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I was all over the map emotionally today as was Bella's condition.
We made it into the hospital today around 2, walked into the NICU to see Bella laying in her bed without the CPAP and very contented. Her nurse approached us and told me I could breastfeed her whenever I was ready. We were in disbelief. In fact, I was sure the nurse had the wrong baby or the wrong parents. After questioning her, she informed us that indeed the doctor wanted Bella to try to eat on her own and that I could nurse her. I was thrilled!!

The doctor came in to see us just before I set up to nurse in order to explain the change of course. She showed us Bella's x-rays and talked with us about the bronchoscopy (endoscopy) that was performed earlier today, which was done right at her bedside without any anesthesia!!! The bronchoscopy showed that Bella does indeed have the Tracheomalatia (sp?) which is what the boys and I were all born with as well. It's a flap in one's airway that is "floppy" and can cause noisy breathing known as strider as well as eating/breathing difficulty.

There was one other very rare syndrome the doctor wanted to rule out, the spelling and explanation of which I am not even going to attempt at this late hour. The first step in doing that was to feed Bella and see how she handled the food. So, on that note, I went back into Bella to feed her. She did rather well for not having nursed thus far. Lawrence and I and her nurse were all very encouraged by what we saw.

However, later in the evening when we came back from dinner, we sat down again to feed her, this time from a bottle so that the volume could be measured. Bella had one other feeding in between this one and me nursing her but it was very little volume. Because she handled it well, though (meaning she did not choke on the food), the nurse was able to take her IV out which was supplying fluids. Lawrence and I sat down and took turns feeding her, trying to get into her the volume that was needed to show true progress. She was taking a long time, but got really close to finishing the bottle and then threw up a good bit. The spitting up was not alarming, but the blood that came with it was. It was scant, but nevertheless present and this was discouraging. After the doctor was informed, it was decided Bella would have to go back on the IV for the night and have no more feedings until they could figure out why she threw up the blood. The nurse suspects that it could be irritation in her throat from the bronchoscopy earlier today along with several other tubes that have been threaded down her throat. But, the doctor ordered an x-ray of her stomach to check if there's anything concerning there along with some more bloodwork.

SO, Lawrence and I anxiously waited outside the NICU while they stuck my poor baby again for the IV and bloodwork. It took an eternity, but they eventually found a vein that wasn't blown. When we came back in, the nurse who put the IV in mentioned something about her veins being blown from so many lines having gone in the past several days and that if she had to find another spot for an IV, she may have to shave her hair to place one in her head! NOT really the most sensitive thing to say, but we're trying to get used to the fact that some medical staff have just been in that environment way too long and have forgotten what it must be like to be on the other side of their care. (No offense to the good ones out there...because there are many good nurses and doctors, and we have been well cared for by these amazing people!)

We left tonight realizing how much we need to continue to throw ourselves upon God's mercy no matter what news we hear. We are both very tired tonight and our emotions have not always served us well today. But, we are continuing to pray and wait on the Lord, seeking to cooperate with His plan and His timing for all of us in this. Please pray for grace to persevere and flexibility as we bend with whatever twists and turns God throws our way.

84 comments:

Alivia's Momma said...

Love you. Praying.

Zoanna said...

I'm encouraged that your little girl nursed at all, even if she threw it up. For a baby so weak, it takes a lot of energy to eat. I'm siding with the nurse who told you the blood was from irritation, and pray that's all it wsa (scary as it to see blood for any reason). The flap in the airway--does it close with time, or how is it treated? Praying for all of you. REally praying fervently your baby gets to come home very soon.

Beth Young said...

Bri. Now I know why you had an emotional day. I'm really praying for all of the situations you mentioned. I'm praying that her veins would improve as well. It's a good thing they never remember any of this and it's a wonderful thing you are at Johns Hopkins. It's a very good thing you have the Love of the Lord to lean on.

beth chase said...

bri,i too am encouraged that she was able to nurse! praying that she continues to improve & that she'll be home soon. ~beth

KathleenZ said...

Briana, That must have been so wonderful to hold, and cuddle and nurse your little baby girl. We're praying that you'll be home real soon. The 2 year old Sunday School today colored pictures of baby Bella to take home to remind them to pray for your baby girl. Your church family loves you.
Kathleen Z

Alivia's Momma said...

I forgot to mention in my first post that after Livi got her bronch in November she threw up and there was blood in it. They told us that not only does the bronch irriate the throat but having to be on oxygen (Livi had a blow by and a nose canula) really dries everything out. I'm excited to hear you got to nurse and that she was good at it. She's tough like her mommy. Give her huge smooches and squeezes from me.

Tori said...

Bri, I am glad you got to hold & nurse your beautiful Bella. Praying... Vicki G.

Anonymous said...

Your descriptions are so vivid I feel as though I were there! From the surplus of difficult medical information ...to relating how your emotions didn't serve you well! Recovering from delivery, caring for your boys, keeping up the milk supply, traveling to see Bella (and not being able to take her home!)...only Christ can sustain you both. There are truly many praying, praying and beseeching Jesus for a great, quick outcome). GLA

peg said...

I heard from Laurie's blog she's hone, she's home!! Hallelujah, she's home!!
We'll keep praying for you all..and rejoicing that Bella's OK!
I can't wait to meet her at the ladies' retreat!!

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