Sunday, September 28, 2008

7 pounds!!!

This jumbotron is the view from Danielle's new room.

Danielle is now just over 7 pounds! This is very exciting as she keeps growing strong. The other BIG news for Danielle is that she has begun to bottle feed and is doing GREAT with it! Friday night I spent the whole night with Danielle. This is when the doctor had told me earlier in the day that despite her being still on the high flow nasal canula that she would like me to introduce the bottle to Danielle so we can see how she will do. Well when I got to the hospital just before 8:30 she was wide awake and looking all around. I have not seen her this wide awake in a long time, weeks probably. So this was the perfect opportunity for her first bottle!

So she is now getting 2 ounces of food every 3 hours, still breast milk w/ fortifier. She did so great with the bottle and was cautious, sucking about 5 times in a row, swallowing and the pausing to breathe and starting over. This was wonderful news. She took almost 1/2 her feeding in about 10-15 minutes before she started to not be too interested anymore. I was SO excited! So we NG fed her the rest and when we put her back in bed she was still rooting around looking for the bottle, it was so cute. I then tried to give her the paci and she was so mad because there was nothing coming out. We didn't want to push her though and try to give her the rest of the bottle so we continued to NG feed the rest.

So I think that Danielle thought we were having a slumber party with mommy because she was wide awake ALL NIGHT LONG! It reminded me so much of new born babies and how they love to be awake at night! Mommy only got between 1/2 and 1 hour sleep total! But I took full advantage of spending the night with my girl. I held her and since the new room has a TV in it, I introduced her to TV and politics by watching the debate and then a little football. I was exhausted on Saturday but it was well worth it. So Saturday morning I gave her bottle #2 and again she did great! This was after a bath and she was still WIDE awake from the night before. She took just shy of 1/2 of 1/2 of a feeding, so less than the night before but she still did great. So finally just after noon Danielle decided it was time for a nap, thank goodness!! So of course she slept then all day and most of the night. So this morning mommy, daddy and Dylan went to see Danielle. Dylan immediately said 'baby' when he saw Danielle. It was precious, she peeked her eyes at the sound of his voice. The doctor who is on right now actually use to work at St. Lukes and had Dylan when he was there. She was able to see Dylan today and was so encouraged by him. We are very happy that she has Danielle now in Iowa City because we feel very comfortable with her and the care she gives. So Danielle got the 'ok' to get 1 bottle per nursing shift. So today she had her 2 bottles and took 1/2 of her feeding each time. So we will continue to move very slow with the bottle and give it to her only if she is awake for the feeding.
We are so happy she is now 7 pounds and getting so big. She is in newborn size clothes now, only 1 preemie outfit still fits her. Today is the first time she wore a newborn outfit and it just happened to be that the nurse put her in the newborn outfit that her Great Grandma Holub gave her just the other day!!
We pray that Danielle continues to keep growing strong and knowing that we believe in her every day of her life.~

Wednesday, September 24, 2008

Movin' on up...!

Danielle is movin on up!! She is now in a new room in a new part of the NICU in a completely different area of the hospital. This is the rooms they send the most stable babies to before they are able to go home. I included pictures of the new room, much nicer with more amenities. We have rooming in capabilities with a sleeper sofa, flat screen TV and full bathroom w/ shower. The room she is in is also normally meant for twins so it is extra big! This was a complete surprise for her to be moved, exciting but we were really confused at first and weren't sure we were ready for more change. But this is positive change so we are ready!!

She is weighing in at 6 pounds 12 ounces now, almost 7 pounds!!! She is getting so big. After her bath this morning I went to put one of her preemie outfits on her that she hasn't worn since last week and it was almost too small, this a good thing, on to newborn outfits now.

Tomorrow is her eye exam and we will hear about what they will do with her oxygen after the eye exam. As I mentioned before her settings are not down as low as they were before surgery because of her eyes. More oxygen and more flow help the ROP she has and hopefully prevent it from getting progressively worse. We don't want that so whatever she needs is fine with us.

She also has been able to be in a Boppy and a bouncy seat now. She loves both but especially the Boppy. I took this adorable pic of her in the Boppy this morning. I found her sleeping so soundly at 5AM when I went up to give her a bath. These things are great for positioning and getting her out of bed when we can't be there to hold her.

So, our little girl is doing great! We couldn't be more proud. Just praying she can be home soon, our goal for her is 3 weeks. We just have to keep believing and keeping the faith.~

Sunday, September 21, 2008

6 pounds 7 ounces!!!

Danielle is officially over 6 pounds now, yay!!! She is doing so good and being such a good girl. She got her stitches out of her incision on Friday, 3 days before they were scheduled to come out. We are VERY happy and surprised with how well the incision looks, you can't even tell there was anything there. The incision is only just a hairline thick, they did a wonderful job stitching it up. I have a pic here you can see how well it looks and her hair is already starting to grow back in that spot!

She is on the lowest setting for the high flow nasal canula. So the next step is what she was on before surgery. Hopefully they take her settings down in the next day or so. She did get a blood transfusion on Friday. Her numbers have been borderline for awhile now and just being post op they decided to give her a boost, which is completely fine and not a bad thing at all.

Mommy and daddy had a little getaway in Chicago this weekend. We missed our babies so much but it was nice to have a little getaway. We found either one or the other of us calling to get updates frequently, as as we hoped both kiddos did just fine. It was very nice today though to go to the hospital right when we got home and give Danielle her first bath in the tub since surgery. She loved it just as she always loved it before. It was great to let her soak in the tub, be able to wash her hair again and have her fingers and toes dangle in the water. We try to make it so relaxing for her and just the way she wakes up and relaxes we know she loves it!!

So, no new changes for our baby girl. She is just getting bigger, eating all of her food and getting stronger day to day. We love her so much and are so blessed to have her as our baby girl! Here are some pics from the past few times we have seen her. And the first picture is the 'bean bag hand' called the Zaky, Danielle loves it!~

Monday, September 15, 2008

SO big....

Danielle is growing so big. She is 5 pounds 12.4 ounces as of last night. She is getting just shy of 2 ounces of food now every 3 hours and loving it!! They are still mixing fortifier in with the breast milk to give her some extra calories and those calories are doing a body good that is for sure!! They lowered her settings down 1 setting on the high flow nasal canula. Her chest x-ray today showed unchanged from yesterday so when she gets a little more expanded they will take her settings down again. She has not had any 'spells' for days, she is just doing great. Today the Developmental therapist for the University came in and is coming up with a care plan for Danielle as St. Lukes did on a weekley basis. This helps Danielle have good posture and positioning habits.
Neurosurgery does not want her to lay on her right side of her head until she gets her stitches out next week. I saw her incision yesterday when they came down and changed her bandage and it is healing nicely, it looks really good. The bandage was stuck to a part of her hair so the surgeon asked my permission to cut it out, I said 'yes', her hair will grow back and he was delicate about it! We have been holding her when we are there and giving her some tummy time as she lays on our chest. She just really tries to move her head to the right side so we have to position her differently so she doesn't lay on that side of her head. She is a strong little girl and fights with all of her might. She is loving her pacifier!! This is great because as soon as she gets back on .5 liter canula we will begin to bottle feed.
Danielle is back in a crib. The pictures of us next to her in the warmer bed are from last Friday night. We did her bath in the warmer bed then put her back into her clean crib once she was all spruced up! It will be so nice to get her stitches out next week so we can do a bath in a tub again because that is truely a realxing time for her. We know she loves it!!
The University has a new positioning device that we did not have the chance to use when Dylan was there. I will take a picture of it tomorrow because it is SO neat. It is a tubular looking bean bag with an adult size bean bag hand sewn on the end. We position the bean bag tubular part behind her back or side and place the hand on her body so she thinks a 'person' has a hand on her for comfort. This morning I placed the hand on the back of her head, this afternoon they placed the hand on her bottom as she layed on her tummy. She loves it and it is comforting to her when we can not be there.
So Danielle is doing GREAT! We are very happy with everything, she is such a strong little girl and getting stronger every day. Thank you lord for blessing us with our tough little miracle girl.~

Thursday, September 11, 2008

Transport to University of Iowa...

Don't be alarmed. Last Tuesday Danielle was transferred to the University of Iowa via ambulance. This was not an emergency transport, Brad and I have known that this would possibly be in the works for a few weeks now. Danielle did great with the transfer and we are very pleased with how she is doing and the great care she is getting. You can see from the pics she tolerated things well. The pics of her being loaded into the ambulance and the transport isolet she was just looking around. She was awake the whole time!! Her current doctor at the U is one that Dylan had when he was there. Dr. Ziegler remembered Dylan, the room he was in, a few of the issues he had, and everything all by me telling him Dylan's name. Pretty impressive considering it was 2 years ago and that he has seen probably over 300 babies since then.

So within a day after Danielle was born we became aware that she had a Cranial hemorrhage. Keep in mind this is something that occurred and stopped, a hemorrhage is not something that continues. It could have happened before she was born or after, it is unknown when or why it happened, but it did, and cranial hemorrhages are fairly common in preemie babies. It has been at our discretion not to share this information until now. Mostly because this is something that nothing can be done about. There is no medicine or anecdote to reverse it etc. Unfortunately it happened, but we move past it and believe in the best.

So as a result of the hemorrhage Danielle had excess Cerebral Spinal fluid in her head. For the past month or so the doctors have been draining a small amount out at a time via her soft spot. This is actually less painful for her than to have a new IV started in her arm. They have decided the amount of fluid they would take off depending on her head circumference. So they started the taps out at every 24 hours, then by the time she was transferred they had been able to space them out to every 72 hours. It was hoped that they would eventually be able to stop the taps and the fluid would drain correctly. For a few days it looked like they could space out the in between time, and then 72 hours ended up being the magic time. So we started talking about a potential transfer to the University for evaluation by a Neurosurgeon and talk about a possible shunt placement.

Long story short, she was transferred and had a shunt placed in this past Monday. She was scheduled for Wednesday but they decided about 4pm Monday to do it right then because the OR had time open. Daddy walked his little girl to the OR as far as he could go. He said she started at him the whole time and it made him feel horrible. But he was very glad to be able to take her as far as he could so she knew we were with her. The surgery went great. It was to take between 2 1/2-3 hours and it ended up taking only 2, but the longest 2 hours in our life it seemed like. Basically the shunt will allow the fluid to flow directly into her stomach lining where the cerebral spinal fluid will then be reabsorbed. The shunt is pressurized so it knows when to drain and how much. She had to be placed back on a ventilator for the surgery and today she already came off the vent and back onto high flow nasal canula oxygen. She is now back up to full feedings and all of her IV's were removed yesterday. You can see from the pictures that she has no real special bandage or anything, just a bandaid over the incision on her head and belly. Her neck is a little puffy from the IV fluid but she will pee that out or grow into it. After all she is getting a lot bigger being over 5 pounds now! The Neurosurgeons come and change the bandages and are happy with the way the incision is healing. It is an incision just behind and a little above her right ear. It will be totally coverd by hair. For surgery they had to cut some of her hair and the nice Neurosurgeons put it in a plastic baggie and labeled it '1st hair cut'. :)

So Danielle is a trooper, she is doing great. The lord has been with us thru all of this and protected our daughter. We really believe in her and we have decided that we will keep Danielle at the University until discharge. We have no real reason to put her thru transport again going back to St. Lukes. Although St. Lukes took great care of Danielle and we don't have any complaints, we would like her to be followed by the same people Dylan is followed by in Iowa City. That is who we feel comfortable with and we can deal with the extra driving now and when she comes home in order for our daughter to have the best care possible.

She did have an eye exam today and thankfully her eyes look a little bit better, definitely not worse. They are still keeping her oxygen setting up high to help her retina's, whatever she needs is fine by us! She will have another exam next week. Dylan also had his eye exam in Iowa City today and he was able to see his sister again! He did great, quietly looked at her and when she squirmed he even said 'baby'. It was pretty cute. For a few moments she opened her eyes and they quietly stared at each other. It was precious!! I was really glad he was able to go up and see her. I didn't know if they would let him in, they are even more strict up in the NICU now than when Dylan was there.

It has been amazing to have some of the same nurses that Dylan had and they all treat us wonderfully! Everyone has been amazed at the pictures of Dylan, and they have been very encouraging and reassuring that Danielle will also thrive as much as Dylan has especially when she comes home! The University is the best of the best. St. Lukes was great too but there are so many different things about each place, definitely pros and cons. But having Danielle in a place with all of the top notch technology and physicians really means a lot. 'Changing Medicine, Changing Children's Lives' we can really attest to that statement.

We really believe that when she is sleeping that the angels are speaking life to her and her big brother Dalton is helping give her the strength to fight and know that we believe in her. We are hoping to have Danielle home in a month or so, that is our goal. Thank you lord for protecting our children and blessing our family.~

Sunday, September 7, 2008

5 pounds!!!

Little miss Danielle is growing like a little weed! She reached the 5 pound milestone this weekend and we couldn't be more proud of her! She is still getting just over 1 ounce of food every 3 hours. Her being up to full feedings is helping her growth so much. Some people have asked if she is growing 'faster' than Dylan did at this age? The answer is 'yes', this is because she has been up to full feedings much earlier than he was because he was so sick. This is such a wonderful thing for her growth wise, maturity wise and also developmentally.

Her eye exam showed that her ROP has progressed a bit. They will still re-check her in a week. But they now took pictures of her Retina's and can look at the pictures week to week to see if the ROP has progressed or re-gressed. We want it to regress (get better). Also, the Pediatric Opthamologist changed her oxygen setting to be at 100% all of the time. This is so different for us because she was only requiring between 22-25% oxygen and now they are giving her 100% whether she needs it or not. But increased oxygen at the gestation she is at can have a significant benefit on preemie baby's retinas, so this is the reason for that change. She still is on 0.5 liter nasal canula and in reality, if she were to come home on oxygen she would come home on 100% anyway because at home we don't have the capability of having an analyzer to change her oxygen settings. So we are praying that the lord takes great care of her eyes and she continues to be a strong little girl and that her eyes will be just fine.
In a few of these first pics you can see she had her feeding tube coming out of her mouth. One nurse did that and the next nurse changed it, thank god! It is just better to have it in her nose because we only want 'positive' things in her mouth so she associates the 'positive' pacifier with feedings to get ready for bottle feedings. That is why it was changed back, thank goodness!!

We are so fortunate the lord has blessed us with our precious baby girl. She has touched our hearts just like Dylan has. The love we have for our children is just unimaginable.....we pray that God protects them every day of their life and they continue to grow and be healty.~