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.