It has certainly been a long year and exciting that Arlyn has continue to suprise and amaze us. She is almost a year old and I just wanted to reflect on the last year in how wonderful a joy she is being a part of Scott and my life. Arlyn was able to go on her first vacation to Texas and had joined Daystar a respit program for medically fragile children. She is meeting her goals and expectations for her age. Arlyn is slow to eat and still is heavy to rely on baby bottles and baby food 3x a day. Arlyn is so excited about Elmo and also loves my little pony (mostly her hair). She is walking along things and is trying hard to keep up with the older boys at home. At 9 months old she was able to dip her feet in the gulf of mexico and the little boys this was a new experience as well. At 11 months old arlyn started to say "dada" with meaning always looking around for her playful daddy, loves to face time him on his lunch breaks and loves daddy so very much.

Cardiology has not cleared Arlyn yet but does feel like she is doing wonderful, we are still on tract with 4 month follow ups for awhile really just watching her hypoplastic mitral valve and assuring that she is growing apropriately. We ran over a little bump when we found that Arlyn was quite anemic at 10.5 months old with Hct 29 and Hgb 7.8 so we started iron supliments. We are hopeful that by the end of march this will be resolved. She is barely on medication now and just mostly for her gut but honestly she is also less pukey than she has been previously. I am so excited and trilled to see what this little girl will do in her life already overcoming so much.

Happy Birthday Arlyn Taydem Mackin!!!

 7 months old

 Not so sure about the ocean

 Family Vacation

 Relaxin in the sand

 10 months old

 11 months

 My Birthday #1

 Enough with the pictures mom!!!

Favorite Elmo!!

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