Eye Update

The doctor's appointment's are finally starting to slow down. We had a marathon day of appointments last Tuesday--3 appointments in all, 1 in Salem and 2 in Portland. We do go back up to Casey Eye tomorrow, but that is our only appointment this week--if they don't make us come back. Lauren's eyes have been holding stable finally and the doctors are hopeful that things will start to regress on their own. Her Right eye actually looked slightly better and her Left eye has not gotten any worse at the last 2 exams. She does have significant ROP, and we were told that some doc's would recommend laser treatment now, but our doctor's feel that we are still okay to wait and see if things calm down on their own. If at tomorrow's exam things look the same or better as Thursday, we will probably be able to go a whole week before the next appointment! Here is a website that does a good job of describing ROP
http://www.lowvision.org/retinopathy_of_prematurityxx.htm

Lauren's weight on Tuesday was 7lbs 0.5oz & 18 1/4 inches long. Lauren seems to be adjusted to being at home now. She has been eating much better and is obviously putting on the pounds! She has even more neck folds and rolls on her thighs...too cute! She absolutely loves baths and loves being snuggled for nap time. She still sleeps almost all the time and we can't wait to see more of her personality. I bet she will be pretty feisty!

Oh...some of you wonder how our dogs have been with Lauren. They have been fantastic! We constantly brought home blankets with her smell home from the NICU, hoping that would help them know her scent. Maybe it's coincidence or maybe it worked, but they love her. They are so gentle with her and seem to already be protective. They love to lie by her when she is in her swing or having tummy time on the floor with us.

Lauren is Home!!

Lauren has finally come home! She came home on Thursday 8/20/09. 92 LONG days after her birth. Sorry it has taken me so long to update on here. We have been very busy with trying to figure out a routine with Lauren and going to doctor's appointments. We've been to numerous pediatrician visits, weight checks and eye exams.

Lauren was able to come home oxygen free and without an apnea monitor. YAY! We were prepared for her to come home with both and she certainly surprised us with not needing either. Everyone kept telling us "when they get it (breathing), they get it." And well...she all of the sudden got it! She went a full 7 days with no apnea/bradycardia spells as of the day she was discharged. When she started to hit the 4-5 day mark they started talking about sending her home in a few days. We had planned for Friday 8/21 after I got off work, but our insurance kept calling the NICU asking for an anticipated discharge date and on Wednesday 8/19 they said that if she is ready to be discharged she needed to go tomorrow 8/20. They threatened to not pay for Friday's stay since she was "medically stable." So, needless to say we brought her home Thursday. Luckily, my work was very gracious and allowed me to get off work early Thursday to get up to the hospital and have Friday off.

I don't think either of us really got any sleep that first night home. I was so paranoid about her stopping breathing in her sleep that I just stared at her all night long. We have been adjusting well and I think Lauren is finally getting used to not being in the NICU anymore. She didn't eat very well the first 5 days or so, but is now doing better. We were concerned and talked to the pediatrician about it quite a bit and she said not to get too worked up over it. The new environment and having us around all the time was a big change for her. Lauren weighed 6lbs 0.7oz when she was discharged and was 6lbs 6oz as of yesterday, so she is still headed in the right direction. We will have her weight checked again on Tuesday.

Lauren has had a few eye exams since being discharged. We will be going up to the Casey Eye Institute in Portland Friday afternoon because there has been some progression with her ROP. Her Right eye is "pre" stage 3 and her Left eye is stage 3 and on the verge on needing Laser treatment. The eye doctor said that ROP is usually worst around the due date, which was 8/29. There is still a chance that things will regress on their own. Hopefully that will happen because I really do not want her to have surgery again. It has to be done under general anesthesia and she would hopefully be able to come home the same day, but could possibly have to stay in the NICU again. :( Let's keep our fingers crossed that her eyes will look better on Friday!

That's pretty much the most up to date info. I will try and be better about updating on here. It's too tempting to want to just sit down and cuddle with my sweet girl while she still lets me. I am so in love with being a mom. It is the most amazing, rewarding, joyous and best job in the world. I am so content with being home with her. It is nice to get out of the house and work too though. Oh...some of you have been asking. Adam is on FMLA leave until 10/1 and I will hopefully take some time off after that. Adam is such a wonderful dad...it makes my heart melt to see him with her.

Talk to ya'll soon!

Little Chubster

Lauren has been doing pretty well and has been moved from the high flow oxygen to just a nasal cannula. If she does need to come home on oxygen this is the type it will be. We are still pretty much expecting her to come home with oxygen...but maybe she will surprise us. She is still having some episodes of apnea/bradycardia. Usually a couple for day shift and a couple for night shift. She just finished her immunizations this week and had her eye exam yesterday so those things may have contributed to her spells.

As for Lauren's eye exam yesterday, they found both eyes to be @ stage 2 ROP. Dr. Kaempf said that if stage 2 is all she ends up with that he will be very happy. The eye doctor said that both eyes are still in "early" stage 2 and that she is hopeful they will not worsen and will heal on their own. She will have another exam next Tuesday, so keep your fingers crossed that nothing will have worsened.

Bottle feeding is going okay. She gets tired out during some of her feeds and still needs to have the NG tube put in. She has to be able to take 100% of her bottle feeds in order to come home.

Speaking of coming home, Dr. Kaempf said he thinks 1-2 more weeks and she should be discharged!! Hopefully her bottle feeding will improve so she will be able to come home. All that feeding is hard work! We continue to be so proud of Lauren and how far she has come.

Last nights weight...drum roll please...5lbs 7oz!!

The 5lb mark!

Lauren reached 5lbs 1oz on Friday 8/7. She is still a little swollen in her eyes & feet, but is looking less swollen than she did a few days ago. Last night (Saturday) she weighed in at 5lbs 1.1oz. I can't believe she is over 5 pounds now. I thought for sure she would come home under 5lbs. Now we have a bigger selection for car seats to choose from. It doesn't seem like you have that many choices for ones under 5lbs. She is still fitting in preemie clothes...the newborn stuff is still big on her.

Dr. Kaempf is back now after being down here in Salem's NICU for 2 weeks. His goal is to try and get Lauren weened down off the high flow oxygen to low flow oxygen which she can come home on. He wants to get her home in about 2 weeks. YAY!! He cut her oxygen flow down from 3 liters/min to 2.5 yesterday and she seemed to do alright with the change. She still has big fluctuations with her oxygen saturations often, but is hanging around room air (21%) for the percent of oxygen.

He also decided to take the feeding tube out of her nose since he feels she is taking from a bottle well. They were using the feeding tube about every other feeding, but he wants to try and use the bottle all the time now. If she doesn't finish all of her feeding from getting too tired, they can re-insert the tube (from her mouth to stomach) and give her the rest that way. She also is getting 1.5ounces every 3 hours now.

As you can tell Lauren definitely has some chubby cheeks and a cute little double chin!

No Transfer...Yet

We found out today that Lauren will not be transferred to Salem...yet anyway. She had her eye exam this morning and her right eye stayed the same at Stage 1 Retinopathy of Prematurity, but her left eye has moved on to early stage 2 ROP. The eye doctor wants to do weekly checks from now on to make sure it does not progress. The doctor said that if we were determined to have her in Salem she would support us and have her moved. After much thought and deliberation by Adam & I, we figured it would be best to leave Lauren at St. V's for now. Salem is able to check her eyes for more ROP, but they use a camera and then have to send the images to a doctor at OHSU, so getting results takes a bit longer. St. V's has an eye doctor that actually does the exam at the bedside, therefore having immediate results. If Lauren's left eye continues to progress to stage 3 ROP, she will probably need laser treatment and that would be done at St. V's. So if we moved her to Salem now, she could potentially be right back at St. V's for treatment. Our plan is to see what next Tuesday's eye exam shows and if it has not worsened, we will see if St. V's will still pay for the transfer to Salem. We are bummed about her not being moved now, but are keeping in mind what is best for our daughter.

Lauren is still on the high flow oxygen and is still quite sensitive when overstimulated. Most preemies that are 36 weeks are on low flow oxygen by now, so we are hopeful that Lauren's respiratory status will improve fairly soon. The nurses and doctors are always telling us to look at how far she has come for being born at 25 weeks. She is doing well, but again, it's hard having your child go through this. She has not had an infection and they say she has pretty much hit all the bumps in the road they expect for an ex-25 weeker. The PDA ligation, ROP, lung disease--all expected.

Lauren weighed in at 4lbs 10oz last night! She is taking almost every other feeding by a bottle. It depends on how awake she is.

I (Jami) am hitting a wall I think. I want so badly for her to improve and be able to come home. I want to take care of my child. I want to hold her without having her hooked up to all sorts of monitors. I want to feed her without a tube in her nose. I want to see her napping on Adam's chest as he naps too. I want to be the one to bathe her all the time. I want to be the one to always comfort her when she cries. I want to change all her messy diapers. I'm exhausted and I don't even have her home yet. The stress of having her in the NICU for 11 weeks as of tomorrow is finally really starting to hit me. I can't wait until the day she is able to come home with us. I am so thankful for having Adam be so supportive. He constantly reminds me that she will be okay and will come home when she is ready.

The top picture is from last week and I forgot to post it then. After she got put back to bed, she put her little hands together and fell fast asleep. It was too cute to not get a picture of. :)

Like a Weed

Just wanted to let everyone know that Lauren is 4lbs 7oz! She is growing like a weed now. She is looking bigger, but her neighbor who is the same gestational age as her is 6 1/2 lbs and looks huge, so it put things back into perspective for me.

She also took her first FULL bottle for me today! All 38ml's of it...which is a little over an ounce. She had taken almost all of the bottle before this one and the Nurse & I thought she would be too tired to try and take another, but she woke up and was very fussy so we tried it and she took it all like a champ! When I called tonight, she had taken her first night shift feeding from the bottle too! So that is 4 bottle feedings in a row for her. She is really picking up the bottle feedings! They did move the feeding tube from her mouth to her nose so that she could bottle feed easier. When she is able to take all her feedings orally, she can get that darn tube out!

She still surprises me with her strength. I was holding her to burp her after her feeding and she didn't like the way I had positioned her head and she just picked it up and turned it the other way.

The doctor and I talked in person today which was nice. Usually the doc's round in the early morning so we miss them and only talk to them on the phone. Today we talked a lot about her respiratory status and how important it will be for her to try and avoid infections this first year of her life. Because she was born so early and her lungs were not fully developed, she will be at a greater risk for getting pneumonia if she gets sick. It will be very important for us to make sure any visitors don't have any beginnings of colds. No sore throats, runny noses, etc and hand washing before touching her will be a must for everyone. He said if she ends up getting sick and it progresses to pneumonia, she very well may end up in a pediatric ICU and we by no means want that. Adam & I will need to always get our flu vaccines and we will need to make sure any other kiddos she is around a lot have them too.

I keep forgetting to mention that Lauren has an umbilical hernia. Not too uncommon for a low birth weight preemie. Hopefully it will resolve on its own as she gets older, so she won't have to have surgery.

Keep your finger's crossed for her not needing any treatment for her eyes so we can get her transferred to Salem!!! Eye exam is Tuesday...

Rapidly Gaining!

Lauren has reached a whopping 4lbs 5oz tonight! The Nurse said she weighed her twice to make sure the scale was right and she got the same weight both times. She doesn't look like she is retaining any more fluid so we will take it as her real weight.

She still has her ups and downs with her oxygen level decreasing, but has not had any apnea (not breathing for more than 20 seconds) for a while now. She is still on high flow oxygen and doing well with it. It's really hard to tell when she will be able to come off of it and go to low flow oxygen...only time will tell.

Lauren has been moved from her isolette to a little crib now! As I said in the previous post, she had been holding her temperature well and it was time for her to move to a crib. The noise really didn't seem to make a difference in how many times she sets off her alarms...maybe she's growing out of the sensitivity to sound. The isolette that Lauren was in was brand new to the unit and cost $30,000 each. I'm sure that's the most expensive bed she is going to have...EVER!

The latest on her transfer to Salem's NICU is that St. V's has agreed to pay for the transfer as a courtesy to us. Can you believe that?!?!? How amazing! I don't even want to know the cost of it, YIKES! We are going to wait until she has her next eye exam, which is Tuesday, to make the decision. If her eye exam is the same or she does not need any treatment we may move her to Salem. We want to make sure that she will be able to tolerate the transfer with no big set backs or anything. We are very happy that some of the same doctor's would be taking care of Lauren if we do move her. I can't even begin to tell you how impressed I am with all of the doctor's. This whole experience has given me a new appreciation for NICU doctor's & nurses. They are amazing!

We've got Lauren's room almost finished and I will post a couple pictures when it's all done. I can't wait for her to be home and in her room!