Friday, October 31, 2008

Happy Halloween....

'Mom get this silly hat off me'!
Much better, pretty girl!

Happy Halloween birthday, Great Aunt Ellie!!!

Snuggle time w/ daddy!

Daddy's little girl!

Checking out his little sister..

Big yawns...

She loves her fingers!!

Now some people have asked us if the kids look alike, here is a good comparison. Here is a pic of Dylan in the bath just a few weeks after he came home and here is a picture of Danielle in the bath tub for the first time at home last weekend. We think they look pretty much identical!


& Dylan....

Danielle is celebrating a bunch of things today, her first week home, her first Halloween and turning 4 months old this week! Danielle's first week home has been so much fun and so relaxing for her. She is such a different baby then when she was in the hospital. She is happier, she is having much more awake time and she is eating a lot better too. We would say she is thriving at home that is for sure, we remember the same thing with Dylan also. She is sleeping wonderfully at night, allowing us anywhere from 5-7 hours of sleep which is very nice for everyone! She is eating great and being a very good girl. She takes a few naps thru the day and otherwise just loves to lay in her boppy, her swing and her bouncy seat and watch her mobile or mommy sing to her while I am getting my work done.

I have noticed though that I think she may have a bit of reflux. I had a few nurses suggest this to us starting back when Danielle was at St. Lukes. She does not cry in between feedings but while she is eating when her bottle is about 1/2 gone. The other day she spit up with every feeding. Yesterday she didn't spit up at all but she was having some 'wet burps' then swallowing them and I could tell at times she was uncomfortable even though she was not fussy. So I talked to Dr. Collins and on Monday I am taking her in for an Upper GI, this will test to see if she does have reflux. I hate to put her through another test, but this will tell a lot and then if necessary she can be put on a small dose of medication and be more comfortable. I also think this is why she was not eating for every nurse while in the hospital. I feed her smaller amounts more frequently during the day and .....wa la....she is eating even more then her daily minimum. Funny how that works. I think because the nurses didn't spend the time with her like we are able to. We have taken out the NG tube last Sunday and have not had to use it.....thank goodness! She is eating great.
Our in home nurse came 2 times this week and we took her to be checked out by her Pediatrician also. Great Report from everyone all the way around! The in home nurse yesterday weighed Danielle and she weighs 9 pounds 8 ounces....big girl! Next Thursday we take Danielle back to Iowa City for an eye exam and a NICU High Risk Followup.
Danielle and Dylan are getting more and more acquainted every day. Dylan isn't too interested in her. If anything he will come over and squeeze her feet. I tried to get him to hold her the other night for a picture and he pushed her right off of his lap, I am thinking this is a good thing. Once in awhile he will give her a push in the swing, we say 'nice push' and he does it very soft. We don't feel like he feels left out at all, we think he is adjusting very well. The baby is the first thing he asks for every morning and every night when I pick him up from daycare. This use to be puppy and now it is Danielle, it is pretty cute. He is still looking at her really funny though when she cries....I have to get a picture of his face because it is hilarious. Brad and I just crack up every time he makes this certain face!
Here are a few pictures of Danielle's first week home. We are LOVING every minute of her here and it is so great to have our family united at home. Everything is WAY less stressful and everyone can relax in the evenings and enjoy each other without running out of the house right away to get up to the hospital. And a good nights rest is doing us all good.~

Friday, October 24, 2008

120 days in the NICU and home today...YAY!!!!!!!

Danielle's discharge doctor!!!!! He told us he appreciated what 'hands on' parents we were! That made us feel good!

Physical Therapist Kathi, she worked with both of our kids during their stay and is WONDERFUL!!! Demonstrating her favorite position for Danielle to gain head and muscle strength.

Big yawns, both kids slept on the way home w/ daddy in the back seat of the car!!

Big kisses for his little sister, Dylan refers to Danielle as 'baby'!

All snuggled for an afternoon nap in the bouncy seat!

Danielle is now at her home and loving life with mommy, daddy, big brother Dylan and puppy Skylar!!!
We got the great news this week that as long as Danielle was eating good for mommy's sleepover on Wednesday that she would be able to come home today and home we are!!!
Danielle is now weighing in at just over 9 pounds 2 ounces! She is eating 3 ounces of breast milk every 4 hours w/ formula added for extra calories and loving it! Now because I seem to be the only one that she will consistently take all of her bottle for every time we did need to learn how to do the NG tube feedings at home in case she starts not eating all of her bottles. This was a little nerve wrecking, but it is super easy, Brad and I are both comfortable doing this if we need to resort to that. It is very nice they let us learn this so we could take her home and they 'trust' us that we will maximize her potential to get her all of her calories during the day! We once again did come home on oxygen, which is perfectly fine. We are using the same Respiratory Therapist that Dylan had and he is awesome and super nice! He notified us when he came to do setup that because of Dylan and the length of time he was on oxygen they learned a few new things and got some new equipment to make things easier for parents. So now we get these benefits. We can now refill our own portable oxygen tanks at home vs. having to pick up several from St. Lukes Home Care every week, this is SO much more convenient. We also have a tank of liquid oxygen here as a stationary unit, looks pretty much like a keg of beer, this will last for 1 month which is very nice also. Danielle did get her settings lowered down to .5 liter which is what Dylan came home on also. They did a room air test to see how long she would last off oxygen before she de-sated. She did great, 18 minutes before her sats dropped to 88. This is so encouraging and a sign that the oxygen will not be around for too long. We know she is on it mostly for her eyes anyway but good to know the strength of those little lungs!
She had a great eye exam on Wednesday with her new eye doctor which is Dylan's also. He okay'd her to come home and be rechecked in 2 weeks at his clinic in Iowa City and for her settings to be dropped down! This was very encouraging and we pray that things continue to go great with her eyes.
Danielle will have a few follow-up checkups these next few weeks in Iowa City. She will followup with the NICU doctor in 2 weeks the same day as her eye exam. Just routine. Then she will meet with Neurosurgery for her 6 week post op checkup, at this time she will also have an MRI done to make sure the shunt settings are where they want them and that too much fluid isn't draining. Because of the MRI Neurosurgery will then have to use the magnet and reset her shunt setting.
She will have a recheck on the hearing screen. Because of the oxygen at 1 liter, there was too much noise when they did the screen so they will re-check. Then she will also have a hip ultrasound. This is something that St. Lukes does not do but the University does and it is in their clinical guidelines and is standard protocol for them to get a hip ultrasound on ALL babies born breech or thru c-section regardless if they were born there or transferred there after birth. This is to check hip placement because sometimes the hips can pop out of alignment during a breech birth or c-section. This is definitely a difference between hospitals and we are completely fine with this being precautionary checked.
We also have the same in home nurse that Dylan had. She will come 2-3 times per week to check Danielle out and get her current weight. This is SO nice for a piece of mind!
We will also have our own Physical Therapist who will come into our home 1-2 times per week and work with Danielle. We are excited about this also!
So Brad and I were talking about the little rundown of our past 2 years:
8.7 months or 261 days spent in the NICU with 2 little miracles
Average of 783 trips to the hospital
Brad & I both trying to manage with me being on 9 weeks of bed rest w/ a 2 yr old!
Learning more about medical equipment, medication, surgeries, Neonatologist, ARNP and
other specialists than we ever thought we could ever know!
Learning what Otolaryongology is
We have cried tears of the unknown, tears of sadness and tears of joy and happiness
Changing our lifestyle for the best interest of our children :)
And the best part is, now having both of our miracle babies home with us so we can snuggle them whenever we want to, protect them, teach them and watch them grow 24/7!!! The lord has blessed our family in so many ways, there is not one thing that we take for granted. Thank you lord for our miracle babies and reuniting us as one family together in our home. We are very fortunate.~

Sunday, October 19, 2008

Lower settings!!!

Favorite sleeping position, very sleepy after her bath :)

On Friday they decided it was okay to take Danielle's oxygen settings down. She is now on 1 liter nasal canula oxygen, which is what she could come home on. We are hoping they will take her down to 0.5 liter eventually because that is what she had been on before, but we are really happy that she is now on regular oxygen. She is doing great. Yesterday she was a little sleepy, we are thinking because of the change in lower oxygen settings, it is perfectly understandable because she is getting quite a bit less support.

They are also now feeding Danielle 3 ounces of breast milk every 4 hours. This change from 3 to 4 hours was made because she really wasn't to, to, hungry at the end of 3 hours. So now she gets her feedings spaced out a bit and she is eating more. This seems to be working good. Friday night I spent the night with her and she took 2 full feedings for me thru a bottle and ate the whole thing. The other 2 feedings she took just over 1/2 thru the bottle. She just seems to eat so much better for me and the few nurses who have had her several times, meaning at least 1-2 times per week. We are really feeling this is because of the continuity. She of course knows who Brad and I are, but with these other nurses doing the same routine with her, it helps her out so much. So, the doctor informed me today that we do need to be there for more feedings if at all possible during the week and continue on the weekends being there all of the time. This means....closer to home!

It was great being able to spend the night with my baby. She slept much better this sleepover compared to our last! She slept great in between her feedings and was just a little squirmy the closer it got to her being fed. The whole experience just really makes us feel like we can be 100% hands on and do all of her care ourselves. This is great because during the week when we are working we unfortunately do not get this experience because unfortunately our time is limited.

She is still just on the edge of 9 pounds, almost there!! We keep praying and believing in our little girl. We love you baby Danielle.~

Thursday, October 16, 2008

Baby girl, strong and big....

Still loving the Zaky 'hands', very comforting for Danielle when we can't be there to hold her.

Daddy calls both kids his little monkey's, so this outfit is very appropriate!
Danielle is now 8 pounds 14 ounces. She is just almost 9 pounds and getting so big! She is now wearing newborn to size 3 month outfits, she is just cruising thru these sizes which is great!

Today she had an eye exam. Today's exam looked better and like the ROP may be 'regressing' a little bit. She does not really need an exam for 2 weeks, her current eye doctor will be gone next week. But Dylan's current eye doctor, the one who literally saved his eyes, will be covering next week the NICU patients. Because of this I have requested that Danielle have an eye exam next week by him, Dr. Olson. We really really like the quality of care he gives, Danielle will be followed by him once discharged but while an inpatient she has to see this other doctor. So it will be great to get almost like an 'second opinion' from Dr. Olson next week about Danielle's eyes. We are very happy that things are going in the positive direction.

So because of this eye exam today we are waiting to see if they will go down on her settings tomorrow. It will really depend on how the eye doctor wrote the results of her exam and what the NICU docs think. We are hoping for the best!!

Danielle is doing pretty good with her bottles. A Speech Therapist came up to evaluate her and see if he could offer any suggestions for bottle feeding. This Speech Therapist comes up and evaluates every preemie now either before they start bottle feeding or shortly after. This is a new procedure since Dylans NICU stay. He suggested a different kind of nipple for her bottle, but she doesn't like this new nipple much at all. She also seems to very consistently take all of her morning bottles for her mommy. This baffles the nurses and docs, but I am thinking she just either knows her mommy and the way I feed her and its consistent, or she is just telling them that she wants to come home!! So they are offering the bottle every time now for feedings. She also does much better for nurses who have had her consistently, which is completely understandable. I use the original nipple and most nurses do also, the new nipple isn't working much. But she is doing great and eating 1/2 to full feedings every time out of a bottle.

We are going to possibly have a Family Care Conference next week with the current Staff NICU doctor and team to discuss Danielle and discharge. We are hoping that this is a great conference and that she will be home soon. As of now, no date or time frame has been given. But as with Dylan we are expecting a very short notice when we find out we get to bring Danielle home.

We just keep praying and believing that our little girl will be home soon, happy and healthy as ever! We've just gotta keep believing.~

Saturday, October 11, 2008

Today was mommy's due date....40 weeks gestation

Oh mommy.....please snuggle with me!

Danielle's full out ticked off face...

Today was Mommy's due date, October 11th! And Danielle is such a champ and 8 pounds 8 ounces today, just what she would have been born at!!! We try to imagine what it would have been like for me to deliver an 8 pound baby girl today, crazy! She is being such a sweet baby and doing everything we want her to do and more. Today is also special because Daddy fed Danielle his first bottle today, and changed Danielle's diaper for the first time!! She is taking full bottles regularly now, still sometimes taking only half a feeding but still doing great. She is getting the bottle whenever she is awake at feeding time. She could very well have one for every single feeding but if she is sleeping they figure, why wake her.
Danielle had a good eye exam this week. No changes and her eyes look a bit better. Still no oxygen setting changes right now though, it is still just best to keep her settings the same and she will have another eye exam next week. Just a little disappointing because we really want her home, but we know this is best for her and she is doing great and her eyes are stable, so no complaints here.
Neurosurgery came up earlier in the week and changed her shunt setting up a tiny bit higher, they change the setting with a magnet. Just a little 'fine tuning'. There was concern that it may now be draining too much now, but its not, everything is just fine. Depending on which position she is laying in depends on how sunken her fontanel is, (her soft spot). So if she is upright in the boppy her fontanel will appear to be more sunken and her shunt will drain more than if she is laying in the crib with the mattress just slightly elevated.
So that is about it, our little girl is just growing and growing so much every day. The ARNP told me today that every day her exam is perfect, perfect, perfect! She is just doing great and we are waiting for those oxygen settings to come down so she can come home soon! We pray lord that Danielle's eyes continue to be better every week and that she stays healthy and growing strong. I wish you would have been born today baby girl, but God had a plan for us and for us to see you sooner than was supposed to be. Your a miracle sweetie! Mommy, Daddy, Dalton & Dylan love you very much. Keep fighting with all of your might baby girl, you will be home very soon. We are so, so proud of you darling :) ~