Ups and Downs

Wednesday, April 16th, 2008

O.K. So I guess it was unrealistic of me to think that I could update daily. I am going to shoot for every other day or so.

The last two days have not been so good. On Monday evening Brookie was having blood pressure problems and her tummy seemed to be bigger. They did x-rays and found that her belly was filled with air. Dr. Vartanian said that Brooklyn and Aidan were on her radar for having an infection. She said the symptoms are similar to prematurity issues so it is difficult to tell. If they did suspect an infection they would need to test the blood, urine and do a lumbar puncture (LP). They would also treat her with antibiotics before the test results come back because the lumbar puncture takes 72 hours to get the results.

On Monday Brooke was still on the CPAP and Cal was still intubated. Tonight or tomorrow they planned to take Cal's intubator tube out and try him on the CPAP. In order to do this, they do a "sprint" or trial run for an hour to see how he does. This way they do not need to take the tube in and out. Cal tried the sprint today, but it didn't go so well. Maybe tomorrow... We were surprised when we got there to see that Aidan was put back on the CPAP. Dr. Vartanian said they give the kids a medication that lasts up to four days which was helping Aidan on the nasal cannula, but it must have worn off and Aidan couldn't keep up.

Dr. Vartanian also said that Aidan and Brooke have loud murmurs on the echo which most likely means their PDA's are still wide open. Aidan is on his first round/third dose of ibuprophen to close his PDA. Brooke finished her first round and is starting her second. However anytime that they have a set back the treatment needs to be stopped. The WONDERFUL news is that Cal has closed his PDA! Thank God; we needed some good news. There is a possibility that it could reopen, so please pray for him that this is not the case. Cal also had his first bath this evening. He looks so content and squeaky clean. I just wish we could hold him in our arms and tell him how much we love him and how proud we are of him.

This day we also experienced a "not-so-pleasant" nurse. She was abrasive and called two of our kids "bad". She said other inappropriate and inconsiderate things. I won't go into all of the details, but at a time like this I can tell you that that is the last thing that I needed to hear about my little angels fighting for their lives. I was so upset and furious (most likely due to my hormones) with this lady. All in all, when we returned home that evening and I was a mess. Everyone keeps telling me how strong I am and what an inspiration I am. Thank you so much for these positive compliments, but I am anything but strong and inspirational. Paul, on the other hand, is amazing. He is always looking on the bright side and is calm and collected. I lean on him so much and thank God every day that I have such a compassionate husband.

On Monday night at 10:45 pm the NICU called and said that Brooklyn was very lethargic and they were going to do the lumbar puncture on her to test for infection and start the antibiotics. Dr. Vartanian had warned us about this but it still doesn't prepare you for the bad news. Paul and I contemplated going up to the hospital again, so we called back and it turned out the LP was going to take place the following day because her platelets were too low to do the procedure. What a night that was! Everyone tells me to enjoy this time to sleep and get rested up before the babies come home. I can assure that the "sleep" that Paul and I are getting now is FAR worse than the sleep we will get when these precious babies are finally home in their own cribs.

On Tuesday the babies turned one week old! All of the kids had blood transfusions this day. They are taking blood out of them faster than their sweet little bodies can make it. Aidan and Brooklyn are still on dopamine for their low blood pressure. Cal is off of the dopamine; his blood pressure was stable so they also took his arterial line out. YAY Cal! He sure is making progress.

They put Aidan back on the nasal cannula today. He did well in the morning. But when I went back in the evening to visit his heart rate kept dropping and he would brady/desat (which means he forgets to breathe and has to be reminded or he needs someone to pump air into his lungs). Sometimes he self recovers, but other times he needs help. This was very difficult to see as the red light and beeping on his "Giraffe Omnibed" goes off and the nurses and respiratory therapists have to come running in to make sure that he does start to breathe again. This happened many times between Aidan and Brooke this evening. I tried to be strong, but it is just too much for me to take to see them struggling so. I just wish that I could have kept them in longer so that they would not have to endure all of these hardships.

Brooke ended up having the lumbar puncture today. The first time they did it, they did not get any spinal fluid so they had to do it again. It is a good thing that I wasn't there to witness this. Then they gave her morphine and adavan to relieve the pain and she had a reaction to it. Her stats went down really low and she stopped breathing. They gave her three doses of reversal medication to get the morphine and adavan out of her system. They also suctioned out her nose and throat. Our poor sweet little girl! What a rough day she has had.

We also found out today that Cal has pulmonary interstitial emphysema (PIE) mostly in his left lung. This means that there is some damage to his lungs from the ventilator. His airways and sacs develop tiny tears and air leaks out of them into small spaces in the tissues of the lungs. Sometimes the lungs heal over time on their own and other times they may need to insert a chest tube or Cal may develop chronic lung disease. We are praying that his little lungs will heal on their own. He is a tough little guy!

Both Aidan and Cal had their PICC line "dressing" changed today. It is quite a process, but one of our new favorite nurses, Tonya, was taking care of them. She is very loving and I know that boys will never forget her. She takes such great care of them. Nurse Tonya sensed that I needed some TLC as well, so after she changed Aidan's PICC line dressing she let me talk to him, hold his head and give him a soothie (which he actually did very good with). Below there is a video of our time together which I cherish so much. He is an incredible little hero!

Paul called the NICU this morning and there hadn't been any change to the babies except for Aidan going back onto the CPAP. We are anxious to get there today to spend some time with these itty bitties. Tomorrow will be the kids' tenth day of life and they will be doing ultraounds on their heads to check on their IVH's. PLEASE say a prayer that they boys' brain bleeds have resolved themselves.

Paul and I are strongly relying on prayers right now to get us through this. As you can see, in a very short time we have had so many ups and downs. The doctors have told us with three babies there is bound to be something wrong with one of them every day. This is a very trying time for us. Thank you for your support!