Baby Bella Day 85

What is anyone really suppose to expect 36-48 hours after someone has abdominal surgery? Any parent wants their child to come through any type of surgery with flying colors. Last night it was relayed to us that Isabella may be coming off the ventilator this morning. Sure enough they weaned her fentanyl and vent setting to pull the tube at 9am this morning. Unfortunately that was too much stimulation for her at one time...less pain medication as well as having to breathe fully on her own. In the process Bella was not swaddled; she was left fairly exposed so that nurses could get to her very easy. Needless to say that made her course this morning rough, a lack of comfort on many levels. Bella struggled for a couple of hours after extubation with apnea and bradycardia. Luckily Mommy & Daddy got there just in time. We spent 6 hours today trying to relax her; reading her books, giving her kisses and just resting our hands on her. We also pointed out that she enjoys being swaddled or tucked in tightly, so they used a special blanket we had bought for her to bundle the princess in to rest. After this she has done much better. Her attentiveness is great, but she needs to sleep and fights it so much. The fentynal has been decreased quite a bit and tylenol has been added to the pain regimen. A caffeine bolus was given some time this afternoon to help stimulate her to breathe a little more. Her incision looks good without much oozing. All of this considered, Isabella is doing great after such a major procedure. The best news of all, SHE HAS BOWEL SOUNDS!!!

In the beginning of this venture you never think it could come to an end, now it is sneaking up on us. Each day has been a roller coaster ride, no matter how boring it might be. It is remarkable all that Baby Bella has gone through, everything our small family has experienced, and all the love and outreach that we have been blessed with. Bella has made it over (what we hope to be) her last hurdle, which means that Chris is going to be gone for another two weeks. I keep telling myself, "that just means we are almost home!"

Peace to all & God Bless!

Bella's White Board:

Baby Bella Day 84

Sorry it has taken us so long to get the update out, but we have been busy all day. Isabella is doing well. She has the expected post-op issues; quite a bit of pain with a good dose of medication, changing of IVs, lots of blood work, and still on the ventilator. The surgery was less than 24 hours ago and the Respiratory Techs have been able to wean Bella down to minimal settings. She will remain on the ventilator as long as her belly is distended and is on a good dose of fentynal; she needs to relax as much as possible and not work too hard to breathe. The doctors will push her when they feel she is comfortable and stable enough to breathe on her own. Body swelling has occurred but not nearly the extent to which it was last time. All of her vitals have been good; this afternoon Bella's blood pressure was a little low but that is mostly do to the pain medication. There have been several times where she is alert with her eyes open responding to our voices; that is the most delightful thing of all. We will post again tonight; hopefully with a few pictures.

God Bless!

Baby Bella Day 83

Quick update, we will write more later. She went into surgery finally at 7pm and was done at 915. Everything went great and Dr. McGahren was very pleased with how the surgery went. She had no complications and is now back in the NICU. She is still intibated and won't be fed for the next week but we are so excited that she did so well!! Thank you all for your prayers and well wishes.

Thank you Lord for watching over our little angel and protecting her with your healing hand!!

Baby Bella Day 82

Today Bella had her laser procedure to correct her ROP. She did well and was very tired afterward. Dr. Carter said everything went well, but we won't know how successful it was for a couple of weeks.

Her reattachment surgery is tomorrow and she is 4th on the schedule. But we are going to be up there first thing in the morning to spend time with her before she goes to the OR. We were told that the surgery will last about 2 1/2 hours. We spoke to the surgeon and agreed not to take out her appendix because she has hydronephrosis. The appendix can actually be used if she has urinary problems or surgeries in the future. (Thank you Carla for the email!!)

We added another preemie blog to the right! We found out that Morgan, another micro-preemie at UVA who was born just a week before Bella, has a blog. Morgan also has a wonderful story to tell.

On a powerful note, we attended Ash Wednesday service and felt like the Lord was speaking to us. As father David started to read his gospel lesson, Machel and I instantly looked at each other. It was Matthew 6, the passage we read Bella every night for the first 5 weeks of her life. We have since read it ocassionally. But once we heard those words we were filled with joy and comfort. May the Lord bless you all and continue to bring you joy and peace.

Baby Bella Day 81

Today was filled with lots of tests, retests and new revelations. Our poor little girl had a very rough day today. It started at 10am when they took her down to do her fistulagram. Machel and I walked down with Bella the whole thing only took 30 minutes. The Fistulagram is pretty non invasive; they put a dye into her body to track it and make sure that there is no blockage in her intestine before the surgery. She was just fine afterward. She was awake and mommy and daddy talked to her and held her, then mommy tried to breastfeed her. This is a great thing because Bella is learning to breastfeed, so she normally tries for a few minutes, then falls asleep in mommy's arms. But everytime she does, she gets some extra breastmilk. (They still give her the full feed after she tries to breastfeed.) So we like to try this because she needs all of the weight and breastmilk she can get before the surgery (by the way she is up to 2030grams or 4lb 8oz). Then after lunch came one of the most difficult things I've ever seen. Bella had her eye exam and it is not pretty at all. She screamed and cried and screamed some more. They tell you not to look at the eye exam and Machel has described it, but I wanted to see what they were doing to her. I felt so bad for my little girl and she was so unhappy after the hour long exam. I don't want to describe it in too much detail, but it was not pretty and all I could do was hug my baby girl when it was all done. Her eyes were so puffy and all she wanted was to be fed and left alone. Unfortunately, the Dr. came and spoke to us after the eye exam and he said that her left eye had gotten worse and that it required surgery, but it was borderline, so he wanted a second opinion. That meant that she would have another eye exam. I felt so terrible for Bella. The second hour long eye exam confirmed that she needs surgery to her left eye and the Dr. wants to do the same procedure in the right eye, even though it is a little better. It's not a true surgery, it is a laser surgery and she will be sedated but it is a pretty non invasive procedure that is done in the NICU at her bedside. So after spending all day with her we finally left for the evening. Bella was exhausted and zonked when we left.

I am going to vent for a second now.....When we returned at 10pm we were greeted by nurse sourpuss. She wanted to know why we were looking at her chart (we were checking her temp, since she had been out for the eye exams and is no longer in the isolette). Then I went over to give her kisses and noticed she had some crusties on her mouth, so I looked in her drawer for a mouth wipe. The nurse (who we have never seen before in the 3 months we have been there) says what are doing? She has had a very hard day she needs her rest. Machel looked at her and said thanks, we were here at her side all day long, we know what kind of day she had. I was so pissed, I understand you are caring for my child, but there is no need to take that approach with us. Furthermore, if she would have bothered to read the chart she would have seen we were with her all day and performed her care for most of the day with Carol her day nurse. It was all in the chart we weren't supposed to be reading. Then Janet, an RT and one of the nicest ladies ever, stops by to see Bella. We talked and she told a funny story about her grandkids and we all laughed. Right after that nurse sourpuss was nice to us and her whole attitude and demeanor changed. Apparently since Janet talked to us it was alright to be cordial with us. As you can tell I am still not happy with her. 99% of the nurses have been amazing and are truly unbelievable people. But occasionally there have been nurses who forget their bedside manner and need to have a better approach to the parents of these babies. They aren't bad nurses, they just need to work on their people skills a little more.

All in all it was a stressful day filled with lots of tests. Bella will have her reattachment surgery on Thursday, but they don't have a time yet. She will have her Laser eye procedure tomorrow at 3pm. I hope these are the last two surgeries that she will ever need and that the Lord helps her through these next few difficult days so that she can finally be released and come home to TEXAS!!

Proverbs 3:5-6
Trust in the Lord, with all your heart. Never rely on what you think you know. Remember the Lord in everything you do, and He will show you the way.

Peace and God Bless!

Baby Bella Day 80

Isabella is officially out of the isollette. As of last night she was placed on the table bed and has maintained her temperature throughout the day fairly well. She was supposed to have a fistula gram today; something pediatric surgery does prior to the procedure to reconnect her bowels. This scan will show blockages and how the other end of her intestines are working after "being out of use" for the last two months. Unfortunately Bella got bumped till tomorrow for this. So she will have the fistula gram, a VCUG, and an eye exam tomorrow. We asked if that was too much stress for her in one day with surgery being so close. They have said the two scans really aren't straining on her body. We also found out today, when giving consent for Thursday procedure, that they will remove Isabella's appendix as well. Supposedly it is common for them to remove the appendix in a situation like this in order to avoid having to reopen her any time in the near future. Apparently with this area already being sensitive the appendix is compromised and it is best to remove it while repairing the small intestine. Over the next several years Bella will have to see a GI specialist to carefully watch for stricture in or leakage from the small intestine. Hopefully Dr. McGahren will be well rested after his vacation last week and completely up to the task of reattaching the princess without complication.

We appreciate all the prayers, especially with the events of this week. We know that the Lord will fill Isabella with the same strength and courage she has possessed from birth.

Baby Bella Day 79

Awww, isn't boring nice! Since Chris has been back, things for Isabella have truly been boring, which is great from a family perspective. We have been able to play with the princess and interact with her extensively over the weekend. Chris attempted to bottle feed her several times. As you can see in the picture below, Bella didn't care for the bottle too much on today's trials. So we decided tonight not to use the bottle anymore this week. When she has surgery on Thursday she will not be able to have breastmilk for almost 7 days. Therefore, we don't see the point of pushing the bottle in these next few days prior to surgery. Bottle feeding for her right now can be stressful, over stimulating, and too much work when she needs to keep her weight up for Thursday. I will still try to breastfeed once a day. Breastfeeding can actually be comforting for her and milk doesn't pour out like it does in the bottle forcing her to learn to swallow and breath. The other thing she is working on right now is maintaining her temperature. She almost has it under control and will most likely move into a table bed some time tomorrow. She will have to be on the table bed for surgery. So this is a good transition. After she recovers from surgery she will get a bassinet...how exciting!

We hope all of you had a splendid Sunday and are looking forward to the coming Easter season! God Bless!

Baby Bella Day 78

Our little girl had another stable and all around great day. I got to bottle feed her today at 9pm. It was the first time she ever got a bottle and she did pretty well. She got through 12ML of the feed, but she forgot to breathe several times and is still learning how to breathe and drink milk at the same time. She is so adorable and I got to hug and kiss on her again a lot!! It is so amazing holding her and having her look at me and smile. She is so precious and I can't wait to be able to take her home.

On a side note, Machel and I went to Monticello today and spent a fabulous day together. It has been a long time since we were able to do something like that and it was so beautiful. We have been in Virginia for almost 3 months now and have not taken advantage of the beauty, history and nearby attractions. At one moment I looked at Machel and said this is crazy isn't it? I was happy to be spending some time with my wonderful wife.

Here are some pictures......enjoy!!

Baby Bella Day 77

Isabella has been our blessing in the flesh now for 11 weeks! We are so blessed and thankful to the Lord for giving us such a miracle! I flew in tonight and the first thing we did was go and see our little baby Bella. I got to hold her and see her beautiful little face! She looks so adorable without anything covering her face, she looks like such a big girl!! She seems to be doing very well and continues to breathe very well. Her weight seems to have plateaued at 4lbs 5ozs, but we hope that she gets back on the chunky monkey train soon!! Here are some pics of our little angel. Last night we also started taking more pics of her Nurses and RTs. We want Bella to know all of the wonderful people who cared for her and prayed for her and loved her in her first months of life. We are going to make a picture book for her and us. Thank you all for your prayers and God Bless!

Baby Bella Day 76

The princess is breathing great! She seems to be doing better now that she has nothing attached to her face than she ever did before. They have taken her off of the caffeine and L-carnatine; they blood tested her muscle tone today to make sure she does not need another round of L-carnatine. Her ultrasound results for the hydronephrosis showed that it is still there with no change. However, Martina (the NP) said that her case is very small considering Bella showed no other signs of the hydronephrosis. She will remain on amoxicillin and a VCUG will be done before discharge to see if Bella needs to be treated for ongoing kidney reflux.

Here are the results of today's photo session:

Baby Bella Day 75

Unfortunately I have not felt well today, so I decided pretty early this morning that I was not going to be able to see Bella. Well, as you can see by the following, I didn't actually stick to my plan...






I only spent about 30 minutes with her, but I had to at least make an effort to see her face in person. So did you notice anything in the above pics? Look a little closer at her nose. The cannula is GONE!!! Totally exciting!!! Not many other developments for the day. Hopefully I will be able to spend more time with her tomorrow and have more to share.

Baby Bella Day 74

Sorry everyone, no pictures today. I cannot get too addicted to the camera, so I left it at home. On top of that, Isabella had another busy day with exams and tests, so I wanted her to get as much rest as possible and not bother her with photo sessions. Her first test was an eye exam. The Opthamologist said her eyes have improved slightly and may even be getting better. I posted a link on ROP under our RESOURCES section on the right if you are interested in learning more. The right eye is zone 2 stage 2, left eye is zone 2 stage 3, and her blood vessels are straightening out. She also had an ultrasound scheduled for today to measure her hydronephrosis. The read on that will be in tomorrow. There were some other positives that arose today. I found out mid-morning that the hydascan yesterday showed her liver was normal. Meaning that her bilirubin levels are elevated due to the fact that her liver still needs to grow and process everything she has been through (basic colostasis/jaundice). Praise God for no severe liver damage or disease. She is officially on LFNC (low flow air), down to 750mL on cannula. At this rate she may be off the cannula before her surgery next week. Although she will be intubated during the surgery, and have to recover from that, this is a huge step in her lung development to make the transition after surgery most beneficial to her. Even though it was a busy day, there were many positives for Isabella.

Thank you for all the prayers and continued support. All of your love is helping our angel to stay strong and fill her with the Holy Spirit. God Bless!!!

Baby Bella Day 73

Baby Bella Day 72

You may have noticed in the pictures, Isabella has been sleeping quite a bit lately. Which is actually great because she is gaining weight; last night she was up to 1920grams. The doctors said that the phenobarb she is taking for the liver enzymes will make her drowsy. It seems like every time we were with her this weekend she was sleeping. However, there were the occasional cries when she was hungry, and goodness did she let out some cries.

There were no medical revelations with Bella this weekend. They are just hoping that she stays the course until her scheduled surgery in 11 days. Labs will be drawn tomorrow and they are considering doing the hydascan to evaluate her liver/gallbladder. We did work on breast feeding and our little 34 weeker is picking up on it well. She seems to have decent motor skills thus far. We have been using the pacifier with her tube feedings to get her acquainted with normal feeding. I think Chris and I both picked up on the maneuver that she likes her head rubbed while eating...it makes her relax.

All in all we had a great, loving family weekend. It was so nice to have Chris here even if it was short. Hopefully this week will fly by and Friday will be here before we can even realize it.

Special thanks to Kathleen and our Oklahoma family for the sweet Valentine's Day packages. They were precious!

We love you all...God Bless!

Mark 1:2-8
2It is written in Isaiah the prophet:
"I will send my messenger ahead of you,
who will prepare your way"
3"a voice of one calling in the desert,
'Prepare the way for the Lord,
make straight paths for him.' " 4And so John came, baptizing in the desert region and preaching a baptism of repentance for the forgiveness of sins. 5The whole Judean countryside and all the people of Jerusalem went out to him. Confessing their sins, they were baptized by him in the Jordan River. 6John wore clothing made of camel's hair, with a leather belt around his waist, and he ate locusts and wild honey. 7And this was his message: "After me will come one more powerful than I, the thongs of whose sandals I am not worthy to stoop down and untie. 8I baptize you with water, but he will baptize you with the Holy Spirit."

Happy Valentine's Day Baby Bella!!

Here is the princess in her Valentine's gear courtesy of our friends in Oklahoma!

Baby Bella Day 70

The FABULOUS Ellie and Emilie!

The princess saying, "Get the light out of my eyes!"


Dr. McGahren

Thank goodness Daddy is back!!!

Baby Bella Day 69

Not much changed for today! Good news is that Isabella is on cannula full time now and doing marvelous. On the other hand her bilirubin and GGT levels have risen. Chris and I ran through a list of things that could be causing this over the phone. I asked the NPs all of our questions and it boiled down to this:

1) Bella's liver is still very premature and too small to process correctly,
2) The extended use of TPN caused scarring (the minor liver damage) that prohibits good flow of bilirubin, and
3) Her daily bilirubin is not flowing out properly due to the dump of particles that created a sluge after switching to breast milk.

As a result they have started her on a new medicine called phenabarb. They are going to monitor her closely over the next few days to see if this helps. A hydascan has been scheduled for the 16th in case her blood screenings do not show reduced levels.

Here are a few pictures...enjoy!!!

The amazing Lauren & Abby!!!

Grandma changing the princess!

Bella's adorable outfit she got from Emily!