Showing posts with label premature baby. Show all posts
Showing posts with label premature baby. Show all posts

Tuesday, November 8, 2011

World Prematurity Day: How You Can Help

November is Prematurity Awareness Month, and November 17 marks World Prematurity Day. Did you know that in the United States, 1 in 8 babies are born prematurely? World-wide, an estimated 13 million babies are born too soon. With statistic like these, chances are you will know somebody who delivers a premature baby in your lifetime. It may be a family member, or a friend of a friend. Maybe its one of your Facebook acquaintances or a co-worker. No matter who it is, I can almost guarantee that the parents are dealing with feelings of fear and helplessness. But as helpless as these parents may feel, I can assure you that as a friend, family member, aquaintance or even a complete stranger, there is something that YOU can do to help preemie parents in their time of need. Below are some suggestions:

Cook meals that can be frozen and reheated. Parents that have a child in the NICU literally have not a moment to spare, as most of their free time is spent at the hospital. Being able to come home late, heat up dinner and crash makes life a little easier. Any household chores you can do for a family with a preemie is great too, whether its cutting their grass or doing a load of laundry.

If the family has other children, offer to babysit. Lain and I did not have to worry about this issue, as Lea was our first. But I can only imagine that having other children with one in the hospital can make you absolutely nuts; especially since children are not allowed to visit the NICU.

Be supportive, but not overly positive. Although the phrase "It's going to be okay," seems to be the go-to saying to make a preemie parent feel better, I can attest to the fact that this phrase always sent a tinge of frustration through me. You don't really know that all will be okay, although we know that is what you hope for. Instead, I'd suggest something like, "Hey, this situation sucks, but I want you to know that you have my support, and that I've been praying for God to keep your baby healthy." Acknowledging what the parents are going through and their fears for their baby, and praying that their fears are lifted is the most helpful thing you can do.

Do your homework. The more knowledgeable you are about prematurity, the more you can easily communicate with and understand when a preemie parent gives an update. There are tons of fabulous resources for you to learn more about preemies. Click here for a list of resources.

Let us vent. Sometimes, as preemie parents, we'll just want to talk. cry. yell. whatever... Just be there to listen, even if we repeat ourselves. Believe me, it helps.

Inquire about visitation. If the parents want visitors, make sure to plan your visit in advance. Just "showing up" can take away valuable time that the parents are spending with their child, as no more than two people are allowed in the NICU at a time. Don't forget, while our baby may be tiny, we are still very proud parents, and we want to show our little bundle off just like any other parent... we just need a head's up!

If you can knit, sew or just like to shop, you can donate preemie clothing, hats and booties to your local NICU, and the nurses will give them out. I will never forget one day walking in to see Lea, my eyes swollen and red, my heart heavy.... and finding two beautiful, doll-sized dresses that had been hand made by a very generous seamstress. Trying those dresses on my girl was a step towards normalacy. It completely brightened my day, and I remember leaving with a smile on my face.

 Gifts, cards and words of encouragement are always welcome. When Lea was in the NICU, we had loads of support from friends and family. Gifts were literally left at our doorstep for Lea. Its funny how a tiny pair of shoes, or a sweet picture frame can really lift your spirits as a preemie parent. And even more-so, knowing that people care helps you feel a little less isolated. Anything that lets the parents know that they have your support helps!

Send a NICU care package. Hand sanitizer and moisturizer, snacks for long hospital visits, restaurant gift cards, journals, and disposable cameras to be left at the baby's bedside are all great suggestions to include in your package.

Let us be germ freaks. Yes, germ freaks. If we ask if your hands are clean, don't be offended. And if you're a smoker, don't be surprised if you're not invited for a visit. We are looking out for what is best for our child -- you understand.

If you are a preemie parent, use the knowledge and wisdom gained during your baby's stay in the NICU to help others. I have been blessed to meet some amazing preemie mothers through my experience. There is no better feeling than being able to relate to another preemie parent; we share a very special bond.

And lastly, simply pray. Prayer is a biggie. Praying for these families is probably the most beneficial act you can do for them. God has His way of bringing comfort to those in distress.


So if ever you find yourself able to help out a parent of a premature baby, I hope you find this list helpful. Know that any small gesture is greatly appreciated and never forgotten.

"As you grow older, you will discover that you have two hands, 
one for helping yourself, the other for helping others."
- Audrey Hepburn

Tuesday, March 8, 2011

A Homecoming Fit For a Princess

After 64 long days in the NICU, Lea finally came home today weighing a whopping 4 pounds and 15 ounces and at the gestational age of 38 weeks and 4 days. In true princess fashion, she chose to arrive home on the most extravagant holiday in New Orleans, Mardi Gras! While others crowded the streets to watch the parades this "Fat Tuesday," we proudly paraded our baby girl home for the first time in nine weeks. The term "I got the baby!" had a completely different meaning this holiday. No Mardi Gras has ever been so memorable.


Happy Mardi Gras! 4 lbs, 15 oz

We'd like to thank everyone who has said prayers, sent well-wishes and gifts, cooked us meals and supported us through this amazing journey. You have no idea how much each of your kind words and thoughtful gestures helped us cope. I have been blessed to have witnessed the beauty in others and the power of God. Because of this experience, I am forever changed. My family is forever stronger. My faith is as strong as its ever been.

As I sit here typing this, Lea is wrapped up in her moby wrap, against my chest skin-to-skin. She no longer has to listen to the loud dings of monitors. Even better, I no longer have to fall asleep at night wondering if she's crying or if she's fast asleep. Tonight, for the first night, she will sleep in the bassinet that has sat empty for the past few weeks beside my bed. Now I can watch her fall asleep, and comfort her if she cries. Although she is still hooked up to a breathing monitor, life finally feels normal. We are finally a family, and we're ready to begin our new journey!

Happy Mardi Gras everyone!
View a slide show of Lea's time spent in the NICU here

On our way home...




Thursday, February 17, 2011

Lea Celeste Gorman

I found out my husband Lain and I were expecting in July of 2010. What a surprise! I had just switched jobs, we were slowly renovating our home and the last thing on my mind was having a baby. God had a plan for us, however.

Surprise immediately turned to excitement, as we shared our news with family and friends. My parents were elated over the thought of their first grandbaby. Baby fever set in quickly, and I soon became obsessed with looking up baby names and the thought of creating the perfect nursery.


We opted to get a quad screen (a maternal blood screening test that looks for four specific substances: AFP hCG, Estriol and Inhibin-A) around the 16th week of pregnancy. A few days went by when I got a call from my doctor saying the results of my test came back positive, and that I was at risk of carrying a baby with a genetic disorder. I was then sent to a specialist, who let me know that my placenta looked “funky,” and that I’d probably not carry the baby to term. At this point, it was too early to know anything, so we would just have to wait and see. He was able to rule out things such as spinal bifida and down syndrome, yet he still has no answer to what could be wrong.

A few months passed, and I continued to see the specialist. Finally, at 27 weeks pregnant, he broke the news that my baby was not receiving enough blood from my placenta, and her size was in the 16th percentile for her gestational age. He explained to me that every day we can hold off on delivering the baby, the better chance she would have for survival.

Two weeks later, her size had dropped down to the 10th percentile. It was time for her to come out (via C-section). Unfortunately, my spinal tap ceased to take full effect, and I could still feel everything from about the knees down, so I was put to sleep immediately. The use of anesthesia meant that Lain was not allowed in the delivery room. I remember the last five seconds before everything went black: All I could think is how much I wanted my husband by my side.

Everything after my C-Section is kind of a blur. If you’ve even been put under anesthesia, you know you wake up feeling like and acting like a hot mess. I remember being wheeled into the NICU on my hospital bed to see Lea for the first time. I remember her being tiny. I changed her diaper. It felt like a dream - I didn't even cry. 

1/4/11 • Lea Celeste Gorman • 1 lb. 14 oz.
Following my C-Section, my blood pressure was extremely high due to eclampsia, so I was put on some medicine that made me feel even groggier than before. Everyone kept stressing how important it was for me to get some sleep, but I couldn’t stop thinking about my girl. It was a long night, and I was not moved to my recovery room until the next day. When I was finally settled in, Lain and I walked down the hall to the NICU. Since he had been many times since Lea was born, he showed me how to call from the red telephone in the hallway. Then after a loud buzz, Lain pushed the door open and we went in, where he showed me the hand washing routine I would later become very familiar with.

Walking across the room towards Lea's bed was terrifying. The NICU looked so different from the short time I had spent in it before. This time, I noticed the row of blinking monitors. Alarms were dinging, and nurses were everywhere. We walked up to see the tiniest baby I had ever seen before. She was skinny with a big respirator tube coming out of her mouth and an oxygen tube in her nose. She looked like she was trying to cry, although she could not produce any sound. Standing over her were two of the nurses. It was overwhelming, and I then realized I had not prepared myself for this. Then that out-of-body experience that people sometimes talk about started to take effect. I could hear a cry - no, more like a wail. It was loud. I then realized the crying was coming from me. Another heavy cry. Then another. I could not control it. I seemed to be in slow motion, and thinking back, I'm pretty sure I was having a panic attack mixed with a nervous breakdown. Lain just held me and cried silently. I did my best to get myself together, but then Lea's respiratory alarm began to go off. I watch it go from blinking yellow… to blinking red, and that's when Lain began pushing me towards the exit. As the nurses began working on Lea, Lain whispered, "Let's come back later." I was frozen, so I just followed. I realize now that Lain didn't want me to see all of that in the state that I was in.

The next couple of days were extremely rough. I cried every time I entered the NICU. My eyes had literally almost swollen shut. To see my baby looking so small and so fragile was agonizing. I could do nothing to help her. All I could do was watch her try to cry and reach out in front of her with her tiny arms. I would have given anything to just pick her up and hold her tight. However, all I could do was stick my hand through the tiny porthole on the side of her isolette. These were by far the worst few days. Even though I had tons of visits from family and friends, I had never felt so alone in my life. I felt as if no one understood what I was going through. 





The day that I was discharged from the hospital without my baby was also one of the hardest days of all. Thankfully, things got a lot better. As the days passed, I cried less. I still cried, but just less. I began to get familiar with the monitors. I started to distinguish the meaning of each ding or buzz I heard. I learned to aggressively rub Lea's back when her oxygen level dropped due to bradycardia. I learned all the signs of over-stimulation in preemies. I adjusted Lea’s oxygen when instructed to by the NICU staff. I also started to get to know the amazing medical team that was taking care of our girl. They were so kind to us.

Since I could not drive after my C-section, my mom would pick me up every morning and bring me to the NICU. Without her that first week, I don't know what I would have done. No matter how old you are, sometimes you just need your momma – and I really did. Our routine made the situation bearable. She'd sit there while I held my girl as long as I wanted. Over the first few weeks, people brought us food, sent gifts for Lea and sent the sweetest messages of encouragement. People can be so kind :) 


People always say things happen for a reason, or that there is always something to be learned in any given situation. Apparently I needed to learn how to pray. And I did. I began praying each time I pumped, which was about eight times a day. At first, I would just pray for Lea. Later, I added prayers for Lain. From there, my list began to grow. I was praying for anyone I knew had a problem – and even if they didn’t have a problem. It got to the point where I actually had to write out a prayer list in my notebook because my list was so long. And as I prayed for others, I realized the power of prayer. Praying brought me closer to God, and close to God is where I wanted to be. As I prayed for others, I noticed my anxiety was alleviated tremendously. I will admit, I did not pray often before I had Lea. Now, I pray every day. Twice a day. Even more usually... Praying has become a routine before Lain and I fall asleep at night, and as we ride home from visiting the hospital.

The next few weeks were full of milestones. Lea off the respirator. Lea's first cry. Lea's first smile. Lea reaching two pounds! Lea off the oxygen. (Lea back on the oxygen. Two steps forward, one step back.) God had truly blessed me with one determined little fighter. She was so strong... I pulled all my strength from her. The NICU began to feel less like a hospital, and more like home. The nurses became our friends and supporters.



I went back to work after four weeks, and it felt good to partially return to the real world. I missed my time with Lea, though. I spent my entire evenings (minus the hour and a half block in which the NICU closed for a shift change) with my girl. I would hold her, change her diaper, give her a bottle, and read her books. I’d rearrange and reorganize the items in her isolette drawers just to make myself feel useful.

Happy 1 Month Birthday! - Video

There was another lesson to be learned from this experience: PATIENCE.

There were several times when we were turned away at the NICU door because one of the babies were having a procedure done, or there was a new admit.  To be so close to my child, but not be able to see her was excruciating for me. We learned to call before visiting, to be sure we’d be let in. There were a couple of days when I only saw Lea for about an hour or two. Those were the days I had to pray the hardest for patience. 

I remember the day she finally weighed three pounds. What a milestone! From there, Lea started to really pack on the ounces. It was the most beautiful experience to watch her grow. It seemed her fingers became little fat sausages over night. He double chin was absolutely adorable. And finally, after about six weeks, she finally had two sweet little but cheeks! (Yes, I know… I am totally going to be one of those moms who embarrass the heck out of their child.)



 
 Looking back thus far, we went from being the most critical case in the NICU, to one of the healthiest babies in the unit. As new parents would come in for the first time to see their babies, my heart broke for them, remembering the emotions I had just recently been through. I now pray for all of the babies nightly, especially for one very special little guy who had been our NICU neighbor at one point. I also thank God for the nurses, and pray that he’ll keep their minds nourished and alert so that they’ll be able to take the best care of all of the babies.

A month and a half has passed since Lea entered the world. She looks like a completely different baby. Her gestational age is now 36 weeks. She smiles a lot! They say its gas, but I think otherwise ;) She is now wearing all of her preemie clothes – which probably will not fit her too much longer! She is three ounces away from being four pounds. Hopefully we will be able to take her home very soon.

Thank you God, for entrusting me with this precious gift. I promise I will not let you down.