Day 89

Adios 2014. 

Day 88

Alex and Mabry had their eye exam this morning. Mabry is still stage 0 (negative) and Alex is still stage 1 (the least severe) for ROP. They will re-exam again in 2 weeks. Both babies have been tired all day and have not bottle fed since 6:00am, but they will see if they are up to it at 6:00pm.

Day 87

The nurse said Mabry is wide awake & ate her 9:00 am feeding in 20 minutes. Usually she is a slow eater, so this is big for her. Alex ate his entire 6am feeding but she tube fed him at 9 because therapy is coming at noon & she didn't want him to be tired. Both babies have physical therapy today and should have another eye exam this week. Plastic surgery team is supposed to come look at Mabry's nose as well.

Here's Alex mid sneeze.

Mabry resting.

Day 86

Day 84

Alex & Mabry are doing pretty well today. Alex is on 28% oxygen and ate his entire feeding at noon, but he didn't score well, so will be fed through the tube at 3pm. Mabry ate her entire 9am and noon feedings. She is still out of her hood. She has had some desats and does better laying on her belly. The doctors are keeping an eye on that to see if she needs to go back in the hood. Her nurse today said Mabry has not had desats for her though.

Merry Christmas

Thank you for your support and prayers

Day 82

Mabry is still out of her hood. She desats into the 80's ( should be 90-95) but corrects herself without the nurse having to give her oxygen. Both had their feedings increased today, Mabry to 50 ml  & Alex to 44ml.

I told the nurse about them cuddling on the boppy yesterday & asked her to please do this again today. I think it is good for them. We hardly heard any of their alarms go off yesterday while they laid together. They were together the entire time we were there, except while we held them to feed them.

Here's a pic of them cuddling.

Here is a pic of their vitals while cuddling. Alex is the big #s & Mabry's is the lower left. Green #s are heart rate & blue are oxygen saturation. They seemed to sync up.

Day 81

Alex is 5 pounds and Mabry is out of her hood! Hopefully she stays out. Alex's cpap is turned down to 6 & he is in the high 20s- low 30s on his oxygen. Also Alex finally got his new bed. Mabry has finished all her feedings today. Alex is getting to bottle feed on que now, not just twice a day. When we got to the hospital, they were cuddling together on a boppy. 

Day 80

Alex still has not reached 5 pounds, he is 4 lb 15oz. They increased his feedings to 42 ml every 3 hours, with fortifier and olive oil added. Mabry is eating 48ml every 3 hours with fortifier added, but no olive oil. She is 5lb 7.8oz. She is currently on 24-25% oxygen, but the air inside the hood reads 22%. So she is not far from not needing the hood anymore. She has finished 2 bottles today and Alex also finished his at 9:00 am, his only bottle feed so far today .

Mabry yesterday

Mom & Alex yesterday

Special visitor

Santa didn't forget all the babies in the Nicu.

Day 77

Both babies finished their noon feedings again. No changes were made to Alex's cpap settings and he is still at 4 lbs 15.9oz.
Many people have asked if the babies have to be a certain weight to come home. No, they do not have be any certain weight. They have to be taking all feedings by mouth, be gaining weight, be off oxygen support (technically Alex could come home on oxygen support, but Mabry can not because of her nose issue), & pass a car seat test.

More photos with Alex and Mabry

We got our photos back from the photographer last night. Here are a few more.

Day 76

Mabry and Alex both ate their entire bottle at their noon feeding & Alex also ate his entire feeding at 3:00am. If does well again at his next feeding, they may let him bottle feed more than twice a day, like Mabry. He has a blood gas in the morning, if it comes back good they may turn the cpap down to 6, currently on 7. Mabry weighs 5lb. 4.7oz and Alex is just a hair away from 5lbs, at 4lb 15.9oz.
I want to thank everyone for continued prayers, gifts, and just reaching out to tell us that you are still thinking about our family. And thanks for continuing to follow the blog after 76 days. We have had over 24,000 views. Mabry and Alex have came so far, but still have a long road ahead of them and we will continue to keep the blog updated.

Here is Dad feeding Mabry.

Day 75

Mabry is in a new bed again. Alex is still in the same old isolette. Mabry finished her whole bottle for the occupational therapist while I was visiting. Alex ate about 15ml, which is pretty good. Alex's cpap is on 7 & his oxygen is about 34. I held them both,separately, & got a quite a few smiles today. 

Mabry's new bed

Alex

Mabry looks a lot like Taylor here.

Day 74

Nurses and occupational therapy are still working with Alex & Mabry on their feedings. Sometimes they do pretty well and sometimes they will barely eat at all. Mabry weighs 5lb 2oz and Alex weighs 4lb 11.8oz. Both had their 3rd eye exam to check for ROP. ROP is classified in five stages, ranging from mild (stage I) to severe (stage V). Mabry is negative for ROP and Alex is Stage I. 

Stage I — Mildly abnormal blood vessel growth. Many children who develop stage I improve with no treatment and eventually develop normal vision. The disease resolves on its own without further progression.

They will continue to monitor every 2 weeks. A few weeks ago the doctor told us that ROP usually peaks around 34-36 weeks gestational age, which is where we are now.

Day 72

Mom & Dad visited today. Mabry weighs 5 lbs. Alex is still at 4 lbs 9 oz. After 72 days they are moving to new beds. They are very old fashioned looking to me & take up less space. We got here just in time for their feeding, so we each bottle fed one of them. We cuddled on Alex for almost 2 hours, & he seemed to enjoy it.

Mabry's new bed.

How's big sister doing?

Many thoughtful people have asked - how is big sister doing?   She's great!   A 34 week preemie herself, big sister just turned 1 year old (adjusted) on Thursday!  

Big sister is always bright eyed and happy, and is ready to start walking soon.   She is completly unaware of having a brother and sister and will meet them for the first time whenever they come home.   This will change her world, but she is well tempered and will learn to adapt and love little brother and sister.

Today she met Santa for the first time!

Day 70

Alex and Mabry are continuing to make progress on feeding from bottle. Mabry is bottle fed about every other feeding, she doesn't always finish the entire bottle, but sometimes she does. She is also starting to que when she is getting hungry. During the photo session last Sunday, she started rooting and even sucked on Alex's nose for a few seconds. Alex is bottle fed twice a day and is also doing well. They both get fortifier added to breast milk for extra protein & calories and Alex actually gets olive oil, too. Alex is catching up on weight; Mabry weighs 4 lbs 14.8 oz and Alex 4lbs 9.2 oz. He had a blood gas this morning, and his carbon dioxide was 52 (this is good). Here is another picture of Alex from Wednesday, he kept getting his arms out of his swaddle.

Photos with Alex and Mabry

Nicu day 68

Today Alex & Mabry would be 34 weeks gestation, which is when Taylor was born. She was 4 lbs. Surprisingly they are  now bigger than she was. It's hard to remember her ever being this small. Since Alex is off the ventilator & doesn't have the tube down his throat, he can cry now. It's so good to hear. Alex is outgrowing his hat & looks like a skater in a beanie today. Almost got a little smile here.

 

Mabry was wide awake for quite awhile, usually she sleeps & ignores me.

 

The nurse asked if either of them look like Taylor (picture below). I think both do a little.

Day 68

Mom is visting today.

In one week they will check them again for ROP (vision problems) and again two weeks after that.  They are checking to make sure the blood vessels grow in behind the retina and do not leak blood into the retina, which would cause scarring or retinal detachment, and require laser eye surgery to correct.   We haven't got any bad news yet, but they can't tell us more until next week and again 3 weeks from now.

Problems such as a cerebral palsy diagnosis can't be made for several months or even up to 2 years from now.    Right now we are just trying to understand developments as they occur and writing them here as they happen.   Thanks for your support.

Day 67

Alex's oxygen is at 30-32%, and has started his bottle feeds. Right now they bottle feed him twice a day. An occupational therapist works with each of them on their feeding once per day. When they bottle feed, they get a score based on how well they did. That score is used to determine when they will get their next try at bottle feeding. Last night Mabry didn't do well, so they gave her a break for the rest of the night. Alex weighs 4lb 3.6oz. & Mabry is 4lb. 12.4oz.

Day 66

Alex is acting wild this morning, sucking his thumb and pulling out his feeding tube.   He had a breathing treatment and the nurse said that will sometimes get babies wound up.  His oxygen level is at 30 (the eventual goal is 21). 

The doctor that we had been working with closely had her last day on rotation yesterday.  She stopped in to talk to us and commented on Alex's progress.  We both agreed we were happy that we made the decision not to risk giving Alex a second round of steroids. 
 
Mabry was given a trial out of her hood yesterday and she didn't like it so she is back under the oxygen hood today.

A professional photographer came yesterday to take pictures, so we will post those as soon as they send them to us.

Day 65

Alex & Mabry together for the first time since they were born.

Experiencing Joy and Grief after the Birth of a Premature Child

Most people experience the loss of someone or something of great importance several times during their lives . When grief is related to loss of an experience, not a death, how do we grieve or cope? 

micropreemie parents have a live baby, so there is no proof that anything was lost. 

Society expects joy at the birth of a child, so the loss that parents of a newborn premature baby feel is confusing. The final trimester of a pregnancy is a time for the mother to prepare physically and psychologically for the birth. Since prematurity interrupts the natural order of a pregnancy with little to no warning, we are left to be shocked and confused.

Parents of micro preemies are shocked, saddened, and angered that their child is suffering from a serious medical condition and may die. However, they are unable to experience the emotions of grief to their full extent because their baby is alive.  Parents do not know how to communicate and accept their grief because they were to be celebrating their child’s birth. This “ambiguous loss” results in a “joy-grief” contradiction.

Its hard for a parent of a micro preemie to truly understand what they are experiencing because of the complexity of being torn between mourning the loss of “normal” birth and celebrating a new life being brought into the world. Although the possibility of death and future health issues are present, we are unable to experience grief in its entirety because our children are alive.
 
This uncertainty of loss can make "ambiguous loss" one of the most distressful of all losses, leading to symptoms that are not only painful but often missed or misdiagnosed. People hunger for certainty, so perceiving a loss when a premature baby is alive makes parents “more prone to depression, anxiety, and relationship conflicts”

Because loss is confusing and people do not know how to make sense of the situation, they cannot problem solve. Preemie parents have difficulty identifying a problem because of the certainty of knowing their baby is alive, yet the uncertainty of the health and future of the child. The parents cannot immediately rationalize why they are grieving.

Micro preemie parents are unable to assume the expected role of parent to a newborn after the premature birth due to the lack of attachment to their preemie, because of the NICU technology.

People who are experiencing ambiguous loss are denied symbolic rituals, such as funerals, that ordinarily support a loss. When a new baby is born, parents are typically showered with cards, congratulations, visits from family and friends and a baby shower. The joy-grief dialectic complicates communication with family and friends. Family and friends do not know whether to react to the joy or grief involved.  We are fortunate to have people who are supporting us and helping us though this difficult time.

Since the loss is ambiguous, it continues and the relentless uncertainty makes people physically and emotionally exhausted. People cannot start the grieving process because the loss really is not one; preemie parents both celebrate the birth and grieve the loss of a full-term pregnancy, not a “real” loss of a child., for the grieving is experiencing an unrecognized, internal loss that is difficult to communicate.

Few people can deal with persistent ambiguity for long because the stress is overwhelming. Ambiguous loss is devastating and can have lasting traumatic effects.  But, with effective communication, support, and resilience people can use the experience to learn how to live in difficult circumstances throughout life, balancing the ability to grieve what was lost with the recognition of what is still possible.  “Ambiguity can make people less dependent on stability and more comfortable with spontaneity and change.... With ambiguous loss, the task is to let go, to risk moving forward, even when we do not know exactly where we are going”

I want to take this moment to give a special thanks to those who, after 60+ days, are still reading this blog and thank you to everyone who has helped us out along the way.   You are appreciated.

Day 63

Alex did well overnight. He didn't have any apnea episodes & only desated when his nasal cannula prongs came out. He had a decent blood gas this morning, carbon dioxide was 62. They have increased his feedings, but haven't made rounds yet, so not sure if they will make any other changes to his cpap settings. His is still at 35% oxygen. Mabry is doing great at feeding. She finished 2 full feedings by bottle.

We are visiting on Sunday. The Footprints Program at the hospital has arranged for a photographer to come and take pictures of us and the babies.

Day 62

Alex and Mabry are 2 months old today, adjusted age -7 weeks. Babies who are born prematurely often have two ages:Chronological age is the age of the baby from the day of birth -- the number of days, weeks, or years old the baby is. Adjusted age is the age of the baby based on his due date. Healthcare providers may use this age when they evaluate the baby's growth and development. 

The big news today is...Alex is off the ventilator! We were told Sunday that this was coming, but it has been postponed several days. He was extubated today and put on bubble CPAP. He is currently on a level 8 and 35% oxygen. The nurse said he looks good & is doing well. The next step will be weening from CPAP.

Only other change today is Mabry's feedings were increased.

Day 61

Mabry has a new hood & she is doing good at eating from a bottle. Alex's rate is down to 18 and he is on 35% oxygen, so far he is tolerating it well. They are hoping he has a good blood gas in the morning.

Day 60

No changes today. Mabry weighs 4lbs 2.1oz and Alex 3lb 13.2oz. Alex & Mabry will both have their 2nd eye exam today to check for ROP.

What is Retinopathy of Prematurity (ROP)?
Retinopathy of prematurity, also called ROP, is a disease that affects the retina of the eye. ROP affects the blood vessels on the retina in a preemie's eyes, and is one of the leading causes of childhood blindness. During pregnancy, the blood vessels in a baby's eyes begin to develop around 16 weeks gestation. By about the 34th week of pregnancy, the blood vessels in the eye are well developed enough that the retina has a good blood supply.

When babies are born early, the blood vessels on the retina are not fully developed. After birth, the vessels may begin to grow so quickly that their growth damages the retina. Retinopathy of prematurity (ROP) is the name for the improper growth of the blood vessels on the retina and the damage caused by that growth.

In most preemies who develop ROP, the growth of the retinal blood vessels will slow down on its own, and vision will develop normally. Some premature babies, though, develop severe ROP.

Stages of ROP

Retinopathy of prematurity is classified according to different stages. Higher stages of ROP are more severe, and more likely to cause blindness or long-term vision problems. Lower stages of ROP are less severe; most children with stage I and II ROP will improve without treatment and will have normal vision.

• Stage 1: Mildly abnormal growth of retinal vessels. Usually gets better without any treatment and has no long-term effects.
• Stage 2: Growth of retinal vessels is moderately abnormal. Usually gets better without any treatment and has no long-term effects.
• Stage 3: Growth of retinal vessels is severely abnormal. Infants with stage 3 ROP may require treatment for ROP and have a higher risk of long-term vision problems. Infants with plus disease, a sign that ROP is advancing quickly, usually require treatment at this stage.
• Stage 4: Partial retinal detachment. Usually requires treatment and may lead to long-term vision problems or blindness.
• Stage 5: Complete retinal detachment. Requires treatment and may lead to long-term vision problems or blindness.

  Diagnosing ROP

  Retinopathy of prematurity is diagnosed during an eye exam. To prepare for the exam, eye drops are used to dilate the baby's pupils. During the exam, an ophthalmologist will look carefully at the retina to evaluate whether the vessels are growing appropriately and, if not, what part of the retina is showing signs of trouble.
  Not all premature babies will need an exam to test for ROP. Hospitals vary in which babies are screened for ROP, but most babies born before 31 weeks gestation will have at least one exam to test for ROP. If the exam is inconclusive or the baby's eyes show signs of ROP, then follow-up exams will be scheduled periodically.

  Treating ROP

  Most cases of retinopathy of prematurity will get better on their own and require no treatment.
  In stage 3 ROP and higher, treatment may be needed to stop the abnormal growth of blood vessels on the retina or to correct a retinal detachment. Types of treatment include cryotherapy, laser therapy, and retinal surgeries.
  • Cryotherapy: Cryotherapy uses cold temperatures to freeze parts of the retina that are affected by ROP, which stops the overgrowth of unhealthy blood vessels in the eye.
  • Laser therapy: Like cryotherapy, laser therapy is used to stop the overgrowth of unhealthy vessels on the retina. A laser is used to make small burns on the parts of the retina affected by ROP. Laser therapy usually has better results than cryotherapy and is used more often, but cryotherapy may still be used in certain cases. In order to preserve central vision, some peripheral vision may be lost with both cryotherapy and laser treatment.
  • Retinal surgeries: In stage 4 and 5 retinopathy of prematurity, the retina has begun to detach or is fully detached from the eye. A partial retinal detachment may get better on its own, or may require surgery. A completely detached retina almost always requires surgery.

  Long Term Effects of ROP

  Up to 90% of babies born before 31 weeks will develop some form of ROP. Most cases of ROP are mild and have no long-term consequences. Children who suffered from ROP as infants may be nearsighted, or may have strabismus or amblyopia .
  In cases of severe ROP, total vision loss may occur. Hospitals are much better at diagnosing and treating ROP before it causes blindness, but severe cases of ROP may still cause vision loss.

  Oxygen Use and ROP

  Supplemental oxygen is often used with respiratory support to help keep a baby's bloodoxygen saturation at healthy levels. Adults and term infants need to keep oxygen saturations in the high 90s to stay healthy, but premature babies are different.
  When premature baby care first became technologically possible, doctors and nurses worked hard to keep preemies' oxygen saturation at what would be a healthy level for adults. After much study, it was discovered that babies whose oxygen saturation was kept high had a much greater risk of developing ROP. Doctors and nurses can safely wean oxygen levels to keep oxygen saturation as low as 83% in preemies, helping to prevent ROP.

Day 59

Yesterday while we were visiting, Mabry was fed from a bottle for the first time, she ate 7ml. They also tried this again at 3am, and will again at 3pm today. They also have her isolette open (still under hood), and so far she has been able to maintain her temperature. She is swaddled up pretty good though. These are milestones in the preemie world. Alex's blood gas this morning was a little elevated, carbon dioxide was a 67, so the nurse didn't know if the doctors would change anything for him today.

Two nurses have signed up to be primary nurses for Alex & Mabry. This means if either one of them is on duty, they will care for the twins. This will be much easier for us, as it is hard to learn all their names, and hopefully good for the babies as well since we can't be there all the time, maybe they will at least have some other familiar faces.