Finally! I am done!

Wednesday, July 30, 2008
moving
changing blogs for privacy, will send links to those who need it

Tuesday, July 29, 2008
Day 82 Current mood: blessed
Eric is still on the nasal cannula. They are trying something different this time. He is on 2 liters of flow. Last time he was on 1 liter. Eric will need to be weaned down to about .25 liter before he can come home. His lungs just need to mature enough to release the carbon dioxide. Think of his lungs like a balloon, they expand and deflate as he breathes. In Eric's case, they stay deflated when they should be expanding and releasing the CO2. Lungs are always the last thing to grow in the womb. The thing to remember though, is that even though Eric is at 35 weeks gestational age, it is not the same as if he was born at 35 weeks. He may have to go back on the CPAP again and that is normal.
His feeds have been reduced from 26 calories to 24 and he is getting a different supplement. It isn't as thick and hopefully will help with his constipation problem. Too much backup can result in intestinal problems later on. The amount of feed has increased from 36 ml to 41 to adjust for his weight, which is now 4 lbs 15 oz.
Eric gets another eye exam today. Last time it was still the same. Not worse or better. His head ultrasounds still show the bleeding in his head to be resolved.
His thyroid is not doing so well and he is now on medication for it. Eric needs the thyroid meds to help his brain development. The endocronologist says that Eric will need it the medicine for about 2-3 years, maybe longer. Eric is right at the threshhold, so it is not severe, just very mild and we would like to keep it that way.
For those who have asked: Abigail is doing some backsliding. Her mother had her baptised just in case. Prayers are still requested and are much needed.

Saturday, July 26, 2008
Quick Update
Change of plans. Eric's doctor has decided to put Eric back on the cannula on Monday. He now weighs 4 lbs 10 oz. He is quite the chunky monkey. We may regret it later, but right now we are glad that Eric has his daddy's appetite. The bigger he grows, so do his lungs.

Thursday, July 24, 2008
This weeks stats - 35 weeks gestational age Current mood: blessed
Length: 16.5 inches
Weight: 4.6 pounds
Head circumference: 11 inches
To answer other questions asked: Yes Eric does cry, rarely and not very loud. It is usually when he is cranky and voicing his opinion, when he wants to be snuggled, and when he is being poked and prodded. He started crying the day they took out the ventilator tube. He gets louder every day as his lungs mature.
The feeding tube goes down through his mouth and into his stomach. For now, while he is on CPAP. The CPAP pushes a lot of air into Eric's stomach and the tube helps to vent it out. The CPAP is either a mask or prongs that cover his nose. They rotate the mask and the prongs to give Eric's nose a break. When he gets back onto the cannula, it will go into his nose, which will make breastfeeding easier.
No, he can't go on a bottle. We tried the lactation consultant recommended Adiri bottles, which are shaped and feel like a breast (to prevent nipple confusion). The bottles still go too fast and nearly drowned him. It also made him desat and brady. He is happy using the real thing and prefers it. It is going better when he is awake and he is up to 5ml when he tries. It is a learning process for all of us.
Eric still hates his diaper changed. He also likes to "help" during cares and treatments. He needs to be swaddled tightly during those times. We are trying to help the nursing staff out by getting him some swaddlers and that is working out.
Right now, they are weaning Eric off of the CPAP. He goes onto the cannula for two hours a day for feedings. They are taking it slowly since he didn't do too well with it last time. Eric's CO2 levels are staying pretty good and his doctor is thinking of giving Eric more time on the cannula by this weekend.
They were talking about putting him back into the crib soon since Eric is back to maintaining his temperature.
That's it for the lastest updates. Hopefully, your questions were answered. If you have any more, just let us know and we will try to explain to the best of our abilities. Thank you for your support and well wishes.

Tuesday, July 22, 2008
Progression
Eric is getting to be much stronger. His noggin is now 28 cm in circumference and he weighs about 4 pounds 4 1/2 ounces. He is doing his best to be a big boy.
The bigger Eric gets, so do his lungs. He still has chronic lung disease (CLD) from being on the ventilator so long. They did another blood gas this morning and Eric's CO2 was 62 (average for Eric and common when babies have CLD) and a 7.4 pH. After Eric has his eye exam today, his PEEP (air pressure) will be turned down from 5 to 4.
We are still trying to breastfeed him. Somedays he is awake for it and he tries to nurse, others he just wants a nuzzle. Last night, Eric was able to get 4 ccs after 30 minutes. Quite an improvement from only 1 cc in the same amount of time. His feeds are 35 ccs and they just subtract the amount he is able to get. They keep him on the nasal cannula while nursing and then put him back onto the CPAP. The doctors want to limit the cannula to 2 hours a day max so that Eric is able to keep his oxygen reserves. They did a blood gas this morning.
Despite regaining the ability to maintain his temperature, the doctors are keeping him in the incubator. They are moving very slowly with any changes since Eric doesn't care for too much at once. He has a very noisy neighbor next to him and the incubator helps to insulate him from the noise. Eric does seem to be losing his sensitivity to lights and sounds. That was an earlier problem for him, as the slightest disturbance could disrupt his sats.
The reflux seems to have mostly disappeared and so have the bradys (when his heart will dramatically drop from normal 165 to a terrifying 30). While his heart rate would be too high for an adult, it is normal for a preemie. The bradys still happen occasionally, but they are not as dramatic nor as often.
It is always a joy to come in and see him. Eric continues to amaze and delight us. We are truly blessed.

Saturday, July 19, 2008
Hospital Rules for Visitation
Just a gentle reminder:
There are rules regarding visitors that are mandated by the hospital. 1. The NICU – let visitors know that when they go into the NICU rooms, they need to act is if your baby is the only baby there. People are naturally curious about babies and given the openness of most NICUs, this idea can be really hard to understand. Explain that patient privacy is important and this rule is in effect for everyone.2. Children - Only the siblings of the child in NICU are allowed. 3. Visitor Limit - There is a 3-person bedside limit and one of those must be a parent. 4. Being Healthy – Everyone you know will be excited to see your baby. As the parent, you need to make sure that everyone realizes that keeping your baby healthy and germ-free is important. People have different ideas of what healthy means – maybe they were coughing earlier but now they are fine. Or their kids are sick but they don't have a cold. If someone has experienced cold symptoms or has recently been exposed to someone with a cold, they should wait to visit your baby. This can be really hard to explain but if a baby gets an infection, it can be fatal. 5. Washing – The NICU require you to wash and scrub your hands before entering. Make sure that all of your visitors do wash their hands. This will help keep your baby healthy.6. Smokers - All smokers are required to don a hospital gown to protect the developing lungs of the babies in NICU.7. Cell phones - 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 the fragile babies.8. Visiting hours - are from 8am to 8pm, but no one is allowed in the NICU from 6:45 to 7:45 because of shift changes. Our rule:Please do not ask to touch Eric or take pictures of him. He is still considered medically fragile. We are not allowing anyone except for us (the Parents) and the medical staff to touch him. Even the gentlest touch can hurt him or upset him if he is having a bad day. Also, the more people that touch him, the higher the chance of him picking up something and getting sick. Our child's well-being is more important than anything else to us.

Pictures
Pictures have been placed in private mode. We have had some problems with some viewers and we are trying to prevent future issues. There is a slideshow on the homepage.

Friday, July 18, 2008
Eric at 34 weeks gestationally, day 70 Current mood: tired
Eric had a much better day on Thursday. He is still in the incubator and still on CPAP for the most part, but his CPAP pressure is down to 5. His blood gas on Thursday looked much better, with CO2 down to 60 and pH at 7.4 as well. Eric is slowly being weened on the oxygen on the CPAP, down to around 30% now. Eric had fewer Bradys and none were serious on Thursday, which is great news. Hopefully once the Bradys taper off a bit more and Eric gets a bit better, he will go back to nasal cannula again.
In some of the updated photos Eric is on nasal cannula and we thought we would explain that. When Joanna is trying to breastfeed Eric, he needs the tubes out of his mouth. What the nurses have been doing is putting Eric on nasal cannula for that at the highest flow rate it goes, and typically at around 40-50% oxygen. This helps give his little nose a break as well, from being squashed by the CPAP. That is why there are some pictures with him on the nasal cannula. Eric is learning to latch on and did spend 45 minutes trying to breast feed. He has the instinct, but not the stamina or sucking power just yet, as in that time he only got about 1 cc. He just needs more practice, but he will get there.
Eric is now 10 weeks old, and we are very greatful for all the progress he has made in that time. Eric has now crossed the 4 lb mark, at 1830 grams. We also spent some time talking to his nurse last night, who was in on the delivery team for Joanna, and she made it very clear that Eric was weighed several times when he was born, and really was only 450grams at birth. Anything below 500 grams is considered not viable and will not be attempted unless the parents ask for it, which we did. Eric is definitely our miracle baby! Thanks for all the prayers and well wishes, as we are sure that has made a difference!

Wednesday, July 16, 2008
Some more setbacks for Eric, day 68 Current mood: worried
Eric had some more setbacks on Monday and Tuesday. On Monday, Eric had to go back to CPAP because his CO2 in his blood was up to 92% and his pH was down to 7.25, which was way to high for the CO2 and too low for the pH. Eric definitely does not like the face mask and tubing that goes with the CPAP though.
The doctors discontinued the lasic medication which was a dieuretic for reducing fluid in his lungs, as it appears Eric no longer needs that, so that was good news, but Eric is on higher oxygen settings which is not so good. His pressure on the CPAP is at 6. Eric has also been off the caffine for 5 days, which has reduced his reflux, but Eric does Brady at random times and after feeds, sometimes quite hard. We were able to hold Eric several times on Monday, definitely a plus.
On Tuesday morning, Eric's pH was up to 7.37 which is good (7.3 to 7.5 is the target range for his age), but his CO2 was still at 75%, which is still rather high. For preemies Eric's age, they prefere to see CO2 levels in the blood between 40% and 65%, but Eric is still recovering from Chronic Lung Disease caused by the ventilator he was on for over 7 weeks and his age. This means that Eric has a higher level of CO2 and it is tolerable for him, but even so 75% is a bit high. We hope to see that come down with his blood gas test set for Wednesday morning. The pH indicator is more important than the CO2 level though.
Eric continued to have some serious Bradys (where his heart rate slows way down), including some where he needed to be stimulated and bagged to get him back up. This scares us and greatly concerns us as parents. Just after his noon cares, Eric was unable to keep maintaining his body heat, so he was moved out of his crib and back into an incubator. Also, his oxygen was back up to 40% along with the higher pressure of the CPAP. This is a big step back, at least to us as parents. The doctors and nurses say this does sometimes happen, and when preemies like Eric take a step back, they can take a big one, but they are still optimistic.
Eric did have his eye exam, and his ROP is still at stage 2 in zones 2 and 3, but fortunately has not gotten any worse. Something else to keep a close eye on (pun intended) as they continue to do weekly exams. We hope it won't get to stage 3 where surgery might be required. Eric also has a surgeon scheduled to look at him Wednesday to evaluate his scrotum. Eric's scrotum is filling with fluid and is enlarged, but currently the doctors do not believe it is a hernia. A hernia would require surgery to close, and that is definitely something we don't want Eric to go through. Something else to keep an eye on.
In other news, Eric's podmate also had a cranky day, but otherwise has been doing okay. She has come a long way as well in the last 2 weeks from where she was, but still has a long ways to go.
Tuesday was a very lonnngggg and stressful day, but there were some positives. Joanna was still able to do some Kangaroo care with skin on skin contact with Eric, and Eric did very well for that. Eric is up to 31ccs every 3 hrs on his feeds which is good, as well as up to 1790 grams (but this may not be accurate, as it is the scale in the incubator, and not as reliable as the stand alone scale) which is nearly 4lbs. Eric was also able to nipple a bit while being gavage fed, which will help him learn to breast feed. We continue to be hopeful, if a bit worried and stressed. Eric celebrates 10 weeks out of the womb on Thursday, and we have to remind ourselves just how far the little guy that stole our hearts has come in that time. Thanks for the all the happy, positive thoughts and prayers!

Monday, July 14, 2008
Delays Current mood: disappointed
Eric went back on CPAP around midnight. His carbon dioxide levels were too high for him to continue on the nasal cannula. This will delay other areas such as being able to eat without the feeding tube and he has to be off the CPAP to come home.
All being well, this will only be a temporary delay. His lungs may just need some extra time. We will continue to get things ready for when he comes home. It still looks like he will come home at around his orginal due date, August 28th, barring any unforeseen circumstances. It would be nicer for him to come home sooner, of course. He continues to make progress and we are grateful for him everyday.

Sunday, July 13, 2008
Concerns Current mood: distressed
We have discovered that Eric hasn't been getting all of his breathing medications. He has missed more than a few. We have spoken to several people regarding this and they are investigating the situation. It is hoped that not too much damage has been caused to Eric. He needs the meds to help with the damage caused by the ventilator. With all of the changes he has gone through, missing the meds has caused Eric to regress in some ways.
Most of the staff at UMC are wonderful people, it is the ones who are not that are causing us concern.
I won't go into detail here, but we are doing our best to resolve the situation.

Saturday, July 12, 2008
Sooner Rather than Later Current mood: chipper
It looks like we will have to bump up our schedule for getting the house ready to take Eric home. He may actually come home in a month, maybe even less.
Yesterday they took him off of CPAP and put him on the nasal cannula. A nasal cannula is tubes going into his nostrils that breathes supplemental air in. He is at 40% oxygen with that. He might have been better, but he missed a treatment. Need to talk to someone about that! He is still on the cannula despite missing the treatment. Check out the pictures, you can now see his face quite clearly. No more squished baby face.
Eric can go home on the cannula, but he has to be eating without the feeding tube. So we started breastfeeding yesterday as well. Unlike many babies given the breast for the first time, Eric knew exactly what it was for. He was able to nurse for 3 minutes and get 2 cc of milk the first time. He nursed again at his next feeding 3 hours later and was able to nurse for 15 minutes, but didn't get as much. Right now, he still has preemie suction, not terribly strong, but he is improving. It just takes time.
When Eric is able to consistently get milk out (and they will check his stomach each time), they will look to reduce the use of the feeding tube, eventually phasing it out altogether. There will be some feedings he will just be too tired for. Since he did really well with understanding what he was doing, it is a very postive step. Even full-term babies can have problems the first few times.
We spoke to the lactation consultant and we will be getting the Adiri bottles for when Joanna is not there to nurse Eric. The bottles are shaped, and feel, like a breast and it will help reduce nipple confusion. It will also help Eric get stronger in his sucking if he is doing it at each feeding.
Current stats on Eric:
weight: 3 lbs 8 oz
length: 15.5 inches
hair color: blond, might eventually turn brown like his mother's, since that is how her hair started in life. Although she didn't have the old man hair that Eric currently has. His hair is really light blond on the top and darker on the sides. It looks a bit like he is balding, so still like his dad! (sorry Cris, but it had to be said)
As for Abigail, it looks like she is doing much better. Her mom is now able to do Kangaroo Care again. We hope she continues this progess and joins us in Third Pod soon.
Today, when we checked in, his Primary RN Jean, said that he is still doing well with the cannula. They also moved him into a crib. He has been doing really well with maintaining his temperature (all that chubbiness ). They mentioned it yesterday, but didn't want to make too many changes. They have scheduled the blood gas to make sure all is well with the cannula and if Eric's red blood cells are doing well.
It has been a great the last couple of days with all of the progress Eric has been making. It is such a joy to see how far he has come. Everyday is a blessing and Eric continues to show what a wonderful miracle that we have been graced with.

Wednesday, July 09, 2008
Eric is 2 months old! Current mood: tired
Eric had a good day on Monday, but Tuesday was not his best day. Eric has been gaining some weight and they have upped his feeds to 28 cc per 3 hrs. His CPAP pressure is down to 5 which is an improvement.
Tuesday, Eric had his eye exam and 2 vaccinations, with 2 more vaccinations scheduled for today. Eric was not happy with all the poking and prodding, so he spent most of the day surfing. When Joanna tried to hold him, he desatted so bad he turned blue and had to be bagged. Tuesday was definitely not one of his better days. Tuesday was another really, really long day.
Monday, we met Eric's future pediatrician and it seems like Cris' paranoia is not so overdone after all. Eric will definitely be immunized monthly for a common bug in the winter that is usually fatal to preemies. Eric will need to have exposure to people also minimized, how long is still uncertain, as it is up to Eric and how he progresses.
We continue to be grateful for what we have and hopefull that we will be able to bring Eric home at the end of August.

Monday, July 07, 2008
Milestone Day Current mood: ecstatic
Eric is officially getting better. Today he skipped the second pod completely and was moved to the third pod. Unfortunately, Cris forgot the battery to the camera, so no pics today. However, we will take pictures tomorrow and ya'll can just pretend it was from today.
Eric is still in his incubator and on CPAP, but everything else is going well. He still likes to mess with his breathing apparatuses and tried to kill himself again today. Thankfully, we were able to catch it in time. Actually, this time it was accidental. Eric is in the in-between stage with the CPAP prongs and mask. He is too big for the small and it crushes his poor nose. He is too small for the medium. One little jerk of his head, and the CPAP is off his nose. Eric did finally reach the 3 lb. mark but he lost some weight and is now a little under. He is getting so big and chubby. The nurses say that he is one of the cutest babies in NICU. While we are sure they say that to all of the parents, we know that they mean it with us.
Cris is still trying to get the hang of the whole daddy thing. Eric tends to sat at 45% oxygen with him while satting at 25% with Joanna. Poor Eric, Cris has such a death grip on him when he holds him. It is too cute. Cris reading this says that he doesn't have such a death grip anymore. (He's lying. Don't believe him.)
Tomorrow we are going to be talking to a pediatrician for when Eric comes home. The pediatrics building is right next to our regular doctor and Joanna's OB. The OB takes her own baby to them, so we are confident in their abilities.
We hope everyone had a great 4th of July weekend.

Saturday, July 05, 2008
Eric for Thursday and Friday Current mood: optimistic
Eric had good days on both Thursday and Friday. Eric is now up to 26 ccs every 3 hours for his feedings. Eric continues to be a healthy eater and is doing better on the CPAP. Eric is gaining weight and making progress every day. Hopefully in a couple of weeks, Eric will be able to start breastfeeding instead of having to be gavage fed for all of his meals.
Keeping Eric upright during and immediately after feedings has reduce his reflux quite a bit. Eric has also learned how to get rid of unwanted gas in his system. He can be quite a stinky boy, so he must take after his father in that.
His podmate also continues to improve, and we are all grateful for that. Thanks to all those who have prayed on her behalf! We continue to enjoy every minute we have with Eric and it seems that he grows cuter by the day.