December 21, 2009

First day of winter and we are all still doing well. Rachel is growing by leaps and bounds and sort of getting on a schedule....just not one that Rob and I are used to! The last weigh-in she was 7 pounds 15 1/2 ounces!! a 1/2 and she will be 8pounds! Who would have thought we'd get this big......Yeah!!! She is still on the O2, but the doctor did drop her back down to 1/4 liter....we go back Jan 7 to see if she will still need it or what the next step is.

She will be on the apnea monitor for a little longer even if she is not on O2. We are also waiting for the twins to arrive....any day now.....we can't wait! What a Christmas this will be!

Here are some new picture......sorry the posts are so far between now, it's hard to keep up with it with her being home......But we promise to post pictures from Christmas.

Love Rob and Jenny

12-18-2009

December 5 update

Sorry we haven't posted in a while, who knew taking care of a baby would be so much work! Rachel has been home for about 2.5 weeks now and is getting used to mommy and daddy taking care of her. She has 3 doctors that she sees for regular appointments: her pediatrician, a retina specialist eye doctor, and her respiratory doctor.
At her last doctor visit weigh in this past wednesday she was up to 7 lbs 6 oz. The respiratory doctor bumped her up to a 1/2 liter of oxygen from 1/4 because it seems like she's still working hard to breathe. The eye doctor said she has a stage 2 retinopothy of prematurity, which means her eyes are still developing. They don't seem too concerned yet, but have bumped her up to weekly visits to monitor the progress.

Other than that, Rachel is adjusting to home life very well. She eats every 2.5-3hours, does not like taking baths, does not like her diaper being changed, does not like changing outfits, and LOVES being on her tummy either on the floor or laying on one of our chests. She has quite a bit of gas (as milk is very gassy) so we've added some Mylicon to her bottles and it seems to be helping. We both are longing for the day when she will sleep more than 3 hours at a time.

We've posted some pics from the past few weeks so you can see how she's growing, as well as some of her new outfits. Enjoy!
Love Rob and Jen

Rachel's first xmas prep

Thanksgiving

Homecoming at last!

The big day that we've been waiting for 111 days has finally come....Rachel is now home!! We picked her up at the hospital around 9am Sunday and after all the last minute instructions, consulting with her Neonatalogist, signing paperwork we were able to give Rachel her first breath of outside fresh air.

She is still on 1/4 liter of oxygen, so we have a home machine that is on all the time, with spare travel tanks for when we have to drive her to the doctor appointments. Her doctor expects that she will be on oxygen for another 6-10 weeks. Her pediatrician will decide when its time to start weaning her off. She's also on 26mg of caffene per day, which we have to give her with a little bit of milk (and it tastes BAD). We had some initial trouble ordering it but they sent us home with enough dosage to make it through Monday and we'll pick up the perscription today. To put it in perspective, a can of coke has 2mg of caffene so you'd have to have 13 cans of coke to equal her dosage. WOW! We'll also have to get her weaned off of that probably around the time she starts going without the oxygen machine.

Enjoy the pics and thank you for all your thoughts and prayers for Rachel,
Rob and Jen

Weekend of Nov 14 pictures

Homecoming day!!

Less than a week to go!

Rachel is now 2860 grams as of her weigh-in last night, which is about 6 lbs 5oz. She's had a few apnea events the last couple days which has delayed her coming home schedule. The doctors have upped her oxygen to 1/4 liter and she seems to be doing better. They've also stopped her caffene to prep her for coming home. At this point they are thinking possibly late this week, Thursday-Saturday timeframe to release her, but that is still subject to breathing events. She's taking 55ml of milk at her feeds which are still every 3 hours, and they've put 22 calories in each feed. Probably around Wednesday they will give her the car seat test to make sure she doesn't have any events in it for at least an hour.

Enjoy this pics from tonights feeding, she feels like a regular sized baby now!

Love Rob and Jen

11-8-2009

1st Halloween!

Although she's still in the hospital, the NICU nurses like to dress the babies up for halloween. So Rachel's first costume was a fairy!

She is still progressing well, there's a possibility she might be home as early as this sunday (11/8) which would be a week before her original due date. We are going into overdrive this week preparing her room. The nurses say that she is taking her feeds well and earlier today she got through a whole bottle without 1 breathing event. Rob fed her a whole bottle of 48ml this evening. Although she was fussy at times, she also opened her eyes nice and wide and stared to greet her daddy back from his trip. She gets weighed again tonight, hopefully she'll have broken the 5.5lb barrier! Enjoy the pics!

11-1-2009

10-31-09

10/27/09

Today was a good day for Rachel. She is over 5 lbs now and growing every day. They did remove the feeding tube for a little over a day last week, but she got tuckered out so now she gets a bottle every other feeding unless she is up and moving around they will try to give it to her.

They had to loosen her cannula a little bit because her cheeks are geting so chubby....that's not a bad thing though! She was also moved down to 1/8 from 1/4 liter on the O2. Next step is room air if she handles the 1/8 well. So far so good. Fingers are crossed.

Love Jenny

Weekend Pictures

After getting weighed on Friday night Rachel is now 5 lbs 1oz. She'll get weighed again tonight so here's to more ounces! She's taking 27 calories at her feedings, and they put her feeding tube back in to help her intake without having to work so hard with a bottle all the time. Head scan and hearing test this week were all normal, only thing left to pass is the eye test which comes again this week.

Enjoy this pics, we'll post more tomorrow!

Rob

10-23-09

10-24-2009

10/19/09

Here are some new pic of Rachel. She is now up to 41cc's per feeding and is back down to 27 calories.....she is gaining enough at a good rate so they pulled back on the calorie. She is back on caffeine because she was having events so they decided that she still needed the extra boost.

She also had her second head scan and it was normal so no more of those. Still a waiting game on when she can come home, but she is growing and doing well...Still the diva of the NICU Special Care Nursery though! Just the way she likes it.

Enjoy the pics.

Love Jenny and Rob

10-19-2009

Happy Birthday to Rob!

Here are some pictures from last night at the hospital, Rachel celebrating my birthday and taking another bottle....this time she had about 7mL of the 37mL bottle. She was 1976 grams when they weighed her overnight (10/15), which is 4.3lbs, she's definitely getting big with her chubby cheeks and double chins. We'll ask how many inches long she is tonight, but she almost fills out one of the hospital's preemie outfits that she was in! We'll have more pictures to post later tonight from the feeding, here are last night's.

Love
Rob

10-16-2009

Weekend Pics

I got to hold Rachel on Friday night and then on Sunday they let me try bottle feeding for the first time. After some quick instructions we were off! It was so nice, she is up to 35ml on her feedings and she took 5ml through the bottle which they said was really good for the first time. Even though it was only 5 it felt like 30 because I held her for at least 20 minutes. I had to keep her at a 45 degree angle to feed and your arm tires out fast! She still has her feeding tube in her nose so after they put her back down they gave her the rest through that. But she was awake for the feeding, opened both her eyes and was looking all around at the sights. We got to use the boppy pillow from the shower to help balance her, so that came in handy! After her weigh in on Saturday night they said she is 3 lbs 14oz, so almost to 4lbs!

And the other good news is...she is out of her incubator! They temperature in her incubator was at 27 degrees C for a few days, which is pretty close to room temperature so the doctor said let's try her in an open crib and see how she does. If she can maintain her temp and still gain weight then she will stay out for good!

Jenny will write more later, enjoy the pics!

Love
Rob

10-9-09

10-11-2009

10/8/09

Rachel is doing well....the doctor took her off diuretics and sodium . Yea!! She is no longer retaining fluid or getting fluid in her lungs! she is still breathing on her own - her canula level is now 1/4 liter and 100% O2.....usually this is what babies are on when they go home if they have to go home on O2. So she is ahead of the game there!

She is now up to an ounce, well actually 31cc's at each feeding! And she is 3 pounds 7 ounces....shes gaining!

Yeah Rachel!!!

10/4/09

Here are some pictures from today....it was bath night and I was able to give it. It was just a sponge bath because she is still in her incubator, but it was still awesome!! She is not a big fan of them....or maybe it's just cause it was my first time. She is has been on nasel canula since 9am this morning and has been doing fantastic!! Very high stats on her oxygen level, 95%+. Her feeding tube is now down her nose as well.....makes it harder to pull out, which she did often and makes it easier to suck her paci.

10-4-2009

This link is from Friday...Daddy time.

10-2-09

Here's to a great night and more weight gain!!!

Love Jenny and Rob

9/30/09

Rachel had a busy day today. She got a blood transfusion because her blood count was low and that really helped her so it was a good thing. SHe had her second eye exam and she is better then where she was 2 weeks ago. Her blood vessels are growing and grew a little from 2 weeks ago. It's a step in the right direction but they are still a to immature to really see if there is an issue.

The doctor is not concerned so she will be looked at again in 2 weeks. If there was a cause for concern it would have been in a week.

She will be weighed again tonight so hopefully there is another weight gain.

9/28/09

Rachel is 2 monthes today! Woo Hoo!! Here are some new pics. the first link is from Friday when Rob was holding her during canula time and the second link is from yesterday...the Michigan hat isn't a dress anymore and Rob's ring only fits 3 fingers now not her hand!!

9-25-09

9-27-2009

9/27/09

Rachel is 3 pounds! 3 Pounds!!!!!!!!!!!!!! Woo hoo!!!! She has also been able to test the nasel canulas...O2 up her nose where she does the breathing.....she is able to test that everyday for 2 hours......we can hold during that time or she can stay in the bed.

9/23/09

Well today was a wonderful day for Rachel. She is almost 3 pounds and is eating 25cc's at each feeding. She is also allowed to be off the cpap for 2 hours at a time right now. They watch her to make sure that she does not destat too much and that her O2 isn't too high.

Yesterday was the first day she was able to do it and it was only while I was holding her, not while in her bed. She only lasted about an hour. Today I held for an hour and they were allowing her to stay on it while just laying in her bed.

Heres to a nice restful evening and another wonderful day!!

Thank you all!!

Sunday was amazing, the amount of presents that you all gave us at the shower for Rachel really left me speechless. And special thanks to both Mom and Dad, Leah, Chrissy and Busia for all the work and time you put in to make it so special. We are truly blessed to have such loving parents and siblings and wonderful caring friends!!

It ended up being 2 car loads and Dad's van load bringing everything back to our house. Everything is in the 'baby staging area' in the basement, waiting for us to finish her room and move upstairs (and for daddy to assemble the furniture). I think she now has more clothes than I do...I have a feeling I'll be fighting to keep my closet in that room!

My dad was the designated photographer so when he sends me pictures, I will upload them to the site. Thanks Dad!

God bless you all,
Rob, Jenny and Rachel

PS - Stopped in to see her today after work, she was doing well, 30.5 C in her incubator and 28 % O2 on the Cpap. She had tongued out her feeding tube when I got there, I told the nurse and she said that was the second time today she'd done that! She gave me 4 big stretches and yawns while I was there and peeked her eyes open for a minute. She was weighed last night and is 2lbs 9.5oz, they're going to up her feedings a bit and change the mixture of powder and add some oil to try and fatten her up a bit. The nurse says they go through about 6oz of milk a day with her.
Jenny will post more tomorrow!

9/20/09

What a great day for Rachel and a busy one for Mommy and Daddy! It was her shower today and boy is she one loved little girl! We have clothes for her until she goes to high school!!!

We love all presents! We can't wait to read all your wishes and hopes for her as well as the bedtimes books we received as well. All the handmade blankets are beautiful and I can't wait to wrap her up in the beautiful quilt that cousin Jamie made her. It's so soft!! We loved the wish book from Aunt Chrissy and Grandma Lou. And alhough Aunt Leah is a State fan she bought Rachel a Michigan sleeper....just for Daddy and a tailgate! And so Rob did not feel left out my mom made a bassinet skirt that is UofM but is pink! I hope she like pink, purple and green!!!

Rachel did have a good day today too. Her cpap level was moved down from 6 to 5. Hopefully she likes the change this time, she was not happy when they tried it last week. She will be weighed tonight so hopefully she gained more!!

Love to all from Rob, Jenny and Rachel

9/17/09

Rachel is doing well.....she is now 2.8 pounds and is still doing well with her feedings. They will be checking her blood count, sodium and calcium levels tomorrow morning.

She had both eyes open today while I was there so that was fun to see. Her eye check yesterday was good. The doctor said that since her eyes are so immature that her next check is in 2 weeks. If it was any sooner then we would have reason to worry. Her blood vessels have a little more growning to do.

Here's to another good night for Miss. Rachel

Jenny

9/14/09

Rachel is doing well. She is no longer the youngest or smallest in the NICU!
She is now 2.7 pounds, but the nurse thinks part of that weight gain could be because they use a new scale.....the babies are on the other side of the NICU for the time being....they started construction on the floor above and the noise would be too much for them.

She is still on cpap, they did try to move her down to level 5 (not as much pressure going into the nose), but she did not like the change so she is back up to 6. It's not a bad thing that she couldn't handle the 5...she just doesn't like change!

She is also the fashionista of the NICU....the nurses love to look through her drawer to see what outfit they are going to put on her....she loves her little cotton sleepers....although they are still way too big on her she fills out the length it's the width we have to work on.

Pictures from 9-11 visit

9-11-2009

Jenny got to hold Rachel today for about 35 minutes or so. Sorry some of the pictures are fuzzy they had the lights turned low so it doesn't hurt her eyes.

Rob

9/10/09

Good Day for Rachel! She rested comfortably all day and did well during her labs. Sodium was low so she will get sodium at each feeding. Her direct bili levels dropped from 4.3 (9/3) to 1.8 today. Blood and platelet counts are good. They were still waiting for her caffeine level when I left tonight.

She will have her eye check next week. And she is getting weighed tonight. If they find that she is not gaining like she should they will move her from 24 calories to 27 calories in her milk.

More updates tomorrow.

9/9/09

Well another good day for Rachel.....Her O2 was between 21%-23% all day. So that's good. Nothing has grown yet for her blood cultures so that is another good thing. She has labs tomorrow morning....they are going to check her sodium, electrolytes and caffeine. If those are good there won't be any changes, if they are low the doctors will talk about changing the levels.

When I left tonight I was able to help change her diaper and put her on her tummy....of course that was after we had mommy/daughter time. I got to hold her today and while I was she opened both eyes and looked towards me when I talked to her. She still can't focus on anything, but knowing she knows my voice makes those big eyes worth looking at!!

hopefully her night is a good one!!

9/8/09

Well Rachel had a good day today. She behaved until I got there and then she started to set off her alarms! They had to change her nose things for cpap and she did not like that one bit!!! So when I got there she was sleeping because she used so much energy kicking and moving her arms and legs while the resperatory therapist was changing....

The doctor did up her caffeine dose again....which is normal. She is just processing it faster as she grows. They will check her sodium, electrolytes and caffeine levels again on Thursday to see how they are.

She is also getting a bath and weighed tonight...so that will be updated tomorrow. Next week she will get her first eye exam to see how her eyes are developing....from what the doctor said it is still likely to early to see if she has anything wrong so the diagnosis will most likely retinas are still immature.

Here's to another good night for Rachel!

Jenny

9/7/09

Rachel had a good day today. She rested comfortably all day and was sleeping when we left this afternoon.

She is still on the dueretic to help keep fluid out of her lungs. No changes to her cpap, or feedings.

Here to another good day for Rachel and my first day back to work....will see who takes it harder!

9/6/09

Rachel had a better day today....still going up and down with her O2 saturation....when I left this afternoon she was at 25% which is not very high.

They did do a chest x-ray and it looked a bit hazy and her lungs did not look as inflated as they did the last x-ray so the doctor did start her on diretix to help get some of the fluid out so she gets that every 12 hours. Because the diretix causes her to go potty more they are also giving her sodium chloride to help with keeping her sodium level and electorlyte levels up. Both are given during her feeds.

Her next sodium check will be Tuesday or Wednesday next week. They are also still waiting for her caffeine level results as well. If it is low they will up her amount that she gets.

She was resting comfortably when I left on her tummy of course! Here's to another good night for Rachel.

9/6/09

Rachel had an okay day yesterday and an okay night. She is going up in her stats on O2 and her heart rate was dropping. There are a few reasons it could be happening...her caffeine level could be low and they may need to up it, she could have an infection or this could just be the after effects of not having the steriods anymore.

They did draw some blood this morning to check the caffeine level and check for an infection. They are not going to start treating her with antibiotics yet, they will be waiting to see if anything grows in the cultures....so now we wait to see if anything does.

She was resting comfortably last night when I left on her tummy of course! When I called this morning her nurse said that she is behaving better now then she was yesterday and last night......I guess a few pokes of the needle and she starts to behave! :)

Hopefully she will have a better day today.....so that I can hold her longer then yesterday......

9/4/09 - Evening

Rachel had a good day today and has been having a good night as well. Her O2 is up to 30 - because she is having some events and not recovering as quick as she was. It's not a bad thing she has the O2....just something to help her.

When I called tonight to say goodnight....she hadn't been weighed yet so we will see what that update is in the morning. She is also getting another new incubator....same thing as she has now just a change to get the other one cleaned.


Here's to another good night and a start to a good day for Rachel

9/4/09

Rachel had a good day yesterday and a good night. She is still on cpap and holding her own on breathing. She is still tolerating her feeds and her little rash is healing!

She did have her first outfit on yesterday.....it was huge, but looked to darn cute!! She no longer has the temperature line on her and the incubator is set at a certain temp and she has been maintaining it pretty well so far. As long as she continues to do that she will have one less line!

I got to hold her again yesterday.....it's now no longer if we can it's when are we going to.....since she is doing pretty well. It's very nice! She really likes that time out of the incubator. It will be hard tho when I am back at work....I won't have the day time visits.....but at least I can call anytime....and I will be there after work and of course there are the weekends.......I'd rather have the time when she comes home.

Here's to another good day!!!

9/2/09

Good day for Rachel today!! She is out of her private room.....and out on the floor. The rooms are more for the preemies that are sick, or need the quiet, dark and more care. She's growing out of that! One more step closer to home!! I think Rob and I are a little more bummed about the room change then she will be....ha ha

She is still on room air and only really needs to be moved up on O2 for her hands on with diaper change and temp check, etc. They were going to move her CPAP down to level 5 pressure (she's on 6 right now), but the doctor decided against it just because she is doing so well right now and they want to give her a little more time to get used to breathing on her own. The steriods were stopped and her picc line is out.

They did have to get some speical cream for her little butt. She has a little bit of a rash....since she was pooping so much and because of the antibiotics it happened. The cream they are putting on her is one that stays on even through diaper changes.

She still loves her tummy time, but is getting a little better on her side and also her back. But tummy time is still the all time fav!

Enjoy the pics!

9-2-2009

9/1/09

Here's to Rachel!! She had a great night and was on 21% O2 for that last 3 hours! Go Rachel!!! She is also 1020 grams.....2.4lbs. She will be able to wear clothes soon....once the temperature probe is removed (the little cord that is held with the cute animals)

Last round of steriods was last night and that means....picc line gets removed!!! Yeah! And this morning is her first bigger dose of caffeine......and she has not had any residuals with her last few feeds....that's a good thing!!

Hoping today is as good as her night!!!

8/31/09 - Evening update

Rachel had a good day today. She did have to get her caffeine dose upped since she is getting bigger and the dose she was getting was from when she was a pound.....her last round of steriods was also held due to her blood pressure being a little high....her blood pressure is high due to the steriods that is a side effect of it. But they will not give it to her until her pressure goes down.

This also means that her picc line removal is being held up, but she's had it this long so what's another day!

I was able to hold her today as well....after her hands on at 3 today I was able to hold her....It was not kangaroo care, just holding....it was nice. She also seems to like the pacifier....which helps her with learning how to suck and it also helps the enzymes in the saliva start going down with the food to help her break down the food (I learned that today while at the hospital)

So all in all, today was a good day. They will be weighing her tonight so that will be updated tomorrow morning.....Here's to tummy time and a restful night for Rachel!

Pictures from 8-29 visit

Here are some pictures from our 8-29 visit with Rachel. I got to do kangaroo care for the first time with her. Enjoy!

8-29-09 Visit

8/30/09

Good day for Rachel today. She was on room air for about an hour today, which means they were not giving her extra O2 while she was breathing....of course that was while she was on her belly....which is her favorite.

Once they moved her to her side/back she was back up on O2......she just does not seem to understand that to not have a flat head she needs to have different positions every so often....she does not like it!!!

She had visitors again today.....Rob's parents came to see her again.....she was pretty well behaved while they were there....not to many ups and downs with her stats....which is always a good thing. She was weighed today and is now 967grams....2.2 pounds. She is also off the antibiotics and the steriods end tomorrow so soon that picc line will be out as well!

She did have a couple events today where she stopped breathing....so the doctor said that they will be checking her caffeine level along with her sugar, sodium, etc that they will do tomorrow. and if it seems low they will up her caffeine dosage. She is certainly our daughter....needs her caffeine!

Love,
Rob and Jenny

8/29/09

Today was a good day for Rachel....she is stil off the vent and is breathing well and is on low settings for O2 and Daddy came home today.

We went up to the hospital today and since it was time for her hands on...I got to take her temp and change her diaper....she has a little bit of a diaper rash....poor thing....but once we finshed all that she got to lay on Rob's chest for kanagroo care.....she also got her 6am feeding while laying there.

It was so sweet...pictures to come...although once the feeding was done, she drooled or had a little spit up on his chest.....that's what happens when she keeps her mouth open!!!

They had daddy/daughter time for about and hour and 15 min. i've never seen Rob so happy. She was as content as could be....I mean how much warmer could she get....a warm blanket, the blanket from her incubator and Rob the human furnace it could not have been any better.

We did get a few more pictures of her holding Rob's ring, but she actually moved her arm and almost threw it! Future softball star maybe?

Pictures are coming........but for now its movie night for Mom and Dad......Night all!

8/29/09

Rachel had a great night last night. She rested comfortably and behaved! There is a first time for everything!!!

She had some visiters yesterday, Great Grandma met her for the first time and her Aunt Chrissy and Uncle Rob came up as well. They changed her bed out - not just the bedding the whole bed and because of that I got to hold her.....it wasn't kangaroo care, she was wrapped up like a burrito and so darn cute!!! She did so well with me holding her.....hopefully daddy can hold her this weekend when he gets home, but that also depends on how she is doing with her breathing.

She is still off the vent and breathing on her own....such a big girl at 2 pounds! :) She no longer needs to have her blood gas checked for the time being so that is great. No longer poked for blood! Yes! I'm sure she is happy about that!! Maybe this will help her stay on the CPAP.....

She is also getting her caffeine orally now....they add it to her milk.....her own kind of latte!! She is now at 24 calories and will stay there for while unless she is not gaining weight fast enough.....I don't think that will be a problem...she's growing and gaining!! Go Rachel Go!

They are going to remove her picc line soon as well.....she is off the antibiotics and that is the only reason they kept it in after she was on CPAP......so she will not have any lines left....the only thing she will be hooked up to are the monitors for heart rate, O2 level, blood pressure, etc. She will still have to be suctioned, but it's not as much as when she was on the vent.

Here's to another good day for Rachel!!!!

Love
Jenny

8/28/09

Rachel is still doing well! When I was there last night She was resting but then decided it was time to party!

She was miving and doing her aerobics.....she decided that the position the nurse was putting her in was not good enough and so she flipped....to her back! Her nurse was therer putting her froggies around her but that didn't matter to her! She also kept lifting her legs to help during her hands on....Jane Fonda anyone?

Her stiches also fell out and her incision looks great....she may have a scar, but it won't be huge.

She had a good night last night as well.....Her O2 percent is the best she has been ever between 22-28%!She is still taking her feeds well.

Here's to another good day!

8/27/09

Rachel is still doing well. Still breathing on her own and still taking the feedings well. Her last dose of sterioids was last night at 2am....and she still gets her caffiene.

SHe had a restful and uneventful night last night so here's to another restful and uneventful day for her!

Here are some new pictures....the first 5 are from Tuesday the first day of cpap....the next 5 are from yesterday....she's still doing well with the cpap, but they had to put a chin strap on her to keep her mouth closed because the O2 will escape through her mouth and it is not supposed to right now.....she hates it!!!

8-26-2009

8/26/09

Well, Miss Rachel decided to do some exercise last night while I was there for a little bit and extubated herself.....meaning she removed her vent tube! A lot of babies do that with movement and stuff, but she decided to try push ups! I'm in trouble when she starts to crawl!

Anyway, she decided she was done with the vent and so the the doctor decided to try the Bubble CPAP since she is such a fiesty fighter right now! What that means is she has a little cap on her head with the tube and little prongs for her nose for oxygen and one of the tubs is in a bottle of water and she breaths against it for pressure....just like the vent does but she is the one that is breathing!! She still gets O2 for help, but she has to breath there is no vent!

Her caffeine was also started again to help stimulate her brain and she will still get steriods as well....So right now she is breathing on her own...it's not guarenteed she will stay off the vent she could get tired and have to go back on the vent. Which is not a bad thing so I am prepared for that but for right now she is doing great! Less events, less alarms and breathing on her own....she's growing up! :)

One thing is for sure, she wants what she wants when she wants it! So lets keep our fingers crossed that she keeps herself off the vent since she is in control of that! And here is to 2 more cc's for her feeds! She is at 13 and today she will be moved to 15 with no IV nutrients or lipids!! YEAH RACHEL!

Jenn

8/25/09

Just left the hospital and Rachel is having a much better day. They said she was rest much more comfortably and is tolerating the hands on from both nurse and doctors.

The doctor who is on today is starting steriods (which she told me it was an option she was thinking of yesterday) to help Rachel with her lungs to get her off the Oclialtor and back to th other vent. She is also going to be off her TPN (the lipids and nutrition she gets through IV) starting tonight! Her feeds will go up to 13cc's as well. They will be giving her clear IV fluid only just to keep the picc line open in case they need it.

She was weighed again today and was 985 grams.....almost 2.3 pounds! Yeah Rachel! They also turned down her Isolette temp because she was kinda warm and being to warm can make her burn calories....and when they took her temp at noon she had maintained her temp....which is a good thing...that's one thing she needs to do in order to come home!!

I was able to change her and also suction out her mouth....they have this thing that reminds me of the dentist suction thing....at least she will be ready for that when the time comes!!! She didn't do so bad when I was doing that so she must trust me!

More updates to come!

Jenny

8/24/09

Well last night and this morning were not so uneventful for Rachel. She kept flucuating on with her stats last night and needed to have a transfusion today. Her blood count was a little low again....she is still on the antibiotics.

She was given some laysix today to help her go potty, she wasn't really going so they tried that. This afternoon she was better, but I think part of it was because they moved her onto her side and then her tummy, she really does not like laying on her back!

They did try to cath her so that they could get a sample to send to the lab to find out if there is something causing the not pottying issue. But when they put the cath in she peed around it and then pooped......she was trying to say, "leave me ALONE!" at least that is what I think....she had enough of the poking and proding today!

She was resting very comfortable when I left this afternoon. The doctor that was there during the day moved her feedings up to 11cc's instead of keeping it 1.5cc's every 24 hours. So tomorrow as long as te 6pm feeding went well today she will get moved up to 13cc's at 6pm tomorrow. She seems to be tolerating the bigger feeds and hopefully she will continue to.

More updates tomorrow.....
Jenny

8/23/09

Rachel is having a good day again today. They did have to turn her up on the Ocilator because it showed some haziness in her lungs that could be due to them not being fully inflated.

While we were there she was on her belly......she does behave so much better!! And her nurse said she did really well when they changed her vent tube! Yeah Rachel! She was also weighed again today and she went down a little, which is normal....she is now 919 grams or just 2 pounds......which is still over her birth weight! The doctor said that her weight will fluctuate for a little bit. She does look a little bigger to us.

She is still getting her feedings and they should have upped it again by 1.5 ml's at her 6pm feeding. We haven't called to get an update yet since we left the hospital. She did open one of her eyes today for a little bit and it was when Rob was sitting by the incubator....it was so cute!!

Here's to another quiet and good night for Miss Rachel!

Love,
Jenny and Rob

8-23-2009

8/22/09

I just got back from visiting Rachel and she had a a good day and was having a good night......SHe was still on her tummy and she does so well on her tummy they leave her on there, just turn her head so her ears don't get folded.

They also increased her feedings to 9ml's at the 6pm feeding. She had some of the
7.5 ml's left in her tummy from her 12pm feeding so they didn't increase it at the 3pm. I did talk to the nurse regarding the feedings and her IV fluids. Her fluids were also increased due to the increase in the feedings. THe nurse said that once she reaches full feedings.....for her age right now her full feedling will be 14ml's or almost 1/2 ounce she will no longer get the fluids....but they will leave her picc line in in case they need to give her something.

She is still on the Oclilator, but doing well and hopefully they can turn down the pressure so we can begin her journey off of that and back to the other vent. But we will take it one day at a time.....they still give her morphine or adavan to help with staying comfy....but it's only as needed every 6hours (4hours for the adavan).

They will also keep treating her with antibiotics for another 6 days (for a total of 10) and that seems to be helping her lungs clear as well....they also have not had her laying on her sides to help keep the lungs inflated while on the Ocilator.

Hopefully tomorrow is another good day.....and here's to another uneventful night!!!

Jenny

8/21/09 - evening update

At today's visit I found out Rachel is now 2 pounds!!! Yeah! Grow Rachel Grow!!!

She also was having a good day and not having a lot of events and her lungs while they are still a little hazy, it is normal it is not showing pneumonia. They are still giving her antibiotics as a precaution because she had something in her trach tube that they weren't sure what it was.

They did up her feeding today again.....she is now getting 7.5ml's and if those go down well she will start getting 9ml's tomorrow beginning at 3pm tomorrow!

Here's hoping for a quiet night and a good start for tomorrow!

Jenny

8/21/09

Rachel has been pretty good the last few days. She is still on the Ocliator, and they do not know how much longer she will be on it, she is the one that is in the drivers seat on this one. She does do better on it, but on the other hand we can't do kangaroo care on this vent. We can still touch her and talk, but since she wiggles and that's how they gauge if she is breathing well or not. And lately she has been having good "wiggles" as the nurses and resperatory therapists say.

She is getting 6ml's of milk now and it gets increase at the 3pm feedings. They increase it by 1.5ml's so hopefully she will continue to take the feedings well and the increases too.

Hopefully we will have more to update after today's visit, but I don't mind the calm of the past few days! Uneventful is good.......

Jenny

8/19/09

Rachel had a decent night last night they turned down her settings a little more on the Ocilator and her doses of morphine. She is still pretty active but it's not causing as many destats as before.

She was weighed today and is now 865 grams.....or 1.14 pounds and they have upped her feeding amount as well....she is now getting 4.5mls every 3 hours and seems to be handling it well. So we will see tomorrow how much they move it up to.

She is also becoming less touchy when they have do their hands on. So she must be getting better and thats a good sign. She still needs her incubator cover, quiet and no excitment because that uses u a lot of her energy and calories that she needs to grow and get well. But her nurse and the doctor think she is doing well and are thnking if the next step.....going back on the other ventilator to continue to help her to remember to breathe. Once she masters that they will put her on CPAP.

The resperatory therapist told me last night that she is trying to breathe over the Ocilator,which they don't want her to, but it is showing she wants to breathe without it.

8/17/09

Today was a better day for Rachel. I didn't go up there until late this afternoon, but she had been having a decent day. Her blood gases were good and her chest x-rays were better each time. The dr would like to her to be a little less active, but says that her activity doesn't hurt anything, but the Ocilator works best when the babies don't move.

She is tolerating the nurses and drs touching her for the hands on a lot better then before so that is also a step in the right direction. She was able to have tummy time too and seems to be much happier and do much better with her O2 during that time.

Her doctor is also going to start bigger feedings starting tomorrow, so hopefully that will go as well as the smaller feedings. They are also going to weigh her tomorrow. They really haven't tried to since before the surgery because she has been so touchy.

Here are the pictures we took on Saturday - She does look a little bigger to me, but doesn't really show much of a different next to the hat.

Enjoy!

Pictures from 8-15 visit

8/16/09

Rachel had a good day yesterday and she had some visitors.....her Aunt Leah and Uncle Mike came to see her for the first time. I think she was a little to excited to have visitors she kept making her alarms go off which kind of freaked them out.....Nice impression Rachel! :)

I did go see her late yesterday and she was having a better evening. They did put her on her tummy and she loves her tummy time so she was behaving a little better that and a little morphine helped. We did take some new pictures, but have to download them, once they are, we will post them

I got a call this morning from her Dr and she had an okay night. She would fall in her stats and take a while to come back up every few hours. So they are now giving her some morphine every 2 hours, they put her on the Ocilator which is another venitlator that helps keep the CO2 levels down and that is what she needs help with. It also gives her the support the dr thinks she needs at less pressure then the other vent.

They did also do a blood culture to see if she might have an infection from the surgery, which is common, and they are starting antibiotics just in case. Now it's just a waiting game of 72 hours to see if there is anything. But Dr Wiener said that she is active and moving (part of the reason for the morphine) and does not show signs of an infection.

She is also getting another transfusion because her blood count was low. And she is not happy with anyone touching her at all. It's sort of a catch 22 - they need to touch her to help her with suctioning, repositioning and all that stuff, but I also think that the less they mess with her the better she might get.

I'm going up to the hospital to see her and just sit at her bed. I won't be able to hold her for a little while longer now due to the new vent. But just sitting there helps keep me calm......and I can talk to her. Not that she really listens to me, but she does know my voice and sometimes that helps calm her when she is misbehaving!

Jenny

8/14/09

Rachel had an okay day today - she was a little uncomfortable while I was there and kept falling in her stats, but once they put her on her tummy and also gave her the medication they started today to help her lungs with the ventilator she started doing better.

Her pressure on the ventilator was turned down from 6 down to 5. Which is a step in the right direction. She did open her eyes for a bit today although it was mainly because the pain medication wore off and she was in pain.......they did give her more, but she was still pretty aggitated and kept moving and kicking. I would be too if people kept bugging me after surgery! Poor thing, but she is recovering and is taking it like a champ! And really the nurses are just trying to keep her comfy and help her out! :)

She will have more visitors tomorrow. Leah and Mike are coming up to visit and meet her for the first time.....I told her she needed to behave for her night nurse tonight and rest so she is happy for tomorrow! Here are some pictures from yesterday's visit - they show her incision from her surgery.

Enjoy -

After surgery pictures

8/13/09

Today was an okay day for Rachel. She was having some of the downs that happen after the surgery. She had to be given some Dopamine because her blood pressure was low and she was not going potty. Her blood gas at 6am was not very good so they upped her O2 for a bit.

Her next blood gas at 9am was better so they turned her down and she had gone to the bathroom. They took her off the Dopamine about 5pm and turned down the pressure of the vent. She did not like being touched today, but really who would after having a surgery! Seems like she took after me in that aspect of personality!

When I left this afternoon, she was resting comfortably and was having her tummy time that she loves so much. She did try to open her eyes while I was there, but when she was doing that she was moving a little too much and caused her some pain so they gave her some morphine.....she did keep a grip on my finger while I had my hand in her incubator.

I did call a few minutes ago and her nurse Geri said that she was not only resting very comfy, but she tolerated her hands on (blood gas test, suctioning, repositioning, etc) and did not fall in her stats or O2!! Woo Hoo! There is a first time for everything....she behaved during hands on!!

It's still a long road, but she is fighting and is doing better since the PDA has been closed so although it was a hard thing to go through (which at least she won't remember, but we will!) it was something that needed to be done.

More updates tomorrow

Love Jenny

8/12/09

Surgery went really well for Rachel....her PDA is now closed!! We saw the xRay and the clip looks good. She did not need a chest tube either.....her vitals are good and she is down to 21% O2 the best she has had in about a week!! Go Rachel Go!

I just called to see how she was doing and she's still resting comfortably!!! They were going to be giving her a little more medication so she doesn't feel pain and continues to rest comfortable. Her incision is not huge, it's about 2 inches long (maybe, I'm not the best at guessing measurments) and underneath her arm.

Although she will be on the vent for a little while still, she was not put on the Ocilator machine so that is s good sign too. They did put in her feeding tube again so feedlings could start as soon as tonight again or tomorrow morning. I don't think she was happy that those stopped!! That's our girl....go for the food!!

thanks everyone for the prayers and happy thoughts for Rachel!!!

Love Rob and Jen

8/11/09 -Evening Updates

We just got back from the hospital and Rachel will have her surgery tomorrow at 7:30am - She will be in good hands. The surgeon is coming from Children's Hospital to take care of her. It's still a little scary for us, but we have talked to the neonatal doc and also the anastheialogist (sorry about the spelling!) who will both be with her through the whole thing and they have done this before so they have answered any questions we have and will answer more if we have any.

They will make sure she is stable and everything prior to doing the surgery. She will have a scar on her back afterwards, but it will be her battle scar to show she made it through the NICU.......she is a fighter so that will also help her get through this as well as prayers.

I did get to hold her today for an hour and 30 minutes.....so that was awesome......she had the best stats during that time too.....although she didn't open her eyes until Daddy got there! Hmmmm could it be she is already a daddy's girl? She held on to Rob's finger and squeezed for at least 5 minutes...and was peeking out of one eye the whole time......it was so sweet!

Will write more tomorrow once we have info on how she is doing and how the surgery went, gotta get up early to get to the hospital by 6:30a!!!

Love,
Jenny and Rob

8/11/09

Last night was an uneventful night for Rachel.....they have been tying to keep he a little sedated so she can est and not move around so much since she does need to rest.

Her echo yesterday showed that the PDA is not getting better so they are working on scheduling her for surgery. They are trying to keep in at St Joe's, but depending on the doctor who will perform it she may have to go to Children's Hospital. But we are still waiting on all the details.

She did open her eyes for a little bit yesterday when I was there. She still will hold onto our fingers when we put our hands in the incubator even when she is sleeping. She also still loves her tummy time and has a preference on how she likes to lay. She shows her personality to the nurses everyday so that helps me get through these rough days......I am hoping today that I can hold her again, but if she is "misbehaving" (what I call her events!) I might not be able to....the movement is a bit stressful fo her even though we do love our kanagaroo care time.

More updates to come........

Jenny

8-9-09 Update

8-9-2009

We just got home from the hospital and seeing Rachel. She had a better day today starting at noon. Her blodd gas was not good at 6am so they did another at 9am it was a little better, but not great. So they did another one at 5 and that was not so good either. Her last one was at 9 while we were still there and it was much better so they are not going to change her ventilator.

They are still giving her stuff to sedate her and make her more comfortable so she was pretty much snoozing while we were there. She had some visitors again, Aunt Chrissy and Uncle Rob came up to see her.

She does have her echo tomorrow to see how the PDA is and then we will know the next step, whether it's wait and see how it does or if there will be surgery. She's still pretty active and fiesty so that is a good sign, but she is going through some tough times with her breathing.......which is normal at least that's what they tell us.....

More updates tomorrow.

Love,
Rob and Jenny

8/8/09

Went to visit Rachel today - it was a better day then yesterday and lots better then Thursday. They did end up changing her tube to a little bit bigger one to help with the air leak.

It did help and she is getting more of her tidal volumes and not falling in her stats like she was Thursday and yesterday. I did get to hold her again today. I have to say that is the best thing ever!! My mom was with me so we got our first 3 generation picture....although you can really only see the top of Rachel's head!

She was resting again today and they gave her a little morphine to help her rest especially after getting the new tube. They are still turning down her humidity and she seems to be handling that well and is still handling the feedings well too.

More updates tomorrow

Love
Jenny

8-8-09 Update

Kangaroo Care again today, enjoy the pictures!

8-8-2009

8/7/09

Well today was a better day for Rachel. She was resting all day and didn't have many events today. Her next Echo is Monday to see if the PDA changed directions. If so she will be scheduled for surgery as soon as late next week.

She did gain 25 grams since Wednesday! Go Rachel!!! She is now 1.8 (and a half) pounds! And she is tolerating the feedings pretty well too so that is also a good sign.

Hopefully there will be more to update tomorrow!

Night!
love
Jenny

8/6/09

Well today was one of those down days for Rachel. She had a transfusion to help lift her red blood count up, again that is normal, but still a little tough to see her little arm wrapped up. They also moved her back up on the ventilator. When we left tonight she was at 60. Basically she is not breathing above the ventilator. Which again is normal. She is still pretty little to be breathing on her own.

Part of the problem could be she has a little air leak with her tube, but they do not want to change her to a bigger tube because it would be too big for her. They did start little feedings today. She will get 1.5ml every 3 hours. It's just to get her tummy ready for bigger feedings. The small ones will be for about 7-10 days.

I did get to hold for a little bit today - just while they were changing her bedding. I'm hoping tomorrow I can hold her a little longer. My parents came up to see her for the first time tonight so that was nice she had some visitors. She was on her tummy again tonight, which she loves. She was more restful laying like that then she was today on her back.

She did open both eyes today, but was pretty much sleeping while we were there tonight, which she needs to be doing!!! Between today and yesterday it's been an emotional roller coaster for me. They told us to expect ups and downs, but being told that and actually seeing it happen is harder then I ever imagined.

I am hoping that tomorrow is a better day for Rachel and that tonight is an uneventful one!

More updates tomorrow.

Love,
Jenny

8/5/09 - update

As Rob said I got to hold Rachel today, it was awesome! She kept peeking at me from her one open eye - hopefully she will have both eyes open tomorrow!

Tonight was so much better then the day that's for sure. She had her echo and while the murmer and PDA is still there it is going the opposite way then they thought. Basically it is going left to right not right to left. Instead of going towards the lungs it is actually taking the blood towards the aorta - so for now no surgery, but they will be checking it again next week

She also kept going down with her vitals today and not breathing on her own - partly due to the whole echo and also the removing of her umbilical cord line. She had a pretty stressful day so that was her way of telling the nurses that she had enough!

I did get to change her diaper and take her temp again twice today - she likes to stick her feet up in the air during the whole diaper change too! Her way of helping I guess.

Tonight was so much better - partly because I got to hold her and partly because she was finally able to rest from everything that happened today. She also had some blood cultures drawn today because her white blood cell count was elevated. They did start some antibiotics just in case, but we probably won't hear anything for up to 72 hours on the results. Better to be safe! She also might have to have another transfusion - but the doctor said if her blood count is better tomorrow she won't have to have it, but if not it will be done tomorrow. They will be starting small feeds tomorrow as well! Hopefully that helps her too! She was weighed and she had lost about 14 grams so she is now 670 - part of the loss could be due to loosing water weight.....the small feeds hopefully will help her gain some pounds!!

She is still as fiesty as ever and I know that is helping her continue to fight!! Like Rob said enjoy the pictures and more updates tomorrow......

Love,
Jenny

Kangaroo Day!

Today was the first day Jenny got to hold Rachel and do Kangaroo care. Earlier in the day they removed the final lines to her umbilical cord so all that is left is the respirator lines and the picc line. They put her on her stomach for the first time today and she liked it! She also peeked and opened one of her eyes today a little bit for the first time!Jenny got to hold her for about 55 minutes or so, her arm went asleep but she loved it. Rachel was so good for the whole time, never had any problems with her breathing or vitals. They put a warm blanket over both mom and baby to keep the temperature high.

Jenny will write more tomorrow, enjoy the pictures

Love
Rob

8-5-2009

8/4/09 updates

Today has been a pretty uneventful day for Rachel. I called to see how her evening was and she had a pretty restful one. I like those calls! Her day today was also pretty restful. I called around lunch time to see how she was doing and she was just resting.......

I was at the hospital for a few hours just sitting with her and she was pretty stable. Tomorrow will be a big day - we see if the Indomethacin worked on the PDA. I keep praying that the second round worked. If it did she will have her other umbilical cord line removed!! Woo hoo! That also means that they will start small feedings with her as well.

I am not going to think about what the next step is if the second round of medicine didn't work. We will cross that bridge when we need to. Right now, happy thoughts and prayers that it did work!!

Depending on how I feel after dinner, I might go back up for a couple hours again, but tomorrow I will be there for the echo and stay after for a few hours so I might just call to see how she is doing. It gets harder and harder to leave after every visit. There are things I don't want to miss - like if she opens her eyes. I want to see that and just sitting there at her isolette is the most calming experience ever!

She is one of the nurses favorites in the NICU - they all like taking care of her and think she is a sweetheart. They also can't get over how much of a fighter she is. They like her fiestiness and her long eyelashes!!

Love,
Jenny and Rob

8/3/09 - Evening update

As promised here are some updated pictures - some are from yesterday's evening visit - and Rachel was squeezing Rob's finger like crazy - it was too cute!!!! She was comforting him I think. 2 are from today when I was there and the ones with the socks and hat (part of her coming home outfit) are from tonight.

The hat is about as big as she is and the little socks are almost as long as her legs! I think we are going to take pictures every couple weeks to see how she is growing. It will be a while for her to grow into the socks and hat....the gown that they match would be a blanket on her now!!!

She had her first visitors today other then Rob and I. Rob's parents came to see her and my mom and dad are going to come either tomorrow or a little later in the week. They want to make sure that she is stable enough and today was such a big day with her scan and the one line being removed. They thought it was better to postpone their visit for a little later in the week.

I was able to change her diaper and take her temperature again today. I'm getting better with the diapers that's for sure.......it's a little different to change a diaper on a preemie then a full term baby! She also lets her nurse know if she is uncomfortable in her position. Her alarms start to go off.....at first it scared me, but usually once they move her, suction her or just move the little froggy things around her she goes back up and the alarms stop! She is learning how to run the show!

All the nurses she has had have been fantastic and they all get so excited when they can be her nurse. I know she is getting the best care possible and the fact that the people taking care of her love their jobs make it a little easier for me to accept that I have to leave her there. I've started a little journal that documents her day, or any questions that I have as well as letters to her that let her know what Rob and I are thinking.......they aren't long, but I figure she can look back on them along with the pictures and see how small she really was.

Enjoy the pictures!!!

Love,
Rob and Jenny

8-3-2009

8/3/09 Updates

I went to visit Rachel today and it was a pretty big day for her. She had her CT scan and it came back normal. She does not have any bleeding in her brain and the fluids surrounding her brain appear to be normal! Yeah that's a good thing. She will have another scan when she is between 28-32 weeks. Which is prett normal. If there was this scan looked weird she would have had another one sooner.

They did remove one of her umbilical cord lines. The one that was giving her some of the nutrients, but those same nutrients will be given through her picc line. They did keep the other line in at least until Wednesday. That is the day she has her next echo to check on the heart murmer. She had her last dose of Indomethacin today at 2, so they are giving it some time to work to see if the whole will close. She has a soft murmer, but the hole is pretty big and that's what is causing concern. We will cross the bridge of surgery if it comes to that.

Wednesday could prove to be a bigger day for her, if the murmer is gone, her other umbilical cord line could be removed, and they will start some small feedings!! And the best part about that whole thing is we can finally hold her!!! Keeping all prayers and thoughts that the 2nd round worked!! I want to hold my daughter!!!

I did get to "cradle" her today during her last dose of medicine. What I got to do is have her head in my left hand and her feet cradled in my right so she was contained my me instead of the little froggy things they use. It was so awesome!! She kept flexing her feet in my hands, but she did stay calm and restful, which is what that is supposed to do. I held her for a good 25 minutes. Lost feeling in my arms, but it was SO worth it. She also took the removal of her line like a champ....she let them do what they needed to and didn't fidget! Of course when they were done she started to, but that's what she does best.

More updates after tonight's visit


Love,
Jenny and Rob

8/1/09 Updates

We just got back from our "good night" visit with Rachel. She was resting comfortably and had a pretty good day. I was there earlier for a couple hours and the biggest thing going on was she kept going up and down with her oxygen level.
They don't like it too high, but it should not fall below 82. She kept fluctuating. It's pretty normal, but all the alarms were a bit much for me! She did gain some weight from Friday. She is now 684 grams or 1.8 pounds. That's a step in the right direction! Once she gets started on small feeds she will hopefully gain more!!

They also did her second echo and the PDA is still there so they started her second round of Indomethacin. She got her first dose at 2pm, she'll get the second at 2am and then the last at 2pm tomorrow. They could do the 3rd echo as soon as Tuesday morning to see if this round worked. If not, the next step is heart surgery to close the hole.

Rob held her hand while we were there and she held on for quite a while, as if to say "Dad, I'm okay and we are going to be just fine". His hand is about the size of her body! Once we download those pictures I will post them, but since Rob is going back to work tomorrow we are calling it an early night. Stay tuned for more updates tomorrow!

Love,
Jenny and Rob

8-1-09 Update

Rachel Update:
She is doing well tonight. We just got back from the hospital and she was sucking on her ventilator tube and sometimes her finger. Her nurse said that is a good sign because she is comforting herself. She took the Indomethacin medication pretty well and they will be doing her second echo tomorrow to see if the first round of 3 doses worked. We will know tomorrow if she will need a second round.

They checked her platlets today and she was down just a little so they ordered a transfusion of platlets for her. It will take about 2 hours for it to be completed. It is pretty normal for that to happen as well, especially for preemies that are getting the Indomethacin.

She still has her Umbilical cord lines - they said that could be a few more days. It's not a bad thing that she has them, since some things that they are giving her cannot go through her picc line. Those lines are just meant to be temporary. Once those are removed we can start the Kangaroo Care. Which is they lay her on either my chest or Rob's and its comnforting for both us and Rachel.

She also had a little bit of a poopy diaper already! That's also a good thing!!! I'm getting pretty good at changing her diaper, but not sure if I'm ready for the poop yet! :)

We'll be going up again tomorrow and will have more updates. Here are some newer pictures. Enjoy!

Love Jenny and Rob

7/31//09 Afternoon Update

We went to see Rachel this afternoon and she was having a good day. It was a busy one for her, but they said she took it like a champ. She got her pick line today and they said that she did very well while they were putting it in.

When we were there to see her the doctor came in and said that they did her first echo, which is a picture of her heart to check for a murmer, which they did detect. It's called a PDA-Patant Ductus Arteriosus. It's a duct that is supposed to be open during the pregnancy and close when the baby is born. It is common in preemies and they are giving her Indomethacin. It is a medication that is supposed to close the duct. She will get the medication in 3 doses every 12 hours and then she will have another echo to see if that worked. If not she will be given another 3 doses.

She has lost about 12% of her weight so she is now about 1.7 pounds (640 grams). That is pretty normal, but the doctor still does not want her to really lose anymore. She is also back under the Bili-light, which is also quite normal.

I was able to check her temperature and change her diaper today so that was pretty exciting for me. I felt like I was doing something. The nurse send that I could possibly do that everytime I visit, I will just have to ask the nurse at the time. Which is something that I have to learn to do - ask. The staff is willing to let us be as involved as we want to be, but it's something that I have to work on.

We did get a call from one of the Doctor's at 7:20pm and while her blood gas test was good and her Sodium is down, her red blood cells are also down so she is now having her first transfusion. We were told that this could happen, but it is still a little hard to take in. She is doing well and is a fighter, but the word transfusion is scary to me. She will have her own unit of blood and won't be given much during the process. We are going to call in about an hour or so to see how the transfusion went. Here are some pictures of our most recent visit. And yes one of the pictures is Rob's Ring on her little foot......just to show how teeny she really is.

Pictures from 7-31 visit

Love,
Rob and Jenny

7/31 update

Last night we went to go see Rachel, she is still doing well. They had to move her ventilator up a little bit back to 40 to help her breathe when they are suctioning her, but they said that is normal and she still is prety low for someone her age. They were not successful with the pick line, but they have someone coming in today to evaluate and they will try again.
When we were leaving I held her hand and she squeezed my finger as if to say "I'm okiay mom, I'm a fighter!" Whether that was a reflex or not it comforted me that she is going to fight to get out of her incubator.

I called this morning and got the update of the night and she had an uneventful night. They said she went down a little again when they suctioned her, but she came back up on her own. They were evaluating her for the 'picc' line and if that is a success her lines in the umbilical cord will come out! That's a step in the right direction. Rob and will be going up to see her a little later today and will probably have more news. Each little success that she has helps me keep fighting as well to get through the not so good days.

Stay tuned - more updates to come!

Jenny

7-30 update

Today was a good day for Rachel. They turned down her ventilator settings again down to 25 and there is talk she might be put on Cpap (up the nose breathing assistance) as early as tomorrow. They took her off the billy light (blue light) and to us her color looks better.

This afternoon they will be putting in a pick line into a leg vein and taking out the line in her umbilical cord lines, which were only meant to stay in a few days. Monday she'll have her first ultrasound to check the brain for any bleeding. Doctors are very upbeat so far! We took a few pictures, check them out!

Pictures 7-30

Rob and I just got home from the hopital. I'm going to take a nap in my OWN BED (Woooo!!!) and then have some REAL FOOD for dinner. We'll go back tonight after dinner and see how she is. We'll post more tomorrow

Jenny

Pics of our new baby

Rachel Irene Brobeil was born at 3:29pm on July 28, 2009. She is approximately 13inches long and weighed 730 grams (1ln 10oz) at birth.

This is a link to some pictures that we took yesterday. Mom and baby are doing well so far!

Birth of Rachel

Pray for us and Rachel
Rob and Jenny