A Different Kind of Flower

For my sweet Josiah...

A Different Kind Of Flower

She had been so depressed after the birth. Depressed and guilty and 

angry. She had been so good all through the pregnancy; it just wasn't 

fair. Her baby wasn't perfect. Her baby had a cleft. 

The front door closed in the other room. She knew her husband was home. 

He was later today than usual. Looking up, she saw him come into the room. 

He held out to her a gorgeous bouquet of roses. But wait, among the roses 

was one lone orchid. It was a beautiful orchid. With splendid color and 

plump. Lush petals, different from all the other flowers in the bouquet. 

She looked at her husband and stroked the errant bloom. 

"What's this?" she asked him. 

"Honey," he said as he sat beside her, "this flower is our son. Every

other baby in the nursery had rose-bud lips. But his lips were open, like

the petals of this orchid. Everybody else had a rosebud, but we had the only

orchid in the bunch. I just wanted you to see how beautiful an orchid is,

even among the rosebuds." 

She smiled. The orchid was beautiful after all. How could she ever had 

missed the beauty of the orchid among the rosebuds? 

- Joanne Green 

Josiah at this point. :)

For His Glory,

An update at Tufts Medical

Well we finally made it to Tufts Wednesday afternoon and I didn’t get lost! Woo-hoo! Though it’s good thing I had the written directions, not sure where GPS was trying to bring me. ;)

We immediately went to cardiology and Dr. Zilberman was there, so nice to see a familiar face. There are 3 cardiologists through Tufts floating in Lawrence; he was the first one we saw and my favorite. He helped me get Savannah and our stuff up to the inpatient floor and made sure they knew what we are here for, etc.

On the monitor waiting...

Let me tell you, they move quickly here! Wow! They got everything done within the first hour or two! I was told they wanted to take blood to test her iron, electrolytes, etc (due to the diuretic she’s on), put an IV in and an NG Tube, plus a chest x-ray to see the tube and fluid amount. I was TOTALLY unprepared when they came in the room to put the IV and NG Tube in back to back, listening to them talk, I didn’t think they were going to do it in the room. They suggested I leave the room…I selfishly wanted to I wouldn’t hear her scream. But I couldn’t leave her! Honestly, I know its minor compared to SO many things. But it was incredibly hard to hear her scream and gag as they didn’t everything!

Exhausted after all that screaming, but it's in!

After they got the IV and tube in and the x-ray done we spent the next few hours meeting various specialists from departments that are helping her. What are really liked was this morning they had what’s called a “family medical circle,” and the various doctors and specialists come in and stand in a circle in your room (then we sing and chant…j/k J) , they go over everything making sure they are all on the same page (Tufts is a training hospital so they train meds students that way). We go over any question I or one of them might have, set goals for the day and what our game plan is for Savannah over all. I was able to take notes and ask any questions I might have.

Mom, there's something down my nose!

She had a hard time with the first tube feeding. I wound up holding her through it as she gagged, cried and made faces. The next feed she gagged when I nursed her, but was better with the tube feeding. We are all excited and I am thankful to the Lord that she is doing great with both nursing and tube feeding. I can’t imagine either one must be comfortable with a tube down your throat! This is why I didn’t want her to have to go through having an NG tube. She is struggling though with getting tired a lot faster when I nurse, plus she isn’t nursing nearly as long. We will be discussing that today. Praying that it’s just due to the tube in the nose and will improve after it’s removed.

Look how cute I am! My nurses just love me! :)

We have her on a schedule (basically the same as Josiah), every three hours she gets fed 2oz via tube while I nurse her before hand.  Skip the 3am feed so we can get some sleep (midnight is going to be hard though). I will meet with nutrition and come up with a ratio for 24 calories before going home. Whether it’s directions for straight formula or fortified breast milk, so that I’m prepared. I’m training to listen with a stethoscope before each feed to check that the tube is still in the stomach.

Her lab results where great! She is not anemic at this time and everything else is within normal range. We have to keep an eye on fluid levels in her lungs due to the increase in fluids. Last night her oxygen was dipping a bit, but it’s gone back up (Thank you Lord) and she is off the monitors now! J

Missing my family and the noise, so I'm hanging with mommy.

They are still talking and planning for open heart surgery. The cardiologist all agree her congenital heart failure is not really showing signs that it will completely close on its own. Yet they say they have been completely surprised before, so we shall see. Though we are praying she will be spared surgery, we are thankful to the Lord for knowledgeable surgeons and previous parents paving the way for us! The Lord is so good and we are grateful no matter how HE chooses to heal her heart!  I know I was asked about her heart…she needs to gain weight for two reasons (other then just growing). She has to weigh 10 lbs before they will attempt surgery. Also gaining weight and getting bigger will help her heart not strain so much and can help aid it in closing the hole. Weight gain issues are common in babies with Down Syndrome.

I believe that covers all the main areas that I know so far I am waiting for our “family medical circle” today, I will know more then, but I do know the nurse is preparing us to go home today (though we haven’t gotten the official orders yet)! I am exhausted at this point, but SO thankful to the Lord, that everything is going well!

For HIS Glory,

God be my Strength

Cooing and smiling at mom!

Yesterday we had Savannah's Cardiologist appointment...I was not looking forward to it. I knew weight gain had been slow. I even contemplated canceling the appointment and rescheduling it for a later time, in order to give her more time to gain weight...but I didn't.

I met the third and last cardiologist. She was very nice, I liked her immediately! I appreciated how she treated me as an equal and spent time explaining everything and answering any questions I had.

She explained that she is concerned about Savannah's weight gain and how the lack of weight gain actually put more strain on her heart. She showed me her chart and how she has slowly fallen off the chart for her age. As she put it, "she's wasting away." Though Savannah HAS gained some weight since birth! She is at 8.4lbs at this time...that is way below what she should weigh though.

It's our little "peanut"

I asked about waking her several times through the night. You see Savannah started sleeping through the night! Every mother's dream, right?! Nightmare for me though!! Besides who in their right mind would wake a sleeping baby?! ;) She is so exhausted from just breathing (it's a workout on it's own, nursing even more so), that she sleeps a lot. Waking her would not allow her body to get the rest it needs and breastmilk alone does not supply enough calories. She burns so many calories that we really need her to take a bottle with fortified breastmilk (which I, hate, hate, HATE...I don't want her on formula, even just a little), but she wont take a bottle even for the therapist and she's not getting enough through the syrenge! I would have to feed her all day with it. Which I do spend the majority of my afternoons doing just that.

Needless to say, unless she took a bottle there is nothing else I can do except have an NG Tube placed. The NG Tube is the issue I feared and dreaded the most (besides OPEN HEART SURGERY) and now we are facing that. Josiah use to rip his out ALL the time in the NICU! Augh!! At least she can still eat if it gets pulled out until a nurse can put it back in.

We found out Friday that the health insurance will not continue covering for the VNA nurse to come out for weight checks. The doctors are NOT happy and disagree with that decision. So her coming home with an NG Tube should get that started again, since it WILL be medically necessary (we hope!).

So the cardiologist asks if I will need time to get all my "ducks in a row" before. I like of course! I have 3 other kids I have to get situated. I start to tell her that next will be REALLY difficult to find help, but if she gives me a few days, I can probably figure something out. Her response..."No I mean this needs to get done. As in I want her admitted tomorrow (Wed.)." Umm...Does she have kids?!? HAHAHA! All I can still do is laugh at that! She wants me to be at the hospital for a few days and all I'm given is ONE afternoon to get this ready!! :p 

Hanging out with Naomi. :)

SOOOOO needless to say, I'm just as stressed about getting everything situated as I am about the procedure!!  God has provided help for at least today and I'm getting ready to head into Boston. All I can do is hand this over to GOD, HE is in control and is my strength, my help, and my comforter.

The adventure begins....


For HIS Glory,