Prayers for a New Preemie Family

Last night, I found out that my sister’s best friend and college roommate’s nephew was born early and needed prayers. Ryan was born at almost 29 weeks gestation while his parents were out of town about 6 hours from home.

This family could use all the prayers and good thoughts anyone can provide. I know how hard it was dealing with early labor and the NICU while 20 minutes from home. I can’t imagine what it’s like to experience it hours away from your family, friends, and home. I’m sure the Ronald McDonald House is a blessing for them, but it’s not the same as being able to be at home while recovering and trying to parent your baby.

Little fighter Ryan is fighting some complications of prematurity right now, early in his NICU stay. I know exactly how lucky we have been. I thank God everyday that Drake didn’t suffer any bleeds or have any respiratory regression issues. He has his own battles that he fought and is still fighting. But I know how it could have been and how precious every week you remain pregnant is.

God, please watch over precious new baby Ryan and his mommy and daddy. Help him to fight through his battles and get strong enough for his homecoming. Watch over all preemies and their parents, Lord. Give them the hope of your loving embrace. Amen.

 

 

The Best Laid Plans

I was really moved by Jenna Von Oy’s birth story she posted on her People.com blog Monday. While her baby was born at 37 weeks, she captured the feelings of a birth plan gone awry, dealing with pregnancy complications, and dealing with being separated from your baby in those first precious hours after birth so well. I was in tears remembering the first days of my son’s birth and the delay we had in touching or holding him.

From the early days of my pregnancy, I knew I had dealt with some spotting issues and low end normal progesterone levels as well as high blood pressure controlled with meds and then finally in early 2nd tri, gestational diabetes. I had planned early on for possible bed rest. I scheduled my birth class for January even though I was due in April. All the other moms in my class were due in February or early March. I scheduled my baby shower for early February. I had a feeling as the weeks crept by one of my complications was going to cause the dreaded boredom of bedrest.

I was so tired all the time, and I never felt the healthy vitality that some women seem to have during pregnancy. I never felt like I glowed.

I have so much guilt from the weekend before Drake’s early Monday birth. I went out to dinner and to an event with my girl friends on Friday night. I washed the walls of our office (severe nesting apparently) on Saturday. I went over and watched movies with a friend on Sunday. I felt restless during that final weekend of my pregnancy, but I never felt like I was in LABOR.

I will never forget the feeling of my water breaking. It felt like it should have been the audible pop of a champagne bottle being uncorked. *POP*

And my world changed.  My new normal was starting before I even realized fully what would happen.

I  pretty much knew I could possibly have to have a c-section. At my first meeting with my perinatologist after the diabetes diagnosis, he warned me that an induction would be scheduled for 38 weeks no  matter what. Premature birth never entered my radar.

I was wheeled by Drake’s isolette in the NICU on my way from recovery to my room. I didn’t get to touch him until the next day. Or hold him until another 4 days had passed.

My first meltdown occurred when my husband and some of the grandparents went to visit Drake on the 2nd day while I pumped milk. I heard the words something is wrong with his foot and I lost it. I was sore, tired, emotionally battered and now something was WRONG with my infant I hadn’t held yet, and I wasn’t the first to even HEAR about it.

Dark days.

 

 

 

 

Smile

Tomorrow Drake will be 4 months old, 7 weeks adjusted. Lately, I have been longing to see him smile. I know that all babies do things in their own time and that is doubly, triple-y true for preemies, but I want to see him smile at me.

I know another new mom. She was due 3 days after me and had her son at term. I think she’s awesome and her little boy adorable, and she’s had her own things to deal with. But…it’s hard to watch what could have been so often.

To just have “new mommy” worries, and not medical ones. I’m so scared that I’ll miss something with his hernia, or not feed him just right and cause another reflux-i-sode. Or that I’ll use his braces incorrectly and he’ll have to start his clubfoot treatment again.

I want to let go of the feelings of doubt and guilt from going into labor so early. I didn’t have any infections or signs of pre-eclampsia. Why did my water randomly break. Maybe if I just had the answer?

So smile for Mama, little one. Each day that I spend with you makes me forget the guilt, the worry, and the fear. Each day I watch you fight your battles so effortlessly and with such a patient nature for a wee man makes me fight to be happy and find that new normal for you.

Happy Father’s Day

Every time a child is born, so is a father. But it takes someone extra special to be a Daddy. My husband and our 16 week old 30 weeker have their own rituals already. From birth he has recognized his father’s voice and followed it or reacted. It warms my heart.

We’ve planned a few special things for my husband’s first Father’s Day. I hope he enjoys his day and it’s as awesome as he is. Drake’s daddy has his own memories from his birth that we have just recently started discussing. Like how my son’s first cries and breaths were actually coaxed along by my husband. Things that I didn’t know because I was so out of it on Mag and anesthesia and lack of sleep.

Drake’s Daddy thinks his son is awesome. I’m pretty sure the feeling is mutual. Here is one of my favorites of our NICU shots, Drake holding his Daddy’s finger as he was held by him for the first time.

Melts my heart

The Journey

Now our real journey begins. Drake was fitted for his Mitchell shoes with Ponseti bar brace today. This has been the fussiest I have ever seen my quiet preemie.

I knew that the coming years of getting this corrected would probably be a bit of a struggle. I’m so thankful that this is a correctable issue, but I’m so sad that it’s one Drake will be fighting for the next 5 years.

So far today, Mommy has

1. Inserted the bar backwards and cried as my baby cried

2. Put the shoes on the wrong feet

3. Felt my son snuggle up to me for comfort despite all I’ve put him through

And number 3. That’s the reason all of this is possible.

The Yahoo group nosurgery4clubfoot has been a real comfort to me today.

Please God give my husband and I the strength to do this for our son. Help us to remain vigilante and compliant to the best care plan for him.

We won’t talk about the offhand comment about his brace making him look like Forrest Gump. It made my heart hurt for him, and it made me so, so glad that we will hopefully be through this before he has to be too much in the world without Mommy & Daddy.

 

Congenital Birth Defects

I’m still dealing with a lot of anger. It makes me feel weak. I feel weak as a mom and weak in my faith. I feel ashamed because I’ve started looking into this huge community of moms of premature infants who have had to endure so much more than my son and I have.

I take it out on my husband. I have flashbacks to the weekend my son was born and review what I did and how I felt to see if there is any point I could have made a different choice for a different outcome.

Rationally, I know there’s probably nothing I could have done to prevent my son’s prematurity. Just as there’s nothing I could do to prevent the shortened tendons in his left foot causing it to twist in. Of all the things that could be wrong, this is fixable and probably without surgery.

But I’m still angry, and I mourn. I hate that everyone who sees my “newborn sized” baby in a cast think he was injured in some way. I hate the pity when I explain to them why he’s actually wearing it. I worry about his future struggles with 23 hour bracing for the next several months and 12+ hours of bracing until he’s 4.

I know I should be thankful, but I’m still just too mad.

 

 

Aren’t All Kids Special?

We’re having trouble labelling our son “special needs.” Aren’t all children special, and don’t they all have needs? That’s why they have us. The parents.

I think Drake’s orthopedic care team has been surprised by both my mild reaction and his. Every cast he has had and even the tendon lengthening “surgery” haven’t phased him. I didn’t break down on them or have a cry.

See, he’s already a survivor. I’m expecting to feel a jolt of reaction to seeing him in the brace for the first time on Tuesday. Like the cast isn’t a permanent fixture in our household, but that brace or some version of it will be around until he’s 4 years old.

The thing that actually makes me sad is the fact that having a cast put on every week doesn’t phase my 14 week old son. He just sucks on his soothie paci a little harder, bearing it. Like he’s born with dignity everything else done to him in his short life.

Nope. I probably won’t cry either seeing that brace go on my baby boy. It represents hope. Hope that his future won’t include long lasting effects of his very low birthweight and prematurity. Hope that he’ll survive and endure.

Hope that I will never again see him limp and lifeless in my husband’s arms as we try to clear his nose and throat from the mucus of a reflux spell.

My son is special. His needs are special to us. But you can take your label of disability and shove it where the sun doesn’t shine.

Tomorrow we go for his hip ultrasound. I just hope it’s clear so he’s not faced with another fight.