Worth

In these past two weeks since she's been home, I come to the opinion that having twins with one requiring medical care must be like having triplets. It's not that the routine care Tara requires is terribly complicated (though recognizing signs/symptoms of problems and discussing modifications to care with her doctors is), but that it is time intensive. I've got them sleeping through the night. I've got them sleeping at the same times during the day for the most part. Finally having continuity of care has her health as stable as it has ever been. But it doesn't matter. Because every 1-2 hours something has to get done except for one 4 hour gap from 4am-8am. Here is a short list:

1. 6 different medications delivered on a  strict schedule
2. Breathing treatments every 6 hours
3. Chest physical therapy every 6 hours
4. 2-3 bottle feeds per day for 15 minutes, requiring the feeding pump to be turned off for an hour beforehand. Her oral feeds will be upped gradually in frequency and duration to get her to 100% oral feeds, hopefully before she starts solids in 4 1/2 months.This will make things much more time intensive.
5. 2-3 doctor appointments or lab tests per week
6. About 2-3 calls about doctor appointments or from doctor's offices, nurses, case managers, social workers, or insurance compaly representatives per day
7. Rinse and replace the formula in the feeding bag/pump every 4 hours
8. Replace the feeding bag in the pump daily.
9. Replace the BARD button tube weekly
10. Wound care at least two times per day.
11. Tummy time for both babies for 15 minutes daily
12. Baths for both babies every other day
13. Sterilize bottles and pacifiers daily.
14. Mix 24 cal formula pitcher daily
15. 3 medications daily for my son

In between all that you have to cram in around 14 diaper changes per day and then 7 bottle feeds for my son. Then throw in all their laundry. When they are awake you need to be awake and playing with them and stimulating their development, especially given their prematurity and risk for delays. Then sometimes they cry for gas pains or no reason at all and you need to hold and soothe them. She has a big temper and it can take a half hour to get her calmed down. Oh yeah...and I have to eat and sleep occasionally.

If it was just two healthy twins with the requisite bottles and diapers our original plan would have worked. If our insurance had approved private duty nursing (which babies with less medical need get approved all the time I'm told by our Home Health Nurse), our plan would work. (We are now attempting to get it covered through my husband's insurance or other social service programs, but that will take time and there are wait lists.) If I made a bunch more money than the skilled assistive care she would require per month, it would work. If I didn't have debt to pay off from surrogacy, infertility, and previous medical expenses that insurance didn't cover and a car that needs replacing next year, it would have worked.

But as it is, there is just no way physically or financially I can continue to work full time and give Tara the care she needs and get enough sleep...even with all the help my in-laws have given us and having refinanced our house on Monday for substantial monthly savings. I'm severely sleep deprived even while I've taken two weeks off of work and had our in laws come in and help! My husband's job evaluates him solely on his speed in a call center environment, and him going it alone while I work at night has him so tired that it slows him down at work and can put his job under threat if it continues.

Fortunately I have a retirement account that I can use a portion of to resolve financial concerns we have and to make it possible for me to take some time off to care for her. With careful investment and savings moving forward in our future I can restore and double that account in half the time. In a short time we'll be in a much better situation for me to return to work at either my old job or a new one.  Not only will Tara's medical regimen reduce dramatically and some of her health care issues improve, but we will  then be able to afford skilled care even if we can't get coverage for private duty nursing. In general, a lot of things get easier for babies the older they get, and Tara will outgrow her need for the G-tube and meds and breathing treatments, and eventually her lung disease entirely.

As much as I love my current workplace, I am at peace and much more relaxed since I've made this decision because I know it is the right one for my family. Having a family means making some hard decisions, but somehow it is so much easier to make them than before.

There were times in my darkest days I wondered if maybe the pain of infertilty was too much of my own making. That perhaps finally having children wouldn't actually offer me the glorious bounty of happiness that I had imagined and mourned for daily.

Nope. It is even better than I ever imagined. Even when I haven't showered or shaved and am wearing the same formula covered clothes for a number of days I'm not even sure of, and am so tired the world is blurry around the edges.

Notice that I'm not saying "those eight years of infertility were all worth it." I won't minimize or rewrite the past. The present does not erase it. I won't say "I wouldn't change a thing" because it brought me to where I am now. Call me cynical, but I don't think those eight years are somehow worthwhile now because it makes me appreciate my babies more, I'm a stronger person, it has taught me so many life lessons, or it is the cause to my current effect. Sorry, but I'd still rather not have gone through it and popped out a these kids on my own years ago and my biggest problem be my stretch marks and what to cook for dinner. On the same note despite how extraordinary the entire experience has all been, I'd still rather my babies have been born full term and healthy right here in the Texas and not have had to go fight their way through 3 NICU's in 5 months in 2 countries.

It is really hard, and my life sure seems overwhelming when I look at it as written above.

But after a few days of adjustment to our whirlwind routine, it doesn't really feel that way most of the time.  I may have a bad hour or two or even a bad day, but the thing is....every time I reach down to pick them up they smile at me. They even laugh now too! That moment in time makes me happier than anything else has ever made me. And it happens dozens of times a day. I've come to the realization that it's not about making the bad stuff "worth it." It's just that there is so much amazing, fun, beautiful, happy, and incredibly good stuff.

So if anyone out there reading this is wondering if it will all be "worth it" one day when it is all "over," I can't promise that. The best laid plans... But I can assure you, your child will make you more happy than you ever dared to dream of and it pervades every part of you. It's the biggest and best kind of love there is. The time you spent worrying about this child feeling like it was less yours because of an egg/sperm donor, adoption, being an older child, or growing in someone else's belly will seem wasted. So if you are out there struggling with the decisons surrounding making your dream of parenthood come true and trying to make the optimum choice and control every aspect of the outcome like I did, my only advice is  that in the end the "when" will matter so much more than the "how."

Tara and Mommy in the same dress circa 1977!

Coming Home

It wasn't easy. It never is. But she is finally home!

Over the weekend before Christmas I enjoyed my time with Vivek, knowing things would be changing a lot soon. We had a lot of fun and he gave his jumper and musical playmat a test run and seemed to enjoy himself, even if he is a little small for it. He is all about moving around and standing up and now jumping up and down and making noises. 

Don't let the blank face fool you. I'm having fun.









We also had a Christmas photo shoot, and I'm including the best selections.

 



Then we joined my husband's family for a wonderful Christmas celebration in Arlington. Dadoo and Dadima were over the moon to have him at their home for the first time, and the babies got a fantastic pile of presents!

 

Thanks to Dadoo and Dadima staying with our son we were able to room in on Christmas Eve, and all through Christmas day and most of the next day. Princess created some drama that delayed her discharge a day. Typical. She wanted to remind everyone who was in charge.

For some reason in my head I expected Vinnie and I to have a magical night bonding with our baby girl again. I think the only thing that was magical was waking up to white Christmas. The rest of it was incredibly stressful. I have been at the hospital a lot. But it wasn't until my husband and I were tasked with all the rigorous schedule of feeding bag formula changeouts, bag replacements, wound care, medication administration, breathing treatments/CPT, and 2-3 bottle feeds crammed in between that it hit me how hard it was going to be. It wasn't so much all the things required for her care that are daunting, but how in the hell I'm going to fit another baby and any sleep into that mix at all and eventually come back to work. I promised myself I would give it a few days to settle in and see how we can make it work.

Princess did well most of the time, but had a few of her epic meltdowns thanks to her temper and a few poopy diapers. This sets off her reactive airway disease and causes her to wheeze, but usually a slightly early breathing treatment and a little time and her lungs settle back down. 30 minutes before the doctor returned to give her final clearance to take her home she had a meltdown and this time her breathing sounded like rice crispies. I already knew before the doctor walked in that she would not be going home that day. But I wasn't upset. I knew we needed a better plan to bring her home, and had been wanting oxygen at home for just such circumstances for over a month. This time the doctor agreed, as it was the first event like this she had seen. She put her on a diuretic and sodium chloride as well as upping her calories to 24 so she will take in less fluid. Hopefully this will keep her lungs from getting all wet from an RAD episode.  She didn't think insurance would approve oxygen initially, but I argued that we were treating it like an all or nothing proposition when her needs are episodic. My father saved the day and had an oxygen concentrator that he had never used from his aortic aneurysm two years ago, so I drove the next morning after working Christmas night through lots of icy roads and brought it to the hospital. The insurance company fight can be postponed.

 


















I finally brought her home the day after Christmas around 3pm. I got to ride in a wheelchair with her in my arms just like all the other Moms when they leave the hospital! Thanks to a gift card from my wonderful friend Madira, she wore her very special pink bunny sweater dress I had purchased months ago on the third day of her hospitalization when I finally started to believe wholeheartedly that she would survive. It was a big turning point, and I've kept that outfit and looked at it often over these months as a promise of the wonderful day that would surely come eventually. It did!  I added to the ensemble a pair of ruffled pink tights that used to cover up my tiny bottom in 1977, and I have a pile of my old baby clothes my Mom saved for her to wear now.

 


















I had barely slept in two days, but was so happy. And I don't think it is just my imagination, but she seems so much happier here too. Just seeing the look of amazement and smiles on her face when she looked at the toy arch above her sleeper bed melted my heart. This is where she belongs.

There has been no time for all the photo sessions I dreamed of, but hopefully soon I can get some post-Christmas photos that make it look like Christmas and some family reunited shots. Right now I'm just lucky to get a shower every few days and a meal every 8 hours.  It is hard. It's really, really hard. I hate when they both cry so hard and I have to pick one, especially when her's is so heart wrenching and causes a wheezing episode. But when he needs a bottle and she just wants to be held, what choice do you have? I'm hoping the Podee bottle I ordered from Amazon arrives any day now and might help with that situation.

My calendar is full of doctor appointments. She has at least one a week, and will follow up with about 5 different specialists. There are tons of calls from medical supply companies shipping us equipment. My living room has an IV pole, oxygen machine, and nebulizer machine in it. I can now disconnect a G-tube and pause a feeding pump while half asleep to go get her diaper changed. Home health nurses came by for one of the twice weekly visits, and within 5 minutes of talking to me they were so impressed with my knowledge, skill, and setup in caring for her that they said "You don't need education and monitoring, you need help!" I told the nurse our entire story over the next two hours and brought her to tears. She promised to do battle with the insurance company to get us a different kind of nursing care during the day to help me sleep, though the nurse can't care for Vivek so I'll still sleep when he sleeps. We'll see what happens. I'm trying to exist day to day...no...hour to hour. It is very hard. But as always, after a few hours sleep (Thanks Vinnie and Subhash and Savita) and a few baby smiles it all feels so very worth it. I know it will get easier as they both age and her medical needs resolve, and I do my best to enjoy every moment until then.

All Smiles

Well yesterday I did some frantic Christmas shopping, went to the Mothers of Multiples club holiday party, then went to work where we were having a Doomsday party to celebrate the coming apocolypse according to the Mayan calendar. I changed from a holiday outfit to all black and ate all the desserts folks brought, but the world did not end so the calories did count after all.

Due to the holiday frenzy I only got to go see her on my lunch break, and to my surprise she had gone from being fussy and in pain to looking like she feels fantastic! Not only is she off oxygen and her lungs sound the best they have since she got here, but she was happy and social and has no more tubes or IV's except for her little G-tube. We had a grand time and she had another huge surprise for me. She smiled! And not the accidental "I have gas" smile. I smiled at her and she smiled back. I did it again. She did it again. I called my husband and cried. I cried writing this just now.

She is going to be just fine, and right after Christmas she is coming home for good. The doctor put the orders in for the home equipment to be taken off hold and actually be delivered, and I have an appointment Monday at 8am to learn how to use the feeding pump. This is really happening! We are rooming in Christmas Eve at the hospital to get the final training and clearance to come home, and also so we can celebrate the holiday with our little girl!

Busting a gut

So things  were progressing so well and I was making plans that little Tara may really be home for the holidays. But as usual she had a curve ball for us. I got a phone call that I just missed on my phone from the NICU on Tuesday in the late afternoon, with the doctor saying to call back because it was urgent. Not a message you want to hear. I called back and they tell me she has busted her stitches and her intestines are playing peek a boo. They covered it up with saran wrap, which makes a great occlusive sterile dressing, as well as tons of gauze and tape and stuff to hold things in place. She will have to be re-operated on to close the hole, to include general anesthesia and intubation. Again.

Fortunately Dr. Black who assisted on the first surgery was there and ready to go, and they got a new anesthesiologist on her case. I told them I would be there in 45 minutes or so and to pass along the info that she de-satted at the beginning and end of the last surgery according to Dr. Kadesky.  I quickly dropped off my son at my Mom's house and a casserole off at a new mother of twins house that I had agreed to bring dinner to for the Mother's of Multiples Club. (Google "Blend of the Bayou Casserole"...it's fabulous!)

I made it to the hospital with a half hour to spare before surgery, running inside right past the anesthesiologist who was stuffing some last minute cookies down his throat in the waiting room. They had given her fentanyl again to keep her comfortable. This time I had a long time to talk to both surgeons and relax me. Everyone was baffled. They say this can happen with older babies after surgery, but is very rare. That's my girl! It could be related to starting feeds sooner, but her bloating from ileus the first few days seems a lot more suspect. Also the steroids can soften the skin and may have contributed. When they went in they found that one side held perfectly. Textbook. The other side was a raggedy mess.

They told me this time they would put in a double row of stitches, and since the surgery wasn't as involved she should recover and get extubated quicker. Dr. Black assured me it will make it like it never happened. Not only will the scar look the same, but for reasons I don't understand incisions after surgery don't really start healing for 5-7 days so it will not disrupt the healing timeline for her and she MIGHT still be home by Christmas. I appreciated very much that the anesthesiologist called Dr. Kadesky at home to ask about the de-sat he had told me about but was not mentioned in the surgery notes. Turns out it was only a 92% desat, but it was helpful to know about and she did repeat that pattern. I very much appreciated his caution and making that phone call!



Miss Tara less swollen, off pain meds, and feeling better. Right before she tore her little tummy!

 I waited all alone in a waiting room at 8:00 at night, and the coffee machine was BROKEN! That's just cruel. It took about an hour, and all went well. As expected she came back to the room intubated, but this time it only took about 12 hours to get her extubated. I stayed the night at the hospital sleeping fitfully in the recliner next to her incubator. As of yesterday she is looking more comfortable, but not as happy as she was right before all this happened.

Thanks to my wonderful mother who kept our son overnight and my in-laws who came early the next day to help us get some extra sleep. Nonetheless today some of my hair started falling out in clumps. I didn't think I was that stressed, but apparently I am. Apparently it's not enough that I'm sprouting many grey hairs for the first time after this whole NICU experience...

With all the attention on Tara this week, I haven't taken any photos or videos of the little man. I made up for it today. He was wide awake and having a dance party on the changing table, where he LOVES to hang out. I'm not sure if it is the super cute and colorful wood mobile from my friend Karen or the way he can stretch out and flail his arms and legs around. I just pull up the rocking chair and watch. He is following people with his eyes and head and making more eye contact. He smiles more and I think I heard him laugh twice. I've started reading him books, and he seems to enjoy it. I have to say I'm alarmed at how many baby books are about animals and the noises they make. Isn't the goal to get them to make human noises?

Exceeding expectations and laughing at limitations

As usual Miss Tara had some surprises up her sleeve.

Things were really not changing and she was in significant pain and her lungs were starting to have some fluid on the X-ray, and frankly I was not going to be suprised if it took her a week to get extubated.

But Tara always likes  fly in the face of limitations, so she was extubated today and has improved dramatically since then. The more she fought and the longer she was on the ventilator the more fluid her lungs would produce due to their reactivity. Then the more sedation she would need and then that would make her need more respiratory support because of the sedation. It is a downward cycle, so they tried extubation to see how it went and she responded very well!

She is in a lot less pain and clearly much happier and resting better, so they are already weaning her off pain meds of Fentanyl and Versed too. Her intestines weren't really moving anything ("ileus" because of surgery recovery) but then today they kicked in and she had a poo and then a BIG poo after they gave her a suppository and is is tooting up a storm. The doctor calls it "passing flatus." :)

They tried 4 times yesterday to insert a PICC line into a bigger vein and failed, but the doctor called me late today to tell me they were going to start formula slowly into her Gtube rather than turn her into a human pincushion. Good thing, because if they kept trying today and failed I was going to revoke consent! She is tolerating the formula well so far, and if that continues tomorrow the Doc said she is out of danger.

She is doing so well now the possibility of her being home by Christmas could be back on the table. But either way I've been reminded is that it is family that makes a holiday and not a time or place, so we'll make the holiday magic happen somehow.

I did find out that my son is no more likely to have a malrotation than any other baby, and it is not related to prematurity.

I found a great blog of a 23 weeker preemie at www.lifewithjack.com and she wrote a beautiful piece "Don't Wish it Away" here: http://www.lifewithjack.com/2012/12/dont-wish-it-away.html  It is a MUST READ for anyone going through the NICU experience. She says what I have been thinking so much more eloquently than I could ever put it. She has been though so much more and has had to face down major fears that for me are mostly only small risk factors. I'm going to try to relax and enjoy every moment more. Cuddle more. Take more pictures. Try not to worry as much as possible. After all, it's like paying interest on a loan you  may not even owe.

How Preemie Moms are Chosen

I'm not someone who believes things always happen for a reason or that "God won't give you more than you can handle" or that there is predestination involved in picking preemie Moms. I just think sometimes bad stuff happens to good people, but with God's help we can find our own reasons. The most beautiful example I've heard of lately is at http://teenytears.blogspot.com/2011/07/welcome-to-teeny-tears.html  These amazing women have lost babies due to stillbirth and late miscarriage, and have channeled their grief into making tiny diapers so that parents may dress their tiny angels in size appropriate darling diapers and bereavement blankets.

That being said, I was moved by some of the things I read in this Erma Bombeck piece.

 

How Preemie Moms are Chosen

By Erma Bombeck


Did you ever wonder how the mothers of premature babies are chosen?

Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. 

As he observes, he instructs his angels to take notes in a giant ledger. 

"Beth Armstrong, son. Patron Saint, Matthew. 

Marjorie Forrest, daughter.Patron Saint, Celia. 

Carrie Rutledge, twins. Patron Saint ... give her Gerard. He's used to profanity. 

"Finally, he passes a name to an angel and smiles. "Give her a preemie. 

"The angel is curious. "Why this one, God? She's so happy." 

"Exactly," smiles God. 

"Could I give a premature baby a mother who knows no laughter? That would be cruel." 

"But does she have the patience?" asks the angel. 

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. 

I watched her today. She has that sense of self and independence so rare and so necessary in a mother. 

You see, the child I'm going to give her has a world of its own. 

She has to make it live in her world, and that's not going to be easy." 

"But Lord, I don't think she even believes in you." 

God smiles. "No matter, I can fix that. 
This one is perfect.She has just the right amount of selfishness. 

"The angel gasps, "Selfishness?! Is that a virtue?" 

God nods. "If she can't separate herself from the child occasionally, she will never survive. 
Yes, here is a woman whom I will bless with a child less than perfect. 

She doesn't know it yet, but she is to be envied. 

She will never take for granted a spoken word. 

She will never consider a step ordinary. 

When her child says 'mama' for the first time, she will be witness to a miracle and know it. 

I will permit her to see clearly the things I see ignorance, cruelty, prejudice and allow her to rise above them. 

She will never be alone. 

I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." 

"And what about her Patron Saint?" asks the angel, his pen poised in the air. 

God smiles. "A mirror will suffice."

A Preemie Mother's Oath

Also copied from www.lifeafterNICU.com

Preemie Mother's Oath

I have sat in the NICU and waited.
I have cried and prayed.
I have endured.

Like most things in life, the people who truly have appreciation are those who have struggled to attain their dreams.
I will notice everything about my child.
I will take time to watch my child sleep, explore and discover.
I will marvel at my surviving miracle every day for the rest of my life.

I will be happy when I wake in the middle of the night to the sound of my child, knowing that I can comfort, hold and feed him and that I am not waking to a nurse taking another temperature, an alarm going off, another round of meds or because I am crying tears for fear of the unknown.
I will be happy because my baby is alive and crying out for me.

I count myself lucky in this sense; that God has given me this insight, this special vision with which I will look upon my child that my friends will not see.

Whether I parent a preemie with physical challenges or medical issues, I will not be careless with my love.

I will be a better mother for all that I have endured. I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain.

I know disillusionment as I have been betrayed by my own body.
I have been tried by fire and hell many never face, yet given time, I stood tall.

I have prevailed.
I have succeeded.
I have won.

So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs.

I listen.

And even though I cannot make it better, I can make it less lonely. I have learned the immense power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard. I have learned a compassion that only comes with walking in those shoes.

I have learned to appreciate life.

Yes, I will be a wonderful mother.

- Author Unknown