Weekly Fact - Week One

Nasogastric tube: A tube that is passed through the nose and down through the nasopharynx and esophagus into the stomach. Abbreviated NG tube. It is a flexible tube made of rubber or plastic, and it has bidirectional potential. It can be used to remove the contents of the stomach, including air, to decompress the stomach, or to remove small solid objects and fluid, such as poison, from the stomach. An NG tube can also be used to put substances into the stomach, and so it may be used to place nutrients directly into the stomach when a patient cannot take food or drink by mouth.

No more feeding tube

After a long night and no sleep Raegan and I got up and got ready so I could take her to the pediatrician for her first visit after leaving the hospital. The doctor said that Raegan looks great. Her weight is up to 5 lbs 7oz. We also took the feeding tube out, Raegan is no longer needing it. That's right Raegan has been eating every feeding from a bottle, and even better she has been eating more than the minimum required amount. On Saturday night we started using the Dr. Brown bottles, let me tell you it works great. We have tried so many bottles and nipples, and this one by far works the best. I recommend it to any one who has an infant.

One last thing, since I have come to know so much about the medical field, I have decided that I would do a medical fact of the week.

You know you're a preemie parent when...

If this list looks familiar, you might be a parent of a preemie baby! We have to laugh about it to keep our sanity! :)

You know you're a preemie parent when...

You measure everything in cc's

Luxury = sleeping three hours in a row

You can change your baby's diaper with one hand

In the course of the same day, you have wanted to slap and bear hug the same NICU nurse

You feel a secret pull of jealousy when one of your friends delivers full term

You have gotten a rash on your hands from washing with hot water and the NICU soap... eight times in one day

The statement "breastfeeding is simple and natural" makes you laugh -- or cry, depending on the day and the hour.

Your baby has ever outgrown an outfit... while s/he was wearing it.

You cry when you're happy, laugh when you're mad, and throw things across the room when you're sad.

You could drive the route from your house to the hospital in your sleep... and maybe you have.

You can't remember what you talked about before feeding schedules, diapers, and growth charts.

You're more interested in your baby's diaper than the State of the Union

Your idea of a vacation is walking outside to get the mail

When someone offers you their hand to shake, you think twice, envisioning the germs that you might take home from them

The sound of your baby crying is beautiful, not annoying.

While everyone else coos, "He's so tiny!" your six-pound baby looks huge to you.

Your heart almost bursts with love at least once a day

You would climb to the top of Mt. Everest, barefoot, if it would help your baby to grow healthier, bigger, or stronger.

You not only know what "bilirubin" is, you have had several extensive conversations about it.

You never knew how grateful you could feel that your baby has gained an ounce.

You know where all the vending machines are on your floor of the hospital... and which ones have the good snacks.

You literally live your life one hour at a time.

The security guard at the front door of the hospital just waves you in when he sees you.

You are grateful for the smallest things now -- a shower, clean socks, a meal that you didn't have to cook, a friend who has a whole conversation with you without offering you any useless advice.

You had to give up your shower today to make time to read this list.

First day home

Raegan has been home for 24 hours now. I can't believe it. Wait, I can, I was up all night. Being a parent to a child that has been in the hospital since birth is different than being a parent to a child who is at home. Baby in hospital = sleep, baby at home = no sleep. I can't wait until Raegan sleeps through the night. I am sure that will be a while from now. We have to wake her at least every 4 hours to eat. She has to eat 180ml every 12 hours (and in the hospital that would say 180ml Q12). Raegan did come home with a feeding tube (I had to learn how to put that in before she came home, it was not so bad), but we are hoping that she will start eating more by mouth and we can take the feeding tube out soon. Raegan also came home with a monitor. It lets us know if her heart rate drops, or goes to fast. This doesn't happen very often, maybe once every few days, but they just want to make sure that she stops having spells before she stops wearing it.

So any ways on to things here at home. The dogs have been great with Raegan. They come check her out when she cry's. I am sure the dogs are tired from being up some much last night. One of the dogs, Sayde, laid on our bed and leaned her head into the bassinet and just watched Raegan sleep. I wish I would have had the camera.

Well Raegan is just starting to wake up from her nap. It's time to eat. I will post more pictures later on tonight, or sometime tomorrow.

Coming Home

I am going to the hospital for the last time, I get to bring Raegan home. I am very excited. I will post pictures later and update you on how the day goes.

Getting Ready

So I talked with the doctors today and Raegan is going to come home on Thursday. She will still have her feeding tube, and she will have to be on a monitor, but she is coming home. I sure that both will be gone within the next month. Raegan is doing good, she just needs to work on eating more from a bottle, and she does have a spell every few days.

The staff here said that I am a pro and should have no problems at home. I am going with it. I know I will do fine.

So the count down begins until she goes home. 48 hours and counting.

Maybe Friday

News on the street is Raegan might be home by Friday. Raegan just needs to go five days without any bradycardia spells. She has gone two days, so three more to go. If not this week I am sure Raegan will be home next week.

Raegan has changed from her scheduled feedings to just needing to meet a required amount within a 12 hour time period. We are still working on breastfeeding, Raegan is starting to get the hang of it. I think the more practice she gets the better she will do.

I can't wait for Raegan to come home. To think that she will be three months old next week and she has never been outside, the only time she has been out of the NICU was when she went for her surgery's. This will be bitter sweet. I will miss the staff at the hospital, the residents, the nurses, the doctors. I will never forget the people that have come to know us. Raegan and I will be back to visit. This will be a big change, I wont know what to do with myself not driving to the hospital everyday. I am sure that Raegan and I can find things to do to fill our day.

Well for now I better get to bed, but I will keep everyone updated on when she is going to come home.

Surgery is over

Raegans new shunt
Raegans big girl bed
Raegan did very well in surgery today. The only issue was she had a hard time waking up from it. She is a little upset right now, I am sure that her head hurts. I made another little video of after surgery to show her new scars. Once Raegan is feeling better I will post another video. You can check out the after surgery video by clicking here .

In Surgery

early this morning
So Raegan is back in surgery right now. She has been back for about an hour, it shouldn't be to much longer. I made a little video of her right before she went back you can check it out by clicking here . I will post another video and blog once she is out of surgery.

10 am

The doctors have came by and said that Raegan is going for surgery at 10am. A little more than 12 hours to go. So Raegan's favorite doctor just came in and did the last tap from her current shunt. This is a big step for Raegan and she will be another step closer to going home. We will have to wait and see how she does after surgery, but I think we will be going home in a few weeks. I am going to keep my fingers crossed, but I wont get my hopes up. We are going to let Raegan take her time and not come home to soon. We don't want to be making any trips back here if we don't have to.

Thursday

Raegan on what should have been her due date
Raegan has reached 4 lbs 7oz. We have been waiting for Raegan to gain enough weight so she could have her second surgery to have the permanent shunt placed. So the big day is going to be on Thursday. I am nervous and excited all at the same time. I know that Raegan will feel better after all of this is done. This also means we will be even closer to coming home.

Way to long

Raegan and her favorite doctor
You know you have been in the hospital to long when the hospital staff makes you feel like family. The staff can joke with me and I can joke back. It helps take the edge of the fact we are still in the hospital. I am so great full for the staff, but I am ready to come home and bring Raegan with me. There are some staff that cares a lot about Raegan, they spoil her. I couldn't be in a better place.

So a little about Raegan she is 4 lbs 1 oz and 16in long. She is getting so big. Based on her weight gain in the last 2 weeks, I am hoping that within the next two weeks Raegan will have gained enough weight to have the second surgery and then we will be very close to going home.

2 Months Old

Raegan is 2 months old today. She weighs 3 lbs 11oz. She is getting so big. Raegan was moved out of her isolette to a crib on Sunday night. This means she is maintaining her own temperature. This is one step closer to going home. She is still on a low flow nasal cannula. I think within the next week she will be off of that. She has been working on eating from a bottle with a special nipple called a bionix. The bionix is a controlled flow baby nipple. It has five different settings, 0 is like sucking on a pacifier and 5 is like sucking on a slow flow nipple. Raegan is needing it set to 1. Without this nipple she does very poorly when eating from a bottle.

On Monday the doctors did another head ultrasound and Raegans ventricles had increased in size to 1.3cm on one side and 1.2cm on the other. The doctors have been taking 12ml of spinal fluid from her head each day since Monday, and they will continue until they do another head ultrasound tomorrow or Friday. It is sounding like Raegan is going to have to have a permanent shunt placed, but we are not sure when. We know that she has to be at least 5.5 lbs, so it could happen any time after that. So speaking of weight, the doctors have increased Raegans feedings to 35ml every 3 hours. Hopefully this will help Raegan gain weight faster.