June 4th 2017

Arlyn is quite the normal developing baby at this point, I don't worry to much about what may happen or what could happen just enjoying the moment to moment. Over the past month Arlyn has been cleared by Life time care and has regularly gained 5 to 8 oz a week. According to her primary care doctor she is developing on the same height and weight curve although she is a 1-3% kid this is to be expected and a healthy situation for her. We also saw neurology this month and they feel it was time to wean back the keppra. So we have weaned from .5 ml twice daily to now .2 ml twice daily that a week from now we should be weaned completely off. Arlyn will follow up with neurology in a year unless she has further problems. So we are down to a few doctors and Arlyn is doing fantastic. I am excited to see Arlyn grow over the next year, she has already rolled over from front to back, she lifts her head up when she has tummy time. We have long conversations and she makes her needs know all perfectly normal for a 3 month old. Daddy and Mommy work with Arlyn talking to her and playing with her so she can grow and thrive and she is.

Arlyn loves hiking and finds cuddled in the baby carrier is exactly where she prefers to be. She absolutely loves bath time and we have settled into a routine since mom is now back to work. Overall She is growing strong and we are all so proud and blessed to have her.

May 10th 2017

It has been a long week or so. Last Monday we had a visit to Gastroenterology and Arlyn was recommend to start Biogia a probiotic to help with digestion and to start her weaning from Mylicon drops. Arlyn has not had her NG tube in a while and has consistent weight gain so the determination was made to clear her from GI and if we need them we will call as needed. On Tuesday we were at Cardiology and had great news that her right Atria no longer had a visible clot on her ECHO so we were able to stop the Lovenox shots. We also discussed stopping Lasix and this week has gone pretty well without the lasix but this morning she was coughing so violently she started vomiting and sounded more course in her right anterior lung field so I called Cardiology and Arlyn will be going back on lasix until friday and we will see how she does. Last Wednesday Arlyn weight was 8 lbs 12 oz and this week she is 9 lbs 2 oz so she gained 6oz which is wonderful.

Arlyn turned over this week twice from belly to back, She is smiling and cooing all day long, Arlyn is staying awake during the day and falling more consistently into a sleep routine. It is so rewarding to watch this little girl grow and thrive and she is doing just that! SO proud of her!!

I officially have 1 week until I head back to work and am looking forward to some time to just focus on my nursing and leaving it at the hospital to be able to come home to my family. We have a few hiccups in the road at home with our water pump in the basement dying and water system not working well but we pray that we get to a spot where our water is working consistently. (the downfall of living in the country)

Thank you for everyones patients in my blogging. We have had a hard time with internet so I am hopeful that we can stay on a weekly schedule. Thank you for all of your continued support and prayers.

May 1st, 2017

So this week has gone quite smoothly and Arlyn is quite her own little person, we were able to make a few visits to different places like Scott and my bowling banquet (Arlyn attended), visiting her sister Journey and niece Genovine every Thursday and I visited my co-workers at highland in preparation to return. Arlyn has done fantastic this week and has not needed the feeding tube to be placed back in. She has a routine at home and is more awake during the day and sleeping at night. I love the little person she is, there have been moments where I really thought she was going to coo to me but has not yet. She is lifting her head strong during tummy time and makes her feeling well know with her cries. She typically has cranky time between 8 and 10pm and it is usually relieved by a combination of exhaustion and finally having a bowel movement.

Today we were able to visit gastroenterology and meet with the nurse practitioner, they were very happy with Arlyns progress and really felt like since she was doing so well there was no reason to return with a scheduled visit only is we need them. She was placed on Vitamin D since she is not tolerating her multivitamin (she pukes it every time) and they offered the idea of adding in a probiotic, so we will be trying that. Tomorrow we will be headed to our second follow up with cardiology and hopeful we may be able to reduce the lasix or get rid of it all together, we may be able to talk about a follow up ECHO to see if her throbus is gone so we can stop the Lovenox shots.

The count down is on, Mommy is returning to work on May 17th and really trying to get all of Arlyns ducks in a row before I return. Thank you so much for your continued love and prayers for this little girl, look at who she is the power of prayer is real <3

Arlyn and my grand baby Genovine

 Bathtime

 Breast milk supply

My little doll <3

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.

March 30th 2017, 0100

The last couple of days has been a blur. WE discharged from strong hospital on Tuesday after a whirlwind of a day, Mommy and Daddy had to do a 24 hour trial in the room, Arlyn had an ECHO checked on Tuesday to see if she still had a throbs in her Right atria (which she does). WE had to complete education, set up vendors, do a car seat check and bring all of the things we have been living at the Ronald Mcdonald house with for the last month to the car ( which daddy made about 6 trips). After that day we drove home and felt like "What Now?" It was overwhelming. When we were at the hospital we had a system, a structure to our day. WE came home and piled our patient belonging bags on the floor of the kitchen and tried to figure out how this was going to work.

This experience for me has been a learning process.  With my previous children they cry when they are hungry. Miss Arlyn does not wake up to eat. I set an alarm every three hours to feed her. She had 10 times a day where she receives medication. I am still pumping every 4 hours, time to Eat? sleep? function? kids? lets just say it has been a lot. With that in mind Arlyn is doing well. She commands our attention and she needs it. The boys are happy we are home and our family can finally be under one roof. Yesterday 29th was Kolbys birthday and even though I couldn't do much for him on his birthday I was so happy that we could be home with him. He is such an incredible young man and I am so proud of my big 15 year old.

Tomorrow is Arlyns 1st primary care visit, today we meet the visiting nurse and we continue to move forward. Highlights of today Arlyn not only tolerated all of her feeds she took a record 45 ml this evening by bottle which is the most she has done so far. Keep up the hard work sprout!!! We have confidence you can do this. Looking forward cardiology indicated that a G tube is still in the mix we have a month to gain progress, I know she can do this..

 Ride home 

I just at 45ml all in a bottle :)

March 27th, 2017 2300

Today the entire plan changed, as of this morning Arlyn had taken 45% of the feeds offered to her. Since she was doing so well the team decided to start plans for discharge projected for possibly Wednesday. Because we may discharge we are at crunch time as far as trying to get our education done for us to go home. Today I stayed up with Arlyn and feed her throughout the day she took 20 to 25 ml each feeding and the rest down the NG tube. We also are doing our 24 hour home trial where we get no help from the nurses and have to both stay on the unit for 24 hours and take care of Arlyn including asking for medication, preparing her fortified breast milk, & all care that Arlyn needs all supervised by a nurse. So we started at 6pm and will end at 6pm tomorrow. I think the hardest part was giving Arlyn her lovenox shot. Daddy is learning how to be Arlyns nurse and doing a great job tonight of checking placement on her NG tube, giving medication and he even gave her a shot tonight. Please pray and cross your fingers that we get home on Wednesday, bonus is that it is Kolbys birthday and this is part of what he wanted for his birthday.

March 26th, 2017 1700

The past two days have been busy and exciting. Yesterday on Saturday we had quite the busy schedule  with the boys and I ended up feeding Arlyn in the morning, heading out to the house at 0930 and bringing the boys back to rochester because Christian went to a play Mary Poppins and Luke hung out with daddy and I for awhile and we took him out to lunch. Luke went with Eileen and then later on we got the kids back, we went to the hospital mid day and scott was able to sleep for a few hours. I was able to spend a little time with Arlyn then we both went back out to the house and I made dinner for all of the boys and cleaned up some long overdo deep cleaning. Daddy went to work and Luke was up late into the night with night mares we were back to Rochester this morning early on 0830ish. By the time I got to the hospital it had felt like Scott and I had run a marathon but a marathon totally worth it to keep the kids in a routine. Yesterday Arlyn had a big episode of vomit during her morning feeding and they decided to hold her feeds for an hour and then restart the feeds at goal to see if it was just a fluke. Honestly she did fine the rest of the day. The nursing staff loves Arlyn and are taking really good care of her we could not be happier.

This morning Arlyn took 25 ml for me during her first feed, I went and took a nap and nursing was able to feed her 10ml her next feed and at 1600 she ate 30ml. So slowly but surely she is making progress. Arlyn is loosing a little bit of weight but burning more calories with eating so we are just going to keep an eye on it right now. I really hope that this week is the week and we continue to make small gains so we can go home and be a complete family together. I miss Arlyn when Im home and I miss the boys when I am here. Overall continued slow successes.

 snuggles

 sleeping with my eyes open

bows for the little lady