I had a nice visit with the babies today and was able to hold both of them.

Charlton: He is now starting to gain some weight and weighed in tonight at
2lbs. 5.8 ounces. They have also increased his feedings to 7.5 mls continuously.

Savannah: She weighed in at 2lbs 11 1/2 ounces today.

Everything else is status quo.

Chuck, Ashley and I spent the day at the hospital and also had some fun at the local park.

I had a great visit with little Charlton and was able to hold him for a little over an hour.

Tonight they will get weighed, bathed and get an Isolette (Home) makeover.

Unfortunately neither Chuck or I could hold Savannah today because she was misbehaving with her saturations.

Chuck had a very nice visit with the babies today. He got to hold his little girl for the first time and held Charlton for about an hour.

Little Charlton decided to leave dad with a little present before going back into his isolette (let's just say it messy).

Charlton is starting to gain some weight and is currently up to
2lbs. 4 ounces. They have increased his feedings to 7 ml continuously.
He is also doing very well with the Nasal Canula.

Savannah is still doing well with her weight gain and is now at 2lbs. 10.4 ounces.

Both babies are neck in neck for length, just shy of 14 inches.

The doctors decided to try Savannah on the Nasal Canula at 9:15 pm tonight, but after speaking with the nurse at 11:00 pm she informed me that they will be putting her back on C.P.A.P with in the hour.

I am currently at the hospital with the babies and just spent the last hour hold Savannah. She did extremely well with me holding her. I told her that she has to be really good in order for them to let me hold her and so far she is behaving.

She is 2lbs. 10 ounces

Charlton: The doctors just made their rounds and told me that they want to remove the C.P.A.P and upgrade him to Nasal Canula. This is a hugh step for Charlton because he will not be getting any assistance with breathing just some oxygen. We are amazed at his progress and hope he does well with the Nasal Canula.

He is still not gaining much weight so they are going to increase his MCT oil to 8x a day. Hopefully this will help him to put on some weight.

I finally got to hold Savannah today and it was wonderful. We weren't sure how she was going to do with her saturations, but during the hour that I held her she was perfect. What a great feeling to finally hold both babies. Unfortunately Chuck was not able to hold Savannah because the nurse didn't want to stress her out too much. However, he did get to hold Charlton for a bit. Charlton's saturations dropped so Chuck had to put him back in the Isolette sooner that he would have liked.

Charlton: He now was 2 lbs. 1 1/2 ounces. He was starting to gain, but then we found out he did lose 20 grams last night. He definitely has Chuck's metabolism.

Savannah: She has more of her mommy's metabolism and has no problems gaining weight. She now weighs 2 lbs. 8 ounces. Before we know it she will be hitting her 3 lb. milestone.

Chuck and I visited with the babies this morning before heading out to the Yankees game with Ashley. The babies seemed to have a good day and so did we....the Yankees won.

Charlton: He is now at 2 lbs. 1 ounce and tolerating his new feeding schedule.

Savannah: She is now 2 lbs. 7 ounces. The doctors decided to move her back to C.P.A.P today without the NIV. So far she seems to be tolerating the change.

I had a very nice visit with the babies today. I was able to hold Charlton for about 45 minutes. He seemed ok with it, but did cry a little bit a first. I on the other hand really enjoyed my time with him.

They have changed his feedings today because he is not gaining the weight that he needs to. The doctor is keeping him on milk, but will now be alternating his feedings with formula.

Savannah: She is doing a little better with the NIV C.P.A.P., but is still having significant desaturations. However, they are not as frequent and she has not required any bagging today. They also changed her feedings to be 7 mls. continuously, rather than over the 3 hour period. They are hoping this will help with the Apnea.

She is now off the antibiotics that she has been on for the last 6 weeks.

Her head ultrasound did not show any water on the brain, which is a very good thing.

Overall I am amazed by their progress to date and how they are filling out.

Tomorrow we will be stopping by the hospital in the morning for a quick visit and then heading off to a Yankees game, complimentary from Great Aunt Sue. We are looking forward to getting out and having some fun. Ashley is especially excited about the game because she is always watching the Yankees with Grandma Krause on TV. This will be her first live game.

Hope everyone has a great Memorial Day Weekend.

I had a very nice visit with the babies today. I was able to hold Charlton for about 45 minutes. He seemed ok with it, but did cry a little bit a first. I on the other hand really enjoyed my time with him.

They have changed his feedings today because he is not gaining the weight that he needs to. The doctor is keeping him on milk, but will now be alternating his feedings with formula.

Savannah: She is doing a little better with the NIV C.P.A.P., but is still having significant desaturations. However, they are not as frequent and she has not required any bagging today. They also changed her feedings to be 7 mls. continuously, rather than over the 3 hour period. They are hoping this will help with the Apnea.

She is now off the antibiotics that she has been on for the last 6 weeks.

Her head ultrasound did not show any water on the brain, which is a very good thing.

Overall I am amazed by their progress to date and how they are filling out.

Tomorrow we will be stopping by the hospital in the morning for a quick visit and then heading off to a Yankees game, complimentary from Great Aunt Sue. We are looking forward to getting out and having some fun. Ashley is especially excited about the game because she is always watching the Yankees with Grandma Krause on TV. This will be her first live game.

Hope everyone has a great Memorial Day Weekend.

Charlton: Since his move to regular C.P.A.P yesterday he is doing very well. His feedings are the same and we are just waiting now for him to gain some weight.

Savannah: She had to be put on the NIV C.P.A.P since her desaturations have become so frequent. They also changed her feedings to be continuous like her brothers. She is now on 7 mls. continuously, rather than 20 mls. over 3 hours. They feel that this will help with the Apnea spells.

Charlton: Today was a big day for Charlton because they put him on regular C.P.A.P. Up until this point he was on C.P.A.P with Nasal Intermittent Ventilation (NIV). He seems to be tolerating the change and is on 21% oxygen, which is room air. He did have one major desaturation, but this was during his eye exam which is very typical. Both CJ and Savannah had their first of many eye exams today. This is to give the doctors a baseline to see if they develop a condition call ROP (Retinopathy of Prematurity). This condition could cause blindness.

They also increased his feedings to 6.5 mls. continuously. In addition, they added MCT (Medium Change Triglycerides)to his diet 4x a day to build up his calorie intake. He is gaining weight very slowly which has us and the doctors concerned. However, I am happy to say he finally hit his 2 lb. milestone.

Savannah: She is having a difficult time with her saturations and had 4 episodes today where they dropped drastically, two requiring her to be bagged. We are praying for her little lungs to get stronger and for her brain to tell her to breathe.

They have increased her feedings to 20 mls every 3 hours. They told us this is the max. for her feedings with no more increases.

Day 41

Today was a very special day for Chuck and I. We finally got to hold our son for the first time and loved every minute of it. I didn't think I would get my chance to hold little Charlton because his daddy wouldn't share. The nurse had to intervene so I could have my turn.

Unfortunately we didn't have the same opportunity with Savannah because she is still not well enough to be held.

Savannah only has two more days left of her antibiotics and had her central intravenous line removed today. They also increased her feedings to 18 mls every three hours.
She is scheduled to have another head ultrasound on Thursday.

Charlton's feedings are still at 6 mls continuously. He is still just shy of hitting his 2lb milestone. However, he does get weighed tonight. They are also decreasing his respirations and his oxygen saturation was at room air (21%) for most of the time we were there.

There is not much to report from today.

The main objective right now is for the babies to grow. The doctors have increased their feedings and Charlton is just shy of the 2 lb. mark. I am anxious to see if he will hit that mark tomorrow.

Everything else is status quo.

Today Grandma Krause and I had a nice visit with the babies.

Charlton: Although his saturations levels are still fluctuating he had a decent day. His feedings are going well and we are hoping he has hit his 2 lb. milestone. Unfortunately we will have to wait until tomorrow AM to find out since he will not be weighed until 1 am or so.

Savannah: She also fluctuates with her saturations day to day. Today she dropped so low while I was there that they actually had to bag her. (very nerve racking)

On a better note she is continuing to fill out and looks great. She is now at 2 lbs. 5 ounces.

Today was an exciting day for me because I finally got up enough courage to change Savannah's and Charlton's diaper. I also had the chance to take their temps. It was not nearly as difficult as I thought it was going to be.

Both babies are doing well and everything is else is status quo (a good thing).

Charlton: Today has been a very good day for him. The doctors have lowered his C.P.A.P settings, which is a good thing. He still hasn't gained much weight, only 10 grams last night. However, he is now up to 6ml continuously so he should start packing on the weight soon.

Savannah: She also had a decent day. She continues to fluctuate on her settings, but for the most part is doing well. They have also increased her feedings to 10 mls every 3 hours. She weighed in last night at 2 lbs. 2 ounces. However, she is also retaining a lot of water so it would probably be safe to say she is at her 2 lb. milestone.

Today Chuck and I had a nice visit with the babies. Both Savannah and Charlton seemed to have a good day. Chuck had the chance to hold Charlton while the nurses where changing the bedding in his Isolette. Chuck also changed Charlton's diaper and checked Savannah's temperature. I also had the chance to check Charlton's temperature.

Everything else is status quo (a good thing)

Charlton: His saturation levels are still all over the place. However, the doctors assured us that this is to be expected with the smaller babies since they were not suppose to be out in the world yet. He is doing well with his feedings, but is still burning a lot of calories by working so hard to breathe. He is also strictly on milk and is no longer getting TPN (Total Parenteral Nutrition).

Savannah: She also continues to be all over the place with her saturations, but is not as bad as Charlton. He keeps the doctors on their toes more. She is also doing well with her feedings and is up to 10 mls every three hours. She is also on TPN and gets some extra sodium. We did hear today that they are going to hold off on her Cardiac Echo until she is off her antibiotics. She has been on antibiotics since her surgery due to a very serious infection. The fear that the doctors had was that the infection would attack her major organs. They checked her kidneys a week or so ago and they looked ok. They don't anticipate it attacking the heart, but will still need to check, which is why they are doing the Cardiac Echo.

Savannah has also hit her 2 lb. milestone, however, some of the weight is due to her water retention from the sodium.

Grandma and I visited the babies today. I haven't seen them for 5 days and Grandma almost a month. They looked good to me, their color is much better and they are starting to look like they are filling out. You don't see their ribs every time they inhale. Savannah has gained a little more weight. She weighed in last night at 1 lb 15 ozs. Charlton lost 10 grams. I got the chance to change Charltons diaper, hold his hand, and take his temp. Savannah was not cooperating with her sats so we chose to leave her alone.

Charlton: It has been 4 days now that Charlton has been on his C.P.A.P. He has been working very hard to stay on C.P.A.P and is definitely getting a little weaker as a result. The doctors are really trying to keep him on C.P.A.P so that they do not have to put him back on the vent.

The more equipment he is on the more danger for infection.

He also continues to have periods of Apnea. Both Savannah and Charlton get caffeine on a daily basis for their Apnea.

Caffeine Intravenously, what a great invention.

He is doing well on his feedings
(5 mls continuosly), but is still not gaining much weight because he burns so many calories in order to breathe.

Savannah: She is also working hard to stay on C.P.A.P and continues to have periods of Apnea, but they seem to be getting a little better. She is doing very well on her feedings and has been bumped up to 9 mls every three hours.

She is also scheduled to Cardiac Echo this week. They are checking to see if the infection she developed a while back has attached to the heart.
As you can imagine we are anxious to find out the results of this test and will keep you posted once we know.

HAPPY MOTHER'S DAY

It was nice to share my day with the babies Godmother Aunt Sue. I was also pleasantly surprised when I noticed the handmade cards with the babies photograph on each of the babies Isolettes wishing their mommy a Happy Mother's Day. Another item to add to their scrapbook.

As Aunt Sue mentioned in yesterday's update the babies love to compete with each other to see who can scare mommy the most. They were a little better behaved today, but still continue to fluctuate in their saturations.

Charlton and Savannah both weigh 1 lb. 13 oz. (Only 3 more oz. to go until they reach their 2 lb. milestone)

After bringing Aunt Sue back to the Airport I got to spend some additional time with the babies, which I thoroughly enjoyed.

I hope all moms enjoyed their Mother's Day as much as I did.

Saturday, May 10, 03:03 PM Great Aunt Sue/Godmother
What a joy to visit the twins on their one month birth anniversary! Of course, they are the cutest and brightest kids in the NICU! Today they learned a new trick - Charlton would take a dip on his oxygen levels and then rebound and Savannah, not to be out done, would take a dip and then recover. I think they like to keep the staff on their toes and make the alarm bells ring. Sitting in between them and observing the action is like watching a tennis match in a Vegas Casino. Seriously, it is a bit unnerving - but they are being cared for by an excellent staff - and we are grateful. Got to go - time to play "animals" with Ashley.

Charlton: The doctor decided to extubate him this afternoon and put him on the C.P.A.P. The first blood gas numbers did not look good so they added a Nasal Inv., which they said is helping him. I guess only time will tell to see how this works out for him.
They stopped his feedings to give him some time to adjust to the new equipment and will start them again a little later in the day.

Savannah: She has being doing ok on the C.P.A.P, but are starting to notice a trend with her Apnea. Her saturation levels really drop after she eats because of the food and all the air from the C.P.A.P that stays in her stomach. She is continuing to be fed a 6 ML every 3 hours over a 2 hour period.

Charlton: His chest x-ray this morning still did not look that great, however, the doctor still wants to try to extubate him today. The doctor feels that the problems he is having may be caused by the intubation tube in his chest. At this time they still have not extubated him, but we think they will later tonight or possible tomorrow morning. We are really hoping/praying that the 3rd time will be the charm. Once he is extubated he will be put on C.P.A.P again.

They have increased his feedings to 5 ml every hour. He now weighs 1 lb. 12 oz. Only four more to go until he reaches his 2 lb. milestone.

They also gave him a binky/pacifier today, which he really seemed to enjoy. (see new pics.)

Savannah: She continues to amaze us by how well she is doing. We learned some new information today on her status which showed us how strong she really is. A while back I mentioned that she had an infection just after her birth. It turned out that the infection was life threatening and that the doctors really did not expect her to survive it. In addition, the infection could have led to Meningitis. They informed us that they did a spinal tap on her today for Meningitis and this came back negative.

She is not gaining as much as Charlton, but they have increased her feedings today to be 5 ml every hour as well.

She weighs 1 lb. 11 oz

We had a very nice visit with the babies today and are still currently at the hospital since this morning. We also found a local park in Chatam, NJ that Ashley really enjoyed.

CJ: He seemed to be resting peacefully for most of the day and still has his ups and downs with the vent. He is still on his feedings and is slowly gaining weight.

Savannah: She has also been resting peacefully today and continues to do well on her C.P.A.P. Her brain ultrasound was done this morning and showed that she is still at a level 3 bleed. They are also checking to make sure that no water appears on the brain or else they would need to put in a shunt. Luckily it appears that no water is on the brain. They will continue to check for the next 6 weeks or so to make sure it does not develop.

They have also increased her feedings again and she now weighs, 1lb 11oz.

Both babies were re-checked for a disease called CAH, which came back as negative so we were very pleased with that. They were also checked for Cystic Fibrosis which also came back as negative, another good thing.

Both Savannah and CJ had a fairly decent day.

CJ: Is still having problems with his lungs and it appears by x-ray that the right lung is still collapsed. He is still doing well with the lower settings on the conventional ventilator. He is now 1lb 10 oz which is actually the same as Savannah.

Savannah: She is doing very well on the C.P.A.P and we are being optimistic that she will continue to do well on it. She also weighs 1 lb. 10 oz. They had to stop her feedings a few times yesterday due to the reserve of "green stuff" that was in her belly. However, as of late last night they were going to start feeding her again 2 ml and hour.

Today we will be getting new results of Savannah's brain bleed and are praying for a miracle that it has disappeared. We will also be attending a class tonight that explains life in the NICU for the family. I guess we are in for the long haul. Most babies that are in the NICU stay in the NICU until their due date. My 40 week due date would have been July 29th. We are just hoping and praying that they will be able to get well enough to come by then.

We have also found a wonderful "MicroPreemie" group online that has been extremely supportive and has been able to answer a lot of our questions since they have been or are currently in the same boat as us.

Not a whole lot has changed in the last two days. Savannah's stomach got over inflated from the c-pap. and her feedings so they have stopped her feedings for the last 24 hours but she's due to start feeding again tomorrow morning. She is doing well on her c-pap (almost 4 days now) and needing less supplemental oxygen. No changes for Charlton, he's still intubated and he's weening off of the supplemental oxygen slowly but surely.

Charlton has took a turn for the worse tonight and has to be put back on the ventilator. We were really hoping that he was going to be able to hold his own, but his little lungs are just not ready to work so hard.

Savannah still seems to be doing ok with the C.P.A.P.

The babies are still doing ok on their C.P.A.P. The nurses are having to constantly adjust their settings, but for the most part they are handling it. They are both still on the same feeding schedule as noted on Wednesday. For the most part they are status quo, which in their case is good news.

We also want to thank everyone for your continued support and prayers.

We called the hospital tonight (10:05pm) to see how they are doing with the C.P.A.P and so far both are doing ok with it. We are very proud of them both.

We were surprised when we got to the Hospital today to find that Savannah was no longer on the ventilator and doing well! Then while we sat there with Savannah they took Charlton off the ventilator too! Charltons transition was really scary and he needed to be bagged but he seems to have calmed down now. Dr's say the next 48 hours will be a huge test and struggle to see if they can remain off the ventilators. What they are on now is called C.P.A.P. (continuous positive air pressure). They are getting oxygen through their noses but now they have to do the breathing. Now they don't have anything obstructing their vocal chords so they can cry if they want to, I haven't heard them cry yet. Other than that they are going to try to leave Charlton alone until Friday and I think Savannah is having some blood work done around 2 pm today.