Monday, July 6, 2009

2 Months

The family hanging out on the boys first 4th of July.


Alex wide awake100_0425

Alex falling asleep and cuddling with Daddy!


Nicholas snoozing with Mommy


Nicholas in the 4th of July hat Daddy insisted they wear :P


Alex couldn’t escape having to wear his either but he slept through it…



Nicholas woke up and seriously questioned Daddy’s judgment :)


We can not believe the boys are already two months old. In some ways it feels like just yesterday everything happened and in other ways, well it feels like a lifetime..

The boys have had a pretty good week overall but there are always those dips in the road. Nicholas is doing wonderful and will be finishing his course of antibiotics tomorrow from his Staph infection. They DID finally get a line in him last week without having to cut into him (huge sigh of relief) but the line unfortunately already had to come out. His body just doesn't like these lines and the spot gets red and puffy and they can't risk leaving it in in case of again...infection. He's acting like himself so I don't really think he has an infection but I do understand why the docs have to be so careful, we've already witnessed how quickly they can get sick so I'm fine erring on the side of caution. We are holding our breath to see if they will have to try to get another line in this week or if he could maybe go without and just have the regular IV in. The decision involves how much he is tolerating in his tube feedings versus how much he needs for IV nutrition. The more IV nutrition he needs, the more likely they'll have to do another PSC line. The good news is right now he is up to 7cc per hour on his feeds, which is almost half or his overall nutrition needs for the day. We've never gotten this far before so we are just crossing our fingers that he continues to tolerate this and we can keep going. He is a whopping four pounds, 6 ounces according to yesterdays weigh in, that might have been knocked back a bit after his equally whopping diaper, (yeah really it doesn't take much to alter the scales at this point) but we are thrilled regardless!

Alex will hopefully be turning the corner as well this week. He has been on and off again with his tube feedings. They are still concerned about his belly. Over the weekend his belly became distended again and he was even having more trouble with his oxygen levels. He turned blue in daddy's arms and that hasn't happened in a very long time so we knew something wasn't right. They checked his belly and found old blood and bile so the feeds were suspended again, cultures were gotten, and antibiotics started again in case of infection. His blood work was also off but they reassured us it could be just that he had just received several of his immunizations. He is acting more like himself again so we are hopeful that it was just a false alarm. They continue to look at his belly through xrays and if the next one this morning looks okay, they will re-start feedings. What pulls at my heartstrings is that he's actually acting hungry. He can't get enough of his binky, will even settle for my finger at times and if either falls out, he goes crazy in search of it. Its the sweetest and yet most heartbreaking thing to watch because I know when we are not there, no one can sit there and hold the paci for him and he's not strong enough yet to hold it in too long for himself. I'm praying tests will be all clear for him and they can start feeding him today! He's a little behind his brother right now and is at three pounds, 15 ounces. But I know when given the chance, he will catch up in no time.

Other BIG news was that Alex did not have a dislocated hip afterall. Actually the MRI showed that he had a fracture at the top of his femur bone. We were upset and puzzled by this wondering how he could have had a fracture. I met with the ortho doctor who explained the placement of the fracture is not consistent with any type of trauma, it was likely "congenital" happening in utero or during birth. The good news is that it has already healed and during his exam, Alex showed absolutely no distress, discomfort or pain. He said absolutely no treatment is necessary, and the way it has healed will not impede his function in the future. He said these little babies bodies are amazing, and I agree. Oh, and one more thing....while the ortho doc was there, he did a full assessment on Alex. He stated that given his muscle tone, he is actually displaying potential abilities closer to that of someone who has an L4 defect, not as high up as his actual defect which is L1. I asked him in plain English what did that mean. I will never forget his exact response and facial expression: "well, Mrs. Rissberger, most L4 children walk." I was stunned. I'm not sure how many times I asked him to repeat that sentiment in varying ways to make certain I wasn't misunderstanding. He might have left worrying about my intellect but I don't care.

Its hard for me to imagine that he can give us such optimistic news with Alex being so little still but he stated that he feels pretty confident that with a lot of therapy, and patience, Alex will get there. We are beyond words at this point. Neither Mark nor I want to be unrealistic or have expectations of our son that he could not possibly reach even with his best efforts. We have made peace much earlier in the pregnancy with the fact that Alex may never walk, that was not the most important factor to us. All we want is for Alex to have a full life and to be happy-- whether he does that from standing on his own two feet or from a fancy schmancy chair with wheels that we paint racing stripes on, (or whatever he wants on there that will make him smile). But the thought that maybe he will be able to stand at some point, transfer himself from place to place perhaps, walk even a couple of feet if he wants and then use the wheelchair for distances....well this would open up doors for him and simply fills our hearts with hope and joy.

I admit fully in having my faith tested at times while we have been on this journey, watching my babies struggle with every breath and fighting for life. In my heart, I know He is watching over them, and us. We have been praying a very long time for a family of our own and wondered why it didn't come easier, where was God? Then we got pregnant at last, and with TWINS and we thought this is what we've been waiting so long for, we couldn't have believed we had been so blessed. Ofcourse most of you know the rest of the story.... We learned about Alex's spina bifida during pregnancy and had our faith tested yet again. We worried so much how life would be for him, and how we would be as his parents. Then I grieved as the pregnancy had to come to such an abrupt ending and wondered how life could be so unfair, to our sons, to us. We have repeatedly questioned the doctors, ourselves, what was so flawed, what were the reasons that the boys couldn't be sustained in the womb. I felt like my body had failed them and yes, I wondered where was God in all of this. Now (again) I wonder and reflect and know that He was there, He is still here. Perhaps He knew that even though the boys would need to struggle coming so early, but it was the better chance for Alex to be born and to have his closure surgery before getting too big. (That is exactly the research going on right now, surgery in utero for babies with spina bifida but we were exempt because of having twins). Alex basically got to have this same treatment, just had to be delivered with his brother to do it. We'll never know if he would have had the same outcome if he had been born later, but either way I DO know that God is watching out for them.

Both of my sons have overcome so much just to be here. They keep fighting and surmounting all the obstacles in their way. Their strength and resilience humbles me and I am so honored that I was chosen to be their mom!

I will leave with a poem that someone forwarded to me and I was deeply touched by it, I'd love to think it was even a little true.

How Preemie Moms Are Chosen(Adapted from 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."


Connie said...

Wow, Holli, they are beautiful, this post you wrote is beautiful, and Erma Bombeck’s passage, just beautiful as well!! As you can tell, I’m at a loss for better words, so beautiful will have to suffice. Every picture and post brings tears to my eyes, but this one in particular, about Alex possibly walking, just brought the tears flowing. Like you, I know I will love him no matter what, and it doesn’t matter if he can walk or not, as you say much more eloquently. What is important is his happiness. Yet, reading about this possibility still brings the tears (of joy)! Love you all and can’t wait to see you!! I think the dates we are coming are 7/26—8/2, but not absolutely positive—Alan can confirm.

Connie said...

Oh, forgot to add: That picture of "Alex wide awake" is all Mark!

Anonymous said...

What a wonderful mother you are. I am so thankful the boys are doing better and have overcome some of the hurdles that were put before them. How could they not, with all the prayers that are being said in their names. We love you guys and continue to pray for strength for all of you.
Love Aunt Marilyn

Missy said...

Hi there- I stumbled on your blog through Matt Linden's SB Resource Guide blog...just had to say hello! We have twin boys also, Owen and Luke, and Luke has spina bifida (L4-5). They were born 5/9/03 at 36.5 weeks. We found out about the SB (they spotted the hydrocephalus in an ultrasound) at the 26 week mark of my pregnancy. That was a long 10 weeks, for sure, but we didn't have the preemie issue to deal with so much. Although Owen wasn't exactly ready to come out and we had two weeks of lung issues with him. He was sprung from the NICU just two days before his brother (who had two major surgeries!)

As your doctor indicated about L4 kids, Luke does indeed walk...walks, runs (not the fastest, but he's definitely running) climbs, swims, big wheels like a mad man, and he's learning to jump and ride a two wheeler. We have our issues, but he's remarkably "normal" and people are frequently surprised to learn he is a SB kid.

I hope you will feel free to reach out if you want to compare notes or ask questions about how things worked for us, I know there are a lot of SB parents out there willing to be sounding boards and help in whatever way they can, but I've only found one other set of twins with one SB case. So please email if you'd like! Sending prayer and good thoughts your way--both for you and your husband, and those two darling little men.
Missy (

Anonymous said...

That poem made me cry, I always have felt like this is the ultimate compliment for God to bless us with our son, who has SB. I am 28 weeks pregnant now and am just dying to meet my baby! Thank you for the encouraging words. Stay strong and keep your faith :) God bless!

Matt Wilber said...

Mark and Holli, it is a joy to of miracle after miracle in the lives of your boys, and in both of you. It continues to bring me to my knees for you all. May the Lord continue to bless you and keep you.