Friday, August 29, 2008

Back on Canula...

Danielle is doing great! This afternoon they put her back on regular nasal canula oxygen at 0.5 liters. She has been between 22-26% oxygen today! This is just great. She is getting still just over an ounce of food every 3 hours and loving it. She is weighing in at just over 4 pounds 6 ounces! They are keeping the total volume of food she is getting around that 1 ounce mark, they will up it occasionally as her weight increases, but they upped the amount of calories she is getting per feeding to 27 k/cal breast milk w/ fortifier.

She had another eye exam this week and her eyes are not any worse than they were the previous week. If anything they are just a bit better. We are praying that this continues in the right direction. She will be re-checked again next week.

Here are some pics after her bath this morning. As you can see she has a scalp IV. This really looks way worse than it is. Her arm IV site came out this morning and her other arm had been a previous site just a few days before so that left the scalp open for a site. Hopefully her medication will be done Sunday/Monday so than can come out. It was challenging trying to wash her hair on the side of her head opposite the IV! But she continues to absolutely LOVE her baths, she just relaxes and doesn't cry. If anything just whimpers in the beginning.

This cute outfit she has on we got from our friends the 'LeConte' family in Wisconsin. We met them while Dylan was at the University, as their little boy was also a preemie. Dylan and Drew were roommates in Bay 1 and Bay 2 both. They also have a new baby girl, full-term! But Danielle is wearing her own preemie outfits now and this is the first one she has worn!

We just keep on believing in Danielle, believing in the lord and believing in Miracles.~

Tuesday, August 26, 2008

4 pounds!!!!!!

Our little girl is getting bigger and bigger! She is now just over 4 pounds. We are just thrilled that she is growing so well and loving her food. She has had a good week.
Just after I updated the blog on Sunday night we got a phone call from the hospital. This was alarming at 10pm at night.....the nurse had seen some drainage coming out of Danielle's right ear. She got the doctor to come in and take a look and, she has a middle ear infection, and, her ear drum had ruptured. This just broke our hearts, especially since we had been there all afternoon and didn't notice anything. And normally we notice EVERYTHING! They did labs to check for signs of other infections and everything came back fine. So they started her on 2 broad spectrum medications thru an IV in her arm. They will do this course for 7-10 days, they have not completely decided how long yet. One doctor told me he had a hard time believing the ear drum ruptured because the ear canal is so small that it is very hard to tell and just because she had drainage does not necessarily mean a rupture....but that is really neither here nor there now, it won't change the protocol for her at this time. If it did indeed rupture, it will heal over, probably already has, just like a scratch on our skin.
She has not acted fussy or like she is in pain. I am thinking that she is like Dylan, very resilient! Our poor kids going thru this. If we could make it so neither of them has to endure any pain the rest of their lives we sure would, as I know any parent would. They are tough little cookies that is for sure. So Danielle is doing good. They probably won't take her off Vapotherm until after her medication course is completed.
Lord, please protect our children. Please keep them safe, happy, healthy and free from harm, every day of their life.~

Sunday, August 24, 2008

Great weekend....

Danielle had such a good weekend. She is weighing in at 3 pounds 13 ounces now! She is loving her food, eating every bite!!

Today was our 6 year wedding Anniversary. The nurse made a really nice picture for us with Danielle's hand print...very cute! We were able to spend the whole afternoon at the hospital together, it was great especially since we have not been able to spend time there together since she was born. Brad was able to cuddle with Danielle for one of her feedings and I cuddled with her for the other. It was great!

So a nice relaxing weekend for our little girl. She is being such a tough little cookie and growing stronger and stronger every day.~

Friday, August 22, 2008

Big Girl...8 weeks old today!!

Danielle's new isolet, it is a lot smaller than the newborn isolet because she is keeping her own body temperature now! No cover except for a recieving blanket on top, the shades on the window are open to get her use to day/night cycling.

Danielle has had a great week. She is weighing in at 3 pounds 11.6 ounces as of last night! She is growing great and really starting to fill out more and more each day we see her. She is eating still just over an ounce of food and loving it! She has been sucking on her pacifier more and more during feedings, which is great because they will try and begin to slowly bottle feed her in a few weeks.
On Tuesday they switched Danielle over to 0.3 liter regular flow nasal canula oxygen. This was a great step as they were beginning to wean Danielle off so she may not even go home on oxygen. 0.5 liter oxygen is what Dylan came home on so for her to be on this at just 7 1/2 weeks old and 3 pounds is amazing! She was only requiring between 21-30% oxygen/air blend which was also, great! On Thursday morning she was moved into a new clean room in a different hallway away from the baby's she was next to that were in isolation. I went up Thursday morning to give her a bath and help move her to her new room. During the bath the nurse decided to have us take the oxygen completely off her face and give her a break because she was doing so well. So the bath went great and I carried her in a warming blanket to her new room after her bath. Once we got her into her new bed to get her dressed we plugged her oximeter and she was sating 96% after being off oxygen completely for 20 minutes!! So we started her feeding and I held her and it was 45 minutes total before we had to put her back on the canula! This was amazing!!!!!
Well this morning when I was at work I got an un-nerving phone call from the nurse. The first time I have received a scary phone call. Danielle had been having quite a few brady spells where she drops her heart rate and she was dropping her O2's pretty low also, like to the single digits.....this is scary considering her limits should be 84-96. She was coming back up on her own but it was taking her some time and a few times she needed a little stimulation. So they decided to put her back on the higher flow nasal canula oxygen at 2 litre's which she just had come off of. This is okay, after all she is still doing great and this is not a step backwards. So it has now been 12 hours since they put her back on Vapotherm and she has been at 21% oxygen, room air, all day long and sating anywhere from 80's to 100%. Even the doctor said this is just a little more flow for her to have a little break and she will be back to regular canula oxygen in 2-7 days. Just precautionary so she doesn't get pooped out, which is fine with us. They did a CBC also to make sure she didn't show any signs of infection, and no sign's of infection at all, numbers were great!
So we are very happy with Danielle, she is getting to be such a big girl! It is hard to believe that she is already 8 weeks old, time is flying by. She has come so far these past 8 weeks, we couldn't be more proud of her. It is hard for me to imagine what it would be like if I was 32 weeks pregnant right now...I try not to think of that very often because it is a little depressing knowing we will never be to that point in a pregnancy. But what we do know is that we have two beautiful miracle babies that we are very lucky to have with us, and they are fighters.....boy are they fighters! Prayers are getting us thru these times when our baby is not home with us. We pray she continues to breathe good, eat all of her food and goes potty and everything else will be just fine. We will be united at home all together as a family soon...very soon!~

Monday, August 18, 2008

Fantastic Monday...

Danielle had a terrific weekend! She is now weighing in at 3 pounds 4.6 ounces! She was so good that on Saturday and Sunday nights both she was on room air (21% oxygen) all night! She is now getting 1 ounce of food every 3 hours and loving every bite! She is smiling big smiles now, so big that her mouth opens wide and it is almost as if a 'coo' could come out, it is precious! Here are a few pics of daddy kangarooing with her last night and after her bath. We pray that she continues on this pace.~

Thursday, August 14, 2008

3 pounds....YAY!

Danielle is now just over 3 pounds....yay! We are so excited that she is growing strong. She is being such a good girl and doing great.
Danielle is now being held at every feeding. When we can't be there for feedings the nurses hold her. This is very nice for us to know she is getting the one on one attention during her feeds and it is comforting also because she has still been in the bad habit of pulling out her feeding tube while feedings are going. This is very scary and dangerous so with her being held hopefully it limits the times or prevents it from happening...she is a stinker! The second picture of her being held is with her being held by the Developmental Therapist. She works with all preemies and develops developmental care plans every 2 weeks for babies in the NICU. In the picture she wanted to hold Danielle and feel her posture while being held, swaddled and then un-swaddled. She develops her care plan off of her observation. She was encouraged by Danielle's movements and posture. There are a few new things in her care plan we will work on, such as positioning, counting sucks when she has her pacifier in her mouth, bicycling her legs in and out to work on mid-range motion etc. We really like the care plan and we are very adamant about the nurses following this care plan also, it is our daily goal for them to follow and we post those goals in her room!
Also Danielle has been switched into a new isolet. She is now virtually keeping her own body temperature so they moved her into a smaller isolet. This isolet only heats up to 27 degrees Celcius, her body temp is 36.5 degrees celcius so she is keeping her temp difference up on her own!! This is exciting news! The next step is a crib, she needs to be at 1800 grams before she can be in a crib and she is about 500 grams away from that.
So no new other changes to report. We pray continuously that she keeps growing, going potty and breathing good......all at a nice easy pace.~

Tuesday, August 12, 2008

2 pounds 14 ounces!

Nothing much new with Danielle, other than she is growing and growing! We are so proud of our little girl. She is such a little fighter, just like her brother. She is moving along at an easy pace. She is almost up to 1 ounce of food every 3 hours. She has several times been at room air (21%) for her oxygen. When she gets to this point the nurses have to turn off her high oxygen saturation alarms because with her at 21% room air they can't turn her down any more and the nurses pager goes off every time the alarm sounds. This is a good thing! So she has been anywhere from room air to 28% for her oxygen settings. She is still on the Nasal Canula (Vapotherm) oxygen and doing great.

We have been working on trying to get Danielle to be positioned on her back for developmental and head shaping reasons. She tolerates it about half the time. Well today the nurse was able to have Danielle on her back for 1 hour and during a feeding, this was great news. But, when the nurse went in to check on Danielle after being out of the room for less than 10 minutes, Danielle had flipped onto her side and uncovered herself a little out of the blanket. The nurse was cracking up laughing and so were we wondering how she did this!! There were no other nurses who had been in her room, she did this all on her own. She is a little Houdini!!

We just continue to pray for our little girl that she continues on this pace. Not a day goes by that we don't realize how lucky we are to have both of our kids here with us. We have learned a very valuable life lesson, never take today for granted, none of us are guaranteed a tomorrow...hug your loved ones tight and always kiss them goodnight.~

Saturday, August 9, 2008

Moving along at a steady pace....

No new changes for Miss Danielle! She is doing great and weighing in at 2 pounds 9 ounces today! Here are some pics I took today after her bath.~

Wednesday, August 6, 2008

No changes....a good thing!

She even smiles now!!

Danielle is having a good week. There are no real changes to report! She is eating just under 1 ounce of food still. Her hemoglobin went up so she is not getting transfused and they did up the amount of iron she is getting orally every day. She is loving the canula oxygen. The first 36 hours she was on the verge of them putting her back on CPAP, but now she is doing great. We think she is getting use to it and we can tell that by her breath rate and the deeper breaths she is taking. She is still requiring between 29-34% oxygen which is good and she is having a very small amount of apnec and brady spells.

She is still in contact isolation, her culture last week was negative so if she has 2 negative cultures 1 week apart she can come out of isolation. Well unfortunately the culture from yesterday was positive so isolation for now and they will re-check her again next week.

I gave her a bath over my lunch today and she loved it! Yes, I am back to work full time. It is going pretty good. Just getting use to being up and busy during the day, and doing busy work that doesn't pertain to family. So I am up at the hospital at 6am before I go to work and over my lunch and daddy spends the evenings at the hospital. This routine is working well. At least the kids are getting good amounts of sleep because mommy and daddy are lacking some! But that is okay, we are getting an okay amount of sleep and we are feeling like we are trying to balance things and it's going pretty good.
So our prayers remain the same, that the kids stay healthy and Danielle continues at this easy pace.~