Wednesday, September 29, 2010

Day 134

I have attempted to update the blog several times over the past few days. I find myself at a loss for words or news on where we stand. Honestly we don't know. Bella is back on cpap, almost as soon as I typed the words in the last post saying that she was on high flow cannula for now we got the news they had to switch her back to cpap. She is still requiring 100% oxygen from that as well. She has been extremely tired and working hard to breathe over the last few days. Today she seems to be more alert and comfortable. We hope that continues. It seems that we are back to "watch and wait" and I am reminded again to turn it over to the Lord.

It also seems that we are in need of another care conference with our doctors to give us an idea of what our options may be from here. We have heard the term "trach" over the past few days for the first time regarding Bella. I have started research on this and feel like while we are not quite there yet, we should start prayerfully considering this option. Here is some info on this procedure:

"A tracheostomy is a procedure that creates an opening through the neck into the airway through which a tube is placed. The tube, called a tracheostomy tube, allows air to flow into the lungs and allows the airways to be suctioned.

In preemies, tracheostomies are usually performed when premature babies cannot breathe on their own for long periods of time. Tracheostomies allow patients to be mechanically ventilated without a tube in their mouth or nose, and allow mechanical ventilation to stop and start more easily. Tracheostomies may also be performed when babies are born with conditions that make breathing or clearing the airway difficult or impossible. "

This procedure would allow us to bring Bella home sooner. It could be removed once her condition (lungs) improves, which would hopefully be in a few years. Personally after doing my homework on it I am not as scared as when I first heard of it. It requires much more training on our part on how to take care of her and some homehealth nursing but I know God isn't going to ask us to do anything we are not capable of doing. I would do anything to see her breathe comfortably and continuously so if that means bringing a little portion of the NICU home with us to get her home then so be it. But like I said I don't think we are there yet however as soon as I finish writing this blog the news could change....Another struggle with the idea of the "trach" is that we would have to have Bella transfered to Vanderbilt Children's Hospital- the place that refused to try to keep me from going into labor, the place that gave me the option to abort her but no option to save her, the place that took 7 hours to get an ultrasound done when I had gone in thru the emergency room with preterm labor signs.... This is yet another step in our faith journey that we will have to take, we will have to walk forth in comfort that the Lord walks before us AND I will have to be there with her 24 hours a day while she is there. I know some wonderful people that work at Vanderbilt so I hate to "bash" that hospital but I am certain had they been in my position they would also be hesitant.

In preparation of a hypothetical move to Vanderbilt I am organizing medical information on Bella's history to date. I am reminded, amazed and completely gracious for how much she has overcome in the past four months. Looking at this list of everything she has been thru takes me back to the moments after her birth when we did not know she was even alive, to the weeks after that when we did not know if she would make it and it brings me back to now. Where I sit here today as a mother that has been given the blessing of holding, feeding, bathing and caring for this precious, beautiful girl that was given a 5 % chance of survival. We will continue down the path that God has set for us, we will continue to pray, we will continue to believe and she will continue to be the greatest gift we have ever recieved.

We are also still praying for my Aunt Daisy in Memphis, who is still on the ventilator and showing little improvement and for Maddie, who is still at Vanderbilt Children's Hospital fighting a bacterial infection in her blood stream and the many complications that come along with that. I pray that the families of both can close their eyes as I have my own and feel the powerful peace and warm embrace of a wonderful God.

Much love to you all


Sunday, September 26, 2010

Sending up prayers for many this Sunday...

We ask all of you to keep the following folks in your prayers.

My Aunt Daisy who is in critical condition in Memphis. One of her lungs has collapsed, she has been on the ventilator for 5 days and is showing no signs of improvement. We send our love & prayers for her, my Uncle Charlie and cousins Neal & Chad. My mom is there with her now as well. She is so very loved and we just pray to see her make a turn around here.

We also pray for a little girl named Maddie whom is at Vanderbilt Childrens Hospital. She was a former preemie at Centennial, has been in Vanderilt dealing with some preemie related issues and has contracted a bacterial infection in her pic line. The next 12-24 hours are crucial. We just pray for this little girl who has fought so hard to get so far. We pray for her amazing family that has stood beside her every step of the way.

Lastly we are praying for Bella...she has required 100 % oxygen for the past several days & seems to be working harder to breathe. She is still on the nasal cannula for now. We think we are seeing some rebound from the decrease in steroids. We should see the rebound peak here so we are praying that she doesn't regress too much more before this happens.

The power of prayer...we are living it and believing in it more than ever...

Much love to all

Wednesday, September 22, 2010

Day 127

Well Miss Bella is officially 2 days old according to her original "due date" as of Monday. We have had many celebrations that have kept us from updating the blog since the last post.

On Saturday we celebrated the upcoming birth of Carson, one of my best friend's little one, that we will get to meet in November! We also celebrated the marriage of our good friend's Stephanie and John. I personally have had little interaction with anyone without medical training or over the age of 3 years old, so some time out with good friends was a welcome break.

On Sunday our INCREDIBLE staff at Centennial arranged a due date party for Bella where Dylan got to meet his little sister and assist with giving her a bottle. We had all of our family including both grandmothers and aunt under one roof and I have to tell you it did my heart and mind good! Nurse Susan snapped lots of photos for us which I will be uploading in a future post when I have more time. Watching Dylan & Bella interact for the first time will be a moment I remember forever. He is such a proud and compassionate big brother, I could not be more proud of him!

On Monday I finally got to meet up with a fellow preemie mom who has been a huge source of inspiration thru her blog and amazing 23 weeker preemie. An hour of chatting with her was amazing therapy and makes me realize the many rewards we will reap from our journey in the NICU.

Now on to our little rockstar! Bella is holding tight on the high flow nasal cannula. She is still bottle feeding. Today the order was written for her to bottle feed 6 times per day. We are going to take this as it comes and not push her too hard. Her saturations are a little rockier today so I want to make sure we aren't over doing it. She is also going to get hydrotherapy from Miss Tasha 3 times per week. She loves it! We practiced infant massage on her back today. I really believe in this therapy and can see vast improvements already. Bella is weighing in at 4 pounds and 12 ounces today. She has been moved to a big girl crib and I can hold her easier and more often now! They decided to continue on a small dosage of steroids this week so we still have to see what the rebound effects will be. We have no idea where we are in our journey here, how much longer we will be in the hospital SO we are just truly enjoying each day and moment as it comes and all that it holds. We will get there some day so we don't want to miss out on today trying to get to someday. God's grace is sufficient!!

Again thank you all for your continued prayers and support!

Much love to all

Friday, September 17, 2010

Day 122

Well the past 2 days with Miss Bella have been very rewarding... She tried to bottle feed for the first time yesterday. Our expectations were low for the first time but she did it AND did it better than we could have hoped! She LOVES her bottle and more importantly her food. She had an evaluation today to make sure she was doing it correctly and to get the okay to continue. She finished the whole bottle today and did excellent! She can now bottle feed once during the day and once during the night. I had never really thought about how much it takes to eat and breathe but she can do both for now so that is huge!
Today Miss Bella also got to try hydrotherapy with Miss Tasha. It was spa day! She sat in a nice warm bath with bubbles and I got to give her infant massage. She was a little skeptical at first but she sure got use to it and again responded great! We will do this therapy twice a week on Mondays and Fridays. I can't wait to post the pictures of the progression of this! I have tons of new photos of our beauty but we have had to relocate for the past few weeks and I don't have the things I need to upload. The relocation story is a whole new blog...We will get back to that one :)
Tomorrow Bella begins to taper off of the steroids so the true test of her progress remains to be seen. However this time we go into it knowing the possibilities and carrying with us the experiences of the past few days. I hope to make it thru this "rebound" with full faith and trust in God's plan and with gratitude for the blessings that we have already received.

Much love to you all

Wednesday, September 15, 2010

Day 120- Happy Neo-Natal Nurses' Day!

We learned early on that our nurses in the NICU are not there for a job or career, for most it is a calling. A calling to nurture, to heal and to support these families that are going through one of the hardest times in their life. Aside from our faith the staff at Centennial has come to be our rock. Our primary nurses who voluntarily signed up to care for Bella on good days and bad, not knowing what the outcome of our situation may be any more than we do but standing beside us each step of the way. The other nurses that stop by to check on her even when they don't have her as a patient. They have become our NICU family, our mentors, our friends and the most trusted baby sitters a person can find. We also learned early on that if you want to walk out of there each day and leave your child behind you must trust those providing her care, we are so blessed to say that we have found that. We can lay our heads on our pillows at night and sleep knowing that no matter what, Bella is getting the best care that is out there. So today I say thank you to each one of you that loves Bella as your own, that works 12 hour days, that lifts me when I am down, that gives us the honest truth no matter how good or how bad and that is using your God given gifts to better the lives of so many. Thank you from the bottom of our heart. Each of you have made me look at my career and ask am I fulfilling my calling. You have changed us and no matter what our future holds each of you will always hold a special place in our heart and memories. Happy Neo-Natal Nurses Day to each of you!

Bella is celebrating this day on the high flow nasal cannula and loving it. The Dr says lets ride the wave and see where it takes us so while she is on the upswing it is worth a shot. Again we don't know what the story will be when she starts to rebound from the steroids but we sure are enjoying what today brings. She is on 70% oxygen now and again if she can stay calm she does well. It is a good day surrounded by good people!

Much love to you all

Tuesday, September 14, 2010

Day 119

Well the past few days have brought many blessings for us and Bella. They surprised us with an extabation of the vent on Sunday morning. Bella has been holding strong with assistance from the cpap machine since then. She is being weaned from her nitric oxide for the pulmonary hypertension. She will be off by morning and hopefully the medicine will be sufficient this time. She is on 70-78 % oxygen. She is receiving a low dosage of steroids every 24 hours now. The Dr on this week says she will discontinue those after 7-10 days as she has had such a quick response that she feels it is hasty to say that she will need chronic (continous) doses just yet. We feel much better about this plan. If she starts rebounding after they stop then we will just start the process over. As the Dr says we are on Bella time & she (I prefer to think God) is writing her own story. So only time will tell. We are ecstatic and hopeful yet we learned the hard way not to get our hopes up just yet. She weighs 4 pounds and 6 ounces now. She is absolutely the cutest thing you have ever seen in her little outfits. They have also written the order to move her to a crib once she is off the nitric and one is available. She will hopefully leave her little home in the isolette sometime soon. She is enjoying crib toys & music now as she needs more stimulation as we get closer to her due date which is September 20th. I will be bringing in a swing this week to try out as well.

So we continue to watch, wait, pray and enjoy this time while we have it. And we trust that no matter what tomorrow brings God doesn't have a Plan B...

Much love to you all

Saturday, September 11, 2010

Day 115

I have been praying all week for peace.

It came today.

It came suddenly and so purely that I am awake at 4:30 am ready to see what this day brings, ready to take my next step trusting in His plan (even though I don't fully understand it). His peace started filling me today while visiting Bella. I have said before to look into her eyes is to see the power of God's almighty hand. It held true today as she was bright eyed, alert and truly engaging all of us with her beauty.His peace came as I held her, bundled up tight, smelling like only newborn babies can smell. His peace came in the company of a mentor that told me "God does not have a plan B." His peace came on the ride home when I smiled, really really smiled for the first time in days. His peace came when I reached to turn up the radio & sing at the top of my lungs. And He made his grand finale when I pulled into the drive way to see a big beautiful rainbow over the top of the house. A symbol of hope, not hope that Bella is going to make a full recovery as I think she should but hope that no matter what, no matter what the plan may be He will never leave us or forsake us.

Bella is making some progress the past few days. She is now on 75 % oxygen instead if 100 %. Her blood gases are better. She is definitely feeling better over all. We have a ways to go as she is still needing some high pressure settings from the vent but we will get there.

Thank you all for the many many prayers. I can say confidently and without a doubt that we are truly truly blessed.

Much love to you all

Thursday, September 9, 2010

Day 114

Well I spent the entire day yesterday whispering "I trust you Jesus" By about 5 pm I actually meant was the longest, hardest day I have had in a long time. I felt instant relief when I was finally able to turn it over to Him again and renew my faith.

Bella has been on 95-100 % since going on vent. She is very tired & resting lots. She seems like she is feeling better. We are backed into a corner for treatment options. There are no other tricks or standard things they can do to try to get her off of the vent. The only options are to use more steroids for an experimental trial (which means she stays on them for an extended amount of time til she is off). We are heavily cautioned about this as they are controversial & have some side effects like mental retardation, stunted growth & makes her more subsceptible to infections. The other option is to do nothing, wait on her to grow & hope that she regenerates enough lung tissue for them to function. This option is highly unlikely as the ventilator destroys any new tissue that is regenerated & her lungs are so bad that they would probably not catch up.
We prayerfully choose the steroids. We feel again that nothing else matters if she can't breathe. Nothing else matters except one day bringing her home to love. Love unconditionally. We went into this with no expectations of a "perfect" outcome, this is the path that God has chosen for us. I feel with all of my heart that He has brought her this far for a reason, that she is ours. I just don't know how long it will take or what special needs she will have when we get there nor do I care. I just want to get there...
She has started the steroids today so I will keep you posted on her hopeful progress.

Much love to you all

Wednesday, September 8, 2010

Day 113

We got the call about 10 pm last night. Bella had to go back on the vent. They tried everything including a blood transfusion but could not get her to progress. The xray is showing that both of her lungs have collapsed so she was not able to make them work without the vent. Now all we can do is watch, wait & pray that they will heal & grow on their own, which will be a long long road ahead. I am heartbroken, scared & deflated. I am working on turning it over to Him, just not there yet...Bless her heart, she tried so hard & I am amazed at her will. I will find that same will in myself I sure hope to keep pushing on thru this. Thanks for your continued prayers, she needs them now just as much as she did 3 months ago.

Much love to all

Monday, September 6, 2010

Day 111

Well things change fast in the NICU, that cautiously optimistic remark I made in the last post is holding true. Yesterday Bella's progress started going backwards until last night she ended up on the cpap machine again for assistance breathing and back on nitric oxide for the pulmonary hypertension. I held her for 4.5 hours straight yesterday, we thought that may help. While it did for a little while it was no fix for her problems but sure did make me feel better. Most probably what we are experiencing now is a "rebound" from the steroids. She has been off for 9 days now and we were warned there could be a rebound period. So we are hoping that she does not rebound back to the ventilator and can hold tight on the cpap. She is on 95% oxygen now and we really need to see her under 85%. She has also slowed down on urine output and is retaining fluids which doesn't help with the breathing.

We continue with prayer and pouring every ounce of positive energy and love into her. We continue to remind ourselves that God walks before us, there are no surprises for Him so we must choose to believe that we are experiencing His plan. They tell you the NICU is a roller coaster, we have experienced that. But I am going with another preemie mom's description now: it is more like Chinese water torcher....There are no holidays in NICU but this too shall pass and we will pray our way thru.

Much love to all

Saturday, September 4, 2010

Day 109

This is the first post that has come in the quiet of my home in front of an actual computer since the boys have returned. The quick updates this week have come from my blackberry while at the hospital with Bella or playground with Dylan. There is much to update!

Bella is amazing. Simply put....she continues to amaze us in so many different ways: spiritually, medically and parentally. The fact that she made it thru the eye surgery without going on the ventilator is an example. Her respiratory issues should have made it impossible for her to handle medications that slows down her breathing without needing some assistance from the vent. Her fiesty nature should have caused her to be her own worse enemy for this procedure, where it was necessary to be still. Yet the day of the procedure you could feel the hand of God on her early in the day (this is a quote that came from our nurse, not my mouth). She was relaxed, her saturations went up instead of down...there were no tantrums, there was no fighting. Not to take away from the hard work that our nurses put in to keep her this way throughout the procedure but it truly surpassed anything that any person or medicine could physically do to make this possible. I will forever remember the converstation with Dr. Wallace upon her completion. A man that has probably done hundreds if not thousands of these surgeries, smiled at us with complete and total satisfaction. A satisfaction only found when you are truly using your gifts from God to change lives. He had only realized how premature Bella was during the surgery, how incredible it was that she was even there at that moment. He told us of this and looked into our eyes and said "today is a good day...."
Since Wednesday we have had a series of good days. Bella is requiring less oxygen than before. Her eyes are healing fantastically. She is more relaxed and is gaining lots of weight. She is now 3 pounds and 14 ounces. She was 3 pounds and 6 ounces earlier in the week. She can regulate her own body temperature and (not surprisingly) has a tendency to run on the hot side. She is taking 30 cc's of food. She is being taken off of caffeine (that was initially used to keep her from having apnea spells) because there have been no spells. Her pulminary hypertension is being treated medicinally (with Viagra, go figure...) And she has been weaned from 6 liters of oxygen to 4.5 this week. Our next endeavors (hopefully this week) should include trying to bottle feed her, moving her to a crib and being moved out of the most critical section of the NICU. Our goals long term are to continue weaning her down on liters of oxygen needed. She should be at under 1 liter (like .01...) before she can go home. This could be the part that takes a while but she is Bella so who knows! Another advancement with Miss Bella is that she (and us on occassion) is working with Tasha. Tasha has been waiting to work with Bella for a while now and just needed her to be off of the vent. Tasha is doing physical therapy with Bella and infant massage. She is teaching us too. She is working with range of motion in her arms and legs. Bella is responding VERY well to it, she loves her massage. Except for the butt massage, she definitely did not like that and let everyone know it quickly. We think it may be post traumatic stress from the "silver bullet" (stool softener)...

So here we are...109 days. Some of the best and worst days we have ever known. But we are here. We are exhausted, exhilirated, ecstatic: all at once. AND we are cautiously optimistic not knowing how long that it will be, what other set backs we may face. But we are here. Loving one another more than we ever knew we could, loving all of you for standing beside us, witnessing the all powerful, all mighty hands of God working... trusting & believing that with His guidance we will have the strength, the health, the faith and the patience to one day (no matter when that may be) have our family...all 4 of us...under one roof. Thank you so very much for your love, prayers and faith...

Much love to you all

Thursday, September 2, 2010

Post Surgery!

Sorry for the late update! Bella made it thru the surgery beautifully, NO vent necessary. Another one of God's great miracles. We are incredibly thankful to Dr. Wallace, Nurse Susan & Nurse Mary for getting her thru it. It was a labor of love! Dr Wallace felt like it was great timing, aside from wearing glasses by preschool age we are hopeful that the surgery took care of the ROP. If this had happened over 20 years ago there is a big chance that Bella would have gone blind with the disease. Praise the Lord for modern medicine & miracles.
Today she is on 65 % oxygen and resting comfortably with tylenol to ease the pain. Her eyes are a bit swollen and red but a small price to pay...
Dylan & I are having a mommy/Dylan date today. We are headed to Huntsville to see the Treehouse exhibit at the Botanical Gardens. Twelve different treehouses (including an Star Wars Ewok Village...) to play in. We are excited to spend some quality time & get out for the day.

We hope that Bella has an uneventful day full of rest and recuperation. Thank you again for helping us pray thru it!!!

Much love to you all

Wednesday, September 1, 2010

Prayer Request

We need your help praying thru another set back here with Bella. Today at 3:30 pm she will be having laser eye surgery for Retinopathy (sp?) Of Prematurity. The Dr has seen some development of the condition and wants to operate immediately. The surgery is standard for preemies however it is typically done while on the ventilator. Bella has remained off of the vent and on high flow cannula (oxygen) since our last post. She has been doing relatively well with it to date. They are going to attempt to do the surgery without putting her back on however there is a very good chance she will have to be reintabated during the procedure. Our fear there is that it could be another slow process getting her back off now that her steroids are completed. SO we are going to pray thru this like we have done all of the others, we are going to trust that our faith will see us thru and know His grace is sufficient.Thank you for your prayers!

Much love to all