Our Miracle Babies

2010-04-22T19:29:00.001-07:00

April 22, 2010

2010-04-22T19:24:00.001-07:00

Wow, Charlton and Savannah are two years! Time sure does fly. We are getting geared up for the March for Babies Walk coming up on Sunday and CJ and Savannah have their 2 year old wellness visit tomorrow. Looking forward to their progress thus far. Next week they meet with a team of people at Good Sheppard Rehabilitation Hospital to evaluate them and their progress. Sometimes we come home with a list of new specialist, but I am confident that they are going to get a good report card this time.

2009-09-04T05:18:00.000-07:00

Well it's been along time since I have made a post. The twins and and our Daughter Ashley have been keeping us very busy. The twins are doing very well and have hit a lot of milestones this past summer. CJ has learned to walk just prior to his 1st birthday. Savannah also amazes us by her contiued progress. She learned to crawl, sit up and stand all in the same month. Now she is preparing to walk by cruising the furniture. She does tend to drag her leg, which is something the doctor is watching. Both babies are having some challenges with their speech and have now added Speech Therapist to their host of doctors. Savannah is our main concern with the speech because she really does not babble like her brother. Either way, the doctors are super impressed with them as we are. Our daughter Ashley just started Kindgarten this week. We are very excited for her, but also worried about all the new germs she will be bringing home.

The babies both were weighed in yesterday at the Pulmonologist. Savannah weighed 16 pounds 3 ounces and Charlton weighed in at 18 pounds 6 ounces. The Pulmonologist seemed concerned about their weight and wants them both to see the Gasto. Doctor. Currently CJ already sees the Gastro. doctor.

2009-06-11T18:36:00.000-07:00

2009-06-11T18:35:00.001-07:00

CJ had his CF test again last week and thankfully the test came back negative, again. I think it is safe to say at this point that he definitely does not have CF. The other good news is that Savannah has become more vocal. She is really making a lot more noise and is louder than she has been in the past. Both of them continue to amaze us everyday.

2009-05-19T16:47:00.001-07:00

The 3 kids went to the Pulmonologist today. They all did well with the lungs and we are going to start adjusting some of Ashley's medicine. The babies will still be on the same steroids. They were concerned about CJ's weight because instead of gaining weight over the last month he actually lost weight. They gave us a new food action plan for him. They also want him to have the Cystic Fibrosis Sweat Test done again. This was a major concern for us while he was in the NICU and now it is a concern again. He will also be having some chest a x-ray done again. Savannah goes to the ENT on Thursday for a follow-up and to make sure the cyst in her throat didn't get any bigger. That's all for now.

2009-05-17T18:30:00.000-07:00

2009-05-17T18:29:00.000-07:00

Last week the March of Dimes asked us to be the 2010 Ambassador Family for our area. We will be sharing our story via newspaper, radio, various events and possibly tv.
We are also thrilled to report that Savannah started crawling last Friday. She does seem to favor one leg to push off, but this is something that the Physical Therapist will work with us on.
CJ is also doing very well. He not only sits now on his own, but also stands. I think he will be walking by the end of June. He has also learned to clap.
They also seem to be more into each other. I caught them a few times holding hands. It really is fun to watch them and how they interact with each other.

2009-04-01T17:43:00.001-07:00

We are very excited because Savannah just really started rolling over today. She has a few times in the past, but we never really witnessed it. However, today she even rolled over for the Physical Therapist 3x. Yeah!!!! Our little CJ is still cruising right along and is in to everything. He is always still little Savannah's toys. But now that she is more mobile she can get him back. He also cut a top front tooth yesterday. So he now has 3 teeth. We are still waiting for Savannah to cut a tooth, which I think will be any day now.

2009-03-30T18:50:00.000-07:00

Last week the babies had their Special Care Follow Up appointment at Morristown. The babies seemed to like the attention and playing on the mat with the doctor and all the other people checking on their progress. For the most part they did well. There are a few things we have to watch. Savannah's head size is on the smaller side so we need to watch that. Also she is starting to rock which could be the sign of some kind of sensory problem, but we will just have to wait and see. The doctor would have liked them to both be sitting up at this point, but neither one are quite there yet. In my eyes they are doing very well and I am thrilled with the progress they have made thus far.

2009-03-23T19:01:00.001-07:00

If you would like to join our team for the March for Babies 5K walk on April 25th at East Stroudsburg University, E. Stroudsburg, PA please email me at Jkrause1@ptd.net . If you would like to sponsor our team and make a donation please go to www.marchforbabies.org/krausetwins

2009-03-23T18:59:00.000-07:00

CJ and Savannah had their monthly doctor appt. last week and Savannah weighed in at 14 lbs. Not really sure why she did not gain any weight for the month, but no one seemed overly concerned. CJ is now at 15 lbs. 12 ounces.

Today, they had their hearing exam and both passed this time. YEAH.

Tomorrow Savannah has a follow up with the Orthopedic who will do new xrays on her spine to make sure everything is ok. If you re-call the last x-ray showed that she had scoliosis and would probably need to be put in a body cast. However, when the Orthopedic looked at her, he said no way does her spine look like the x-ray.

Wednesday they go to Morristown to meet with the developmental team to see how they are doing over all.

March for Babies

2009-03-06T19:49:00.001-08:00

Help me reach my goal!Sponsor Me at March for Babies!

2009-03-05T19:51:00.001-08:00

March for Babies

2009-03-02T07:25:00.000-08:00

2009-03-02T07:01:00.001-08:00

Our trip to Philadelphia was a success. We were told by the Neurosurgeon that her had flattening is very mild and she would not require the cranial banding. He also mentioned how good she looks for a 24 weeker. As you can imagine we are always glad to hear that. Actually most of the doctors we go to comment on how great they both look for being 24 weekers.

2009-02-22T05:30:00.001-08:00

The babies had their monthly check-up last week and CJ weighed in at 14 lbs 12 ounces and Savannah is on here way to catching up at the whooping 14 lbs. We were shocked to find out that they both had double ear infections so now they are on antibiotics. CJ also cut a tooth on 2/13 and I don't think Savannah is far behind.

The babies were due to have another hearing test, but since they have the ear infection we had to cancel.

Savannah has an appt. with a Neurosurgeon at St. Christopher's in Philadelphia tomorrow to check her head to see if she will need cranial banding. We will not move forward with it unless it is medically necessary.

2009-02-09T11:19:00.000-08:00

2009-02-09T10:43:00.000-08:00

Last week we had a very nice visit with Grandma Krause. The kids really enjoyed the visit. It was also nice for Chuck and I to have an extra set of hands to help us out.

We also took Savannah to see a doctor about her head shape to see if it was medically necessary to have cranial banding done or if it was more cosmetic. It was difficult to find a doctor to evaluate her, but we did find one about 45 minutes away at the Lehigh Valley Hospital. The doctor started the evaluation process with Savannah and about 1/2 way through we realized that we had the wrong type of doctor. We were suppose to go to a Neurosurgeon, not a Neurologist. I was a little annoyed because I was given wrong information when I booked the appointment. But, in light of the mistake we actually walked out of the office with a smile on our face. The doctor was extremely nice and knowledgeable. She reviewed Savannah's medical file and then proceeded to evaluate her. She said that Savannah looked wonderful for a child that had such a severe brain bleed. She didn't seem to concerned about Savannah's head shape, but said that she would find someone for us to bring her to for a second opinion. We will now be taking Savannah to a doctor in Philadelphia (2 hrs away) to evaluate her. Hopefully it will be all good news.

Now for the bad news, we are all sick with a stomach bug. Hopefully it will be quick. It sure is hard taking care of a family when you are sick yourself.

The babies will 10 mths. old tomorrow.

2009-01-30T19:27:00.001-08:00

Savannah had her appointment with the ENT (Ears, Nose and Throat)doctor yesterday. The doctor did a scope on her throat and said her vocal cords look good, but she does have some cyst behind them. This is nothing to be worried about at this time, but she will need to be follow up on in 4 mths. It won't affect her speech, but could affect her breathing if they get bigger. The doctor didn't seem too concerned at this point.

2009-01-26T19:07:00.001-08:00

Today Chuck took the babies to the Audiologist to re-evaluate their hearing. Before they left the NICU they both passed the test. However, today they both failed on the left ear. It must be a twin thing. Actually we also learned that CJ has an ear infection, which could be the reason he failed. Looks like Chuck will be taking him to the Doctors tomorrow. Savannah is scheduled for a consultation with the Ears, Nose and Throat Doctor on Thursday. Luckily the doctor will be at a clinic 1 hour away, rather than the 2 1/2 hour drive to the Geisinger Medical Center. We were just having her evaluated due to her lack of speech, but now I am wondering if the speech problem is related to the hearing. I guess we will have to wait and see. Please continue to keep our little ones in your prayers.

2009-01-21T16:33:00.000-08:00

We spent most of Martin Luther King Jr. day at a the doctors.

The babies had their monthly visit with the Pediatrician to get their Synagis shot as well as some other immunizations shots. We also went through their developmental milestones and 2 hours later we were leaving the office. Savannah weighed in at 12 lbs 8 ounces and Charlton weighed in at 14 lbs 8 ounces. They were not happy with either one's weight and are getting more concerned about Savannah's lack of weight gain. They switched her formula back to Neosure, which is what she was taking in the NICU. We then rushed home to have lunch before we headed off to the Gastrointestinal Dr. 1 hour away. They reviewed Charlton's history and also change his formula to something call ElaCare, which is suppose to be the most broken down formula he can have. You can't even buy it in the stores it has to come through a medical supply company. They also changed his reflux medicine that needs to be mixed at a special pharmacy that does compounding. CJ also had an XRay of his head. I asked the doctor to look at a bump on the back of his head and he thought it would be a good idea to have an XRay. The results came back today and everything is fine.

2009-01-15T14:09:00.001-08:00

Today the babies had a follow-up Eye appointment and little Charlton did great. He has no issues at this time. He will be seen again 1 year from now. Savannah's eyes are better in some areas, but her nearsightedness is worse. Actually the numbers doubles since her last visit. At her last visit she was not tracking items and it seemed as though she had a lazy eye. It was also noted on her last item that she was nearsighted. We were happy to hear that she is tracking toys and doesn't appear to have a lazy eye. The doctor said that she will definitely need glasses at her next appointment which will be in 4 mths. He said nothing would change that. I said "I don't know about that, we have had many miracles happen with these babies"

2009-01-12T19:14:00.000-08:00

2009-01-12T19:10:00.000-08:00

2009-01-12T18:50:00.000-08:00

2009-01-02T07:18:00.000-08:00

2009-01-02T07:09:00.000-08:00

2009-01-02T07:02:00.000-08:00

2009-01-02T06:56:00.000-08:00

Happy New Year

2009-01-01T20:49:00.001-08:00

Happy New Year

The babies met with a team of specialist at Morristown Memorial in what they call their "Special Care Follow up Program." Charlton passed with flying colors and even showed them how he could roll back over after being on his stomach. This was the first time he had done that. They said he is functioning at a 4-6 mth level. (He is currently 5 months corrected) Savannah was measured at a 3-4 month level. She is not yet rolling over like her brother so they gave us some positioning techniques to work with her on. They also want us to change her formula back to Neosure to get the extra calories. We are also going to be scheduling an appt. with a Neurosurgeon to look at the shape of her head to fit her for a helmet. Lastly, she will also need to see an Ear, Nose and Throat specialist to scope her throat to see if there was any damage done to her vocal cord. She may have done some damage when she extubated herself shortly after her operation back in the NICU. She does make some sounds, but it is very quiet and no where near as loud as her brother. They will go back to the Special Care Follow up team in 2 months to be re-evaluated. Also, they will then get their hearing tested again. For the month of January CJ will be seeing another GI doctor for his gastro problems and then they will both be meeting the Opthamologist again for eye exams.

2008-12-28T17:43:00.001-08:00

Sorry for such a delay in updating the site. Just prior to Christmas the babies had their monthly doctors appointment. We were surprised to find out that CJ hadn't gained any weight for the entire month. Chuck and I attribute this to his reflux that the doctors say he does not have. We are going to another GI in January to see what they think. Savannah has moved up on the weight scale and is now 13 lbs, where CJ is still 13 lbs 8 ounces. They are starting on level 2 foods this week, which includes things like Chicken and beef. The doctor still seems concerned about Savannah's spine even though the specialist said he didn't see anything. This has us a little concerned just because the treatment would need to be very aggressive, rods in the back and or body cast. We would really hate to put her through any of that. We still continue to pray for both of them.

We are also proud to report that CJ rolled over for the first time on December 23rd. Since then he has been rolling everywhere. However, it can't seem to figure out how to roll himself back so he gets frustrated very quickly. We are hoping Savannah will be rolling over soon as well, although she doesn't seem too interested in it.

They both go for a Special Care follow up on New Year's Eve at Morristown Memorial where they will meet with a team of specialist to check on their milestones or any alarming issues. We are hoping/praying to come home with a good score card.

Happy New Year to all.

2008-12-20T12:51:00.000-08:00

Our Miracles..Charlton and Savannah

Click Link to See Our Video on Savannah and Charlton

2008-12-20T09:46:00.000-08:00

2008-12-10T18:51:00.000-08:00

2008-12-06T18:06:00.000-08:00

2008-12-06T18:05:00.001-08:00

Savannah and Charlton recently had their monthly doctors visit.

Savannah weighed in at 11 lbs and is 24 1/2 inches long. Charlton now weighs 13 lbs 8 ounces and is 24 3/4 inches long.

Charlton had his appointment with the Gastrointestinal Doctor on Thursday. The doctor said that he has Growth Acceleration Syndrome, in other words (GAS). We are still a little surprise because sooo much of his bottle comes up with every feeding. We are going to start feeding him more cereal and vegetables/fruits by spoon. The doctor also mentioned that he can go on whole milk. I think we are going to hold off a while on that.

Savannah and CJ also met with their Pulmonologist on Thursday. Both currently have a cold and have caused them to both have a little wheeze in their lungs. They currently are getting breathing treatments every 4 hours or so. They actually seemed a little bit better today. The doctor also mentioned the X-rays from the last visit did show scar tissue for both babies, however, it wasn't as bad as he had expected. However, he has decided to put them on a preventative steroid which they will most likely be taking for a long time. We are all to familiar with the steroids because Ashley has to take them everyday as well. I guess it's good to have some knowledge in that department. We are also very familiar with how to use a Stethoscope, which has come in handy to hear the wheeze in the babies lungs.

Savannah will also be seeing a Neurosurgeon to see what is going on with the shape of her head. Actually it really doesn't look to bad, but is a little flat on one side. Basically he will tell us whether or not she should have a helmet.

We are still amazed everyday on how well both babies are doing. They are coming up on their 8 month mark, 4 months corrected. Both babies are still so close to rolling over, it should be any day now. Savannah has also changed so much in the last month. She is much strong and can hold her head up when on her belly. She is also much more alert and just starting to babble a little bit. She also will smile at you when you give her a big smile. These are all things that CJ has been doing, but just taking Savannah a little longer. At the end of the month they meet with a team of doctors to give us a progress report on their development. Basically we will find out if they are hitting their milestones and if not, what could be happening

2008-12-03T19:52:00.003-08:00

Sorry it has been some time since our last update. We have been back and forth to the doctor with CJ and his reflux. We have been changing his formula a lot lately, but can't seem to find the right balance. We thought for sure the soy formula was going to be it, but sure enough after a few days he started with his reflux again. Actually, according to his Upper GI, he does not have reflux. We schedule an appt. for him at Lehigh Valley Hospital, however, they are not able to see him until Mid-January. Chuck and I were at such a lose, because we are not sure what to feed him because he always seems in such pain. Luckily we were able to get him in an appt. at Morristown Memorial Hospital tomorrow. We are just hoping they can help us figure out what is going on with him. Other than this issue, both babies are doing extremely well. They also have to follow up with their Pulmonologist on Friday. This will just be a routine appt. We are definitely feeling overwhelmed with all of the doctor appt's, but we do realize they are a necessity no matter how healthy the babies look. People are amazed how well they look when they see them in person.

2008-12-03T19:52:00.001-08:00

2008-11-24T21:15:00.000-08:00

2008-11-24T21:11:00.000-08:00

2008-11-24T21:10:00.000-08:00

CJ and Savannah are doing very well. Savannah is getting much stronger and is now able to hold her head up off the floor. They both go to the doctors on Wednesday for their monthly check-up/shots. We are looking for to Great Aunt Sue coming to celebrate Thanksgiving with us. We definitely have a lot to be thankful for this year.

2008-11-19T19:28:00.001-08:00

Yesterday we took the babies in for Upper GI's and a Swallow Test. Both did very well. We were shocked to learn Savannah has reflux. She spits up, but not too much. CJ on the other hand has very bad reflux and the test didn't show anything for him. We will see a GI doctor to discuss at a later date.

Savannah also had her appt. with the Orthopedic Doctor. Again, she amazes us. After 3 people noticing the scoliosis and the x-ray showing it with a measured curve, the Orthopedic could not see any problems. He said if she did have a 17% curve he would have sent us to another specialist to decide whether she should be having surgery to insert bars or to have a full body cast. Thank god....we do not have to make that decision. She will have x-rays again in 4 mths to monitor.

Savannah and CJ are both very close to rolling over. Just this week Savannah has made so much progress with her strength and has been holding her head up and came so close to rolling over tonight. They both did very well with the Sweet Potatoes and are now eating Carrots. Next week we will try the Squash.

2008-11-13T16:14:00.000-08:00

Well we finally heard back from the doctor today in regard to Savannah's xrays. Unfortunately it was not good news. She definitely has scoliosis. She has a 17% curvature in her spine and to be classified as scoliosis they need a 10% curvature. This is what they would normally find in a 16 year old. We are scheduled to see the Orthopedic on Tuesday. As you can imagine there are many concerns with this new development, because the curvature could affect her breathing and many other things if not corrected.

We are taking CJ to the doctor tomorrow for his reflux. He has been absolutely miserable lately. If he is not sleeping he is screaming in pain, it is very difficult to see him in so much pain.

2008-11-07T16:12:00.000-08:00

Today was a busy day with the babies. The Physical Therapist came this morning and noticed that Savannah side was not quite right it was bulging out on the side. She suggesting Chuck take her to see the doctor. Better be safe than sorry. Chuck took her advice and the doctor also thought it was kind of odd so then Chuck had to take them to the hospital so she could get x - rays of her spine. The doctor mentioned that it could be scoliosis, but it could also be nothing. We won't get back the results for a few days.

We also started CJ on Zantac tonight for his reflux. We are really hoping this will make him feel better because he has been very agitated lately.

On a good note, CJ rolled over a few times during Physical Therapy and is holding his head up very well. We are very proud of both of them and their progress to date.

2008-11-07T04:31:00.001-08:00

The babies are doing very well. They both started eating vegetables yesterday. They will eat Sweet Potatoes for 5 days and we will then move onto Carrots and other orange/yellow vegetables. After that comes the green vegetables and then onto fruit. They really seemed to enjoy the Sweet Potatoes and took to them without any problems.

It appears that CJ definitely has reflux so we are hoping to putting him on Zantac to make him a little more comfortable.

2008-11-04T16:07:00.000-08:00

2008-11-02T17:38:00.000-08:00

Yesterday we fed both CJ and Savannah by spoon. We thought for sure it was going to be a total failure, but we were shocked when they both took to it immediately. CJ couldn't get the spoon in his mouth quick enough. Savannah also seemed to have no problems with it either.

2008-11-01T16:05:00.000-07:00

2008-10-31T17:37:00.000-07:00

HAPPY HALLOWEEN

We took the babies out for about a 1/2 hour so they could see some of the neighbors.

Everyone had fun tonight.

2008-10-31T16:01:00.000-07:00

2008-10-31T15:56:00.000-07:00

2008-10-30T17:36:00.000-07:00

Today CJ and Savannah had their monthly pediatrician visit. The both received their RSV shot and Rotovirus Serum.

CJ weighed in at 12 lbs. 2 ounces and 24 1/2 inches long.

Savannah weighed in at 10 lbs. 6 ounces and 22 1/2 inches long.

The doctor and nurses commented on how great they look. We will also be introducing them to solid foods now. (This should be interesting)

Savannah is also starting to smile and wiggle around more. We are still waiting for her to find her voice. She only really cries if she is in pain or hungry, but no cooing or baby sounds yet.

2008-10-26T17:35:00.000-07:00

Finally we are all well again. The babies are doing well and progressing every day. Chuck and I have had a few lucky nights were they both slept about 6/7 hours in a row. CJ and Savannah have their monthly pediatrician check up on Thursday and will also get their shots at the same time

2008-10-22T17:34:00.000-07:00

The babies have both seemed to recover from their cold, but Ashley and I still have a lingering cough. I can't wait until we are all 100% again.

Savannah had her Eye Doctor appt. today to check on her mild ROP. The good news is that the ROP has gone away. However, the doctor said that she is near sighted and will need glasses at some point. She also said that she has some other condition that is common with preemies, but we can't recall the name. She has to go back in 3 mths. for another follow up on this new condition.

CJ is really coming along nicely. He is cooing and loves to laugh.

Savannah hasn't hit that milestone yet, but we are confident she will in her own time.

2008-10-19T17:34:00.000-07:00

Today was extremely busy for us because the babies had a number of doctor appointments. Our first stop was back at the NICU in Morristown to do a download of Savannah's Apnea monitor. It was nice to see their doctors and a few of the nurses who took such great care of them. As of today, Savannah no longer needs to be on the Apnea monitor..YEAH, finally free of wires. I must admit this will be an adjustment for me because I never really worried about Savannah because I knew the machine would let me know if there was a problem. It will be nice for her not to have those annoying leads stuck to her.

Then we were off to see their Pulmonologist. We really like this doctor and have asked him to take over the care of Ashley as well. For those of you who don't know, Ashley has severe Asthma and has been hospitalized seven times as a result. The doctor was impressed with how well the babies seemed to be handling the cold that they have. However, as mentioned before he would like us to do breathing treatments while they are sick, even though they have no sign of wheezing. We also met with a dietician who is working with us to get Charlton situated with a formula that works. We have also started to add rice to his bottle. We are hoping this will help him sleep better, especially through the night. We go back in 6 weeks for a follow up.

Savannah's eye appointment was canceled due to her doctor being sick, but she will have her eyes checked next week.

Our last stop was the hand surgeon who has been following Savannah in the NICU for her thumb that turned black. As I mentioned one time earlier the color in her finger came completely back. The surgeon was very impressed with the mobility and looks of her finger and said "she definitely dodged a bullet", I said "thank god". So overall we had a great day and the babies are doing wonderful.

2008-10-17T15:54:00.000-07:00

2008-10-17T15:49:00.000-07:00

2008-10-16T15:38:00.000-07:00

2008-10-14T17:33:00.000-07:00

The babies seem to be feeling a little bit better today.

They are still eating about every 3 hours. In CJ's case it seems like he is constantly hungry. I have a feeling we will be adding rice to his bottle soon because nothing seems to satisfy him. Savannah has seemed to take a step backwards on her feeding, but I think it has to do with her not feeling well. Savannah has really come a long way with her head control and is still getting stronger every day. She can now sit in the bumbo sit with out her head falling forward. She has also started to smile a little bit. We are so proud of the progress that they have made thus far.

Ashley seems to be adjusting better and really loves her brother and sister.

2008-10-12T17:32:00.000-07:00

I guess when you have two sick kids in the house it's difficult to keep the 3rd one from getting sick. Savannah started getting sick Friday. I think this is the first time that we really felt sleep deprived since the twins have been home. They have been quite unhappy and letting us all know. Hopefully this bug will be short lived. We have been giving both babies breathing treatment's per their Pulmonologist as a precaution. The good news is Ashley seems to be better, just a lingering cough.

2008-10-09T17:31:00.000-07:00

Our poor little CJ has a cold today and is quite miserable. Ashley has also been sick this week, so we are pretty sure we know where it came from. We have him hooked up to Savannah's Pulse Ox to monitor his Oxygen level. I was sure he needed to be hospitalized, but thankfully the doctor said that he is ok for now, but we will have to keep an eye on him. So far Savannah seems ok.

2008-10-08T17:31:00.000-07:00

The kids had a very nice visit this week with their Grandma. Savannah's infection has pretty much cleared up, although she will be on antibiotics for another week or so. Just this week Savannah has really shown alot of improvement with her strength. She is now able to sit in a Bumbo seat and her neck strength is much better. CJ seems to be doing ok with his new formula, which is much cheaper than the Nutramigen. Next week Savannah ad CJ have lots of follow up doctor appointments. Savannah has to see the neonatologist to review her Apnea. Then they both have to see their Pulmonologist and then Savannah has an eye appointment and then she will visit the hand surgeon. It will be an action packed day.

2008-10-03T17:30:00.000-07:00

CJ and Savannah both got their RSV shot today. In addition, the doctor changed CJ's formula again. Hopefully this one will be better because it is a lot cheaper. Savannah also got a new script for her infection. The infection looks to be healing very well, but the doctor wants to be sure she is getting the correct antibiotic based on the infection she has. He just received back her swab test which is why he switched the antibiotic.

2008-10-02T17:30:00.000-07:00

Today we celebrated Ashley's 5th Birthday. Since we were not able to have a lot of people over, I took Ashley to Chuck E. Cheese to play and then back home for cake. She had a great time, even CJ and Savannah got in on the action with the birthday hats.

Savannah's infection is healing nicely. Both CJ and Savannah go to the doctor's tomorrow for their first round of RSV shots. They will both get this shot every month up until April. Hopefully this will prevent them from getting RSV this winter.

2008-10-02T15:28:00.000-07:00

2008-09-29T17:30:00.000-07:00

Well the babies both recovered from having the rotavirus. However, we ended up having to bring Savannah to the ER for something completely unrelated. While getting Savannah ready for her bath last night I noticed about a 1 inch laceration underneath her armpit. The plastic lead from her Apnea monitor was pretty much embedded in her skin, which cause a major infection. Luckily she didn't have to spend much time in the hospital and was released later that night with oral antibiotics as well as antibiotic cream. I never thought we would be in the hospital for something like this. Savannah never showed any signs of discomfort, but I have to admit it looks really bad. Hopefully this will heal quickly without any further problems. Since she is basically wrapped in guaze we now have a problem with putting new leads on her to monitor her breathing. Right now we are improvising with a pulse ox machine that alarms when her oxygen level drops.

Charlton is back on the new formula. However, I am not impressed so far. He is still seems to be very uncomfortable after every feeding. Not to mention hungry about two hours later.

2008-09-28T15:23:00.000-07:00

2008-09-25T17:29:00.000-07:00

The other day at the doctors but babies received a serum to help prevent rotovirus. This is the second time they are getting the serum, however, this time they have had some very unpleasant side effects. We didn't know at the time, but just recently found out that this is a live virus. Both babies have been showing signs of the rotovirus. Poor Chuck has been changing diaper after diaper and the babies have been extremely cranky. Their little butts are so red and have been bleeding. We are hoping this will clear up tomorrow or they may start to get dehydrated.

2008-09-24T17:28:00.000-07:00

Savannah and Charlton had their monthly follow up doctors appt. yesterday. Charlton now weighs
10 lbs. and is 20 3/4 long and Savannah is not far behind at 9 lbs. 4 ounces and 20 1/4 inches long. They have finally made it on the growth chart, registering at about 5%. We thought they were due for shots, but they are not due until next month.

They also switched their formula to Enfamil Nutramigen to help with their GI track. Savannah was doing well on the Similac Neosure, but Charlton was always in pain and not very regular. (If you know of anyone that has Enfamil coupons that they are not using, please have them send them our way.)

Savannah's head is definitely looking better and the doctor is not concerned at all and thinks it will reshape itself in the near future.

Both babies are doing very well overall and the doctor seems happy with their progress thus far.

CJ is getting very strong and can almost hold his head up on his own. Savannah is getting strong every day, but is not at the same point as CJ yet.

2008-09-21T19:02:00.000-07:00

2008-09-17T17:28:00.000-07:00

Savannah had her first Occupation Therapy session today. The therapist seemed a little concerned because Savannah's color was very pale and she seemed very lethargic. She recommended that we get a pulse oximeter for her so that we can make sure she is getting enough oxygen. Savannah's alarm also went off three times in the short time that the OT was at the house. We had to do a download a few weeks ago and found that her alarm had gone off 280 times with in a 3 week period. The Dr. said they were false alarms, but Chuck and I have had to stimulate her on many occasions because she still breathes extremely shallow at times. We are glad to have the monitor, but it definitely wakes up everyone in the house, quite often.

Little Charlton is doing very well and definitely has his own little personality. He always wants to be held and cuddled. Savannah likes to be held as well, but he is much more vocal about it.

Both babies have been doing tummy time and we have definitely noticed the increase strength in their necks.

We consider ourselves very blessed because they really are good babies.

2008-09-14T19:05:00.000-07:00

2008-09-13T17:27:00.000-07:00

I am sorry I haven't had much to report on, but as they say, no news is good news.

CJ and Savannah are doing very well. They both had their physical therapy yesterday at the house. The physical therapist works with them to move their muscles to help prevent them from tightening. This is to help reduce the risk of Cerebral Palsy.

CJ did very well and was very active during his session. Savannah on the other hand wanted to sleep instead. Just as the PT was ready to leave Savannah woke up so the PT stayed to work with her for a little bit.

Savannah's head shape has become a concern for us since one side is extremely flat. We have to constantly change her position to help get this worked out. CJ's head seems to be nicely shaped.

The babies have been taking a little more formula, but still have trouble taking as much as they need. Savannah is also known for skipping a meal or two. Although we try our best to wake her up, she just can't be bothered. CJ on the other hand is very opposite in the fact that he is like clock work. Every three hours we know he will start crying and start rocking the crib by flopping all around to get some food. Sometimes we just stare at the cribs because we are amazed at the sounds that come out of them. They certainly do not sound like little baby sounds. Mainly sheep like sounds and a lot of grunting. Also, CJ's flopping like a fish sound.

Tomorrow we are hoping it is a nice day so we can join the nurses and doctors at the NICU annual picnic. This will give us the opportunity to meet other parents who have had similar experiences and to see many of these kids grown. Apparently they have been having this picnic for 25 years.

Ashley is still having a difficult time adjusting to have her brother and sister home. Although she loves having them home and wanting to be a little mommy she still craves her own attention.

Yesterday Ashley told daddy that she wanted to visit her grandmother. She went into her room and got dressed, packed her back and then was off to see grandma. She asked daddy if she could have a map, but fortunately she did not make it far because it was raining and daddy didn't give her a map. We are really trying to focus more on her needs as this has been a difficult transition for her.

2008-09-07T18:55:00.000-07:00

2008-09-04T17:27:00.000-07:00

The babies are both doing very well. CJ is definitely the little snuggler, where Savannah is content being left alone. However, we try to spend equal time snuggling each baby as well as Ashley.

Ashley is having a very difficult time adjusting and has regressed a little bit. We are hoping this phase is short lived.

We are getting a little cabin fever since we are only allowed to take the babies out while it is warm. They are not allowed a lot of people, especially other children until they get much stronger and RSV season passes. So it looks like we will be spending a lot of time home since RSV season is not over until April. They will, however, get shots to help prevent getting RSV. These shots are once a month until April comes around.

October will be a busy month for doctor follow up appointments. They have to see the Pulmonologist and Savannah will be having another Eye exam and will be seeing another surgeon for her thumb. For those who don't know, Savannah's thumb turned black when she was about 3 weeks old. The doctors thought she was going to lose her thumb, but one day when we arrived at the hospital we noticed it was no longer black and was pink again. The only problem is its shape and possible functionality. However, the surgeon thinks he may be able to fix it so it is fully functioning and looks normal. It really doesn't look bad at all, but we will take the doctors advice to have a consultation to make sure it will function properly.

2008-08-30T17:27:00.000-07:00

Having both babies home as been wonderful. We are still trying to get use to our new sleep schedule or should I say lack of sleep schedule. The babies are on a 3 hour feed cycle. However, by the time you change them and feed them an hour has already passed. So it is more like every two hours. Chuck and I take turns getting up so that we can get a few hours more of sleep. This seems to be working ok for us.

Savannah's monitor has been going off quite a bit the last few days, but we can't really tell if it is sleep apnea or a lead problem. Other than that, they are both doing very well.

2008-08-27T18:45:00.000-07:00

2008-08-27T17:26:00.000-07:00

On the way to Savannah's eye appointment we had to stop by Morristown Memorial for them to evaluate some frequent activity on her Apnea monitor. Thankfully they all turned out to be false alarms. Then we received even more good news from the Eye Dr. who informed us that her mild ROP is starting to regress. Her next eye appt. won't be for a few more months.

CJ is also doing very well.

2008-08-24T17:26:00.000-07:00

We are still getting use to having two little ones at home. Great Aunt Sue has been with us since the babies came home from the hospital, but unfortunately she has to leave tomorrow. We have been very lucky to have her with us, but now Chuck and I will have to get into some type of routine. The nights wouldn't be so bad if Savannah's monitor stopped going off every few minutes. Thankfully it is not going off because she stops breathing, but for her leads coming off when she wiggles in the crib. Chuck is in the process of sticking the leads on himself with medical tape to see if it will hurt her when the tape needs to come off. ( this is our solution for getting the leads to stick) It is actually a really funny visual with the leads on Chuck with a lot of tape. We are realllly hoping this works. Both the babies are doing very well and seemed to have adjusted to their new environment. They are both on the same 3 hour schedule for feedings.

Savannah has a eye appt. on Tuesday and we are hoping that the ROP has not progressed.

2008-08-22T18:36:00.000-07:00

2008-08-21T17:25:00.000-07:00

Since everyone is wondering how we did last night with both babies being home I thought I would put up a quick update. Thankfully Aunt Sue was here to help out with the feedings and for the most part we are all rested.

Savannah's monitor went off about 7 times last night, most were attributed to the lead placement. There were a few that we are not sure about, but didn't seem to be Apnea. I think the monitor probably woke up our neighbors because it is sooo loud. I guess CJ is use to all the beeping/loud noises at the NICU because it didn't seem to bother him.

2008-08-20T18:32:00.000-07:00

2008-08-20T18:17:00.000-07:00

2008-08-20T18:14:00.000-07:00

2008-08-20T17:25:00.000-07:00

We have been waiting 4 1/2 months for the day that we would have both babies at home. Thank God, today is that day.

We will be leaving for the hospital shortly because CJ has a follow up appointment with the surgeon. We will then go through the discharge information with the doctors.

Great Aunt Sue is also flying in from Ohio to help us for the week so she will be meeting us at the hospital.

I will be taking lots of pictures and will have them posted later tonight.

Thank you again to everyone for all of your support and prayers. God was definitely listening.

2008-08-18T17:24:00.000-07:00

Chuck and I had our Apnea monitor training tonight. Hopefully we absorbed it all. The Apnea monitor is fairly compact so we can easily carry it around with us. Savannah will basically need to wear this around the clock for a month or so. I had my daily mommy time with her before work and she just seemed so peaceful. She also had her shots today so that she can be on the same schedule as CJ. She is still on track to come home on Wednesday. We can't wait :)

CJ and Ashley spent some time with our friend/neighbor Moy who has been extremely helpful since day one.

We will continue to update the site when the twins are home. It may not be as often, but hopefully a few times a week. Thank you for all of your support and prayers over the last 4 1/2 months.

2008-08-17T17:24:00.000-07:00

Savannah passed her car seat test today with flying colors. She is scheduled to be discharged on Wednesday. Chuck and I need to have training for the Apnea monitor before she can come home.

CJ took his first bath at home tonight. We had to wait for his incision to fully heal. He really seemed to enjoy it.

2008-08-15T19:47:00.000-07:00

2008-08-15T17:24:00.001-07:00

Savannah is doing wonderful. I think everyone in the NICU is amazed how well she is doing considering the rocky course she has had all along. The doctor mentioned today that they are going to send her home sooner than we had expected since she is doing so well. The plan for now is to send her home on caffeine and an Apnea Monitor. Her expected discharged date is this Tuesday or Wednesday. Chuck and I couldn't be any happier.

2008-08-15T17:24:00.000-07:00

Savannah is doing very well. They increased her feedings yesterday morning and she was able to do all 8 bottles without any problems. They took out her IV since she no longer needs any other nutrient products. They also removed her feeding tube since she is able to take all 8 bottles. Now we just need to wait and see how she does without her caffeine. She also has to pass her car seat test and then she will be good to go.

2008-08-14T19:46:00.000-07:00

2008-08-14T19:45:00.000-07:00

2008-08-13T17:23:00.001-07:00

Savannah had a very good day and still has not had any desaturations. They are reducing her dose of caffeine to see what kind of effect it has on her. They are also feeding her by bottle for every feeding. She is now up to 30 mls and has been doing very well so far. Tomorrow they will increase her feedings again.

2008-08-13T17:23:00.000-07:00

Our babies are truely miracles and evidence of Gods work. Chuck and I have looked to our faith from day one and have never questioned our faith through all of the ups and downs. On that note, I have some amazing news to share.

Savannah's nasal cannula was removed last night at 10:50 pm and she has been breathing on her own ever since, WITHOUT ANY desaturations. She also was able to take 4 bottles, but only 15 mls at a time. Once she takes all eight bottles she will be able to come home. She also has to be weaned off her caffeine. I told the doctor that I wouldn't mind making her a cup of coffee in the morning, but they did not find as much humor in it as I did. If she comes off the caffeine and does well she will be coming home without oxygen or monitors. If they can't take her off the caffeine then she will remain on the caffeine and will most likely have an apnea monitor and possible oxygen, just in case.

She also had the opportunity to meet her Grandpa Jim and Grandma Patty yesterday, which she seemed to enjoy.

CJ has also enjoyed his visits with Grandpa Jim and Grandma Patty over the past few days.

2008-08-12T17:22:00.001-07:00

Today was a very busy day for both CJ and Savannah.

Savannah was extubated from the vent around 8:30 am and is doing very well with her breathing. She is back on the Nasal Canula with very low settings. She also took 3 bottles, however, each bottle only had 15 mls. They have to start feeding slowly after surgery and will gradually increase over the next few days.

She also had her exam which shows she has mild ROP. Basically, she may need to wear glasses at some point.

CJ also had his eye exam and passed with flying colors. No ROP present. Both will get there eyes checked again in 6 mths. as a follow up.

The doctor even mentioned to Chuck that Savannah could possible be home in 10 days or so, as long as everything continues to go well.

Thank God :)

2008-08-12T17:22:00.000-07:00

Today is a big day for Savannah. She is currently being extubated from the vent. Hopefully she will do better this time. She is also going to have a visit from her brother CJ, who is having an eye exam across the street from the hospital later today.

CJ now weighs 6 lbs 15 ounces
Savannah now weighs 6 lbs 14 ounces

2008-08-10T17:22:00.000-07:00

Savannah had a decent day, but is still on the ventilator. We are hoping that they will be able to take her off tomorrow. Her incision also looked much better today.

CJ is doing well at home and loves to be held. He is definitely getting spoiled.

2008-08-09T17:21:00.001-07:00

We were just informed that Savannah had to be re-intubated because she was having some major breathing issues with the Nasal Canula. They now have both arms in restraints to prevent her from pulling out the tube. They are going to keep her intubated for another few days so they can manage her pain, which they believe was the major cause of her breathing episodes.

The surgeon also wants the nurses to keep an eye on her incision because the color seems to be a little off.

Please continue to pray for our sweet little Savannah.

2008-08-09T17:21:00.000-07:00

Our sweet little Savannah decided that she no longer need the ventilator and extubated herself from the vent. this morning. When the nurse heard the bells going off she noticed Savannah waving the tube in her little hand. They quickly put her on Nasal Canula at 3 liters to help her breathe. So far she is doing ok, but is requiring a lot more oxygen than she has in the past. We are hoping this will change as her pain medicine wears off.