2 pounds 7 ounces!!

Just relaxin' and growin'!!

No more CPAP!!

Our little Danielle is being such a little rock star! We are so proud of her. She is now on just regular Vapotherm oxygen with a nasal canula! This is basically just oxygen with a little more flow, but not much. This is what she had been briefly tried on about 3 weeks ago. She in on 2 liters and only requiring between 26-29% oxygen! This is just so amazing and we are praying like crazy that she continues to do well. This change was made this morning, after they had gone down from 5-4 on her CPAP yesterday she had been only requiring 25% oxygen consistently, so the doc decided that it was time for the canula oxygen. We even took a picture of the monitor in her room with her saturation's because we are just so proud of her. And it is so nice to be able to see her whole cute little face!

Daddy got to Kangaroo again today. It is always just such a great experience to be able to hold your baby and they both loved it. He held her for her feeding which is what they recommend we do whenever possible. She acted a little too comfortable after about 1 1/2 hours of him holding so they decided to put her back in bed. By a little too comfortable I mean that she had a full belly from her food and she was not taking that deep of breaths and requiring a little more oxygen. But after they put her back her oxygen was able to be turned back down as she started taking deeper breaths.

So that is about it, some pretty big changes for our little girl. This is definitely the direction we like to go in, at a slow easy pace. We pray that she does not have to go back on CPAP and that she continues to breathe good, eat all of her food and go potty! We have been so blessed with a precious baby girl and we thank god for our beautiful children each and every day.~

First bath in the tub...

Danielle had the great experience today of having her first bath in the tub!!! This was very fun for Mommy too because I got to bathe her. She loved it! I will tell you though it was challenging. Mostly because she decided to poop two times during the bath so that definitely prolonged the experience. We had to clean the tub and change the water two times before we got the actual bath finished. She didn't even make a peep, she was just looking around and up at me. I didn't know how she would react to my voice, since I had a mask on I didn't know if my voice would sound different to her and I was worried it wouldn't be as calming. But it was such a great time and I am very happy that I was part of the experience. Here are a few pictures.

Also before the bath we switched her bed out to a new clean one. The same type of isolet but she should be getting a new bed every 2 weeks. So it really made us feel good that she was nice and clean after a bath and had a nice clean new bed to lay in after the bath.

No other changes have been made this week. She is still very close to coming off the CPAP but right now they are just going to leave her on it and rethink it next week. They just don't want to push her too much, which is fine with us also. We are so happy she is on CPAP!! She is still up to full feedings, no IV's or anything. Her hemoglobin came back up so right now she does not need another transfusion. She is getting just over 1/2 ounce of food every 3 hours. She is still weighing in at just over 2 pounds.

So that is about all of the update for now. Just a steady, easy pace and that is what we like. When you are the parent of a preemie you don't want a lot of excitement going on, so this pace is fine with us and she is doing great! We keep praying for many, many more days, weeks like this.~

2 Pounds...YAY!

PICC line they took out of Danielle. The white package next to it is a very small infant bandaid, so you can see how very small in comparison the PICC line is.

Our little Danielle is growing, she is up to 2 pounds 1 ounce today! This is very encouraging and means she is getting great nutrition. She is now up to full feedings and today they were able to take out her PICC line! Now she has no IV's or anything, just the CPAP mask on her little face, thats it! The even better part of this is that there are no 'sites' in her for a risk of infection. We are so happy about this because the IV is where her last infection came from. Here is a picture of the PICC line they took out. It is creepy looking, not at all what I had pictured. So to remind you, this PICC line went in at her ankle and went all the way up her leg and the side of her body to her heart. Now this PICC line is as thin as a paper clip and is flimsy like thread. And fluid went thru it, it is so thin it is hard to believe that fluid went thru it. Crazy..... and good thing it is out!!

They are not going to make any changes with her CPAP right now, maybe toward the end of the week. Her hemoglobin levels are border line so instead of transfusing her right now they are giving her iron thru her feeding tube in hopes it will boost up the hemoglobin a little so she doesn't need transfused. They are also not drawing any labs on her for the next day or so to save some of that 'blood' inside her. This is fine with us because like the doctors we don't want too many changes for her at one time and we are just so happy she is on CPAP!

So that is about it. We just pray she keeps breathing good, eating all of her food and going potty, everything else will be just fine!~

Family night celebrating 1 month old today...

Our little Danielle is one month old today. I feel like we keep saying this, but time really has just flown by. Danielle is a little bigger and is more mature that is for sure. Just her movements, her awake time, her reactions and a few other things we observe we can tell how much more mature she is.

She has had a good week. Her infection numbers are back within the normal range. A urine culture they took on Sunday showed today a slight urinary tract infection. So the 2 broad spectrum antibiotics she was on, one of them does not treat the strain of the UTI she has. So they stopped that certain antibiotic and added another one. The reason is because the 2 medications together kill the bacteria better than just the one. So it is a good thing that the medications were started on Monday, and it offers an explanation as to why her infection number climbed up higher before it went down. The other infection from the IV site they do weekly cultures until it shows to be completely gone, her culture from Tuesday showed still positive.

She is still on a CPAP of 5, the reason being is because with an infection they do not want to make too many changes at 1 time. She is now able to be between 24-36% oxygen. So when this 3 day course of antibiotics are gone they would like to take the CPAP down to 4 next week or possibly put her just right onto nasal canula oxygen. It will really depend on how the weekend goes and the doctor making the decision. But she is doing great on CPAP. Her poor little nose is so ouchy though, unfortunately the more they suction it out the more ouchy it gets, but if she is d-sating and not coming back up as she usually does that is what they need to do. They are putting bactraban in her nose to help with bacteria, and they are using saline drops also. We still use saline drops on Dylan 2 times every day to help with germs and moisture, it has really helped him out so much so it can only be helping her also.

Danielle is so close to full feeds and we are so happy. This is really great progress. Full feeds meaning that she is getting the maximum amount of breast milk in a 24 hour period that she can get for her gestation and weight. This means they do not need to supplement with any additional IV's thru her PICC line or a PIV. But they need to keep the PICC line in until her antibiotics are gone and they have to keep something running thru the PICC to keep it open. So she is getting such a small amt of NVN nutrition to keep it open which is why she is not up to full feeds today. But when the medication is gone on Monday they can take out the PICC line and she will just be getting mommy's milk every day all day and nothing else, no other fluid thru IV's or anything!!!

The biggest news of today is that daddy was able to Kangaroo his little girl for the very first time!!!! This was such a wonderful and emotional experience. We decided at the last minute to take Dylan up to meet his little sister for this first time experience also. Even though Danielle is still in contact isolation we got permission to bring him up to see her and watch Daddy hold the baby. It was a precious experience, Dylan was such a good little boy. He quietly looked at her and mostly was not interested until daddy was holding her, then 1 time he tried to touch her and I quickly pulled him away. But he laid on the bench and played with his toys quietly. Neither of us could believe it. It is like he knew to be quiet and entertain himself. It was amazing and it was nice to have our whole family together for the very first time!!! The nurses who had Dylan when he was there saw him and were amazed. The nurse who transferred him to the University was there and it was emotional for her to see him now, she was very happy to see him looking so great!

So tonight was a great night and Danielle is doing good. She is being such a fighter and a sweet little girl. We pray for more moments like this in the future, our family together as 1 and everyone happy and healthy.~

We just have to keep believing...

This first picture is Dylan at 3 months old

This second picture is Danielle today at just over 3 weeks old!

Sucking her thumb for the first time where we actually think she put it there for a reason, not just by mistake!

Brad and I have been talking recently about how we need to keep believing... believing in our daughter, believing in our son and believing in each other. It is just so important each and every day of our lives. We speak positively to our children, we speak life to them at difficult and stressful times and we will continue to believe in them.
Danielle continues to spend each day at an easy pace, we just keep telling her we believe in her! She had a good weekend. She is still doing great on CPAP. With 2 chest x-rays this weekend they decided not to take her CPAP down to a rate of 4 but to leave her at a rate of 5. This is perfectly fine with us and the doctors agree that we want to keep her where she is doing great and not push her too much. Her x-rays were good, but with a bit of haziness it is best to leave her where she is right now. She is requiring anywhere from 26-37% oxygen depending on her body position. She is a very positional baby. Recently, within the past 2 days, one nurse discovered a comfortable way for Danielle to be able to be positioned on her back. This is great because previously she did not like that position. To be on her back is great for head shaping and good for her developmentally also as her head is in the mid line position.
Last Wednesday Danielle had an IV in her arm that went bad during a blood transfusion. So they restarted another IV and continued with the transfusion. The next day the nurse noticed that her previous IV site showed a little streaking and had a little puss coming out of the poke spot. So the doctor ordered a culture of the drainage. On Saturday the culture grew and she has a slight infection. She was not started on antibiotics right away because they just wanted to watch her CRP and CBC. Over 2 days the CBC gradually went up and the CRP (left shift) went up as well. Today it only went up a minimal amount from yesterday but because it went up again, they have started her on 2 broad spectrum antibiotics. She is also in 'contact isolation' meaning that to be in her room, we as well as health care providers have to wear a gown, mask and gloves. It is sure disappointing that she has an infection, especially from an IV site, but being in a hospital environment it is inevitable, unfortunately. So we are just praying that this goes away soon and she stays healthy.
Danielle is doing great with her feedings. She is still getting 9ml's every 3 hours but they are now adding even more fortifier and additional protein and something else. ( I don't remember what, opps!) But she is loving her food!
Today we gave her a bath and she loved it. We had the CPAP off for a bit and her sats were still 97%, this was impressive! I was able to snap a few quick pics of her whole face! You can still see her NG (feeding tube) in her nose but it is a perfect shot of her cute little face. Her poor nose is smushed from the CPAP prongs and her little Nair's look so ouchy. But way better than being on the vent and her nose will heal when she is off CPAP and onto nasal canula oxygen. Dylan's nose was the same at one time and healed just fine. So here is a pic of Danielle from today and a pic from Dylan when he was on CPAP and we gave him a break so we could snap a whole face picture. They look so much alike, it is amazing, especially since Dylan was older in this pic of him. But there is definitely a strong sibling resemblance!
So our reminder for ourselves is to keep believing. It makes us feel so much better when we speak life to our children. We know it helps them to know that we believe in them and this ultimately helps them to be even bigger little fighters! We believe in Danielle and her strength and we believe in miracles. This is what gets us thru each and every day.~

3 weeks old today...

Little miss Danielle is 3 weeks old today, and my oh my has time gone by. It seems like the days, surprisingly enough go by fast, and before we know it, it is the weekend and she is one week older! She is doing great on CPAP and only requiring between 24-34% oxygen. This is a minimal amt for her. They have a chest x-ray scheduled for tomorrow morning and if it is good then they will possibly lower her CPAP rate down to 4 from where it is now at 5. Then if she does good at this setting for the weekend they will possibly consider taking her off CPAP and on to just regular oxygen thru a nasal canula on Monday. This is just amazing that they are considering this. We of course realize a lot can change between now and then but for them to be thinking this is just so positive.

She is getting just over 8ml's of breast milk every 3 hours and tolerating her feeds well. Today they started to add fortifier to her milk so she is getting more calories than the breast milk alone has. This is standard protocol and they will over time, gradually increase the amount of fortifier she is getting as well.

They are still trying to figure out the sodium, amount of fluid she needs, kidney issue. Now they are thinking her body is producing an increased amount of this SIADH (?) or diuretic hormone that reacts to water in the body. So today they stopped the dopamine and have lowered her overall fluid amount back down to within a normal range and will monitor this over 12/24 hours. This is confusing to me because they are thinking something new frequently. What we hope is that without the dopamine she will still pee good amounts despite the lower total body fluid amount and her potassium and sodium levels will stay within the 'normal' range.

We are just so thankful that we have our daughter here with us. She is truly a blessing from God as all children are. We are very lucky to have her for our daughter! We pray for a steady weekend.~

Here are some pics from her room, the 'whole' room view!