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

March 24th 2017, 2200

Arlyn has made more progress today! Nothing has changed this morning in rounds, just the push to feed and keep doing what we are doing. Today Arlyn ate every three hours and continued to get large volume than the day before. The first feed this morning she ate 20 ml, 10, 15…then 25 ml. She is sleeping in her new more appropriately sized crib and usually sleeps pretty well at night. Mommy ran into a problem this morning when her tooth broke. I ended up driving to our dentist and having to have a route canal done but will wait until April 18th to have the crown put on. Kolby is with grandma for his birthday weekend and Calogero, Christian and Luke ate pizza and salad and spent the night with daddy. I was able to see them for a little bit before dropping them off and coming back to the hospital and enjoying Arlyn for a few before I go to bed.  Continued love and prayers appreciated, the power of the love every single one of you has shown is amazing for our little girl.

 little crib for our baby

March 23rd 2017, 2300

Arlyn had a good day today, we came back late this morning/early afternoon after Kolbys CSE meeting in Mt Morris and was able to feed Arlyn by bottle and she took 16 ml the most she has taken so far. She continued to average more today. Today she did not have a poop for the entire day and made up for it this evening blowing out the entire diaper, her onsie and the sleep sack she was wearing. Today we also reduced the amount of Breast milk Arlyn gets from 60 ml to 55 ml to slow her weight gain but hopefully not allow her to drop. Today she also got her big girl crib and graduated from her warmer isolate. By the end of the day they were able to get a more appropriate size crib not the one she is pictured in below. Overall the small gains we see every day is certainly making a difference and getting us closer to home. Such a strong and loving little girl!

March 22nd 2017, 1700

Arlyn needed to have her feeding tube replaced last night because it started leaking, she was a little champ and after being calmed down slept the rest of the night. This morning during rounds they discussed feeding and actually reducing her volume of feeding if she doesn't stop gaining so well. They look to have a baby gain 20-50grams daily and Arlyn is gaining about 100grams a day (over achiever) SO if it continues tomorrow then they may reduce her feeding volume to 50 ml instead of 60 ml. WE have started anticipated teaching with the NG tube and Lovenox shots. We also plan to bring the car seat back with us tomorrow to do an oxygen saturation test where she is attached to the monitor for an hour and a half to make sure there are no episodes while trying to get home. Arlyns lab work revealed this morning that her potassium was 2.9 so she was added back on a supplement. The drop in her potassium is likely from the Lasix (It is common to loose potassium with Lasix) They also checked her level to assure her lovenox is therapeutic and it was so we are good with the dosing she is on to go home.

Speech came back by today and Arlyn we find when feeding gets upset when we take the bottle out of her mouth so we tried to have her feed continuously and she stopped and took breaks to breath so she has graduated to being able to feed without mommy taking the bottle out of her mouth every 3 sips. She has been extremely sleepy today but I was reassured this is common because she has been running a marathon with feeding and sometime Cardiac babies have a catch up day. I am hopeful that this afternoon she will be more alert for feedings before I head home with the boys tonight.

My very good friend Lejla has made me aware of some of my faults, which I am truly grateful for and this week I am going to try and focus some time for myself because I find that I self sacrifice until there is nothing left and I am truly feeling it, all for a good reason but I believe she is right when she said today I will be no good to anyone if I continue to burn it from both ends and end up sick. My mom always told me to treat myself like my own child and I will use that tactic to give back to myself. Another good day, excited about tomorrow!

 Arlyn free from tubes for 20 seconds

 Hard to wake up for my feeding

 Mama snuggles

Daddy snuggles after work

March 21st 2017, 2000

Arlyn had an eventful day, she had her first bottle with a slow flow nipple. She had 10 ml on her first try and did really well. Her second feeding she worked with speech and did really well eating had a strong suck and swallow and from her evaluation she did not find anything concerning at this time for a formal FEES. If she started coughing or having difficulty advancing then we would do a study later on. She ate 12 ml this evening and was quite exhausted after 15 mins. Slowly but surely she will get this and I have confidence in her, practice makes perfect.

I went out to see Kolby and Calogero and had plans to take them to Geneseo to hang out and both of them really just wanted to relax at home so we watched Pete's Dragon and they showed me where they were in their video games. It was nice to see them and Mommy will be spending the night at the house tomorrow night in order to make a meeting for kolby at 0815 for CSE. I will try not to disrupt Arlyns day and stay at bedside and head out when Scott heads to work.

Continued prayers and love for Arlyns strength and dedication to feeding and Mommys patients with the special way I need to feed her. (Tipped on left side, 90 degree angle, three sips pull the bottle out to remind her to swallow and breath, repeat)

 Burps

 Fancy feet

 I can hold my own hands

Daddy and Arlyn

March 20th, 2017 2300

Well, congrats Arlyn on one month old! I am so happy and blessed to have you in my life and realize you are slowly teaching me patients. This morning before rounds Arlyn (after tolerating her feedings all weekend) vomits like a volcano all over Mommy. The feeds are stopped and we pause, Her heart rate maintained 180ish for the next hour and almost gave me a heart attach thinking like a nurse…is she breathing to fast? is that artifact on the monitor or is her oxygen really 90? But after a moment and realizing I need to relax, WHY? Because babies throw up. We went on with her day and she tolerated every single feed after that. I hope that she will have a swallow evaluation tomorrow after rounds and hopefully with any luck we will be able to feed her with a bottle soon. I realize that I may never breast feed Arlyn and although it is difficult to think about it is a small sacrifice for her to do the best that she can. Reason being she may go home on fortified breast milk which will require mixing and measurement. Another great day and the prayers from all over the country are continuing to support our baby and our family, very much appreciated.

March 19th 2017, 1900

Today was a lazy sunday, Mommy and Arlyn hung out while daddy slept for a while before work. Arlyn gained again today from 3000g to 3130g. It is quite a big gain but she did look fuller to me this morning like she Cubbed up a little in the face, very happy to see this. She is at goal bolus feeding 60ml/hour every three hours and tolerating well. Daddy and I have found that it is better for her if we burp her because she tends to spit up more if she isn't burped. She got her bath this morning and her incision is healing nicely. I thought it was adorable this morning that the cardiologist had described Arlyns heart murmur as musical. I have not listened to her heart but it makes me want to. Our hopes are that on monday the team will be excited about starting oral feedings by bottle and Arlyn will continue to do well with it. I am so proud of this little miss and see going home in the near future!

 Cuddles with mommy

 Sleeping with my arm out

the Laundry bag that my nurse gave me…

March 18th 2017, 1530

What a day, Arlyn had her first overnight at the hospital without mommy and daddy and she has done fantastic. She has tolerated her feeds all night and today. She is at 50 ml bolus Q3 hours and by tomorrow 11am she will be at goal 60 ml. Today was the big day and all they boys were pleasantly surprised to be up here at the hospital enjoying their sister. It was wonderful to watch the boys look at her in awe.  Kolby had quite the interest in Arlyn and held her for quite while. Eileen stopped by and picked up the boys and we took the bigger boys to lunch. Scott went up to spend time with Arlyn while I drove Kolby and Calogero home, all this for 20 min with the baby but was a priceless memory to have them all together at the same time to meet their sister. I cannot wait to go home with all our children and enjoy life with all of them.

March 17th, 2017  (1000)

Happy St. Patricks Day! We chose Arlyn as a name because it is celtic meaning 'pledge, promise and oath' which is exactly what we will do for you baby Arlyn. Mommy and Daddy have taken with our entire heart to always protect and cherish you, you are truly teaching us and gifting us with how strong you are and how amazing your life will be in every moment. We are honored to be your parents.

Today they talked about the Echo in rounds and besides mild left ventricle pressure everything seems to be progressing as expected. Her left atrial pressure is almost within normal limits ( which is to be expected for her heart surgery) Her lab work looked better today and they took away her potassium supplement. Her Chloride continues to normalize. Arlyn has done well with the increased volume on her continuous feeds so today they are going to try and bolus feed her continuing to try and stretch her stomach out. Her sutures were removed this morning and her surgical incision site looks great and her Chest tube site also looks great, still with bacitracin applied to that site. She is now enjoying her bath more than before and is quite awake this morning.

This afternoon we will be heading to pick up Christian and Luke and head out to see Kolby and Calogero. The boys have both expressed how much they miss each other and none of them really know we are going home to spend the night with all 4 of them. In the morning we plan to make breakfast and head up to the hospital so all the boys can meet Arlyn for the first time. We couldn't be happier to share this little girl with the brothers who will protect her for the many years to come. So excited and will share pictures hopefully tomorrow. Lets hope and pray that arlyn manages her feedings and gets bigger and stronger.

March 16th, 2017 2100

Arlyn continues to grow and get stronger. Yesterday her weight was 2810grams and today she was 2840 grams. According to the Nurse practitioner we are really looking for relative gain over the course of the next few days. In rounds this morning they talked about her electrolytes specifically her chloride, sodium and potassium and will be closely monitoring but feel confident that her electrolytes will normalize as the diuretics disappear. They switched the Lasix over to oral lasix which means she is no longer on any other medication IV. Hopeful that the lab work will get less and we will be able to take her PICC out soon. Overall today was exciting because I was allowed to take her in a stroller on the unit for a little while (20 min) honestly she never woke up and I walked with a smile plastered on my face but it felt good to be able to walk around with her. She also had an ECHO today to check the left ventricle pressure since removing her diuretics yesterday. I was gone this afternoon visiting the big boys  so I did not get an update on what was found but will be sure to touch base with cardiology in the morning at rounds. I had a wonderful afternoon and evening with kolby and Calogero talking to them about what is happening with their sister. Kolby has a pretty big expectation that Arlyn should come home for his birthday on the 29th. I really hope that happens. Another day down with continued progress not so bad. Back at the hospital this evening Arlyn vomited a little bit but after burping her she seemed more content. Hopeful that we have another gain tomorrow.

 After bath time this morning 

 During Arlyns ECHO today 

 Going for a walk 

 Dreaming while I get my ECHO 

So sleepy

 Calogero and I this Afternoon putting together his car