Quick update

Caroline "Carly" and Blake are TEN MONTHS old {seven adjusted} today! I cannot believe how quickly the time has flown by; we have been home for five months! They are now 15 lbs, 3 oz and 14 lbs, 13.5 oz!! I sincerely apologize for not being better about my blog; however, most of you are friends with me on facebook, follow me on twitter and/or instagram, and have been keeping up with the girls regularly. 

Greg had a successful kidney transplant on July 15th {we are so thankful to his sister for being the donor}!!! He's had complications within the last few months, but thankfully, none seem to be kidney related and the doctors are working hard to have him feeling 100% again. I remember having nightmares that he would have severe complications and, perhaps, would not make it. Although, he did have a major complication hours after surgery, he is doing better and was not effected by it at all.

The girls have therapy three times a week: they go to speech on Monday, and physical therapy on Wednesday and Friday. I, honestly, don't know where they'd be {developmentally} without it. Speech has helped them eat [full jars of] baby food with a spoon, and to sip small amounts of liquid out of a cup. Currently, they are working with textures in food but aren't liking it too much. Physical therapy has helped Blake to sit, unassisted, for extended periods of time; Carly is almost there but not quite. They are also able to: roll from one side to another, roll onto their stomachs and over to their back, grab for objects with both hands, and are learning how to transition from a sitting to crawling position. Carly's shunt has not, yet, slowed her development but she is just now starting show signs of her IVH (interventricular hemorrhage): the left side of her body (most especially her left arm) is much weaker and much less preferred than her right arm {Side note: children should not develop a "dominate hand" until 3 years of age; both sides of the brain should develop at the same rate, thus, no dominance should be determined until he/she is a toddler}. Furthermore, a preference for one side of the body, at this age, may suggest that she suffered small amounts of right-side brain damage that is effecting the left side of her body. Only time will tell how prevalent the damage is. 

I am truly amazed at how much has happened in the last five {ten} months; our family has been through so much {and the struggles aren't over}, but we have persevered and will continue to do so; I am so proud to be Greg's wife and the girls' mother... It has been a joy to watch the girls grow and learn. I cannot wait to see what the next five months bring {Carly and Blake will be 15 months, adjusted to a year !!!}. 

Thank you for continuing to follow our story! We are, still, so grateful your the help, prayers, and well wishes. God has been so good to our little family.  

PS: Trust me when I say, "I feel like I never have time to sit down and write" {for whatever reason, I couldn't sleep tonight so I took the opportunity to blog}. The girls are still napping twice a day, but I am usually: cleaning, doing laundry and/or dishes, or taking a nap myself during those times. When I do get a free moment to do something, I don't always feel particularly inspired to write, and I am not going to write if I don't feel like it-- nothing worthwhile can come from that. So, with all of the aforementioned excuses in mind, I will do my best to update on a more frequent basis; I've already got one, additional post, outlined for future publishing. 

We're home!

WE ARE HOME!!

November 4, 2012- April 17, 2013: 5 months, 2 weeks {166 days}
November 28, 2012- April 17, 2013: 4 months, 3 weeks {142 days} 

Angela (our surrogate) was admitted on Nov. 4 and I went to live with her, in the hospital; 24 days later, Caroline & Savannah Blake, were born. They were 28 weeks gestation and weighed 2 lbs, 5 oz & 1 lb, 11 oz, respectively. At 7 days of life, Caroline was diagnosed with a grade 3 brain hemorrhage. After two brain surgeries, she is developing along side her sister and is doing amazing. After struggling with eating, both girls received g-tubes (feeding tubes) on April 5th. 

We live in Dayton, Ohio & the girls were born in Pittsburgh, Pennsylvania-- my husband, Greg, worked while I stayed with our girls in the nicu. On January 7th, they were transferred "closer to home" in Columbus, Ohio, about an hour from Dayton. Greg visited me and our girls on Fridays (after work) & Sundays. 

On January 8th, Greg was diagnosed with end-stage kidney failure. He goes to dialysis 3x a week for 5 hours at a time. Last week, we learned that he has a blood disorder which prohibits him from continuing hemo (blood)-dyalysis. On May 2nd, he will have surgery for a home-dialysis catheter to be placed. The home dialysis will require him to stay connected to the machine anywhere from 9-12 hrs. Unfortunately, while connected, he is unable to move around. He will most likely complete his dialysis while he sleeps but since he works first shift (6:30-3:30), he may have to start his treatment as early as 4:30 pm, everyday. *he hopes to find out more at tomorrow's dialysis*

We have been to 4 different NICUs, 3 different hospitals, and 7 different hospital rooms. But, that's all behind us now; our girls are healthy, happy, and awe-inspiring. We are home & can finally be together as a family!!! 

To say that the last five months have been life changing is an understatement. I have learned that there is more to life than myself: as parents, it's our responsibility to teach the world to our kids. I was born to be a mother & a wife; it's all I've ever wanted to do. I've been blessed with the most amazing family anyone could pray/wish/hope for. The past five months have deepened my marriage, strengthened my faith, brought me closer to friends & family, and awakened a sense of purpose in my life.

G-tube kiddos

Caroline & Blake had g-tubes placed last Friday. If you haven't already, please read, momma's rant, which explains the trouble our girls have with eating. Because of these issues, everyone felt g-tubes were necessary. 

Outsiders, & [maybe] other NICU parents, are unclear about what a g-tube is and how it works. A g-tube (gastronomy tube) is a flexible tube that is surgically inserted through the abdomen and delivers nutrition directly into the stomach.

I understand family & friends being uncertain about visiting the girls because of their g-tubes. It's important to know that our girls are not sick. The g-tubes were placed because of a developmental, not medical, problem. Once discharged, our girls will require no medical attention aside from regularly scheduled pediatric/neurology appointments & developmental clinics. Nevertheless, we will never ask anyone without proper training to operate the pump, or do anything associated with the girls' g-tubes and/or their feeding. 

When our girls are home, and settled, we are more than happy to have visitors! Please don't hesitate to tell us if the g-tubes make you uncomfortable; it's easy to schedule visiting hours when the girls are not eating. During those times (which is most of the day), the g-tube lies against their skin, inside the onesie, and out of the way.

Momma's rant

Our children cannot drink a bottle. period. end of story. 

>> please STOP suggesting that, "maybe they're just not hungry enough." 

I realize you're only trying to help & really don't know what to say. However, it'd be better if you said nothing at all, or "I am really sorry, that must be frustrating."

First of all, the girls are in a hospital; I assure you the doctors have calculated the correct amount of milk they should be drinking. There is a formula, based on their weight, height, growth patterns, etc... that allows them to feel full during their feeds and hungry 3 hrs later. 

Secondly, the girls are hungry at their care-times. They root around: sucking hands, blankets, arms, anything they can get their mouth on... they are eager for their pacifiers and even the bottle (in the beginning). 

A [healthy] full-term newborn is expected to eat minutes hours after he/she is born. Therefore, the suck, swallow, breathe sequence is an instinctive response. However, preemies (especially sick ones) are not given a bottle until much later in life. Our girls were born at 28 weeks; a bottle was not introduced until Blake was nearly 8 weeks old (36 weeks gestation) & Carly was 10 weeks old (38 weeks gestation). Everything pertaining to eating has been taught to them. Their suck, swallow, breathe patterns are not instinctual. Furthermore, the very nature of their birth is that they were premature, and thus, their bodies are underdeveloped [immature]. 

In addition to her prematurity, Caroline had a grade-3 brain bleed [and is doing exceedingly well]. She sleeps nearly 18 hrs a day. She needs the rest so her brain continues to develop appropriately. Because of this, she sleeps through some most of her cares. The nurses will not wake her to eat. She is on cue-based feeds only-- she will only be given a bottle if she is alert & showing interest. When she is given a bottle, she can drink 5-15 (out of 65) mls before she's exhausted. 

Blake 1 lb, 11 oz at birth; everything about her is small & immature. She has yet to develop the ability to swallow at the same rate as she sucks. This results in her choking, coughing, and drowning in milk. She does not have the coordination to combine the 3 tasks (suck, swallow, breathe). 

Lastly, the girls are now 47 [gestational] weeks old. At this age, they should (I know "every kid is different" -- do not get on me about this!) understand how to eat. We have tried everything we can think of: different nipples, different positions, different people, monomatry studies, reflux studies, formula only, milk only, less amount & more calories, feeding at different times, swaddled, and unswaddled. Occupational therapy follows them, physical therapy follows them, the feeding team follows them; the nurses, doctors, and nurse practioners are all aware of the problem..! 

We have hit a brick wall and have [unfortunately] started regressing. The girls are beginning to refuse the bottles before we can get them to their mouths & we are doing everything we can to avoid oral aversions. 

So, please, think before you speak... things aren't always as simple as they seem.

Final thoughts

The positive response I am receiving from my late night ramblings is overwhelming. Everything I wrote is true, and I am not apologizing or recanting anything. However, I realize that I left many [important] things unsaid. 

First, and most incredibly, I am the mom I've always dreamed of being. It is truly the most unbelievable feeling in the world. Last night's post had a lot of depressed undertones. Be assured, I am not depressed. I have been depressed before, but I am not now. Despite everything that has transpired, I am the happiest I've ever been; my heart is filled with joy. I know there will be a day when we're discharged. I trust Greg's transplant will be successful, and I know we will be together as a family someday soon. The Bible is right (yet again), Love, never fails. It is the only emotion that has carried me through.

I also failed to mention how empowered I feel because of this experience. I have developed a sense of pride that was previously unknown to me. Before the girls were born, I was miserable. I did everything to keep everyone else happy. But now, I simply do not have the time (or energy) to sit and worry about offending someone else. That's not to say my heart has hardened. Instead, I have found an inner strength; a voice that urges me to stand up for what is right. Much to the chagrin of the neurosurgeon, I insisted Caroline's surgery be moved, from Thursday, to Friday (unless it was a true medical emergency). I was not willing to be apart: with Greg in dialysis and Caroline in surgery. Voicing my opinion was something I would not have done before; I would have quietly accepted that he was going to miss her surgery and then never forgiven myself for not speaking up.  

In my wallowing, I never intend to take away, or lessen, anyone else's suffering. No one's pain is less than mine; it's simply different. Many others feel the same emotions, but in a various other ways. There are countless people, with illnesses, who are seemingly overshadowed and forgotten because they suffer silently, or alone. However, my decision to journal does not make my pain any more "real" than those who do not. 

Lastly, I did not mention how thankful I am for Greg. I will spare the sappy, "I'm so in love with him" nonsense ('cuz we all know it's true)... But, he carries the same burdens with him. I often forget that he goes to work everyday (yuck!). After work, he comes home to an empty house, then drives himself to dialysis where he sits for 4-5 hrs, surrounded by elderly, sick people. It is a joyless place. He does it without complaint and self-pity. He focuses on the future and does not let the present struggles drag him down. His faith is unchanged and unshaken. He is an amazing father and husband. He is my inspiration. 

I wish I could explain...

I've strongly debated writing about my experience in the nicu. Part of me thinks, "I should- just for my own benefit." Part of me thinks, "I experience it everyday, no need to relive it when I'm not there." And, still, part of me thinks, "maybe I should- for those who have no idea what it's like." Spending an average of 8-10 hours [daily] in the nicu is not a relatable experience, unless you've done it. So, for all of the aforementioned reasons, even not wanting to do write about it, I will freely write whatever comes to my mind... no exceptions, no apologies; just raw emotion and an uncensored thought process. 

The roller coaster [btw, I detest this description] of emotions from excitement to fear, is draining. The constant noise is nauseating. It's easy for outsiders and visitors to go on with life, thinking of us every now and then. But, the nicu has become my life. I am annoyed by people telling me how to control my emotions, I am annoyed by the constant questions, the expectations, the advice, and the suggestions, "If I was you..." 
I am tired of being tired.

I lie awake at night, because no sleep is better than the nightmares: the nurses can't bring Caroline out of a brady/desat, Greg clotted again and is in critical condition, or his transplant failed and I am left with two girls to raise on my own. I do my best to ignore these thoughts during the day but my subconscience haunts me at night. I hear alarms in my sleep, I wake up drenched in sweat and worried. Yet, I get up every morning and drag myself to the nicu; exhausted or not. I wait for the doctors to round on the girls, never expecting much change: "Caroline's still doing well on room air but Blake can't seem to get off the .1L of oxygen" or "Blake took 7 ccs for me, but that's okay because she's still little, it will click for her one day." 

I am proud of her for those 7 ccs, and I want to have patience and faith that she will get it. But, something inside me wishes Blake would understand 'suck, swallow, breathe' sooner than later. I wish Caroline wasn't so developmentally behind her sister, and that they weren't, both, developmentally behind other kids their gestational age. I pray their lives won't be severely impacted by their prematurity. I try to block out the doctors' warnings about Caroline's future cognitive and physical development. But, at night, I cry and pray she won't have any disabilities. I beg God to give her the ability to walk, to see, to play, and to experience life to the fullest. Anger overwhelms me and I question God, "Why did her brain hemorrhage? What's the purpose in all this?" More than anger though, is sadness. I am sad that Greg cannot visit, I am sad we are fighting the same [emotional] battle separately, I am sad he can't know what I am experiencing (no matter how much I try to explain), I am sad he's sick and without me, I am sad he has dialysis 3x a week for 4 hrs, and I am sad we cannot be together as a family.

The guilt I feel is unfathomable. As Greg's wife, I should be with him. Yet, as the girls' mother, I should be with them. I am constantly torn between spending time with our girls and being with him. When I am in the nicu, I think about him. When I am with him, I think about our girls. I worry that I didn't spend enough time holding them; even if they're held 4 hours a day, there's still 20 hrs that they weren't held. Or, when I need to get away, for a few hours, I worry if the nurses wonder why I am not there to care for the girls. And when I have a 'fun weekend' going home to watch the Superbowl, I feel guilty that the girls are laying in their cribs, alone, in a loud, obnoxious environment. I can't even take a walk through the park without feeling that Greg & the girls should be with me. 

Oh, and I can't forget the jealousy. I am jealous about everything imaginable: parents of healthy babies, parents of babies being discharged, parents of full-term babies, parents who will never experience the nicu, parents whose children are not developmentally delayed, parents who are together in the nicu... yeh, there's a lot of jealousy. 

Many studies suggest that long-term nicu parents suffer from PTSD (post traumatic stress syndrome). I am not suggesting that 1) I can be considered a long-term nicu parent [just yet], or 2) I have been diagnosed with PTSD. However, I am suggesting that spending 130+ days in a hospital setting, 105+ of which are spent in the nicu, changes a person's psyche. Moreover, I believe the girls' stay is almost over (relatively speaking). I want to be calm and excited about their continued growth, while simultaneously, I am reliving a lot of the emotions I did not allow of myself earlier. Therefore, I am having frequent nightmares, night sweats, and anxiety attacks. 

I am always thankful. I would relive the pain, the nightmares, the sadness, and the guilt, one hundred times over to be with our girls. We have suffered, prayed, and sacrificed for these girls. They are true miracles from God. They have a plethora of guardian angels who held & loved their souls before they were conceived [I strongly believe this]. Caroline's neurosurgeon (for her VP shunt) wrote his initials "RG" on her skull before surgery. It was as if her late great grandma, Ruth G,* was reassuring us she would be with Caroline during surgery. Furthermore, we have 100+ people (family, friends, co-workers) praying for our family and sending love through facebook, twitter, and instagram. People cook dinner for us, feed our animals, clean our home, buy us gas cards, send care packages, etc... for this I am so grateful. I am thankful for Angela. She continues to support the girls by providing breast milk, knitting outfits and blankets, and makes me laugh with funny texts. She has become a wonderful friend and I cannot wait for the girls to meet her. 

I am not really sure how to end this. I am not sure if it even makes sense; and I don't care. I did not write it to for anyone's 'viewing pleasure.' These are my thoughts, my feelings, my internal struggles, and I had to express them in the only way I knew how: by writing them down. 

*I have excluded Ruth's last name for privacy reasons.