I prayed last week for a sign, for a miracle, to keep my Sunni here. I have to admit though, I lost some hope. I thought we would have to say goodbye when I was not ready. I did not want her to be in pain any longer. But selfishly, I wanted to keep her too. I wrote to you in the last blog about the chaplain at the hospital that came and prayed for Sunni. Her name is Glenda. She talked to Sunni and I swear that was the turning point for Sunni. Call it what you will--but God was there. Sunni opened her eyes to tell us not to be afraid; "I am still here and still fighting--for you and for me." She assured us this before and after surgery, too. I am so proud of her. Sunni has a purpose here on earth. She has already taught me so many things. Never give up, don't sweat the small things, and how important family is are just a few things.
So here is a quick update on my precious sunshine.....
They went down on her drips yesterday and today. She is on Morphine for pain and Versed for anxiety. Please pray she does not go through withdrawals like she has in the past and that she stays comfortable. I am trusting that the doctors know what they are doing and not weaning too fast. She is also on phenobarbital for seizures. They have to adjust the levels of this according to how much she needs so they take her blood to test the levels ever so often. She is also on blood thinners which she will more than likely have to take from now on because she clots so easily.
They also have to take blood to test her blood gasses to make sure she is within a certain area. The better the gas the more she gets to go down on the ventilator. The hope is that she might get to be extubated one day (the sooner the better). This is one of my biggest worries because she only has about 25% of her left lung. One of my favorite doctors shared her suspicion with us that Sunni may have to be trached one day due to not being able to come off the vent. This lady is really smart. Please help me pray that this is not the case. Pray that Sunni is able to breathe on her own one day (sooner than later) and will be able to transition to cpap and ultimately to a nose cannula one day.
She is also on lasix which is a diuretic that helps her pee. This has been working fabulously. She has lost a LOT of fluid and is shrinking back down to her normal size *slowly*. I am not sure of her exact weight at the moment but I will ask after they weigh her tonight. This tells me that her kidneys are still working.
Sunni has never had milk--breast milk nor formula of any kind. She has a continuous drip of TPN (Total Parenteral Nutrition). That of course is not like eating. I am so ready to start feeding her! She is 45 days old today and has never eaten (or wore clothes or cried). In order to eat the stomach bile has to slow down and become less. Tomorrow they are going to see if they can change her repogle to gravity and see how she does. That means the tube going down to her belly is on suction and tomorrow they will turn the suction off. If she handles that we will try feeding. They will stick another tube down her nose and feed her a very small amount of breast milk. If/when this happens the hope is that she will tolerate it, keep it down, and her bowels will "wake up." Last week I was very depressed and sad so I stopped pumping. I really regret that now with the talk of possibly feeding soon. Hopefully I can get my milk supply back. (Any tips would be appreciated).
As far as her brain and development---it is still the same atm. She will have a repeat MRI at some point--probably when she gets a little bit better and gets some tubes taken out here and there. Hopefully she will stop having seizures when the hematoma absorbs back into the body like they think is will eventually. If not, she will be on medication for them from now on. We are ready to take on whatever the future holds for our precious daughter. I know she will not be a typical child in any area and that is ok.
So that is the highlights for now. I hope that this is a better explanation of what is going on with her. I know that last blog was crazy. lol I went back and read it and couldn't even understand what I wrote at times. I am still blaming my pregnancy for my loss of memory and difficulty communicating :)
I want to thank you all for the prayers. I know I say it every time but I love you all and appreciate them from the bottom of my heart. For specific prayers you can pray for her lungs to continue to improve and be able to go lower and lower on the vent, for her pain to stay under control with the lowering of her drips, and her bile to lessen so that she may get fed soon. These are my top 3 prayers right now so please join me.
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| Sunni & Cooper, her biggest big brother :-) |
So awesome to see the improvement! Keep fighting Sunni!!!
ReplyDeletePennsylvania sends prayers for your entire family: prayers of praise for a beautiful daughter and two awesome sons, prayers of strength as you face uncertainty, and prayers of thanks for all the souls whom you cherish. Keep going, baby girl!
ReplyDeleteOne thing that worked for me to get milk back after a pumping hiatus (for my surgical needs (cancer) when my son was 4 weeks old) was start the process of using the pump again on a schedule (every 3 hrs, whatever), drink lots and lots of fluids/water, and pump right after a warm/hot shower. The nurses told me that the warm water of the shower helped the milk "come down" and was easier to get started producing again.
Happy Thanksgiving!
Milk producing ideas: real oatmeal, beer :-), mothers milk tea, fenugreek, there are other herbs as well so ask your vitamin store person, google lactation cookies, pump every 2 hrs around the clock - even if you don't feel full, drink tons of water...... these are just a few. There are also prescription meds if you desire. My dear friend is a Doctor of Breastfeeding Medicine - meaning she is an MD who ONLY deals with breastfeeding moms and babes. She has a facebook page with tons of tips and you can also ask questions and she will respond. It is Mississippi Breastfeeding Clinic, or you can find her on FB at Rebecca Buchanan Saenz. I hope this helps somewhat.
ReplyDeletePlease know that we are praying for you all. Also know that the entire Reeves family has changed me. I hug my kiddos a little tighter these days......
Oh, also! I am not sure if you know Devon Mickler Roelle on FB, she is one of your friends (!), but her son Camden had to be teacher, g-tube, went home on a vent, etc. If you should need guidance from a fellow CDH mom who has been in your shoes, she is amazing. Her sweet Camden had an undiagnosed CDH and was born at home......
We love you all!
Whitney, I am tearful reading your blog post, awed at your gracefulness. I know it probably doesn't feel like that but this is what grace looks like. It's some hard core stuff! :) I know what it is like to lose hope and I often felt guilty about that but then I realized it's not the same as losing love. Oh no, not even close! The dance with hope is difficult, precarious, but the love part is steadfast.
ReplyDeleteYou've already gotten the tips I was going to mention about getting your milk supply back. There should be a lactation consultant in the hospital - ask your ICU nurse for a referral if you haven't already met with that person.
We got very very close to the trach too. In the end, Samuel didn't need it but I did connect with other CDH families who had trached kiddos and it helped me a lot. Whatever your baby needs, you can do it, mama.
Sending strength to you.
Corinne