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.