Tuesday, November 30, 2010

Day 198

Well this was another horribly eventful weekend for Bella. She basically did the exact same thing as she did the weekend before starting on Friday, worsening (as in saturations dropped to 0) on Saturday and stabilizing on Sunday. The frustrating part from our end is that we had a totally new staff on board than the weekend before so no one is acknowledging the repeat. We are told it is her chronic lung disease and that is what we are seeing. However after really talking to our primary nurses and putting our heads together we feel like we are having some ongoing issues with her fluid retention. She has only been weighed on Monday nights so it seems to us that by Friday she has built up so much fluid around her lungs it leads to her worsened condition. We know this from the dramatic increase in her weight and her improved condition once receiving additional diuretics resulting in enormous urine output. So we have asked that she gets weighed on Mondays & Thursdays so that we can keep a closer eye on this. We are hoping to not have a repeat of last weekend again....

Bella was without food for 7 days, receiving all nutrients thru a pic line. We feel certain that she had been dealing with reflux issues and possibly aspirating. We were hoping to see an improvement in her condition by taking the food away. We did for the first few days however she was so upset with no feeds and everything else going on we didn't get a definitive answer. So the Dr started her back on full feeds today and we are monitoring closely for signs of reflux/aspiration. There is a test that can be done for this and will be eventually but she is not stable enough to do it now. She will also need surgery to get a Gtube and possibly a nissen for feedings. The ideal scenario would be to get these when she gets the trache as well but we have to see if she is stable enough to handle all of them at once.

Dr Walsh asked to start another round of steroids on her, possibly continuing at a small dose for extended amount of time. He tells us that in the studies they have done the side effects are limited for a baby Bella's age. He says that developmental delays and such are not a concern. The concern is that it will stunt her growth while on them so they will have to pay extra attention to nutrition and weight gain. The benefits outweight the negatives at this point. We started her on them early Sunday a.m. and seeing great results so far.

Today she has been between 55-65% oxygen with sats in 80-90s. We are praying to continue weaning her this week and keeping her this way. From our end we have a checklist of things that have happened in the past that have taken us backwards and we will be following up daily in regards to anything we may see. We are prayerful that some TLC, attention to detail and the Lord's guidance will get us to where we want to be.

Her primary nurses continue to amaze us with their skill, genuine love and experience. We just need to find more of them. We have had to ask that a few nurses not take care of Bella lately. She is very high maintenance and without the experience of dealing with a chronic baby like her many nurses are not a good fit. We are praying that the Lord sends a few more experienced and willing ones into our life.

If it is God's will then this will be a week of change! We continue with prayer and more love than we have ever known. We are embracing the holiday season and all that it means. We wish the same for all of you!

Much love to you all

Monday, November 22, 2010

Day 190

Well the past 4 days have been the worst and best that we have had in a long, long time..maybe ever. This blog could be lengthy, I could give you the short version but it would not sum up the insanity of it all or the blessings.

It started with the phone call from the Dr at 9 pm on Friday night as I was driving with Dylan and my mother in law, telling us that her heart was showing signs of failure and things did not look good.
It proceeded with a long discussion with Dr on Saturday about possible outcome of the pulmonary hypertension. Where we go from here would depend on that night or next few days...
It worsened severely on Saturday night when Dylan started running a fever & throwing up, Chris was working and I was home with Dylan, then as the night proceeded Bella was dropping her saturations into the 20's, 30's, 40's, 50's and remaining in the 60's for quite some time.
Sunday was one of the worst days I have had possibly ever in NICU. The Dr's told me they felt Bella was VERY unstable and possibly would not make it thru the night. They closed the curtains to our pod, had me hold her and prepared me for the worst. The weird thing is that I only saw her saturations drop into the 70's the entire time I was there and by the time I left (MUCH later) she was in the 90's so it made the whole thing even more confusing. Added to the roller coaster of the weekend we had not one, not two but three discussions about continuing her care, what we want to do if she coded and also heard over, over and over the term "prolonging the inevitable."
Sunday night things started to change with the blessing of an incredible primary nurse with years of experience and an amazing gift for caring for chronic babies. She noticed that Bella had way too much "stuff" coming out of her OG tube that is used for venting her feeds (the vent helps to remove the air from her stomach). From what I understand this should not be happening with the placement of her feeding tube (NJ). The short of this says that she is probably aspirating (formula goes into the lungs) which would cause her much worsened pulmonary hypertension, lowered saturations and overall worsened condition. It shows she has severe reflux. We also discovered that the nurse that was on Saturday did not vent her the entire night and her stomach went from measuring in the 20's to 40, it was filled with air and reflux. This could credit the horrible night she had on Saturday.
Today we woke to find Bella had a decent night but still dropped her saturations into the 70's but mainly stayed in the 80's most of the night, on 100 % oxygen and 20 ppm nitric. Today also brought on a change of Dr's (they switch out every 2 weeks). Bella's original attending, Dr Walsh, was back today. He is the Chief of Staff for the NICU, the Dr we first spoke with before moving Bella to Vanderbilt and to be quite honest I have been scared to death of his very honest and direct bedside manner. He trained most of the Dr's at Centennial so I also know he is credited for being the most skilled and experienced Dr that we could have. We fully expected to come in and he would give us "the speech" yet again. My prayer this morning walking into NICU was "Please Lord I beg you, do not let me hear one time today that my daughter is going to die" I felt like I could not take hearing it one more time, even though I know not to listen. We walked in to find the Dr rounding and doing his evaluations. He tells us that he does not think that her heart is failing nor did he say that they are doing everything they can. Instead (thank you Lord for this) he says "these parents have been told over and over that Bella is going to die for the past 6 months so if she actually does I have a feeling it would be a big surprise as she has proven us wrong every time. She has made it thru so many struggles, she is here 6 months later and we owe it to her to rule out every possible scenrio." Thank you Jesus!!! He didn't give up or give us the worst case scenario! He didn't mention " prolonging the inevitable." I truly credit this to the Lord and Him giving the Dr wisdom. He worked out a careplan to observe the reflux which also shows he listened to our primary nurse (this shows he is brilliant after all ;), follow up with the Echo for her heart (which is showing mild to moderate hypertension now), and watch to see if her condition worsens then a slew of other order to address various things like the viral infection we have insisted she may have.
The remainder of the day brought few desaturations and an overall more stable condition. She had infant massage, a professional photoshoot and a nice warm bath. She handled each of these beautifully and every moment, by the grace of God, started to erase the horrible moments from the past few days. She even showed Auntie Bryn her big ole smile. For any of you new preemie mom's reading this I just want to say that there is something so therapeutic and bonding about bathing your child...We also discovered that when her feeding tube was disconnected during the bath and such she saturated in the high 90's and even hit 100 on occasion. The discussion now is possibly making Bella NPO (without feeds), feeding her via IV or PIC line with TPN'S and lipids (fluids) while we let her lungs/heart heal enough to get a surgery that would fix this problem for good. We got out 20 CC's of "stuff" in her vent in just a few hours. The incredible primary nurse is going to watch her tonight to see if it should take place immediately or if the Dr should make the call in the morning. Also we weighed her tonight, she went from 7 pds and 5 oz to 9 pounds and 5 oz in a week. While it is most wonderful that she increased her weight we have to be cautious that this could be due to adema (water retention verses healthy weight gain). This could also credit to her worsened conditioned.

So in 24 hours I have held my daughter for what was "possibly the last time" to holding her while we change her sheets. We have heard that we are "prolonging the inevitable" but are responding now that all of us are "prolonging the inevitable" but we still get out of bed in the morning, take our vitamins, go to the Dr when warranted and rule out every possible scenario before listening to an opinion that we are going to die soon...We are demanding the same for Bella and they are doing it...We have been reminded that the Lord will not give you any more than you can handle. We are reminded that He is the ultimate healer and advisor. We have been reminded to never take anything for granted, especially your family and friends- NOTHING matters more. We have learned yet again to go with your instinct and most importantly to not only talk to the Lord but really, really listen. More updates to come...

Much love to you all

Saturday, November 20, 2010

Day 188

We spoke with the Dr today that has been on call for the past 2 and a half weeks. We have grown rather fond of him and have a great respect for his skills and bed side manner. He is brilliant and realistic without losing his sense of compassion for the parents and patient.

He tells us that the Echo is showing severe pulmonary hypertension and the right side of the heart is much more strained than it was in her last echo that was taken 3 and a half weeks ago. He gave us the cold, hard facts and wanted to hear what we had to say in return. Of course we are ever optimistic, prayerful and continuing to fight with her. We are realistic as to what the medical facts and statistics are telling us but we are insistent that we are still here for a reason and only the Lord knows what that reason is and only He will tell us when it is time to let go. The Dr agrees that we should remain prayerful that with time and proper nutrition she may overcome this as well. He just wanted to make sure that we were aware of the medical facts and what could occur should she not show signs of responsiveness to the treatment over time.
We were disheartened to find her requiring 100% oxygen this morning. Basically she has gone from 65 % to 100% in a little over a day's time. The Dr has checked for infection as this is a rather sudden change in condition but nothing is showing up yet. He says that at this time he has to credit it to the nitric wean and her heart not tolerating. They have increased nitric back to 5 ppm now. Her saturations are good when she is calm, she has been in 80s to mid 90s. She just happens to drop down when she gets irritated and she is slow to come back up. Despite everything going on she looks good and all else is going well.

The news that came last night really shook me up because it is something that I have feared from the beginning but everyone including Vanderbilt in the beginning had told us the hypertension is moderate and not a factor in her frequent set backs. As a parent I feel like I should have pushed harder for further investigation and gone with my gut instinct on this one. I won't get too caught up in it as we are following the path the Lord has set before us and this is where it has taken us so I have to think every step along the way is part of a bigger plan. I only want to say that if there are any preemie mom's out there just going into this situation please, please be an advocate for your child. Do not be afraid to speak up, do not second guess your intuition as a mother and be persistent. Someone will eventually listen to you and if not then at least you know you have done everything you can to help.

We have come to love our new home at Vanderbilt, we have come to appreciate the staff and they have come to know and love Bella. She gets spoiled by her primary nurses (which we finally have a few exceptional ones!) and she has won the affection of the Dr's and nurse practitioners. We feel with all of our hearts that the Lord led us to the right place at the right time. Our family at Centennial has remained as wonderful of friends as they were caretakers with frequent visits and phone calls. We have made some life long friends in this journey and we are eternally grateful for that.

The Holy Spirit has comforted us today. Even after the cold, hard medical facts we are upbeat and ever hopeful. We pray for growth for Bella and responsiveness to the treatment for the hypertension. We are truly thankful for our God and being able to turn all of this over to Him....We continue to follow the path He has set before us with love, hope and prayer.

Much love to all

Friday, November 19, 2010


Well this blog is long overdue....I have few excuses for the lack of updates other than it has seemed to good to be true. Somehow my mother's instinct on this has unfortunately proven to be right once again.
Since transferring to Vanderbilt, Bella has done the best in many aspects that we have ever seen her do. Just a little over a week ago she was on 43-50% oxygen. The best we have ever seen. She seemed to be moving forward at a wonderful pace. They started weaning her pressures on the vent, weaning her nitric, weaning her pain medicine and working towards her trach surgery or possibly extabating her from the vent.
Tonight I got a call from the Dr, it is never good when a Dr calls you at 9 pm on Friday night. He is compassionate and a parent so knew that I would call to get a report from the nurse. He wanted to give me the news instead.
She had an Echo today. This shows what the heart looks like. He tells me the right side of her heart is showing extreme stress and is very concerning. It shows that her pulmonary hypertension is a major concern. He says that 50% of children outgrow this condition, the other 50% have more fatal outcomes and the right side of the heart gives out. He says that her gestational age and lung condition more than likely puts her in the 50% fatal outcome.
We are going in to meet with him tomorrow to discuss possible care plans from here. He says they need some time to discuss and figure out where to go. Tonight she is on 75% oxygen, gone up from 1 ppm nitric to 3 ppm and heart rate around 180. We have many, many questions that will be addressed tomorrow and even more so on Monday when we speak with the cardiologist.
I have had many, many talks with Dr's with very grim news. It should get easier but it doesn't...As optimistic, prayerful and hopeful we are,it is still very, very upsetting.
So tonight I pray for guidance for the medical staff as to her treatment. I pray for healing from our Lord that can provide divine intervention. I pray for peace and wisdom to ask the right questions and provide the right feedback to assist or motivate. I pray for trust that God does not have a plan B. I pray for peace. I pray for acceptance of His will and I pray for a gracious heart that appreciates we have been given 6 months that we should not have been. I pray that the Holy Spirit comforts me and takes away this hurt in my heart, this huge knot in my stomach that won't allow me to normally breathe , eat or rest and this overwhelming since of sadness that comes with the thought of losing her.
I'm sorry that I don't have more uplifting news or thoughts. I pray that tomorrow I will.

Much love to all

Thursday, November 4, 2010

Day 172

Well Miss Bella is having a series of good days this week. She is starting to adjust to her new surroundings and folks are starting to see the sweet, alert little angel we all love. Even the Dr admitted yesterday that he got to have a moment with her where she looked at him with those big ole eyes and was calm & alert.
We are very impressed so far with her care plan. They have really gotten to know her lungs and heart already. Their plan is to be proactive instead of reactive. She is currently on a short round of steroids because she was so sick and we needed to do something extreme to change the direction we were going. She is responding beautifully. She will also remain on inhaled antibiotics for an extended amount of time. They have been seeking counsel from the Cystic Fibrosis specialists as to treatments. She does not have CF but her lungs look very similar. Her response to the antibiotics and steroids are showng that inflammation & bacteria/infections could be the culprits of her many setbacks so at least we know what to focus on. The immediate plan is to get her vent settings down & get the trach surgery asap. We are getting closer. She is on 75-85 % oxygen and 10% nitric. They are also keeping her oxygen on the high side to treat the pulmonary hypertension as it is very important we keep her heart in good condition or we have a whole new set of major problems. They tell us the biggest factor in her outcome will be nutrition, nutrition, nutrition...she is still on continuous feeds and they are increasing feeds almost daily. We have always heard that if she could breathe as good as she eats then we would be home already so we are hopeful she will continue to gain weight & grow. She is 7 pounds and 5 ounces now!
As far as a long term outcome or diagnosis we have heard some pretty ugly things but again we have heard these before she was even born and we are still here. We look to the medical team for immediate care plans and we look to God for the rest. We feel strongly that He will guide the hands, hearts and minds of those that matter. Only time shall tell what His plans are for her, we are hopeful and prayerful they involve someday coming home to a family that loves her with all their hearts.

The adjustment away from our Centennial family continues. I have to remind myself daily that this is not about us, it is about Bella and making sure she is in the place that she needs to be. I have to not let myself get caught up in the little gripes that come with unfamiliar hands treating my child and trust that each one of them are in our life for a reason. Hopefully they will remember that I am just a Mother that wants the best and at times feels so out of control of my own daughters comfort level. So I pray for patience for myself and for all of her caregivers. I also realize that they might not be as scared of the "pissed off 7 pound baby" as they are of the crazy, demanding Mother so I will take some deep breaths and TRY to chill out :)

Our journey continues with prayer, love and hope...

Much love to you all