Tears...

Today I shed some tears... happy tears. Brooke came off of the oscillator and was put on the ventilator today. It seems funny to say that being put on the ventilator is a good thing, but after all she has been through this week it is great! After she was put on the ventilator, she took a while to adjust, but she is now a bit more herself. She looked at us for the first time in a week which was truly wonderful!

Overall, Brooke is doing better. Her ultrasound showed that her liver and gall bladder are sick, but they seem to be improving slowly. Her kidneys are working well and her seizures are controlled by the medication. Brooke's heart is still working hard and they are still having to help her manage her blood pressure with medication, but it is working. The news today is that Brooke is addicted to narcotics - she has needed so much fentanyl and versed over the past week for sedation that she is now an addict. They are bringing in a toxicologist to help her get through the withdrawal.

I also talked with the infectious disease doctor today and they still do not know what caused this. They believe that it is either medicine or a virus, but can not find any evidence of either so far. He did say that usually when they can not find a cause, the patient survives. And that's all that really matters.


We want to thank everyone for their love, support, and prayers throughout this last week. We also want to thank Grandpa for his love, humor, and compassion. He passed on peacefully today and we like to think that he put in a good word for Brooke. We will forever miss him.

She is a fighter

The doctors have said that one of the reasons Brooke is still here with us is because she is a fighter. They are all impressed by what she has gotten through. We are so proud of her and keep asking her to keep fighting.

Yesterday, Brooke had an echo on her heart and they found that she has hypertrophic cardiomyopathy & pulmonary hypertension and her heart is working extra hard. However, it is still working and they started her on a new blood pressure medicine to slowly bring down her blood pressure which was at one point 170/110.

They also did a head ultrasound to check for any major brain hemorrhages and it was clear. She does have hepatitis, or inflammation of the liver, and they are trying to figure out how to help that. Today they will do an ultrasound on her belly as it has gotten rather large over the past few days. She is making small improvements with her oxygen needs, but still has a long way to go.

Brooke still needs a lot of prayers. We also ask for you to pray for Jason's family as they are saying goodbye to Grandpa Bill Robenault, Crystal's father. We know we are asking for a lot of prayers, but Jason's Grandpa has just been admitted to the hospital with heart failure and has been told that it is time. Grandpa Robenault has always been a positive and optimistic person & that is helping us get through this difficult time.

Still fighting, still praying

Brooke is still working hard to beat this virus, but the issues keep piling on. The spinal tap showed that the virus is not meningitis, so they still don't know exactly what virus she is fighting.

Last night, she began to have trouble with her oxygenation levels again and was put back on the oscillator. So far, her breathing has been okay with this major support. The scary thing is that this is the last machine they have to help her.

Her heart & liver are also now major concerns. Her liver is showing signs of damage and her blood is not coagulating as it should. Her heart rate has dropped low and her blood pressure is extremely high. They are doing all they can to manage this, although her blood pressure is not responding as they had hoped and they are clearly worried. She has been seen by numerous neonatologists, the pulmonologist, the cardiologist, and the infectious disease doctor. They are really trying hard to figure out how to help her, but her case is clearly very difficult & confusing.

We decided to have Brooke baptized last night as things continue to worsen. The doctors have told us that she is critically ill and that the road is going to continue to be tough, but that all hope is not lost. So we are praying. Thank you for your love and support.

Extra Prayers Needed

Brooke is very sick. Early Saturday morning she started having seizures. She is still fighting a fever. They are giving her 100% oxygen at extremely high settings on the ventilator and she is not getting enough oxygen through her system. The doctors & nurses are doing everything they can to try to figure out what is going on and how to help her. At this point, they are guessing that it might be meningitis and they are going to do a spinal tap this morning.

She needs your prayers. Brooke is a fighter, but has a lot working against her right now. Please pray for our beautiful little girl.

Stainless

Brooke continues to be a fighter. Yesterday I was home with strep throat, which I caught from Owen (who bounced back very quickly). I obviously couldn't go to the hospital, so I kept in touch with the nurses & doctors by phone. At 2:00, Dr. Lakser, the pulmonologist, called and we talked about the next steps for Brooke since she was just put on the ventilator. At that point she was doing well.

At 4:00, Dr. Millard, the attending neonatologist, called and let us know that Brooke had a fever. They were afraid that she had some sort of infection and she was working to get rid of it. I immediately worried that it was strep throat too, but the doctors ruled that out because she was already on antibiotics that would have caught it. They are doing a blood culture to try to figure out what the infection could be, but it takes a few days to grow. They also started her on additional antibiotics to address any infection that it might be.

At 6:00, Dr. Myers, the overnight neonatologist, called and let us know that he was starting to get worried about Brooke. In addition to fighting off the infection, her potassium levels were high. Her potassium level should be below 6 and Brooke's was 10.4. This can be really dangerous on the heart and was starting to cause some heart arrhythmia. It can also lead to a heart attack.

At about 7:30, Dr. Myers called and told us that he was extremely worried about Brooke and that even though I was still contagious, we should come in and be with her. She was apparently blue, listless, and unresponsive. Her heart rate and blood pressure had both dropped extremely low. She wasn't going to the bathroom and the best way to get rid of potassium is by urinating. They were worried that her kidneys weren't working and that her body was starting to shut down, possibly due to sepsis. The two things she was battling, infection and a high potassium level, were both separately life threatening. Together they were giving her an extremely difficult time and he was worried that she might not make it through the night.

Of course, Jason and I rushed up to be with Brooke. (And a huge thank you to my sister Becky who rushed over to be with Owen.) Brooke was pretty out of it, but we were extremely glad to be there with her. Soon after we arrived, she peed. We have never been so happy to see a dirty diaper. Brooke was being taken care of by one of her primary nurse's, Hayley, who was clearly shaken up by the afternoon's events. But we were extremely happy that she was in her care because not only does she know Brooke extremely well, but she is a wonderful nurse.

At this point, we asked the doctor if Brooke was going to make it through the night. He told us that we would have a better idea after the next blood test. If her potassium level increased, she would have a tough time. He also was looking at her base excess number, which measures the amount of base in the blood. Brooke is usually on the plus side and the norm is between +2 and -2. Earlier, she had been -10 which was too much acidity in her system. He said that this number needed to improve also.

Obviously, we were extremely nervous for the blood test. The news was great. Brooke's potassium level had dropped to 5.4, not only below her previous level of 10.4, but also below the normal level of 6. Her base excess number was +2.2, a total turnaround from where it had been before. We were extremely relieved as it seemed that Brooke was past the worst of it.

Today, Brooke is doing a little bit better. Her heart rate and blood pressure are back to normal. Her color and her oxygen needs have also improved. She still has a fever and is clearly fighting off an infection or virus. Nothing has grown in the blood culture, so they aren't sure of exactly what it is yet and will continue to watch her closely. Brooke's hands and feet are extremely chilly because her body is naturally protecting her vital organs, so she is fashionably wearing socks to stay warm.

Dr. Millard has nicknamed Brooke 'Stainless' because she is as strong as stainless steel. She still has a lot of work to do to battle this infection, but she is our little fighter. She definitely needs lots of positive energy and prayers right now. We thank all of you for your continued love & support.

The Andersons & the terrible, horrible, no good, very bad day

Unfortunately, today was not a good day. Jason and I received a phone call from the hospital at 5:45 this morning letting us know that Brooke had to be put back on the ventilator. Over the last two days, Brooke kept needing more and more oxygen and was all the way up to 100% on SiPAP. There was no other choice but to reintubate her this morning.

In order to reintubate Brooke, they had to sedate her and to do so needed an IV. Brooke's veins have taken a beating and were really hard for them to find. So they had to put the IV in her scalp. Brooke got her first hair cut today and it wasn't a good one. They had to shave both sides of her head in order to get it in.


They later determined that Brooke needed a central line. Dr. Mac, the surgeon, came and put one in on her chest. This will help them administer her medications. They are keeping her sedated while she is on the ventilator because she is so irritated by the tube in her throat.

At this point, she is doing okay. Her oxygen needs are still very high, but she does seem more comfortable now then she has in the past few days. The doctors seem a bit frustrated & perplexed as to what is causing this sudden decline. Dr. Lakser, the pulmonologist, suggested changing her feeding schedule in order to help with her reflux. We are hoping this makes a difference.

The other thought is that Brooke has been working hard to breathe and she is just tired. Her chronic lung disease compounded with the collapsing of her lungs is just too much for her to handle. This resulted in her needing the extra help of the ventilator. Given this theory, they are considering a tracheostomy. The benefit of a trach is that she would be able to concentrate on things other than breathing such as learning how to eat, moving in physical therapy, & sucking on her binky (which she loves). It is a big decision and we will continue to explore it as they do more tests this week.

In addition to Brooke having a tough day, we found out that Owen has strep throat. Overall, not a good day for the Andersons.

Ba Ba Black Sheep...

Owen has been asking to go see Brooke & today he was healthy enough to do it. So we went up as a family and had a great visit! Owen sang Ba Ba Black Sheep to her and held her hand. He also tried to teach her to smile and talked about how she has to get big & strong to come home. It was a great family day!

Eight Pounds!

The most important thing that Brooke can do to get better is to grow ~ so her latest accomplishment seems huge! Brooke is officially 8 pounds now!!

Not much has changed this week. Brooke had a few rough episodes where her heart rate and oxygenation level fell. The doctors originally thought that they may be from one of three things: reflux, bronchospasms, or seizures. An EEG ruled out seizures so they are focusing on trying to help her control the other two. She is cycling between CPAP and SiPAP still and the hope is to get her to be able to stay on CPAP soon.

We are also really hoping for a smile soon! She really seems on the verge of one...

Slowly but surely

Brooke is on the move again, making some progress! On Saturday she was taken off of the ventilator. Since then, she has been on SiPAP and CPAP (steps 3 & 4). She is currently cycling between the two as her breathing gets stronger. But, as has been the case through all of this, we are moving at Brooke's pace which continues to be slow and steady.

Today we had a family meeting with the entire team working with Brooke. We have been so pleased with her care and were equally impressed during the meeting today. The team gave us an idea of what to expect in the coming months. They let us know that Brooke will probably be in the hospital for quite a bit longer, although they can't predict how long. They did say that some babies with severe chronic lung disease like Brooke have been in the ISCU for a full year. Obviously, we are hoping that Brooke is not in that group.

They also told us that Brooke's case has been harder to manage than most premature babies because her chronic lung disease is paired with extremely small lungs, CMV, and diaphragm problems. But the good news was that they don't see any issues in any other areas right now. Her head growth is good, her heart looks good, her eyes aren't getting any worse, and she is processing her food well. They haven't been able to test her hearing yet because of the noise from the machines that she is on for breathing, but she does respond to loud noises and voices. They haven't been able to do a full development assessment on her yet because she has to focus all of her energy on breathing right now. But, for where she is currently, they are pleased.

Overall, Brooke is doing well right now. We were not surprised to hear that it would be a lot longer until she is ready to come home, but are obviously devastated. So for now we are enjoying our time holding her and playing with her when we can.

5 Months Old!

Happy 5 Month Birthday Brooke!!