38 weeks

So if I was still pregnant I would be 38 weeks. It is still crazy to me that I had Raegan already. I have been watching the last 2 months of my pregnancy on the outside. We are lucky that things are going so good.

Raegan is really taking off and gaining some weight. She put on 6oz this week, putting her up to 3 lbs 6 oz. She has now doubled her birth weight. I am so proud of her she has over come so much. This week Raegan went for an MRI and a MRA. Both came back showing there was no blockage in her brain, which is good. I am glad to have those done and know that things in her head look good. The ventricules have shrank in size from 1.4 on the left side and 1.5 on the right to .7 on both sides. The doctors haven't been taking and spinal fluid from Raegans shunt this week. The few times they have tried nothing came out. They will do another head ultra sound on Monday to see if they should take off some fluid or not. This week we started working with a speech therapist to try to get Raegan to eat better from a bottle. It takes her a while to wake up and get interested in taking the bottle. We are hoping that with the help of the speech therapist Raegan will take off and eat most feeding from a bottle. So speaking of feedings they have increased Raegans feedings from 26ml to 28ml, hoping this next week to go to 30ml. Lets see what else happened this week. Raegan had another eye exam, and things still look good. They will do another eye exam in two weeks. We moved yesterday to another room in the NICU, it was a big step. Raegan is now what they call a feeder/grower. So for now things are going really well. Not sure when she is going to come home, but I am thinking maybe in 3-4 weeks.

7 weeks old

So Raegan is 7 weeks old. She is 3 lbs 1 oz, and 15in long. She has been going back and forth between 2 lbs 15oz and 3 lbs for about 10 days. I am glad that she over 3 lbs now. She has not got any longer in the past 2 weeks, but thats ok. She is starting to eat 2-3 times a day by bottle which is very exciting. As far as her head goes, they did a head ultra sound today, and we should have an update tomorrow on what is going to happen. The last few days they have only been taking 9cc from the shunt. I am thinking they will cut back from twice a day to once a day. I think we are also getting closer to Raegan not having to have the nasal cannula. One less tube that will be great.

Feeling Better

Last night I went to see Raegan and she is doing so much better. They put her back on the nasal cannula. Now she is much happier, Raegan hated having the et tube. Raegan also got to eat last night. It wasn't much, but as soon as she did she went right to sleep. I am hoping that today I will be able to hold her.

Before & After

Last few photos with out the bump


You can't really see the bump from the side


The bump looks bigger from the front

What we wish

A friend of mine emailed this to me... I think it will explain a lot


What we wish our family and friends knew about having a preemie/NICU/sick infant.

General NICU/Medical Questions/Visiting

• Call and ask if I want visitors. I wanted people to come see my baby, but I needed to know so I could be there. Most NICU's have a limited visitor policy, so I need to be able to do some planning.

• Please don't be hurt if I don't want you to visit. I may not have the energy. Please do not expect to hold the baby, as my time holding my baby is very limited and honestly, I can't spare that time with others.

• Please don't continually ask me when my baby will be coming home. I have no idea.

• Please tell me how cute my babies are and try not to go overboard on the "look how tiny!" stuff.

• Please take your cues from me and the other people in the NICU and don't freak out at every alarm.

• Research is great. Educating yourself is awesome. Please do not act like you are an expert on the subject because you read something on the internet or know a friend of a friend. Each baby is unique and different, and as such my baby may not fit into what you have read. Please do not attempt to teach me about my baby.

• I appreciate that you had a close friend or family member with a baby in the NICU and you have seen a NICU baby before. I hate to sound harsh, but if it wasn't your baby you really cannot completely understand how I feel.

• Don’t compare my child and her development to other preemies. It may give them hope but there will be other things that can happen to that baby that didn’t happen to my baby.

• Don’t expect me for dinner today, Sunday, any upcoming holiday maybe for the next year. Now, because I will spend it w either my family at home or in the nicu. Later because your child may give my baby rsv and it could hospitalize her or kill her. Or maybe she doesn’t like the loud crowd.

• Don’t ask about doll clothes.

• Don't then ask me why my baby isn't doing such-and-so yet, so-and-so's baby is doing it who was born within days...

• When you come into the NICU to visit my baby, focus only on my baby...don't peer at anyone else's baby. Privacy is nonexistent in the NICU, so we parents and visitors have to respect others' right to privacy and keep our eyes and ears on our own babies only.

• Ask me questions! There's a lot about preemie care and NICU life that people don't understand, not to mention questions about my baby's condition. Don't be afraid to ask me... most of the time I am willing to answer and explain because talking about it helps me understand it too, and if you understand more then you can be more supportive.

Illness/germs/After Nicu

• Please let me know if you are sick. If I get sick, I can't see my baby, so I don't want to risk it. If you are sick at all, please do not come and see my baby.

• Please don't tell me I'm being an overprotective first time mom when I won't let you hold baby or bring baby to your party, we spent months in the hospital, and are not eager to return.

• Please don't tell me I'm being ridiculous when I'm fastidious about hand washing and keeping sick people away from my baby, RSV kills little babies like mine.

• I wish that people would respect that just because she is home doesn't mean she is like every other baby.

• Don't even think about touching my babies without using antibacterial hand sanitizer... even if you think it contributes to allergies in our society.

• Don't expect to hold a baby when you come over (especially soon after they came home). I may not want them out of my arms.


Emotional Support

• Please don't preach to me. If you have not been here as the mother of a sick baby, you don't know anything about this.

• Please don't "should" on me. I'm doing my best. Please don't tell me how I "should" feel, react, behave. Please don't tell me I "should" live at the NICU, or judge me for staying at the hospital all the time.

• Please understand that while my baby is in the hospital that is where my focus is. Please don't expect me to come to social activities.

• Please don't give me parenting advice. I'm not really parenting my baby anyway; I'm doing what the hospital allows. I probably don't have the emotional energy to fight hospital policy.

• I'm still a new mom. I'm hormonal. Please be kind to me, and give me lots of breaks for any bad behavior.

• I'm tired. Please don't say "be glad your baby is in the hospital" or anything like that. I am not sleeping well; I'm either up pumping or worried for my baby.

• Please don't ask questions I can’t answer, like will my baby ever be "normal".

• Please don't casually ask "How's the baby doing?" Even a year later... there won't be a short answer unless I'm blowing you off and I hate to feel rude. If you really want to know then I'll usually be happy to share.

• PLEASE don't try to tell me that you understand, because unless your child/baby is sick, you truly, honestly DON'T.

• Please don't tell me how you know of this other preemie who's now 18 and 6 feet tall and completely healthy.

• Please don't tell me about another smaller, younger baby who is 'just fine'
because every baby is different, has had different circumstances in utero, and frankly, isn't my baby.

• It is not easier to be a new parent to a preemie because I'm "resting and letting someone else take care of her." I want to be taking care of her. Waking up every three hours to pump is not restful, and it is much, much harder than waking up next to your sweet newborn baby.


Gifts/ Physical needs/Cards

• Don't ask me what I need. I don't know what I need. Give me some suggestions if you want to help.

• Please feed me, even if I say I am not hungry - just leave the food where I can get to it.

• On the food thing, most homes need milk, bread, toilet paper, and laundry soap on a regular basis. If you want to help but don't know what to do, purchase a regularly used household item and drop it by.

• Bringing over dinner, without asking, was a gesture so sweet it brought me to tears.

• Baby gifts, even when my child is in the hospital, are wonderful and give me joy and something to look forward to watching her grow into (and I'm sorry if the thank you notes are late).

• Do drop off a care package of tabloid magazines, anything you know I like to read or something I like to do to pass time. Pumping rooms are so lonely and need something to read. Besides, the nurses also like tabloids and it takes the edge off sometimes.

• Do give me the cutest preemie outfit you ever saw and say you saw it and thought of my baby.

• Offer to bring me lunch at the hospital while I'm there with my baby, don't expect conversation, but if I seem to need to talk about it, let me even if you've heard it already.

Surgery Went Good

Alright the worst part is over, Raegan made it through surgery. It only took about an hour and a half. The shunt looks bigger than I thought, but she is really small. I think once she gets bigger and grows a little more hair you wont see it. Raegan is doing good right now. She has been squeezing my finger and she opened one eye to see if I was there. She is going to be going for an MRI in a little while so they can see if there are any other problems, and to see if they can see what may be causing the hydrocephalus.

I took some pictures and video of her before and after, I would love to post them right now, but the card reader in my laptop is not working. So I will post the pictures tomorrow.

Waiting

I am waiting for Raegan to go to surgery. This is killing me. I want it to be done and over with so I know that she will be ok. I know that she is going to be fine, but I still have to worry.

I will let everyone know how it goes later today.

Bad News

So today I went to the hospital to see Raegan and they are going to have to do surgery tomorrow. I haven't talked to the Nero Surgeons so I am not sure of all the details. I hope they call soon. I am wondering and getting anxious to know what is going to happen. So with this minor set back she wont get to come to the hospital that is closer to home.

I will have to figure out what I will do when she starts breastfeeding. I will be spending 12+ hours at the hospital since it is to far to come home and go back. Oh yeah and because there is so much traffic. There is a mom that had her daughter 12 days after Raegan. Her daughter was 12 weeks early. She has been very sweet and has since she lives only 10 minutes from the hospital she has offered me a place to take a nap or shower if I need it. There are so many nice family's going through what we are going through. It's nice to get support from them and to give them support.

I guess staying isn't going to be that bad. I really like the hospital staff. They have been great. I come to know the staff pretty well, and can trust that when I am not there they will take good care of Raegan. Some of the nurses that have taken care of Raegan come by and see how she is doing when they are not caring for her. It's nice to know that they care enough to come by and check on us.

So post can't end on a bad note. There is good news. Raegan did eat a full feeding today by bottle. She ate more than a full feeding. She is getting so big. I hope let we can bring her home in four and a half weeks.

I will keep everyone updated on how things go. I will bring the laptop with me to the hospital tomorrow.

Good News & Bad

Today there was good news are bad. I will give you the good news first. The approved the transfer and Raegan can go to SW. The bad news is that on Sunday the measured Raegans head and it was 1cm bigger. They did an ultra sound and the ventricles on her brain have gotten bigger. The Nero Surgeons are going to look at the ultra sound in the morning and decide if she will have to have surgery or if they will just wait and watch. If she has to have surgery she could a shunt put in.

A shunt is a narrow, soft and pliable piece of tubing (approximately 0.25 cm. in diameter) which is surgically implanted into the ventricle through a small hole made in the skull. All shunts have a valve system which regulates the pressure of the cerebrospinal fluid and prevents backward flow of fluid into the ventricles. It opens automatically when the pressure exceeds a certain pressure(usually called the 'opening pressure' of the shunt) and allows CSF to drain. The valve closes again when the pressure returns to the permitted level.

They could put in a short term shunt or a long term shunt. Not sure what they will do. I will update every tomorrow and let you know whats going on. For now I am really tired and I am off to bed. It will be a long day tomorrow, as it was today.

Roses Are Red

These roses are from our yard.

Five Weeks

Raegan is doing good. This picture is from yesterday. Today she had another eye exam, that went really well. They said things are looking good, and they will check again in two more weeks. They also went up on her feeds to 23cc. As of last night she weighs 2 lbs 11 oz. They will get her length tonight when they weigh her. My little girl is getting so big. Her grandma and grandpa came to see her today, and her grandpa said "man she looked bigger before". It is hard to tell how big she really is in the pictures. I will have to take another picture of her with something so you can compare her to the object.

First Smile

Today Aaron and I went to go see Raegan. She is doing really good. She is now on the nasal cannula and no longer needing the c-pap. I am happy that she has decided to be a big girl. So on to the big news of the day. Raegan smiled for the first time where we could really see her smile. She did it 3 times. She heard the doctor and I talking about her. The doctor said that she was really cute and she was going to have all the boys fighting over her. So I told Raegan that even though she is cute, she has to wait a long to have a boyfriend. Then she smiled at me. Raegan has more personalty than I think I am going to know what to do with.

Aaron and I also did a parent education class. We learn basic things about car seats, SIDS, just different things about bringing baby home. We also learned infant and baby CPR.

Tomorrow Raegan is going to have another eye exam. I hope that goes well. And early this next week it looks as if she will be moved closer to home. I can't wait. Less driving, and more time spent with Raegan. I will be able to come home in the middle of the day, and then go back in the evenings after dinner.

I will give you an update tomorrow and let you know how things are going.

First Bath

So Raegan is doing good. No changes to report. She did get her first bath in a tub today. She really enjoyed it. The next tub bath she gets I will make sure we get pictures.

One Month Pictures

One Month Old

I know it has been a few days since I have posted a blog. Things have been crazy around here. Lots of things going on. Last weekend my mom and I had a yard sale to raise money for Raegan, and we went to a birthday party. This week Aaron changed his work schedule, now working 6a-2:30p. We are getting back to normal. It's nice having Aaron home in the afternoons, and being able to cook dinner for him again.

So Raegan is one month old. She is currently 2 lbs 8oz and 14.5in long. She is doing really good. I have got to hold her every day this week. She has reached a full feeding and they are now adding supplements to the breast milk to help her gain weight, and get strong. They took her IV out on Tuesday. She is working on coming off the c-pap. They are sprinting her between the c-pap and the nasal cannula. She spends about 6 hours on the c-pap and then 6 hours on the nasal cannula, going back and forth. She really hates the c-pap. She is a much happier girl on the nasal cannula. She is ready to come off the c-pap for good, but she will come off it soon.

Other than that not much is changed with Raegan. Aaron got to hold her for the first time on Sunday. I told him that in order to hold her again he has to change her diaper! We are also in the process of trying to get the insurance to approve and pay for her to be moved to a hospital closer to home. I hope that might happen some time next week. For now I will keep driving to Portland to go see her.