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.