April 24, 2017

What a week, So we were discharged last monday and Arlyn came home hydrated and switched to Nutramagin fortified breast milk. We followed up with our primary care on Tuesday and decided to do a trial this week with arlyn where we only fed her breast milk to see how she does, if she has weight gain and how she does with bottles. So the beginning of last week started off strong and after 5 days we no longer were using her NG tube at all. She was doing well with medication and we pridefully were able to leave the NG tube out. Today monday we hit a little snag, I don't typically wake Arlyn up to eat on overnights, she wakes up on her own and eats and goes back to sleep. Last night Arlyn went to sleep at 10 after a fresh diaper and then woke up at 0530 still dry. She didn't eat and although she was pretty hunger it made me nervous. By 11am she had only had 2 diapers since 10pm the last evening so I called cardiology and we decided to see how today went, I have a primary care visit scheduled for tomorrow morning. Arlyn is still eating ok but I did notice the vomiting increased a little bit by this evening, quite a bit more than baby spit up. Prior to breast milk only she was averaging 405-445ml of fortified breast milk in a 24 hour time. After with just breast milk she is averaging 605-745ml in a 24 hour time. Today she was able to consume 545 ml. With a normal baby I would just think that today was a day for her to catch up on rest and not eat as much, I wouldn't worry about the incidentals but this baby is not your typical baby. She is amazingly complicated in her own way and I feel like ICU has taught me that the trend doesn't lie. I am hopeful that tonight will be better but honestly I will be waking up at 0000 to wake her up and feed her and again at 0300 just to make sure she is eating enough. I am very worried about Arlyn please say a little prayer for her if you can. 

April 16th 2017

Happy First Easter Arlyn! We are spending our day at Galasano Childrens hospital. This week has been trying. Arlyn started with a cold last weekend and it quickly escalated to a barking cough with mucus and spiting up by Wednesday. On thursday I noticed her vomiting was worse and by Friday Arlyn was vomiting 50% or more of what she was being feed either by mouth or through her NG tube it really didn't seem to matter. On friday Scott and I has ran out to by food and while in the grocery store Arlyn vomited a large amount. At this point I was done we called the primary care doctor and went in to be seen 10 min later. After talking to Dr Wilson about what my concerns were, ( decrease in wet diapers and not as good of a "Lasix Diaper" as normal, vomiting and inability to quantify but believe about 50% or more of her feedings and her increased lethargy) we were advised the safest bet was to go to strong hospital. Arlyn never had a fever although while spot checking her temperature there were border line temp like 99.8 with elevated HR 170s and Resp Rate 50s.

Scott and I decided it was better to get Arlyn checked although this time it was a bit different because Christian and Luke were at home so Scott stayed back. Mommy and Arlyn went to the hospital on Friday and were admitted with suspected Right Upper Lobe PNA and dehydration. We settled into 8 North, room 10 with Grandma Tic Tac in toe. Arlyn at this point was eating 25 to 30 by bottle but continued to vomit so was switched over to continuous breast milk only tube feeding for gut rest. She revived IVF for 12 hours to catch her up and started on Ceftriaxone for PNA. After 36 hours no growth on her culture made the team feel like it may have just been atalactisis (fluid) on her chest X-ray, she had gotten 2 doses of her antibiotic and overall looked better. Her HR had come down to 140s-150s and her oxygenation was better 99-100 vs the initial 88-92 when we first came in. We restarted lasix and now are at a point that we want to assure Arlyn will tolerate feeding when we go home.

The plan for today is to restart fortification and maintain the continuous feeding until this evening. then we will try to start bottle feeding like we wood at home to see if she tolerates it. We may be able to go home late in the day today or tomorrow. Although it feels like we are loosing progress we really have just hit a snag in the road. Cardiology explains that with cardiac surgery patients the common cold can even tip her over the edge. We cannot keep her away from everything but the first year is going to be challenging. Although I think it already is…

April 9th 2017

It has been another week for Arlyn's success. We visited Cardiology the beginning of the week and she looks great, they increased her feeds and it was a struggle and we backed back off a bit because she started to vomit more. I am happy to say that overall this weeks Arlyn has made progress with her feeds, generally taking 30ml-40ml in a bottle and finishing the rest in her NG tube. I was very proud today when Arlyn took her first bottle all by herself at 2100 tonight. I was pleasantly surprised because the last few days she has gotten a cold, no fever but a pretty nasty cough and i have started intermittent chest PT because she sounds a bit congested in her left lung. I am hopeful that this will clear and we will move forward in a few days. She has really slept a lot today, more than usual and overall eaten less but I feel her priority is to eat, grow and heal.

On tuesday night Arlyn gave me a scare and pulled out her NG tube a little bit but I was able to place it back in quickly and rescuer it. I love this little girl so much but she has definitely put me in a position of sleep deprivation this week. She is quite alert during the day and during the night she hasn't felt good so she has wanted to be held and awoke more frequently. We went down to bowling and hung our for 1 hour just to see everyone and let them meet Ms. Arlyn and we were so overjoyed everyone could meet her.

This week with the boys we were able to celebrate a bit for Calogeros birthday, Christian and Luke both wanted to decorate a walking dead cake for Calogero. I was really happy to enjoy all of my children this weekend but also a reality to how difficult it can be with a special little girl like Arlyn

April 3rd, 2017

It has been quite the first week home, our family is slowly adjusting to Arlyn and her needs the best we can. It has been overwhelming for everyone in their own way. mommy and daddy have been supporting each other so each of us can get some uninterrupted sleep and although we had a few hiccups this week overall Arlyn looks good and is doing exactly what she should, eating, sleeping and growing. We had our first visit with the primary care physician this past week and Arlyn gained weight although not as much as she was gaining int he hospital but by wednesday evening we found a medication error on her med sheet where she was getting double the dose of Lasix but shouldn't have been. Mommy called cardiology at 10 o'clock at night and talked to Carol Buzzard on the phone and she felt if she looked ok it was ok to wait and see how it went. The next twenty four hours she had less wet diapers but has since has done ok. Then miss Arlyn pulled her NG tube out and mommy had to put it back in she does ok with it although it was uncomfortable initially.

Arlyn is a good sleeper, so good she still forgets to get up to eat. Prayers appreciated for her continued bottle feeding to be increased, we have hit a plateau with her eating and she usually only bottle feeds 25-35ml at times she has a hard time with even that and will need the rest by NG. I really hope that Arlyn will not need a G tube but honestly it is all up to her and what she is capable of.

The boys all got to enjoy Arlyn this past weekend. The little boys got to hold her and give her kisses for the first time. Luke was funny constantly running around and saying "Im going to pet him, she's my friend" Christians huge heart was apparent for his sister and he constantly was my helper though out the day and always wanted to be around Arlyn. The bigger boys also had a good weekend with the baby and together we tried to maintain the chaos of our household and added a little crying baby that demanded moms attention. Overall a good start to home together.

Really hope for another good week ahead. Our first follow up with Cardiology is Tuesday the 4th, we have visiting nurse coming wednesday for weight check and early intervention is also coming. Kolby has a meeting at Boces on Wednesday afternoon for projection of his 10th grade year. Busy week and from here forward I will try to update the Blog about once a week for all those readers out there who want to know what is happening to baby Arlyn and our family. Love you all.