but still some ups and downs. Eric now seems to be pooping regularly, which is good. The medical staff seem to have gotten Eric's internal pulminary hemmorage (bleeding in the lungs) fixed. It will take a few days to make sure it stays fixed. He is on higher respirator settings to help with that as well some clotting factors. He has been needing a transfusion every day.
A really positive note was that Eric opened his eyes for the first time, and we were there to see it. We even got it on video with the new camcorder. As soon as we (and by we, I mean Joanna) figures out how to upload it, it will be available off this web site. We were very excited to say the least.
We continue to be hopeful and cherish every day, but it is very nice to see some improvements in Eric, who is now 15 days old and gestationally at 26 weeks 2 days. Thanks to all those positive wishes, thoughts, prayers, and blood donations!

Friday, May 23, 2008
Eric update, now at 14 days old! Current mood: hopeful
Eric has had a busy week so far. While Eric recovered from the surgery, he hads had some ups and downs this week. Wednesday night and Thursday night were a bit more challenging than we would like to see, but during the days of Wednesday and Thrusday, he seems to have improved.
Eric continues to have some bleeding and fluid in his lungs. The doctors has started another round of drug treatment to help stop that. To help with Eric's breathing, they have increased his oxygen delivered in the respirator, as well as the pressure and the frequency the respirator gives him breaths. The IV line in head started leaking, so it was removed last night, and Joanna got to help a bunch with that. We will take any opportunity we can to touch him, he is just too irresistable. The nurses did get another IV line started in his right leg, but it took a good 45 minutes to get it in. Eric continues to receive regular blood transfusions at about 1 per day. I think he is up to about 10 or 11 total now. Eric should get his head ultrasound on Monday to see how is IVHs are doing now that the IV is out of his head. Cris did give blood on Thursday for a directed donation to Eric, so in about 4 more days, Eric will get some of daddy's blood. :)
Eric is putting on some real weight and his fingers and toes are starting to thicken up a bit, which is very good news. His weight last night was up to about 790 grams, counting all the tubes and respirator stuff attached, but that is still a 180 gram improvement in 12 days since he was first weighed with all the equipment attached. Also of significant note and milestone, Eric has a huge poop in his diaper last night as we found out while Joanna was changing him. It was good to see him have that level of output (about 30 grams, counting pee as well). Sorry no pictures of that milestone to add. :)-
We both decided to get some real sleep last night and left the hospital before 11pm, as we both have not been sleeping enough. I will try to keep the blog a bit more updated. Look for new pictures and video to join the site soon, as our new camcorder came in. Joanna has been looking through the 180 pg manual to figure it all out, but it seems pretty cool so far.
All the well wishes and prayers and emotional support are greatly appreciated! Also all the blood donations to Red Cross as well!

Tuesday, May 20, 2008
Post-Op for PDA
The surgery went really well. The valve was completely open, so we are thankful that it was caught as early as it was. We met Dr. Copeland and were able to thank him for taking such good care of Eric. Eric's stats have already improved since the surgery, but we won't know how things will be until after 48 hours. Sometimes babies improve immediately, and other times babies will worsen for a bit.
I called at 8pm, after a much needed nap, and things were still looking good. If everything continues to go well, Eric will go back on breast milk. He is still continuing to grow and has gained a centimeter around his head. His body has grown a cm as well.

Monday, May 19, 2008
Pictures and Video
Our new camera has just come in to replace the current one that is going bad. We will be posting higher quality of pictures and the video camera has just shipped so we will be posting videos as well.
Only 10 days old and already a star!
For those unable to view pics on myspace, we have also posted the photos on PhotoBucket: no longer available

PDA Surgery for Eric Current mood: nervous
Eric will be going in for surgery tomorrow to close a valve near his heart. This is what is believed to be causing his sudden dips. His doctor will be Dr. Jack G. Copeland III, a very well-respected cardiologist. He is a top-notch doctor who has recieved many awards for his work. He has also made Arizona history by performing the first heart transplant in 1979 in the state. Eric could not be in better hands.
The surgery is for Patent Ductus Arteriosus and you can read about it here. It is supposed to be a very simple surgery and will last about an hour. It is not without its risks, especially for someone as tiny as Eric. The doctors say that the odds are slim for anything to go wrong, however it is still rather nerve racking.
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A very difficult day for Eric Current mood: hopeful
Sunday turned out to be a very difficult day for Eric. He has had a number of set backs. Having been under the lights again dried him out a bit and his last weight was 510g, which may not be accurate with all the IVs hanging off Eric.
Eric's vitals were also a bit more erratic and his heart murmur was back, so the cardiologist did an echo. While Eric's heart appears to be fine, his PDA valve near his heart has opened again. This has caused fluids to build up in Eric's lungs, including some blood. Since Eric's kidneys have not been functioning as well as the doctors would like, it is too dangerous to give him another course of medicine that might close the PDA valve (a valve that is open in fetuses, but normally closes within a day or two in newborns). Some medicine that Eric is on did improve his kidney functions a bit, but probably not enough for that.
Eric now has IV sticks in both arms and one leg. They are back to drawing blood for testing several times a day and with the bleeding in the lungs, they had to give Eric another transfusion on Sunday evening. Eric has another stick for that into his head for giving him transfustions, as can be seen with the latest pictures. He did respond well to that. Eric may have developed an infection, so a culture test is underway to see if he has. After 24hrs, Monday morning) we should know. Eric was put on another dose of antibiotics as a precaution on Sunday.
IF Eric does not have an infection, he will almost certainly have to undergo surgery today or possibly tomorrow to close his PDA duct. While this is a routine surgery performed on preemies and is very close to 100% successful at closing the PDA valve, it can be very hard on the already stressed tiny body. Eric was very tolerant of the IV sticks that he got yesterday as well as the scanning equipment and chest xray. Eric is one tough baby! The chest xray showed that there has been quite alot of fluid build up in Eric's lungs, which is which he is back up to about 35% oxygen and the ventilator settings have been raised to help with his breathing. Closing the PDA will hopefully take care of the lungs, and the kidneys, as with the valve open, most of his blood is going to his lungs and not the rest of his body. It should also help with his low blood pressure (about 30/17 for much of the day) and will allow him to be fed breastmilk again.
If Eric does have an infection, then he would have surgery once the infection is gone, probably on Wednesday or Thursday. The operation typically involves opening up an inscision on a baby's side, pushing the lung out of the way, and then tying off the valve that is right next to the heart. While the heart itself is never operated on, the work to be done is right next to it. Eric will have to be put under completely to do the operation, and that also has its risks, but we are very hopeful. UMC has plenty of experience doing this kind of operation as about 20% of preemies typically have it done. The OR is just down the hall from the NICU, so Eric will not have to go far and if there are no complications (rare that there are), then Eric should be done witht he surgery in about 30 to 60 minutes.
Eric got moved out of his pod and onto a warmer table under a heat lamp. This means it is easier for Eric to be worked on and touched. A positive note for Eric is that his skin color is back to a healthy pink and he is out from under the lights again, so hopefully he will be able to retain more fluids. His jaundice seems to have cleared up for now. They did give him some extra platelets to help with the bleeding in the lungs (most likely caused by the respirator being jostled from all the other things or possibly some seepage because of the extra blood flowing to his lungs), but his clotting was working normally based on the IV sticks he had.
Monday and Tuesday will be critical days for Eric. We are hopeful, but also pretty scared, as Sunday Eric had 2 dedicated nurses the whole day, and quite a bit of attention from several other nurses and the two doctors on shift. We continue to appreciate everyone's concern, support, positive wishes, and prayers. A special thanks also goes out to everyone who has donated blood in honor of Eric!
I will update this as I can, so keep checking this web site.

Sunday, May 18, 2008
Day Nine
There were some minor, but expected setbacks yesterday. Eric is back under the lights for the jaundice. Also, he is doing what is called surfing. His oxygen levels are going too high and then too low. He did stabilize a bit when I did a very light massage on his back. He seems to need Mommy's touch and will usually calm down when Cris and I are there.
Still no word on when we can start Kangaroo Care. Kangaroo Care is when we hold him with skin to skin contact.
His feedings are going well and he is gaining a little weight. Cris got to feed Eric for the first time yesterday. Cris was very excited as you can imagine. Eric did lose some fluids, but that is more likely to do with the lights dehydrating him a bit. The nurses are compensating by adding more fluids to Eric's diet.

Hospital Visitors Current mood: hopeful
Like all new parents, we are always willing to share how wonderful our child is. Visitors are always welcome to visit Eric in the hospital. However there are some rules that everyone needs to follow for the safety and well-being of all the babies in the NICU.
1. Eric is only allowed 3 visitors at a time. This includes parents. Also, you cannot visit Eric without one of us being present. We are willing to rotate people in and out of the NICU with others waiting. If you would like to visit, please let us know a couple of days in advance.
2. During visitations, please turn off your cell phone. Not only does it disturb the other parents and nurses in the NICU, the cell phone can cause problems with some of the delicate machines needed to take care of our fragile babies.
3. Please do not ask to touch Eric or take pictures of him. He is what is called medically fragile. We are not allowing other people besides us and the medical staff to touch him. Even the gentlest touch can hurt him and the more people that touch him, the higher the chance of him picking up something and getting sick. We, as the parents, are able to touch him because we have been trained by the hospital on what is the best way to do so.
4. Please do not bring your children. Only siblings of the patient are allowed.
5. Visiting hours are from 8am to 8pm, but no one is allowed in there from 6:45 to 7:45 because of shift changes.
6. Please keep voices soft in the NICU. The babies do not like a lot of stimulation.
7. Please do NOT visit us if you are sick. We cannot afford to get sick right now and we certainly do not want to have Eric get sick.
We are also not up to visitors at home. We spend most of our time in the hospital and we do not have the energy and resources to entertain at home. Again, thank you for your well-wishes and support. We appreciate your thoughtfulness and consideration in this matter.