Jan 1, 2010

It is hard to believe that Bennett and Brooklyn will be 5 months old at the end of next week. We continue to be amazed as we reminisce about the miracles and what an incredible journey this is. Bennett now weighs 10lbs 8oz and Brooklyn weighs 12lbs 3oz. They are both super happy babies (as long as everything goes their way-lol), they smile and talk alot! We are weaning Bennett off his oxygen, we leave it off most of the day and have lowered the setting for the night. God is so good! Bennett has physical therapy once a month, he is doing so well I often wonder why we are even doing it, but its good to have someone following him just to make sure everything continues to be ok. He has terrible reflux, that we seem to have gotten under control- this is such a blessing, it was so hard on everyone getting him to eat. Brooklyn recently started sleeping through the night, 7pm-7am most nights and Bennett sleeps 7pm- 4am, eats and goes back to sleep until 6am, 7 if we are lucky :) Mandy and Sadie adore the babies, Sadie is really helpful when things get crazy. I won't pretend that it is easy, but over all I know that we are unbelievably blessed and remain eternally grateful. Happy NewYear to everyone!

September 18th

Brooklyn came home yesterday. We are very excited and sad at the same time, Bennett was unable to come with her. Brooklyn seems to have adjusted well to the chaos in the house, even with our puppy Tabby barking at her like crazy! Sadie and Mandy just adore their baby sister. Brooklyn is a wonderful baby, she has a great temperament- only lets out one little cry when she is hungry and that's it. Somehow now that Brooklyn is home we miss Bennett even more, I guess its because you really realize what you are missing. Bennett is doing really well and we know he is in the right place for now. He made it another week without a blood transfusion, thank you God! He is still very border line, but seems to be trying to make it through on his own- so they are holding off. Bennett is a fussy little guy, but so sweet beyond words and be assured he is a fighter! Bennett is taking a bottle with each feed and is able to take about 1/4 of his feed that way. We are so grateful for his progress and continue to be faithful that he will get to come home soon

3 weeks old

We can't believe its been 3 weeks since Bennett and Brooklyn were born. We are feeling so blessed to be able to continue to share our testimony with so many people. Every time we engage with a new nurse or doctor about our situation they are astounded by the outcome and can't believe its possible that the pregnancy continued so long and are even more shocked that Bennett survived. We are continually reminded what an incredible miracle this is and thank God for each and every day. Bennett is doing really well today. He is needing more help with his breathing again, which is ok and expected with all the other ways he is using his energy. Ali got to feed him a bottle yesterday, it was his 2nd one. He did such a good job, but tired out quickly. It is early for him to even be starting to try so this reaction was normal with everything he has going on. Brooklyn is likely coming home early next week, which is way ahead of schedule- we are very excited. She is still working on getting all of her feeds down with having any dips in her heart rate. She also needs to pass the car seat test, which she failed last week when we thought she might be coming home early this week. We just can't thank everyone enough for your care and concern. We are faithful that we will have both our babies home soon and can't wait to all be together.

Saturday 29th

Update for the week ending Friday 8/28/09.

Grandma Karolyn was able to hold her grandson (her only grandson!) for the first time.

Brooklyn's feeding tube is gone and she's feeding from a bottle (step 1 toward normal feeding).

Bennett has had his C-Pap mask removed, is breathing on his own except for a small amount of oxygen via a pronged oxygen tube under his nose. This is ahead of schedule and one of the benefits is being able to see his face all the time vs. only when the mask is removed. The true medical benefit is that it indicates his lungs are working properly, and he has learned how to breath properly.

Brooklyn is now feeding from a bottle. Her feeding tube and all of her IV's have been removed. She is able to be held more frequently, responds to our voices (opens her eyes and turns her head). The incubator is GONE! Brooklyn is now sleeping in an open bassinet.

Ali is continuing to recover, the infection is gone, and she is able to get up and around without assistance and is doing great!

Bennett is receiving occupational therapy which is intended to loosen up his arms, legs and body movement. Due to the restrictions placed upon him w/out fluid for 18 weeks, his body was cramped, and squished, unable to move normally. He is doing well starting to move more on his own but, his arms (elbows) exhibit some restriction in fully extending, his legs and ankles need some help as well. The doctors indicate that his condition is likely "temporary" since it is relative to soft tissue and tendons and not related to bone development. We are grateful he is doing so well.

The doctors and nurses indicated from the beginning that Brooklyn would likely come home prior to Bennett, with Brooklyn leaving the NICU near the end of September and Bennett not too far behind sometime in October. As of Friday evening (8/29) Brooklyn is feeding well, sleeping in an open crib and will likely be ready to come home next weekend (4 weeks ahead of schedule).

The parameters for leaving the hospital consist of feeding (suck, swallow, and breathe w/out complications), ability to maintain own body temperature without assistance (i.e. w/out the incubator), and consistent respiration, oxygen saturation, HR and blood pressure.

Brooklyn is positively testing the maintenance of her body temperature and is progressing with feeding.

Bennett will likely be able to feed from a bottle in the next week or two, and will then likely catch-up with his sister.

It has only been a few weeks since their birth, the changes from dire and scary to stabilized and doing well has been an incredible experience. We find ourselves being grateful, amazed, and at the same time calmed as life's other challenges present themselves; having found solace and comfort in the middle of overwhelming uncertainty during the pregnancy and the additional uncertainty and chaos immediately following their delivery, we now find life's "other" challenges less of a distraction and more of a source of resolve and strength.

I find that ironic.....and at times highly amusing. I historically have spent time (probably too much?) attempting to determine what is in store for me and my family. I now spend more time doing and less time arranging. I tried to emotionally prepare myself for Bennett and Brooklyn's arrival and their likely outcomes, bracing myself and attempting to stabilize for supporting Ali.....when they arrived every moment of preparation became a wasted effort.

I find that ironic and when taken lightly, in the right context, it is highly amusing as well.

Progress?

Although the stress, and the emotional and spiritual "molding", and the pressure wasn't exactly what we volunteered for (who would?); we are reminded constantly that this entire process has brought us closer to Him. We are eternally grateful for that.

Maybe that was the goal and intent all along? Or, maybe it is simply the residual benefit of being truly blessed with Bennett and Brooklyn's arrival, and our gratefulness for their current condition?

We feel transformed through the process. The current situation and results are an added benefit.

Thank you to everyone for your support, your thoughts, and your prayers.

Until next week.....(hopefully Brooklyn will be home!)

Sunday August 23rd

Bennett and Brooklyn are conituing to do well and progress!

Brooklyn is gaining weight, and is now at 3 lbs, 12 oz. Bennett is also gaining weight, he is now at 3 lbs, 3 oz. The antibiotics have been completed for both, with no more antibiotics scheduled at this time.

Sadie was able to hold her little sister for the first time today! See pictures.

Ali will be back at the doctor's office Monday morning. They will likely have to re-open the incission in order to cure the infection. We are hopeful that with this proceedure her body can then heal properly and she will be 100% on the mend.

We continue to be amazed at Bennett and Brooklyn's progress. We continue to be amazed on how this whole experience has transformed us, starting back in April when Bennett's condition was discovered and diagnosed.

We are continuing to understanding deeper how truly blessed we have been, as we meet the people (many we did not know, we are meeting now) that have been praying for Bennett, Brooklyn, and our family. Thank you to everyone!

Your prayers and thoughts have meant so much. As a family we are starting to settle down a little (as Bennett/Brooklyn continue to stabilize), and we are stepping back and able to see how incredible this experience has been, and how grateful we are not just for the outcome; we are grateful for the gifts we have been shown along the way.

Thank you to everyone for your support, your guidance and your prayers.

God bless.

Thursday August 20th

Brooklyn without oxygen tubes, or C-Pap, and only one IV!

Brooklyn's CAT Scan results indicate there are no abnormalties and no indication of bleeding. She will not have any additional CAT Scans. She is doing well and continues to stabilized. We are at home now w/ the girls (Sadie & Mandy) and will be back w/ Brooklyn & Bennett around 8 tonight.

Bennett's CAT Scan showed some slight signs of bleeding in his brain. On a scale of 1-4 with 1 being least significant and 4 being most significant, his results were a 1. It is likely that the bleeding along with Bennett and Brooklyn's other challenges is due in part to being deliverd prior to having fully developed. We will watch him close and expect that the condition will repair itself as he continues to develop and stabilize.

The doctors and nurses a PHX Children's and the doctors/nurses at Banner Good Samaritan have all been incredible, beyond anything and everything we expected. We are blessed and fortunate to having such amazing people all around us and with Brooklyn & Bennett 24/7.

"The grace of God means something like: Here is your life. You might never have been, but you are because the party wouldn't have been complete without you. Here is the world. Beautiful and terrible things will happen. Don't be afraid. I am with you. Nothing can ever separate us. It's for you I created the universe. I love you". - Fredrick Buechner

"He gives power to the faint and weary, and to him who has no might He increases strength [causing it to multiply and making it to abound]"
(Isaiah 40:29, AMP)

Weds August 19th

Bennet, Brooklyn and Ali are all doing well.

Bennett's ventilation is now off. He coughed and pulled out the breathing tube which caused some momentary concern but, then he started breathing well.....so the doctor's did not re-insert. Afterwards, with doctors and nurses we all shrugged our shoulders and smiled. That was an odd and scary way to end his respiratory support?Amazing. His clinical condition is getting better. He is now feeding like his sister. The only IV left is in his foot and is at this time for the remainder of his antibiotics (3 more days) and precautionary. His heart conditions appear to be progressing, his lungs are working well, and without the breathing tube he can now cry, which is actually nice to hear.

Today Ali was able to hold him for a little while.

Brooklyn is now on her own having all breathing devices removed, nutritional IV's will be out tomorrow as she continues to go up on her feeding, and her clinical condition continues to show very good progress! She is able to suck on a pacifier which is encouraging in regards to her overall development and part of learning what she needs to do to survive and grow.

Both babies have feeding tubes which in relation to their previous arrangements is fantastic in regards to progress and in regards to our emotions when look at them. The fewer devices and/or support attached to them is welcomed.

Bennett has twice hit the threshold for requiring a blood transfusion but, both times posted better results in the AM which then put the transfusion on hold. We are hopeful that he may be able to avoid having a transfusion all together, which is a significant turnaround from the other day (we were signing paperwork and the doctors were preparing to provide a transfusion).

Both Bennett and Brooklyn will have CAT Scans tomorrow to test for any bleeding in their brains or other conditions. We are hopeful that as they progress overall and as they continue to amaze us, this test will also prove to be consistent with other results so far.

Ali has been discharged from the hospital. She is still in pain from the infection. Each day seems to be a little better. We shuttle Mandy and Sadie off to school in the AM, then head to the hospital to see Bennett/Brooklyn, then back home in the afternoon to pick up girls from school, and then back at the hospital around 5:30 PM.

Tonight is the first night away from the hospital.

Thank you again for all of your support, thoughts and prayers!

Through this entire process starting at week 12 of the pregnancy we feel completed transformed. It continues to be an amazing journey, one that would not have been possible without God's grace and the support from all of you.