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.