Well, I haven't blogged because there hasn't been much to say. Brynn hasn't really made any significant strides either forward or backward for over two weeks now--until this morning.
Today she is 38 weeks (37 is considered full term) and she still doesn't eat much of anything by mouth. This week, they're going to bring in a speech/occupational therapist that specializes in getting these little NICU preemies to eat so hopefully that will help. I must admit I'm still a little shocked that occupation even exists.
Anyway, if she never learns to eat by mouth, we'll have to insert a G-tube, which is basically a semi-permanent tube that goes directly into their stomach for feeding. I think we're still a ways from that, though, and I just have a gut feeling (fitting phrase, eh?) she won't need to have anything that drastic.
In fact, Matt gave her another Priesthood blessing last night and said she'd learn to eat. This morning when I spoke with the nurse, she was awake and sucking well on a bottle for two feedings in a row--already a major step foward!
Matt also blessed her breathing to stabilize. Although she's been weaned to .2 Liters/minute on her oxygen, which is improvement, she still desats (low blood-oxygen levels) at least once a day, sometimes several times per day. In order to come home, she has to be 5-7 days without any significant desats, so I much appreciated knowing from Matt's words that the Lord wants her to stay more consistent.
Matt also said many other things in her blessing, but one thing I appreciated is that he said Angels would continue to watch over her and protect her. When he said that, I just was filled with gratitude for all the dangers Brynn has avoided--not only things we know she narrowly escaped (like PDA surgery), but also things that we never considered (like a bad infection or a random complication). For all we know, she could have been exposed to several deadly things but was protected all along by her Angels.
We suspect some of her angels are her Great-Grandma Jones, Great-Grandparents Karren, and Great-Uncle Blaine, who all of whom recently passed away. We also bet her Grandparents Hunsaker, Great-Grandpa Jones, and Auntie Anne are rooting for her, too. We surely do appreciate all those who care for her in this life, as well as the next and our prayers go out to the family members most impacted by these recent passings.
We also suspect that her nurses and doctors are her living angels. We know exactly where Brynn would be without the wonderful Overland Park NICU staff.
In addition to Brynn, though, I feel like Angels have been watching over me lately, too. With Brynn's lack of progress, I was getting more and more discouraged. I don't know if I felt worse about Brynn's situation or about my inability to remain positive but either way I felt miserable. I felt frustrated that I'd lost the peace I've known throughout this whole ordeal and wasn't sure how to get it back. So even before Brynn's blessing, I asked Matt to bless me with comfort and peace.
Shortly after his blessing, a scripture from Isaiah popped into my head. It said something to the effect of, "If thou wilt . . . then thy peace will be like a river." Only I couldn't remember what filled in the blank. What did I need to do to obtain the peace? I quickly turned to my scripture index to find the passage but "accidentally" found another one instead. Although Isaiah 48:18 was the scripture I thought I was trying to find, Isaiah 66:11-13 is what I was led to. Upon reading verse 13 especially, I burst into tears, filled with the knowledge that God knew me individually. He brought to my mind a scripture I didn't even know existed--and taught me that as much as I desired to comfort my little Brynn in her struggles, He desired to comfort me.
Even now, when I think of that moment, I begin to cry. There's something about knowing in your heart and mind that you haven't been overlooked by the Universe's greatest Power--that He knows you, even better than you know yourself. Even though that particular verse in context means something entirely different than it means to me now, the Spirit of God came to me through it and I have felt totally at peace with Brynn's progress (or lack thereof) ever since.
I love God. I love my husband. I love my baby Brynn. I love that my husband is worthy to exercise the Priesthood Power on God's behalf; and that God was willing to bless both Brynn and me during the home stretch of her NICU stay. I know the Priesthood is real, and I know God knows each of his children by name--including Brynn, me, and you.
I love you all!
Natalie
PS--Oh yeah, I almost forgot--Brynn broke the 5 LB mark last night! Wow! She seems huge to me, even though she is technically still well below the 10th percentile--even for other preemies born at 25 weeks. I guess she takes after her Mommy.
Also, here are a few recent photos--
At the encouragement of my mother-in-law, Brynn is wearing her Auntie Anne's old clothes (Anne passed away shortly after birth due to Trisome-18):
Brynn's cute face:
My awesome husband with our miracle baby:
Fall Update
7 years ago
6 comments:
Wow! It's really amazing to realize all the things the Heavenly Father does for us and the overwhelming love he has for us. I'll pray for you, your husband and your baby. Miss ya!
Dawn Edelen
I was asked to speak on Elder Holland's last conference talk "The Ministry of Angels" yesterday in sacriment meeting. There are definitely angels comforting and guiding you, Matt and Brynn. She has such a bright, quirky smile! And your hair is gorgeous, by the way!
Hi Natalie-It's Linae's sister and your old roomie! :)
Wow, you are such an amazing woman! It breaks my heart to hear and see of the trials you and your family are faced with! I feel like I can say that "I feel your pain"! My oldest girl (almost 5) had kidney cancer at the age of one and my 2nd child is still battling with seizures-unexplained! It's so frustrating to face medical issues!!! I found comfort in your scripture and admire your courage and postivie attitude.
I'm so happy that cute Brynn is making progress. She is so sweet!
It's great to catch up with you-and I also LOVE your paintings-you are so talented! Good luck with everything!
What an inspiring blog. I love reading it and your faith and reliance on God through all of this.
Oh I'm so happy for you and little Brinn. I showed my little first grader (who had a similar experience as Brinn) the pictures of Brinn today. She loved them. She thinks she is so cute and wishes she could be at the hospital to be with her. She is so sweet and wants to be there to help her through what she went through. I love children.
Sorry, that anonymous comment was from me, Jenilee!
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