Need to Update

I will update when there is time. For now, here are some pics. We hope that you had a Merry Christmas and that you will have a Happy New Year!

Happy Thanksgiving

Happy Thanksgiving. We had a wonderful Thanksgiving at my parent's house. Cory's parents joined in on the celebration. We are very thankful to God for what He has brought us through this year. Recently, I have been reflecting on the past year. There have been some monumental moments that we will never forget. Some of them are: being told "There are two babies" by the ultrasonographer, finding out that we were having identical boys, hearing over the phone that we should terminate our pregnancy with Aaron, going to Houston and then being told we could not terminate the pregnancy even if we had wanted to, the pregnancy making it to 28 weeks, hearing James at delivery, hearing in the OR that Aaron weighed 710 grams and not under 500 grams (there was a huge gasp of relief by the 14 people attending the delivery), calling Cory to tell him to come to the hospital because Aaron probably wouldn't make it through the night, crying at Aaron's bedside and telling him that he could go-that he did not have to fight anymore, insisting on heroic care even if Aaron was profoundly neurologically disabled, seeing Aaron leave in a helicopter for Houston, seeing Cory's pride the first time he could hold one of his sons, their beautiful smiles, the boys touching my face and talking to me, the boys "talking" to each other, and so much more. By His Grace, God has answered countless prayers. Thank you for praying for us. There are people I have never met all over the world praying for us. God has answered our prayers. Our situation could easily have had a different outcome, and medically should have. We are forever changed by this past year. I would not change anything. We are deeply, deeply grateful to God for all of our children and for always carrying us. Thank you Christ for all you have done for us.

So Excited

Aaron is very excited to see the flash cards of everyday objects (as pictured). He is kicking and squealing. He likes the apple and other bright-colored pictures. This is pretty exciting to watch. Please see the other "glasses" pictures posted to the right. Have a good day!

October Update

We have had many developments and changes on our journey through life this month. Aaron had a vision evaluation in our home yesterday. He obviously tracked toys horizontally, vertically, and circularly. We are very encouraged. A month ago, he was not tracking. We are still waiting on his custom glasses. Hopefully they will come in soon, so check back for pictures. Aaron is enjoying sitting up in the bumbo seat and chewing on toys. He had a neurology appointment this morning. The Neurologist indicated again that no one can know Aaron's outcome, but that he looked great for all that he has gone through.

Hannah is adjusting more and more to having the boys in her life everyday. She has begun to try to interact with James. She was even trying to discipline him yesterday. Life with the twins is still an adjustment for her. We are daily tweaking how to balance taking care of the boys who have become infants, requiring more care and sleeping less, and giving Hannah the proper amount of attention.

James is doing well. He is large for one of our children and very flirty and lovable. I think he is close to 15 lbs. Aaron weighed in at 10 lbs 5oz (4 pounds since his August 10th discharge). Believe it or not the boys are almost 8 months old.

It is increasingly difficult to stay cloistered in the house, yet we are thankful the weather is finally becoming cool enough to be outside. Mart and Den (Cory's parents) found some trails to walk on nearby that offer a nice escape from the house, as well as good exercise. I spoke with our neonatologist today, she indicated that sometime in January or March we can take the boys "out". For those that don't see us this means we can not put our kids in a nursery or childcare facility of any kind nor can we have are children near children who do attend childcare. This eliminates socializing with pretty much everyone.

Thanks for dropping by. We are so thankful for God's continued work in us and our children. Thank you for you prayers, God is at work.

September Update

We have kept busy throughout the past month with primarily doctor appointments and adapting to life with three small children. We are thankful for all of the help our parents give us. Hannah is beginning to be sweet to the boys, but still misses being the center of attention. James is growing and is quite the charmer. Nicknames he has picked up are "little Hoover" (due to his desire to suck anything near his mouth and throw down a 7 oz. bottle in 5 mins), "the Magnificent" (Grandpa Middel affectionately named him), and lately "Beef cake". He really isn't THAT big in comparison to most babies, but he is our "Beefcake" baby. I think he is about 14 pounds. James is rolling over (both ways, albeit one way more than the other), smiling, and maybe even laughing. He is very friendly and loves being held. Aaron is growing. Last week I decided he is no longer a "one hander". Anyone around micro-preemies knows this means I can no longer reasonably hold him with only one hand. He is smiling and cooing. Aaron had picked up the nicknames "Wonderboy" and "tiny" (he is still pretty small, hopefully about 10 lbs).



Last week we found out that Aaron has Cortical Visual Impairment (www.blindbabies.org/factsheet_cvi.htm). It turns out his eyes "work", but his brain does not. Since he is so young his brain is changing rapidly. Cortical Visual Impairment can improve. We do think he sees some, but not well. As a result of the ROP, he is extremely nearsighted. I will be getting him glasses this week, so that we can optimize anything he may be seeing. Since eye sight is crucial to development, he will most likely be pretty delayed since his vision is impaired. Please pray that his vision is optimized and that his brain changes in his favor. At the end of the month he has a hearing test which will indicate if he is in fact "hearing" with his brain. I have no doubt he hears, but your brain processes your hearing as well. He may not be hearing as he should. I am a little anxious about this. Aaron is a very sweet little boy and nothing changes our love for him. Thank you for your prayers. All in all, we think he is doing well.

New Pictures

Settled In

We are doing rather well. Sometimes too little sleep catches up to me, but otherwise we have settled in. It is a wonder to see the boys interact. They smile and "talk" to each other. It is quite sweet.

Aaron's eyes look great. The opthamologist has marveled at how abruptly his severe ROP has cleared up. We are almost completely out of the danger zone and on to being fitted for glasses. We are thankful for such an awesome outcome. This week I anticipate Aaron will weigh over 9 pounds. James is well over 12 pounds. We are still headed to doctor appointments 2-4 a week, but that should die down soon. Aaron is catching up to James and looking more and more like himself (and James) everyday. I will post pictures later! Thanks for dropping in! Thank you for your prayers and support!

Quick Update

Enjoy the pictures. We are glad to have lots of help. Twins and a toddler is a challenging bunch! We are so thankful for our parents help. God has good timing as James did his first 9 hour sleep last night! Aaron was quite the needy baby last night; feeding 3 times, suctioning required, and a change of a pulse oximeter. Good thing Cory did not have to work today! Getting the boys together and seeing them interact and talk was AMAZING.

Thank you for your prayers!

153 Days and HOME!

Aaron came home last night! We are thrilled, tired, and trying to figure out our instant family. I will write more when I gain my footing. I will probably post pictures before I write again.

I wanted to share with you a song I sing to Aaron frequently.

Jesus, Lover of my Soul
Jesus, Lover of my soul all consuming fire is in your gaze. No one else in history is like you and history itself belongs to you. Alpha and Omega you have loved me and I will share eternity will you.

It is all about you Jesus and all this is for you, for your glory and your fame. It's not about me, as if you should do things my way, you alone are God and I surrender, to your ways

Awake and hungry

The surgery was successful. Aaron was extubated (off of the vent) before leaving the OR! I feed him once he was set back up in the NICU. He is doing well. I will write more later!! Thank you all for your prayers!

Surgery tomorrow?

No results on the MRI. Aaron had an EEG this afternoon and is scheduled for surgery tomorrow. Hopefully it goes through. Thank you for your prayers.

Laura

:P No surgery, but MRI

The surgery was cancelled. I am not sure exactly why, but most likely someone was in need of surgery for more than hernia repair. We have been the "emergency" surgery (my c-section) before and it was life saving for Aaron, so hopefully whoever got our slot did well. I am not sure when the surgery will be now. I mentioned to one of the residents, how about wrapping up some of his loose ends, discharging him, and doing the surgery outpatient. Please pray for wisdom on everyone's behalf. I am eager to have him here, but if he doesn't come right off the ventilator after surgery and it was outpatient we would then be in the PICU (where no one knows his history). We did have great snuggle time. I held both of the boys at once. James was a little uncomfortable. Aaron settled right in and was enjoying the snuggle.

Versed, a sedative, was administered to Aaron prior to the cancellation. Additionally, he had a IV and has been NPO (no food). So to take advantage of the circumstances, he is scheduled for an MRI late this evening. This is nice for me because it gives me no time to think about it. I would not anticipate results until tomorrow afternoon, but I will keep you posted!

I want to thank you all for our prayers. I also wanted to announce that we have a new addition to our family. Cory's brother, Jamie, and his beautiful wife Heidi (one of my best friends) had a beautiful baby girl last Wednesday! Claire Analiese welcome to the family! It is fun to see the family grow. Christmas will be awesome; everyone will have a baby to hold! Thanks for stopping in!

Eagerly awaiting

[8-2-09:Surgery is back on for this Tuesday. Please pray it goes well. I will post on Tuesday sometime.]

Aaron is doing pretty well. His surgery is actually scheduled for Tuesday after next. Hopefully it goes well and he can come home. His arrival home can't come sooner! He weighs 6 lbs. 4 oz. today. He is very alert and smiley. I look forward to seeing him tomorrow.

James is great. He is very charming; smiling all of the time. He is about 12 lbs. and quite chunky - we love it. Hannah asked to hold him today ("I hold") it is sweet. Thanks for checking in!

Prayer Please

Please pray for Aaron. His feeds were stopped tonight after having two poor feeds today. He was started on antibiotics in the case he has NEC (necrotizing enterocolitis). Please pray that all of his labs and x-rays come back normal so he can resume his feeds. Also, in the case something is "wrong" please pray for the wisdom and discernment of his care providers. [7-29-09: His feeds have resumed. Up until this point they have been NG (nasal gavage-tube through nose to stomach) feeds, he will start bottle feeding again today. Please pray it goes well, and he can still make his surgery listed below.]

I assume that if this is a scare for the week, Aaron will have his scheduled bilateral hernia repair and circumcision next Tuesday. Please pray this goes well, he comes off of the ventilator (after the surgery), and heals appropriately so he can finally come home to us.

THANK YOU so much!

Update

[Update 3:30 pm: The transfer will take place tomorrow! We are excited to see him. Thank you for your prayers] Aaron got the okay to be transferred back to Wilford Hall. His eyes are stable and will be checked weekly in San Antonio. Another doctor commented on how great his laser surgeries were; "could not have been better". We feel blessed that he was in such good hands. We are not sure when the transfer will happen. We are patiently waiting for the hospitals to coordinate and come up with a plan. Hopefully by the weekend. Either way he will be back soon. :)

No News

Eyes will be checked tomorrow. Headed to Houston tomorrow with my dear Cindy. I will post when I know something. Aaron has had some oxygen desaturation since the meds were weaned, so he is back on a nasal cannula. Thanks for your prayers!

Ladies Man

My mom and I drove up to see Aaron on Friday. We stayed until Saturday evening. He was doing really well. As of Saturday all of his medications were weaned and he began taking 90 ml feeds every 4 hours. He weighed 5 lbs. 9 oz. He has all of the ladies wrapped around is finger. He is the oldest baby in his "Pod" and is passed around for cuddle and social time. They tell me he is really sweet, as long as he is not hungry. He looks good and responds well. Please pray that his body responds appropriately to the weaning and that he continues to grow! His eye exam is on Tuesday, please pray that he is better and can at least come back to our NICU. I am so thankful that Aaron is with us and glad he is growing. God is listening to our prayers and I am thankful for His faithfulness.

James and Hannah are well. James weighs over ten pounds and Hannah has taken to him well. I was filled with joy today to be at church and holding one of my babies. We have a deep sense of excitement and happiness at the prospect of Aaron coming home in the next month; we will be complete. Thank you for your prayers! Much Love, Laura

Still in Houston

Aaron will not be coming back tomorrow. Thankfully his eyes have not progressed, but they have not gotten better. He will be looked at on Monday or Tuesday and a decision may be made whether or not to send him back or to keep him longer. I am a little concerned that they are looking for him to get better before he can come back. Sounds funny I know. James has been having weekly eye exams as well, and his eyes are not maturing or "getting better". I feel like if James' eyes aren't maturing, then will Aaron's? This may be a two month haul, if that is what we are waiting to see. This disease almost always resolves by 52-53 weeks gestational age (the guys are 46 weeks, almost 47 weeks). Nothing is beyond the power of the Lord. I am just sad to leave my other two darlings tomorrow. I must remember that we have had so many victories and I am thankful for them all.

Thankfully my parents are here and Cory's mother is here to help. We are so excited to announce that Cory's parents signed a lease to move here August 5! It will be nice to have their help and fellowship. I can not emphasize enough that we could not do this without local support from our parents. I am amazed by God's plan to have us at this assignment and with this pregnancy. I don't think it is coincidence. My mom and I are going to Houston tomorrow. Later in the week I will be headed back (if necessary). We have a lot of support and for that we are grateful. Again, thank you for the prayers. We are doing quite well. Hopefully I can meet some more ladies in the NICU (over 160 NICU Level III beds) and give them some hope. Have a good weekend!

Coming Back?

Aaron will have an eye examine tomorrow which will determine whether he is transported back to San Antonio on Friday, or stay for further observation. Please pray his eyes are OK or better. He may be on his way back!

He has not really gained any weight since he has been there. I will not be surprised if he is put back on O2 in San Antonio in order to aid the weight gain. The idea being his chronic lung disease makes respiration so difficult he burns calories in the process of respiration. We will see. Also, He has always been given hydrocortisone (our bodies naturally produce cortisol) and they are currently trying to wean him off of this. Please pray his adrenal system steps up and produces the necessary amount of cortisol so he can be off of the med (is stunts growth).

I will let you know what I hear tomorrow, but you can imagine our spirits are high! Praise the Lord. Thank you for your prayers!

He is Flying

Aaron arrived here onThursday. Cory and I got here Thursday evening. We were surprised to come up here and see our little boy off all oxygen! He is "flying" high and saturated in the 90's. Please pray he continues to grow and thrive without O2.

The Retina Specialist came by yesterday. He feels that Aaron should be watched for a week to see how his eyes progress. He is not currently a candidate for surgery because his eyes are not that bad. The physician was grateful to see him early in the detachment process because a lot can still be done if his eyes get worse. He said his laser surgeries were exceptional! If his eyes do not get worse he feels Aaron will have great vision (20/40 corrected)!! Please pray that the ROP disease does not progress.

We are staying in the hospital (Ronald McDonald House) tonight and plan on heading back tomorrow and coming back in a few days! Thank you for your prayers. There are several mothers here that I have talked to that I have been about to restore their hope. Please pray for a 16 year old girl who has a 27 week old baby boy right beside Aaron. My heart hurts so deeply for her. I have been able to talk to her and hope to see her more before we leave! Much Love, Laura

Houston Transport

Faithful friends, please pray for Aaron. He is going to be transported to Houston tomorrow (most likely) to Texas Children's Hospital. Both of his eyes have progressed and will require surgery to save his vision. The good news is that this is one of the Premiere Children's hospitals and Aaron is well enough to be transported to their care. Additionally, his vision can still be salvaged with surgical intervention. The bad news is he will probably be there 3-4 weeks. Please pray that he continues to stay healthy, has no additional complications, and that he is in loving hands. Please pray that the care providers have wisdom and discernment and will coordinate with his physicians here on necessary issues. He is not a normal, straightforward NICU patient and he will require quite a bit of coordination. The hardest thing is not knowing who will be taking care of him and that I will not be able to see him whenever I want. Please pray that he comes back to us soon. He was only a couple weeks away from coming home, so this is a hard hit. God has been faithful to care for him. Please pray for our strength. Thank you for your prayers!

[7-9-09: I got to snuggle with Aaron today before he got loaded into his issolette stretcher equipped with oxygen (and other NICU gizmos). It is really quite amazing. Thankfully Wilford Hall did the transport; so nurses that we are familiar with and an Respiratory Therapist accompanied him to Texas Children's Hospital. I watched his helicopter leave the base at 11:40am. Cory and I will hopefully leave within an hour to join him. We will find out tomorrow when he will have the procedure. It could be tomorrow, or we could watch and wait. Please pray that he tolerates the procedure well. God has lifted my spirits and is providing me strength. Thank you for all of your prayers! We have one more short stretch and he will be home! PS Aaron is 5 lbs. 1oz and James was 9lbs. 2oz YAY!]

Our Anniversarry - July 1

It is our nine year anniversary today! It has been a day of doctor appointments. Next week is booking up with appointments as well. I will hold off on any normal routine for a few months.

Aaron is doing well today. He weighs 4 lbs. 10 oz. He had a "spell" a couple of nights ago where he stopped breathing for 90 seconds. They had to do a full work up on him to insure he was clear of any infections. His cultures were clear; nothing grew and he is infection free. Needless to say it was a flashback to March when we got the 12am phone call asking to do a lumbar puncture. Thank God he is ok. Aaron's left eye is doing fairly well. It is not normal, but he will have some central vision. His right eye is progressing poorly. He may need a surgery to keep the retina from detaching. If the ROP does not progress further, it is expected that he can see light and shadows. We were informed that this is the worst case of ROP that the Opthalmologist has seen in his 5 years of practice. From that perspective, I am thankful that it appears he will have some vision. He may not be able to drive, but things could be worse. Please pray that the ROP does not progress to requiring a surgery. Surgery entails traveling to Baylor in Houston. I am thankful that the option is available to us, but would rather not have to go. Aaron is still on 2 liters of O2 requiring a high flow nasal cannula. Please pray that he can tolerate the O2 being lowered, as he can not come home on high flow O2. Still no news on the MRI. In order to discharge Aaron will need to go through a bi-lateral hernia repair, which require intubation and a ventilator. Hopefully once the surgery is over (not scheduled) he will return right back to lower O2 and bottle feeding all feeds. He is currently eating well. He appears to be excited at times, expecially when he has special visitors (like mommy). He smiles frequently and is crying as a normal baby would (dirty diaper, hungery, or wants to be repositioned). As he grows he is looking more and more like his fatter younger brother. I am definately getting tired of going to the NICU and many dr. appointments (please pray for more energy). I do know that I am blessed to have both boys, so the appts. and visits are better than the alternative.

James is very well. A week and a half ago he weighed 8lbs even. He is social smiling and getting to be a cute chubby baby. He eats almost 5 oz. 6 times a day. His eyes are a little bigger than his tummy. ;) Hannah is enjoying having him around.

We would have a hard time with life if my mother-in-law and mother were not around to help us out. We are very thankful for our family support. We are thankful to have both boys and look forward to life outside of the NICU. We are thankful for you prayers and faithfulness. We are abundantly thankful for God's faithfulness to us and his ability to sustain us. Have a great fourth of July!

95 Days and growing

My entries keep getting quicker and quicker (and more poorly written!)! We have growing boys and we rejoice. Yesterday Aaron weighed 4 lbs. 2 oz. and James weighed 7 lbs. 12 oz. James is a big eater and Aaron is on his way there. Aaron is up to 3 bottle feeds a day. He had some additional laser surgery done this past week on his right eye. His eyes are not responding quite the way the Opthamologist would like. He is still at risk for being completely blind in at least one eye. This week we may need to discuss the option of injecting something into the eye that attaches to the molecule that causes ROP. There are potential risks and we will discuss the option with the Opthamologist if the situation progresses. We still have about 3 months of weekly eye check ups until we are out of the woods. The MRI was postponed, as it is very cold where the MRI is located. Aaron will definitely have imaging done before discharge, but not this week. Basically, he is so small that maintaining body temperature for an hour and a half would cause him to lose weight.

James is a good boy; he eats, poops, and sleeps. Hannah is starting to come around. We are seeing fewer behavioral outbursts and a willingness to embrace her brother. Cory's dad is coming this week for a visit. He really misses Mart, but we are thankful for the lone. Thank you for your prayers. The Lord has grown both of the boys and is sustaining us. Enjoy the pictures!

Turning the corner

Real quick....I need sleep. Today was a hard day, but I am trying to focus on the postitive. We dropped by the NICU after one of James' appointments and one of the baby's had passed away. Being that we can relate a little to what the family is going through as far as NICU life goes, it was a little emotional today (this is the third baby we have seen pass since we have been there). Please pray for Zachary's family. One one hand, I am reminded of how quickly things can still change and on the other I am very thankful to God for sustaining Aaron's life. The grat news is that Aaron weighs 3 lbs. 6 oz. He lost 2 oz. yesterday, but he has finally gained substantially. He is doing well. The nurses are having a difficult time getting him to bottle feed, so hopefully he will master this soon. Other than weight and bottle feeding there is nothing complicated to report. So, PRAISE the Lord! Thank you for your prayers.

Hannah is having a difficult time with James being here. Please pray for my wisdom in handling the situation. My mother and mother-in-law are helping out tremendously. I am thankful for their help.

James is definitely gaining weight. He is still on a great schedule and he is still our 'chill' baby. I will post pictures soon. We are enjoying getting to know him and snuggling with him.

Thank you so much for your prayers. Our little squirt (as my dad calls him) is really making forward progress. Next week Aaron will have an MRI of his head which will indicate where he is neurologically. Please pray that whatever the outcome we will feel that we are in God's hands and that He can get us through anything. I have been a little worn down, but find myself turning a corner. Thanks for stopping by.

Settling In

James is settling into our family life just fine. So far he is a relatively easy baby, and hopefully he will stay this way. He gained a whopping 6 oz. his first 4 days with us. Hannah seems to like him and has started taking on the "Big Sister" role. Next week we have many appointments; one day will be a 7 hour day toting him around to all of his specialists. He will see opthamology every week until he is at least 50 weeks old (gestational); these are two hour appointments. He eats and poops well. All is good in James' world.

Aaron is still not gaining weight. Today he was 2 lb. 13 oz. He is not currently fighting anything, but the doctors think all of the work he has done fighting has attributed to his inability to gain weight. We dodged yet another bullet last week. He had an MRI and CT scan to rule out a bone infection. The Neonatologist, Infectious Disease Doctors, and Orthosurgeons all concluded he does not have a bone infection. It turns out that there is no doubt that he has Rickets. Otherwise known as hairline fractures caused by poor nutrition. He is now on full feedings and 27 calorie/ounce formula fortified breast milk (normal breast milk avg. 20 cal/ounce). We are still hoping he turns a corner. His appearance is shocking to me. I had not seen him in 5 days. He looks malnourished. At times he is very alert, looking about his issolette and smiling. He has the most beautiful smile; like his daddy. Please pray his bones do not become infected, that he puts on weight, and makes only forward progress. I hit a wall today and broke down. Obviously I am fearful he may not make it and it times it is frankly heartbreaking.

James is ready for his 11 pm feeding. Thank you for your prayers. We wouldn't be where we are without them.

One down and one to go!

James came home Saturday afteronoon. He is quite the little noise box; even while sleeping constant noise. We are doing pretty well. As usual we have help from my folks (Mom and Dad brought over brisquit - a favorite) and Cory's Aunt Marcia is in town providing all sorts of help. I can't imagine two babies being here. It will be crazy! I know the Lord will equip me to provide and I will have help from our parents.

Hannah is doing pretty well. She kissed "little man" today. She generally giggles and snuggles up by the two of us when I am holding James. There is a little jealousy, but I think it is all par for the course.

Please pray for Aaron. He had a large residual (left over food in the stomach from prior feeding) this morning, so they stopped feeding him breastmilk. We are praying his afternoon x-ray shows no gas pockets (evidence of NEC). He has not gained any weight in the past 3 weeks. Please pray his tummy will heal and that the NEC does not return. [5-21: Aaron's xray came back normal and he was able to feed again. However, he had another large residual last night. He is being watched closely, so I am confident that they are on top of anything that may appear.]

Thank you for your thoughts and prayers. I will keep you posted. I have to go eat and pump while I can!

Love,
Laura

Getting Ready to Celebrate!

Very quick one. Aaron is off the ventilator!!!! He is on the CPAP at 35% O2; I will get some pictures today. He is beginning to feed today. Please pray that the NEC does not return, or he will most likely need surgery. Please pray that the doctors would have wisedom regarding a safe rate to increase his feeds. He is starting with 1 ml. Aaron is still hoovering around 3 lbs. plus or minus an ounce or two depending on the day. Hopefully he will turn the corner and have a "normal" preemie progression.

Due to some apnea, James will not come home until Wednesday - Friday next week. He is 4 lb 4 oz. Please pray his hernia repair and cicumcision goes well (Monday or Tuesday), so that he can come home. Got to go, Hannah is fussing!

Have a nice weekend and thank you for the prayers!

Tuesday

I will be quick. I am getting ready to go to the hospital. I got some antibiotics (first time in 13 years), so I will be free to see the boys. James will likely be home in the next 7 days, so we are getting the house all ready for him. Hannah's new room is set up, now she just needs to sleep in the "big girl bed".

James is doing well. He is 5 lbs. 1oz. He is eating well and occasionally needs help pooping. He will have a car seat challenge tomorrow. The nurses place the baby in the car seat for an hour to make sure they do not have any apnea or bradycardia while riding in the car seat.

Aaron is doing pretty good. He has a raised white blood cell count, so his team is looking for infection via blood cultures and ultrasound. He weighs over 3 lbs. I don't think they have come down on his vent setting anymore. When they are sure he is stable, they may try to take him off all together and see if he can "fly" on his own without the vent but with some other o2 device. James has been visiting Aaron's issolette every other day or so, enjoy the pictures.

Friday

Aaron had laser eye surgery a couple of hours ago. Cory met with the surgeon and felt like it was the obvious and prudent choice to make to go ahead with the surgery. The surgery went well and Aaron tolerated it well. He weighs a strapping 2 lbs. 14 oz. He is through the crucial part of the NEC, but it is still impacting his system. Please pray that the NEC leaves, his system heals, and that it is gone for good! Our little guy has gone through many preemie hurdles, and I pray that this is the last one. He has been stable and cozy most of the week. He is moving quite a bit and probably hates being tied to his vent. His ventilator settings continue to come down. We are hopeful that he will turn a corner and work his way home to us. We don't anticipate him until August.

James is moving to bigger bottle feeds and is a growing boy. He weighs in at 4 lb. 12oz. He still needs some assistance lately pooping, but this is common for preemies. Hopefully he can continue to move forward and take all feedings by bottle. I hope to begin breastfeeding him this week.

We are doing ok here. We have been sick on and off. Our family cold has now taken on a cough. Some days are good, while others we feel awful. I have been laying low the last few days hoping that I am well enough to visit the NICU Sunday or Monday. We have quite a bit of rearranging to do around the house. I am confident it can all happen in the next week. Thank you for your faithfulness, you thoughts, and prayers. Oh, and thank you to whoever sent us a cute and anonymous layette gift from Adventura, Florida. The Lord is most definitely sustaining us. I am amazed at all He is doing in us, but think that in a year I will be even more amazed as I look back on this time. Have a great weekend!

The Boys

I write this post sick again! :( I have a cough today and feel pretty bad, so I am playing it safe and not going in. The boys are doing pretty well. Aaron is still on TPN, but gaining weight. Today he weighed 2 lb 12 oz. I got to hold him on Sunday. It absolutely sent me over the moon. He enjoyed our cuddle time and had high oxygen saturation without upping his requirements. He still likes my singing! The past few days that I have gone in, he has seemed very comfy. His ventilator requirements are decreasing. I imagine he will not be fed breast milk for another 3 weeks. He is past the critical part of the NEC infection for now. There will be concern for the NEC coming back once he resumes feeds. He probably have eye surgery in the next few days. The opthamologist has said that the blood vessels in his eyes are not developing properly (common in preemies). If Aaron does not have eye surgery, he has a 70% chance of being completely blind in both eyes. The laser surgery salvages the central vision in the eye most of the time. He will most likely have limited peripheral vision, but that varies patient to patient. Please pray he continues to go down on the vent settings, not show signs of NEC, and that he will not be completely blind.

Sunday evening James was moved to the Level II NICU. He is having some problems pooping on his own. Please pray that his bowels move more than they have been and that he poops without a suppository. Last I heard James was 4lb. 10oz. I have not been able to speak with his nurse today. He has progressed to 4 bottle feedings a day. He is not taking all of his bottle feedings. Hopefully this is due to his system being FULL the last few days. He was very uncomfortable yesterday and did not want to take his bottles. I did get to give my first bottle to him on Sunday. Tomorrow we may try to see if he can breastfeed. Please pray that his feeds go well and that he breastfeeds well.

Thank you for your thoughts and prayers. It has been wonderful to hold my babies and I pray they can come home soon. We have been doing well. My parents took Hannah Saturday and we had a wonderful date night, followed by hang out time with Cindy and Christian (good friends). Have a good week.

Aaron and James

A quick update. James is doing well. [Added 4-23: James is off Oxygen! He has been off for over 24 hrs. Please pray that he remains strong enough to breath completely on his own. Yesterday he weighed in at 4 lb. 2 oz. Please see his new picture to the right. He looks like my father-in-law, Den, to me in this picture. Everything is going pretty well. He may be booted out of NICU level 3 and moved to level 2 if they run short on beds. Now James needs to master bottle feeding. Please pray that he gains strength to bottle feed and can take entire feeds this way. If he is breathing on his own, weighs over 4 lbs. 4 oz., is feeding entirely on a bottle and is not having apnea or bradycardia he will be discharged. We still do not expect him until mid-May to mid-June. The sooner he is home, the better.]

Aaron was diagnosed with NEC yesterday. He has does not have a perforation in his bowel, but his x-ray was abnormal. He is not taking breast milk and is back on IV nutrition. He is being treated with a long course of antibiotics. He will not begin feeding again for a while (not sure if it is 2 weeks or a month). Please pray that he gains strength and heals. NEC can be very serious, hopefully by God's grace it will not be in his case. Thanks for checking in. [Added 4-23: Please pray that Aaron is stable enough to be held. He has never been held and I think it would be good for him.]

Love to all of you.
Laura

April 19

Things are going pretty well. This will be short because Hannah is asleep and I need to clean my house. Hannah and I are both sick with a cold. I can't visit the boys until I am back to health. :(

James weighs 4 lbs. 1 oz. He is doing pretty well. Please pray he doesn't get my cold since I held him yesterday. Preemies born at 27.5 weeks have no antibodies and very weakened immune systems. A cold can be a huge setback for these little guys. It has been great being able to hold James. He was very alert yesterday. He is wearing cute clothes and is able to control his body temperature, so his isolette is open. It finally "feels" like I have babies since I can hold one of them. NICU life is strange when you can only look at and talk to your children. Not being able to care for the boys cuts out the bonding that comes from providing such care.

Aaron's oxygen saturation has been "yo-yoing" from high to low. This is bad for eye development, please pray his eyesight is protected. His lungs are in poor condition. At this point being off the ventilator looks like a big hurdle. The ventilator damages to lungs, however he needs it to live. This week I think they will try to administer a mist into his tube that is supposed to strengthen his lungs. If this does not work they may try a diuretic to take some fluid off his lungs. And their last option is steroids to mature his lungs. If this does not work he will most likely need a tracheostomy to prevent possible infection. The trach is not necessarily permanent. The hope his that as Aaron grows his need for the vent will be outgrown and he can eventually breath on his own. He was 2 lbs. 6 oz. yesterday. He is taking HUGE feeds 24 cal. If his feeding trend follows James', he will probably take off and pack on the pounds this week. Thankfully he has no residuals (food left in stomach 3 hours after a feed) and he is pooping. No residuals and pooping show his body is processing the milk and decreases his risk of NEC. I would LOVE to hold Aaron. It is hard not being able to comfort him or hold him.

Hannah has NO idea what is in store for her. She is very bright, but at 19 months she does not understand she will have two brothers home in the next 8 to 12 weeks. She is a major "mama's girl". Please pray that she adjusts to the change well.

We are doing great. Thank you for your prayers and support. Please pray that I get better so I can see my babies. Have a great week.

Happy Easter

This week has been great. The boys are both doing well. The nature of NICU life makes me nervous to type such bold statements. Aaron is off all medications that support his systems. He is two days off dopamine which kept his blood pressure where it should be. His blood sugars are much more stable; he only requires two heel pricks a day. He has gone from 1 cc of breastmilk to 12 cc (a little over 2 teaspoons). Today he weighs 2 lbs. 7 oz.!! The GREAT news is that the hole in his mitral valve is GONE. Aaron has no regurge and his heart has gone back to normal size. He had a new head ultrasound that showed that the bleeds he had are smaller, his ventricles look more normal, and his brain in general looks more normal. This does not change any neurological outcomes for him, we still do not know, but we are hopeful. I continue to pray that he would be completely healed. In general, I would say Aaron looks a lot like what James looked like 3 weeks ago. He is still on a ventilator, albeit it is a self-weaning type of ventilator. Aaron has begun to be super sensitive to noise and light (as James was). He gets very angry at times and would cry if he was not intubated (breathing tube goes between the vocal chords). I think the most difficult thing for me, is seeing him "cry" and not be able to comfort him. Today he looked very comfortable and peaceful. Also, he did have his first regular (breast milk - no more miconium) poop. We have had genuine answer to prayer and we praise God for his Grace. Please pray that he continues to require less support, that he continues to grow, and that his body heals.


James is on 2.5 liters of O2 running at a rate of room air. He is doing well. I can almost emphatically say the boys have blue eyes. At times he is very awake. His eyes look huge on his little body. Today James weighs 3 lbs. 7 oz. which is awesome. He takes 32 mls of breast milk every feeding. He is much more interactive than he used to be and less sensitive (able to handle touch and sound). [From 4-13-09 James will probably be able to wear clothing and start to breastfeed this week! He gained weight. Possibly 3 oz. yesterday. I am excited to be able to take some part in caring for my boys.]


Both boys had their eyes examined Thursday. They both have stage 2 retinopathy, ROP. Basically, the eyes as all systems are not fully matured in preemies. Once born, preemies eyes do not develop quite as they should. Blood vessels of the eye, that are still forming, do not grow properly. If the condition does not progress, the boys may just need glasses, have nearsightedness, and maybe a lazy eye. Most of stage 1 and 2 ROP (90%) spontaneously corrects itself over a few years. Please pray the ROP does not progress.

We are thankful to everyone for their thoughts and prayers. We are doing well and our thankful for our supportive family and friends, Hannah, our boys, and our Savior. I can honestly say that apart from God and HIS strength through us, that I do not know where we would be. We have a peace that surpasses our understanding and we are truly being carried through this trial with hope for the future no matter what it holds for us. Happy Easter.

The Third Week of Life

Fortunately this past week was uneventful. I wanted to give a quick update on the boys. Aaron actually pooped on Thursday night. This was unexpected given his condition and the fact that he has never eaten. Since things are "moving along" they began to feed him, which is awesome. We have been warned however that he is a good candidate to contract necrotizing enterocolitis or NEC. NEC can be treated. However if contracted, NEC is very serious. The team is "priming" his stomach for full feeds. His feeds are 1 cc of breast milk at present and will be for the next few days. Aaron's next hurdle is to not contract NEC. Only 5% of preemies get NEC (he fits all criterion for contracting NEC) so we are hopeful he will push his way past this next hurdle. Aaron had another EKG yesterday. The hole in his mitral valve did get a little bigger. He is not in heart failure and the size change seems inconsequential. Please pray that as his heart grows, the hole remains the same size. We were told that no heart surgeon would touch him due to his neuro workup , his critical condition, and the fact that valve replacements are not lasting. Aaron's endocrinologist was happy with his sugar levels. Now that feeding has been introduced, his team will have to find the balance insulin he needs. A month before discharge we will find out if he needs an insulin pump or will if the diabetes is transient (common in preemies). Aaron is tolerating his wean on dopamine and o2. He is still on a ventilator and probably will be for some time.

James is hanging out in the NICU. Aaron is pretty much the most high maintenance preemie, while James is the opposite. The final results are not back from our thyroid testing. My antibody levels were pretty high indicating Hashimotos disease, so it is probably likely he has transient hypothyroidism. He is still gaining weight, however some days he loses. James is right on the cusp of weighing 3 pounds. He gained 40 ounces yesterday. With a smile I write that he had a 30 ounce poop last week (that must be like 5 pounds to me). He is now in 'big boy' diapers (preemie size) due to his prolific pooping. He is tolerating the wean down to four liters of O2 at a rate of 21-28 percent. Please pray that he continues to eat and grow well.

Thanks and have a good weekend!

April 2 (over 3 weeks of life)

Before I do an update, I thought I would share how we choose the boys' names. Aaron Jon Middel was named after two of Cory's dear friends. Aaron Palma (I think the last name is correct) was a childhood friend of Cory's who passed away from cancer when Cory was very young. Aaron Baeder is Cory's best friend from childhood to present. Aaron and his wife Heather are dear to our hearts. Jon is a Middel family name. Cory's dad is Dennis Jon, Cory is Cory Jonathan, and one of Cory's brothers is named Jon. James True Middel is named after our great friend James True Loeblein. Jim and his wife Carol are mentors and great friends to Cory and I. Jim is an identical twin himself. We met Jim and Carol in Washington D.C. We try to see each other at least once a year (it does not hurt that Jim and Carol have always lived in great destination cities). Before we knew the complications of the pregnancy, I choose Aaron to be Aaron based on his prowess to move around quite a bit in the womb. He seemed to be and is a little fighter. James seemed calm and even keel like our friend Jim, so I choose him to be James. Now for the updates.

Aaron had surgery on Monday to install a central line to receive his nutrition and some of his medication. The surgery went very quickly with no complications. The central line was installed because his PICC line (an IV type catheter which was providing the support the central line is now providing) was colonized by staph. He has not had a positive blood culture since March 28. The Neonatologists believe they are on top of the infection. Please pray that his central line has no complications (infection, skin break down near site, etc.). Aaron does NOT have meningitis! Overall he is doing much better than he was 5 days ago. Infection is very common when one has IV's and the longer an IV is in use, the more likely it will become infected. Infection is common and is a preemie's biggest set back. Aaron's team of Physicians (Neonatologists, Pediatric Specialists, Fellows, Residents, and Interns) are trying some new management strategies to stabilize his blood sugars, blood pressure, etc. Please pray they are successful. Sometime in the next few weeks they will try to start feeding via gavage tube (tube that is gravity feed that goes through the mouth into the tummy). Aaron has regularly been receiving blood transfusions (which are less than 2 teaspoons). I assume he will receive another ultrasound from the cardiologist to inspect the hole in his mitral valve, please pray that the hole has not increased in size. Aaron is almost 2 pounds.

James is gaining weight; he is almost 3 pounds. He is not gaining as much as his team would like, but they will wait a few days before changing what the feed him (breast milk with fortifiers). He is still on the nasal cannula. He has gone from 5 liters of O2 to 3 liters and back to 5 liters. Today they will see if he will tolerate being weaned to 4 liters. James has had 3 sponge baths in the last week. He has huge hands and feet. Our good friend Heather flew down from Michigan to help out for a few days. She took some pictures of the boys, so I may have some good ones to post in the next week or so. Both of the boys' thyroids are out of whack. I may have an autoimmune disease that created antibodies that attacked my thyroid and "killed" it (so to speak). The Pediatric Endocrinologist is hoping that my antibodies crossed the placenta and have created a transient form of hypothyroidism. The boys are both being treated with synthroid and we will find out if they have transient hypothyroidism or the real deal later this week. It is pretty minor in the scheme of things and can be treated as mine is with hormone replacement. Hopefully James will continue to feed and grow well so we can bring him home. It will still be some time before we can bring the boys home. If I had to guess James not earlier than mid-June and Aaron August.

Thank you for your prayers. We are blessed with help from all over. Our church brought us meals for two weeks. The meals were all tastey and devoured! Our friend, Heather Baeder, flew down from Michigan to help on Sunday through Wednesday. She watched Hannah, drove me around, made meals, picked up after us, and provided great girl talk. My parents have been bending over backwards to watch Hannah. My mom has been cleaning my house, watching Hannah and carting me around. I am not always the sweetest daughter either and she still shows up the next day or night to help me out. I have had rides from members of my Bible studies and my friends Cindy and Gina. My mother-in-law, Mart, will come in town from Michigan this Saturday for ten days. Everyone has been pouring out help and we could not do it without anyone. It has been a blessing to come home from the NICU and not to have to think about what I have to make for dinner. I still have 5 days until I can officially drive and I will be so glad when the time comes. Thank you so much for e-mails, text messages, and phone calls. I am sorry I don't get back to all of them, but we are touched that we are in your thoughts.

This journey has brought us the blessing of thankfulness. We have been blessed with great friends, parents, brothers, sisters, and churches (past and present). We have new friends that have come alongside us to help out in anyways. It has been wonderful to hear from and see our friends that we have such a history with. Our parents and siblings have been greatly supportive. Members from all of our past churches have been supportive through prayer. Our current church has also been such a blessing even though we have been there a short time.

Overall we are doing remarkably well. Cory's two week conference began last Monday. He is hosting the conference and teaching sections of it. It has been going well. We have peace and trust in what the Lord will do in our lives with these two precious boys and our sweet Hannah. Have a great weekend!

Where we are

We got some hard news on Tuesday. Aaron had an EEG done to look for brain damage. His results came back 'abnormal'. In his case the abnormal results indicate that he was deprived of oxygen for prolonged periods of time in utero (via abnormal and reverse cord flow). It appears that he also sustained a stroke in utero as his right hemisphere is primarily impacted. Evidence of this is he is already showing signs that the left side of his body is weaker than the right. The extent of the brain damage is unknown. It could be mild cerebral palsy or profound mental retardation. We will pray for the best and prepare for the worst. In a couple of months we will seek counseling for caring for a disabled child and integrating Aaron into our family.

The possibility of severe mental retardation is my greatest fear, as it would severely impact my life as his primary care provider. My initial reactions were pretty selfish and probably normal. Stretching from "How will I go to the gym?" to "I don't want to change his diaper in 30 years". The diagnosis has been a challenge to us. It has brought up some interesting and sometimes ugly (things in me) issues. It raises the question of how much do I value life? Do I respect and love life, God's creation, even if it isn't how I would have designed it? Aaron may never interact with me, even though I take care of him all day. Do I love him less (rhetorical)? God values and loves him regardless. I feel like God is preparing my heart to be his parent. I do however need a lot more work! Please pray that God equips us to be his parents and that we have wisdom while raising two other children. We feel strongly that we should continue to do everything we can medically to ensure his survival (alternatively you can withdrawal "heroic care" provide "comfort care").

As our week continued the news did not get better. Aaron has a staph infection in his blood. Apparently this may have caused a hole in his mitral heart valve. Additionally he is being tested for meningitis. So far the culture for meningitis is negative, but it take 3-5 days to know the results. He is back on many meds to support his life. His doctors do think that he can pull through, albeit it is still an uphill battle.

On the other side of the spectrum is James. He is off of all IVs, off TPN (IV nutrition), on full feeds of breast milk and some formula, and off all vents and forced air contraptions. This is a big praise! He does have a simple nasal cannula to aid his breathing, but nothing that damages the lungs (or face). He has 1-2 episodes of apnea a day, but this is normal for preemies. Today I watched him sleep. He smiled and seemingly giggled as I watched.

Both boys are responding to my touch, praying with them, and singing to them. We still pray for Aaron's complete healing and for James to continue to progress forward. I pray that Aaron does not suffer and experiences peace.

We are so thankful for all of your prayers, meals, rides, e-mails, and thoughts. I know there are hundreds of people praying for our family and our boys. We do have peace and strength that surpasses our understanding. We are definitely sadden by any potentially poor prognoses for Aaron, but we have hope. Even if things do not turn out as we would want them, even though life may be difficult, we have faith that God's strength and Grace will continue to carry us.

Update

We finally got to hold James! He is doing pretty good. He is taking full feedings and is off TPN (IV nutrition). He loves to lay on his stomach and he LOVES being held. He is not quite ready to come off the CPAP (assisted breathing) and has a bruise at the base of his nose from the device. Please pray he can come off the CPAP, that his nose heals and no further damage is done (worst case it can cause infection and bad cosmetic damage requiring plastic surgery later). His 8th day head ultrasound showed no brain hemorrhages, which is awesome because this is what he was at high risk for the first week of life. Overall, he is doing really well and moving forward.

Aaron is hanging in there. His condition continues to be critical, but stable. He is struggling to maintain his blood sugars, which is primarily a result of an immature system and stress. It was inferred today that if they can't stabilize his blood sugars or if he can not naturally do it, it could be pretty harmful. Please pray that he stabilizes. His 8th day head ultrasound revealed no new brain hemorrhages. The ultrasound does indicate that he did suffer from oxygen deprivation in-utero. The effect of this is unknown. We have been told he may be able to go to college or he may not walk. Time will reveal the impact of the hypoxia. Meanwhile we pray for his complete healing, that he has peace daily and that he is not suffering. By the way, he loves when I sing to him (he joins Hannah - I can't say I have any other followers). [From 3-22-09: Aaron's blood sugars have stabilized for the last 8 hours. The stabilization has occured before, please pray it is indefinate. He had a positive culture indicating infection. Please pray he overcomes his latest hurdle.]


We are doing o.k. We pretty much have the same concerns of most new parents; ironically lack of sleep. Hopefully Aaron can turn a corner this week and progress forward.

Thank you so much for your prayers! We appreciate it. For the most part we have peace that surpasses our understanding, however this last week was a real challenge for us.

Much Love,
Cory and Laura

Quick One

I am about to get some sleep, so I thought I would do a bullet summary to keep you all posted.

- James is off the ventilator (for now) Yay!
- Aaron is off insulin, Nitric Oxide, and epi
- Aaron is getting smaller amounts of dopamine everyday
- James pooped twice today (first time ever today)!
- James has been gavage eating breast milk. He is up to 6 mls every 3 hours
- Both boys are under Billy lights so they sport cute protective glasses.
- Aaron has quite a bit of edema, but it is getting better. Pretty soon I won't be able to call him "Puff Baby"
- I heard James cry for the first time today. It was really cute.
- Aaron has a head ultrasound tomorrow. We are hoping we don't see more signs of what could be brain damage.
- James finally tolerated me talking to him today. His immature central nervous system makes him sensitive to sound, touch, light, etc. He still doesn't want to be touched. Hopefully I can hold him in a few weeks.
- Aaron likes me to hold his hand. He does "cup" my finger and his oxygen saturation goes up.

Got to go get some Hannah time before we both go out for the night!

Thanks for the support and prayer. Forgive me if I can't call back. Between 3 kids, pumping every 2-3 hours, and taking care of myself there isn't much time.

They are here!

I am so tired so something may not post for several days. The run down is that I was admitted on Monday, had an emergency C-section on Wednesday, and was discharged today. Aaron Jon Middel was much bigger at 1 lbs. 9 oz.. James True Middel was 2 lbs. 7 oz.

Both are on many meds to stabilize their bodies and make up for their immature organs/systems. As one can imagine there are complications due to their age. Both boys have been stable for 30 hours. We have a lot of hope and love for our little guys.

Pray that they can be taken off ventilators and meds and can hold their own. Aaron needs to pass his myconium in order to get any solid food (food via IV for now). If he does not he will have to have surgery (it will be his second) but he will not be stable enough for that for 6-8 weeks. James is being fed breast milk. He has some issues, but is looking better.

NICU is quite the roller coaster ride. Aaron has almost passed several times. We are blessed to have them in our lives and will cherish everyday we have!

Much Love,
Laura and Cory

All Aboard

We are still here. Yesterday's appointment went well. Our specialist thinks that Aaron looked better than he did on Wednesday. I am 27 weeks! We feel very blessed to still have babies on board. Cory and I were just talking last night how I met a lady in the waiting room when I was 23 weeks. She was 29 weeks with twins. I remember feeling like 5 or 6 weeks was SO long away. Now we are almost there and hopefully we can go further. Aaron is about the size of a 24 week (gestation) baby. If we could go 2-4 more weeks that would be awesome!

The boys are both breech (head up, legs down) and facing each other. James is definitely punching Aaron. Hopefully that is OK. Cory tells me to get used to it. I told him I wouldn't think twice about it if Aaron weighed more than a pound!

I have 6 appointments next week. 3 ultrasounds, one diabetes analysis (to see if I have GD), and two non-stress tests. It will be a long week, but I am sure we will be just fine. As long as things look the same (stable) I will not be admitted to the hospital. Our doctor was even talking about making it to the end of March! Only the Lord knows when it will be time. Meanwhile, we are thankful to be held by His Grace.

Good News

Today I am 26 weeks and 5 days.

Yesterday was a 6 hour day in the hospital, but it was all worth it. My morning appointment was a growth scan. Aaron had gained 3 ounces in the last two weeks (which is the most ever). He is now 15 oz. James weighed in at 2 lbs. 3 oz. The amniotic fluids were great; just where they should be. Aaron was moving around quite a bit, as was James. Aaron's cord flow was abnormal, but a ton better than last week. His pericardio effusion (water on heart) was almost entirely gone. Our doctor stresses that he still thinks it will come back. Hopefully it doesn't, but we will take the good while we have got it.

Late in the afternoon I had a non-stress test to look at their heart rates over a longer period of time. Both were normal for their gestational age.

I am currently using a glucometer to see if I have gestational diabetes. Twins, family history, and hypothyroidism make me likely to have it. I think my readings are normal to borderline which is good. I go in again on Friday for a shorter u/s appt. Hopefully we are holding steady and can make it a few more weeks.

We are very excited to that Aaron is almost 1 pound. God knows when to renew your hope with encouraging news. I am just taking it easy being the queen of the couch. Hopefully my "reign" will continue a little longer. :) Have a good day.

A Little Better

Thank you for your thoughts and prayers. My ultrasound (u/s) showed that things had improved since Friday. Aaron had less amniotic fluid than Friday, but more Thursday. The level is adequate. He was back to his old self moving almost too much for the u/s measurements. His cord flow was abnormal, but not as bad as Thursday. His pericardio effusion (water on heart) shrank. Our specialist thinks the steroids gave him a little boost,but he does not anticipate the heart to go back to 'normal', as Aaron is still in distress.

Overall, a good appointment as far as we go. I go back 3x week for the next 2 weeks. I will have non-stress tests 2x week. I am on modified bedrest. My mother and Cory have been real troopers helping me out. I am still instructed to go to all of my appointments with bags packed for admittance. My goal is to make it to 28 weeks (next Friday) and after that we will see where we are. At some point it may be better for Aaron to be out. He really needs to break 1 lb, before that is a good option. I know sounds crazy.

Have a good week.

Free Bird

Thank you, thank you, thank you for your thoughts and prayers! We escaped again! That isn't to say I don't have to be admitted in the next week, but we were happy to receive the 'get of jail free card'. Last night I had another steroid shot. These make me VERY hyper and unable to sleep [Similar to the B12 shots I had to take in Wichita Falls - for those of you witnesses]. We had an ultrasound and Aaron's amniotic fluid levels had doubled. The BASIC explanation for this change, from what I understand from our specialists here and in Houston, is that we are a hybrid case of SIUGR and TTTS. I think I discussed TTTS a little in my first post. Identical twins with a shared placenta (this is our case) share vascular connections that connect the boys through the placenta. The vascular connections allow blood and amniotic fluid to shift back and forth between each twin. There is typically what they call a Donor twin (Aaron) and a Recipient twin (James). Thursday James had a lot of amniotic fluid and Aaron had very little. On Friday there was a shift of the fluid from James back to Aaron. We are kind of a strange case because the SIUGR is most definitely present, but so is this TTTS well. The two diagnoses are considered cousins in the Maternal Fetal Medicine world.

I have to say that all of our physicians have been wonderful and very knowledgeable. We are blessed to be in a location with a level 3 NICU and with a group of Maternal Fetal Physicians (perintologists). Our hospital serves all of the active duty military and dependents giving birth in the San Antonio area. San Antonio has one of the largest concentrated military populations. It amazes me that we could have been assigned anywhere, but God's plan was to put us near my family and near our best access to care. We are very blessed.


The plan is to go in again on Monday, and possibly everyday to every other day next week. I go with my bags packed each time, and depending on the circumstances may be admitted. It is still our intention to take the pregnancy out as far as we can. 27 and 28 weeks is MUCH better than 26 weeks. We will see. I am on modified bed rest.


My mother has been a tremendous help. I was contracting yesterday morning and asked her to come over at 7 am just in case. I was a little dehydrated; my contractions stopped by 9am. My parents were gracious enough to take Hannah yesterday evening. Since I was not admitted last night, Cory and I had a glorious date. I was very blessed by our time. The steroids had me very animated; my brain moves a mile a minute. I pretty much talked his ear off and was in a jovial state.


I have learned so much in the last 8 weeks. At my best (which I am not always at), I try to see the blessings that we are reaping during this time. Really, there are quite a few. I am thankful to the Lord that Cory and I have really leaned on each other through this time and have been brought so close. The "trauma" of the events has cleaned the tarnish of all of the petty things that occur in everyday life; revealing the deep love and respect I have always had for him. Amazingly, all hurt and hang ups fall away and we are left with what we started as. We have realized that SO many things from day to day life don't matter. Basically you can say that grace and respect have abounded.

We will keep you posted. I will leave with a quote Den, Cory's dad, read me 4 weeks or so ago. It was also my scripture for the day from the sweet devotional that our dear friends from California, Ryan and Jenna, sent to us.


"We also boast in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us, because God's love has been poured into our hearts." Romans 5:3-5

NICU Life on the horizon

We had another ultrasound today and it was not very good. Aaron had very low fluid in his amniotic sac. Additionally, his heart is enlarged and the walls are thickening. Basically his heart is working overtime to pump blood since he has reverse cord flow, which means the heart failure is progressing. I had my first round of steroids today and go in for my second round tomorrow. Steroids have shown to help mature the lungs and reduce brain hemorrhages in premature babies. Studies also show that the steroids will probably not help Aaron due to his small size and immaturity. After my round of steroids tomorrow night, I will have another ultrasound. Depending on what is found, I may be admitted for hospital bed rest. This way I can be monitored daily and available C-section if things change suddenly.

We are grateful to have come this far. Aaron has put up a good fight and that may continue. Our specialists will be surprised if we make it two more weeks without Aaron's health going further down hill forcing a C-section. We have surprised them thus far, so only the Lord knows! Thank you so much for your prayers and thoughtfulness.

It has been hard the past three weeks and some part of me will be relieved when the pregnancy is over. With all of that said, we are pretty calm. Everything is in the Lord's hands and we know everythign will be used for good in the long run. I feel like we are doing well considering the circumstances, but continue to pray for strength and steadfastness. We are hopeful for defying the odds, but aware that it may not be His plan.

We have to prepare for our upcoming life in the NICU. There is no doubt we will have ups and downs after the births. We have been told not to anticipate taking the boys home before June and perhaps longer. Please pray that we have the Lord's wisdom and discernment; there may be difficult choices on the road ahead. If admitted, I may see if Cory will post. My biggest concern is that our boys will suffer; please pray that God's Grace covers them. My mother and Cory will also need prayer being that they will be working overtime to care for Hannah and accomplish their daily tasks. Please pray also that Hannah will be ok in my absense (I am sure she will :).

Still going

There is not much new to report, which is good. We have had two ultrasounds since the last post. Things pretty much looked the same. Our last u/s was a growth scan. James was measuring 1 lb 10 oz (which is big for his gestational age) and Aaron was measuring 12 oz. Aaron is still growing which is good. If we go another 4 weeks and the trend continues he will be a pound. 500 grams (or 1 pound) isn't great, but it is a huge milestone for a restricted growth baby. It gives Aaron a shot at survival outside the womb. Hopefully we will go farther than 29 weeks, and he can grow a little more. I may receive steroid shots in the next few weeks. The shots are generally administered if they think delivery may be close. The steroids will mature Jame's lungs (by about a week) and prepare him for delivery. The steroids historically have not shown to help babies as small as Aaron, but who knows? If we recieve the shots and go two more weeks without delivery we can recieve them a second time.

We are blessed to be held steady by God's grace and appreciate your many prayers! We have not had a chance to meet with the neonatologist, but hopefully by next post. Our next ultrasound is this coming Monday.

The photos on the right our from our last ultrasound (24 weeks, 4 days). They appear to look very 'Middel'. We are able to see a little more on James since he has more than a pound on Aaron, but I would assume they look the same since they are identical twins.

All here...on the roller coaster

Where should I start? First I should thank everyone for praying for us. There are many people that I don't even know praying for us. We are grateful for them and for all of you that we know. We have definitely felt lifted up in prayer. The last two weeks have been difficult to endure, but I am sure good will come out of it later. I should also say that James and Aaron are both still with us and for that we are truly blessed.


Last Monday we went to our ultrasound. We were told we had reverse cord flow, that Aaron was more discordant in size than previously (50% smaller than James), and that he had fluid around his heart and chest wall. Our doctor's impression was that Aaron was likely in the early stages of heart failure. We were told he could possibly worsen and pass away within a few days to 1.5 weeks. It was recommended that we consider cord occlusion (cut his umbilical cord) to decrease the likelihood that Aaron's death would hurt James. I could spend a lot of time going into detail about how I/we felt, but obviously we were devastated.



We were sent to specialists in Houston on Wednesday; spending the day and a half before trying to prepare for the worst. We were not necessarily committed to a procedure. We did have to consider that if things were as bad as we were told, we had to consider the life of our other son James and the impact the death of Aaron would have on him. In Houston, we had our ultrasound and Aaron was moving up a storm. They couldn't get all of their measurements (partly because of size and partly because of movement). The doctor examined him and said, "Well, we should watch and wait." I shot right up and asked, "What?" We had a consultation and were told Aaron appears to be getting what he needs to maintain so much movement and there was no way they could get approval for cord occlusion even if we wanted it. We were told that things don't look good for Aaron since it is questionable weather or not in four weeks he will even weigh a pound. We were also told that any procedure would jeopardize James' life almost as much as not doing anything at all. Cory and I have been under the assumption (as it has been portrayed) that if Aaron passes, James has a certain outcome of death or severe neurological damage. Apparently this is the case with 25% of SIUGR, but not 75%. We left the appointment relieved and pretty happy. In most cases being told your son probably won't live wouldn't make you happy, but at least we were not forced into a position to choose to end our baby's life prematurely.


Needless to say it has taken me about five days to get past this and be in a place that I can say is positive. When I knew we had pretty serious problems, I prayed "Lord we can do this together, I am not going to complain, but my one request is that we do not have to be in a position of choosing life or death for any of my children (of course I begged the Lord for the lives of both of my unborn children to be spared)". This past Monday, we went to our ultrasound and Aaron's condition had not progressed. The Lord did answer my prayer because this is the last week that any procedures can be done. I cannot tell you HOW thankful we are.


This Thursday we have another ultrasound and a meeting with the neonatologist to come up with a game plan. Due to the complications, at some point conditions outside the womb will likely be more favorable than inside. Aaron's condition will be evaluated and conditions will be set determining a threshold for delivery. Please pray that we have this luxury (I could go into labor next week). Both of the boys need to develop as much as possible before entering our world to have the best shot of survival. I anticipate a 28 week goal, but we will know more on Thursday.


We are doing pretty well. Cory is very busy with work, but still helps out quite a bit. My parents have been helping us. Cory's parents will be in town for support and a pre-planned "Hannah fix" this week. Thankfully I feel strengthened by the Lord, and there is no other way to explain it. Yesterday I didn't think I could show up to another ultrasound fearing bad news. I definitely hit "I don't know how much more I can take". All that being said, today is a 180. I am going to be positive and continue to pray that we crush the odds. Today I started to get excited that we could see our boys in as little as a month. Obviously I don't want them to come out sooner than what is safe, but I look forward to meeting them.


Thank you for your prayers and support. I can't imagine where we would be if God wasn't with us every step of our journey. Much Love,Laura

01.24.2009

It is 5:30 am on a Saturday morning. I woke up about half an hour ago to the boys moving around in my tummy. With my first pregnancy I would be rather annoyed that I was missing sleep, but these days I find myself celebrating the small victories. I feel like “Yes! They are moving. Praise God!”

It was determined this week that we most likely have Selective Interuterine Growth Restriction (SIUGR). Our small son, Aaron, does not have the access to the placenta that, James (our “normal" guy) has. Therefore he does not receive as much nourishment. In extreme cases, the smaller twin dies in-utero before the babies can be safely delivered. Since I have one placenta (many identical twins share the placenta), the boys share many veins that connect the two of them. Historically as the smaller baby develops his cord blood flow generally slows, reverses or stops as the babies grow older. If our case becomes extreme, we have been told that if Aaron passes away, then James will most likely die as well or have severe neurological damage. This is due to the shared vasculature that connects the boys’ blood supply. If one passed away, it leaves the healthy twin to pump blood for two babies. At least this is my understanding, there could be more or less to this.

We had two ultrasounds this week. I will tell you about the second (which occurred on Friday) as the results were the same as the first, but my counseling was more hopeful with the second physician. Aaron, our smaller son, was moving up a storm and producing more amniotic fluid than ever (even more than Tuesday). The amniotic fluid is a sign his kidneys are working and he is urinating. He does have “abnormal” cord blood flow. It may be due to his small size (I was told he looks about 17 weeks – I am 21 weeks along) or it may just be abnormal. Anyway, the victory we are clinging to is that he is currently a medical anomaly. Normally there is low movement to absent movement and low urine output before there is low cord blood flow. I was told our little guy is doing everything he can to survive and say I am fighting here. Our physician said that if this baby has compromised blood flow, you would know it!

Currently, our goal (which seems crazy under normal circumstances) is to make it as far as we can into the pregnancy before delivery (right now we are shooting for 28 weeks and hopefully farther). I am 21 weeks and Lord willing we will make it past 30 weeks. Our physician mentioned that it is possible to deliver James and then leave Aaron inside of me for a month or two. I have no idea if this will be a real option when the time comes, but it is hopeful that it may be a possibility.

Right now we are celebrating the small victories and hoping for more. I am very aware that the next ultrasound could bear bad news, but it doesn’t help to think about it. I am trying to enjoy our boys every day, even though they are inside of me. Aaron is much more active and aggressive than James. When we see them on ultrasound they are often punching each other. When we went to the specialist in Houston, James was sucking his thumb. Hannah is the greatest gift of distraction. She is walking and full of things to say, that we actually understand! At times I have cried out of fear and sadness and she has brought me a pacifier or done her first somersault. Frankly all of this has helped me appreciate life more. I appreciate Cory and our sweet girl more than ever. I am truly thankful to the Lord for both of them. Hannah brings us such joy. I have been appreciating things I have previously overlooked and receiving great joy from them. This week I am trying to commit our children to the Lord. They are gifts from Him (Ps. 127:3). This is easily done in the absence of fear. In fear, my tendency is to wrap my arms around whatever I fear; not commit it to God, and try to do what I can to fix it. I was lead to 1 Samuel; reading about Hannah and how she was barren for so long. When she conceived Samuel, she freely gave him over to the Lord, literally to Eli, to be a priest and not live with her as a normal child would. When she gave him to Samuel she said, “27 I prayed for this child, and the LORD has granted me what I asked of him. 28 So now I give him to the LORD. For his whole life he will be given over to the LORD." And he worshiped the LORD there (1 Samuel 1:27-28).

Our parents have been very supportive from a far and right here. My mother has been cleaning our house and watching Hannah. My parents have even taken her for a couple of nights so we could travel to Houston to see a specialist or specialist and so we can have some 'Cory and Laura time'. We have had people from church that we do not know or barely know bring us meals to help out.

Thank you for your prayers and encouragement. I find myself, a doer, in a time where I can only relax and let others help me. I cannot save my boys or insure their future, but I can pray and there is power in prayer to the Lord.