Tuesday, January 12, 2010

The NICU Journey.....The First Two & Half Weeks

Charlotte & Madison were born on Christmas Eve at 28 weeks, 3 days. Today they are 31 weeks. It's all been a little surreal considering I had my mind wrapped around making it to 32 weeks before delivery. The girls had a different path in mind and decided they wanted to arrive sooner. So, here I sit, belly gone and two little ones in the Neonatal ICU. It all happened so fast, one minute I was carrying these two little girls and the next, I was wheeled into surgery and they were no longer with me. I miss them terribly because they are away from me. But, I am optimistic and so hopeful at this point in the journey because our little girls have been doing so well.

Charlotte Renee on the day she was born December 24th 2009....

Charlotte Renee a little over a week later.....January 3, 2010

Madison lee the day she was born December 24th 2009......

Madison Lee a little over a week later January 3rd 2010.....

On the day of their birth, the girls were placed on CPAP (Continuous Positive Airway Pressure) to assist with their breathing. This is a description I found online regarding the CPAP:

A nasal CPAP device consists of a large tube with tiny prongs that fit into the baby's nose, which is hooked to a machine that provides oxygenated air into the air passages and lungs. The pressure from the CPAP machine helps keep a preemie's lungs open so he or she can breathe. However, the machine does not provide breaths for the baby, so the baby breathes on his or her own.

The girls were only briefly intubated (sp?) to administer Surfactant to their lungs which we were relieved about. They have not spent a day on the ventilator because they have been breathing on their own. The CPAP merely provides support in that endeavor because preemies often forget to take breaths. By their 5th day in the NICU (the 29th) the girls were off the CPAP and only require a nasal cannula which provides extra flow and pressure to their lungs to help them remember to breath. The girls are both breathing on their own, they fluctuate between breathing room air and on occasion a combination of room air and 5-10% extra oxygen.

The girls tend to have events on a daily basis, which is normal for preemies of their age. The different types of events include Apnea spells, Brady's & DSats. The Apnea spells happen while the girls sleep and due to the prematurity, forget to breath. When this happens,it usually doesn't last too long and either they recover on their own or we just rub their backs, give them some stimulation and they wake enough to remember to start breathing again. The Brady's (Bradycardia) are when the heart rate drops. The same procedure applies if they do not recover on their own for Brady's. The Dsats are desaturations in their oxygen level. This can be resolved on its own and sometimes, they simply bring up the O2 slightly from the room air level. The reason for all these events is due to their neurological systems being immature and they are very common. As they get older, they will get fewer and farther between. We are already seeing days where they only have a couple. In addition to the monitoring, the girls have been given their daily Starbucks dose of caffeine which helps with these events.

Overall, outside of the events, our girls have done pretty well. They've had some "tanning" sessions on and off the first couple of weeks to remedy jaundice. We had an ultrasound done on their heads to check for brain bleeds, which can be common in preemies born this early. The bleeds can vary from a Grade 1 bleed to a Grade 4 bleed. Grade 1 usually resolves itself and doesn't cause long term damage from what I'm told. Grade 3 & 4 is when quality of life can be affected. Fortunately, 72 hours after their birth, the girls were checked and there were no bleeds in either of them! We were SO relieved and SO thankful for that news. We do have another look at 30 days of life, but according to the doctor, if we did not find a bleed in those first few days of life, the incidence of bleeds after that is lowered significantly - so we are optimistic.

Additionally, the girls hearts were checked to see that the holes that remain open in utero had closed. Madison's had closed up by the time they checked. Charlotte's had not. She still had remnants of the opening.

The opening in Charlotte's heart was minimal, so the doctors lowered her fluid intake and have waited to see if it will close. As of a few days ago, the nurse could no longer hear signs of the PDA. So we are optimistic that it has closed and no further intervention will be needed. The more serious of PDA's require medication and potential surgery. We are hopeful that Charlotte will not need either of those treatments.

The only other blip on the radar is the girls had a night where they both doubled their events (they seem to sync up with one another pretty regularly) and so the doctors suspected infection. After a large battery of tests; blood, urine and spinal cultures - it turned out there was no infection. Madison's culture showed infection initially but they determined over time that the needle must have been tainted when the sample was being taken! That upset me a bit, but regardless, they would have run these tests, I just wish we hadn't had the scare of possible infection.

The girls are doing really well with their feeds and their weight. They are both up to 1 ounce of milk and both have exceeded their birth weight. We officially have 3 lb babies!!

We get to hold the girls daily now. We do Kangaroo holds (skin to skin) and we also hold them wrapped up like little burritos. I personally love the Kangaroo holding. I miss having my girls so close to me! Today, our oldest daughter Jordan will get to hold one of her sisters if they are doing well. She is tickled to have the opportunity since she has had to watch everyone else have the opportunity and we've made her wait.

SO, that's our journey to date in the NICU. Our girls have exceeded our expectations in their short life. We feel blessed beyond belief that they are doing so well and we really hope to avoid any major setbacks. We are counting our blessings and hoping to bring home healthy, happy, chunky babies within a couple of months.

Our First Family Photo!! January 10, 2009
Daddy holding Charlotte, Mommy holding Madison, Big sister Jordan in the front


Melis said...

Wonderful news! So stinkin happy! Hugs to all of you!

girlytwins said...

I just love that your journey in the NICU is going so well. Ours was very similar and my girls are two thriving 3 year olds. It goes by so fast.

You have a beautiful family. I bet Jordan was so excited to hold her sister(s).

B said...

Hang in there! Your girls will continue to grow bigger and stronger each and every day. Your family is beautiful!

danapate said...

Your NICU journey sounds to be going wonderfully. Our guys were SO much weaker...whimpy little white boys..but now they are 20 pounders and almost walking...seriously can't believe a year ago I was literally sitting where you are in the NICU journey. We brought our babies home on Jan 28th...almost as emotional as the day of their birth. We stayed 49 days..we have had absolutley NO problems so use us (along with so many other preemie mommas) as encouragers. Preemie babies are incredibly special because you will see the miracle of God's goodness in every little step along the way as you watch them grow and develope. The girls look amazing. And you look so well "put together" ...I look back at our NICU pics and I look like a totaly wreck...couldn't have been the other three girls I was trying so hard to be "super mom" to. Use this time with the twins in the NICU to re-kindle that bond with Jordan. She is so ecstatic to have mommy back home I'm sure. By the way, not sure if I ever asked you to send me your address or the hospital's address, but I have something for the girls i would love to get to you while they are in the NICU...an angle sent one to us during our journey.

my email address is dana.pate@yahoo.com


Christine:) said...

Love the pictures and I am so happy that the girls are doing so well. Great explanation of the medical terms, Mama;) This RN is impressed;)
Your family of 5 photo is so cute- I hope Jordan is able to hold them like you anticipated:)

angie said...

What a wonderful post. You are going to appreciate this information when they are 4 and you have a hard time recalling the details. I'm still amazed how well they've done. My boys were 33w3d and one had to be ventilated....so it shows how strong they are.

I'm so glad they didn't have an infection.......next time I blink they are going to be home, arent' they? :)

luvnlucyndesi said...

I am so happy that they are so much closer to going home. My husband and I had a preemie on the 21st of January and she is still in the NICU, we aren't sure how long she will be there as she is still having DSATS, it is so hard at times to get through this, but we pray all the time. Thank you for your post, it is very encouraging because so many times we feel like no one understands what we are feeling when in fact I know there are people that really do. I will pray for your little ones too, your family is beautiful. God Bless.