Remembering Brooke

Brooke Lynn Anderson 6 month old daughter of Jason and Cynthia nee Faulk died on Friday, August 20, 2010 in the Infant Special Care Unit at Evanston Hospital, Evanston, IL.

Brooke is surived by her parents; brother Owen Anderson; paternal grandparents Charles and Crystal Anderson and maternal grandfather Terry Faulk, she was preceded in death by her twin sister, Lexie Lee Anderson on February 2, 2010, and her maternal grandmother, Mary D. Faulk.

Visitation will take place August 23, 2010, Monday 11 a.m. until 2 p.m. at Donnellan Family Funeral Home, 10045 Skokie Blvd. at Old Orchard Rd. Skokie, IL.

A graveside service will take place immediately following the visitation at Memorial Park Cemetery, 9900 Gross Point Road, Skokie, IL.

http://www.donnellanfuneral.com/

Brooke Lynn Anderson

This morning at about 11:00 our beautiful baby girl Brooke passed away. We are devastated and heartbroken, but comforted by the fact that she went peacefully in our arms. In Brooke's short 6.5 months with us, she has taught us so much about love, patience, strength, perseverance, & courage. She has now joined her sister Lexie in my mother's arms in heaven.

We will be having a visitation and service early next week. We will post the information here soon.

We would like to say thank you to all of the wonderful doctors, nurses, and everyone in the ISCU. Brooke, Jason, and I have considered you our family for the past 6.5 months and can't thank you enough for your compassion, love, and dedication to Brooke.

In lieu of flowers, please send a small donation to the ISCU (Infant Special Care Unit) general fund. The money will go towards helping all of the babies in need of special care and their families.

Send donations to:

Northshore University HealthSystem Foundation
1033 University Place
Suite 450
Evanston, IL 60201
224.364.7200

Please make sure to let them know that the donation is for the ISCU general fund in memory of Brooke Anderson.

Please also ask them to notify Jason & Cindy Anderson that a contribution was made.

Beautiful Brooke

Adorable. Stainless. Fragile. Unique. Stubborn. Fighter. Sensitive. Amazing. Feisty. Special. Charming. Finicky. Gorgeous Eyes. Long Lashes. Strong. Courageous. Lovely...

The doctors have said that most babies would have stopped fighting by now. But not Brooke.

Yesterday was a bad day, the worst yet. At about 10:30 am Brooke's blood pressure started dropping and was really hard for the doctor's to control. Then her oxygen saturation levels dropped. She struggled all day with both, not getting enough oxygen through her body. We started preparing for the worst. But Brooke kept on fighting and midway through the night her numbers started looking a little better.

Unfortunately, she is still struggling. The doctors have given her every bit of support possible. They fear that she might have another infection and are treating her with more antibiotics. They also fear that her pulmonary hypertension is just too much for her to handle and that she is getting tired. There is nothing we can do to stop that.

We are trying to prepare ourselves for the worst while hoping & praying for her to make it through this. We have asked the doctors & nurses to do their best to make sure that she is not in any pain and they have been wonderful. Brooke has truly made an impact on everyone here and is loved by many.

We are staying at the hospital with Brooke. We tell Brooke everyday how proud we are of her and how many people are sending their love her way. Thank you for your love, support, and prayers.

Still Fighting

It's been another rough week for Brooke. On Tuesday, Brooke started to decline again. Tuesday night at 1:00 am we got a phone call telling us that she was being put back on the oscillator. Not only was Brooke having an extremely difficult time breathing, but her blood pressure was extremely labile (fluctuating between high and low values). She continued to be extremely fragile and sensitive throughout all of Wednesday. The doctors were so worried that they didn't leave her bedside throughout the night and morning. Jason and I stayed both Tuesday and Wednesday night in the hospital.

Brooke is still in critical condition, but is a bit more stable now. She has been paralyzed so that she can't fight against the machine. She is getting a lot of sedatives to help make sure that she is not in pain (and as we know, she likes her drugs!). It is clear that the doctors are still extremely worried about her, but are also thrilled that she is showing small signs of improvement.

The doctor's believe that Brooke has pulmonary hypertension. They believe that this is causing her latest issues. The trouble now is that both her heart and her lungs are having significant problems.

The doctors believe that Brooke needs to be moved to Children's Memorial Hospital in order to have a cardiologist watching her 24 hours a day. Unfortunately, Brooke is not stable enough to travel to Children's. Right now, she is struggling with diaper changes and having her head turned. She needs to be off of the oscillator and back on the traditional ventilator in order to make the trip. Therefore the short term goal is to get her stable enough to go on her first field trip. The doctors are hoping that this Sunday she will be ready to move to the ventilator... so here's to Sunday.

Just Keep Swimming

Yesterday, Owen, Jason, & I watched Finding Nemo in order to get some inspiration from Dori. Brooke is once again fighting for her life and it is day to day right now. But she continues to fight and so we are trying to stay strong.

The good news this week was that the staph infection was not found in her spinal fluid. She is on antibiotics and so far it looks like they have the infection under control.

The bad news is that after both of the infections, Brooke's lungs are in bad shape. The x-rays show that they have gotten significantly worse. She is at extremely high settings on the ventilator again and struggling to breathe.

In addition to issues with her lungs, her heart is having issues too. Her blood pressure has been too low all week and so they have her on medicine to keep it up now. This is especially strange for Brooke since she is usually on meds to keep it down. Her ventricles have also gotten larger as her heart is continuing to work extremely hard to pump blood to her damaged lungs. The doctors seem increasingly worried about her heart function. But, Brooke is still fighting.

"When life gets you down do you wanna know what you've gotta do? Just keep swimming. Just keep swimming. Just keep swimming, swimming, swimming. What do we do? We swim, swim." ~Dori, Finding Nemo

SIX months old!!

Happy Birthday Brooke!! Brooke is now officially SIX months old!! She got a couple of presents for her birthday. I finished knitting her a little blankie - it took me seven months and isn't big enough to cover her, but hopefully she will still love it. A huge thank you to Paula Suominen for teaching me how to knit while on bed rest and to Madeline, Diane, & Lynn, the nurses in the ISCU who helped me throughout the process. Another huge thank you to Megan & Mercedes who made her the beautiful birthday poster that now hangs above her bed. Brooke is the oldest girl in the ISCU and her bed is the most decorated!!

The other birthday present wasn't so nice. Brooke came down with a 104.8 fever on Sunday. Her blood pressure kept getting lower and she just seemed really uncomfortable. They figured out that she now has a staph infection. This is only the cause of her fever on Sunday. They do not believe this is what caused the previous week's issues. They caught the high fever quickly and immediately started her on antibiotics. We are hopeful that since it was caught so quickly it will not cause any major problems for her.

Although this wasn't the ideal birthday, we are thrilled that she is now six months old. My perspective has changed on this. A month ago, I was dreading her six month birthday thinking that she had been in the hospital for half a year and I couldn't believe it had been so long. Now I am so thankful that she is still here and still fighting. Happy Birthday Brooke!

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!!

Another step back... time to move forward!

Unfortunately, Brooke's recovery has continued to be tough. On Saturday, she took another step backwards and is on the ventilator again. There are seven steps on the respiratory path:

1- Oscillator
2- Ventilator
3- SiPAP
4- CPAP
5- High Flow Nasal Cannula
6- Nasal Cannula
7- Breathing on her own

Brooke has been as far as step five, but is all the way back on step two now. We are really ready for some forward progress!!

Unfortunately though, she has continued to have a bit of trouble. They took out the chest tube yesterday and it left a pocket of air (pneumothorax) in her chest. This caused her some discomfort over the night and she has needed a lot of extra support with her breathing. The doctors think that they were able to get the air out of her chest and are hoping that this makes her more comfortable.

With all of the latest developments, the doctors are still hoping that forward progress will happen soon. But they have told us that we need to be patient because it will most likely happen very slowly.

Not only are we ready for Brooke to be ready to get off of the ventilator, but she is too! She is old enough now that she is irritated by having the ventilator tube down her throat. Luckily they are giving her fentanyl and as you can see in the picture, it helps her relax quite a bit!!

Typical Brooke...

In typical Brooke fashion she is keeping us on our toes. Unfortunately, last night she had a rough night. At around 5 in the morning Brooke was given some pain medication and had an adverse reaction. Her oxygen saturation level dropped to 19% (should be in the 90s) and her heart rate dropped to 44 (usually around 170-180). They had to bag her and give her chest compressions. She came out of it pretty quickly, but obviously everyone was pretty shook up.

After the episode, she started having some trouble breathing and needed more oxygen. They took some x-rays and examined her. The doctors seemed relieved that it wasn't fluid in her chest cavity from the surgery. They think that when she had the episode, she got some secretions stuck in her airways which are keeping her lungs from opening up. They are trying to help her break up the secretions and cough them up. But it may take her a while because she is still pretty out of it from the surgery.

Unfortunately, due to all of this she has taken a step backwards and is back on the SiPAP machine. the doctors seemed hopeful that once she is able to open her lung fully that she will get back on track.

Thanks to everyone for their continued prayers.

Success!!

Wow! What a day. We have been waiting so long for this surgery... we were all so anxious. We are SO happy to say that it went as well as, if not better than, expected!

This morning at 9:00 we walked Brooke to the OR in the transporter and had to say goodbye. At 9:50, the surgery began and we anxiously awaited the news. At 11:45 we got the phone call... Brooke did great and they were closing her up. Then at 12:30 we were able to talk to Dr. Mak and hear all about it.

They were able to do a thoracoscopic surgery. They cut three small holes on her right side. One was for the camera and the other two were for the doctor's tools. Dr. Mak then took the diaphragm and folded it into itself to lower it, stitching it together in the middle. She was able to give it a natural shape and keep it from being too taut, which should allow it to move. In fact, during the surgery, she saw the diaphragm moving!! Brooke didn't bleed out and her breathing was relatively good throughout with only a few desaturations. Dr. Mak said that her diaphragm was very big, ballooned, and elevated and really feels that this will help her greatly.

After talking to the doctor, we were able to see Brooke. She was pretty out of it and still had the paralyzing agent and anesthesia, but by 1:30 she started to come out of it. She seemed a bit uncomfortable, mostly because of all of the IVs and the ventilator tube in her mouth. They took a look at her x-ray and all of the doctors and nurses were extremely impressed, saying that it was her best x-ray ever. Not only is her diaphragm in a better location, but her right lung has opened up and is much clearer!! This is HUGE ... we are extremely hopeful that this means her breathing will improve soon.

Brooke has continued to do well in her recovery. They warned us that she might have to be on the ventilator for about a week depending on how her surgery went. But, Brooke has surprised us all!! She was taken off of the ventilator this evening and is on the CPAP machine, one step better than where she was before surgery!

Brooke still has a long way to go and her recovery will take a while. She will stay on IV fluids for a bit longer and has to keep a chest tube in for a few days. Luckily, she has an amazing team taking care of her. A special thank you to Brooke's four primary nurses... Mercedes, Hayley, Catie, & Francis... who were all with her throughout the day today. We are so lucky to have you taking care of our baby girl!

Rock Star

Brooke is out of surgery and did extremely well! We will post more details later but wanted to share the good news. We are so proud of our little rock star.

Surgery tomorrow

This time the surgery is on. Brooke is scheduled for her diaphragmatic plication tomorrow morning at 9 am. Please say an extra prayer for our baby girl.

All dressed up and ready for surgery!

Today was a big day for Brooke... she is wearing a dress for the first time! She even has on bloomers :)

Brooke also had a repeat fluoroscopy today to take a look at her right diaphragm and compare it's movement to previous tests. The good news is that it is definitely not paralyzed. Her left diaphragm moves up & down 6 mm and her right diaphragm moves 4 mm. However, it is still too high and blocking her lung from growing. This is called diaphragmatic eventration. The doctor said that her eventration was actually 'quite impressive' because it is so high... not the kind of impressive we want. So, Brooke will be having the diaphragmatic plication next Friday morning. The head neonatologist, pulmonology specialist, and surgeon all agree that this is the next necessary step.

The good news is that Brooke has had modest improvement from the steroids and the reflux medication. The doctors feel that she is in a better place for the surgery. She also is huge now and just passed seven pounds! We hope that this means that she will be able to have a thoracoscopic surgery (through a scope) instead of an incision. They won't know until the surgery, but it would be less invasive and an easier recovery for Brooke if it is possible.

We also got other positive news this week. Brooke has stage two ROP (Retinopathy of Prematurity) and has for weeks. The ophthalmologist checks her eyes every week and it has not increased in severity. This is really good. The doctor thinks that at this point it will not get any worse. And most importantly, it will not affect her eye sight at this stage. We were really pleased to get this news.

Although we are extremely anxious about the surgery, we are once again hopeful that this will really help her. The doctors made sure to tell us that this is not going to be a quick fix. The hope is that moving the diaphragm will give her lungs a chance to grow in the long term.

Luckily, we are getting to enjoy some awake time with Brooke lately. This week is really the first time that Brooke has been alert and playful with us. She even grabbed at a ball, ribbons, and her little bear. Talk about making her mom & dad happy!

You're going the wrong way...

Unfortunately, this is not just a funny movie quote but something I keep telling Brooke lately as she has been taking some steps in the wrong direction. Brooke has really been struggling with her breathing and has been on SiPAP (the CPAP machine plus extra breaths & pressure) all week. Her oxygen needs are higher than they have been in months and her carbon dioxide levels are too high. She is also having some episodes lately where she is really struggling breathing and her heart rate is dropping. All in all, it has been a frustrating week.

Dr. MacKendrick brought in a pediatric pulmonologist, Dr. Lakser, to examine Brooke. Unfortunately, Brooke is a special case and hasn't reacted to treatment as most premature babies with chronic lung disease do. They believe that Brooke has four things working against her: premature chronic lung disease, CMV (cytomegolovirus), her paralyzed diaphragm, and her right lung not being able to grow because of the diaphragm blocking it. This last piece is what they are currently worried about and why they think she is taking steps backwards. They are really worried that she will continue to get worse if her lung is not able to grow.

The team of doctors decided on a four step plan. First, they gave her a virus screening to make sure there was nothing else contributing to her troubles. It came back clear. They then started her on some reflux medication since her reflux had been acting up, but it didn't help her improve. Today, they started her on the steroid prednisone to see if that will help and will give it a week to see if her respiratory needs improve. If not, then the fourth step is to revisit the diaphragm plication surgery. Even though her diaphragm might be getting better, it is usually a very slow process and can take months. Because her diaphragm is blocking her lung and keeping it from growing, she can't wait that long.

So right now, we are really hoping the steroid works. We know that life in the ISCU is a roller coaster, but we are really ready for the upswing. Here's to steroids...

Change of Plans...

No surgery tomorrow!! Yesterday, Brooke had another test (a fluoroscopy) to look at her diaphragm. The results showed that there is a little bit of movement that corresponds to her breathing in and out. When they did the test three weeks ago, there was no movement. The doctors are hopeful that this means that she is getting better on her own! Since the diaphragmic plication is a major surgery and can be pretty tough on fragile babies like Brooke, they think we should wait and see if she continues to get better.

So... here's hoping that she does :) The hard part now is that Brooke will probably be in the hospital quite a bit longer as she slowly gets better and so we are going to have to work on our patience. But, we are thrilled that she might be getting better on her own and are extremely pleased that she does not need surgery tomorrow. They will continue to watch her closely and will repeat another fluoroscopy in 3-4 weeks to see if there is any more improvement. Once again, here's hoping...

And yea Brooke!

Surgery Tomorrow...

Tomorrow is the big day. Brooke is scheduled to have her surgical plication of the diaphragm Friday morning at 8:30am. Dr. Statter from the University of Chicago will be doing the surgery and has been doing this surgery for 20 years.

The surgery is apparently complicated because they have to enter through Brooke's chest due to the diaphragm's location behind the stomach and liver. They compared the diaphragm to the parachutes that kids play with. Brooke's is lifted up keeping her lung from opening fully. What they will do is tie down the middle of the diaphragm so that it is no longer in the way.

Brooke will have to go back on the ventilator for the surgery and will be under general anesthesia. The biggest risks of the surgery are the anesthesia, bleeding, and infection. Obviously they will monitor her very closely both during the surgery, which they anticipate will take a couple hours, and after.

Although we are extremely nervous for tomorrow, the surgery can't come soon enough. Brooke took another step backwards respiratory wise yesterday and needed extra breaths on the CPAP machine. We are so hopeful that this is going to be just what she needs.

Sung to the tune of "You are my Sunshine"
My little Brooke Lynn
My little lady
You are the sweetest I've ever known
Oh my darling
How much I love you
And I can't wait to take you home

Four Months Old!!

Brooke is four months old today!!! Unfortunately, the last week has been a bit rough. Brooke's breathing has taken a turn for the worse and she has backtracked a bit. She is no longer on the high flow and is on higher settings on the CPAP machine again. She also had some heart trouble. She is having PVCs, or premature ventricular contractions. They did a lot of tests on her and found that they are only happening less than 1% of the time. So, although it was very scary for a while, Dr. Young is not concerned at this point and will continue to monitor it.

Some good news is that Brooke is doing a great job gaining weight! She is now 2945 grams which is just about 6.5 pounds! She really seems big :) Because she is almost 3 kilos and has been having trouble breathing lately, they are moving ahead with the surgery on her diaphragm. We don't know all of the details yet, but she is on the schedule for this Friday. We are extremely anxious, but hoping that this surgery will help make breathing a bit easier for her.

Day to day, we have been enjoying more and more typical baby experiences with Brooke. We are now able to help give her baths and she is really alert and awake while bathing her. I also have been puked on a few times (she has reflux) which makes me feel like a real mom. Brooke loves her music and also loves looking at herself in the mirror. The occupational therapists just taught me how to do infant massage and Brooke enjoys having her hands massaged, which is supposed to help her relax. And Owen sang the ABCs to Brooke yesterday... it was a beautiful moment. Even though medically things haven't been going great, we are really enjoying some special moments with Brooke as she becomes more and more alert. We even enjoy her incredibly loud toots... she has been seriously gassy lately!!

Please say an extra prayer this week for our baby girl as she gets ready for surgery. We will keep you posted here ~ thank you.

A Bumpy Road

Brooke's road continues to be bumpy. Unfortunately, this week we have hit a rough spot. We found out that Brooke has a paralyzed diaphragm. Basically, her right diaphragm (the muscle below the lung that helps her breathe) does not work. Instead, it is sitting high in her chest and not allowing her right lung to fully expand. At this point, the doctors are thinking that the only way to help her get past this is surgery. She will most likely be having a diaphragmatic plication in which they tie down her diaphragm so that it is no longer in the way of her lung. It will never work correctly, but her other diaphragm and chest muscles will help her breathe. Although it may bother her for the rest of her life, we are hopeful that it will help her be able to breathe on her own soon.

Brooke is now 2540 grams (almost three times her birth weight) or 5 lbs 9 oz. Unfortunately, at this point they are saying that she needs to be 3000 grams before they will do the surgery. If she follows the same trend this will take her about a month. So, once again, we just have to wait for her to grow big and strong for her to take the next step.

She is still on the High Flow nasal cannula for a few hours everyday. She hasn't been able to do more than that yet, but we are still hopeful that as her lungs get stronger she will be able to do more. Since she has chronic lung disease, the doctors say that it just takes time for the new lung tissue to grow and for her to be strong enough to breathe on her own. But for a few hours everyday we get to see her little face and we really enjoy that!

Brooke is really acting more and more like a newborn lately. She is much more alert and active. She loves her mobile, her binky, and being pat on the butt. We are currently putting together a playlist of music for her and reading her stories so she can hear our voices when we aren't there. If you have any songs you think she needs to hear, let us know and we will add them on!

A GREAT Mother's Day!

Today was a great day! Brooke took the next step towards breathing on her own!! She is now on a High Flow Oxygen nasal cannula. She was put on it this afternoon and so far is doing great! She will be cycling back and forth between the High Flow and the CPAP for a while until she is strong enough to only breath through the nasal cannula. It is another big step in the right direction!

Brooke is also doing really well on gaining weight and eating. She just passed the 5 pound mark and was 5 lbs 3 oz today. She is now eating 55 mL every four hours. We are so proud of our big girl!!

We talked to the doctor a bit about the future with Brooke. He said that it is possible that it could take another 2-3 months before she comes home. He also said that these last few respiratory steps can be the hardest. We are really hopeful that Brooke turns a corner and starts moving a little faster. But, we are still just taking it one day at a time and today was a great day!

Today I thought about my mother a lot too. We did the breast cancer walk this morning and it was beautiful as always. Thanks to the team for walking with us and for all of the generous donations. I know my mother is holding Lexie and looking down on us smiling today... Happy Mother's Day.

Three Months Old!

Brooke continues to make progress, but it is still slow and steady. The good news this week is that she is no longer getting extra breaths from the CPAP machine. So, she is once again trying to breathe on her own and is so far doing well. It is clearly a lot of work for her and she seems pretty worn out from it, but we are very proud of her! The picture is of Brooke taking a quick break from the machine to get her face cleaned up - she sure does look pretty without the funny elephant mask!

Brooke is also improving on her feedings. She has been on continuous feedings for a long time because she wasn't tolerating large feedings. She is now back to 'bolus' feedings and is eating a meal of 40mL every 3 hours. So far she is tolerating the large feedings well. Brooke now weighs 4 pounds 14 ounces... almost 5 pounds! Huge!!

Many people have been asking us lately if we have any idea of when Brooke is coming home. Unfortunately the answer is no, not yet. They say that usually preemies come home around their due date and the girls were due on April 24th. But Brooke needs more time. She has to be able to do three things: breathe on her own, eat on her own, and manage her own temperature. She can manage her own temperature and is making small strides in the other two areas. She has three more steps to breathing on her own after the CPAP machine. After she is off of the oxygen, she will start working on eating from a bottle. It is apparently very hard for preemies to breathe, suck, and swallow at the same time so she won't try bottle feeding until her breathing is much stronger. So, we have a long way to go.

Brooke is truly moving slow and steady... but as we know, the tortoise wins the race.

Thank you!

Today was the March of Dimes walk and a group of us walked in honor of Brooke & Lexie. A huge thank you to the entire team and to all of the people who donated. We have raised over $2000 and are so touched by everyone's generosity!

Baby Brooke continues to fight and gets stronger everyday. She is still getting both oxygen support and extra help breathing through the CPAP machine. But her settings have improved a bit in the past few days and her breath sounds are getting better. She is also eating more lately and is now 4.5 pounds!

Thank you to everyone for all of your love and support.
In the words of a good friend,
Love, Hugs, & Good Health

Beautiful Baby

The other day during bath time, one of Brooke's primary nurses, Hayley, took some pictures of Brooke. For the first time we are able to see her beautiful face!! Hopefully soon we will get to see it everyday!

Unfortunately, on Friday they took an x-ray of Brooke's lungs and they had gotten worse - parts of her lungs were collapsing. Her breathing also didn't sound very good. They decided that she needed a bit of help with her breathing again. Brooke is still on the same CPAP machine, but they are now giving her 20 breaths per minute in addition to what she does on her own. The good news is that she is not back on the ventilator and hopefully will never be.

In other news, Owen and I went to the Cubs game this week and he is a huge fan! He hasn't stopped yelling "Go Cubs Go" and now wants to go everyday.

She did it!!

Today was a HUGE day! After 10 weeks, Brooke is finally off of the ventilator!! She is now on a machine called CPAP which stands for Continuous Positive Airway Pressure. Basically, Brooke is breathing on her own for the first time, with the help of pressurized oxygen coming through her nose. It is quite the head gear, but this is a really positive move!

Jason and I have tried to remain patient and positive through all of this, but recently had been getting frustrated by lack of progress. We were very pleasantly surprised yesterday when Dr. Allgaier said that Brooke was telling him she was ready to come off of the ventilator by how she was responding to her latest settings. They pumped her full of steroids to get her ready and this morning at 10:30 AM she made the switch. Now, almost 12 hours later, she is still on CPAP and doing great.

The doctors have let us know that it is not unusual for babies like Brooke to need more help breathing in the next few days. She is working very hard to breathe on her own and they compared it to running a marathon for the first time, completing it, and then being asked to run another one the next day. Obviously, she has a lot of work to do, but this is a huge first step and we are all feeling great. In fact, Owen, Jason, and I headed to Dairy Queen to celebrate with our first blizzards of the season!

The other BIG news is that our little girl has just passed the four pound mark... she is really growing big & strong!!

March of Dimes

The March of Dimes walk is being held on April 25th this year... the day after Brooke & Lexie's due date. We had hoped that we would be bringing Brooke home that weekend, but unfortunately she is not quite strong enough yet. Instead, we will be walking in honor of both girls in the March of Dimes walk in Chicago.

We would love to have you join us in the walk... it is a cause that is obviously very close to our hearts right now. Here is a link to our team page if you would like to join us or donate. Our team's name is Brooke & Lexie.

http://www.marchforbabies.org/s_team_page.asp?SeId=1415739

A few people have also asked me if we will still be doing the Mother's Day breast cancer walk. We definitely plan on it - it has been a Faulk family tradition for a long time and has now grown to include a lot of close family and friends. We would love to have you join us for that walk also. Our team's name is Team Mary and here is the link:

http://walk.networkofstrength.org/Page.aspx?pid=1397&frtid=5441

As for an update on Brooke, not much has changed. A few more ups and downs with her breathing, proving that she is not yet ready to come off of the ventilator. We also found out that she has stage one ROP in both eyes. Other than that, lots of snuggling, singing, and love! She is becoming more and more active and alert which we are really enjoying!!

Happy Easter!

Two Months Old!

In order to leave the ISCU, Brooke has to be able to do three things: breathe on her own, eat on her own, and maintain her own temperature. She has a long way to go on the first two, but is doing great on the third. In fact, she was just moved to a big crib and is no longer in the incubator!

Brooke had an eye exam on Tuesday and unfortunately she has stage one ROP (Retinopathy of Prematurity) in her left eye. Apparently it is very common for premature babies to get ROP and stage one is the earliest stage. Hopefully, it will go back to normal on it's own. She will continue to get eye exams every week so that they can watch this closely.

The daily battle continues to be her breathing. This week they have lowered her ventilator settings a bit and so far she is doing well. We are extremely hopeful that this week will be different and she will be able to come off of it soon!!

Little Miss Independent

Today we got some good news! Since Brooke is eight weeks old today, the doctors are a bit concerned that she is not making better progress with her breathing. They did a head ultrasound to check and see if there were any neurological problems. Her ultrasound was normal - we are so relieved! They may do further checks later with an MRI or CT scan, but for now we are thrilled.

On Friday, Brooke started on some antibiotics for a possible respiratory infection. The medicine seems to be helping and her ventilator settings have been getting better. We are hoping for more small improvements every day. On Saturday, she pulled out her ventilator tube again! She sure is showing her independence ~ if only she would remember to breathe when she pulls it out!!

Feeding wise, Brooke is doing well. The doctors told us on Thursday that she is 'fragile' and that they have to monitor her closely. They started her on continuous feeds and she is getting 10 mL every hour now. She seems to be liking this a lot better and is processing all of her food. And she is getting big - she is now 1635 grams or 3 lbs 9 oz.

Tomorrow, Brooke is getting an eye exam and they are lowering the pressure on her vent. Here's hoping for more good news!

A mind of her own

After our last post, things got a little crazy for our little Brooke. Unfortunately, both her left and right lungs collapsed on Sunday. Since then, things have gotten a little better and they have been making little adjustments on the ventilator. The doctors were hopeful that they might be able to get her off of it soon, but she seems to be working on her own schedule and just isn't ready yet. We are trying not to be too frustrated and just go with the flow... sometimes not that easy. But as all parents quickly learn, we are not really in charge!

Brooke also stopped tolerating her feedings on Sunday and so they stopped feeding her for a couple of days. Today she was back on full feeds (26 mL) and so far so good. The doctors still say the most important thing is for Brooke to grow so her lungs can get bigger. So food is good!

Not much else is newsy for our little lady... still more of the same. Just waiting for her to grow big & strong!!

Slow and Steady

With all of the ups and downs of life in the ISCU, we are pleased that during the last few days Brooke has been holding steady.

Last time we wrote, the doctors had diagnosed Brooke with RSV and moved her to isolation. After a few more tests, the infectious disease doctor decided that the first test was a false positive and that Brooke does not have this virus. So, she moved back to the normal ISCU room with her friends from before.

Over the last two weeks, Brooke was having a really hard time processing her food. But, she is back to eating 26 mL every three hours (almost an ounce!). She is doing a good job processing her food and the doctors are very pleased to have that back to where she was before.

As for her lungs, not much has changed which is a bit frustrating for all of us. We are really hoping to get her off of the ventilator soon, but realize that we are working on her schedule and not ours. Brooke has Chronic Lung Disease which means that it may take a little longer to get her off of the ventilator. Her right lung was a bit collapsed this week, but this is apparently normal with CLD and they are watching it closely. She is on two medicines that will hopefully help her; one to get rid of the extra fluid in her lungs and one to remind her to breathe. Both good things!

The other news is that Brooke is wearing clothes and getting swaddled! I got to hold her the other day all wrapped up and it was wonderful.

THREE Pounds!!!

Just a quick post to tell you the big news... Brooke is officially 3 pounds as of early Friday morning!! She is eating again and her feeds are slowly getting bigger. So she will hopefully continue to gain weight! It may be a small milestone, but we are thrilled for our 'big' girl!!

She's Feisty!

Well, Brooke continues to keep things interesting! Yesterday, she pulled out her ventilator tube!! They tried to put her on the CPAP (Continuous Positive Airway Pressure) but unfortunately, she wasn't breathing well enough on her own. So, they had to put her back on the ventilator. But, she got a new clean tube that is a little bit bigger and fits her better. I guess she told the doctors what she wanted - she sure is feisty!!

We also found out yesterday that Brooke has RSV, Respiratory Syncytial Virus. This is unfortunately a really contagious virus and so Brooke has been moved to isolation. She now has her own room and when we visit, we have to wear a mask, gloves, and gown. There is no treatment for RSV, we just have to wait it out like the common cold. Dr. Caplan thinks this is another reason why she wasn't ready to come off of the ventilator.

Brooke is also still having some digestion/intestinal problems. On Sunday, she didn't process over half of one of her feedings. She also had a high white blood cell count, so they worried about her having an infection. They put her on two antibiotics and stopped feeding her. Unfortunately, since she has had so much trouble eating lately, she has been losing some weight. But, the doctors say that the best thing for these issues is rest and so that is what she is getting.

The good news in all of this is that even though Brooke keeps having more hurdles to get over, she keeps fighting. She seems to have had a lot thrown at her, but so far she is staying strong and none of it has become too serious. She is a strong, feisty little lady!!

The roller coaster continues

Brooke had another up and down week... but we are back on the upswing!

On Tuesday, I was visiting Brooke and changing her tiny little diaper. Unfortunately, there was a bit of blood in it. The doctors immediately did an x-ray and blood test and told me that they take this very seriously. They were worried that it might be NEC, necrotizing enterocolitis, which is the death of intestinal tissue. They quickly found out from the x-ray that it is not a severe case of NEC. The blood test showed that she was only showing one possible indication of it, an increased level of her CRP (C-reactive protein). So, they stopped her feedings for 48 hours and continued watching her closely with x-rays and blood tests. Early this morning, they started her back on feedings and she should be back up to 23mL tonight! Her CRP levels are still elevated, but Dr. Caplan thinks that it might be related to her lungs instead. They will continue to watch her very closely, but we are all feeling much better about things today.

We got the results of the echocardiogram from earlier this week. Brooke's PDA or ductus is slightly open. This is not clinically significant, so at this point it is nothing to worry about. However, it is again something they will continue to watch.

This morning, Brooke had another ultrasound to examine her diaphragm. Since the right one is higher than the left, the doctors were worried that it might not work. But, good news ~ it does! It is a bit weaker than the left diaphragm so they will continue to watch it, but at this point they are pleased that it is functioning correctly.

And again we are hopeful that Brooke will be getting off of the ventilator soon. They started lowering the settings again today and she was tolerating it well. Hopefully, they will continue to wean her off of it and will be successful this time!!

Brooke is one month old!

A big day today ~ Brooke is officially one month old! And overall it has been a good week. Brooke has been 'putting on the ounces' this week. She now weighs 1250 grams or 2 lbs 12 oz and is 14.5 inches long. She is eating 23 mL of milk every three hours now. And they are adding extra calories to every feeding to help her get big and strong.

Brooke had an eye exam with the ophthalmologist on Tuesday and her eyes look even better than before. They have no signs of the CMV infection and are not hazy at all. This was great news!

Most of the week she was doing great with her breathing. But as the week went on, she started to have a little trouble. Her carbon dioxide levels have been a bit high, so they had to increase some of the settings on the ventilator. We had been hoping that she would be able to come off the ventilator soon, but it is now clear that she is not ready yet.

Yesterday, Brooke also had a little trouble with her blood levels and was a little pale. Her hematocrit was low which has to do with her red blood cells and oxygen. She had to have another blood transfusion and today was doing much better.

On Friday, they heard a heart murmur and today Brooke had an echocardiogram. We haven't heard the results yet, but the doctor said that he wasn't worried. So, we are trying not to worry.

They also noticed a potential problem with her diaphragm. Her right diaphragm is a bit higher than her left which could mean that it is not functioning correctly. They did an ultrasound today, but it was inconclusive. So they are going to do some more tests on her later this week. It is possible that this is contributing to some of her breathing problems, so we are hoping that it all gets figured out soon.

The last test that she had today was a head ultrasound. There were still no signs of damage from the CMV - we were thrilled! The doctor did say that she may have an enlarged ventricle, but that at this point it is nothing to worry about.

We continue to be amazed by all the prayers and support. A special thanks to my Highcrest Family who have been incredibly supportive and generous!

Happiest on her belly!

Everyday we continue to get more news, both good and not so good. On Wednesday, we found out that the CMV (Cytomegalovirus) is in Brooke's lungs. This will hopefully not cause any long term damage, but does mean that she will probably be on the ventilator longer than we had hoped.

In good news, we found out yesterday that her ductus has closed! This is great news because she is able to get off of that medicine. While she was on it, she wasn't able to eat and was definitely frustrated by that. So today they started her back on feedings and she seems happier again. They are increasing her feedings to 14mL, so hopefully she gets back to gaining some weight.

Her lungs have been working hard over the past few days. One of the main ways we measure if she is doing well is by the saturation of oxygen in her lungs. Ideally, the number is over 90%. She has had some trouble staying at that level this week and had her biggest 'desat' - all the way down to 10%. They made adjustments as necessary, including giving her another blood transfusion and lots of extra oxygen. Today she is doing much better and seems more comfortable. One of the ways they get her to the optimal saturation level is by putting her in different positions. She is definitely happiest when she is on her belly with her little butt up in the air! So cute!!

Growing big and strong!

Brooke just keeps on growing and they have been able to increase her feeds to 11 mL every 3 hours. She is now 1050 grams (2 lbs 5.5 oz), which is 200 grams above her birth weight. Both Jason and I thought she looked a lot bigger today... she is really filling out! I added some pictures today so that you can see how she is changing.

Unfortunately, there is some not so good news too. Brooke's ductus venosus has not closed. The ductus venosus is in the heart and is open in the fetus to help with getting oxygen where it is needed. However, it is supposed to close after birth and Brooke's has not yet closed. This is apparently common with premature babies. Brooke begins medicine today to help close the ductus which will hopefully work so she doesn't have to have surgery.

Brooke also had an eye exam with an ophthalmologist today and he did not see any effects of CMV in her eyes. So, this was good news.

As for her lungs and breathing, she is still fighting. They are making adjustments to the ventilator hourly. They did have to start massaging her lungs every 6 hours to make sure that the oxygen is saturating the sacs fully. Dr. Derrick said today that closing the ductus venosus may help with her lung function because it will correct the flow of oxygenated blood. Here's hoping...

Two steps forward, one step back...

Everyone describes having a child in the ISCU in this way... a roller coaster ride where we will take two step forwards and one step back. Unfortunately, Brooke is going to have a long ride.

Good news first... Brooke has gained some weight. She is now 950 grams, which is almost 2 lbs 2 oz. They are increasing her food everyday and later today plan on giving her 6mL for the first time. She isn't always processing all of her food, but is processing most of it and keeps on pooping... definitely a good sign.

As for her lungs and breathing, she is pretty much the same. They are really hoping to get her off of the ventilator soon and keep making adjustments to the pressure, rate, and oxygen level to try to get her there. Unfortunately, her lungs are still a bit too small, but Dr. Derrick said we need to see her grow and we are starting to see that finally.

Now onto other news... We got some findings back from Lexie's autopsy. The main cause of her death was the size of her lungs. At 28 weeks, a baby's lungs should weigh 25 grams. Lexie's only weighed 9 grams, so about a third of the size they should have been. Additionally, they found that Lexie had a virus called CMV, Cytomegalovirus. This was important because we had Twin to Twin Transfusion Syndrome which means that Brooke probably has the virus too... and she does.

The virus isn't something they would have tested for in Brooke because she wasn't showing some of the main signs. Her head ultrasounds at 3 and 7 days had been clear. However, she does have a low white blood cell count and an enlarged spleen, both signs of her trying to fight off the virus. I talked with both our neonatologist, Dr. Derrick, and the infectious disease doctor, Dr. Schrantz, yesterday. They have decided that the best course of action is to start treatment for the virus through her IV. This medication will last for the next six weeks.

The main risks with this virus are to Brooke's hearing, vision, and cognitive development. Dr. Schrantz said that studies have been very positive using this medication in premature babies. We are once again hopeful.

Now to end on a positive note... I got to hold Brooke... twice. It was amazing. She is finally off of the Bilirubin light and doesn't have to wear the eye mask anymore. So we can see her face a little more and can now hold her every few days :)

Holding Strong

It's been a tough week on the Anderson family, but we are pleased to say that Brooke is holding strong. She is definitely up for a fight and has had a busy week, but we are extremely pleased with the care that she is receiving in the ISCU.

As we have mentioned, one of the biggest concerns with Brooke is her small lungs. She is still on the ventilator, but her levels of oxygen have gotten better through the week. She is still having some trouble getting all of the carbon monoxide out, but they are constantly monitoring it and adjusting the ventilator as necessary. They have done a lot of blood tests on her throughout the week and so she needed a blood transfusion yesterday. But, she has reacted to it well so far.

On Thursday, Brooke finally started eating (1 mL at a time). She has had a bit of difficulty processing the food so far, but did poop once - we were very excited!! Brooke was 850 grams (1 lb 14 oz) when she was born and has lost a bit of weight. She is now 780 grams (1 lb 12 oz). It is normal to lose a little weight during the first week, but we are anxious to see her get a little bigger.

As for the rest of us, we are at home together again. I came home on Thursday and being home with Owen & Jason has definitely helped us all. On Saturday, we had a nice, small family ceremony for Lexie. Jason & I truly feel loved and supported by our family and friends and thank you all for your continued prayers for Brooke.

Thank you...

Thank you to everyone for their love and support. Brooke is still stable and fighting hard. She was actually taken off of the oscillator today and put on a normal ventilator which is a step in the right direction.

A few people have asked how they can help. In lieu of flowers, please send a small donation to the ISCU (Infant Special Care Unit) general fund. The money will go towards all of the babies in need of special care here, including Brooke.

Send donations to:

Northshore University HealthSystem Foundation
1033 University Place
Suite 450
Evanston, IL 60201
224.364.7200

Please make sure to let them know that the donation is for the ISCU general fund in memory of Lexie Anderson.

Please also ask them to notify Jason & Cindy Anderson that a contribution was made.

Thank you again for all of your support. Our little Brooke has a long fight ahead of her and we are going to need all of the thoughts & prayers for her.

Lexie

Early this afternoon our baby girl, Lexie Lee Anderson, passed away. Jason and I got to spend time with her and hold her at the end which we treasured. Despite her best efforts, her little lungs just weren't strong enough to get oxygen to her body. As with our entire experience, the doctors and nurses were incredibly compassionate and wonderful.

We are extremely saddened in the loss, but I let Lexie know that she was in excellent hands as she is now being held by my mom in heaven. We are comforted by the fact that both my mom and dear friend Kindra are watching over her now. We also feel very fortunate that we were able to have her baptized last night with the family and that she is now with God watching over her sister Brooke.

We do not yet know all of the details for the service, but will be having a small gathering for immediate family only. Please continue to send all of your love and support to our little girl Brooke who still has a long and hard fight as she has many of the same issues as her sister.

We made it through a rough night...

So Brooke & Lexie have officially made it through a full day! Unfortunately, it has been a rough day for them. Both girls are around two pounds and 13 inches long. They also both have really small lungs for their size and age. Unfortunately, this is causing some problems.

Last night, we got a call at about 1:15am from the doctor saying that Lexie was really struggling. She had been having trouble getting the carbon dioxide out of her lungs, but it then turned into an additional problem of getting oxygen in her lungs. They eventually found an air pocket next to her right lung that was stopping her lung from expanding. They had to put a tube in her side to drain the fluid and excess air and this really seemed to help her. We were extremely scared that she wasn't going to make it through the night. Aunt Becky, Aunt Jenny, Papa Terry & Annie came out and we had Lexie baptized. It was beautiful.

Brooke seems to be in a more stable condition. They are still worried about her lungs and are watching her very closely, but they have been able to keep her oxygen intake more steady. This morning, I wished both girls a happy birthday (1 day old) and they were both still fighting. Dr. Derrick is still watching them very closely and making adjustments as necessary to make sure they are getting as much oxygen as possible.

We definitely need your love and prayers for our baby girls. The doctors have said that this is going to be hour by hour, day by day for a while. But they are fighters and we are all trying to stay strong.

Lexie and Brooke have arrived!

Early this morning Cindy began having contractions. We have seen this in the past but the contractions progressed quickly in terms of frequency and pain. We had hoped to have a meeting with our doctors this morning but our girls had other plans! We were quickly moved to the operating room where an emergency c-section was performed. As usual Cindy was checking on everyone, (the babies, her dad, sister, Lindsay, Mandy, and me.) The c-section was quick and our girls were delivered at 8:40. Cindy is in some pain, but is doing well.

Brooke and Lexie are fighting! They both have dark hair and Cindy and I were both able see and touch them briefly. We have had a chance to talk with the doctor and both girls are on the small side for 28 weeks and both are probably more on the severe side in terms of overall condition because of their small size. The biggest concern at this point is the size of their lungs. They are on special ventilators that pump over 100 "breaths" a minute to help get them more oxygen. At this point we really don't know much more other than they are working hard and have a difficult road in front of them. Cindy and I are staying positive and appreciate all the support.