Your time in the NICU

Thursday Nov 28^th

- Born at 7:08am

- HR 60, blue gray all over, pupils not reaction to light, not responsive, not breathing

- Transferred to St Mary’s Hospital within hours

- Started the cooling process, hypothermia procedure for asphyxiation

- We were transferred just a few hours after that to St Mary’s

- I did not truly understand the severity of the situation, I was in denial

- I thought cool her down, warm her up she will be home not too long after that

- I thought everything is fine

Friday Nov 29^th

- Lots of doctors visiting us, talking to us about what happened

- Cut off of oxygen during labor/delivery and that Maura’s brain most likely has received   damage

- On a ventilator to breath

- Talking about showing signs of seizures, on seizure medication, very sedated

- You looked so helpless and weak

- You were so cold on your cooling blanket

Saturday Nov 30^th

- We were so excited because you were breathing over your ventilator; they took you off  the vent and put you on CPAP. We were so excited.

- You were still on a cooling blanket and highly drugged with seizure medication

- Were not very responsive to us when we would visit you.

- I was in a lot of pain recovery from surgery, having bladder problems, couldn’t hold my   urine, bad gas pains in abdomen, incision pain. I could barely walk. 

- My colostrum came in. I had been pumping every 3 hours… I felt such a small victory         here and I held onto it

Sunday Dec 1^st

- At 12pm they started to warm your little body up, bringing your body temp back to    normal

- You handled the warming process well but your breathing became very labored so you  had to be intubated again. I cried.

- You had an EEG, were put in a ‘brains’ machine to monitor brain activity and watch for  seizures

- You still had a lot of phenobarbital in you and you were sedated.

- We were discharged from the hospital; I came home and cried and cried.

- Friends put up our Christmas tree for us to have something nice to come home to.

- Nurses set up a camera overtop your bed so that we would watch you on our computer  from home to feel closer to you.

Monday Dec 2^nd

- James is still off work for Christmas

- An EEG was run to monitor for seizure activity

- We both visited you in the NICU and just tried to enjoy the time together.

Tuesday Dec 3^rd

- Found out that previous EEGs showed periods of no brain activity or ‘pauses’ in brain  activity, that was terrifying.

- MRI showed ischemic brain damage, proving that your brain was injured during the lack  of oxygen.

- Areas affected: posterior thalami, hippocampus and basal ganglia.

- I broke down in the NICU, I felt so defeated. Thoughts of you never coming home  flooded me.

Wednesday Dec 4^th

- Mom stayed the night to help with Ethan. I am physically and emotionally exhausted. I’m  in a lot of pain with the damage to my bladder.

- Your central line to monitor for blood gases came out, now that you are off the vent and  doing well you only need gases to be done as needed and not throughout the day.

- Edema (swelling) is WAY down; you are able to open your eyes now because you aren’t  so swollen.  

Thursday Dec 5^th

- Mom stayed the night again to help with Ethan.

- I got to hold you for the first time! I was so over joyed. We sat together just cuddling.

- James went to visit before work that morning.

Friday Dec 6^th

-  Results from most recent EEG showed sings of continuous brain activity. HUGE relief!

-  I got to hold you again and James got to hold you for the first time! He was one very  happy daddy :)

- CPAP has been reduced from a rate of 20cm to a rate of 10cm!

- James got to meet your neurologist face to face for the first time, Dr. Taylor. We are so  happy to have him as your neurologist. He is very smart.

Saturday Dec 7^th

- I went to patient first, I have developed a kidney infection from the damage to my  bladder :( I stayed in bed most the weekend. In a lot of pain.

- CPAP was reduced from a rate to 10cm to NO rate and just a basic pressure of 8cm!

- I couldn’t visit but James went to spend time with you. He loves being with you.  

Sunday Dec 8^th  

- Emotionally rough day for me.

- This was not the way I planned December going. I went from mom of 1 expecting  number 2, decorating, nesting and getting so excited… to feeling like a mom of none. ---- Baby in the NICU, physically/emotionally can’t take care of my other.

- I feel like a bad mom. 

- Still couldn’t visit because of my kidney, I miss you so much.

Monday Dec 9^th  

- Finally get to see my baby again!

- Last central line came out that gave you fluids, lipids and electrolytes.

- You are now doing feedings through your nasal feeding tube only.

- You have developed a slight gag reflex! We are praying hard that continues to get  stronger so we can work on eating.

- OFF CPAP! Now on a high flow cannula on 4cm

- First day back at being full time mom again to Ethan. Home with him with no                 help. We watched a lot of movies and were very lazy.  

- You had another MRI done to compare to the last MRI.

- We brought in clothes, socks, hats and a blanket from home to help you feel more           comfortable.

- I dressed you in a sweet little onesie and put a headband on you.  Just because you’re    in the NICU doesn’t mean you can’t look good :) 

Tuesday Dec 10^th  

- Went out to lunch with friends to got out of the house. It was a nice change of pace.

- We went to visit after work, no big changes… digesting feeding better, no feed left over  in stomach after the 3hrs.

- Pheno levels are becoming lower so you are a lot more alert, moving your arms and legs,  looking around. It is so nice to see you become more responsive.  

- Still waiting on MRI results…

- Feeling mixed emotions… so happy you are doing well but wishing we would hear of  more improvements. We want you home.

- Feeding are our biggest hurtle right now. The cannula is really there to help encourage  you to swallow and clear your airway. The more you develop a gag reflex and swallow  more effectively, the closer we will get to doing bottle feedings. Feedings are really the  only thing that is holding you back from coming home.

- Holding you and snuggling and then putting you back in your crib and leaving is getting  harder and harder, not easier.

Wednesday Dec 11^th

- Finally off high flow cannula. No more breathing assistance, breathing on your own.

- MRI showed 2 of the 3 areas of her brain had ‘resolved’ or healed.

- However, this was a difficult visit to hospital, emotionally having a hard time seeing you have to go through so much.

Thursday Dec 12^th

- I couldn’t make it to the hospital.

- Feeling defeated.

- Having difficulty rejoicing in the victories of yesterday, feeling like my spirit is being  attacked/crushed.

- Wanting this to be over and for my baby to come home, I’m done.

- Dreams of you being home by Christmas are starting to seem highly unlikely.

- Feedings are the only thing keeping you at the hospital.

Friday Dec 13^th

- We have been told that you are going to be given the next 2 weeks to either bottle or  breast-feed. If you can then you can come home! If you cannot within the next two  weeks then we will move forward with a G tube placement for feedings and you will  come home to continue to work on sucking and swallowing to learn to bottle feed at  home.

- I am now a lot more involved in you care and needing to be at the hospital for longer  stays and even twice a day to help with the breast-feeding and paci training right now.

- Today we tried to breast feed twice for the first time.

- We also did skin to skin for the first time today.

- You do not like breast-feeding so far, you get very upset.

- You did however; make great improvements on sucking your paci and swallowing more. 

- Hopefully with more practice and consistency you will get stronger and stronger there. 

Saturday Dec 14^th

- Went to see Santa with Ethan and then went to the hospital to see Maura.

- We were told that you gag reflex is getting stronger

- We gave you a bath, your first bath from us :)

- You are getting better at sucking your pacifier

- Grampy was able to come back and see you, he has not seen you in a while, not since  when you were more critical

- Still working on moving you hopefully into progressive care and out of intensive care  since you are no longer critical.

Sunday Dec 15th

- We went during Ethan’s nap time, a friend stayed home with Ethan.

- I was emotional because I’m just ready to be your mommy full time.

- I was scared what challenges you are going to face, I never want you to hurt or struggle.

- Scared of the unknowns of what our life is going to be like.

Monday Dec 16th

- James took the day off work

- Our friends son who is in the NICU also, Elijah, passed away. He was a preemie.

- We held you tighter and closer, thanking God for your life.

- We want you home!

Tuesday Dec 17th

- Met with PT, to learn how to do things myself to help you work on muscle strength as  you grow.

- Talked about insurance stuff with the discharge nurse. Lots of information, a little  overwhelming.

- We snuggled lots.

- Your cry is getting so strong haha you are so opinionated :)

Wednesday Dec 18th

- First day trying to bottle feed

- You barely take anything, its very difficult for you, but we will keep trying.

- Daddy went up there without me, I wasn’t feeling well.

- He was so excited he got to give you your first bottle.

Thursday Dec 19th

- Mom and I went up to visit.

- We gave you a bath, fed you a bottle, you only took 3cc.

- We will keep trying.

Friday Dec 20th

- Ethan went to Grammy’s, so we went up to spend the evening with you.

- Rough night for you, you were very gassy and upset.

- We held you and did our best to soothe you.

- I hate leaving you.

Saturday Dec 21st

- The funeral for Elijah. James sang for them during the service. Horribly emotional for  both of us.

- Finally talk of discharge plans: g tube, 2^nd MRI

- Short visit, I hate how busy our lives have become.

- Lots of snuggles and kisses

Tuesday Dec 24rd

- Jan 3^rd surgery date is set for your G tube.

Wednesday Dec 25th

- Christmas day, we got to take you into room on the floor so we could all be together  and not have to shuffle back and forth 2 at a time.

- You met your brother for the first time :)

- This was the best gift we could get (other than you coming home)

- So bittersweet.

Thursday Dec 26th

- We just snuggled and enjoyed time together. :)

Friday Dec 27th

- James and I aren’t feeling good, don’t want to get you sick.

- We did phone checks instead of visits.

Saturday Dec 28^th

- You took 20ccs last night!

- So hopeful for more improvements with your feedings.    

Tuesday Dec 31st

- I met with OT to learn home care.

- I met with patient advocacy to apply for Medicaid and SSI.

- I’m learning there is a lot to being a special needs mom. Taking notes as much as I can  to learn.

Wednesday Jan 1st

- Talked to surgeon on the phone for your G tube. Really nice guy.

- Still moving forward with a Jan 3^rd surgery date.

- It’s New Years? When did the holidays come and go?

Friday Jan 3rd

- Surgery is finally here.

- Longest morning ever, waiting around during a 3hr surgery.

- I ran off and hide by myself to cry.

- I hated seeing you in pain.

- Your cry was so hoarse because of the intubation. :(

Saturday Jan 4th

- Upped your pain meds because you aren’t comfortable.

- It kills me to see you like this, I hate that you are hurting.

- Surgically you are healing well.

- I want this to be over already.

Sunday Jan 5th

- You are better, though still having periods of inconsolable crying

- One day at a time. We can do this.

Monday Jan 6th

- I just spent time with you.

- You are healing though still uncomfortable, it will just take time… I’m trying to be  patient but that isn’t something mommies have when it comes to their babies.

- Waiting on doctors to give a final discharge plan.

Tuesday Jan 7th

- Finally a plan!

- Upping feeds to bolus feeds, MRI thurs, stay the night Friday… COME HOME Saturday!!!!!

- I felt like this day would never come

Thursday Jan 8^th

- I wend into the hospital to stay an extra night.

- I’m just so ready for you to be home.

- Medical equipment company came in and gave me your pump, food, and suction  equipment for home. A little overwhelming but we can do this.

- You and I roomed together out on the floor so I can practice with my pump.

- We finally got to spend some quality, peaceful time together.

- You kept me up all night haha I loved it.

Friday Jan 9^th

- Lots of just hanging out and working with the equipment we will have at home so I can  get comfortable using it.

- James brought Ethan up for dinner and we all ate dinner together like a family. Finally  feeling like a family of four.

Saturday Jan 10^th

- Today is the day!!

- You are coming HOME!!

- Words couldn’t describe how happy we were.

- I cried the entire way home.

- Grammy and Grampy came over for a celebratory dinner at our house to love on you.

After 6 weeks in the NICU, finally life as family of four can begin. :)