Heart meeting today

Well, our little Connor is up to 3lb 5.4 oz and Logan is up to 3lb 2 oz. Connor is now eating 2 bottles a day. He absolutely loves wearing clothes too.
Today we met with Dr Ghazali, the pediatric cardiologist, who was a wonderful man. He took the time to draw a fabulous diagram of the issues we face with Logan's heart. Basically, he felt there was a 99% chance that his ASD will close on its own. He also felt that as the heart grows as he grows the VSD's will also close on their own. Since there are 4 holes that are about 2mm in diameter and there is a lot of shunting going on, the least invasive fix would be to surgically close his PDA. He will have yet another echocardiogram on Thursday and if the PDA is still open then he will likely have surgery to close it next week. He felt the cardiac arrythmias were being caused by electrolyte imbalances from the bulk of diuretics he is on. He is on the maximum doses of LASIX and ALDACTONE for him right now to keep the fluid off his heart. Because of the Lasix he is recieving sodium and potassium supplements. Despite all of this, he is a happy baby none the less. In the top picture he has a death-grip on his pacifier.
For Connor, not only does he get to eat 2 bottles a day, he gets a whole ounce now and his oxygen flow was decreased to 1 liter and he is 2% above room air.

one step forward, two steps backward..

One step forward....Connor finished his bottle again today. He continues to do well and loves being dressed in clothes!
Two steps backward....Logan continues with the irregular beats. He scared his favorite nurse today when his heart rate looked like two beats then a flat line and then two more beats and another flat line. She said it went like this for several beats and went normal. He has continued to throw in a lot of irregular and erratic beats also having heartrate drops and desats to the 50%'s. Thank goodness tomorrow is the meeting with Dr Ghazali, the cardiologist! We just dont know what is causing this change and it is very frustrating to not know.

Connor finishes a bottle!!!!

Connor managed to finish his bottle today taking in all 27 cc by mouth! WOO HOO big boy! He is quite at home in his clothing. Today he was sporting some new duds from Grandma's friend Pam, who came to visit from New York. Even though the preemie clothes are a little big for him, it will seem like no time before he is filling them out completely. And we couldn't let Logan feel left out. Since he cannot wear clothes right now, I took in some fashionable socks for him to wear from Aunt Alexandra in New Jersey. Even though they look so tiny, they come 1/2 way up his legs!
Logan had quite a few episodes of arrythmias this morning, and went into a pattern of bigeminy where he was having the PVC's (Premature ventricular contractions) back to back and setting off the alarms. He seemed to regulate himself this late afternoon and evening;however after a breathing treatment he exhibited a few PVC's. Perhaps this is what is causing them. We will have to sit and watch. He has managed to throw in a few PAC's as well.
Thank you all for the continued prayers for our boys. Without family and friend support we would be lost.

Today we did new things

Today Connor took all but 4 ml of his bottle. He is really eating like a big boy. Soon he will be slurping down all of his feeds. He also got to do something new...wear clothing! Here he is showing off his first outfit and his extra thumb. He will lose the extra thumb before he comes home, but for now it is a great way to tell them apart. Look at that little muffin!!
Logan has lost his CPAP head gear and traded in for a slimmer model. He is now on nasal cannula. Hopefully this will be a permanent change and we wont have to go back on the CPAP.
He is working a bit hard on the cannula, but his blood gases look good and he seems to be compensating well. He has continued to have the arrythmias (PVC's). He had an EKG today and more bloodwork. The cardiologist is aware, but not overly concerned at this point. He is being monitored closely.
I was able to hold Logan tonight for quite a while. He was so peaceful sleeping in amy arms. He is up over 3 lbs again, which is a relief.

P.S.

We are five weeks today 2/24/06!!

Today I worked with Connor on the bottle again. He took another 15cc by mouth, but then got tired. He exhibited a good rooting reflex and latched on the bottle right away. He had a desaturation while feeding and his color turned dusky, but he recovered himself without problems. The rest of his feed we put down his NG tube.
Logan has taken a couple steps backward. He had a very funky episode of cardiac arrythmia and scared the nurses. I am glad I wasn't there to panic. He has also lost weight the last 2 days and is down 120 grams to 2lb 13oz. We aren't sure if he is working too hard to breath and is burning too many calories or if it is the diuretic or the scale is faulty. He had his feeds increased yesterday, but lost weight. He is continually requiring 30% oxygen and if they try him at 29% he instantly desats. They talked about a trial at the nasal cannula again tomorrow, but i am afraid for him that it will be too much. I am meeting with the cardiologist Dr Ghazali on Tuesday and that feels like light years away. I have a lot of questions to ask him about the boys conditions.
Again I feel so guilty they have these heart problems and wonder if they had been able to last inside longer, if they would have the same problems. I will never know.

3 pound equals....

Yippee!! Logan andConnor had the exact same weights! They both weigh 3lb 1.3 oz!! I am so excited for them. What a milestone to finally be gaining so well. Logan has almost gained a full pound!
I was able to give Connor another bottle today. He is allowed one per day. The nurse removed his tube and put a new one up his nose so he could get a better seal. VOILA, He did great. He took in 15 cc and had his suck, swallow, breath rhythm down well. I had tears in my eyes watchnig my Connor eat like a big boy! He got tired, so we gave he rest down the tube. Dr has upped the boys to 27cc every 3 hours now. They are doing so well. While feeding Connor, he maintained his sats, heartrate and respirations. The nurse said this was more important that the amount as it shows he is maturing and being able to handle himself.
Logan had a chest X ray and KUB (kidneys ureters bladder) to look at his lower abdomen. He still has hazy lungs (pulmonary congestion) and his heart is still enlarged. The Dr increased the diuretic Lasix to help with that and see if we can get him on the nasal cannula. Keep your fingers crossed! His belly looked good. There was some concern because it is distended a little, but it is CPAP related and he is full of air!! He is doing so well otherwise!

I will have more pictures tonight.

I went this evening to hold Logan. I swear he smiled for me. I am sure it is wishful thinking, but if I just had my camera. I am sure it was just gas, but he had an ear to ear "mouth stretch". I just love my boys so much!

Daddy holds Connor

Today John held Connor for the first time. He even got to give Connor a try at the bottle. Connor realized that it was a lot of work to do the bottle, but he tried. He ended up spitting out just about all he took in. He made sure Daddy had a true experience today, so he filled his diaper just for daddy! We had a good laugh at that and Mommy made sure he got cleaned up after his feed.
We asked the neonatal Dr about the PDA in Logan's heart and about giving him indocin to close it up. She told us it was only effective in the first 2 weeks. His PDA is small, but still open. She told us the only fix now is surgery. As to whether or not that happens is up to the cardiologist. I don't understand not fixing that hole when there are many others. I understand that they wanted to see if it would close on its own, but now we have to look at surgery to close it. GRRRRR. He continues on the CPAP with 30% oxygen and often he drifts his Sats into the 80%'s. We are trying to remain optimistic and realize that if it were very serious they would be jumping all over him. Right now his treatment is diuretics. I think if surgery were needed, we would have him transferred to Riley hospital in Indianapolis. It makes us sad to know he has these heart troubles. Connor doesn't seem so phased by his 2 little holes. He continues to make great strides.

heart update for Logan

Dr Ghazali read Logan's echo tonight and he is going to come in to assess him and his extremely loud murmur. He is starting to become symptomatic related to everything. None of the holes have closed. He continues to require >30% of oxygen and he desats as well as has the enlarged heart. He is still on CPAP after a failed attempt to get him on the cannula. We will have to see what the cardiologist says, but surgery may be an option.
On a positive note, Logan is up to 2lb 14.9 oz!!! I didn't get Connor's weight as of yet, but will have it tomorrow. I held Logan tonight while they changed his bed and got to hold his gavage feed. Connor was snuggled in his bed for the night, so I din't want to disturb him. He looked so peaceful.
Will post new pix soon!

Todays news

Logan is up to 2lb 13.5 oz. He is on a marathon run to get to 3lb like his brother. Connor lost a smidge, but we are going to ignore it cuz he is a 3 pounder! Tomorrow, Connor is expected to begin bottle feeds a little at a time! I am so excited for him! His breathing treatments have been discontinued as well. Logan had the repeat echo today, but DRGhazali is out of the office, so it will be read tomorrow. His breathing treatments have been knocked down to every 8 hours. I held Connor this morning, held his gavage feed and changed his diaper. (note: when they are home, I wont be bragging about these little things-hee hee) He and I locked gazes for an hour. He has beautiful dark blue eyes (Trevor had the same and then they turned brown). I will post more tonight! Thank you for continuing to check back on their progress!!!!

Pix of my big guys. I didn't recognize Connor. On his tummy he looks so big and filled out!

Connor Logan

They just keep growing and growing and growing....

Logan is up to 2lb 12.9 oz and Connor is now a 3 pounder coming in at 3lb .5 oz!!! I am so proud. Today they are a month old officially! They both had repeat ultrasounds of their heads, which were normal. Tomorrow, Logan will have a repeat echocardiogram to look at the multiple holes in his heart. Connor has been switched over to bolus feeds instead of continuous. He and Logan are on the same amounts- 25cc every 3 hours. Next we venture to the bottle......

Identical or not? You be the judge.

Connor
Logan

I look at my guys and cna't seem to make up my mind. Since we know in the first division of zygosity, identical twins will have two placentas and two amniotic sacs. This mimics the setup for fraternal twins as well. My guys each had their own sac and placenta. I guess we wont know until we have the zygosity testing done, but these pictures make me think...identical, or not????

Logan gets a trial on the cannula...

Well, I went ot IKEA today to get the boys nursery bedding. I called for an update and the boys are doing well. Logan was off the CPAP for about 5 hours today. He had to go back on as he was working a bit to hard to stay well oxygenated. It was a good try, big guy!!!! Logan is up to 2lb 11.7oz and Connor is up to 2lb 14.9oz! Soon enought they will reach 3 lbs! I will post more pictures tomorrow!

Love to all!

4 weeks old today!

The boys are 4 weeks old today (official 1 month birthday is on Monday the 20th). I can't believe 4 weeks has gone by so quickly! It seems like only yesterday I had them. Soon we will be in March and can start to look forward to them coming home. There is still much to do with getting the nursery ready and laundry washed.

Connor loses his CPAP!

Connor decided this morning that enough was enough, so he yanked out his feeding tube (which he had to have put back in). On a good note, he got his CPAP taken out and was placed on the nasal cannula only. It is so nice to see his whole face and head for once. He had some minor desaturations when it was first put on, but he figured out how to regulate his breathing and has done just fine since! Logan continues to "chill out" in the incubator. In this picture he had a full tummy and was in a nice deep sleep. He has had his feedings increased again to 25ml every 3 hours. Hopefully we will start to see some real weight gain soon! I am so proud of my boys and all they are accomplishing. They have been little fighters, despite a rocky start. Good Job Stinkers!!!!!

Official big brother

Trevor is an official big brother now. He completed his big brother class at the hospital and has earned his certificate! We are so proud of him!!!!!

Eating, sleeping, pooping......

Connor with his valentine's socks on....
Logan with his valentine's socks on....

Here are the pictures of my sweeties with their mommy-made socks on. They continue to do well and the Dr made no changes today. We are guessing no changes are good and that right now the boys just need to gain weight and mature their lungs more. They are doing so good and I am proud of them. I hope tomorrow to have some quality time with them.

On a sad note...

I have two friends from my twins forum who have also had thier babies early. They both went after me, but were only 26 weeks along. Trish gave birth to two wonderful girls and Sarah gave birth to a beautiful girl and little boy. Sadly, on Feb 6th, Sarah's little girl Alissa passed away. On Feb. 9th Trish's little girl Sophia passed away. Both these babies were micro preemies with Alissa weighing in at 0.8 of a pound and Sophia weighing 1lb 11 oz. They were strong little fighters. Thier siblings continue thier stays in the NICU. Alissa's brother Landon continues to make good progress and Sophi's sister Ava still fights for her life in critical condition.

I also have another wonderful friend, Alexandra, who lost her two girls Jada and Jaelynn at 22 weeks. She has been such a pillar of strength to me, throughout my pregnancy and when I was in the hospital. She called me daily and we continue to keep in touch everyday. She does all of this as well as dealing with her own loss.

As I think of how well my boys are doing, I cant help but have heartache for these wonderful ladies and forever mommies of twins. Please, as you continue to pray for my boys, keep these mommies in your thoughts, and pray thier hearts heal from thier losses. Thank you.

Valentines Day

Well, this am my Valentines treat was to hold litle Logan for an hour. He is now residing in a new bed just like Connor's. I shopped yesterday for anything preemie for Valentines day, but couldn't find anything, so I made some little socks for thier tootsies. I will post pictures later tonight when Daddy gets to hold one of the babies for the first time.

Logan reaches out to big brother...

Trevor holding Logan's hand at last!

The highlight of Trevor's day was getting to hold his brother Logan's hand. He is such a good big brother and loves his babies so much. Logan had his umbilical line d/c'd today, so now he also has a cute little belly button. He is up to 21cc feeds every 3 hours. His IV nutrition was finished on Friday, so like Connor he is solely on breastmilk with fortifier for added calories. They just keep growing! I am so proud of thier little successes. Tonight the boys also had visits from Aunt Diana and cousins Jordan and Alanna.

Playing catch-up

Logan has caught his brother in the weight department. Connor lost an ounce and a half (after a couple of poops) and Logan gained, so both are now at 2lb 11oz. Connor still looks longer and bigger, but we can't argue with the scale!

Logan on his CPAP

Logan is continuing to do well on his CPAP. He did have a couple of fits today crying and carrying on, so he dropped his oxygen levels. Once comforted, he gets it back up. I now have heard both have a good cry, something I hadn't heard since they were born. Tonight I was able to change Logans diaper and do his gavage feed. I was also allowed to check his vital signs. This big boy is up to 17cc feeds every 3 hours and will go up to 19 tomorrow. He is doing so well with them and is gaining quickly. I will be surprised if they both are NOT at 3lbs by the end of the week!
Na Na Na boo boo... I am a big boy too!
Logan on his CPAP!

Logan is catching up.....

I just got report that Logan has been extubated and has now joined his brother on CPAP! His nurse said he has been on less oxygen since the switch and is breathing very well on his own! Yeah big boy!!!!

Yes we are big boys....

Connor is up to 2lb 13.1 oz and Logan is up to 2lb 10.6 oz. The boys are getting bigger and after 3 weeks I am starting to see a little fat accumulate on thier bottoms and thighs. Connor's stools are now negative for any blood, so it looks like it was just a little ulcer that may have been caused by his feeding tube. Logan is still "riding the vent" so he needs to just get a little bit bigger so he can get on the CPAP. We will see on Monday what the Dr says about his heart and see what the plan is to get this boy better!

Thnaks again for all of the prayers and good thoughts! You are all a bunch of miracle workers and we are blessed to have so many great family and friends! We Love You!!!!

Three weeks old

Connor's new bed: Peace and quiet at last...
Daddy's wedding ring on Logan's foot! How's that for scale?

The boys are now 3 weeks old. Connor has his new bed and is doing quite well. Logan is being a bit difficult. He is having a lot of desaturation. The Dr turned his vent down, but Logan sometimes relies on it to "take up the slack" and then he sets off all sorts of alarms. When I am there, I about have a heart attack! Also, his heart is quite enlarged due to the VSD (ventricular septal defects-3 holes). We are still hoping these holes will close on thier own, but Dr said we might be bringing a cardiologist on board. He is recieving Lasix to help pull off some of the extra congestion in his heart and lungs. They were talking about taking out his breathing tube soon, but after the last couple of days, I think he will need to grow a bit more. All in all they are positively adorable. I was able to hold Connor again this evening and rock him. He also made sure I got to hear his crying voice too. Keep up the prayers as they are doing good things!!!

Connor has a brand new bed!

Today Connor was upgraded to a new incubator bed. This "step up" bed allows him to have a quieter environment to grow and develop. He had a couple of stools that were positive for blood, but we were assured this is normal for preemies and we will continue to watch for signs of NEC (necrotizing enterocolitis) which is a common, but serious, complication in preemies. I was able to do a gavage feed on Logan today. Little by little I get to do a bit more to participate in the boys care. Logan also had his vent rate dropped to 15 breaths. He still has some periods of desaturation. Hopefully tomorrow will have some new pix to post.

Holding our own

Logan freshly bathed

Connor on his CPAP

This evening I was able to hold Connor again for an hour and a half. I rocked him in the glider. He had the hiccups and was making all sorts of little squeaking noises. He was doing well still on the CPAP. Logan had some periods of desaturation where his oxygen had to be turned up. The Dr feels this could be a complication of his PDA (patent ductus arteriosis) or heart holes (atrial and ventricular septal defects). Time will tell. WE will continue to pray the PDA closes on its own. Logans weight is up to 2lb 9.7 oz and Connors weight is up to 2lb 12 oz. They are growing big everyday!

Doing well

Connor is holding his own n the CPAP and is having to work a little bit harder on his breathing, but the Dr assures us this is normal and to be expected. He has a few retractions everynow and then. He opened his eyes up when we got there this morning. He continues to tolerate his feeds and now they have been increased, the Dr says growth is they key right now.
Logan is doing well on his feeds too. They also have increased too. I hope I can keep up with their needs!!!! He too needs to grow. His color is still great since recieving his last blood transfusion. Both boys are still being treated for a mild pneumonia, but they are resolving.
Will post later tonight after my evening visit with them.

Proud Big Brother

Here is the proud big brother, Trevor, looking over his little Connor. He loves to talk to them and say "hey little guy". He is handling his brother's being in the NICU very well and asks to see them often. He is such a big helper!!

2-7-06 Holding my guys

Holding Logan
Holding Connor

Today was a special day. I got to hold both of my guys. I held Logan this morning and Connor later this evening. Connor was extubated today and was placed back on CPAP. Hopefully he will do better this time around! So far he has lasted longer than the last attempt! I am so proud of their achievements.