Micro Preemies and Brain Bleeds

According to the March of Dime 534,000 babies are born premature in the United States each year. Babies born under 35 weeks gestation are considered premature. While the " preemie club" from a medical perspective include larger gestation preemies there seems to be a " sub" club. One that not many are a part of. Each year only 50,000 micro-preemies are born in the United States. A micro-preemie is generally considered to be born under 3 pounds and before 29 weeks gestation.

The later gestation preemies are at risk for delays and other "preemie" issues and it is a good idea as the parent of these later gestation preemies to be aware and be proactive in their development.

Sometimes, the members of the micro preemie club can be pretty harsh and not welcoming to the older gestation preemies. ( I know I am guilty) because as a 5 pound preemie and a 1 pound preemie the issues are far more extreme. Meaning the chance of something being "wrong" is less likely and the chances of US having delays is much greater, the ride of prematurity longer and the effects more lasting we tend to have bitter pants!

Long term preemie issues can be tough and it can also be a lonely place. One of the reasons is because those with Micro preemies do get grouped into the later group and everyone asks "well they are fine now right?" question. Well maybe at 34 weeks our kiddos are good to go and "catch up by 2" but at 25 weeks there are RARELY a preemie that has no lingering effects.

If you are in the Micro preemie club the dreaded words is brain bleed. Dreaded, because no one wants to know that inside their growing babies brain is a bleed, a bleed that causes damage. That bleed will leave your child with an uncertain future.

Brain bleeds are the largest cause for brain damage in a child. It is also the reason behind MANY Cerebral palsy diagnosis. For us, that brain bleed has left us with LOTS of days and weeks and months of an uncertain future.

Tyler was diagnosed at 24 hours old with a grade 3 and 4 IVH. I am not certain on the grade at the very start but the end result was a very very bad hemorrhage. Grade 1 and 2 leave usually no lasting effects and if they are lasting they are very minimal. But grade 3 and 4 touch brain tissues and leave a damaging hole in its path.

His heart defect known as a Patent ductus arteriosis needed to be closed to help regulate the blood pressure in his body. The lower the blood pressure the less pressure on his already damaged brain.

At a small 1 pound 11 ounces and just a few days old Tyler underwent heart surgery. It was a surgery to place a titanium clasp on his defect to help close it off. The surgery was done at his bedside. By the time I walked back to our room and had a little breakfast Dallas was already back telling me that they were done and Tyler did pretty well.

His bleed would be the cause of many heartaches and sadness in the coming years but it would pose many health risks as well. His bleed was the result of his hydrocephalus. Having hydrocephalus and draining out fluid in the NICU was the cause of his Craniosynostosis and now at 4 his hard time walking and cerebral palsy and lack of speech is a direct result from that faithful day we were told he had a brain bleed.

One thing we do know is that we are one of the lucky ones where we did get to see our child walk. While getting all of the information we could in the NICU we were told of the possibility that Tyler would be in a wheelchair. While this is still a possibility ( he doesn't have the greatest ability to be stable all lone or without assistance) it hasn't been the case for Tyler yet. He is doing things that most kids with this degree of damage.

We are very proud of him. "Most" Days he works really hard at therapy. He is wonderful at being a kid. He is generally happy, loving and I love him SO much.

Our first hurdle

Many hurdles come up when you are dealing with a Micropreemie. Tyler was no exception to the rule. Our first of many unexpected diagnosis' came withing the first 24-72 hours. Withing 24 hours Tyler was diagnosed with Brain bleeds during a routine head ultrasound . A very common occurrence in small micro preemies and in my own personal experience in preemie where no advance knowledge or warning of their births. (I have found that those who knew and were able to get steroids many of the kids escaped this diagnosis.)

A brain bleed is also known as a Inter ventricular Hemorrhage or IVH. They are ranked on a scale of 1-4. 1 is the least problematic and 4 is the worst. ( Although 1 may be problematic any degree of bleeding CAN cause issues later on)

Tyler was diagnosed with a grade 3 and a grade 4.

We were told of possible Cystic changes, meaning there were a few spots in his brain that we either damaged or gone because of the bleeds. Tyler also developed hydrocephalus, a common side effect from the damage/bleed. This was not diagnosed for several weeks after his birth.

Our first line of defense to get him stabilized was to fix his PDA or Patent Ductus Arteriosis. It is a congenital heart defect that is very common in preemies. Most close on their own or with the help of medication. Due to the bleeding in Tyler's Brain surgery was needed.

So on day 3 of our Journey Tyler was needing heart surgery.

This marked our first surgery, and the first of many blessings and prayers.

( I will post about bleeds and stuff in a later post.)

PDA's are VERY common but serious none the less. PDA's are considered a Congenital heart defect. Medications are used to fixed it but when that is not an option surgery is performed.

Indications that surgery is needed include ( but are not limited to:)

The type and timing of surgical repair depends on the child's condition and the type and severity of heart defects.

In general, symptoms that indicate that surgery is needed are:

• difficulty breathing because the lungs are wet, congested, or fluid-filled (congestive heart failure)
• problems with heart rate or rhythm (arrhythmias)
• excessive work load on heart that interferes with breathing, feeding, or sleeping

Because Tyler was so little and it was so critical for him to be able to get better faster and with the IVH, fixing the PDA was VERY important.

The surgery was done at his bedside. It is not considered "open heart" surgery because they don't open the chest cavity. But they do go inside and repair the heart with a titanium clip.

I remember going in that morning and seeing him and touching him and wondering and hoping he would be OK. Praying that someone bigger, higher and more important was watching over us.

The surgery didn't take very long. I had barely gotten back to my room and ate breakfast before they were done.

He did very well.

He was stable.

First hurdle... first major spiral downward.

More Preemie!!

One of the first hurdles that we had to overcome was a PDA, or Patent Ductus Arteriosus. He had surgery September 24th. It was the first of many. This type of defect is very common in preemies. It was the first of many Downs that Ty would have.( He had many ups to but the first couple of days were touch and go...)


Just one of those common preemie experiences!!!

To add to the long list of preemie things you will get this month .. Here are a few do's and don't of NICU parenting....... We had these posted on Ty's incubator. I thought I would share so you would get an insight into helping a preemie mom or dad.( Most are for the Nurses and NICU workers, but some work for everyone!!)

1. Ask me what I want to be called.I may or may not want to be called "mom." I would like to be called by my first name.

2. Send me a Polaroid of my baby when I can't get out of bed because I have had a C-section OR take pictures when I am not able to be there. For Tyler we had a disposable camera in his drawer all the time. LDS NICU also took pictures of them when we were gone.

3. When referring to my baby, please don't call him "your baby" (as if he is your baby) or "the baby." He is your patient, but he is my baby. The best possible way to refer to my baby is by calling him by his first name. ( this was huge. The Nurses would get use to having Ty.. he was still MINE!!)

4.Give me a tour of the nursery soon after I arrive so I know where the pumping room is, where to store breast milk, the lounge, bathroom, etc. (Remember if I am groggy or having a difficult time coping, I might need a second tour later.)

5. If you are the nurse caring for my baby, acknowledge me when I come in the room so I know who you are.

And some DON'Ts....

1.Don't Call me "Mom." Please ask me what I would prefer to be called. ( I didn't care so much about this one. I had Primary nurses that I just loved and they knew me after a day or two...but for some .. I am sure it was an issue.)

2.Don't Move the baby without telling me ahead of time, or at least meeting me at the door. ( when you get into the habit of having them in one spot going in and seeing your baby not in your spot is a little overwhelming. Ty was "kicked" out of his corner it was REALLY kinda nerve wrecking. Change during that time was SO hard.

Oh and Jenn.. I am glad you got our SPOT!!!

3.Don't Tell me how I should be feeling or that I "need to be patient." Even now hearing that it is "normal" is hard to hear. It is something we are dealing with. Not you. You have NO idea how I feel.

4.Don't dismiss or diminish my concerns. I am not used to seeing my baby have bradycardias or color changes. Having a sick baby was so different. You can't touch them or love on them like a healthy baby. Holding took a long time and he was sick. On some days he was sicker than others but he is my baby.

5. Don't assume that I don't care for or love my baby if I don't touch him. I may be very scared or overwhelmed. The first time I saw Ty I wanted to touch him but I remember being told not to rub. There were days when I was told not to touch him. But there were days I couldn't touch him. I was sad. I was scared. He was so precious but still so sick.