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.