Home Sweet Home

Kaitlyn and Grayson are both doing well and growing like weeds. Kaitlyn is now rolling all over the place. "Big", but younger, brother Grayson is now trying to roll over, too.

Both babies are starting Occupational & Physical Therapy next week. The therapists will be coming to our house twice a month. This is just to help get the babies where they need to be developmentally.

It is so good to go home at night and see my sweet babies.

Please remember in your prayers all the familes with babies still in the NICU. Some were not as lucky as we are and my heart goes out to them.

Michelle

They just keep growing and growing and growing

Kaitlyn and Grayson are now 7 1/2 months old - 4 1/2 months adjusted age. Kaitlyn rolled over for the first time this weekend. Grayson is still satisfied just lying on his back playing. Kaitlyn went to see her surgeon, Dr. Barnhart, at Children's Hospital today. She weighs 13 lbs 2 oz. The doctor said that she is doing great and he sees no problems with her. I am still working on getting this website up to date with all the info from their birth until now.

New pictures of the twins

Home, Home, Together at last

Kaitlyn Is Home!!!!!

We went and got her on Wednesday, October 18th. Both my babies are finally home and together. We layed them on the floor together and they both were so happy. They just cooed and smiled at each other.

Grayson's Checkup and Kaitlyn's surgery

Just a quick update on Kaitlyn and Grayson

Grayson weighed 8 pounds, 9.5 oz and was 20.5 inches long at his checkup last week

Kaitlyn came through her surgery like a champ and she is eating like there is no tomorrow. Guess she is scared they might take her food away like has happened to my poor little girl so many times before. She weighs 5 lbs 12 oz and we may get to bring her home by the end of the month.

We have put an offer in on a wonderful home and hope to hear some good news about it this week.

I am back at work now full time until Kaitlyn comes home.

An update on the twins

Things have been wild around here since Grayson has come home.

We sold our house in just 10 days and we have to be out by tomorrow. My mom and I packed all last week and this week and Tuesday the movers came and moved all of our stuff to storage.

Kaitlyn is scheduled for surgery tomorrow for her ostomy takedown , Sept 22 - the same day we close on the sale of the house. I will be at the hospital and DH will be at the lawyer's office.

Another thing that has happened is that I received a call on the 17th that Kaitlyn has a broken femur. It is not just fractured, it is broken in two. She is wearing a splint right now due to her ostomy bag they were unable to put a cast on it. They are planning to reset it tomorrow during the surgery for her ostomy takedown.

Other than all that, things are better. Kaitlyn now weighs 5 lbs 3.5 oz and she is back at Children's Hospital. One week ago Grayson weighed 6 lbs 10 oz and I bet he is over seven pounds now. I will try to post pictures soon.

Kaitlyn's 2nd emergency surgery

Had a scare with Kaitlyn today.

The hopsital called and they were rushing her to emergency surgery. She was having a crying fit when the doctor was working with her leg, trying to resplint it. Somehow she manage to push put 6 inches of her intestine through her ostomy. The surgeon had to cut her open and get the intestine back in there. Everything is still a go for her ostomy takedown on the 22nd.

She is doing fine, however they are giving her a paralytic medication that causes her to be paralyzed so that she cannot do any more damage to herslef. They are also sedating her which means she is pratically in a drug-induced coma.

Grayson is Home

We brought Grayson home Thursday night, August 31st and it has been a whirlwind. I think he slept about 14 minutes Thursday night and maybe 30 minutes Friday night. Last night was muuuucccchhh better.

My is little boy is home. Now, to get Kaitlyn home too.

A good day in the NICU

All is well today.

Grayson weighs 5 lbs 1 oz and is taking 60-70 ccs every 3 hours. No heart rate drops and we are now on day 3 of his 5 day countdown.

Kaitlyn weighs 4 lbs 6 oz and she is getting to start eating again today after 10 days with nothing. She is going to start off slow, getting only 5 ccs every 3 hours.

Grayson's countdown and Kaitlyn's ileostomy

Grayson is on his third countdown to coming home posted He starts over today at day 1. He had two bradys yesterday. Dropped his heartrate to 55 and 67. Everyone tells me that he is waiting on Kaitlyn to come home with him.

Kaitlyn is doing better. Hopefully they will start feeding her again tomorrow. Last x-ray was clear with no signs of NEC. As soon as she reaches 5 lbs, she is 4 lbs 2 oz right now, and is on full feeds they will send her back to Children's to have her ileostomy put back together

For those who don't know, an ileostomy is a surgically created opening in the small intestine, usually at the end of the ileum. The intestine is brought through the abdominal wall to form a stoma. Ileostomies may be temporary or permanent, and may involve removal of all or part of the entire colon.She has an ostomy bag over the "stoma" - the intestine which is outside of her body - and her stool goes into this bag. It is really no worse than a dirty diaper.

Kaityln Grace - 4 lbs 2 oz

Eric Grayson - 4 lbs 15 oz

Grayson is not coming home Saturday. The earliest he could come home now would be Monday night. I am sad. :-(

Grayson may not be coming home Saturday. He had a heartrate drop this morning. He dropped from 160 to 55. I will talk to the doctor tomorrow to find out what they decide.

Kaitlyn looked good today. She is such a beautiful little girl. I will try to post more pictures of both of them soon. Her x-ray today was clear. No sign of NEC now!!!!

Good and Bad news

Good News - Grayson is coming home Saturday. This is so awesome

Bad News - Kaitlyn has NEC again. They have stopped feeding her for 10 days and she is back on IV fluids for at least 10 days. She has already been through so much. We have come to far to lose her now. I love you Kaitlyn!!!!

Just wanted to give you an update. The babies are now 10.5 weeks old.

Grayson weighs 4 lbs 7.4 oz and is taking all his feeds by bottle. He is off his amonophylline and was moved to an open crib on Tuesday morning. I have been able to breastfeed him once a day and he is doing great with that.

Kaitlyn is still struggling. They changed her from breastmilk to Pregestimil about a week and a half ago. They seem to think that this will help her gain weight. As of this morning she weighs 3 lbs 5.6 oz. That is down from a high of 3 lbs 7 oz. They are slowly trying to reintroduce her to breastmilk. They have started letting me nurse her once per day with yesterday being the first time. She did great.She is such a little trooper and it breaks my heart to see her struggling like this.

9.5 weeks old today

Grayson weighs 4 lbs this morning and I get to try to breastfeed today

Kaitlyn weighs 2 lbs 15 oz and they are going to try her on a special prescription formula today. She is "dumping" - putting out more than she is taking in right now. They believe that this may be due to her NEC surgery and her ileostomy. Just pray that she starts gaining weight and growing. She has a strong will to survive and she is such a fighter. It hurts me to see her struggle so much.

She was NPO for 3 days and lost a few ounces. Kaitlyn is being fed 10 ccs every 3 hours. How can my baby girl grow like that? She loves her bottle and wolfs it down in just a few minutes. Then she looks around like "where is the rest of it mom?" It just makes me want to cry.

Grayson is getting 35 ccs every 3 hours. He is not too crazy about his bottle but will take it if he has to. The nurses say he has "lazy white boy syndrome". Tomorrow the lactation consultant is coming for his 5 o'clock feed and I am going to try and breastfeed him for the very first time. They took him off his amonophyline as of midnight last night. They say he may be in an open crib by the weekend with a target date of coming home in about 3 or 4 weeks.

I am so worried about Kaitlyn. She has struggled so much since she was born. It scares me, how little she still is.

Kaitlyn's eyes

We spoke with the eye surgeons yesterday afternoon. She has Stage 3 Retinopathy of Prematurity in both eyes and Plus disease.

This is a definition of ROP - Retinopathy of prematurity (ROP) is a potentially blinding eye disorder that primarily affects premature infants weighing about 2¾ pounds (1250 grams) or less that are born before 31 weeks of gestation (A full-term pregnancy has a gestation of 38–42 weeks). The smaller a baby is at birth, the more likely that baby is to develop ROP. This disorder—which usually develops in both eyes—is one of the most common causes of visual loss in childhood and can lead to lifelong vision impairment and blindness. ROP was first diagnosed in 1942.Today, with advances in neonatal care, smaller and more premature infants are being saved. These infants are at a much higher risk for ROP. Not all babies who are premature develop ROP. There are approximately 3.9 million infants born in the U.S. each year; of those, about 28,000 weigh 2¾ pounds or less. About 14,000–16,000 of these infants are affected by some degree of ROP. The disease improves and leaves no permanent damage in milder cases of ROP. About 90 percent of all infants with ROP are in the milder category and do not need treatment. However, infants with more severe disease can develop impaired vision or even blindness.
About 1,100–1,500 infants annually develop ROP that is severe enough to require medical treatment. About 400–600 infants each year in the US become legally blind from ROP.
Stage I — Mildly abnormal blood vessel growth. Many children who develop stage I improve with no treatment and eventually develop normal vision. The disease resolves on its own without further progression.
Stage II — Moderately abnormal blood vessel growth. Many children who develop stage II improve with no treatment and eventually develop normal vision. The disease resolves on its own without further progression.
This is what Kaitlyn has Stage III — Severely abnormal blood vessel growth. The abnormal blood vessels grow toward the center of the eye instead of following their normal growth pattern along the surface of the retina. Some infants who develop stage III improve with no treatment and eventually develop normal vision. However, when infants have a certain degree of Stage III and "plus disease" develops, treatment is considered. "Plus disease" means that the blood vessels of the retina have become enlarged and twisted, indicating a worsening of the disease. Treatment at this point has a good chance of preventing retinal detachment.
Stage IV — Partially detached retina. Traction from the scar produced by bleeding, abnormal vessels pulls the retina away from the wall of the eye.
Stage V — Completely detached retina and the end stage of the disease. If the eye is left alone at this stage, the baby can have severe visual impairment and even blindness

The surgeons are going to perform a new procedure on her where they will inject an "antibody" into her eyes. A week after the procedure they will look at her eyes again to see if the procedure worked. I know that God, our divine healer, has her in his hands.

Eric Grayson
Kaitlyn Grace

Bottle time was last night

I got to give both Kaitlyn and Grayson their bottles last night.

It was a very special time.

Kaitlyn latched on well and drank all 12 ccs that she is supposed to get every 3 hours. She was still sucking when I took the bottle out of her mouth.

Grayson is supposed to get 29 ccs every 3 hours. He took about 10 ccs out of the bottle. He was just not very interested in the bottle. I think he prefers to just have the milk poured into his belly.

Another update posted

Grayson weighs 3 lbs 2 oz and Kaitlyn weighs 2 lbs 10.5 oz -

We are going to try bottle feeding this evening when I get to the hospital. I wanted to try brestfeeding first but we have to try the preemie bottles first. This breast pumping thing is for the birds.