That's what little sisters are for....

Davis decorated Rory with stickers today....

Good thing for Rory he didn't have as many as the last time....

Trick or Treat...Yo Gabba Gabba Style!

Here is a picture of the whole Yo Gabba Gabba gang....

(For those of you without tiny people in your household,

Yo Gabba Gabba is a popular preschool kids show)

From Left: Jordyn, Rory, Davis, Maley, Ashley (Jordyn's cousin), Makay,

Lexis and Stephanie (Jordyn' cousin)

DJ Lance Rock!!!

Baby Foofa!!!

Lexis as Muno and Davis as DJ Lance Rock :-)

Davis LOVES suckers!

New pictures...

The Rory Report

Rory is doing much better! She is actually taking the bottle (THANK GOODNESS!!!) She is still very slow but she is learning. I have had several questions about why she went on formula and not donated milk....It is not MY milk that her system is rejecting, it is the protein in breast milk that she cannot process. The formula she is on now is designed for babies with special needs (Davis was on the same formula after being hospitalized at 2 months old.) Their systems have been through so much trauma that they do not work properly. It is all part of the recovery process and hopefully, like Davis, she will have no problems after her first year.

For me the hardest part about this whole transition was the fact that she was crying because she was hungry and I could not feed her... That's hard for a mom to sit and watch. Now that she is taking the bottle we are finally getting a little bit back to normal around the house... I can even hold her again without making her upset!

Thank you so much for your prayers for Rory!

(Davis is a great big brother)

Tough week

So a lot has happened over the last week...

On Wednesday Rory had more blood in her diaper so her pediatrician advised us to go into the ER so several tests. They took blood, xrays and ran a upper and lower GI live xray. She was such a trooper and smiled at all the doctors but left with bruises on her arms from the needles and broken blood vessels in her eyes and on her scalp from crying so hard.

The conclusion was that Rory's immune system is attacking an allergen in the milk...almost like a poison oak reaction on the inside of her body. It seemed like a simple fix of switching her over to a hypoallergenic/protein sensitive formula...

After 13 hours of refusing food Rory began to become lethargic. Every time we tried the bottle she would scream and gag and finally shut down all together. Doctors were concerned about dehydration and even discussed a feeding tube so finally we began using a syringe to shoot milk to the back of her throat and she would have to swallow it. This went on for about 2 days.

Finally after a lot of crying (both her and me) she began taking a bottle. I am still not able to hold her much or feed her because she gets upset. She is having to learn a new skill so her feedings are slow and she still gets frustrated but we are making progress. It feels a bit like I have a newborn again.

So far her discomfort seems to be gone and she has not had any bleeding. She is also resting better and longer! I think she was in a lot more pain than she let us know about...she is a tough little cookie!

Thank you for your prayers!!

Update

We are still waiting for results to come back on the tests but Rory is doing much better. Ever since I (drastically) changed my diet she has not been having problems. I am not eating anything with dairy or any type of soy (just for fun check a food label...it probably has one of these in it!) The doctors think she might have a protein sensitivity (the same type of problem Davis had.) We will keep working with the doctors to make sure we are on the right track but I am so pleased with her progress already!

Thank you for your prayers!!!

Prayer request...

Hi everyone,
I want to ask for your prayers for Rory. She had blood in diaper yesterday so we had to take her to the doctor. They took xrays and are running tests to try to figure out the problem. Until we can figure out the cause I am on a no dairy and no soy diet just in case Rory has a protein sensitivity. There are a lot of possibilities of what the problem could be so we are checking everything. I am reporting in to the doctor each day with an update until we figure things out. Hopefully it is a simple solution!

Thank you for your prayers for Rory!!

I will post an update as soon as we have answers or more info.

We have come a long way...

We have come SO far with both kids!!!

Here is a BEFORE and an AFTER picture of Rory just to show you how far we have come in a short time...

Rory is now 2 months old and weighs 9lbs and 11oz....her birth weight was 5lbs 9oz! She smiles all the time which we all love :-)

Here is a BEFORE picture of Davis and a few current pictures of him now. It is a good reminder of just how blessed we are....


He looks just like his Dad!...except for the red hair :-)

Sheriff Woody...

The day we let him dress himself....



Thank you so much for all your prayers and support!!!

6 weeks old

Rory is doing better than the doctors ever dreamed!!! We had our appointment with the surgeons and she has been completely cleared. Also we went for her weekly weigh in with her pediatrician yesterday and she is up to 8lbs 3oz....she gained 10oz in one week!!! She is up almost 3 pounds since she was born!

Thank you for your prayers!

Our little blue-eyed baby...

4 weeks old

On Tuesday, August 16th (Rory's original due date) we went into the pediatrician for Rory's weekly weigh-in... Rory is up to 7 pounds 1 ounce!

She turned 4 weeks old on Wednesday :-)

3 weeks old

Rory is 3 weeks old and up to 6 pounds 9 ounces!

She is doing really great at home
...Thank you for praying for her!!!

HOME!!!!

We went into the NICU bright and early yesterday morning like normal and the doctor came up and said that since Rory was eating so well on her own that she was going home!!!

Davis was released one day short of 3 weeks and Rory was released TWO days short of 3 weeks...she beat him by ONE day!!!!!

We go into the pediatrician today for her first of many follow up appointments and we have an appointment with the surgeons for a follow up in 2 weeks.

Rory got to wear her first outfit yesterday, ride in the car and even got a big kiss from Davis! It was a fun day! I will post pictures soon :-)

The average NICU stay for gastroschisis babies is 6 weeks and a lot of kids stay a lot longer...all your prayers have worked!!!

The weekend progress

It was a busy and eventful weekend for Rory!

The surgeons and the neonatal doctors were in conflict on how to proceed with Rory's care. The surgeons did not want to move up on her milk intake and the doctors did. Since they could not agree the doctors suggested that we try nursing and see how Rory does. The surgeons agreed thinking that she would not take more than the 25 to 30ml they had approved... After this morning's 8 o'clock feeding of almost 80ml the surgeons finally caved and said she could have as much as she wanted :-) Since she is now eating as much as she wants she was able to come off her pic line as well!!!

It was a great weekend for her and because of her incredible progress the doctors are discussing her going home sometime early this week!

Thank you for your prayers, they are definitely working!

25ml

Moved up to 25ml today!

Moving up!

The doctors just moved her up to 20ml of milk every 3 hours! We started at 5ml and have slowly moved up since she is tolerating it well!

Thank you for your prayers, they are working!!!

Eating again!

Rory got to start eating again today!

Her first feeding was at 4:30 this evening and so far so good. We are starting at 5ml again and will see if she can tolerate it and then hopefully move forward. Please pray that she can tolerate the milk!!! This time around she is actively taking the bottle which is huge progress since a few days ago. She has been acting very hungry lately so it is really great news that she can beginning eating again! It will make her cramp and be uncomfortable for a while until her system really figures out how to process so please pray for her on that issue as well.

Overall we are so pleased with her progress and we are just trying to be patient. Thank you for your prayers!

Saturday

Today was pretty mellow over all.

We are still taking a break from feedings and letting Rory rest, hopefully we can start back up tomorrow. She had a good day and did not throw up at all which is a good sign she might be ready to eat. She is definitely acting hungry and she is now taking her binkie which will help when we get to start feeding her again.

Thank you for your prayers!

Friday

Rory is taking a break from eating for about 3 days and then we will try again. Since she got so sick last night the doctors (and I) don't want to push her too hard too fast. We will give her a few days and then try again. Until then we are trying to get her to learn to suck on her binkie so she can do better with the bottle when she starts feeding again.

The doctors ran some tests on her kidneys today because things looked a little off but so far the tests are coming up okay. They will continue to watch for red flags just to be sure.

Other than that it was a pretty mellow day. She cramps up quite a bit since things are moving through her system so we spend most of the day rocking her and keeping a hot pack on her little tummy.

Thank you for your prayers!

Thursday Update

Today was a good and bad day.

Rory started eating today, starting at 5ml of breast milk every 3 hours. She took 3 feeds and did well and on the 4th feed she threw up to the point of choking on her own vomit. I felt so bad for her but she seemed much more comfortable afterwards. We will let her determine her feeding schedule through the night and re-evaluate in the morning.

Also she really struggled with knowing how to feed...she would not suck so we had to let the milk drip into her mouth and then she would swallow it. Each feeding was such a small amount that we just measured out 5ml with a syringe and then put in into a bottle nipple (no bottle attached). Please pray that she can figure out the technique soon so she can move forward with her feedings...we really don't want to have to use a feeding tube!

Another positive thing that happened today is that she graduated up to a "big girl bed" :-)...there are a few pictures below.

If you could also please pray for the other families here at the NICU I would appreciate it. Today was a bit of a rough day up here...a baby died today in the pod next to ours. Also we are now sharing a pod with another gastroschisis baby that has been here for over 3 months. Thank you again for your prayers, we need them and appreciate them!!!

Prayer request...

Rory might get to start eating tomorrow so if you could please pray that she can tolerate the feeds I would REALLY appreciate it!!! (When she does finally get to start eating we will most likely start with about 5ml and go from there.)

I will keep you posted!

Photo therapy & other news...

Rory had to start photo therapy for jaundice on Tuesday. Hopefully she will respond well to the treatment and her levels will drop quickly so she can come off the lights. She doesn't seem to mind too much but it makes it difficult to hold her.

The great news from yesterday is that they removed the tube from her nose that was draining her stomach. The tube was so large that she was constantly gagging and extremely uncomfortable. As soon as it came out we saw a major drop in her resting heart rate which was nice to see. She did throw up small amounts twice yesterday after the tube was removed but overall she seems to be handling it well.

Her PIC line (the line that goes through her arm to her heart) was beginning to come out a bit so they had to redo the entry location dressing. They had to put her arm in a little wrist restraint and she was not a happy camper but they got the line securely placed which is a good thing.

As of now her main discomfort is due to hunger pains and gas/tummy pains. We can help her with her tummy pains by putting a little heating pack on her stomach but I am VERY anxious to be able to finally feed her so she won't be in so much discomfort from being hungry. It is so hard to know your baby is hungry and not be able to feed her!

Thank you for your prayers!!!

Pictures!

Holding on to her binkie :)

The whole family!

Her cheeks are so red from the tubes being taped to her face

and then being removed so many times.

Rory's first echo

Cuddling up to Dad

Davis cruising around the hospital!

(He is saying "cheese" for the camera)