One Month Old

Today Rebecca is one month old. We have had a steady ride during this last month. We have been patiently sitting at the hospital waiting for our little peanut not to be so little anymore before her first procedure. She had to hit the 2 kg mark before having her cath to determine what route is her best viable option. While we wait for her to grow, she will work on taking a bottle to wean her off the NG tube.

During this past month she has made progress with her feedings and tolerating the food increases well. We are up to 36 ml (~ 1 oz) every 3 hours that is 26 kCal fortified (breastmilk is only 20 kCal so they put in milk fortifier and protein to get the extra kCal for weight increase). Speech pathologists and occupational therapy having been working with her daily on eating from a bottle. On a good day she will take 5 ml at two different sittings with them. If she does this, then the next day she won't take any because of the amount of work it exerts on her body to try to coordinate eating and breathing. Each day is a different day on how she feels and how much she energy she has to work. Two weeks ago we had our first attempt at breast feeding since she was doing so well with taking a bottle.

She did end up latching which was the best feeling in the world! This is what we were working towards and to have that positive outcome was so emotional. The lactation consultant and I were both shocked at how well she did. It was a huge victory that day and I got permission to put her to a pumped breast once in a 12 hour shift while she was being fed through her NG tube to help her connect. I did this at least once a day and each day she became better and sometimes ended up actually nursing for a brief moment. There are no words to describe how this makes you feel as a mom and to have that connection that you have been wanting since giving birth. It is very hard work not only to get her to latch but to also pump constantly for her every 3 hours. It takes a lot of determination and discipline to keep on top of pumping.

On January 26, at exactly 3 weeks old Rebecca hit her goal weight of 2 kg. Everyone in the CICU was so excited to hear the news that she was getting her cath scheduled. Turn out to be scheduled for February 3rd. The people that had had her when she was first born kept stopping by to see her and her weight gain. The following days were also a big deal for her as she was upgraded to a different giraffe bed. NO more incubator!!

Incubator top open to see if she can hold her own temperature for 24 hours. They do this before moving to a different bed to see if she can tolerate holding her own temperature. 

January 26th was her first day in her big girl giraffe bed. Such an emotional day for all. So many people around the CICU came by to see her and her upgraded bed.

January 29th was Daddy's first attempt at bottle feeding with the watchful eye of speech pathologists. Very tricky feeding Miss Rebecca since she has to be paced. Only can take 4-5 sucks at a time with a break in between each spurt. 

With special permission, Annabelle was allowed to visit Rebecca before her cath. Annabelle thought Rebecca was a baby doll and kept offering her blankets, her wubbanub and her stuffed animals. Loved seeing Annabelle interact with Rebecca. 

The very next day on February 3rd, Rebecca went for her cath procedure. I was a nervous wreck. I hid it very well and kept my emotions under control so she wouldn't get worked up either. I was so anxious waiting on her going back that it seemed like it took forever. They came and got her after 3:00. During that time, I finished up her Wonder Woman blanket to keep my mind off of the cath procedure as much as I can. They called throughout the procedure with updates and it was all promising. The calls kept coming in and so did the good news. We got the news that her coronary ateries were ok and that they were going to proceed with attempting to puncture her pulmonary valve. We got the call that they were all done and the news that it was a success. Her pulmonary valve is now open but her right ventricle is still small and needs time to try to grow if possible.

February 3rd was an emotional roller coaster. After not knowing what was in store for her to finding out the good news to seeing your daughter incubated is something that I won't ever forget. Seeing your child lying incubated is very upsetting. 

She remained incubated until the next morning.  I was so thrilled to have her excubated and be able to hold her again. Her prostaglandins were turned down to compensate for opening up her pulmonary valve. Rebecca was more awake yesterday then she has ever been which was nice to have her be more aware of her surroundings.

Unfortunately last night, Rebecca's O2 stats started to drop down. In order to help her out they decided to give her an IV fluid bolus which seemed to help for a bit. They kept giving her more bolus' but it never lasted. They made the decision to give her a blood transfusion to help. This also helped out for a bit, more so than the IV bolus. We are currently back to giving her IV bolus with her being on 3 L of oxygen through a nasal cannula. It is an uphill battle we are facing trying to get her to use her right ventricle if possible. As we wait for that to happen, they will be watching her closely for her O2 stats. We will remain in the CICU until she is able to be weaned off the prostaglandins and her stats are stable. She loves being held today so that means lots of cuddles from mommy and daddy.