Monday, June 16, 2008
Father’s Day
Eric was down to 14 breaths, but high on the oxygen levels. He did mostly well though on it and rarely desatted enough to make us nervous. The hospital was really sweet and gave Cris a t-shirt with Eric's actual footprints. We hope to get a pic with Cris in it. We spent our dinner with a couple of other families. They brought pizza and we brought in homemade cookies.
Unfortunately for Cris, his son refuse to cooperate and give Joanna a poopy scene the way he did for Cris. HAHAHA Also, Cris didn't want to hold him because he didn't feel comfortable with Eric surfing the stats and is taking a raincheck.
Hopefully, next week he will be comfortable enough to be able to hold Eric. By that time, Eric might be on CPAP but the chances aren't that high. Right now because of the way things are, Eric has what is called BPD.
Bronchopulmonary Dysplasia (BPD) occurs when a baby's lungs have shown evidence of deterioration. Unfortunately, when preemies are put on a ventilator (also known as respirators) their lungs are still immature and sometimes can not withstand the constant pressure of the respirator. Preemies that have been on a respirator for more than twenty-eight days are at risk for developing BPD. Preemies do recover from this but it may take some longer than others. http://ezinearticles.com/?Bronchopulmonary-Dysplasia-(BPD)-or-Chronic-Lung-Disease-in-Your-Premature-Baby&id=209828
Essentially it means that because of the ventilator and Eric's gestational age and weight at delivery, the use of the ventilator is causing him problems. It will take longer to get to CPAP, but it will happen. Depending on the amount of damage to his lungs, he may come home with oxygen. Worst case scenario, he stays on oxygen until the age of 2. Most lungs have healed by then and he shouldn't have too many long-term effects.

Sunday, June 15, 2008
Eric on Day 37, Saturday Current mood: amused
Today was a decent day overall. Eric is still surfing quite a bit, but they have his respirator down to 16 breaths. The doctors are going to continue to lower it slowly until they try Eric on the CPAP again. Eric's thyroid test came back a bit low, so they will retest again in two weeks. There are a number of reasons a premiee baby Eric's age might not have a fully functioning thyroid, but gestational age is the most likely reason. We are hoping that will clear up. Also, Eric's eye exam was too fuzzy to give a good idea of how his vision is, so they will do another one this upcoming week.
Eric continues to tolerate his feeds well and digest them. In fact, we wanted to show Eric when he is older just what is involved in his 3 hour cares at this point, so we had his nurse Melissa J. video record us as we were doing his cares. MySpace will not let us upload the video (size and large amounts of naked baby imagery), but it is a very funny video. During his diaper change, as we had his 2nd clean diaper under the dirty diaper and then removed the dirty diaper (just pee in it, but 50g worth of pee, because of the diuretic he is on) is when the fun really began. As we were finishing wiping his butt (all on video), Eric decided to have his bowel movement. Since this happens alot, we were not that surprised. Also, since quite a bit came out, after we wiped him down, we replaced dirty diaper 1 with clean diaper 2. Just as that was done, Eric decided that it was really time to empty his bowels and did a massive (for him) bowel movement. Again all on video. We wiped his butt again, made sure he was done for the moment and then replaced dirty diaper 2 with clean diaper 3. While we were getting ready to vasaline his behind, Eric clearly was not done with his bowel movement, He seemed determined to shed a significant amount of body weight during his cares. As he continued with his bowel movement, aparently he had some gas and a large chunk of his bowel movement went sailing toward the camera (protected by plexi glass) and (un)fortunately caught on Cris' other hand at the base of the incubator. The distance would impress any shot putter out there, and the video captured it all. After this bowel movement was done, and his bottom wiped again, we changed dirty diaper 3 with clean diaper 4. Joanna was laughing so hard, she almost needed a diaper. As diaper 4 was going on, it looked as if Eric apparanently had an endless supply of material to dispense, as his butt was puckering for yet another performance. The nurse said to just hurry it up and seal up his diaper, in between laughs. Cris then did just that, with Joanna helping as soon as she could breath between the laughs. In record time, he was all diapered again. Afterword, we had to change his bedding, as not all of the pieces made it as far as Cris' other hand. We are thinking this will definitely be a first date video when he does not come home on time from a date, 16 years from now.
We continue to be hopefull that we will be able to hold Eric later on this week as he settles down. Perhaps Cris might even be able to hold him for a few minutes on Father's day??? As a side note, part of his 9pm cares that night (when the video was taken) was weighing Eric. Even after his 3 full diapers, Eric weighed in at 990grams, a 10g gain from the previous night.

Saturday, June 14, 2008
Eric on day 36 Current mood: hopeful
Today was another up and down day for Eric. He was surfing on his sats pretty hard most of the day and evening. Eric is back up to 980grams, which is about 2lbs 2 oz. The NICU was busy with a bunch of new arrivals and it was pretty noisy most of the day, so that probably did not help.
Eric is at 18 breaths again, as they try to wean him down from the respirator again to try for the cpap again next week. When he has been suctioned, there has been a fair amount of mucus coming out. This most likely is caused from the respirator tube irritating his lungs or the fluid in his lungs. Eric continues to handle his feeds well.
One of the senior nurses spent some time with us explaining some of what Eric is going through. Basically, lungs are among the last parts of a baby to mature, and for Eric this is especially true being born so early. All premiees born under 29 weeks develop what is called chronic lung disease. It is caused by the respirator that keeps him alive. The good news is that in almost all cases it does go away as the child gets older, it just takes some time.
We continue to be hopeful and look forward to when we can hold him again.

Friday, June 13, 2008
Day 35, some setbacks Current mood: hopeful
Eric had an up and down day on Thursday. The doctors tried to move Eric to the cpap, but after an hour it was clear that his lungs are still not ready for it. Eric as was a bit stressed the night before and agitated, so we are sure that did not help. When they reintubated Eric, the doctors decided to go with the next larger breathing tube, the 3.0 mm tube, so that should reduce air leakage.
Eric is back up to 20 breaths per minute again, and last night was surfing a bit on his sats, as well as riding the respirator. Riding the respirator is when he lets the respirator do all his breathing for him. The docotors have decided to continue the diuretic on Eric seems he has made some progress with it, but it does dry him out more. Eric is back down to 950g of weight (2lb 1.5ox) which is probably a more realistic weight for him, and still good overall gain in the last week. Thursday Eric hit the 5 week mark, and overall the trend lines have been good. We just have to remember the Eric will have bad days as well.
We continue to be hopeful and confident that we will be able to bring Eric home, hopefully by September.

Thursday, June 12, 2008
Day 34 Wednesday Current mood: grateful
Eric had some ups and downs Wednesday, but on the balance it was a good day. Eric continues to gain weight and is over 2lbs, 4 oz now. Joanna did get to hold Eric for a few minutes on Wednesday, but Cris was at work at the time, so no photos of that.
Depending on how Eric does today, the doctors might try Eric on the CPAP, if things go well. That would be a huge step forward, one that we are really looking forward to as well. Overall, Eric has really improved this week, and you can tell as his eyes open more and he seems more alert.
Eric has an eye exam coming up, to help see if he has any eye issues (common for premiees of his age, and the oxygen required to keep him alive). More on that when we know more ourselves. We continue to count our blessings and we are so happy Eric is doing much better now, words just can't describe it.
Thanks to all for their well wishes and prayers, I am sure that did not hurt one bit!

Wednesday, June 11, 2008
Tuesday Eric report Current mood: happy
Eric had a surprisinly good day on Tuesday. The diuretic seems to be working well and his lungs are improving. His blood gas was so good, they dropped his mechanical breaths down to 12 per minute, which is fantastic! Eric enjoyed sucking on his binky more as well. Some other good news: his weight is up to 1kg, which is 2lbs and 3 oz. That is huge progress and almost double what he was born at. Eric definitely seems to be tolerating his feeds quite well.
If Eric can stay at 12 breaths per minute for today and his blood gasses look good, they will try the CPAP respirator on him again. This would make it much easier to hold him on a regular basis. Joanna did get to hold Eric for a few minutes yestersday, in his incubator, while the nurses changed out all of his bedding. Eric has been peeing so much with the diuretic in him, that he overflowed the diaper, and soaked his bedding. Eric has been moved up to the normal preemie diaper now, not the smallest one they have, in hopes that it will hold more.
We continue to be greatfull and hopeful, and look forward to every day we have with Eric.

Tuesday, June 10, 2008
Progress Current mood: chipper
There was quite a bit of progress yesterday.
All of the bleeding in Eric's head has gone away completely. They verified it with an ultrasound.
He is now on diuretics to, hopefully, drain the liquid from his lungs. They will be doing that for 3 days.
His weight has gone up to 940grams. They have also increased the amount of his feedings since he is doing so well. Many babies have difficulty with feeding time, but Eric is thriving and wanting more. He is now up to 18ml. per feeding. If anyone was somehow confused about his paternity, this should clear it up!
The respirator is now doing 18 breaths for Eric and they will continue to decrease by one increment per day. The goal is to get it down to 12 so that Eric will be able to get on CPAP.
The best part was when he used a binky (pacifier) for the first time. Since he was doing so well with it all day, the night nurse put some breast milk on it. This is a particulary good milestone because sucking on a binky will help him get ready for breastfeeding later on. It will also strengthen his lower jaw to help him keep it closed. When he was on the CPAP, being unable to close his mouth caused him to desat since he wasn't able to keep his pressure up.
Another benefit to the binky, Eric became fully awake for the first time. The night nurse explained that this is the age where he needs to start being awake a little bit more, instead of either asleep or mostly so. During his waking periods, his eyes were completely open and would slide upwards whenever I spoke to him. He can only see about 6 inches, but he is making the motions to track me with his eyes.
We did get him a couple of different binkies, but they are still too large. Eric will be using the one from the hospital for now.
No word yet on the next time that I can hold him, but they are feeling more confident and relaxed about it.
We are in the process of finding Primary nurses for Eric. These will be dedicated to Eric's care and only they will be taking care of him. This will help with consistency. So far, the night shift is covered. Unfortunately, our favorite day nurses moved to night shift.
That concludes today's report. Thank you for your continued well wishes and prayers.

Sunday, June 08, 2008
Sunday Eric Report Current mood: excited
Eric had a great day today. He is still surfing on his sats a bit, but overall a much better day. His nurse for today (Ellen) thought he was stable enough to have Joanna hold him for the first time today. Joanna was able to hold Eric on her chest for 15 minutes! While Eric could not tolerate being outside the incubator for too long, it was a monumental milestone for us and an appropriate 1 month baby gift. Plenty of pictures about the event with the 2 nurses standing by just in case. Words cannot express the joy felt as Joanna was able to cradle Eric.
Also of special note and thanks, Sunny (a friend from one of the message boards Joanna belongs to) dropped by for a very brief visit to drop off a signed booklet/card from the many, many people on that message board. It was extremely thoughtful and appreciated. Thanks to all who signed the card and everyone else who has been so supportive during the last month. It most definitely is appreciated.
We continue to be hopeful in Eric's long term outlook. Eric is now up to 870 grams in weight or about 1lb and 15 oz. Joanna's comment about Eric was that he was so light, he felt like a feather. We definitely look forward to the day when Eric can be held again, perhaps in a few more days.

Eric at day 30 Current mood: hopeful
Eric had a decent day on Saturday. While he was still up and down, it was not as bad as it was on Friday. The discharge from his eyes on Friday seems to have cleared up as well. Eric does seem to be holding down his feeds and that is a very good thing. Eric is up to eating 4oz per day of fortified breast milk.
We did put Eric into one of his new outfits and he looks even more adorable! He did put up a fight when it came to having it put on, as he seems to prefer being naked. The blood transfusion from Friday seems to have helped his energy levels as well, although he slept more on Saturday.
We continue to be hopeful and postive. With luck, if things will go well long enough, we can take Eric home at the end of August or beginning of September. For right now, we are just taking it one day at a time. Be sure to look for updated photos of Eric in his new clothes. We will try a different outfit today.
2 months 2 weeks & 6 days until our baby is home

Friday, June 06, 2008
Eric’s New Clothes and Other Updates Current mood: happy
Eric's new clothes came in today! They are too cute and we look forward to dressing him. Hopefully we can start tomorrow. He is going to one stylin' baby.
He did have a blood transfusion today, but we were expecting that.
They have him on aerated steroids in his breathing tube which is better than the IV steroids. Fewer side effects in the long run. They are hoping this will help in getting his lungs to mature. Usually they give the mother of a preemie two shots of steroids before the baby is born to mature the lungs faster, but since Eric insisted on being born that night, there wasn't a chance to do that. He ended up only getting one shot in the womb before being born four hours later.
Today was a better day overall and we are trying new techniques during diaper changes. With luck and perseverance, we may be able to do cares without him desating so much.

Thursday, June 05, 2008
Eric day 28 Current mood: worried
Eric had some serious setbacks today. The doctors had to increase his mechanical breaths by another 33% and increase his pressure and volume as well. Eric's lungs are definitely not doing as well as we had hoped. He is back up to 20 mechanical breaths per minute which is where he was 2 weeks ago. The doctor ruled out using some steroids for now on his lungs, as she did not think the benefits would outway the long term risks. Currently, we have no estimate on how much longer he will need to be on the respirator, but even with the higher settings, Eric does not tolerate diaper changes well. Even the doctor was dismayed and worried.
Eric is also down a touch on weight, but that could be normal fluctuations. Most distressing of all, is the inability to hold him even though he is 4 weeks old and gestationally 28 weeks. While some surfing in premiees is to be expected and normal, he still seems to be taking some big ups and downs. With the higher respirator settings, there are concerns about lung damage, but Eric currently needs the higher settings. We are back into that catch 22.
Today was just plain difficult and frustrating for us. We continue to be worried and concerned about Eric. More to come as we head into the weekend.
There was one positive and that is the yeast infection has gone away.

Eric on day 27 Current mood: hopeful
On Wednesday, Eric took a big step forward. They have now removed the last of his IV lines, which means that he can wear the clothes that Joanna picked out for him (which are very cute) once they arrive. Eric continues to take his feeds and is now at 15ccs of fortified breast milk (at 24 cal per oz) every 3 hrs.
Eric also took serveral small steps backwards on Wednesday. While they were able to lower the pressure settings on his ventilator, they also had to increase his rate by 25% that the ventilator gives him breaths per minute. We continue to hope that they will be able to wean him far enough down on the ventilator that they can switch him over to the CPAP respirator in the next few days or so. We really still cannot hold him until they are able to put him on the CPAP since his air tube is so fussy and he crashes so easily with the most minimal of movements. The downside with the respirator he is on, is that it does damage his lungs. It is that catch 22, without the respirator tube, he cannot breath, but with the tube, his lungs are damaged. We are hopefully the long term effects will be minimal.
Eric did scare us a bit in the evening with his oxygen sats dropping into the high teens and staying low for a bit. Fortunately he did not look that blue, so it was not as scary as Monday or Saturday. He continues to surf his sats (going low and then bouncing back) pretty continuously for most of the day. Eric still does not like his diaper being changed, but we have come to recognize his facial expressions when he decides it is time to refill the diaper.
On a side note: Joanna was at first bummed that she only got an ambulance ride from NW hospital to UMC (11 miles as $750) as the helicopter would have been much cooler. Another mother with a baby in the NICU did get a helicopter ride from NW to UMC and shared with us how much the bill was. They charged her $650 for the ambulance ride to the helicopter pad (fraction of a mile) and then $11,000 for the 11 mile flight to UMC. The 11 miles is not as the crow flies, but driving distance. Needless to say, Joanna is no longer bummed about NOT getting the helicopter ride.
Eric is gestationally 28 weeks today and will be 28 days old on Friday. He has really come a long way, but there is still such a long way to go. We continue to be hopeful, and we long for the day when we can hold him for the first time and take him home.

Wednesday, June 04, 2008
Preemie Clothes Current mood: amused
We've (and by we, I mean me -Joanna) have been scouring the web for preemie clothes. We went to Babies R Us, Walmart and Target looking for preemie clothes. They are all too big! They are all for 5 pounders and are waaay too big for Eric. But I found some cute outfits online. The nurses say that he will be able to wear clothes very soon now that they are taking more and more tubes and IVs out.
We (again I mean me) found a scrapbooking site that does memories for NICU babies. Very cute and I can't wait to fill out his scrapbook for him. They even have a NICU bill sticker. However, it is much too short! Thank heaven for insurance!
Side note - Cris's lullaby for Eric is Three Dead Gerbils On A Trampoline. They are so not letting us take him home. Especially when he tells them that zip ties and duct tape are the world's best baby sitter.

Eric day 26 Current mood: hopeful
Eric had a mostly good day today. He was still a bit of a roller coaster on his sats and stats, but it was better then yesterday. Eric did lose a bit of weight, but that is part of his normal daily fluctuations. Eric is down to 12 mechanical breaths a minute, with the rest being his. He is still too fragile to hold, but the doctors think that they might be able to try the CPAP ventalator on him again in another day or so.
Eric is doing well on his feeds and is up to 15 ccs per 3 hrs. They are adding in some calories to the breast milk to beef it up to 24 cal per ounce level (normal breast milk is 20 per ounce). Hopefully this will help Eric put on some more weight. He is definitely pooping more.
Another bit of good news is that Eric seems to finally be developing a butt. He is finally starting to get a butt crease, where before it was just a round bottom with a poop hole in the middle. This is a good indication that he is indeed gaining weight overall.
We are hopefull that Wednesday will be another good day and that they will be able to wean Eric down far enough that he will be stable on the CPAP when they try him on it again.
Joanna's note - if you haven't figured it out, Cris writes some of these, like this one for instance.

Tuesday, June 03, 2008
Eric on day 25 Current mood: hopeful
Eric started Monday off with a big scare. He managed to remove his respirator tube with hand during the shift change with the nurses. He has quite a strong grip and we have had to put a sock on his hand to reduce his ability to pull out essential tubes and wires. As this was another unplanned extubation, it took some time to get another air tube into him. He still has a fair amount of mucus and that has been clogging up his air tubes as well, but this tube was only in him for less than 2 days and was not that clogged.
Eric continued to do some heavy surfing all day on Monday where his stats and sats would dive down into the 40s and then he would need more attention to get back up. Needless to say, Monday was a rough day for us, but by the end of the evening, he seemed to be doing better. His blood gases have been coming back better so they are back to slowing weaning him off the respirator, if only he will keep the air tubes in long enough.
Eric was not in a touchy mood on Monday and did not want to be touched much. He was very active with his kicking and grabbing things, even with a sock on his main hand. Time to buy more premiee socks... need about a Ken doll size or so. Unfortunately most premiee clothes start at about 5 lbs, which is way to big for Eric. We did get some small stuffed toyes for him to grab on to, since he seems to want to grab onto things so much. Who though beanie babies could actually have a medical purpose?
We continue to be hopefull that we will get to hold him by the end of the week for the first time, provided Eric does not experience any more major set backs this week. His yeast infection is starting to get better as well and his belly cord finally fell off a couple of days ago, so he now has a belly button. More to come later....