Wednesday, January 31, 2007

Emma, Katie, Austin, and Matthew (almost 3 mos .old!)

I can't believe my little pumpkins are getting so big!!

Tuesday, January 30, 2007

Doctor Visit.........

So, we went to the Doctor yesterday for Synagis shots (RSV) for Matty, Emma, and Austin, as well as first visit for Katie, and weight check for Matty. It took Tom and I awhile to get them ready for the big adventure out in the snow! Anyway, doctor's visit went well. The weights at 2 months, 3 weeks are:
Austin 12 lbs!
Emma 9.9 lbs
Kaitlin 8.3 lbs (she was discharged from hospital last Tuesday weighing 7.6 lbs-she gained almost 1 lb in one week!)
Matthew 6.10 lbs (he gained 3.5 oz from last week)
Doctor and I are both converned about Matty's weight. We have decided to make his formula a 27 calorie formula compared to a 20 calorie formula. Doctor hopes the higher calories will make him put on the weight. We will continue with the Prevacid and see how he does.
Doctor said Katie is doing wonderful. Once she hits 9-10 lbs, we will increase her bottle feeding amount. We are very excited about that!

Kissing Sisters.........

Here they are, Emma and Katie kissing each other!! And we can't for get Nicholas playing out in the first snow of the season! He loved playing outside with Daddy.

Thursday, January 25, 2007

Katie's First Day Home

Daddy, Emma, Matty, and Nicholas

Getting Ready for Bed............

Matty, Emma, Katie, and Austin..............all about to get their pj's on................look at belly difference between Matty and Austin! OMG!!


Here are the infamous balloons that Nanny promised Kaitlin on her first night home. Nanny brought over balloons and "goodies". Nicholas was upset because he thought goodies were toys, not desserts!!!

Wednesday, January 24, 2007

They are all home......................

Katie is home! I am overjoyed.............and over tired!!! No, so far so good! She is doing great as I am trying to learn her feeding equipment better!
From the top clockwise, we have Emma, Austin, Matty, and Kaitlin..............together again!!!!

Tuesday, January 23, 2007

Katie's coming home!

Later today, I get to bring my daughter home for the first time! I will meet with CHOP Home Care @5pm at her bedside to learn all the feeding equipment being supplied to us. After this, Katie will be on her way home! It has been 2 months and 3 weeks since she has been born, and we are so excited to have her home with us! I will try and post pics later of our little girl's homecoming..........

Friday, January 19, 2007

They're getting so big!

Here are Emma, Matty and Austin together, and Daddy and Kaitlin before her surgery today!

Katie's surgery went well! Tom and I took a class today to learn how to care for Katie and her GJ tube. It seems like it is very involved, but I'm sure once we get the hang of it, it will be okay. We are so happy that our insurance company has approved us for a nurse to come to our house 8 hrs day/7 days a week for two weeks. The next two weeks, the nurse will come 8 hours a day/5 days a week. After this first month, a re-evaluation will be done. I am happy that I will get some help with Katie's feeding equipment, even if it is temporary. Neonatologist was very positive today. He expects her home probably Tuesday!He feels she is "neurologically" okay. He thinks her gag reflex will be back by Mother's Day. He says she is doing "wonderful", but again, we have to let her "write her own book". He basically told me that Katie and I both need a break. He told me to take her home, enjoy each other, and not to worry about anything for awhile. Let nature take its course with her. He told me to keep an eye on her for now, but come around Mother's Day, we'll re-evaluate her developmentally, and with respect to her GJ tube, and decide what has to be done at that point.
I am just happy that she will be home shortly. We plan on having a cake the night she comes home to celebrate! My mom has been promising her red balloons on the day she comes home, so red balloons it is!!!!

Wednesday, January 17, 2007

Tuesday, January 16, 2007

Katie's GJ tube............

Katie is scheduled to have her "GJ" tube put in this Friday, 1/19/07. Docs seem to think she will be home within days! We're so excited! With this GJ tube, she will have to fed through her belly. We are told this is temporary-maybe anywhere from six months to one year. She will be on 18 hour continuous feeds, with two 3 hour breaks per day. During these two 3 hour breaks, I will bottlefeed her a formula thickened with a rice/oatmeal mixture. When her swallow study was done, it was determined that she has frank aspiration with thin liquids, while she does much better with thick liquids. In any event, we are excited to have her home soon!

Matthew is doing better. At his weight check on Monday, he was 6.3lbs, up from 5.9 on 1/4/07. He is on Alimentum and I put cereal in his bottle. It seems to have helped a lot with his comfortability and overall behavior. He cries less and acts as if he is in less pain. He will have another weight check in one week-so we hope he is around 6.10lbs by then.

On advice from a friend, I bought a front carrier from BAbies R Us. It has been a godsend with Matty and Emma. They sleep very peacefully while laying on my chest..................and I get to keep my arms free! What an excellent invention!

Saturday, January 13, 2007

matty, austin, katie, and emma (9 weeks old!)

After the bath..............

Matty, Austin, and Emma after their baths tonight................seems like only Matty enjoyed it!

Friday, January 12, 2007

Nicholas, the big brother

This is our bedtime ritual each night with Nicholas. He chooses which baby (tonight a special treat-all 3!!) go in his bed with him while he gets tucked in. He likes to snuggle with each of them He calls Austin "his big guy", Emma "his favorite-his prett sweet girl", and Matthew "his little guy". He loves trying to hold the babies-he gets so excited! He is a great big brother!

Thursday, January 11, 2007

Here are the 3 amigos. I just wanted to show you all the size difference in the three. Tom went on the scale today with Austin, and we think he weighs between 10-11 lbs. Now, when we did this with Matty the other day, it read about 6lbs.
But, they are all getting so big!

Wednesday, January 10, 2007

Miss Katie.............

So, here is our pretty little girl.............smiling away! I received the call from the CHOP neonatologist today. Bad news-Katie cannot swallow thin liquids well-she aspirates. She does do better with thicker liquids, however, she tuckers out too quickly. She would not be able to sustain herself this way. The other problem the doc talked about was Katie not having a gag reflux. The speech therapist was sticking her fingers down Katie's throat, and Katie was not gagging. So, the question is, Why isn't Katie's brain telling her to gag? Doc seems to think this may clear up as her tracheamalacia improves. In any event, Katie will be getting a "GJ" tube put in sometime next week. This will be done under sedation by the Radiology department. This tube is similar to a "G" tube, however, will not allow her to throw up her formula, which since she does not gag, could cause aspiration, and pneumonia, and hospitalization. This tube requires 18 hours of continuous feeds. (It's not like I'm going anywhere anyway!) And then she will have two 3 hour breaks, in which I will bottlefeed her. Doc expects this GJ tube to remain in place for six months to a year. She will have follow up appointments with GI Tube Clinic, Feeding team, as well as Early Intervention. At some point, about six months, she will have a follow up with Neurology to do a repeat MRI.
The good news is it appears Katie will be home sometime in the upcoming few weeks. We are so happy she will be coming home!!

Tuesday, January 9, 2007

Our little burrito....................

So, this is what Matty looks like when he goes to bed at night.....................all swaddled up and nowhere to go! I have to say I have become an excellent swaddler! He sleeps in a boppy at night-the elevation seems to help his reflux.
So, Katie made it safely to CHOP today. Tom went up to see her this afternoon and she look great! Tom says her room looks like a normal hospital room (she shares it with another baby separated by a sliding curtain). She even has her own television-not that she will use it!! We are able to bring up a swing and bouncy seat for her, as well as clothes for her to wear. I have packed all that up tonight-I will bring to her tomorrow morning. Since she's over 2 months old now, she wants to be stimulated-no more just laying in a crib; she wants to play! Anyway, nurses told Tom they are attempting to schedule her repeat MRI, repeat scope, and repeat swallow study. Nurses also told Tom that if the G tube is necessary, she will come home one week after they put that in. But, we are still hoping she will bottlefeed!

Friday, January 5, 2007

Matty and Emma's 2 month checkup

So, we went to the doctor's yesterday for Matthew and Emma's 2 month checkup. Emma weighs 7 lbs 13 oz!! But, Matty only gained 2 oz in one week (doc would like th em to gain about 1oz/day), so our little peanut is only up to 5lbs 9 oz. I talked to the doc in length about Matty's reflux. We have decided to switch him back to Alimentum formula, increased his Zantac medicine, and schedule an appointment with a Pediatric GI doctor. We also took him for bloodwork yesterday to make sure all is ok-he's been looking quite pale to me and I just want to rule out there are any issues with his bloodwork.
So, amazingly, we switched him to the Alimentum immediately yesterday, and the difference was amazing! Instantly, he did not vomit, and he seemed so much happier-I guess because he was actually keeping something down and felt full! He slept much better, did not cry when we fed him-Alimentum really helped! So, hopefully, when we go back in one week, he will have gained weight appropriately.
Oh, and as Matty was on the weighing table, he was on his belly. Tom was watching him get mad, and all the sudden, he rolled over!!! So, amazingly our little peanut is so strong he rolled over just like our little "meatball" Austin! The boys are rolling over-I guess I have to start working on the girls!!!
As for Katie, she is going back to CHOP on Monday. She will be re-evaluated with a swallow study, MRI, and scope. Docs want to see if there is any improvement with her tracheamalacia, and whether she can bottle feed. It is my understanding if she CANNOT bottlefeed, she will then come home with a feeding tube in her nose, or a more permanent one in her belly. When I say permanent, I mean permanent for a few months only. Eventually, when her tracheamalacia improves, she will feed on her own. It just depends on how much her windpipe has strengthened.

Tuesday, January 2, 2007

Austin rolled over!

I forgot to mention that last Thursday, 12/28, Austin rolled over. I put Austin, Emma, and Matthew on their bellies for "tummy" time, and within 5 minutes, Austin was on his back! I was so proud of him-he's such a big boy! The next day I put him on his belly again, and within 5 minutes, he rolled over again!!! He's getting so big!