The Preemie Experienceby Sandra D Moore
The preemie experience is the shattering of all your dreams
For a normal, healthy delivery,
Of the ability to carry home a beautiful squirming bundle
After a short stay in the hospital.
It is lying there in your hospital room listening to
The happy sounds of whole families joined
Together by the birth of a grandchild, cousin, niece,
Or nephew, and knowing that your
Child is miles away and may not survive long enough
For you to see or simply touch.
It is that first glimpse of a skinny, scrawny, not much bigger
Than a Barbie doll child
And feeling, fear, awe, and joy for such a fragile soul.
It is sitting by your baby’s “bedside” day after day,
Week after week, month after month,
Alternating between the emotional high of “Look, her eyes are open,” or “She’s crying!”
And the lows of “I’m sorry. Something has
Shown up in the ultrasound,”
Or even “There is nothing we can do…”
It is hearing the alarms go off for the twentieth time in less
Than fifteen minutes because your
Child’s heart rate keeps hitting zero.
It is watching children dying around you, wondering if
Your child will be next.It is hearing your child’s cry of distress as the nurses
Insert yet another IV and do another
Round of daily blood tests.It is meeting other parents of children who are doing far better
And wondering, “Why me?”
And meeting parents of children who have just died,
And praising God for His mercy
To your child and feeling guilty because your child is alive
And someone else is grieving for theirs.
It is days of nightmarish testing and coping with less
Than positive results to the tests.
It is days of joy at seeing the first eyelash appear,
The child gain a whole ounce in one day,
And two bright shiny eyes look at you and into your soul,
And knowing that your child now recognizes you as Mama or Dada;
Or perhaps looks at you and does not see you at all…
It is that final hurdle before coming home!
It is the sorrow of waiting for the monitor company
Representative to show you what to do
If the alarm sounds when your child is choking,
Gasping for breath, or simply dying.
It is the joy of just being away from all those nurses
And tubes and wires and beeps, and
Walking into the nursery you hastily prepared because, after all,
The child wasn’t due for another three months!
It is thinking the nightmare is over…only to realize it still
Continues in the form of
Such acronyms as PVL, RSV, BPD, CP and numerous others.
It is the final realization that those developmental delays
Have to be dealt with,
That reflux is a normal and unfortunate occurrence in most preemies,
That the constant fight to gain weight is in direct proportion
To a preemie’s ability to do so.
It is watching a child struggle to pick up his or her head, sit,
Crawl, or walk.
It is witnessing only silence when the child should be babbling,
Because the child cannot hear.
It is the mental images of a child running and playing
And communicating with others in a
Perfectly normal manner that are marred when you face years of therapy
In order to simply get the child to eat by himself or herself,
To talk or walk and then run.
The preemie experience is a journey…
A journey through your soul in order to find the faith and strength to cope,
A journey of the mind when you face the emotional weariness,
A journey of the heart…to accept that, no matter what,
This child is yours,And you will love this child no matter what.
The preemie experience is the shattering of all your dreams
For a normal, healthy delivery,
Of the ability to carry home a beautiful squirming bundle
After a short stay in the hospital.
It is lying there in your hospital room listening to
The happy sounds of whole families joined
Together by the birth of a grandchild, cousin, niece,
Or nephew, and knowing that your
Child is miles away and may not survive long enough
For you to see or simply touch.
It is that first glimpse of a skinny, scrawny, not much bigger
Than a Barbie doll child
And feeling, fear, awe, and joy for such a fragile soul.
It is sitting by your baby’s “bedside” day after day,
Week after week, month after month,
Alternating between the emotional high of “Look, her eyes are open,” or “She’s crying!”
And the lows of “I’m sorry. Something has
Shown up in the ultrasound,”
Or even “There is nothing we can do…”
It is hearing the alarms go off for the twentieth time in less
Than fifteen minutes because your
Child’s heart rate keeps hitting zero.
It is watching children dying around you, wondering if
Your child will be next.It is hearing your child’s cry of distress as the nurses
Insert yet another IV and do another
Round of daily blood tests.It is meeting other parents of children who are doing far better
And wondering, “Why me?”
And meeting parents of children who have just died,
And praising God for His mercy
To your child and feeling guilty because your child is alive
And someone else is grieving for theirs.
It is days of nightmarish testing and coping with less
Than positive results to the tests.
It is days of joy at seeing the first eyelash appear,
The child gain a whole ounce in one day,
And two bright shiny eyes look at you and into your soul,
And knowing that your child now recognizes you as Mama or Dada;
Or perhaps looks at you and does not see you at all…
It is that final hurdle before coming home!
It is the sorrow of waiting for the monitor company
Representative to show you what to do
If the alarm sounds when your child is choking,
Gasping for breath, or simply dying.
It is the joy of just being away from all those nurses
And tubes and wires and beeps, and
Walking into the nursery you hastily prepared because, after all,
The child wasn’t due for another three months!
It is thinking the nightmare is over…only to realize it still
Continues in the form of
Such acronyms as PVL, RSV, BPD, CP and numerous others.
It is the final realization that those developmental delays
Have to be dealt with,
That reflux is a normal and unfortunate occurrence in most preemies,
That the constant fight to gain weight is in direct proportion
To a preemie’s ability to do so.
It is watching a child struggle to pick up his or her head, sit,
Crawl, or walk.
It is witnessing only silence when the child should be babbling,
Because the child cannot hear.
It is the mental images of a child running and playing
And communicating with others in a
Perfectly normal manner that are marred when you face years of therapy
In order to simply get the child to eat by himself or herself,
To talk or walk and then run.
The preemie experience is a journey…
A journey through your soul in order to find the faith and strength to cope,
A journey of the mind when you face the emotional weariness,
A journey of the heart…to accept that, no matter what,
This child is yours,And you will love this child no matter what.
HADASSAH
129 days... That's how long the Nicu Experience lasted for Hadassah. I couldn't believe my ears when the discharge nurse called me on March 26th to tell me that Hadassah was scheduled for discharge the following day if she didn't have a Brady within the following 24 hours. I went up to visit her that day with my parents. I held her, I fed her, I kissed her and then it happened... the Brady alarm went off and instantly my eyes watered. I knew what that meant - she was no longer coming home the next day. Brady alarm goes off = 48 more hours in the Nicu. But then the nurse came in and checked Hadassah who's heart probe was on her belly button. The nurse explain that the Brady machine was not reading accurately so it didn't count. Instant relief washed over me. I kissed Hadassah and tucked her in for the night before leaving her for what I hoped would be the last time. I came home and went into nesting mode. I cleaned everything! I washed clothed, bedding, etc. I sterilized bottles and put together a diaper bag. It was midnight when Tito and I laid down in bed. I was anxious and eager to go to bed. But I couldn't sleep! I was nervous, excited, scared out of my mind! I was dreading the morning call to the Nicu in fear that Hadassah had a Brady over night. We were so close to bring her home and I didn't want anything to mess that up! I slept 2 hours (broken up in increments of 5 minutes). I called Virtua at 8am and the first words out of the nurses mouth was "no brady last night, she is ready for discharge!" I hung up the phone and ran outside (Tito was putting the car seat base in the car). I starting running around the car, fist pumping (Do people still do that?) and I was crying, "No Brady! No Bady! She's coming home!" Then it wasn't just me jumping up and down with a cat smile from ear to ear... Tito to was joining me now! We ate a big breakfast. We drove to Babies R Us in Deptford, we purchased formula and headed to pick up our beauty! We waited an hour for the hospital photographer to come. We dressed Hadassah in a beautiful yellow dress and for the first time in 129 days we pulled off all of her probes, wires, cords, MACHINES! I felt like running out of the hospital with her! LOL .... By 2pm we were in the car and on our way home with Hadassah! I cried the whole way home. I couldn't stop thanking God enough for his grace and mercy and for allowing us to bring this child home. The Nicu wasn't easy, it still isn't with Isabella and Cianna still at Chop. However, we have been very blessed to not have had as many complications as other preemie babies have had. The Doctors and nurses are amazed at how well my girls are doing. But my God is the ultimate Doctor and He has seen my girls through and through... Hadassah has been home for a week and a day now. She has had a very exciting week. We stayed in on Thursday, Friday and Saturday. Saturday night my sister in law came from San Francisco. On Sunday Hadassah went to church and then to Chop to visit her sisters. On Monday she had her first pediatric appointment where she peed the entire exam table O_o ... She marked within the 53 percentile for her adjusted age which the pediatrician was so excited about. She gained 3 ounces since leaving the hospital which was also great! She got her 4 month shots and was told to come back in 2 months for her 6 month shots. We went home and called it a day. Tuesday we went to Lancaster, Pa and watched Moses at Sight & Sound. Can you believe she slept through it all! Praise God! Wednesday was a pajama day and we stayed in. Thursday (Yesterday) we went to Chop and spent time with Isabella and Cianna. Today we are staying in! Hadassah is a great baby! She wakes every 3-4 hours for her bottle and gives me a good 3-4 hours of sleep at night in between her feeds. She feeds at 10pm, 2am and then 6am. So I get a good 7-8 hours of rest (broken) at night. Not bad! Our only issue is evenings where she is extremely gassy, uncomfortable and cries/screams from 6pm to midnight! I reached out to my fellow triplet moms who recommended Gripe Water. We tried this last night and it worked! Seems like Hadassah gets Colic in the evenings. Last night she was fed, burped, asleep and in bed by 10pm! Praise God! So all in all it's been a great week for Hadassah (and us as well)!
Wednesday, March 26th - The day before coming home & moments before the false brady!
Formula run! LOL
Right outside of Virtua excited to be picking up Hadassah!
Tito's final scrub before entering the NICU at Virtua
My final scrub!
Hadassah dressed and ready for her hospital photo!
Mommy and Hadassah!
Daddy and Hadassah
Hadassah is ready to go home!
Taking a nap in her crib!!!!!
Hadassah with Titi Vero!
The first of many father/daughter moments!
Hadassah with Titi Laura
Hadassah with Titi Carmen
Hadassah with Guelito (Grandpa)
"Nana, you telling me I can't have no more milk?" - Hadassah LOL
Hadassah's first church service!
Daddy filing Hadassah's Nails!
Length check at the Pediatrician's office - Obviously she hated it!
Pouty lips after her shots!
"Living at home is great!" ~ Hadassah
ISABELLA
Isabella has had a great week! She is taking 8 bottles a day but is not taking the whole bottle at every feeding. Therefore she is still in use of the ng-tube. On Sunday, March 30th Tito and I went up to Chop and completed our NG-tube course where we learned how to insert the feeding tube. On Thursday, April 3rd we went back to CHOP and completed our at home oxygen course where we learned how to manage the oxygen tank and monitors at home. We also took hers and Cianna's car seats for their car seat test. We completed all of the discharge pre-requisites and we confirmed with the NICU doctors that Isabella is ready to come home on Monday, April 7th! So now we wait for the weekend and see what happens but God willing she'll be coming home on Monday! She will be coming home with a feeding tube and on a very little amount of oxygen but I'm so freaking happy to have her home! Many preemies come home on these devices and within a month are off of them due to tender loving care 24/7 by their parents... I'm ready for this! Bring it on! 
My beautiful Isabella~
"Mom can I go home now?"
Isabella taking a nap after giving mommy is work out during a pamper change!
March 30th - Reunited with her sister - Bella & Hadassah
"Mommy I love my Senor Frogs!"
CIANNA
Cianna also had a great week. She is scheduled to come home with Bella on April 7th or Wednesday the 9th at the latest! So within 5-7 days we will have all three girls home! Cianna will also be coming home with a feeding tube and with oxygen. She is on very little oxygen so that is no concern. The doctors believe that within a month she'll be off of it. Cianna had a swallow test study done on Monday. It revealed that she is aspirating when she drinks/swallows her milk from the bottle. It was determined that the formula is too thin so she is only allowed to have two bottles a day with rice in it to thicken up the formula. But out of 60cc that she needs to take she only takes about 10 - 15cc because it's so thick that she has to suck extra hard to get it out. I don't get it, it sounds odd and I have even questioned the nipple flow size. So this means that her main method of feeding will be by ng-tube. But again - she'll be home. In 6 weeks I'll have to take her back for a second swallow study. Over the past week they have place Cianna in a swing on full speed which she loves! It's crazy how fast it's going and how calm she is! I need to invest ASAP LOL 
Believe it or not she is sleeping! Yes she sleeps with eyes open.... creepy!
Cece with Nana!
Caught this photo while she was in her swing - the straps you see is a 5 point harness they use at CHOP LOL
Mommy feeds Hadassah and Daddy feeds coffee to mommy!
Cianna is wiped out!
CURRENT WEIGHTS
Hadassah is 8lbs 9oz
Isabella is 8lbs
Cianna is 6lbs
Me - I'm still the same. I did nothing to improve it either. Way to busy right now LOL
OFFICIAL NICKNAMES
Hadassah - Haddie
Isabella - Bella, Bells
Cianna - Cece
Other Important News
Captain America The Winter Soldier came out today! (It's superhero crush Friday) LMBO My wonderful husband will be taking his lovely sister to watch the movie tonight. I'll be waiting for it to come out on DVD and I have no complaints! I absolutely love being with my Hadassah. My sister in law has been here all week and she has been a great help! She leaves tomorrow and I'm going to miss her dearly! But God willing she'll be back soon, with the whole family, for good!
Well I have to go, it's 10am and you know what that means - Hadassah is due for a bottle!
XOXO,
Jackie V.
