Posted (Tina) in All Posts on February-22-2008

Last night, Ella did not have a restful night of sleep. Every 15-30 minutes she was crying between 12am and 5:30am. Finally at 5:30am, I gave up and called it a new day.

Ella continues to be lethargic and not much like herself. Her teeth continue to plague her at all hours. It is tough because the teeth do not even appear to be breaking the surface of the gums which means that this stage could last awhile.

Today, she had her first appointment with the occupational therapist. Unfortunately, she was tired and cranky so we did not make much progress. The main focus of the therapy is to get her to make progress on oral feeds.

I did learn some tips/techniques from the OT and discussed the upcoming week. I tried to advocate that Ella needs more than 1 session per week, especially at the beginning. Although I can learn from the OT and implement throughout the week, it is tough to grasp the best practices from the OT if Ella is fussy and not in a great mood. So most of the request for frequency is to make sure that the OT can catch Ella when she is in a good place, so we can optimize the time.

Our homework for this upcoming week is to dip the binky in formula as much as possible to get her used to the taste. When we tried this today, she liked it. The OT talked about bringing a small bottle with a slow flow nipple to the next session so we can slowly introduce oral feeds. When we see Dr. Kays on Tuesday, we will verify with him how much breast milk can be used for the oral feeding (since we received a donation from Par’s mom recently!). Since Ella is so marginal, we feel the need to ask him and devise a plan with his input.

This evening, Josh and I got the sense that we should lead the forward progress when it comes to Ella’s oral feeding. So we started by dipping the regular bottle nipple in the formula and letting her get used to the bottle. She mostly moved it around in her mouth. A few times, she did suck and swallow the formula which was great. She probably took a total of 2ccs over 30 minutes, which is a minor amount, but significant for her. Along with her success, she did retch a couple of times which was tough to experience. We hope to try this each day when she is in a good mood and see if we can make further progress.

Unfortunately, there are no services that come to the home and focus on the physical therapy, but it is something that Ella needs. She definitely has catch-up to do when it comes to her physical skills (this is reasonable considering that she was in the hospital for 6.5 months, mostly laying in bed). We plan to contact the OT therapist from the NICU and ask for her recommendations. Although we will have to get in the car and go for treatment, we know it is a really important component for Ella’s recovery.

Feeling the love today for Josh was getting together with Matt for lunch (friend from NICU 2). Him and his wife Abby have been amazing prayer warriors for us. Also, when we were readmitted to the hospital after the initial NICU experience, they delivered presents for Ella, baked goodies and a pillow for me (they knew that the pillows at the hospital are not great!). All in all, we feel so blessed to have met them in the NICU 2.

Feeling the love today for me was all about Nurse Marla coming over. This afternoon, she came over and played with Ella. It is fun to watch them together because they both love each other so much – – she is definitely Aunt Marla to the Bun.

While Josh was working, Marla watched Ella and gave me the permission to take a nap or get out of the house for a bit. Although sleep deprived, I opted for the freedom and fresh air. I took a 1.5 hour break by grabbing a coffee and getting a manicure & pedicure. It was so nice to escape!

Along with the babysitting, Marla brought over dinner for us – enchiladas and spanish rice as well as muffins for breakfast. We had the dinner tonight and it was very good. There is enough for leftovers tomorrow too! She went through her movie library and loaned us some movies to watch. Finally, she brought Ella lots of presents which was so sweet (everything from bunny ears for Easter, a flower headband, a new onesie, some books, interactive musical piano toy, etc.). Honestly, I was overwhelmed by her generosity. I tried to express my gratitude but I am not sure if she realizes just how much that meant to both me and Josh. She is going to come and see Ella this upcoming week too – – we’re so excited.

For Ella, feeling the love was visiting with Aunt Marla plus getting an email greeting from Par. Click here to listen. It is hilarious!

So although Ella did not have a great day, we were feeling the love. The support of those close-by along with all the posts and prayer coverage by many made such a difference to us.

Thankfully, Grandma Eusey is planning to visit tomorrow evening and will be around for 10 days. It will be great to have family support to further help us during this tough time with Ella.

Once again, thanks for all the support and prayers.

1 John 4:12
No one has ever seen God; but if we love one another, God lives in us and his love is made complete in us.

Debbie Bennett on February 22nd, 2008 at 9:46 pm #

That greeting is the funniest thing I have ever seen!!! About the bottle thing- remember it’s all baby steps. Just don’t give up or lose hope. We love you guys. – The Bennetts

Char and Jim Jordan on February 22nd, 2008 at 10:06 pm #

The monkey is wonderful. Tickled me silly. We are so glad that you have such wonderful friends that know what you face each day. LOL Jim and Char

Adrienne - Melissa's sister on February 22nd, 2008 at 10:46 pm #

HA! Gotta watch Par – sounds like he’s bustin’ a move! You know they’ll probably be friends for life after sharing this experience together… something about the tough times makes those relationships so deep and grounded.

Williamsburg on February 23rd, 2008 at 7:18 am #

Is there anything better than the TLC of a good mani/pedi? Guys may not get it, but we girls all do. SO glad you got to get out and be pampered yourself a bit, Tina, even if for a short time, and please send the thanks of those who love you along to Marla, too – it has been so hard to watch from afar, and so nice to know there are those who are close who are there for you during the toughest times. Hang in there, little Bun – you’ve come thru so much, and we know you will survive the teething as well. Love and major hugs to all. XOXOXO

Joel Snyder on February 23rd, 2008 at 7:48 am #

Ella, I hope that you are feeling better today. You are one lucky girl with Aunt Marla visiting you and that handsome Par trying to get you to the beach. You must say hello to your Grandma for me. You will have a nice couple of weeks with both of your Grandmas. Josh and Tina you are both blessed to have such good friends in Matt and Marla. Try to keep up the good fight I know you will. Love, Grandpa!!!!!!!!!!

Fran Jarrett on February 23rd, 2008 at 11:44 am #

So happy to hear that you both have had some time with your friends and are going to have a visit from your Grandma Eusey.
The message from Par is so cute I listened to it several times as I am sure many others did!
Ella you are such a trooper I am sure you will add teething and feeding to all your other milestones!

Eli Brown on February 23rd, 2008 at 12:26 pm #

My 3 year old son Dominic asked to see “the baby” on the computer today. He knows I check daily. He sends his love and kissed her picture. We are glad you had a good day.

The Rainey Family on February 23rd, 2008 at 6:37 pm #

We are happy to hear that you both got little breaks today. Ella is adorable as ever, and that monkey greeitng was so funny! You both are doing so great as parents, I admire your strength and your faith!!

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