Sunday, August 1, 2010

1 Month - 4 Pounds - And Bottle Feeding

I want to start by saying I'm sorry for the lack of updates. It seems that I either didn't save the last two or the internet ate them on me. So- here is the long update on my boys.

Kiernan is now 4+ pounds and Graydan is 3.14. They are both growing well and are now wearing their little outfits while at the hospital. They are adorable in their preemie clothing! They both are off the caffeine and have gotten rid of their sleep apnea.

They are eating about 2-3oz of formula at every feeding, but only bottle feeding once a day. They still have the feeding tubes as they haven't yet mastered the process of breathing, sucking and swallowing all at the same time. They are getting there though, and should be starting to go up on the number of bottle feedings shortly.

Graydan is on track for being put in a crib bed sometime in the next few days, with Kiernan a few days behind that. Kiernan had an episode of getting too hot and then couldn't regulate his temperature again after wards, which means he is a few days behind his brother.

They are both moving around a lot in their incubators- despite being bundled up in blankets. They almost have figured out rolling over by throwing their arms round, but not quite. I don't think they have enough mass quite yet, but when they do!

Both have great eyesight and are growing well according to the Drs. We can't wait to bring them home and start introducing them to everyone! The doctors have started asking about our pediatrician and whether or not we have car seats. I'm taking that as a good sign! Have to have all of that in order before they can come home!

Thursday, July 15, 2010

3 Weeks Old Today


(Top photo is Kiernan. Bottom photo is Graydan. )

Today my boys are 3 weeks old. I'm so proud to have them in my life, despite the stress of having them early. They are already showing so much personality! They have grown more than a pound each and are tolerating all their feedings very well.

Yesterday Kiernan came off the cannulas completely and now only needs the nasal cannula every now and then. This might not be a permanent thing yet, but he's getting there!

Graydan is quickly working his way to having his PIC line removed, as he has been doing very well with his sugar digestion and the TPN (the bag of yellow fluid that is supplemental to their actual feedings).

Gray is a tad behind still on the cannulas, but gaining ground. Kiernan is likewise a tiny bit behind his brother in getting off the PIC line. But both are doing great and doing everything in their own time.

As they come off more machines, they show more personality. Gray hates to face away from people, and will turn his head and cry when people are talking and he can't see them. He was always moving around and kicking when he could hear music or something. Kier is much quieter, but longer. His arms are so long he can tap on the plastic of the incubator. It is a very strange sound, like a "poink poink poink" sound. He likes to do it when the second shift nurses are trying to work on Gray.

They are both so cute and getting so big! Happy 3 weeks babies!

Wednesday, July 14, 2010

A Few New Developments

I realize I haven't updated this lately, and I apologize. Things got crazy for Mathew and I on top of all the worrying about the boys. But things are back on track and here is your update!

Both boys are up to 12 cc's of formula every 3 hours and loving it. They are being fed through the feeding tubes for now, but will be off of them in about 2 weeks. The boys love food (proving they are our children) and are tolerating the increase of 1cc twice a day very well. Sometimes premies' stomachs can't handle the rate of increase and they start having back flow and GI problems, but Kier and Gray are doing great!

Since they are getting nutrients through the formula, they have decreased the fluids being administered through the IV/ PIC lines. Once the IV/PIC lines are down to 1ml per hour (they are currently at 3.4 and 3.6) they will be removed. So the boys are slowly but surely coming off their machines!

Kiernan is now off the heated flow cannula, and only on a nasal cannula. This means that the giant machine that was providing pressure has been removed, and he has traded the slightly larger tubes for smaller ones. A nasal cannula is the same thing people on oxygen wear, it's just it's technical name. He will be on that for about 3 days, just to help him out a bit. If he continues as he has been, that will also be removed. Kiernan is now up to 3.2lbs and growing well.

Graydan is slightly behind his brother in weight and coming off the heated flow cannula. Gray is currently 3lbs even and still needing a little help from the cannula (which provides pressure). They estimate that he'll be on it for at least another few days, then will be switched down to the nasal cannula. According to Dr. Flores, this delay is due to Graydan not having surfactant in one lung. This caused him to have to spend energy and so forth creating it and readjusting to using both lungs. They are not at all worried about it.

Both are more active and able to be held at least once a day. Things are getting easier for them every day. Thank you for your continued good thoughts! They are definitely working! I shall have more photos for you all soon!

Friday, July 9, 2010

The Last Few Days

The last few days have been full of ups and downs for the boys. They are now up to eating 3mls every three hours and tolerating it well. Kiernan is up to 2.13, and Graydan is 2.11. They are both filling out and show signs of becoming the chubby little babies they will become.

Graydan has been having a lot of alarms lately, which they think might be a reaction between his increased weight and the caffeine. Since he hasn't been on the caffeine as long as Kiernan, they think his weight gain might be affecting how the caffeine works in his system. They have adjusted him up today, and hope to see good results tomorrow and the next day.

Kiernan has evened out on his alarms, and normally pulls himself back, which they call "self recovering". Premie's of their age still have alarms frequently, but the next few days should see both of them self recover all the time. Kiernan's current problem is with the pacifier. Anytime he has it in his mouth he alarms and stops breathing. He really likes it and has lost pacifier privileges a few times.

Both of them were put back on the blue UV lights today, as their bilirubin counts were up again. Hopefully, they will come back off the lights tomorrow. They have also been raised up on the canula line (I apologize for my constantly spelling that word wrong in previous posts. Cannela should be spelled canula.) to 3 and 4L, instead of the 2 or none that they were.

They are right on track for learning all of their "get out of hospital" tricks- like breathing all the time, eating, and regulating their body heat. The nurses continue to be wonderful and supportive.

Monday, July 5, 2010

Next to Each Other :)

Today was a great day for Kiernan and Graydan. They are now sharing the little cubical thing over near the windows (which is where Kiernan has been the whole time, but Graydan was over by the entrance). They can see each other now and it's much nicer for Mathew and I, as opposed to running back and forth across the room to see each baby.

Kiernan is back on the Cannela after a few bad apnea episodes, but is only on the lowest setting rather than needing extra support. He is basically just receiving the pressure without extra air mixed in. So not a bad thing, just showing that he needed it a bit longer. They will take him off of it again in another few days and see if he is more able to fight the apnea himself. Kiernan is also looking much bigger and weighs in at 2.10!

Graydan is doing so much better after the blood transfusion. His color is better and he's much more active than he was the last few days. It was a very successful process that immediately helped with his digestion and moderating his sugar levels. He is back up at 25% O2 mixture, which is basically just compensating for the extra fluid from the transfusion. They believe he will be back down to the "room air"- 21% O2 ratio tomorrow. He is also gaining weight well, and weighs slightly more than Kiernan. He is currently 2.10.6.

Both were happy and smiling when we visited. It is nice to see them in good moods. :)

Sunday, July 4, 2010

2.8 lbs Each and A Blood Transfusion

Today was filled with mixed news... On the one hand- both boys are at 2.8lbs each and are taking well to the milk. They are working on growing and slowly becoming independent. Kiernan is holding firm on not needing the cannela line and Graydan is not showing any signs of illness.

Their was however a nasty scare with Kiernan and a bought of apnea. He fell asleep and stopped breathing. Unlike some of the other apnea episodes, he was unable to pull himself out of it without the nurses and I intervening. This is typical in babies his age, and he truly has been doing great with pulling himself out of it, but it's still terrifying to watch. He is fine now though and only has one apnea of this severity level every couple of days they said.

The CBC they took of Graydan hasn't shown any sign of illness, but we will know tomorrow if it was truly negative or not. They take 48 hours of observation just to be sure that it's not some kind of slow forming bacteria, etc. He does however require a blood transfusion. Premature babies loose red blood cells faster than they can be created at this stage. Given all the tests he has needed to check his sugar digestion, he has lost more than he should have at this point. His count this morning was only 8, which is about 7 lower than Kiernan's and where he should be.

Right now the blood transfusion is a preemptive move on the Dr's part, but given that he has a few more tests coming up and that premie's loose red blood cells anyway- this will ensure he doesn't become very anemic. The transfusion is safer for babies than for adults, which reduces all the risks associated with blood transfusions down to a 0.01% chance. They are hopeful that this will help him be able to come off the cannela line and become more self sufficient.

They are doing OK, but today was a bit of a set back in terms of working towards holding them everyday and starting the Kangaroo Care. The next few days will be a little rough on Graydan as he goes through the blood transfusion and then all the subsequent tests that will show if it has worked or not.

Thank you all for your continued well wishes and prayers/ positive thoughts.

Kiernan comes off the Cannela

Yesterday's big news was Kiernan came off the cannela machine. This machine was providing puffs of air to remind him to breathe and forces him to take big enough breaths to fill his lungs each time. They took him off of it yesterday to see if he could do it on his own and he was successfully able to breathe and did not have any alarms.

So he is much happier without the breathing tubes on his face- which he kept trying to remove anyway. He is still under the blue UV lights as his bilirubin counts have been erratic since he has started to ingest milk.

Both Kiernan and Graydan are getting 1 cc of milk, and tolerating it really well! They both look forward to actual meal time and should be moving to more in a few days!

We are still waiting to hear back on Graydan's cultures to see if he does have a bit of a cold or if he's just learning to cough. Every now and then he has fits of coughing, and the nurses were thinking a slight cold could explain why he was slower to eat the first day. Once we get the results back on the cultures, they think a lot of his alarms will stop once the antibiotics start working.

They were both happy and resting when we were there. Each only had 1 alarm each, so a massive improvement from the night before when they had about 3 each while we were there. Every day is getting better and easier for them. They are still slightly ahead of the growing curve with being able and ready to get milk and come off any of the machines. Most premies at their age are on all the machines for another few days at least, so coming off the blue UV lights and the Cannela line is a great step forward! Keep it up cuties!

Friday, July 2, 2010

Friday's Visit

Today's visit went very well.

Graydan is doing very well, and has gained more weight! He is now officially bigger than when he was born- 2.79! Keep growing little guy! He had a bunch of alarms again today, so they have started giving him caffeine to try and stimulate him to remember to keep breathing.

Kiernan lost a little over night, but he has had a lot of alarms which does effect weight gain. He is still on the caffeine which can affect it as well. He should be evening out and gaining more shortly! Kiernan is also back on the blue UV lights today, he had a bit of a rough night last night and his levels this morning were slightly off. By providing this therapy now- we are cutting off all chances of jaundice later.

I found out more about the heart murmurs today, which was all great news! Kiernan's PD artery has completely closed- which is slightly ahead of the curve. Normally, the PD closes around week 2-3 in premies as young/little as they were. So he is about 5 days ahead of that curve.

Graydan's is still audible but it's very faint now. They heard it yesterday, but not today. This could mean a) it's completely gone or b) so faint that they simply didn't catch it. Likely, he still has a partial, but this is great news! He is now officially completely out of the range where surgery is an option! Neither of the boys will need surgery!

Still did not get to hold them today. Have to have a good day alarm wise. There is always tomorrow. :)

One Week Old!



July 1st was their one week birthday :) What a difference a week can make! Above are some photos from yesterday. The top is Kiernan and the bottom image is Graydan. So sweet!

They are already looking so much bigger and healthier than when they were born. Their color is so much better and they only have to do small amounts of time on the blue UV lights now. They had lots of alarms yesterday, though. Alarms are the beeping that happens when either their heartrate, O2 levels, or breathing drops below a certain level. It happens requently happens in premature babies. All it means is that the boys get comfortable and momentarily forget to keep breathing. They are slowly getting rid of this apnea, day by day. :)

Yesterday they were giving their first cc's of real food. They were given 1 cc each of milk yesterday and they loved it! They will continue to get 1cc every 2 hours for the next 3 days approximately. They will up the quantity if either boy shows signs of being more hungry and their tiny belly's can handle it. So far, the milk has helped Graydan to break down more of the sugars easier. And since he had a problem with it to start with, this is great news!!

We weren't able to hold them due to the number of the alarms they had. But today is another day!

Wednesday, June 30, 2010

June 30th Visit

Tonight I got to hold Kiernan. Mathew had gotten some glue on his hands at work that refused to come off, so he just talked to him and took some photos. Kiernan loved being held and spent most of the time sucking his thumb and looking around.

The nurses told us that Kiernan was up to almost 2.5lbs, and that Graydan had started gaining weight as well and was now 2.49. Both boys lost a bit of weight and are now making headway towards gaining! They both spent some time under the UV lights again today, as their bilirubin counts were higher again this morning.

Both boys are stable and making good progress. Tomorrow I will be able to talk to them about the Kangaroo Care program and find out more information on what that is. I will post a description of what that program is once I find out myself.

A Great day!

The last couple of days have been very exciting for the little guys. On Sunday night, Graydan was giving his PIC line. A PIC line is a permanent IV that will allow them to both inject nutrition (the TPN) as well as medicine, and also to take blood when needed. It took them almost 2 hours to complete the procedure as it requires x-rays to be taken periodically. The PIC line went in easily and Graydan was very happy to have his hands free. As of today, Kiernan has had his PIC line put in as well.

Yesterday, we were able to hold Graydan for the first time. It was great. He opened his eyes for a bit and smiled at us both. While Mathew was holding him he got hiccups, which scared Mathew a little as he's so small.

Kiernan has gained .4 oz, and is about to have his sugars mixture readjusted to help him continue to gain weight. He continues to have no problems with digestion, though he still has an apnea. The apnea is less prevalent now, only happening 1-2 times in 12 hours. This shows the caffeine regiment is working well for him. They suspect he'll be able to come off of it in a few days.

Graydan is done with his indomethasin course and the murmur is all but gone. It will continue to decrease in size as he grows but it's no longer a danger to him. His sugars and digestion has evened out so he is going to start catching up to Kiernan on the nutrients. He hasn't gained anything as of our visit yesterday, but his lungs and heart are good to go and he should in the next day or so.

Both boys are doing great and becoming more active as they get taken off more and more machines. Soon we will be able to hold them a little each day and eventually start a program called Kangaroo Care. Thank you all for your well wishes and happy thoughts. It means a lot to us all that they are so loved even before meeting people.

Monday, June 28, 2010

Kiernan & Graydan are born!

Thursday morning, at 5:11 and 5:13, Kiernan Duke Kelly and Graydan Ramsey Kelly were born. I (Julia) had a rough pregnancy, but the babies were looking good and healthy at all stages.

Though they arrived at 29 weeks, there was no reason found as to why they came so early. I had not gained enough weight but that wasn't slowing down their progress any and they weren't in any sort of distress according to the monitors. But despite this- they arrived 11 weeks early. The road ahead would be long...

They were immediately taken and put on a bunch of machines to help them breath and monitor their progress. The breathing tubes were put in and provide a puff of air every time they breath to make sure their lungs fill with it each time. The air mixture is a high concentration of oxygen, rather than the 21% oxygen mixture we breathe- which the staff call "room air".

Day one we were told that they had the probability of needing to have umbilical cord IV's or permanent IV's rather than the regular iv, blue UV lighting for jaundice, ventilators, and possible treatment for heart murmurs.

Day 2- both babies are doing well though their oxygen levels are all over the place and will need watching. Graydan was having a problem with his sugar digestion and they began looking into what caused it. The answer was a difficult and erratic breathing pattern, so a ventilator was needed.

Kiernan did not like his IVs and tried to take them out a few times. He also has an erratic breathing pattern, but it manifests as apnea which is corrected by caffeine treatments.

Day 3- Graydan gets put on a ventilator for a while, as they try to get his sugars under control. He reacts well to the ventilator and is able to adjust down to "Room air". It's discovered that one of his lungs is under developed and does not have a substance called surfactant. Surfactant is a fluid that coats the lungs and keeps them open. He is given a corrective medicine which prompts his body to make more of the substance. Once his breathing is under control, the doctors found a murmur in his heart and did a chest ultrasound. It's found that his PD artery is still very big and they suggest a medicine called indomethasin to correct it. They do a brain ultrasound to make sure there are no brain bleeds- as indomethasin would make those worse. The ultrasound comes up clear and they begin this course of medicine.

Kiernan had a few more episodes of apnea, but the nurses are not worried. He is reacting well to the caffeine and his sugars are still good. He is up to 5.2ml an hour of his TPN- which is a bright yellow liquid nurishment given via iv. He is still under treatment for jaundice.

Day 4- Graydan is taken off the ventilators and doing well. He and his brother are breathing mostly "room air" and only bouncing up to about 25% when distressed. They are both on blue lights, but their bilirubin count is such that they will soon be off the UV lights for at least a while. Graydan is at 4.5 ml an hour on his TPN, and Kiernan is at 5.7ml as both are doing well with their sugars. The doctors find a heart murmur in Kiernan as well and they begin to run all the tests that Graydan already had.

Day 5- Kiernan and Graydan are doing well and are resting when I came to visit. Both are sleeping on their bellies and off their blue UV light treatments. Their bilirubin levels have corrected themselves enough that they will be off the UV lights for the foreseeable future. Graydan is up to 5.2 ml of the TPN and Kiernan is up to 5.8ml an hour. The caffeine is working as is the indomethasin. Both are well on their way and were looking much more comfortable today.