The Home Stretch?
- Ashley
- Jan 16, 2020
- 5 min read
Disclaimer: lots of typos. I wrote this one on my phone!
I almost can’t believe the numbers I’m about to type. The boys are 10 weeks old! 71 days since they were born. Today, their gestational age is 38 weeks. Two weeks until they’re considered full term! And from where we started ten weeks ago, in my opinion, they are doing great!
It’s truly amazing how far these boys have come.
Here’s a brief summary of how they are doing today. Following the summary is a list of what all they’ve gone through since conception.
Brendan is doing really well! He’s been breathing room air for over a week! He’s been in a crib, maintaining his temps for the last 5 days. He’s gone from 1040 grams to 2468 grams! That’s 2pounds 5oz to 5pounds 7oz! He’s really filled out and is VERY feisty. He loves a bottle, although he only gets 5mLs twice a day. Today, they increased his feeds and took him off his IV nutrition! Our goals for him are to gain weight. I spoke to the doctor today and it sounds like his surgery to reverse his ostomy will be on the 29th! After that procedure, if all goes well, feeds will be resumed and he can come home! I’m hoping between now and then everything with him stays status quo and then my little miracle can come home!!
Wright is exceeding all expectations, except one. Bottle feeding! This chubby little guy is just lazy! He could’ve come home three weeks ago if he would just stay awake for his bottles. So that’s all we’re waiting for! They keep telling me a lightbulb will go off for him soon and he’ll be out before I know it! Anxiously awaiting that day! But in the mean time, im going to ”Room In” with him starting Monday where I will exclusively breastfeed him for 48 hours and see if he gains weight. If he does, he gets to go home!! He’s gone from 1460 grams to 3301 grams! That’s 3pounds 3oz to 7pounds 4oz!
I‘m still hanging in there! Tomorrow will be day 100 in Pensacola for me. Day 72 for the boys. I’m still tired. Still anxious. Most of all, I’m ready. So ready for these boys to graduate. So ready to move back home. To have my family back together. To be able to spend time with all three of my children together instead of spread out between cities and houses. To sleep in my bed. To not sleep alone. To have my routine. To be in the same place as my husband. To snuggle my dogs. For this drive to not be a part of my routine. To find out what my new normal is! Whatever that may be!
With all that has taken place, I still feel so fortunate and blessed. These boys have beaten the odds! They’ve survived! They are my miracles! We will all be home before I know it. I listen to “Almost Home” by Mercy Me on repeat and daydream about driving my boys home for the first time.
Thank you God for getting us here. 38 weeks is a huge milestone! There is light at the end of this long tunnel!!
If you’re interested in a play by play of what my boys have been through, see below!
Thank you for following along and for all of your prayers and support!
Let’s recap with Brendan.
September 11, 2019
Verified PPROM (ruptured amniotic sac)
September 11-November 3
1-2.7cm fluid measured in amniotic sac
Not the ”presenting” twin (he was higher up, farthest away from my cervix) Considered ”Baby B”
Multiple monitoring sessions where his heart rate was too high.
November 4
He swaps places with Wright, moves head down. Now considered “Baby A”
November 6
He signals to my body he’s ready for the world! Happy Birthday!
6:05pm 1040 grams
November 8
1st Surgery. Penrose drain placed for free fluid and air in abdomen to hopefully allow a perforation to heal.
November 9
Goes under the bili light for jaundice.
November 13
Exploratory surgery and ostomy procedure
November 14
Blood transfusion
Extubated
November 19
Hydrocele around testicles (swollen with fluid)
November 23
Off of feeds for 24 hours due to constipation
November 25
Possible blockage started on antibiotics
November 28
Still off of feeds. He starts passing hard bean like stools through ostomy called lactobezoars
(possibly due to the fortifiers they were putting in his milk called prolacta)
December 1
Blood Transfusion
December 2
Back on feeds. 2ML/hour continuous
December 3
Lasix administered due to Edema
December 7
Off CPAP
December 8
Back on CPAP
December 10
Started dumping fluids. Prolacta administered by mistake
December 11
Off feeds again
December 15
Back on feeds
December 17
Abscess formed on surgery incision
December 18
Abscess confirmed as MRSA
December 19
On room air!
December 21
Back on cannula
December 27
Started dumping again
Blood transfusion
Off of feeds for 6 hours
December 30
Lifted the top on isolette
January 3
Put in a Crib!
January 4
Back in isolette for failing to maintain temps
January 6
Blood Transfusion
January 8
Big drop in heart rate and oxygen saturation. Oxygen bag administered
January 12
Back in a crib!
January 16
Doing really well! Output is a little high but not considered “dumping”.
Phewww that’s a lot!
Ok, Baby Wright:
November 6, 2019
Born via cesarean
1460 grams at 7:15pm
November 9
Bili Lights for jaundice
November 11
Breathing on his own!
November 13
Ultrasound shows grade 2 brain bleed
November 18
Back on respiratory support
November 29
Head ultrasound shows brain bleed is resolving!
December 2
Back on room air
December 3
Back on respiratory support
December 5
First bottle feed!
Graduated to Level II
Moved upstairs!
December 11
First breastfeed!
Off of cannula
December 13
Back on respiratory support
December 14
Moved to a bassinet!
December 16
Off of cannula for good!
Lyrics from Almost Home-Mercy Me
Are you disappointed? Are you desperate for help? You know what it's like to be tired And only a shell of yourself Well you start to believe You don't have what it takes 'Cause it's all you can do Just to move, much less finish the race
But don't forget what lies ahead
Almost home Brother it won't be long Soon all your burdens will be gone With all your strength Sister run wild run free Hold up your head Keep pressing on We are almost home
Well this road will be hard But we win in the end Simply because of Jesus and us It's not if but when So take joy in the journey Even when it feels long Oh find strength in each step Knowing heaven is cheering you on
We are almost home Brother it won't be long Soon all your burdens will be gone With all your strength Sister run wild run free Hold up your head Keep pressing on We are almost home Almost home Almost home
I know that the cross has brought heaven to us But make no mistake there's still more to come When our flesh and our bone are no longer between Where we are right now and where we're meant to be When all that's been lost is made whole again When these tears and this pain no longer exist No more walking we're running as fast as we can Consider this our second wind
Almost home Brother it won't be long Soon all your burdens will be gone With all your strength Sister run wild run free Hold up your head Keep pressing on We are almost home Almost home Almost home
We are almost home Almost home Almost home
WE ARE ALMOST HOME!!!
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