Posted (Tina) in All Posts on January-28-2008

Today was the first day as Mom in my solo role.

Thankfully, I have survived and am here to record the details. Actually, the Bun slept a lot today which was a blessing for me.

Around 10am, Ella finally stooled. This is on track for 1 every 36 hours which is something we want to address and be careful of based on her surgical history. Remember that her bowels developed in her chest and were moved down during her repair surgery, so there is always a higher chance of bowel obstruction.

I don’t sense that there is anything major going on with it right now, but it is just something that we want to watch closely. We can tell that not stooling more frequently, like she was prior, is causing her great discomfort. Because of this, we decided to start using the food pump and doing feeds over 30 minutes versus a bolus feed. She seemed to be getting very fussy right during the bolus feed, so we think that it might be causing too much pressure for her.

Mid-day, I was able to catch about an hour of sleep while Ella was napping. Normally, I cannot nap. This just means that my level of exhaustion was worthy of a nap.

The day was fairly uneventful until this evening when we had to switch out Ella’s nose cannulas. They have to be switched once per week. The actual task of switching them out is not a big deal, however, Ella’s skin is so sensitive that the tape on each side has caused major skin break down over the past several weeks. So, when you have to remove the cannulas, you have to remove and replace the tape. This causes Ella a great amount of pain. The challenge is that they are using the most sensitive type of tape around, Medipore, but it still causes her skin to break down.

So when we went to replace the tape, she had a major meltdown. Yes, she turned that lovely bluish/purple color all in her face. She was very upset and was having a tough time calming down. We had to crank up her oxygen to 1 liter and really spend the time to help her catch her breath again. The pictures for today’s post capture the moments once she settled down and had some Daddy time.

The meltdown moments are a bit scary. Thankfully, we know that the Lord has His hand on her at all times.

Tomorrow is our first pediatrician appointment. We’re anxious to meet Dr. Kathy Sarantos – – we have heard nothing but great things about her. She is another reason that we decided to stay close in Gainesville for the short term.

Honestly, I am a bit nervous on a few levels. Josh will be working so I am planning to go by myself. I am nervous about transporting her with the oxygen tank (which is not light). I’m nervous about driving with her in the back seat. Josh went tonight and bought me a mirror so I can see her from the driver’s seat. I think this will be important for me, especially if she starts to fuss. Most babies you can let fuss quite a bit without any adverse consequences, but Ella can literally get air starved if she works herself up too much.

Also, I’m nervous about going to a doctor’s office with a bunch of kids around (kids are known to be infested with germs) along with adults that I don’t know and trust. I really, really don’t want Ella to get sick. Finally, we are trying to get on a routine of feed times and medicines. Since my appointment is at a normal feeding time, I have to switch some things around to make it work. It just feels overwhelming when I am just trying to get used to the whole thing.

I know that there is really nothing that is worthy of my worry. The Lord will help me get through the day. I just need to surrender and ask Him to provide strength to get through the day, and not rely on my own strength.

Aside from this challenge, I realize that this is what we should be doing each day. Relying on Him and asking Him for guidance to get through the day, so we can make good decisions that reflect who we really are on the inside. And no matter what He delivers for the day, praising His name and giving thanks for all He has ordained.

1 Thessalonians 5:16-18
Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus.

Laura Arneson (Adrienne' friend) on January 28th, 2008 at 9:26 pm #

Tina, you are definitely a full time mom now complete with all the worry. The times when I was overwhelmed with 2 premie twins I did a couple of things to get me in touch. Psalm 139 is the mother’s prayer, you are not alone. No matter how early or sick or “normal” our children are they are first God’s children, He knows them and more importantly at this time He knows you. You are also divinely created for His purpose, this is your purpose. God has already given you all that you need for this moment right now. Another helpful thing was making sure I was well hydrated, I know it sounds crazy but your brain needs lots of water to make it work the best. Drink! You are doing what you have been perfectly made to do with the perfect little girl for you. I will pray you through this night. Also, sometimes softening the “glue” on the back of the tape before removing it can be done with baby oil, unless there is a reason not to use on Ella it may be worth a try. Take special care of yourself. Blessings Laura

Chambers Family on January 28th, 2008 at 9:32 pm #

Wow. What a day! Ella looks no worse for the wear even though the purple part must be scary. You guys are old pros at dealing with breathing issues! Every morning and every night I give my little one a breathing treatment (he is 2) since he had premature lungs at birth and I think about Ella being two and using this new puffer and all the games you will be playing with her to take her puffs – even though they have been doing it there whole lives…. =)

Good luck tomorrow – Josh, go with her!

Dawn Franck on January 28th, 2008 at 9:34 pm #

Hi Tina and Josh, I’m am so sad because I have been in Vegas visiting my parents and I literally just got home from the airport and got Alli to bed so I could check up on baby Ella. I haven’t had computer access for almost a week and I just found out Ella was released. I’m so sorry I wasn’t able to congratulate you guys sooner. I’m SOOOOO happy for you guys. I am doing cartwheels in front of my computer…no J/K, I’d probably rock the house and wake Alli up if I did that but let’s just say I’m beyond excited to hear that she’s finally home with you guys. I know you will feel overwhelmed on a daily basis for a while but it will get easier as you get into a routine. Take care and get as much sleep as you can with a new baby at home. Tina, I hope you are feeling better. All my love, Dawn

Auntie Shannon (forward from a good friend) on January 28th, 2008 at 9:40 pm #


I was ALWAYS nervous about brining my kids to the doctor with sick children. You might want to call ahead and ask if you can go into an office right away or ask if they have a well room versus a sick room. I am sure they will oblige you. Going directly into a room or waiting in a back office is worth it.


PS You are doing great!

Anne on January 28th, 2008 at 9:43 pm #

you two are such caring and conscientious parents, you can’t help but do everything as best as can possibly be done…. sure, you’ll worry, but know that in the eyes of “average” parents (if there is such a thing)… you two are already on a level way above the rest of us. Ella is blessed beyond belief to have the two of you as her parents!

Joel Snyder on January 28th, 2008 at 10:27 pm #

Ella, Just a note to let you know that you look just great when you don’t hold your breath. Tina you are terrific and keep on doing what you feel is right. It will all come togeather and being cautious is O.K. Good luck at the Doctors and you keep on breathing. I will check on you guys later. Love,Grandpa!!!!!!!!!!!!

Char and Jim Jordan on January 28th, 2008 at 10:51 pm #

Hi Tina and Josh, I just read all the wonderful notes and comments from everyone and had to laugh. Tina I think you have heard it all. Shannon has a good point on calling ahead and not allowing contact from others at this time. Explain your situation and I am sure the Nurses will accomodate your needs. If they give you grief hold your ground. I know you can. You are one strong woman. Also talk to the doctor and let her know your concerns. I bet she will make things happen. Not everyone has to wait months to hold their precious baby. Not many stay 6 months in the NICU. It is all so very new now. Soon you will be an old hand at all the shifting and manipulating and scheduling that an infant takes. I was a bit wierd and overprotective for a long time. I just didn’t see things the same way as others. Of course! I was the mom. I had to deal with the consequences that happened to me, after others did their part. You will be great. You will know what is best for Ella. YOU ARE THE MOM! Mothers know. Glad to hear you caught an hour or so. You will get so tired sometimes that you will nap when you sit down. Your Dad can be a great help to you. He is great. Give him a hug for me. LOL Aunt Char

The Lizotte Family on January 29th, 2008 at 5:06 am #

Call the doctors office ahead to see if they can direct you in to a waiting room when you get in. My office will do that with sick kids. You are a brave woman! I’m so proud of you.

tamara tessmer on January 29th, 2008 at 6:34 am #

Tina, Yes call the office, I agree. I still don’t wait in the general room with Evan. You are doing a great job!! I am very excited for all three of you. I am sure you are ready for a little “boring” in your life. Not that having children is EVER boring, but you know what I mean. Have a great week with her. She is still so stinkin cute!!!!

John & Estela Williams on January 29th, 2008 at 7:35 am #

Since the day they told you and Josh you were pregnant… your worries started… and they don’t EVER go away. You are a Mommy and we are suppose to worry about everything when it comes to our children, just trust in the Lord for guidance, understanding and patience. You are doing wonderful and everything will be perfect each and every day, just like the Lord planned it. We love and miss you guys and feel blessed to have you part of our lifes. God Bless.

The Vodnik's on January 29th, 2008 at 8:48 am #

Oh what would us Mom’s be if we didn’t worry! Under the best of circumstances I don’t know of a single parent that doesn’t worry about something with their child. The hardest part, at least for me, was understanding that there was nothing I could worry about that was in my control and to try and release all my worries to Him. It’s an exciting and anxious feeling all at the same time to have them home. Just know that you’re not alone in your emotions and it’s perfectly normal to worry. Hang in there!

Adrienne - Melissa's sister on January 29th, 2008 at 11:22 am #

Wow.. you guys are doing so great! I’m sure it’s *all* overwhelming at this point but it reminds me of whenever you first go somewhere you’ve never been and it seems to take forever and then a few weeks later you look back – you’re going the same place and it seems to take NO TIME! Pretty soon – all this will seem like a snap. You’ll feel like the PROS that you are!

I am so proud of you guys! Your pictures from the last few days are all amazing! They really capture it all! What happy days!

Can’t wait to hear about your day and how the doctor’s appointment went!

The Brittain Family on January 29th, 2008 at 12:44 pm #

Prayin’ for ya tomorrow. Know exhaustion is hard to live with. Was just thinking that the doctor’s office may be quite willing to accommodate Ella’s special needs and take her directly to the examination room rather than having the 2 of you sit in the waiting room while you fill out loads of paperwork. A “heads up” phone call before you get there couldn’t hurt. Would there be someone from the area who could go with you? Keep up the good work! The Lord will go before you!

Deb Carnsew on January 29th, 2008 at 3:31 pm #

It’s been (quite)a few years since I did the pediatrician “thing”, but my daughter (Lori Vodnik)passes along sound advise – you’re doing terrific and sweet Ella is especially blessed to have such loving and careful parents!

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