Our New Normal

I’ve obviously not had the time or energy to keep up with my blog during this busy time. I’m going to have to play catch-up and try to remember as many details as I can another time. I can’t believe it has been 2 1/2 months since Eva’s birth. While we had the most positive outlook on our situation and were so hopeful that everything would run smoothly, life had a different plan for us. It has been a hard and emotional rollercoaster ride with little Eva. Things are starting to get a little more stable and we are beginning to settle in to our “new normal”.

Eva has had a rough couple of months of life. She got the trach at 3 days old, had a swallow study where she was able to swallow a nectar consistency (thickened formula) just like Arabella. She has a very weak suck and wasn’t able to drink her full feeding amount so she was sent home with an NG tube which is a tube that goes into her nose, down her throat and into her stomach. We were able to avoid the g-tube. She came home after 2 1/2 weeks on September 4th and the very next day started throwing up. It was so overwhelming and stressful handling a vomiting baby with a trach that I couldn’t take good care of Eva and the girls. My sister-in-law Julianne came to my rescue and we shipped the girls out to her in Missouri for a whole month! That is a whole other post for later though:D

                      Pre-trach                                                            Post Trach                               

 

Between that time and now, Eva was hospitalized for 2 days with possible pneumonia from aspiration which she was cleared of and then put on continuous feeds, which means she is being fed 24/7 through the feeding tube, for the vomiting. It has improved a lot but she still throws up at least 2-3 times a day. I can’t let her out of my sight because I need to be able to see if she is going to throw up. She is at such high risk of aspiration because of the paralyzed vocal cords and the trach. I need to be able to see and hear her at all times. I can’t drive anywhere by myself also because of the vomiting. Every time she is in the carseat she throws up so for this reason I have to be driven everywhere. We don’t leave the house except to go to doctors appointments and church which I have been to only 3 times since she was born.

ER visit #1 for the stomach pain and vomiting

ER visit #2 and subsequent hospital stay. She just happened to be wearing the same pj’s as the first time we went to the ER.

 

Because she wasn’t able to keep down a majority of her milk, she lost a lot of weight. She was born at 7lbs 10 ozs and got down to 7lbs 3ozs when she was almost 2 months old. She has been on fortified formula for the past 2 1/2 weeks. We add extra scoops of formula as well as lipids which is basically actual fat, to her formula and she now weighs 8lbs 3ozs!!!

Eva 3 days ago

Eva has had a virus for the past 3 weeks which means that I have to constantly suction her. This is completely consuming. At it’s worst I was suctioning her every 5 minutes during the day, sometimes more. It is better when she is sleeping but there were several night where I was up suctioning her every 15-30 minutes throughout the night only to continue every 5 minutes during the day. There were obviously gaps where it wouldn’t be quite as frequent but those were rare. Last night was the first night in a long time that I only had to get up to suction her TWICE!!! She is getting better and I’m feeling less like a zombie.

Eva has developed an oral aversion and cries when I offer her a bottle or a pacifier. The trauma of having to put the NG tube in her nose and down her throat every time she pulled it out coupled with the vomiting has made it to where she has a fear of allowing anything in her mouth. You can see in the pictures below just how long the tube is. Its not hard to see why it is so traumatic to have it put back in. We have decided that at this point the NG tube is holding her back from progressing with her oral feeding so we have scheduled a surgery for this Friday to get the g-tube placed in her side that leads straight into her stomach. Hopefully having everything away from her face and throat will help her to improve with eating.

1st time she pulled out her NG

I took advantage and took pictures of her tube free face.

2nd time she pulled out her NG…I lost track of how many times it happened after that. Lets just say I’m a pro at placing NG tubes:(

I think that is everything in a nutshell…all the crappy stuff at least. Now for the good stuff!

In spite of all of the stuff she has had going on she is a very happy baby. There was a time when I thought she had colic but as it turned out she was in excruciating pain from being fed 80cc’s every 3 hours and not at a slow drip throughout the day and night. She was having stomach spasms:( Ever since we made the switch, she rarely cries.

Eva has started smiling! She gives the sweetest smiles especially right after waking up from a nap.

One of her first smiles captured

My girl is so animated! Even though I can’t hear her, I always know what mood she is in by her expression.

As of last week she can support her head on her own. She is just a smidge bobbly but is getting stronger every day.

She LOVES having her head rubbed and scratched. This is great for me because I love playing with her awesome hair anyways so it’s a win win!

Eva’s many hairstyles

As natural as it gets, fresh from a bath

She is, by far, the worlds most loved baby ever! All three of the kids can not keep their hands off of her and are constantly fighting over who gets to hold Eva and who gets to snuggle with Eva and who gets to lie by Eva. She is their whole world! There hasn’t been a second of jealousy over all of the time I have to spend with her. Aidan even told me the other day that she is his best friend.

 

It has been hard and I have had many tear-filled meltdowns but I wouldn’t trade Eva and everything that she is for anything in this world. I wouldn’t trade her for an easy life with just normal, every day stresses for a split second. She has such a strong and sweet spirit that I feel so blessed to have been given her to raise and love. She is the piece that completes our family puzzle. We are all in LOVE with this little angel!