Thursday, July 31, 2008

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.~

Monday, July 28, 2008

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!~

Friday, July 25, 2008

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.~

Monday, July 21, 2008

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.~

Friday, July 18, 2008

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!

Monday, July 14, 2008

Easy does it...

Danielle had a pretty good weekend. On Friday's post I had mentioned the concern that she had been dropping her stats and heart rate during the day. Well we received a phone call in the middle of the night from the doctor that they had to put her back on the vent. He stressed that this was not that big of a deal as her settings were fairly low. They did upon reintibation notice that she had a fairly large secretion in the very back of her airway. Upon suctioning this her stats did improve but they still figured that back on the vent for a period of days would help give her a rest as she had been off it since she was 4 days old. So since last night her setting have gone from where they were to the lowest possible settings on this vent. It is giving her 20 breaths per min. but she is breathing well above that at 50-60, which is making her a bit confused. Because she is trying to over breath it when it kicks in. But they will still leave her on it for another day or so. They did though say that if her tube were to come out they would not put it back in and they would put her back on CPAP instead. The docs are very impressed with her respiratory status regardless of being back on the vent.

She has been handling her feeds well. She is up to 4.8 ml's every 3 hours and is having less than 50% residual or no residual every time. This is her ultimate 'salvation' as one of the doctors says because feedings do so much for these preemies as they do for all of us.

They are still in the process of figuring out the total amount of fluid that she is needing. Her sodium has continued to be low. With some consultation from a doctor at the University of Minnesota it is determined that they need to up her sodium requirements even more. They have also had to up the amount of total fluid she is getting during the day compared to any other preemie comparable to her. She just pee's it out so fast but with a lack of sodium her urine output decreases, which is where they were concerned about the kidneys before and thinking the worst. They seem to be getting it under control. The lack of sodium also is one of the results of her being back on the vent. I don't know how to explain it, but the doctor explained it to me today and it made clear sense. Just a technical issue as he explained it in the short sense.

So overall Danielle is being a trooper and doing good. Here are a few pictures from today. She is opening her eyes always when she is awake and they are closed when she is sleeping. Her foot probably looks big in this up close picture, but it really puts it in perspective how small it really is when you see my wedding ring around it. I thought I would try and see if it would work and it was just unreal when my ring was even bigger than the circumference of her foot. Teeny tiny that is for sure. Anyway, she is breathing good, going potty decent when she has the amount of fluid she needs, and eating all of her food. This is what we pray with her about every day. With all of these things going good it makes her days a lot easier.~

Friday, July 11, 2008

Eyes open today...YAY!

Miss Danielle decided to open her eyes this morning for the very first time! This is so exciting. Today it was so sweet as I would talk to her she would look up at me and follow my movements with her eyes. Just even more of a bonding experience watching her look at us when we talk to her.
She is tolerating her feedings and today they changed her feeds from every 6 hours to every 4. She is having trace to no residuals so we want to keep that going especially as she gets feeds more frequently. Also today the doctor told me he no longer things she is in "renal failure". This is such great news especially because it was so controversial anyway. So we just want her to keep peeing good and today she did just that! They broke me in and I am now changing her diapers regularly. And it is a challenge because she is in the isolet and when she is on her belly you can't flip her over to change her so you have to do it backwards, I forgot what that was like!

Today she was dropping her stats and o2's very often. She would come back up on her own though. It is a little concerning, the doctor this morning though said she will have days like this. It is just making sure the nurses don't overstimulate and crank up her oxygen because it does NOT help her it makes it a lot worse. When I got there this morning that is exactly what was happening because the night nurse had not relayed this information. The nurse was frustrated I told her to trust me and I gave her the run down on Danielle. She was very responding and appreciative. This made for a much better day. This afternoon she was still having the spells but her stats weren't getting quite so low. So hopefully this will slow down and stop soon. I held her for just about 3 hours and even during the Kangarooing it was happening. I could tell every time she was going to drop her heart rate because she would press her feet strongly against my hand that was holding them. So we pray for good stats, that she eats all her food and that everything else continues to go good for her. Father Klein from St. Pius came up and prayed over her and I today and it was such a peaceful feeling, just made me feel even more like everything is going to be okay, God is with us.~

Thursday, July 10, 2008

Food today!

Danielle has to be a happy little girl, she is getting feedings restarted today! Usually when preemies are on dopamine, the medication, they do not like to have feedings going. But they lowered the amt of dopamine she is getting and with this very low dose the doctor felt good about restarting her feeds. So she is getting 1.6 cc's every 6 hours so hopefully she eats it all and she can have more!

This morning she was a little ancy and dropping her o2's a bit, so we repositioned her onto her side and turned her head and got her all tucked in, this worked wonderfully! We turned off all of the lights and closed the door and curtain so it was nice and quiet and she loved it. She was being great and breathing even better. The doctor reiterated to today's nurse again this morning how LOW stimulation she likes and quiet surroundings. I had a long discussion with the doctor and it was very productive. So now hopefully every nurse that has Danielle will be informed even more thorough about what she likes and clearly doesn't like. This will help her so much developmentally also.

I took a few pics of the part of her room where her isolet is so you can see how her bed is covered up. She really likes it too. Nice and dark and quiet!

She got another blood transfusion today, not that big of a deal. But both of her IV's overnight had come out so sadly today they had to put the IV in her head. Dylan had this too and it is horrible to look at because you feel so bad, but it is much better then them poking her arms a ton to try and get a good IV site. So this today was used for the transfusion and then after that was done it is used for Lipids, which is the 'fatty' nutrition she gets. Then I believe the dopamine goes thru her pick line.

So, nice quiet, non exciting day. That is what we like, we pray for lots of those non exciting days.~

Wednesday, July 9, 2008

Wednesday, good day...

Well we have not updated the blog because there have been just little changes nothing big to report. There still are only little things going on. Danielle is doing good still on CPAP. Last weekend there was a controversial effort made and she was switched just to regular oxygen thru a nasal canula. This lasted for about 24 hours and she was switched back to CPAP. We were very surprised that they attempted this because she is just so little, one doctor was not happy they tried it. But as the head doctor said 'they gave it the ole college try and it was a failed attempt, as I knew it would be.' Not a bad thing, it took Dylan 4 1/2 months before he got to try just regular oxygen. So when they put her back to CPAP they upped the settings from 4-6 which is still low. Tonight they actually did a chest xray and she was a bit over extended so they lowered the CPAP to 5. But these changes from CPAP to canula and back to CPAP caused her to get 'gassy' air inside her tummy and it to push up on her diaphragm and her belly to get distended. So they have her belly venting thru her feeding tube in her mouth and it is much much better, they still have it vented just to be sure. But she has had dirty diapers which is great. It is amazing with these little preemies how excited we get about poop and pee! I mean it is a really big deal!!

So on to pee. It was thought and still is that there is a bit of renal failure going on. I say thought, because her kidney ultrasound is normal, they give her fluid and she pee's it out, she is not puffy at all but her creatnine or kidney function numbers are elevated which leads them to believe there is some renal failure. This is a touchy subject with us. We don't want to be ignorant if this is a serious issue, which is it concerning. But depending on who you talk to, which doctor, the situation is different. But tonight the update Brad got was that she pee'd great today and her numbers are better. So we are great with that report!

Because of the gas in her tummy they stopped her feeds. As a result they are giving her obviously IV nutrition, this caused her electrolytes to be out of whack a bit and her blood sugar to be elevated. So they have adjusted her fluids a few times and the numbers are now good. They were hesitant to start feeds again today to be sure the numbers were good so hopefully tomorrow she can get mommy's milk again. But I have been giving her lollipops because she has been such a good girl! You know what her lollipops are right, the q-tip with breast milk. I just wanted to clarify!!

We or I the previous two days had experiences with nurses that we wish we could forget. The issues have been addressed and I stated our concerns. I for the first time yesterday felt like I could not leave, not that I wanted to but I felt uncomfortable even leaving to use the bathroom, it was that bad. Its just one of those things that we have learned that there is a developmental care plan for our daughter for a reason and if that isn't being followed and we feel like we are not being informed and nurses are being lackadaisical then we are speaking up. Unfortunately we have had to. We don't feel that her overall care by the docs is compromised, they are doing great. Just a few nurses who have treated our baby like she is 'just another preemie' is not what we are taking lightly.

So I have been able to Kangaroo now 4 times and Danielle and I both love it so much. It is such a bonding experience and it is amazing to look at her coloring after the Kangarooing and see how much better it is. It is just so great physically and developmentally for her. Hopefully daddy can do it soon, but he wants her to get a little bigger. She also is no longer under the bili lights. So her bed is always dark and covered with a thick quilt blanket. So it is very hard to get good pictures because it is so dark in the room. Here are a few new pics, she is now swaddled all of the time now and loves it. But you can't really see her face because she is so tiny and swaddled plus the room and her bed are so dark, but you can get the just of her in there.

So we just want her to keep going at an easy pace and just to be able to stay healthy, off the vent, be able to have feedings again and just to grow. It is really the prayers that keep us going strong and our little ones fighting.~

Friday, July 4, 2008

Happy 4th of July...

Nothing new really to report. Danielle is still doing great on CPAP with 21-24% oxygen and she is on one of the lowest settings also! Mommy got to Kangaroo today and it was wonderful. They have restarted her feedings today. 1.9cc's every 6 hours, so mommy and daddy keep telling her she needs to eat all of her food!! And today for the first time we heard her cry, it was heartbreaking as it is every time you hear a baby cry. But hearing her cry for the first time as she is only a week old, and Dylan we didn't hear cry for months, it is a great sign as it shows her strength. She just cryed for a second when I was holding her and the nurse was adjusting the cloth on her head that is holding her CPAP. Then we gave her a sponge bath this afternoon and she whimpered a few times when the water would touch her, just like all baby's don't really like their first baths.
A few people have asked about her skin coloring as in the pictures it looks red. We are unable to use a flash in her room and the lack of lighting makes her coloring look different than it is. Keep in mind her skin is still very thin so she will look more pink. Right after birth she was bruised in different areas of her body as a result of the birth experience but most of that is now gone. As you can tell from the one picture I put up a few days ago of her feet crossed, the light was hitting her feet perfect and that is a good sense of her coloring in person.
But she is doing great, she is our little star! We just keep praying like crazy that things continue great as they are~