Losing Baby Tinley

Losing Baby Tinley

We've sure had to deal with a lot these last few weeks! As most of you know, we lost Baby Tinely, July 14 to an infection (pseudomonas). It was the hardest thing to watch and go through all of it. I had a friend (who's also a nurse of many years) come to the hosptial after I told her what the infection was and that it was in her blood. She prayed with me and started to say things like Tinley may not make it. Obviously being a mom and knowing just 2 days before we were preparring for our "1 month NICU birthday party"-I didn't want to hear any of it. Wouldn't really believe or listen. I called the doctor after she left, and ask if we needed to start thinking 'she may not make it'. He assured me "NO"-we have her on antibiotics and her body seems to be responding. This was Friday morning. We watched her all day Friday on the Oscillator (a machine that basically breathes for the babies and keeps their lungs open at all times-it also shakes her continuosly), watched her continue to swell (they continued pumping fluids in all day trying to get her to pee to see if her kidneys would work), and watched her turning very, very pale. We could hardly even look at her she looked so bad. She wasn't responsive much at all-she would open her eyes, and a slight kick, but not much more. But this response was more than we got on Thursday-so, we're thinking the antibiotics are working. The doctor comes in several times and updates us-really no change-her kidneys still weren't working, her SATs weren't good, her blood pressure was very low. But, this is how a baby responds to an infection-or that's at least what I kept telling myself. My dad and stepmom, Tammy came and got our laundry and invited us out to get a break from the camper and to pick up our laundry. So, at 11 pm, we leave the hosptial and go to Blanchard. At 3:30 a.m. I called to check on Tinley-the nurse said there wasn't any change from when we'd left. At 4:15 they called and said Dr. Verma wants to talk to you guys can you come in. So we rush out and to the hosptial (about a 25 min drive). Just as we're pulling into the hospital, they call again and say they've started resuscitation!!! What?! We thought Dr. Verma was going to tell us medication wasn't working and we had to try something different. Or something-definatley not this!
We walk in the room, and they are pumping on her chest!! The most awful sight you can EVER imagine. She laid there so lifeless, with 5-6 nurses standing around her incubator crying terribly! The Dr. standing back giving orders and the respiratory therapist crying hysterically too. The Dr. calls me out to the hall, tells me what's going on as I watched them giving CPR to my baby! Stupid me, go back into the room, and say "So, there's no chance she'll be okay now, is there?" Dr. Verma, "No, this is it, do you want to hold your baby?" It still seems SO unreal! It all happended so fast. And I really, really thought, "we'll make it out of NICU. We may have a few problems, but we'll make it out" There was never ANY doubt in my mind that we wouldn't make it out! I never really believed when they said we would likely face issues due to the brain bleed, that we would. Maybe I'm naive, maybe it's the mom instinct, or just trying to be as positive as I can be to get my family through this-but I really did think everything would be OKAY!
We sat in the room and held Tinley for awhile-her body turned cold and stiff and she started to turn blue. We had no idea how to tell family or friends (afterall we've been downplaying this as "just a simple infection") we didn't want to leave the room so we could hold her as long as possible. Neither of us could even make the call without crying terribly. So, Shane sent a text out and I copied that. Sorry, for those of you that got a text and thought it was inappropriate-we just didn't know how else better to handle it and didn't want anyone to hear us breakdown.

This is really happening....

My mom, dad, and Tammy came up that morning to be with Tinley one last time. The funeral director, who is close friends with Shane's parents had been in contact with Shane and his parents all morning. But as soon as I saw him walk in with the basket for Tinley-my heart just sank and I completely lost it! It was like this was what really made it real! He sat down with us and started asking a lot of questions-through all of this, I've tried not to ask "WHY?" and be positive, but I immediatley started thinking "this just isn't right, planning your own baby daughters funeral!" Making decisions about where she will be buried! What music you'll play....all of it! Her own sister never even got to take a picture with her!! Or lay next to her!

Things will be so different...

When you walk into NICU, you have to give your baby's name-we were so use to saying, "We're here to see the Powell Twins." And when calling, we'd say "We're calling to check on our girls." It still happens some and we catch ourselves and kinda realize again everything.

We have 2 of everything we bought-2 sets of clothes, 2 recliners, 2 sets of animals/blankets etc. What are you suppose to do with all of this stuff?? Obviously, we'll have a keepsake box of some of the most memorable things, but others we aren't sure.

I envisioned the girls would be so close, like Trina and I were. Play sports together, cheer, dance, classes in school, sleep together-all of it! Now, I hate all of this for Timber! I feel like she will have this piece of her always missing and I can't do anything about it!

Our NICU journey: month 1

The first few days:

Shane and I went down and saw them the day after I delivered. I remember thinking they were so very tiny! Watching Timber (baby b) was so exciting! We thought Baby A was the mover and the active one but after watching Timber, we knew it was her all along! It was so neat watching how she
kicked and moved because it's exactly what I felt!

The second day was tough! Very, very tough! Timber got down to 1 lb 5 oz! She looked terrible! Her skin was so thin and you could see every single rib! She tried crying but you couldn't hear her because she was on the ventilator. We went home late that afternoon......going home without your babies sure is heartbreaking!

June 20....., yes, one week after they were born, we finally got to hold Timber! She was itty bitty!! When we hold the babies, it's called Kangaroo Care. They must be held skin to skin-just like a little kangaroo pouch! Tinley got her first blood transfustion today-which surprised us b/c we thought she'd do much better than Timber since Timber was the one being deprived of blood and nutrients.

They have started to develop personalities and it's so neat to watch! I think Timber will be the relaxed, calm baby and Tinley will be just the opposite just like her momma! Timber is pretty calm during her diaper changes and temp checks. Tinley likes to "throw a fit" when the nurses mess with her! Our "fit throwing" is so very diffferent than most babies. They can't cry with their vents in, so their way of showing us they don't like something is by "dropping their sats" and their heartrate elevating.

Tests & Possible Complications:

They start telling us about all the tests they run and complications we may face. Breathing problems, heart problems, brain bleeds, infections, anemia, vision problems. I had good hopes of getting out of here with 2 healthy babies, but after they've told you all that can go wrong, you begin to wonder, how can you escape with no complications! It seems nearly impossible!
I start reading about some of it and freak myself out! Now I refuse to really even listen very closely b/c I really don't want to even know unless it is affecting us.

When they are 1 week we, they start getting head ultrasounds to see if there's any bleeding in the brain. Timer's comes out normal, but Tinley looks as though she has a Grade 2 brain bleed on one side. The dr's tell us not to worry, usually these fix themselves, if it was a grade 3 or 4, we would need to be more worried. The following week, they tell us a Grade 2 on one side and a Grade 3 on the other. Discouraging news, but we can handle this. Week 3, the brain bleed is now a Grade 3 on both sides. So many questions and unknowns now! And we won't know what, if any, long term effects she'll have. Or if the bleeding has even stopped! We'll have one more big ultrasound July 16.
Brain bleeds happen in premies b/c the in their blood vessels aren't fully developed and are very fragile. As babies get older, the blood vessels grow stronger.

July 8-they have their first vision tests for ROP (retinopathy of prematurity). ROP is improper growth of the blood vessels on the retina-when babies are born early, the blood vessels may begin to grow so quickly that the growth damages the retina. We PASS the first test!! They begin to test every week to make sure things are okay. 

July 12-the doctor calls me early, early in the morning and says they have started Tinley on antibiotics, she looks as though she may have an infection. He calls her "lethargic" and "very weak." The day is choas! Nurses, the doctor, and the respiratory therapist are gathered at her incubator checking blood gases, doing chest xrays, checking her tummy, pumping her full of fluids b/c she hasn't urinated at all-just all kinds of madness!  She's put on a different breating machine called an oscillator (??)-that basically keeps her lungs open all the time. Her heartrate is off the charts-200+ and many times 220-230! Normal is 160-180 for her. Hardest day here so far! So scary b/c obviously with this much attention, she's very, very sick!

Our "temporary home"

We moved a camping trailer in the parking lot of Mercy. Let's just say-living is tight! The first couple of weeks we couldn't get the fridge or hot water to work without tripping the breaker. We were showering in the family waiting room....not fun!! And trying to keep breast milk cold at night with no working fridge was getting old! Thankfully, we have fixed the problem now. We decided to bring Ruffin up. It's been nice having him-we'll take him walking around The Greens and play in the parking lot. Gives us a break from that tiny camper and the crazy hospital room!

Our complicated pregnancy story...

Just a little update on how everything is going! As our girls turn 1 month old, it's hard to believe we already have the first month past us! I'll start from the beginning as we've had many people asking questions on how this all started....sorry for those of you know the story!

At 18 weeks, we went in for our first ultrasound appointment with the specialist. We were so excited, thinking this would be an easy pregnancy and glad to be expecting twins! After the doctor ask a few questions, she said she needed to meet with us in the consulting room. We knew it wasn't good news by her reaction. In that appointment, she told us we had a very rare condition called TWIN to TWIN Trasnfusion Syndrome (a condition where one baby "donates" blood & nutrients to the other baby). The donor baby becomes weak and anemic, the recipient becomes large and overloaded which can lead to major heart problems. She told us we needed to get to Houston that night-she'd already made us an appointment for 9:00 a.m the next morning. By Friday, I had hours and hours of ultrasounds and LOTS of pain from all the fluid build up. The doctor decided laser ablation surgery (surgery that uses a laser light to close the blood vessels shared between the babies) was the best option to save both babies (without treatment, there was an 80- 90% chance we would lose both babies).

This was the best I felt in weeks! The fluid build up was killing my back and kidneys! They removed 4.4 lbs of fluid!

Leaving the hospital feeling like a new person!

The cute heart shaped bandages! The nurses do these for the kiddos!