February 28th 2017 (2000) 

Ms. Arlyn has had quite the day but has made exceptional progress, we have weaned the vent today and she is off all pain medication only getting Morphine as needed. She still does not like having her diaper changes and chest PT but afterwards she calms right down and falls back asleep. AS you can see from the picture above the EEG was removed this afternoon and now she has wax and goop in her hair but loves to have her little head rubbed so mommy has been working on that today. Her blood gasses have been good but has needed a few more calcium replacements. I never thought it would be so hard to watch your baby cry while on a vent and not be able to do anything to comfort her. Mommy had a moment today and had to walk away for a few minutes because of how it breaks my heart to see you like that. Daddy stayed and supported you holding you hand and rubbing your head while they finished chest PT. 

Arlyn's PICU bed with all of her pumps, chest tube, wound vac,

ventilator and other medical equipment

Baby Arlyn is so precious she is opening her eyes and smiles occasionally if you rub her face. Mommy and Daddy are exciting to see what little Arlyn has in store for us tomorrow praying for a wonderful day!

February 28th 2017 (0830)

Arlyn did well overnight…the babies lungs show quite a bit of atelectisis (fluid) bilaterally and the left lung that yesterday looked a little collapsed looked better on chest X-ray this morning. They have decided to make a few changes this morning including continuing to wean from the vent, reduce and likely turn off the continuous fentenyl drip replacing it with PRN fentenyl bolus morphine as early as this afternoon. They will also continue to wean the cardiac medication as tolerated currently she is on milrione and dopamine. Arlyn hates Chest PT and baths but gets through them and then settles down quickly. Arlyn came off the calcium drip when she started TPN (artificial nutrition) and calcium was added to her fluid. This morning her calcium was still low and she required a dose. Her wound vac is not putting out anything which is wonderful.

Arlyns lab work this morning all pointed in a positive direction. Her metabolic panel showed that her glucoses continue to be stable, her kidney function ( affected by diuretics: lasix) is better. Her WBC count continues to stay down (8.4). They increased her lipids yesterday and her trigliserides bumped up but they appeared better today. Her T-max 36.6 so this is also good.

This morning the focus seems to be on her lungs, she is being aggressively turned, bag lavage suctions, Chect PT and suction. Her lungs sound corse throughout, she received albuterol once last night or wheezes.

Mommy and Daddy are missing the snuggles with Arlyn. hopefully after a few days she can be extubated and we will be able to hold her. All we need is more time and continued love and prayers.

February 27th 2017 (20:00)

Today was a good day! Arlyn had her chest closed this morning and a wound vac applied, while removing her bandage she endured a few skin tears but the nurse has dressed them to keep them nice and dry and intact. Her vital signs were wonderful throughout the day today and after the procedure then removed the paralytic and were able to also removed her NG tube because their was not drainage from it. They stopped her EPI drip and she tolerated it wonderfully. She continues to have x3 lines in place, they removed a peripheral IV today. Arlyn received another dose of lasix this evening and has handled it like a champ, lots of wet diapers. She also after the paralytic took a bit to adjust her breathing with the vent and needed bicarb a few times. This evening she was quite lethargic because of the fentenyl and phenobarbitol that was redosed in relation to get her to her therapeutic level. She has started Chest PT that looks kinds scary but when they cleaned out her chest cavity before closing they realized that her left lung was a bit collapsed and needed to be manipulated with chest PT and bag lavage suctioning. She is doing wonderful with this and will open her eyes when they preform it. She is quite the little doll and we could not have asked for a better baby to be running this marathon, she is keeping up and doing a wonderful job! We are totally in love!

February 27th 2017, 0900

Happy First Week of Life Arlyn! This morning they have decided her chest could be closed and we were able to go down and listen to rounds and give her lots of love and kisses before they started the sterile OR procedure at the bedside. The big plan for today is to close her chest and see how she does. Much of the intervention that they had done yesterday has paid off today. Arlyns lab work overall looked stable her Albumin was better but the feel that loss is from her chest tube. Her calcium is hold for now they started her on a calcium drip yesterday and increased the rate overnight but previously in the time frame she was on the calcium drip she would have received several does of calcium but only needed one overnight by the time we came to visit this morning. Her kidney levels (creatine) bumped a little bit but her BUN went from 19 to 17. You could physically see that her puffiness is better in her face and arms but still has quite a bit of swelling in the base of her head and truck. She is having plenty of wet diapers so overnight was great.

We should meet with neurology this morning and meet Dr. Robert Tompkins-Stone who actually was my multiple sclerosis doctor for years and left the M.S. center and transferred to pediatric neurology so I trust him sincerely knowing the doctor that he is. Currently they are following her phenobarbitol level to adequately treat her seizures.

So for the procedure she was placed back on the paralytic and pain medication to adequately sedate her for the procedure. They were not certain if they would close her completely or use a wound vac to help with closure. Either way her chest should be closed in a little bit.

February 26th, 2017 (1748)

It has been a challenging day for Arlyn and although many things have gone well she struggled a bit more than previously. This afternoon after review of her EEG (which monitors for seizures) they found she was having some and treated her with Phenobarbital. She was consulted by neurology and they will decide tomorrow with the attending what seizure medication to treat her with regularly but for now the phenobarbital should help. Arlyn will continue to wear the wires to measure her brain waves to see if she has any further seizure activity. The medication did sedate her quite a bit and after her pressure has been dipping down throughout the morning they intermittently have paused the fentenyl. She received her blood this morning and Lasix (which helps get the water off) and has had a great result with diapers that were weighing 12-20 her initial diaper post lasix was 96. She is also putting out more from her chest tube. This evening her lab work showed a very low calcium level and Dr. Baker needed to push calcium at the bedside. The medical team also checked an albumin level and it was low so she will received albumin which should also help her blood pressure but may again make her calcium low. TPN should start at 1800 and lipids with it so her nutrition should improve and they are checking now to see if they can increase the calcium in her TPN.

I love this little girl so much and it has been an extremely emotional day today. Grandma and Grandpa Burley came to visit Arlyn and My Aunt Susan stopped by. Mommy and Daddy are enjoying every single second that we have and have barely left the bedside today. Keep the prayer chain going, so thankful for each and every one of you.

"Lord I come to you today to present Arlyn to you. This very life threatening illness that is upon her is very sad to all who know and love her.  I know that in times like this her Mommy and Daddy are in despair. Please keep us strong in You so that we can be a comfort to this dear little child. Please keep Arlyn from being scared of what is happening all around her. I ask Your mercy so that pain would be minimal or nonexistence. I love this small and fragile little child. Bestow Your grace and peace to us and all who love her. I pray this in Jesus name, Amen.”

February 26th, 2017 1000

Arlyn did well overnight and received more calcium repletion, her foley was taken out and she maintained of the paralytics. This morning she is at a peak for edema (swelling) which is expected. Arlyns hemoglobin dropped a little bit overnight so the medical team feels she would benefit from another blood transfusion. Neonates blood volume is only about 200 ml so it doesn't take much in reguards to lab draws and output from her chest tube, along with dilution from fluid maintance to justify why she had a drop. They will also give her diuretics as expected today to help get some of the fluid off. Throughout the day she may get re-dosed depending on how she responds and her lab work later on. The medical team turned down the fentenyl to promote her movement. She opens her eyes frequently and definitely knows mommy and daddy's voice. I know she just wants to be picked up but for now we are trying to give her as much contact as allowed. (face and head rubbing, kisses and gentle touch to her legs and arms)

If she gets the fluid off then tomorrow we hope her chest closure will happen although it is not uncommon to need a few days. Fingers crossed, prayers and love we will keep the positive steps forward and slowly make progress.

February 25th 2017, 1945

We are past 24 hours post surgery and we could not have asked Arlyn to do a better job! She is an amazing little bean sprout an above all continues to improve. This evening Arlyn's paralytic was turned off and she was able to open her eyes and look at mommy and daddy. Daddy continues to shower Arlyn in kisses and amazing that Arlyn gets excited when mommy or daddy talk to her. She loves to have her hands by her face and right now they have her arms to her side but we watch and every time she moves she tries to bring her little arms back to her face. One baby step forward today and excited about tomorrows prospective.

This evening Arlyns lactate was on the rise a little bit to 2.5 from 1.8, thinking it was from the extra movement and treated with bicarb. This evening they also were thinking about removing her foley catheter now that she no longer requires the paralytic. The perfusion to her feet is much better and her temperature is more even than before so pulses are easily found on her feet. The vent continues to wean and her Fi02 is down to 35% from 50%. As a bonus they also removed her umbilical arterial line today.  Mommy and daddy has been at the bedside for most of the day today and will plan to update the blog after rounds tomorrow morning. Thank you everyone for your prayers we love you all.

February 25, 2016 0900

Arlyn had a great night overnight and maintained her strong little self doing what they wanted, scott and I came to rounding this morning to find out the plan. Dr. Powers and the medical team were very pleased with Arlyns progress overnight. They decided to back off on ABGs to every two hours, her lactate has stayed consistently down currently 1.8. Her calcium drops almost every lab draw and she has been repeated about 10x since surgery (which is not an abnormal event for a cardiac surgery) but that being said they are adding calcium to her maintenance fluid. Her ventilator was continued to wean this morning with a lower respiratory rate. The line in her neck was a little bit deep so the cardiac surgeon, Dr. Gensini is pulling the line back at the moment. Her pulses in her feet have been difficult to find although her blood pressure and other signs of perfusion look good so they will reduce the EPI she is receiving and later today if all goes well the team had decided to back off on the paralytic and just use sedation. Arlyn is an amazing little fighter and mommy and daddy have been supportively sitting with her throughout the day and night. This morning she will received the rest of her cell saver (which is the left over blood from surgery) her hemoglobin was down to 11.2 from 12.4 and this will give her a little boost. If she tolerates this well the doctors who rounded this morning will decide this evening if she will receive diuretics and try to get fluid off. She will get the blood over 3 hours and we will watch. Otherwise we will start to get the fluid off, TPN and lipid tomorrow.

February 24th 2017 (21:27)

As we had posted earlier that that baby came back from surgery around 1200 and she was doing well and she was doing exactly what they wanted her to do. She is maintained on x3 medication for her heart to maintain rate and contraction. Arlyn's blood pressure is stable and her heart rate is also stable she did require a fluid bolus at 1900 but has not received any other assistance for blood pressure since. She is paralyzed so they can control her breathing and essentially do what they want even so she was able to wean from the vent a little bit today and got down to 50% Fi02. (This is great for her first day) She had a blood sample drawn every hour to check how she is doing and so far other than needing calcium repleated (which is quite normal) she has been critically stable.

She is one of the sickest babes at Galasano Children's hospital right now but in light of that she is doing wonderfully. The next 24 hours is critical and every 24 hour that passes will make Arlyns picture a little  more clear. The plan is that on Monday her open chest will be closed as the swelling allows. Please keep the prayers for Arlyn coming…I will be minimize the photo exposure of Arlyn at this point but I feel it is important for family and friends to see her. Please know that the photos are graphic and as the medical equipment gets peeled back and our baby is put back together to support herself more pictures will be available. If you have any questions please post at the bottom of the blog and I will try and answer them so everyone can have an answer, knowing that if someone does have a question there is likely other who have the same. We love you all and look forward to more positive days ahead.

She is out of surgery

We are about to go back and see Arlyn she just returned from OR and we were able to get a brief look and kiss her. She did wonderful and the surgeon Dr. Alfaris was very happy with the decision to pursue  the type of surgery that we did. Full reconstruction of her aortic arch is finished and the vein that emptied into the right ventricle was actually two conjoined smaller veins and less concerning than anticipated. She was taken off bypass at about 1200 and tolerated it better than anticipated as well. Due to the extensiveness of the surgery her chest was left open and will be closed in a few days. She is vented and has multiple lines as originally planned on. Overall the structural function of her heart in question so far looks good they did a TEE after surgery and her cardiologist came to tell us that although the reconstructed portion of her heart is a bit small it is functional and the other structures of her heart so far seem to be working in sync with the aorta. We are grateful and humbled by the power of prayer and love that our entire family and friends have provided us with. After seeing Arlyn this afternoon I will give another update and pictures. I love you all and excited about this little fighter and how she again surprised us all.

February 24th, before surgery

Update from last night Arlyn received her first bath with a pink foam clohexadine wash pre op. She actually was washed twice to kill the bacteria on her body but we were able to wash her the first time. She was quite awake last night and opened her eyes quite a bit. Throughout the night we continued to dry nurse her (pump completely empty and let her latch on) she enjoyed it but it was very apparent that she was hungry and frustrated that they won't let her eat.

Today is the day we woke up at 0500 and got ready to single with Arlyn before she headed off to surgery. She was switched off TPN and Lipids and replaced with D10,  prostaglandins was the only other thing running before her transfer to OR. We walked her to the pre op area and meet the infamous surgeon Dr. Alfaris he is the main surgeon that will be in charge of Arlyns case. He discussed with us the potential for her to do well but the long and winding journey she will be on to get there. The hope is that today we will correct her Aortic arch and resection to make it large so her outflow is better and will no longer need the extra holes in her heart open. He will also examine the vein on the right side of her heart and decide what to do with it when he is in there. He will force the smaller left ventricle and smaller mitral valve to work harder over the next few weeks in hope that they will grow and compensate for the increased blood flow. He was very honest with us about the potential for this to not go as easily and that the board of doctors that meet on thursday were marginally split on the decision to go this route although this decision does have the potential to give her the best outcome in the long run and live a normal life. We should have another update around 11am so please pray and come back to the blog for updates. Pictures below are of our family time this morning.

February 23, 2017 1850

Today was a long and overwhelming day, there is a plan for Arlyn to have surgery to correct her aortic arch tomorrow. A group of Buffalo, Syracuse and Rochester cardiologists, x2 well known surgeons with extensive experience +30 years and the ICU intensivists all had a conference this morning and decided it would be best to have the surgery tomorrow since she is in the optimal health to move forward. She has a vein that empties into the right side of her heart that is supposed to empty into the left side and they will also be looking at. This surgery comes with quite the risk to the baby and we anticipate she will come back with 2 central lines, a new arterial line, chest tube, intubated and will likely be sedated for several days post op. They may or may not keep her chest open, this being said we really appreciate any prayers and well wishes in this very difficult time for our family.

This evening Carriann was discharged from the hospital and we moved to Ronald McDonald house in the hospital while the baby moved from NICU to cardiac PICU. She will return from surgery tomorrow and recover in PICU. The nice part about this is that the PICU is directly below Ronald McDonald house so we can be close to Arlyn.

On a brighter note Arlyn was able to latch on and suckle for a little bit, she was comfortable and fell asleep. It was nice to just enjoy snuggling with her and today that is mainly what Scott and I did enjoyed and loved on Arlyn. She was opening her eyes a little more than the day before and we enjoyed and were humbled by every second we spent with her.

February 22, 2017 2100

Today has been a good day! Arlyn after the doctors rounded this morning it was decided we could start bottle feeding with breast milk. Mommy has quite the supply in the freezer for Arlyn at this point so she can be breast feed dependent. Mommy and Daddy both got to feed Arlyn and after two swallows the tablespoon of breast milk she is allowed every 4 hours is gone and she wants more. She continues to love her pacifier and sugar water at this point. Tomorrow after pumping Arlyn will attempt to breast feed for the first time. I will pump myself dry prior but it is very important for her to learn how to do this before surgery to give her memory for after surgery. Other changes this afternoon include making her lactate Q12 instead of every 8 hours. This little princess opened her eyes this evening quite a bit when daddy was holding her so cute watching who she is. Tomorrow is the big meeting where plans will be solidified for Arlyn and her surgery so please keep us in your prayers, updates to come when we know!

February 22, 2017 1200

Arlyn had a great night she received the central line in her groin and everything was successful last evening. It took a little bit of time for Arlyn to wake up but she was able to tolerate the procedure without need for extended oxygen use. The baby finally started on TPN ( nutrition ) and did not have a lapse in her prostaglandins which essentially was the goal. Yesterday evening the baby started to look a little jaundice and they talked about possible photo therapy today they will be repeating bilirubin this afternoon to see if she will need it. Arlyn is a well natured baby and is contented by touch, unfortunately we have not been able to hold her very much because she continues to need an arterial line in her umbilical artery they do not want to get dislodged. We were hoping for skin to skin last evening but will hope they will allow for us to hold her today. We will be asking today if we can start breast feeding Arlyn loves her pacifier and is ready to nurse.

Mom and Dad are doing well and have the potential to discharge tomorrow morning. We will hopefully be transitioning to the Ronald McDonald house after discharge to be close to Arlyn. All of the social workers and support staff through compassion net have been very helpful through this entire situation. The NICU team has been wonderful and thoughtful in the entire course for Arlyn.

February 21st 1600,

Today has been a busy day for Ms. Arlyn, this morning they confirmed that the placement of her umbilical line was a little low and decided to place a PICC line or a line that would go in her arm or groin that would give them central access which will be better for her heart and prostaglandin medication. They attempted twice at the bedside without success and even though she received fentenyl and versed to help her relax the little fighter that she is really wasn't having it. By this afternoon I have talked to cardiology and the plan thus far because she is doing so well is to likely to wait until her due date ( March 8th) and allow her to grow prior to surgery. Of course if she takes a turn for the worse or is in need of intervention more quickly the plan will change. Discussions with the surgeon, cardiology and the entire NICU team will take place on thursday at conference so we may see a change in plan at that time. I appreciate all of the family and friend support, love and compassion that everyone has shown our family and prayed for our family. It is 4pm and she is headed to IR for her pick line please keep her in your thoughts and prayers and new posts will happen frequently.

Mommy and Daddy are doing fine at the hospital and realizing how difficult it is to have a baby and have to make an appointment to go see her. Mommy has started to produce colostrum and the baby is able to be swabbed with the breast milk in hopes that after the procedure today she will be able to have her first skin to skin contact.

As many of you know this has been a long road in pregnancy and just to give a little background about the baby we had found out at 20 weeks that she has a congenital heart defect and after weeks of neonatal cardiology visits and hoping that I don't go early yesterday during a ultrasound a hole was found in my uterous and I needed an emergency c-section. Arlyn Taydem Mackin arrived by c-section at 14:59 on February 20, 2017 absolutely perfect in all the ways she could. She was wisked away to NICU as planned and two IVs were placed. She was given Calcium gluconate (not abnormal for cardiac patients) After about 2 hours in recovery Scott and I were able to go over and see her, she was doing great! At which point last night she continued on room air and continued with stable vital signs. A central umbilical line was placed last night and she was started on additional fluid and prostaglandins to keep her heart holes open. WE visited her agin at about 00:30 and she was tired but continues to do well. 

Mom is doing fine and excited to see Arlyn through out the day today. In Lieu on flu season the people that are able to visit is restricted to grandparents and mom and dad only. If you would like to come see Carriann there is a visiting restriction of up to 3 people at a time and all others would have to wait in designated waiting areas. Please come back to blog for updates, I will try and update every couple of days and with events or news about Arlyn.