These last 4 weeks have been busy for us! Vaughn is just about a month from his surgery and healing nicely. We have his new helmet that fits so much better and he has been wearing it full time for the past 2 weeks. His glasses have been a challenge as now that we don’t use the strap to keep them on but fit them into his helmet and he can now pull them off and use them as a teething device.

He looks pretty sophisticated with both his helmet and glasses on though! He only wears them once or twice a day when he is watching a little baby Einstein.

Asher had his first scan since wearing his helmet for 4 weeks and we have progress! I am so thankful that the helmet is working because that also means Asher is growing. The red outline (the inside circle) indicates his original scan and the blue line (the outside circle) is showing his progress. The top of the diagram below is the top of Asher's head and if you look at the picture of Asher, you can see the bottom portion of his head is becoming more round. Vaughn should have his first progress scan the beginning of January.

Asher has also graduated out of the eye care clinic! His eyes are looking healthy and he can now begin to get his eyes checked as he goes to school with the rest of the kids. He does have a slight astigmatism but the good news is the astigmatism is even in both eyes so there is no need for glasses at this time. Glasses are in his future but as for now, that is one less appointment for us.

I received a call earlier this week from our pediatrician’s nurse saying that there are no abnormalities in the genetic testing that was done when we drew Vaughn’s blood. What a relief as we do have an appointment with a genetic counselor next week. We are still going to meet with the counselor and the genetic doctor that specializes in the eyes to see if we can put a name to and or find any course of treatment for Vaughn’s eye.

So much has changed in a year….. Asher came home from the NICU on December 9^th and this will be our first Christmas as a family at home. Vaughn later followed on December 30^th and though this was the hardest and most challenging year for Jerad and I, I know we wouldn’t have changed it. It is our journey and Vaughn and Asher’s story.

With Gratitude…..

There are no words or actions that could possibly express how thankful Jerad and I are for your thoughts and prayers over our family. We are blessed and loved and are appreciative of your texts, calls and emails. God has been faithful once again to this family of four.

Vaughn has amazed his Dad and I yet again with his strong spirit. He did not cry once as we waited for his surgery time. He missed his morning nap and the last time he ate was at 4:30am and never complained once. There was a TV in the pre-op room so he was able to watch Sesame Street as we waited anxiously. Jerad and I were able to walk Vaughn into the OR and be with him while they put him under. I had Jerad carry him as I just didn’t have the physical strength to do it. I was nervous but at peace. Vaughn was able to have his pasi as he was given the anesthesia and Jerad was on his right side so as he fell asleep he was staring into his earthly father’s eyes. We were able to give him a kiss and they sent us on our way…. All I could think was, you have my son, bone of my bone and flesh of my flesh. The man that walked us back to the pre-op room was very nice and kinda jolly, reminded me of a young Santa. I was thankful for his gentle domineer as I felt very numb at that moment. Our urologist had a private waiting room for us to stay in, so we were able to leave Vaughn’s car seat and clothes in that room as we went downstairs to eat. It was nice to have a place where Jerad and I could take a moment and pull our selves together. After that moment, I felt strong again and like myself and knew that the Holy Spirit was with Vaughn and that he would be with us again very soon.

We were given a number to identify where Vaughn was during surgery, meaning if his number was highlighted in green he was still in surgery and as it turned to blue, he was in post-op. One thing Children’s does well is they call you half way through the surgery to let you know that your baby is stable and about how much longer they will be. Jerad took the call and hearing the word stable brought a sigh of relief to my lips. His surgery was about 2 hours and that is a little longer than normal as the eye doctor needed to look at his eyes before and after they were dilated. We watched a movie on our lap top to help the time pass and before we knew it Dr. Campbell was sitting in front of us saying how well he did. They were able to draw the blood for Vaughn’s genetic testing, look at his eyes and fix the hypospadius and circumcise him. He said he was very swollen and would go home with a catheter in. He is on a couple medications, one to avoid any infections and one so his bladder doesn’t spasm. He told us we could go see him in recovery as soon as his nurse came to get us and that would be in about 10 minutes! They said he was still sleeping and should be for a while before he came out of the anesthesia. Not my little Vaughn though as we rounded the corner I could hear his cry, he woke up much quicker than expected and so I was able to hold him right away. He had a very hard time coming out of the anesthesia though and that was the scariest moment for us. His eyes were dilated so he couldn’t see and I imagine that was startling for him. They gave him some drugs to calm down and help with the pain in his throat as he did have some breathing assistance. We were able to let him sleep for an hour and then have a bottle.

The eye doctor came in while we were in recovery and was able to explain what she saw. Vaughn’s left eye didn’t develop fully and so that is the reason why it is smaller. Unfortunately this means that, most likely his helmet will not help with the growth of this eye. The part of the eye that didn’t develop all the way is the front part, not the back part of the eye which is what controls his vision thought so she did say there is still some hope. We will continue to wear glasses and once the New Year rolls around probably patch his good eye for a couple of hours during the day to force him to use his left eye. There are a couple of options for him as the eye won’t fully develop until the age of 8 so we are going to keep trying as we learn more about what he has exactly. Her professional opinion was that the shape of his eye wasn’t due to his plagiocephaly (shape of his head) and could even have something to do with his genetics. They are also going to be receiving a copy of the results of the genetic testing to see if this will give them a more precise diagnosis of Vaughn’s condition. Another reason to be thankful we had this all done at one time! I am a little sad that his eye will always be smaller but anytime the word hope is used, I know in my heart that there is always a possibility and with a Heavenly Father in control, the possibilities are truly endless!

Vaughn hasn’t cried once since we have been home and has been eating great and sleeping like an angel. I am so proud of him; he is still smiling back at me and playing happily with his brother. Asher is home and anxiously awaiting for his Dad to get home from work. Each obstacle that is placed in front of us is hard but allows Jerad and I to learn to be more of a team and even more dependent on God. We have a follow up appointment next week to have the catheter removed and from there recovery should be quick. Vaughn is not wearing his helmet right now as we wait for the new one to come in and I imagine the timing is good as having to manage his pain and wear a helmet might be too much for our little guy.

Thank you to my parents for loving and caring for Asher and for coming over today to help me. Thank you Nana (Jerad’s Mom) for having dinner ready for us when we arrived home yesterday and for the gifts for Vaughn! With a grateful heart…..

                                          Vaughn right before surgery at Children's Hospital!

Covenant and Circumcision

I know, a strange title but that is where I am at…..I am in a bible study right now and the topic is covenant. My oldest son is having surgery tomorrow for a condition called hypospadias. Hypospadias is when the urethra opens on the penis instead of at the top. This isn’t a twin thing or even a preemie thing; it just happens to 1 to 3 in 1,000 boys in the US. There are three degree’s of hypospadias and Vaughn has the second degree, where the opening is along the underside of the shaft of the penis. Because the foreskin is generally used in the reconstruction, Vaughn wasn’t circumcised when he left the NICU. After the hypospadias is fixed, the doctor will then be able to circumcise him.

I trust God; I trust the Covenant making and covenant keeping God that I serve. The same God that established a covenant with Noah and Abraham and sent his Son to be the final or new covenant for us. I was having dinner with some dear friends a couple weeks ago and the topic of circumcision came up as one of the ladies has twin boys and the other has boy/girl twins so we all have little men, and the question was, why do we still circumcise? I know why we did with Asher and plan to do with Vaughn tomorrow and took the opportunity to share some of my thoughts and background on it. Circumcision is a sign of the covenant that we read about in Genesis 17. It was a cut in the flesh (closest to the site of paternity) so the descendents would remember the covenant cut with Abraham and his seed. It was a sign of obedience and of belonging. Once circumcised the man would be identified as one of God’s chosen people forever and as a symbol of purifying one’s heart and dedicating oneself to God. Now I know we live under the new covenant but for us it was a way of remembering our heritage, our background, who and where we come from. It may be an old tradition but it still has significant meaning to me and I am thankful that Abraham believed God and entered into covenant with Him thus allowing us to know and learn about where our traditions come from.

God showed his favor on us today as we spoke to nurses and assistants trying to organize the procedures for tomorrow. The eye doctor wants to look at Vaughn’s left eye while he is under anesthesia to get a better look at what is going on. I mentioned at his last appointment that he would already be having surgery on the 13^th of November and would it be possible to look then. She thought that was a great idea and would try to schedule her patients around his surgery time. I called today to follow up to make sure that this was still part of the plan and found out that she is out of town at a conference along with the other optometrists at Children’s. There is only one optometrist working tomorrow and she is already scheduled to be in surgery at the time of Vaughn’s surgery. Her assistant was very kind and told me that she would try to do everything she could to make this happen. After we hung up our PT was here so I wasn’t able to stop and pray….. I just simply said under my breath, Lord- Take care of this. She called at 4:15 today and told me to buy a lottery ticket that it was my lucky day. She was able to get both doctors on the phone so they could agree to let the eye doctor go first so she could start in our OR as the other surgery that she is scheduled for, her part is at the end of the surgery! She said that this never happens and was so happy that she was calling to say that Vaughn’s eye would be looked at tomorrow. As I mentioned previously, our pediatrician would like to do some genetic testing on Vaughn and it was Jerad’s idea to see if they could draw the blood that was needed for this testing while Vaughn was already under anesthesia. Our pedestrian’s nurse called at 4:30 today telling me the script had been signed and sent to urology asking them to draw blood on Vaughn for this testing. Thank you Father for orchestrating all of these departments and establishing your plans for Vaughn.

Vaughn goes into surgery at 11:45 tomorrow, would you pray for not only Vaughn but Jerad and I also. That we would be full of peace and that the Holy Spirit would go ahead of us and be there before, during and after his surgery. For Asher too as this will be the first time the twins have been apart. My Mom is coming to pick him up and watch him until Wednesday.  Throughout the Word of God, the word blood carries great significance…..may the Lamb of God be ever present during Vaughn’s surgery.

1 Year Check Up!

We had our 1 year check up yesterday and Asher is weighing in at 18lbs 6 ozs and Vaughn is weighing in at 14lbs 14ozs. Which for Vaughn is a pound up from his last weight check with is a true blessing as the previous weight check he had lost 3 ounces. They both continue to grow in length which is wonderful as I imagined they would be tall and thin like their Daddy. No major issues at this checkup which was different from all the previous visits, we are going to move to 3 meals a day for Asher and try to give bottles right before a nap or bedtime. As for Vaughn we are going to keep with his main nutrition as the half goat’s milk/ half formula for now as he just doesn’t enjoy eating. We are still going to try once a day to eat some solids as gestationally he should be eating more and drinking less. Vaughn has a hard time chewing and I am not sure if this is associated with his torticollis, as try to chew or eat with your head tilled to one side… it is hard. The food naturally falls to the left cheek. I gave Vaughn a small meltable puff while we were with the Pedestrian and the Dietitian to show them his difficulty and of course the first puff he ate great and so I asked my Mom to give him another and sure enough he choked on it and spit it out. I think they had a better idea of how hard it is for Vaughn (as he has to concentrate so hard) and understood why once a day was exactly where Vaughn needs to be on learning to eat. Daily development for Vaughn is a balance; he needs to try once a day but we can’t push him to hard or to fast as he has created his own timeline and is happy there. And we are happy that he is such a happy baby.

Genetics. This word was brought up yet again at our appointment….and I felt myself become instantly defensive. Thank God for my level headed husband who can talk me off the cliff faster than anyone and remind me that our Pedestrian is a specialist in preemie care. Both boys are behind in their development but Vaughn is even farther behind Asher. We have discussed doing some genetic testing for Vaughn with several doctors in different fields of medicine because his left eye is smaller than the right and his left ear is back farther and grows ever so slightly down. The reason though that we haven’t is because it really is a mystery to them because the boys are identical twins and so they share the exact same DNA and Asher doesn’t share the same issues. If they weren’t identical twins we would have began this journey already but Jerad and I truly believe that these issues all stem from his acid reflux and sleeping for so many months sitting up in his bouncer, resulting in the placement of his head. No real mystery here, just miracles. Vaughn is special, I know this and I bet you do too. Just one more quality about him that makes him unique, which proves he was created in God’s image. Now that he is technically a year of age we should start looking into his genetics and the testing isn’t too invasive. They would draw some blood and look to see if he has extra chromosomes or is missing some. Sometimes the test tells something and sometimes it doesn’t so we are in no hurry to know some information that we can’t do anything about or it may help us understand his delay. All I know is we are taking one obstacle at a time and once we get comfortable in helmets and have Vaughn's surgery, then we can focus on the next step. Vaughn is having an outpatient surgery next Tuesday though and we are going to ask, that while he is under, if they could draw the blood then so we don’t have to put him in any extra pain. Either way some genetic testing is in our future for our little hero. I am completely in love with these 2 little men and so proud to be given the opportunity to raise them. They are tough and strong and I know that God’s plans for them are big as this growing up stage is hard work. I pray we are doing a good job of instilling in them the characteristics of hard work and that at the end of the day, hard work pays off. From weaning off oxygen to wearing helmets it is all for the Glory of God.

Day 5 is Daylight Savings…..

Daylight Savings and babies, not a good mix. Today is Election Day and I say we put daylight savings to a vote because anyone with small children would vote against. It is so hard to keep them on schedule and in helmets is even more challenging! Day 5 was Sunday and it went great for Asher. He was already pretty much in his 23 hours so I feel good about his progress. His naps are not as long as normal but I honestly can’t tell if this is because of the helmet, daylight savings and or both.

Vaughn is on his own schedule which falls right in line with his adorable life! Because his head has such a unique shape to it, like putting an oval in a round helmet, we knew getting the right fit would be challenging. So he only took taps in his helmet and not for bed time. We did have him wear it all day though and only took it off for an hour during the day for his bath. His helmet just isn’t a tight enough fit so it moves around on him and it is hard enough to ask him to sleep in a helmet but not fair to ask him to sleep in a helmet that doesn’t fit.

On Monday Jerad and I took the boys back to Children’s for another fitting. The only thing we needed to do was have some material added to Asher’s on the cheek pieces of his helmet so the foam wasn’t rubbing on his cheeks.

For Vaughn’s fitting, they took out the added piece in the back where we originally thought it would help make the helmet a tighter fit and shaved more off the top of his helmet so his glasses didn’t bump against it. After we made another round of adjustments though, Greg decided that we might have been too aggressive with Vaughn’s helmet and need to re-scan him and order a new helmet. Jerad took him back to get scanned and he was rock star as they were able to capture the scan the first time, Jerad said he was even smiling in the picture! So we await a new helmet for Vaughn…. He is still wearing his old helmet during the day and at naps so we don’t loose any time until the new one arrives. Time is important factor right now as typically a child’s head does the most rapid growth in the first year so we really only have until the end of December for the best growth but because the boys are small for their gestational age, we think we will still see progress even into 2013. The estimated time for Asher to wear his helmet is 3-4 months and Vaughn 4-5 months and of course this all depends on how much they grow. Pray that the boys grow! We have a weight check later today with Grammie so we are headed back to Children’s for the boys 1 year check up.

Day 4…. And half way there….

Day 4 is 8 hours on and 1 hour off. I gave them a break after 4 hours and then put them back in them. Asher’s helmet is fitting great and we aren’t seeing any red spots and he is tolerating his helmet well. He wore his helmet all evening and slept in it last night!

We are still having a hard time with Vaughn’s helmet though, they added a piece in the back of his helmet to help it fit better and it has pushed the placement of the helmet forward and now the cheek pieces are rubbing on his ears. He wore his helmet until his 10:30pm feed and woke up crying so we took it off as they never wake up crying. There is a small red spot on the back of his head so we are monitoring it closely. Vaughn won’t sleep in his helmet until after our Monday appointment when it can be adjusted again but he is going to be wearing it while he is awake. So we are half way there, one twin is wearing his helmet 23 hours a day.

Day 2 and Day 3

Day 2

Today we were to wear the helmets 2 hours on and 1 hour off. After the first couple of hours I noticed that Asher had a red spot on the right side of his head, just above the ear and the cheek piece on Vaughn’s helmet was pushing in too far. So we made an afternoon appointment at Children’s to get that fixed before the weekend. We called Grandpa to come help and off we went. I am super thankful we went in as the red spot on Asher’s head was about to turn into a blister. He didn’t wear his helmet the rest of the day. They made some adjustments to Vaughn’s helmet also, they actually added a piece in the back to fill in the gap where his head doesn’t fill out the helmet as much in hopes to make the fit a little more tight. We also needed some more room for his glasses. We put the helmet back on him and we headed home to finish out the day. I would say they did a good job of showing patience as the helmets were taken on and off to get the fit just right and I was able to watch how Greg placed them on each time.

Day 3

4 hours on and 1 hour off…. Not exactly. I had bible study today and didn’t want the ladies who watch the boys to have to deal with the helmets just yet, so we were a little short in hours for the morning shift but overall they did pretty well with wearing their helmets. I am still struggling to get them on and off, thank goodness they won’t remember any of this. Dad gave baths when he got home and I gave the helmets a good scrub. Each time the helmet comes off; I clean them with rubbing alcohol and wipe their heads off with a cool wash cloth. Their bodies are already adapting to the heat of the helmets as the sweat wasn’t as bad today even after wearing them for 4 hours straight. The twins enjoyed a little extra tv time today as we all get use to the weight of the helmets.

Day 1

Today was our first day wearing the helmets. They wore them for an hour and then took them off for an hour. No naps in the helmets just yet…. We did wear them home from Grandpa and Grammies and they did great in their car seats. I am thankful we started this fashion statement in the fall as the helmets make their little heads really sweaty, which is common as they get use to wearing them. I have to say that this experience has got to be harder on us then them. We are not very good (yet) at getting the helmets on and off and would advise anyone who might be walking this journey one day after us to practice before you leave the office. They advise you to watch for any red marks (that don’t disappear after a half hour) after you take the helmet off. If this is happening, we need to get in for an adjustment and after today I did notice that there are some marks where Vaughn wears his glasses. Our next follow up appointment is on Monday so we are only going to wear the glasses and the helmet while he is eating. Here are a couple pictures of the boys’ heads so you can see why we are wearing the helmets!

 When the rehab doctor was measuring the boys’ heads to see if they would be candidates for helmets, she said that 10 is a low need, 15 is borderline and what most insurance companies want to see if they are going to approve the cost. 20 is severe. Vaughn was measured at a 22 and Asher a 14. We are extremely blessed to say that our insurance has approved the cost for both helmets for the boys. After the boys had their initial scans we did find out that they were not as bad as originally documented. Vaughn was measuring at a 17 and Asher a 10. Jerad and I decided to still move forward with a helmet for Asher so later in life, there wouldn’t be any safety concerns.

In addition our Vaughn also has torticollis. Torticollis is described as a twisted neck in which the head is tipped to one side. We think that the shape of his head is the reason his left eye is smaller and his left ear grows back instead of up. The doctors can’t guarantee that the helmet will correct this but we are all hopeful. There are a couple of reasons a baby can get torticollis and it is typical in twins as on occasion because it is crowed in the womb, one twin’s neck is pushed to the side. Because Vaughn and Asher were so small this is most likely not the case and because when Vaughn was born, we didn’t see a size discrepancy in his eyes or the obvious neck tilt. Another theory is that when a baby has severe acid reflux they tend to angle their head up and to the side to help try to keep the reflux from coming up. Both boys had horrible acid reflux and our assumption is this is what caused the torticollis. Asher did show signs of torticollis but managed to grow out of it. We believe it was because the boys were (are) getting regular adjustments from our chiropractor, Dr. Ryan that Asher was able to move midline. So our adventure continues on as we seek the ever desired round head.  

Take the helmet of salvation…….

Ephesians 6:17 tells us about the armor of God, specifically the helmet of salvation and as Jerad and I begin the process of acclimating the boys to helmets, I have never taken this scripture more literately. We picked up the boys helmets yesterday and had them fitted and it wasn’t an enjoyable experience as the orthotics team would put them on them and make marks as to where they needed to shave some here and there. Vaughn’s helmet was more challenging as we are trying to fit his helmet to also wear glasses. The boys wore the helmet for an hour last night. There is a learning curve to getting the helmets on and off so I am praying that we will learn how to maneuver the helmets quickly. I am staring at these camo looking hats as I type thinking I will not let these pieces of armor intimidate me. The boys do not like them and the only way they wore them yesterday for a short time was because we let them watch baby Einstein. Me being me, we gave them baths before we put them in them for the first time so they could be clean and so I just put them in their pajamas for the night. That was a little too much heat for the first wear! Asher was so hot and his little cheeks were bright red. So we are already learning….we were given a schedule as how long to wear the helmets each day to get them into wearing them for 23 hours a day. Today is officially day 1 and yet, I think it will really start tomorrow as the boys are going to Grandma and Grandpa’s tonight. We have to move slowly with our boys but we can’t take too long getting into them as we are approaching their corrected first year and that is when the head doesn’t allow as much shaping.

I am nervous to begin this journey as it is going to be tough on everyone. They have to learn to eat, sleep, and do everything in these helmets. In my prayers asking for God’s favor as we do what we know is best for the twins, He reminded me of His armor. The boys already are not good eaters and to add another element to feeding time is scary. The one thing the boys are good at is sleeping and it hurts my heart knowing we have to ask them to sleep in the helmets. As parents one of my ongoing prayers is to pray the armor over them, and so I am going to use the helmets as a reminder to pray for Vaughn and Asher‘s salvation. What an honor it is to pray over their minds and speak scripture to them, these helmets will be a constant visual of the authority He has given us! Would you pray alongside us that this transition would be smooth and that the helmets would re-shape their heads quickly?!

Ephesians 6:10-18

“Finally be strong in the Lord and in his might power. Put on the full armor of God so that you can take your stand against the devil’s schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground and after you have done everything to stand. Stand firm then with the belt of truth buckled around your waist, with the breastplate of righteousness in place and with your feet fitted with the readiness that comes from the gospel of peace. In addition to all this take up the shield of faith, which you can extinguish all the flaming arrows of the evil one. Take the helmet of salvation and the sword of the Spirit, which is the world of God. And pray in the Spirit on all occasions with all kinds of prayer and requests. With this in mind, be alert and always keep on praying for the saints.”

Road Trip

I received a call from Children’s today saying the x-ray’s that we had done on the boys are normal! Yippee and Woo Hoo! Our rehab doctor wanted their hips checked out and there was some concern that Vaughn might have early signs of scoliosis but once again God has been faithful and all looks well!

Asher and Vaughn are going on their 1^st road trip this weekend and we are very excited! We are going to Wray and Holyoke to visit some friends and family. When we found out that the boys were small at our 20 week ultra sound and I started sending out weekly updates, my friend Mandy started sending them along to her mother in law. She then shared our story with her church and they prayed faithfully for our family through the pregnancy and while the boys were in the NICU. Well it is our pleasure to attend this church this weekend and personally thank our extended family for their prayers, love and support. We are then off to see the Phipps and have a sleep over with Sawyer! I am not sure what to expect being away from home for 2 nights in a row but we are ready for another new adventure! Turning one has been awesome!!