Ella had a good day with Nurse Marla. She had a bath, they played and talked. Ella weighed in at 9 lbs, 7.5 ounces.

Due to her weight, they increased the Portagen to 65ccs every 3 hours. Also, they increased the caloric density in the Portagen up to 30 calories (up from 24 calories). Hopefully, this will help Ella gain even more weight which she needs (she is behind the curve for weight at nearly 5 months old). They are still venting 10 minutes before, 30 minutes of feeding, and 30 minutes of venting afterwards. Ella has been retching a little bit at the end of the feeds, but not enough to be concerned. It is just something for us to monitor.

Another HUGE change: they decided to start giving Ella her diuretics (lasix & diamox) via her g-tube. Since her nissen surgery, she has been receiving these meds via the central line. They are switching it because they want to remove the central line by the end of the week. Please pray that she will tolerate this change.

Also, they want to administer infant shots to Ella this week. They want to give her the following vaccines: diptheria, tetanus, acellular pertusis (DtaP), pollo (IPV), hepatitis B (HBV), haemophilus influenzae type B (Hib), pneumococcal conjugate (PCV) or Prevnar, and synagis to prevent Respiratory Syncytial Virus (RSV).

When they drew her blood this morning for labs, her hematocrit count was low (the hematocrit count calculates the percentage of red blood cells per micro liter of blood). So, they ordered some blood for her. The good news is that her potassium has come into a normal range, so they have discontinued the potassium supplement that she was getting. Now, they plan on just administering a multi-vitamin via her g-tube.

The day was uneventful until 6pm. Nurse Marla went to give Ella the blood infusion via the central line and it wasn’t working. The theory is that there were written orders to flush the central line once every 4 hours while Ella was in the NICU 3 and that maybe that has not continued with the same consistency since her switch to NICU 2 a week ago. In any case, after several attempts, they opted to give her the blood via IV.

That took 3 tries on her left foot to get the IV placed properly. Apparently, Ella did not tolerate this whole idea too well. She was upset, fussy, sweaty, saturations dropping, so they increased her oxygen to 1 liter to get her through the ordeal. Although, who can blame her? I am not sure that I would love an IV in my foot (it ended up being in the bottom of her foot. In order to keep it in place, they had to tape her foot to a board. That could not be comfortable!)

When I visited Ella tonight, the transfusion was still taking place and she was resting. Even though she was asleep, her stats did not look great. Her heart rate was 175 at rest and her saturations were 95-97. This is not normal for Ella these days. I wondered if it was due to the blood transfusion, although the nurse was not convinced that the transfusion would cause that response.

To help subside Ella’s fussy behavior from the discomfort of the IV, I held and rocked her for the remaining 30 minutes of the blood transfusion. During this time, I became a bit concerned as I watched the monitor. Her saturations were not getting better, but actually worsening a bit.

Once the transfusion was complete, diaper changed and positioned comfortably in bed, she fell asleep again. Almost instantly, her heart rate dropped to 140-145 with saturations pegged at 100! That is what we have been used to seeing lately. Just to be sure, I continued to watch at her bedside for 1+ hours until I could hardly keep my eyes open! I left feeling assured that she is still making progress and gaining her strength. The decreased stats were definitely tied to the blood transfusion – – thank goodness!

All the changes today prompted a call from the nurse practitioner. If Ella continues her path of steady progress, she wanted to discuss discharge being possible in the next couple of weeks. Can you believe it?!?!? This came as a shock. When I asked the nurse practitioner last Friday (a different one that had been tracking Ella’s file for the past several weeks), she indicated an estimate of 4 weeks. So, this came as such a surprise…but what an AWESOME surprise.

Par is doing really well with his feedings this week. We pray that he will continue to make greater strides forward by the end of this week. Going home soon might be happening sooner versus later for Par too!

Please pray for Ella to continue to gain strength and remain strong in the coming days, so we can take her home for the new year! That would be amazing!

We trust in the Lord for His timing and praise Him for how far He has brought Ella and us.

Psalm 40:2-3
2 He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.

3 He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear
and put their trust in the LORD.