Some More Pictures

A Week Update... better late than never

I apologize for the delay in posts, we have been quite busy this past week. While Paul was in Puerto Rico his grandfather passed away. So on Saturday morning we went to see Briana and then on Sunday left for Iowa. It was wonderful to meet all of Paul's family and get to show off pictures of our baby.

Briana has been doing very well. The nurses are still attempting to ween her from her oxygen and she's now on one liter. As soon as she can control her breaths to under 60 breaths a minute we can start breast and bottle feeding. She still is occasionally having spells. There are times she recovers on her own and sometimes she needs some help. The nurses area also trying to get her off of her cannula! I'm hoping that by the end of the week she might be completely breathing on her own!

Briana was really having a lot of trouble pooping. She hadn't pooped in over 24 hours so the doctors gave her a suppository. When Paul and I went to visit her on Sat. Paul got to hold her for the first time since he had returned from Puerto Rico. After he was done we but Briana back in her bed and I got to change her diaper. At first she just had a little smear and we were happy with that. As I continued to change her diaper she went in to ice cream machine mode and continued to poop. I tried to put her butt into the diaper and thought I had done so fast enough but a nurse later pointed out the projectile poop across her bed. There was so much that they had to change out her bed completely! She is completely Paul's daughter.

Briana is still having difficulty pooping so they have given her a drug that should help basically help her intestines push along with another suppository today. Briana hasn't pooped since her explosion mentioned above, so it's been almost 72 hours. Her stomach isn't distended and is soft which are all good signs but she needs to poop on a more regular basis. The doctors have still been increasing her feedings, 16 cc's now! However, they've extended her feedings over 2 hours.

The doctors also have explained to Paul and I that Briana is big enough were they are going to put her in an open crib. She has to be able to maintain her temperature so they are slowly lowering the temperature in her bed and observing how she tolerates it. It's a little crazy to think about her in a "big girl bed" but it's a great step in the right direction so that we can bring her home.

Today I went in to visit Briana and brought her a swing that we had received for one of our baby showers. It was so good to see her again even though Paul and I were only gone for a couple of days. When I finally saw Briana she opened her eyes and started smiling at me. It was so wonderful to know she knew who I was and that I seemed missed. After holding her for quite a while I decided to test out the swing with Bri. She is so small in it! It was so funny to watch her expressions as she heard the music. I don't think she was thrown off by the motion but she kept looking around in the direction that the music was coming from. Once Briana is in an open bed and when she's awake the nurses will put her in the swing. It's a wonderful thing especially when Paul and I can't be there.

Also, Briana is 4.1 lbs! She's a big girl and is still growing! She looks so cute now and is constantly filling out. One of the nurses placed a bow in her hair and it looks absolutely adorable. At first I wasn't sure how they that put the bow there without a clip but a nurse informed me that they used KY jelly. Apparently it hardens and keeps the bow to the head but is also water soluble, she looks amazing.

Thanks everyone for checking in, sorry it took so long to update it!

Briana has been doing excellent. She's still on oxygen and the nurses are still attempting to ween her from the oxygen so that she can breathe on her own. Briana varies between 21-25%, which is very good. However, every time the nurses attempt to lower her oxygen take she will tolerate it for a while and after a couple hours will get pooped out. After that the nurses will turn up the oxygen for a bit and then the process starts all over again.

The feedings are going great as well. Briana is now taking 12 cc every four hours. She's still having little to no residual.

I also got to hold Briana for a total of 3 hours today. It's always amazing getting to spend time with her. The first round of holding her consisted of both of us taking a nap together, I was so tired and it's so relaxing after holding her for awhile. The nurses were teasing me telling me that the NICU must be starting to feel like home if I'm able to sleep but little do they know that I can pass out anywhere!

The second time I held Briana today was also special. I came back after having some dinner and went to see her and she was just smiling up a storm like she was so excited to see that I was back. When she was in my arms she was still smiling and she looked up at me and gave me two really loud coos, the loudest I've heard thus far. She was talking to me! It's was amazing to see her really interact. After that she was up for a while and then fell asleep in my arms, a perfect end to a perfect night.

Big girls wear clothes

Early Monday morning I called to check in on Briana and the nurses told me that she was doing great and that they had dressed her. I was excited to see her in some clothes and brought the preemie clothes we had for her. When I made it to the hospital the nurses had put Briana in newborn clothes and she was swimming in them. The nurse helped me take the clothes off and I got to hold her for a while. Afterward we put her in one of the preemie outfits and she looked so adorable! It was almost surreal to see her in some clothes because she seemed so grown up!

Also today Briana was taken off the si-pap and placed onto a cannula. This is a huge step in the right direction. They are slowly going to start weening her from the cannula and so far she has only had one spell. The cannula is much easier on Brianna's nose and there is less air being pushed into her nose which makes it easier for her to hear. When I got to hold her today I think she was rather surprised by all the sounds that she could hear around her. Every beep from the other monitors would catch Brianna's attention, it was so cute to see her reactions.

Briana has also been tolerating her feedings quite well. The doctors have increased her feedings from 4 cc to 6 cc with little to no residual. The nurse and I also discussed that int 2 days Briana will be a gestational age of 32 weeks. This means that she should have her sucking reflex developed and Briana should understand to breathe, suck, and swallow at the same time. However, Briana will not be able to breast feed or bottle feed until she has been further weened off the oxygen, so hopefully soon. I am quite excited to start that bonding process that breast feeding allows.

The echo scan of Briana's heart was also taken today and she still has a moderate to small hole in her heart. Clinically she is doing so well that the doctors do not want to operate on her yet. From what they have told me they want to wait till she has plateaued at some point, whether that be being weened from oxygen or having trouble feeding again. Once this happens they will then do the heart surgery. So the surgery will still happen but not until she is a little bigger, this is quite reassuring and also it allows Paul to be there too.

It is so nice to have Briana doing so well for a change. I am almost a little worried that I may jinx it at some point! Hopefully everything will keeping heading in a positive direction. I want to thank everyone for their prayers, it seems to be working! It means the world to both Paul and I to have such amazing support!

Moving Uphill

Briana is doing so well. She's been gaining weight consistently, as of today she now weighs 3.78 lbs. They re-started her feedings again and she has been tolerating them so well that they have now increased them to 4cc! Briana also has very little residual coming from her stomach. She's been pooping stools on a regular basis. Briana also has only had one spell since being off the ventilator, she's been doing such a good job.

Tomorrow, Monday, they're going to do another echo scan of her heart to look at her PDA. Hopefully it has closed on it's own but if not then the surgery for Wednesday is still on. Also, tomorrow she is done with her antibiotics and they will do a blood gas and check to see is her infection has cleared up.

On Friday Briana was stable enough that Paul and I were able to hold her. It was amazing. Briana was passed out for most of the hold, she did open her eyes for Paul. Today Paul left for Puerto Rico and after dropping him off at the airport I went to the hospital too see our baby. I got to hold her again today and she was awake for 30 minutes while holding her. She would coo and was looking up at me and all around, it was so perfect. After she fell asleep she was a cuddled in and was making a suckling noise. I just can't wait to bring her home and have all these moments all the time!

I was holding Briana's hand and talking to her. She looked up at me and squeezed my hand! She knew daddy was there with her.

I love to see Briana smile, it just melts my heart!

Malia and I went to visit Briana last night. My highlight was when I got to hold her in my hands while the nurse changed her bed sheets, it was pretty awesome! Holding Briana made my day. Notice Briana's left arm behind her head while she's relaxing/sleeping, just like her daddy.

She's doing well with the exception of some adversity she still needs to overcome. But she's a Kelly so she'll knock it out of the park! : ) I just talked to the resident on staff at the NICU and she said that Briana has pneumonia in both of her lungs. She also has an infection in her throat from the ventilator tube however, she is currently on antibiotics to treat both infections. Hopefully both infections will be gone by Tuesday so they can operate and fix her heart on Wednesday. They will do another culture test to see if the infection is gone and see if she's suitable for heart surgery on Wednesday to close the PDA. If not, they will put the surgery off until she's infection free. Please join us in prayer so the surgery goes well with no complications.

She has had a tough time taking breast milk feedings since birth and they weren't sure why. Today they did a Lower GI test to see what was going on and they found a block in her intestines. The block was hardened Meconium stool. Meconium is the stool that baby's first have from the amniotic fluid they swallow when in the womb and is a tar-like substance. The Meconium stool hardened in her intestines causing a block which created the stomach problems she's been experiencing. In a nutshell, she was constipated. After the procedure she passed the Meconium stool that had been blocking her intestines. They are going to start feeding her again tonight and will monitor her progress.

Overall she's doing well. She's stable, is taking breaths by herself (in between the ventilator O2 pumps), is smiling and happy to see her parents when they come to visit. She has a fit every now and then but that's OK! We're just glad she's not lethargic anymore.

Malia has been doing a phenomenal job visiting and comforting Briana every day. I can't say enough about my lovely wife. She has been great through this experience and has a heart of gold. She's a awesome mom, thanks babe!

I wish I could visit Briana every day too but someone has to work! : ) This whole experience has been very distracting from work and other aspects of life, but FUJIFILM Medical Systems has been very supportive and understanding during this stressful time. I feel very, very blessed to work for such an awesome organization. I cannot say enough about who I work for and the people I work with, they are a stand-up people who really care about you. We have received an overwhelming out pour of support from everyone we work with. Thank you all from the bottom of our hearts!

Unfortunately, I will be in Puerto Rico next week for work, the surgery was planned yesterday last minute. But my Mom volunteered to go with Malia during the heart surgery on Wednesday. THANKS MOM!!! It's nice having a Mother that is a RN with a Masters & PHD in Nursing. Mom drills the nurses with lots of questions when she visits and gets the "clinical" low-down on Briana. Its awesome and reassuring.

Well, that's it for now. I'm sure Malia will have more to post when she gets home.

Thanks again for all of your support. Take care and God bless all of you! We love you!

Paul and Malia

Oh Baby

Briana has been doing quite well for the most part. She's gained weight and is now 3.3 lbs, quite a big girl! She has started her feedings again with breast milk. Since they've started her feedings they have also increased the dosage which means she's tolerating them well. The nurses have also allowed me to swab her mouth with the breast milk. Briana started to suckle the swab and had the funniest look of her face! She's quite a character..

Briana also hasn't had any spells since she's been on the ventilator. She's maintained her temp. and she's been pooping! I really never thought I'd be so concerned about poop before but life is full of surprises. Also, Briana has been less fussy and more observant. She's constantly looking around and is now beginning to notice her tube and doesn't like it.

The doctors did talk to me about Briana's PDA. The hole in her heart hasn't been closing in spite of the medication they've given her. She now has a moderate size hole in her heart and they don't think that the hole will close with more medication. The next step would be surgery. The doctors believed Briana would do better, off the ventilator, once the surgery was complete. It's a non-invasive surgery, they go through the arm pit and will use two stitches to close the hole. As of right now more blood is going to her lungs and the blood should be going to her organs. The procedure should take about an 1:30 minutes and they say the recovery time is about 48 hours. The doctor is confident enough about the surgery that he told me if Briana did not have an infection he would send her into surgery today but since it's not an emergency we could wait till next week. This makes me feel quite confident about everything and I believe Paul feels the same way.

Both Paul and I ask for your prayers for Briana while she is going through this ordeal, thank you so much.

A Good Day

Today would be classified as a good day. We received news that Briana does not have pneumonia and they believe that it was an upper lobe of her lung that collapsed. However, it seems from the chest x-ray that the ventilator has fixed this problem. Also, her cultures, to see if she has any infections, have mainly come back negative. They let the cultures grow for 24 hours, 48 hours, and 72 hours. So, we’ve made it past the 24 hour mark and are hoping the rest of the tests show no growth as well. She only has had one culture come back positive with some bacteria from her respiratory tube but the doctors are going to continue to let it grow so that they know the proper antibiotics to give Briana. To be safe they started her on another antibiotic to cover all the bases until they can figure out what is really going on. Briana’s blood gas levels are coming back normal so the doctors are starting the process of weaning her off the ventilator again.
Briana had a doctor from infectious disease came to look at her today so that she could help diagnosis her infection. She listened to Briana’s heart, lungs, and stomach and said that they all sounded great. She also commented on Briana’s coloring, also great. She told me that she wasn’t quite sure what she had because she was doing better compared to the day before. She also said that this could be from the antibiotics that they were in the process of giving Briana. Paul and I are hoping that they’ll be able to figure this all out soon so that we can get her moving on the right path.
Also, Briana was less fussy today. She had a couple of upset fits, which is very common she hates having the tube in her mouth. However, she is beginning to suckle on it every now and then which is so cute! Bri was continually looking at me throughout our visit, I loved it! Briana gave us the biggest smile I’ve seen thus far; it was a beautiful toothless grin. She really cracks me up. Hopefully tomorrow will be another good day because she really needs a couple good days in a row.

We found out from the resident at the NICU that Briana wasn't doing very well this morning. She had a couple bad spells this morning early before rounds which required them to turn up the o2 on her ventilator and give her stimulation until she came out of it.

After doing rounds they found that Briana's bed was set too hot and that her temp was a little too high as a result. Her temp probe was not connected to her because the nurse took it off last night, so the resident put it back on her this morning. This is the 3rd time her bed temp was set incorrectly. Her bed was set too cold twice before and she got hypothermia. This didn't make us very happy.

Briana's blood gas level is also abnormal this morning, it was high so they raised the o2 level on her ventilator. They did a CBC to check her red and white blood cells, hemoglobin, etc. Her blood is on the acidic side (acidic vs. basic) and they want the equilibrium to be normal so they did another blood transfusion. Her white blood cell count is also high so they think she has an infection. They are going to take Blood and Urine cultures to check for bacteria and viral infections. After the cultures have been taken, they will start her on 48 hours of antibiotics. They are also going to do a Lumbar Puncture (spinal tap) to draw out CSF fluid (spinal fluid) to check for meningitis. She's going to get poked a lot today. At the time of giving consent, I requested they give her a local to numb the area before doing the Lumbar Puncture. The resident said that it can take up to 2-3 attempts to get the fluid they want. This way, Briana only feels 1 prick in that area. I've had one before and they're not fun. In a nutshell, she's feeling pretty bad today.

Malia and I are on the way to see her now.

Briana's Two Weeks Old!

Briana is officially two weeks old! She actually looks more mature and is more responsive as well. It's amazing to think that we're this far along already, it's been a crazy ride. Briana has been on the ventilator for almost two days now and things are going rather well. She has not had a spell at all since she has been on the ventilator, which is so comforting. Briana was working so hard to breath and this is a much needed break for her. It’s just heartbreaking because she can cry but you can’t hear it, you can only see that she’s upset. However, they have started her back on her feedings again and it seems to be going well. The doctors also did her echo today and we received the news that her PDA is getting smaller! They are going to give Briana a couple days so that the PDA can hopefully close on its own and if it doesn’t they will put her on another round of ibuprofen again. She has also been gaining weight and is almost three pounds now, a big girl!

It’s been interesting having Briana in the NICU because even though Paul and I are parents it really isn’t the same. Right before Briana went on the ventilator she was throwing a fit and I wasn’t quite sure what was wrong. After pulling her arms toward her chest and slowly giving Briana her pacifier she calmed down and I felt so proud that I could do it, I called it a mom moment. Today, while Paul and I were there, Briana got rather upset again. Paul was talking to her and lightly moving her while I was holding her hands. She still was rather fussy and we had the idea to change her diaper. After the change she settled down and fell back asleep. It’s rewarding to know that Paul and I are going to be alright as parents and it’s special because we don’t have a lot of moments like this because she’s not home yet. Hopefully she’ll be home soon because it’s almost impossible to leave her sometimes.

Day 14...

We called in this morning to see how Briana was doing. The nurse said that Briana had a lot of bad spells this morning between 1AM to 4AM. They had the ventilator next to her bed yesterday but did not put her on it. Malia asked why it was next to her bed and the nurse said that they had it close to her bed in case they needed to put her on the machine. I think they were just preparing us for the worst, the reality that they will eventually put her on it. When we called this morning, the nurse said they will probably put Briana on the ventilator machine today due to the frequency and severity of the apnea spells she has been experiencing. She said last night was especially tough on Briana. We are heading to the hospital now to see Briana and spend the day with her.

Please join us in prayer for our daughter. She needs our prayers to pull through this.

Thanks again and God bless you all,

Paul and Malia

UPDATE: 4:00PM
They put Briana on the ventilator a couple of hours ago at 2PM. Malia and I left the room while they intibated her. The tube is small (we were thinking it would be large like on TV...) and now she won't have to work so hard on breathing since the machine is doing the work for her. The ventilator machine has a big control panel with tons of dials, buttons and controls. We are hoping this will eliminate most of the spells.
Paul

Day 11...

Yesterday was such a wonderful day because I got to hold Briana for the first time (Kangaroo) and we also received good reports from the doc's and nurses. Today was quite the opposite.

Today Malia and I witnessed Briana's worst Apnea spell thus far. At first she was being very fussy and was squirming all over the place working herself up pretty good. After her little fit, she became very relaxed and then the spell hit. She just wouldn't wake up and/or breathe. I started pinching her foot and Malia was rubbing her back trying to stimulate her so she'd wake up and start breathing again which usually works. The nurse came over and began trying to revive her. After what seemed like 5-10 minutes of trying to revive Briana, the nurse had to bag her. She also had to sit Briana up and pat her on the back to get her breathing and heart beating. Briana's skin went from a beautiful olive color to a grayish color and began turning purple due to lack of oxygen in her body. Malia and I looked at each other in shock, we were mortified.

After the nurse bagged her, she got the suction tube out and suctioned Briana's throat and nose. She also switched her back to the CPAP that has the prongs that goes into her nostrils. Briana's little nose is badly bruised and is completely purple due to the pronged CPAP being so tight over the last 11 days. It broke my heart. They are going to keep her on the triangle shaped CPAP which has no prongs so her nose can get a rest and can heal. The downfall to the triangle CPAP is the seal isn't as good as the pronged seal. She also has bruises on her forehead from it being on so tight. When they took the CPAP off to switch the adapter to the triangle we noticed another two bruises on her head. Malia asked what they are from. The nurse said they are there from the medical staff poking her with needles when attempting to find a new vein for her IV. She's really been through a lot today.

They did another Echo of Briana's heart this morning and found that the PDA is bigger than it was 11 days ago. They started her on Ibuprofen today to help close the PDA. The PDA is a chamber between the Aorta and Pulmonary artery of her heart. She will get 2 more Ibuprofen doses over the next two days for a total of 3 days of treatment. They will do another Echo of her heart on Tuesday or Wednesday to see if the PDA has closed. Hopefully with 1-3 treatments of Ibuprofen it will close and we can overcome that issue. If the Ibuprofen does not close the PDA after 2-3 treatments, they will have to do surgery on Briana's heart to close it.

The PDA is a major cause to Briana's apnea spells. If we can get the PDA to close, she will have much less apnea spells. This is the next big benchmark Briana needs to reach. Please join us in praying that the treatments work and the PDA closes so her heart can be healthy.

We talked with the attending doctor this evening and he said over the next 3 months, the experience we will have with Briana being in the NICU will be the hardest thing Malia and I will ever deal with in our lives. I've been through a lot and I have to say, I agree with him. One day will be great and our spirits will be high and the next could be too or it could be the complete opposite, just like the last 48 hours. It seems like we consistently have to overcome adversity, which is more emotionally draining than what Malia and I expected. There is no worse feeling for a parent than being completely helpless and powerless when your baby is going through so much. We wish there was more we could do.

Some More Pictures of Our Beautiful Baby Briana!

Holding Briana!

Yesterday I was fortunate enough to be able to hold Briana for the first time. It was amazing. I have never felt anything like that ever before, I was over whelmed. When the nurses placed her on my chest she opened her eyes and looked up at me I really felt like she now knew who I was. I felt like Briana now understands that I am her mom and not just some crazy woman who comes and visits her every day. While we were sitting there I would sing to her and just talk to her and Briana would look and me and make these little noises, she sounded so content. This was a moment I knew I would never forget.

Paul did not come with the day I held Briana because he was not feeling quite well. Neither one of us can afford to be sick right now nor do we want to risk getting Briana sick. I wanted Paul to hold Briana as soon as he could because I wanted him to experience the same things I did.

Paul and I went to visit Briana at the hospital today and I asked the nurse if Paul would be able to hold Briana, and she said yes! I was so excited for Paul and he was too. It was quite amazing to see the nurse place Briana on Paul’s chest and watch him hold her. I was trying not to get too teary eyed. Just to get to see Paul bond with his daughter really made my day.

I also was able to hold Briana again, also incredible, it never gets old. She still just looks at me with her blue eyes and I melt. Once my time was done the nurses placed her back in her bed and I was able to change her diaper. And she just looked at us which makes it that much harder to leave. We love her so much and feel so blessed to have her in our lives.