NG Baby

Poppy had a great cardiology appointment this week!!! Thank you Jesus!! Her physical exam was great! She is now 15.5lbs and in about the 45th percentile for height, weight, and head circumference!! Dr. Law said she looked ‘beautiful!’ This is actually really good coming from Dr. Law- he is very careful with his words, and is not known for saying things just to say them… 😀 And no rejection!! Praise God!! Feeling so incredibly blessed!! 🙂

At the appointment, I asked Dr. Law about moving her feeding tube from her small intestine to her tummy, in hopes that she would tolerate it, thus one step closer to weaning off the tube. He asked me if I thought she would tolerate it, and I said ‘I really do-I think it’s worth trying!’ He said ‘ok!’ The next thing I knew, the transplant nurse was in to make the adjustment!! She did great and is doing amazingly well with the change!! Woohoo!! Hallelujah! We are also down to every 6 hours on her hydromorphone wean!! She is doing so awesome!!

We try to practice purée 3x a day and she takes anywhere from 2-4 baby spoonfuls each time! I know it doesn’t seem like much at all, but for her right now, it is her max. We just keep practicing…it seems like each day she shows is something new- it’s pretty amazing.

Right now, we are really trying to focus on head/neck strength, so much to her dismay, we are doing a lot of tummy time. She’s also getting good at bringing her hands up to her mouth and sucking on them a little!! Brad tried a teething ring and she loved it! She’s becoming more verbal and offering more smiles everyday- it’s just so cool to see her flourish 🙂 Thank you Lord- You have made this all possible!!!

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Purée

Yesterday, Poppy got to try some sweet potatoes at her OT appointment, and did pretty well!! Praise God!!! At first she wasn’t thrilled to be practicing her oral skills, but after she got a little taste, her ears perked up, and she did pretty well for her first time!! It was pretty cute! 😉

We practiced again today, and she did so well, I got excited and ended up feeding her too much-she ended up vomiting all of it up 😦 I forget that she’s never really had anything in her tummy before, so what seems like a small amount is actually quite a lot for her. At least now I have an idea of what will be a good amount to start with, and work up as she is able!

We also practiced her Haberman bottle today, and she did great with that as well!! Thank you Jesus for these productive few days of oral feeding!! It’s going to take lots of time, patience, and consistency before she will be able to sustain herself without her feeding tube.

She is also doing a great job with her head control and hand grasping skills!!! She has also been cooing and smiling up a storm!! It’s awesome!! We are totally eating it up!! So so fun!! 🙂

We are praying that at this weeks cardiology visit, Dr. Law will give the ok to pull her tube to her tummy to make her NG. For her to be able to tolerate her feeds in her tummy (NG), would be one of those necessary things needed to happen for us to be released home to MT. With her tube where it is (ND/nasal duodenum/small intestine), if it comes out, we have to have a nurse place it and have it checked by x-ray. If her tube is NG (nasal gastric), then I will be able to place it and check placement myself with a stethoscope, if it should come out. This is probably one of the biggest things that would keep us here longer, and needless to say, we are ready to come home!!

Please pray for patience and wisdom as we tackle this great challenge. She is already doing fairly well, and we are rejoicing for that!! Thank you Jesus!! Also, we would appreciate your prayers for direction as we seek and anticipate what God has in store next for our family!

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‘Comfy,Cozy’

Poppy came back to her room about an hour ago. She seems to be pretty relaxed and sleepy, thanks to some extra sedation during her post op CT and shunt series X-rays-she is resting ‘comfy, cozy’ as our good friends in the CICU call it! 😉

Upon arrival, the nurse had noticed her pupils to be big and reacting much slower than her baseline, accompanied by lethargy. Maybe it’s because she just had brain surgery, you may say, but typically she is out of anesthesia by now, so just to be thorough, neurosurgery was contacted.

This is when we were told of her needing some help relaxing in CT, hence the additional sedation. The neurosurgeon resident seemed to be very pleased with the post op CT scan and is pretty confident this pupil thing is completely sedation related. She will of course, be monitored very closely tonight. She now has a vp shunt on either side of her head, completely independent from the other. Praying she is set for MANY many years to come!!!

We are praying for a peaceful night of resting ‘comfy, cozy.’ And….for a chance at discharge tomorrow?!?! Hey, you never know?! All things are possible with God, right?! 😉 Thank you all for continuing to hold our family so closely in prayer. It means so much to us. It is so encouraging to be able to read through all your comments as we wait- it encourages us to seek Him out and attempt to give all worry over to Him, so thank you!! And thank you Lord for what the neurosurgeons are calling a successful trip to the OR!! Can’t wait to see our girl back to herself, ready to play and tackle binky training, now that her brain is back in working order!! Praise God!!

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2 Shunt Girl

Poppy had a fairly decent night considering. She had a couple hours of restlessness, but seemed to be soothed by a little Tylenol. Over night, her heart rate began to trend down (aka bradycardia). Typically fast asleep, her heart rate is 120, it’s becoming a trend when this ventricle is growing/acting up for her heart rate to drop down to 105ish fast asleep, and that’s what started to happen over night. So far she has been sleeping the day away, not even waking for vitals as usual, this ‘hard to wake’ thing is also another indicator something is up. Her pupils are reactive, just a little slower-so we are very thankful we are here and admitted as these other signs of trouble are starting to show up. Thank you Jesus for direction.

The board of neurosurgeons discussed Poppy’s case and history this morning. The decision was unanimous- this enlarged ventricle (what neurosurgery is calling a cyst) needs a shunt. Scan after scan- day after day-there’s just simply too much data that supports her needing an additional shunt. So she will keep the one on the left and have the additional shunt placed on the right.

There are 2 ways of doing this. 1. They could use an additional catheter and tie in to the existing shunt on the left side or 2. They could set up this ‘cyst’ with its very own shunt system. The decision was made to give it it’s very own shunt system- from her head, down the side of her neck, to her peritoneal space (just like the one she has currently on the left had side). Having 2 separate shunt systems has its benefits for diagnosing (heaven forbid) future malfunctions, by making it obvious which one is having the ‘problem,’ but having 2 shunt systems also doubles the chances of possible malfunctions. She is an ‘add on’ case today, meaning anytime this afternoon they will take her to the OR. Praying praying for a successful trip to the OR and humbly pleading this to be her final trip for a good long while!!

In other news, that I just have to reiterate, because it’s a PRAISE for sure, is the fact that Poppy still has NO signs of rejection!!! She is absolutely LOVING her new heart!!!! Woohoo!!! Hallelujah!! Thank you Jesus!! The heart failure team made the comment today at rounds that definitely, had Poppy had needed all of this surgical attention prior to her new heart, she would not have been able to handle it. Thank you Jesus for providing a new heart for Poppy at the perfect time, before Hydrocephalus was even found- it is physically providing her with the strength to get through all this extra shunt stuff. Pretty amazing…

Please pray for a successful day in the OR where God’s presence is made known and our girl comes out looking and feeling great with no concern of infection!!!

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Prayers for Friends

Poppy made it home yesterday- praise The Lord!! We are soo enjoying being together once again. And while we are here, soaking in some glorious family time with my parents in town, Poppy has a couple friends still in the CICU, desperately fighting for their lives.

Please please keep Oskar, Adrian, and Michael in your prayers. They are in great need of your fervent prayers for healing miracles and new hearts. Their families need prayers of peace and comfort as they anxiously wait on The Lord’s perfect timing-a fighting chance at life for their sweet babes.

The waiting days are days we will never forget and will never miss, our heart breaks for our dear friends as they are living moment by moment. God’s grace is the only thing that got us through such trying times- Lord flood the CICU with your grace and presence and surround these families and darling babes with your divine peace.

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