Good morning friends. This edition of Miracle Baby Monday is brought to you by Mikaela. She is currently 32 weeks pregnant with twins and her story is truly a miracle.
Good Morning. I hope you are excited because Miracle Baby Monday is back for the week! Sarah comes to us today and I am honored for her to share her story. She is the friend of a real-life friend of mine, Alex, who also gave birth to two premature babies (still waiting on your story Alex…no pressure, though . After reading this story, Sarah and her family are a true inspiration to me and I think you will be inspired as well.
Miracle Baby Monday: A Tale of Four Preemies
It starts with Jaxson Gordon; born 12/11/07 at 34 wks and 2 days yet still only 4 lbs and 0.5 oz. at Madigan Army Medical Center. At 2 months I found out he had a single-umbilical artery which they knew would cause growth restriction, but then at 5 months I was diagnosed with an extreme case of pre-eclampsia. My blood pressure had been creeping up all along, (which was odd as I never had high BP before) but I went into pre-term labor this time and was hospitalized.
December 10th I started getting really sick, I had horrible headaches that wouldn’t go away, I was seeing spots, and was too dizzy to stand up alone. They decided to induce me and 17 hrs later I hadn’t really progressed at all and my blood pressure kept getting higher and higher. I felt like I was in a state of shock (later diagnosed as on-set pre-eclampsia) and suddenly Jaxson dropped his heart rate to 50! They flipped me over on all fours immediately and ran me to the O.R. for a c-section. They knocked me out and took Jaxson. When he came out he was blue and wasn’t breathing-I praise God I was out for that because even the thought of him like that makes me sick : (
He was doing fantastic! Such a little fighter! It was love at first sight! He only spent 2 weeks in the NICU but that was long enough for me! Now my little man is 3, and very advanced for his age! He is so impressively smart everyone who meets him is amazed!
Next comes Joaquin Richard born 6/8/10 at 30 wks and 4 days at 3 lbs 10 oz at Aurora Bay care Medical Center. (I LOVE Aurora!) With Joaquin I was 2 months along when I started seeing a specialist for early onset pre-e. I felt lousy, always with pounding headaches, seeing spots, and my vision started to go as well, I couldn’t see 10 feet in front of me without squinting really hard and even then it was tough. I was on a ton of BP meds and he just slowly increased them about every two weeks. They started weekly ultrasounds at 20 weeks as well as weekly HELLP labs and 24hr urines.
June 1st I went in for my checkup and my blood pressure was 182/116 and I was hospitalized immediately. My protein levels again were very high, and I just kept getting worse and worse. June 8th my brain started to swell and I was at stroke/seizure level, so again another emergency c-section. Joaquin made no noise upon arrival which terrified me, but I did hear him cry finally as they were about to take him to the NICU. I don’t think I have ever been so scared in my life than having my son at 30 wks!
And last but certainly not least are my twins, Cole Philip 3 lbs 3 oz and Wyatt Christopher 3 lbs 6 oz born 2/22/11 at 31 wks and 6 days also at Aurora. This pregnancy was NOT planned and NOT expected! So much for birth control! LOL! And then finding out it was twins was even a bigger shock! Where to even start with this story…
I went into a follow up appt with my specialist 12 weeks after Joaquin was born, knowing I was already pregnant. Before I told him, he told me not to have any more children and if I did to wait at least three years because my body “doesn’t like being pregnant” and I needed a great amount of healing time. Then I dropped the bomb! He put me on a baby aspirin a day (to prevent my blood from coagulating) and back on a higher dose of blood pressure pills as I hadn’t fully come off the one’s from Joaquin. I started 24 hr urines and HELLP labs every other Monday and got ultrasounds then too. Needless to say it was 2 weeks later I found out about the twins.
My protein levels kept going up though and on Valentine’s Day I was hospitalized again. This was a good thing though, because nobody thought I’d make it that far! Plus my body was slowly shutting down on me and I needed to be there. February 22nd rolled around and my brain had swollen again, I was in so much pain all over and I couldn’t see. So they rushed me back and my twins were born. They also didn’t cry and I was worried, I couldn’t think, see, and I was alone again. There was so much going on and so many people in there for one NICU baby let alone two! Geesh! In a state of utter confusion I just laid there with total loss of control.
Back in my room I struggled to do anything, I was totally out of it I couldn’t focus on what was going on around me and I couldn’t speak a full sentence. I ended up having a small seizure. So again I waited to hear how my babies are. When their doctor came to talk to me she had the hugest smile on her face. They were anticipating the boys to be very sick because I was so sick. But they only needed a tiny bit of oxygen then went on to c-pap and canula. They were doing so well! I was overjoyed! Cole had a very small brain bleed that cleared itself up and beyond that I can’t complain. So 30 days later my twins came home. Since then they have been doing fantastic and I pray they stay that way.”
Good Morning friends! I am blessed, yet again to be able to share the story of another miracle with you. This little girl’s mommy is a gifted writer and fellow blogging friend you can find at Mommetime or on facebook. I am honored to have her share her beautiful preemie miracle here today.
Finding Your Miracle
“I’m sure you know how babies are made… I know that I know in my mind how babies are made, yet six pregnancy test later and one Doctor’s confirmation; I thought, how did this happen? I was shocked… at 35 years old, a myriad of female problems and resolved to thinking that having a baby would not happen, but yet there I was… pregnant!
During my first trimester; I was nervous, excited, scared… all the normal emotions, I suppose!
I had experienced the heartbreak and ached over the loss of a baby and was focusing on the joys of being pregnant. Everything else with the pregnancy seemed normal. I felt morning sickness, and cravings. I even felt the fluttering feeling in my tummy, but then as time progressed and my body began to change, I felt something. I knew something was different… call it intuition or feeling; I just knew!
After many visits to the doctors, I began to think maybe it was in my head. I learned differently three days later… feeling an uncontrollable urge to urinate; I made my way to the bathroom, wiped, but it didn’t feel right, so I looked at the tissue, which was drenched in red. I slowly make my way up and look down, and all I see is red.
I cried out to the Sailor, at this point, totally doubting myself, needing him to tell me what to do, I did not trust what my eyes were telling me! He calmly says, “Let’s play it safe and go to the hospital.” His calm calmed the hysteria surging through my body; I felt numb!
I should have
Oh how emotionally detrimental: I wish. I should have. If, only. What if? Have you ever should all over yourself? I’ve had should thoughts so many times finding forgiveness has been quite a miraculous feat!
Two days after being admitted into the hospital, my daughter’s descent into this world began at 23 weeks plus 3 days gestation; when every hour is vital! The Neonatal Intensive Care Doctor was sent in to talk to us… to inform us that there was no hope for our daughter’s survival, so I told her, “If there is a God, it is not you, so please do the job you were trained to do!”
Our daughter arrived on a Sunday morning, her tiny little arms moving and whaling sounds coming up from her lungs; she came out of the womb showing everyone exactly how opinionated she can be! She fought many battles and experienced lots of ups and downs during her Nicu stay, but on this one particular day, which was one of the difficult days, so much so the Doctor had to put her on what is called an oscillator. I am not going to lie watching her little body shake and not being able to help her hurt to my core.
I continued standing there next to the life support machines, tubes and all the devices that served as a constant reminder of exactly where I was, and for a moment, I felt sorry for me… for me! She was the one fighting for her life, and now I felt sorry for myself!
It was at that moment, I knew I was utterly powerless… as if for the first time; I introduced myself to God and prayed for my little one. I knew God was present, and if she needed to leave this World the choice was for her to make; it had to be her choice. I believe she made the choice to stay! I do not believe, nor could anyone ever convince me that a God sits picking and choosing which babies live or die! That is simply too much for me to comprehend or live with. I’ve heard the cries of a Mama whose baby did not make it… the God of my understanding could never be so cruel!
After spending 4 months in the Nicu, not necessarily ready to leave, she needed to leave. The Doctors were becoming more and more concerned about infection and the importance of touch and parental bonding. So, a crash course in caring for a medically fragile child commenced! I still feel my stomach turn upside down when I recall the days before leaving the Nicu; I was so scared that I would do something wrong… like give too much medicine, not give enough, cough on her, insert the feeding tube incorrectly, not give her enough oxygen and that something I did or did not do would kill her.
We did our best with the tools we had, some days better than others… and some days I did not shower, cook, grocery shop or even acknowledge the Sailor or others existed. I gave what I had to being Mom… being Mom to a “medically fragile” baby!
I had to learn how to do all the therapies and the medically necessary stuff… it became a part of my daily responsibility. I’ve had to learn how to adjust and readjust to the daily stuff, she is doing so incredibly well now, she is not that same sick… medically fragile baby she once was, so when I look at her, sometimes I have to remind myself to trust that she deserves and needs to be treated like the age she is… not the baby she once was!
Holding her close to me and feeling the beating of her heart; I know I was meant to be her Mom, and all of the other stuff seems so inconsequential!
I no longer ask why me… why out of all the more qualified people to parent a medically fragile baby, was I picked… me of all people. Today, I know why and I am so very grateful!
…finding the miracle is merely acknowledging the improbable! ~mommetime”
If you are interested in sharing your family’s story of hope and inspiration on Miracle Baby Monday, please email me at firstname.lastname@example.org. Thank you.
Good afternoon friends! Miracle Baby Monday is here and this guest post is brought to you by my lovely mommy blogger friend and fellow mama of preemie twins, who you can find at The Nitty Gritty Mommy. She is a very gifted writer and I am very fortunate to have her here today sharing her story. Rather than give you the play by play of their NICU journey, she talks about the emotional aspect of being a mother of preemies. She echoes my sentiments exactly in this beautiful narrative.
why me? A journey
“From pretty early on, I had a terrible pregnancy with the twins. The situation was dire, and we were told we would definitely lose one, if not both twins. It was so surreal and awful that I could barely comprehend it. I kept waiting for the doctor to say, “but, we can do this to fix it”. He never said it. There was nothing anyone could do. And I thought over and over, “Why me? Why is this happening to me? What did I do to deserve this punishment?”Things went from bad to worse, and I found myself in the hospital for eight horrible weeks. I was depressed and sick and resentful. I laid in that hospital bed bitter and tragic and terrified. I know it’s terrible, but I begrudged all the happy people in the rooms around me with their easy pregnancies and healthy babies. I hated people who could come and go freely, while I was on strict bedrest, and even then no one could tell me that it would all be worth it in the end. One of my babies was still going to die, and the other had a 50/50 chance.I bonded with the nurses who checked my vitals and those of the babies every three hours, but it was a bond of desperation. Please, tell me why this is happening to me. Please validate these feelings of anger and sickness and even betrayal.
I prayed, a lot. But not for God’s will, as we are supposed to, but for a miracle. Or for it all to just be over. I simply could not take it anymore. I prayed out of desperation and tried to muster hope. But hope alluded me most of the time.Why me? Why do I have to lay in this bed all day with nothing to think about except my babies suffering, dying inside me.
I yelled and cried to my mom. I screamed, literally, about how much this sucked. I fell apart when my husband came to visit..sure that our lives would be ruined. We would never recover from this. I experienced my first true panic attacks.
See, most everything in life had come pretty easily to me. I never anticipated that the most important thing ever would be so marred by tragedy and fear.
When the twins were born, I looked at their tiny sick bodies, covered in monitors, overrun with tubes, ventilators hissing next to them. Oh God..why me, why them?? They were so tiny they couldn’t be held. We could cradle the top of their heads and the bottom of their feet with our hands, and that was all because their underdeveloped nervous systems couldn’t cope with more stimulation. We stood over their fragile doll like bodies and cupped our hands around them for hours. Helpless…
The first night the neonatologist visited us on my room to let me know there wasn’t much more that could be done..they were maxxed out on ventilator settings and blood pressure medications and antibiotics.
Baby A, who had been given a chance by the doctors while in utero, began to rally the next day. It would be a long journey, but there was hope for the first time in months.
But as I stood over B, I was still screaming inside. Why me? Why him. He is so innocent. I cried and cried while he silently cried. The ventilator separated his vocal cords, so even though he cried so hard he shook, no one could hear him.
They both pulled through..came off the ventilators and grew stronger. It was amazing to watch and miraculous to witness. It was still wrenching and awful at times, but my attitude was changing. I was still asking ” Why me?” all the time..but in a different way.
“Why me, why are my babies beating all the odds?”
While other mommys were holding their babies in the NICU for the last time, why did I get to feed mine, bath mine and cuddle for 45 minutes before returning them to their incubators. What did I do to deserve this?
While other mommys and daddys wondered if they would ever take their babies home, why did we get to anticipate bringing ours home after 7 weeks and 8 weeks in the NICU?
Why me? Why us? What did we do to deserve this?
I was not looking a gift horse in the mouth, I was simply in awe that I could go from despair and anger to gratitude and joy in a matter of days.
Why me, God? Why was I chosen to have a miracle play out in my life. Why am I worthy? And how do I live up to being a mommy to these awesome little guys?
So when terrible things happen, it is human nature to wonder “why me?” Is it capricious and random? Is it Karma? Does bad stuff just happen to good people?Why?
But look at the good, too, and wonder “why me?” Why is this joy, happiness, blessing, awesomeness happening to me? What did I do to deserve this? And if you can figure out what you did to deserve it, keep doing it. If you can’t, then just be grateful that you are asking the right question.”
This edition of Miracle Baby Monday is very special to me because unlike the previous two mamas, I have never met Isabella’s mommy. Rachel found her way to me through another blog and had the courage to email me, a complete stranger, her family’s beautiful miracle. She, like Branwyn and Erika, wanted her story of hope and inspiration to be shared with the world. Thank you, my dear Rachel, for your faith in me to deliver your message.
Isabella is the youngest preemie I’ve had to opportunity to encounter. Born at a mere 23 weeks 3 days, this little girl is remarkable. Rachel’s words are powerful and strong, her dedication to her daughter unquestionable. After her daughter was moved to a private room, Rachel made the decision to spend every night in her room, sleeping on an uncomfortable couch. I maybe spent 3 nights in the hospital while the boys were there so Rachel is definitely a hero in my book. I will leave you now with the story of Isabella.
“My daughter is a miracle. Her entrance into this world was the scariest day of my life. People kept telling me congratulations and I kept thinking what are we celebrating. Nothing was how I had imagined it would be. I didn’t experience my water breaking, or breathing through labor pains as I walked into the hospital with a giant belly. My pregnancy ended astonishingly early. But I am so blessed to have had the opportunity to walk this path of prematurity. It has changed everything about me, and has given me the gift of living in the present.
I found out I was pregnant in December of 2009. It was a complete shock for my husband and me. We were not trying to have a child, but we weren’t trying to prevent it either. We had been doing this for 16 years, and we just thought we had pretty good timing! I almost fell over when I saw those 2 pink lines. It took me a few days to adjust to the idea of being a mom, but I was almost instantly attached to this new life growing inside of me.
I was sick for the first few months, not the throw up kind of sick, just the nauseous, I feel like I’m going to throw up sick-and it lasted all day long. Other than that, my pregnancy was progressing normally. I was labeled “advanced maternal age” at 35, and also noted to have a few fibroids, but I was told neither of those things would interfere with my pregnancy.
Everything changed at my 20 week appointment. My husband and I were thrilled to find that our baby girl was looking perfect. However, we were confused and scared when our OB told us that my cervix was shortening. It was measuring 1.7cm, but she wasn’t too concerned as the cervix can be dynamic and can change. We made a plan to come back the following week for a re-check. Foolishly, I decided to attend that appointment alone, convinced that everything would be fine. Unfortunately, it was considerably worse and I was wheeled out of the office and told to go directly to the hospital. I was 20 weeks 5 days, 1-2cm dilated and 80% effaced.
Thus began 19 days of hospital bedrest. They weren’t quite sure if I had incompetent cervix or preterm labor so they treated me for both, positioning my bed with my head angled down and hooking me up to an iv of magnesium. It’s hard for me to remember those days. I wavered between extreme optimism and unbearable gloom and doom. I was sick from the magnesium, petrified that I was never going to see my baby alive. I was angry and scared and sad. After 11 days on prenatal I was moved to labor and delivery because I was now 3cm dilated and they weren’t sure how much longer I was going to last. I prayed and begged and pleaded to make it many more weeks. I would have given anything to stay pregnant…but I only made it 8 more days. On May 2, 2010 Isabella Maria was born via c-section. She weighed 1 pound 6 ounces and was 11 and ½ inches long. She let out 2 little squeaks…pretty good for a baby who only gestated for 23 weeks and 3 days.
Now began the NICU journey. The days after I gave birth are kind of foggy. I don’t really remember, but apparently they wheeled me in my bed into the NICU to see Isabella once she got stabilized. My husband said I just began sobbing uncontrollably and they had to wheel me out. I was so afraid of my daughter. I was afraid to love her even though I already did. I didn’t want to touch her. I could barely bring myself to go into her room. In fact, they put a chair in the hall just outside her room for me. When I went to visit I would sit in the chair and sob. The pain is really indescribable and I’m crying now just typing these words, feeling those feelings all over again. I quickly learned that each moment my daughter was here was a gift and that all I could do was show up for her. One step at a time I walked through the NICU and the days got easier. I re-opened my line of communication with God and came to trust that things were really out of my control…it was between God and Isabella.
When Isabella was ten days old she developed an infection. The first indication that something was brewing came from her increasing oxygen needs. She was on the oscillating ventilator and they had to keep turning up her oxygen until she was at 100%, but her saturations kept dropping. The doctor began discussing our options with my husband, as I was at home that night. He told my husband that the last option would be oral steroids, but that there were a lot of side effects from that treatment. Fortunately, she began to improve with antibiotics, and by the next day things were turning around.
On May 31st, 29 days after Isabella was born, I was able to hold her for the first time. The nurses had been trying to get me to hold her for a few days, but I was too afraid. I really believed that she would die if I disturbed her. The guilt of not wanting to hold her is still present for me today. Every time I look at her sweet face I wonder if she remembers a time when her mom was too scared to hold her.
It took Isabella over a month to reach the 2 pound mark, but from there she began gaining weight steadily. She graduated to c-pap on June 3rd and then to nasal cannula on June 10th. She moved to the continuing care nursery(CCN) on July 6th. Our hospital had private rooms, and the CCN had couches, perfect for me as I had decided to spend every night at the hospital until she was discharged. I wonder sometimes if the staff thought I was nuts! But I didn’t care…Isabella was stable…I was getting to know my baby and she was getting bigger and stronger. I started feeling like a mom. I could hold her whenever I wanted! And give her baths! I was never anxious to get home. I talked with her everyday and told her that whenever she was ready to go home was perfectly fine with me.
On August 17th, after 107 days, we left the hospital with a carseat filled with a healthy baby girl! Boy did we feel blessed…the luckiest parents on the planet! Because I had spent so much time with Isabella at the hospital, I felt really comfortable bringing her home. I knew the noises she made in her sleep and how her cry for food sounded. I only got to spend 2 weeks at home with her before going back to work, but I spent the majority of our time holding her. She loved being in the Ergo infant carrier…it mimicked kangaroo care and I think it was very comforting for her! And of course I loved it too!
We are coming up on Isabella’s second birthday. It’s a difficult time for me. A huge amount of varying emotions flood me during my quiet moments…driving in the car, late at night when trying to fall asleep, while rocking Isabella before bed. I cry more easily. I cry for the babies who didn’t get to go home, for the babies still fighting in the hospital, for the moms and dads who are so scared. I cry for Isabella and all the pain she endured. I cry because it’s unfair. I have survivor’s guilt. Why did I get so lucky.
The true miracle of Isabella is not just that she survived her early birth, but that she survived with seemingly no lasting effects to date. Her eyes never needed treatment. Her PDA closed with medication. She never had any brain bleeds. She was discharged without oxygen and sent home with no monitors or medications. She is growing nicely on her curve. She never developed oral aversions. She walked at 18 months actual age. She talks. She climbs. You would never guess by looking at her that she started out so sick and so small.”
Good morning to you friends! Thank you so much for stopping by! Today is the 2nd edition of Miracle Baby Monday and I am just pleased as punch to bring Conrad’s Story to you. Conrad, just like Claire, was in the NICU at Mercy Hospital, Des Moines at the same time my turkey’s were at Mercy Hospital in Des Moines. I met Conrad’s mommy, Branwyn, during a scrapbooking session the NICU offered to help mommies bond with one another.
Note: I was a scrapbooking machine during this time, but haven’t picked up a single piece of scrapbook paper since.
In summer of 2008, smartphones were just hitting the mainstream market. I mean, business professionals had them, and that was it. It was unheard of for normal people, like moms to be in possession of one of these bad boys. I don’t know how I survived, when now, I seriously sometimes think that someone needs to stage an intervention between me and my phone. Anyhow, I read a lot of books, you know paperback ones, because the Nook/Kindle hadn’t been invented yet and I scrapbooked. It was therapeutic. And I met Branwyn. I met her literally just a few days after Conrad had been born. She and I had suffered the same pregnancy related condition, HELLP syndrome, which caused our babies to be born prematurely. Her little one weighed just a smidge over a pound, unlike my turkeys who made 2 lbs look like giants next to those precious micropreemies.
Branwyn and her husband also had unique challenges that fortunately my family didn’t have to face. They lived almost 2 hours away from the hospital. So Branwyn was able to utilize the services of the Ronald McDonald House and stay close to her baby. Here is their story.
“My name is Branwyn and I had the wonderful opportunity to meet Andrea when our path’s collided in the NICU at Mercy Hospital. I am a special education teacher from Fort Dodge, Iowa and this is my story.
July 6, 2008 will always be the day that changed my life forever. I was 26 weeks pregnant and having an easy pregnancy. I had been having headaches for the past week but nothing came up abnormal when I went to the doctor. We thought I was just having migraine headaches, which I have had my whole life. Something changed during the day and I started having pains in my left side. My husband, Joel said we have to go to the hospital. I really didn’t think it was necessary but I figured we would go and they would give me something for the headache and we would be home. Boy, was I wrong.
When we got to the hospital my blood pressure was 220 over 190. Well over stroke level. Tests followed, I was put on oxygen and then my doctor appeared in my room. I could tell by her expression that it was not good news. She sat on the edge of my bed and gave us the news we were not prepared for. I had developed pre-eclamsia which had turned into HELLP syndrome (Hemolysis Elevated Liver enzymes Low Platelet count). Our baby would be delivered today and might weigh a pound if we were lucky.
Had I just heard her correctly? It is July and he isn’t due until October. It is too early. She continued to say that babies are viable at 22 weeks but we needed to understand the seriousness of the situation. She said you both could die if we don’t do this soon and I would really prefer to take you by life flight to Des Moines because Fort Dodge is not prepared to deal with a baby with needs like he will have. We might have to deliver him here and send him by life flight to Des Moines and keep you here until you are able to travel.
I looked at her and said, “That is not going to happen! What can you do to get us both there? I trust you and I know you will do what we need but we need to go to Des Moines together.” She said she would do everything she could to get us both there.
With this being a holiday weekend and with a lightning storm in progress, life flight was not an option. They were on their fourth group of ambulance crews and finally got two ladies to come in. We were finally off to Des Moines. That was the longest, scariest and life altering ride of my life. We got to Des Moines at 7:20 in the morning. The doctor was barking orders to a team of about 10 and Joel was standing in the corner trying to get to me. The doctor said we are delivering this baby right now. I said I thought we wanted to get one more shot into me to give the baby’s lungs time to mature.
The doctor got up very close to my face and said, “Honey if we wait one minute, you are both going to die. I need your signature right here.” I got the B of my name and he grabbed the paper and we were moving. I looked back only to see Joel slide down the wall.
It was on July 9th that I was finally able to get into a wheel chair and go to the NICU to see my baby. They had tried to prep for me what I would see when I entered the NICU. But there are no words to explain my initial shock when I reached his room. On the video monitor that had been placed in my room, made him appear very large and looked fine. I remember standing in his room looking at the isolate and crying. He was so little, there were wires and tubes and monitors going off and on and beeping. The nurse was trying to explain what things were to me and all I could see was this helpless little person with his eyes covered up, tubes down his throat, needles/IV’s sticking out of his head, oxygen tubes attached to his nose, a blue light with wrapping around his foot and a diaper that was up to his arm pit.
After the initial shock of what I was seeing, I began listening to the nurse who was being brutally honest with us. She was explaining that the next few weeks were very critical for Conrad and we needed to understand all the things that they were looking for. He would be undergoing a series of tests to look for a heart condition, a brain bleed and tests to ensure all of his internal organs were working correctly. My head was still trying to wrap itself around all this NICU medical jargon when an alarm starting going off.
What now?? His breathing had slowed too much and they were stimulating him into breathing again. At that moment I knew I needed to pray and take everything in because I had no idea what was in store for us. I realized that I should not take any moment for granted and this little man was our miracle no matter how long he was in our lives. I can honestly say now that I don’t think I let myself believe he would be okay until weeks later. I was really afraid to love him for fear that I would loose him. I couldn’t say it out loud to anyone at that time because they were trying to make me be at ease with it all. I also knew that I needed to put a brave face on because Joel was looking to me for guidance. I could tell he was struggling so I knew he needed me to be strong. I waited and until things seemed a little calmer and found a bathroom a floor down and locked myself in and cried. I cried for that little man, I cried for my husband, I cried for the whole situation and I cried for myself. Our once perfect life had taken a drastic turn. I realized that I could have continued for feel sorry for myself or I could pick myself up and face this journey head on. I headed back into the NICU and faced my fears.
We were an hour and a half away from home and so the Ronald McDonald House became our home away from home. It is a truly amazing place that has thought of everything to make you feel at home. It was a great place to meet other families going through similar things and help you process what was going on. We would go the hospital at 7:30 am every morning and leave around 6 every night and then our amazing family would go and sit with Conrad until 11 at night.
One week after Conrad was born, we walked into his room and the nurse said okay today it is time to hold this little guy. Had I just heard her correctly? FINALLY I would get to hold my baby. She said I had to hold him first because it is always the mother first. I was so excited and scared to death at the same time. What if he couldn’t breathe or stop breathing while I was holding him, what if I hurt him, what if…. The nurse came in and told me to put on hospital scrubs because I would be kangarooing with Conrad. What? Skin to skin contact while holding him. So I sat in the chair, she picked him up and placed him on my chest, put a heated blanket over him and adjusted some wires. She sat with us and made me feel so at ease. She showed us how on the monitor when I held him, his stats were the best they had been. It was truly an amazing moment and one that I will never forget. Joel held him after I did and later after we processed the day; we had been feeling the same things. This started the many kangarooing sessions with Conrad.
Early on one of the nurses told us to expect the unexpected and understand that you will take one step forward and then two steps back then three steps forward to five steps back and that the NICU journey is like a roller coaster. Best advice we were given! Conrad started gaining weight but struggled with eating. He had to have feeding tubes for many weeks. He was not able to breathe on his own, which meant oxygen and tubes were normal everyday discussion. Was he getting too much oxygen, not enough? He would have what they called spells which were when he forgot to breathe on his own and then the beeps would go off and they would come in and stimulate him to take a breath.
After we got comfortable with him, the nurses turned his cares over to us and they were done every three hours. We had to change his diaper, check his tempeture, change the pulse ox machine and feed him. This became a way of life and we scheduled our days around his cares…this was our normal. Each day we went in and heard how his night went and what there next plan was. Conrad had many scares in the NICU. He had numerous infections which caused him to be placed back on the vent twice, reverse isolation where we had to wear hospital gowns, gloves and masks and a grade two brain bleed. The brain bleed eventually corrected itself!
Another big obstacle was that due to the levels of oxygen he was given, he developed Retinopathy of Prematurity (ROP) of the eyes. The blood vessels in his eyes were going the wrong way because of the levels of oxygen. He had to have lots of different tests and exams and many follow up appointments. When he started eating on his own, it became a huge challenge for all of us. We had to learn to feed him which doesn’t sound difficult, but he had to learn how to suck, swallow and breathe on his own. The first time I was feeding him, he stopped breathing and the nurse just looked at me and said what do you do? I said a few not nice words and had to get him to breath. I rubbed his back and patted him hardly on the back. Finally he took a breath. I am sure I didn’t breathe at all either!
We ended up meeting with Occupational Therapy to give us suggestions to get him to eat on his own. So we were given lessons from the OT. She showed me how to hold him on his side with my left hand holding his neck and the palm of my hand on his back to feel his breathing. Then to feed him with my right hand counting 1-2-3 and then tipping the bottle the other direction so he wasn’t getting any milk and watching his breathing from the front. Something that should be automatic for him was not and was not automatic for us either. We had to train ourselves and it was not easy. It got very frustrating at times and many times we wanted to quite. It should be easy to feed your baby but it was so scary and frustrating at the same time.
When they tell you that the NICU is a journey that will change you, they are not kidding. Finally after 79 days, Conrad was discharged from the hospital. He came home on oxygen and faced many follow up appointments in Des Moines. He is now 3 years old and still tiny for his age. However after his rocky start, there is nothing wrong with him. He is happy, healthy and doing great. He is learning just as he should and has meet most milestones on time or early in some cases. We have our miracle and we know that we are blessed! Our journey has changed us in so many positive ways including realizing what you are given, never take anything for granted and that even when faced with things that seem to impossible to handle, you can do it and you can do it together!”
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Today is a very special day for me. It is the day that was the entire inspiration behind this newfangled blog design. Click here and here for a little background on how this idea. Miracle Baby Monday begins today with Erika, Mike and Claire. Claire and my boys were born mere weeks apart and spent roughly the same amount of time in the NICU at Mercy Hospital in Des Moines. The difference: Claire was born weighing less than a pound and a half. One of the most amazing aspects of her NICU stay is despite being so very tiny, she was only on a ventilator for a few short hours after her birth and she went home weighing less than 4 pounds. What a strong little girl!
The rather ironic part of this story is how Erika and I met. We did not meet in the NICU, nor anywhere near the hospital. We actually met online, in a parents of preemies chatroom. Some of you preemie parents might find this odd, but the NICU at our hospital was brand spanking new and had only private rooms. So there really was little opportunity to interact with other parents and really have someone to share in the journey with. Erika is a teacher in Des Moines, IA and has graciously agreed to share her story of hope, inspiration and courage.
“I had no idea anything was wrong with my pregnancy for the first few months. I went to my 20 week ultrasound in June and found out I was pregnant with a healthy baby girl. I was soooooo excited! I have always wanted to have a daughter. During week 23, I suddenly became VERY swollen, especially in my legs and feet. In fact, none of my shoes would fit anymore and I had to go out and get some new sandals! I called my doctor, and they assured me that swelling was normal, especially since it was the summer. I felt perfectly healthy otherwise, so the doctors weren’t concerned.
On Monday of week 24, I went to my regular doctor for an unrelated issue, and found out my blood pressure had sky-rocketed. This was at 5pm, when my OB office was already closed, so they strongly suggested that I call my OB in the morning to go get checked out there. I went to see my OB about 11 am the next day and my blood pressure was still high. He told me to go to the hospital to get checked out further, and informed me that they may want to keep me overnight for observation
I wasn’t worried at all when I was initially checked into the hospital, until they told me that they were worried I might have pre-eclampsia. I was admitted overnight, and by that evening a doctor came in to tell me that they were keeping me at the hospital on bed-rest until the baby came. I was just shocked! They told me that with pre-eclampsia they wouldn’t let me go beyond 36 weeks, but that was still 12 weeks away. I realized that even though it was the middle of summer, I might not be leaving the hospital until Fall.
Bed-rest was very hard. The bright spot in each day, though, was that I got to see my little girl on ultrasound. In addition to pre-eclampsia, the doctors also found out that Claire (the name we had decided on for our little girl) was dealing with low amniotic fluid and intrauterine growth restriction (IUGR). She was measuring at only about 1 lb when I was first checked at 24 weeks, which was smaller than she should have been at that time. They also discovered that the blood flow in her cord was restricted – absent end diastolic flow.
During the weeks I was on bed-rest, they monitored Claire’s heart rate multiple times per day. She would often have spells where her heart beat dropped drastically, and would take awhile to come back to a normal beat.
On the morning that she was going to be born (unbeknownst to me) I had an ultrasound that started out fine until they found reverse end diastolic flow. So instead of her blood flow just being restricted, it was now flowing from her to the placenta and then bouncing back. So I was put on the heart-rate monitor immediately back in bed, and her heart rate kept dropping over and over again. A couple hours later they came back and told me that I shouldn’t eat anything, as I may have to have a c-section later that night. I was scared, to say the least. At that point I was only at 27 weeks and 3 days. My goal was to get past 28 weeks, as that is when the expected outcomes for babies born at that gestation get a lot more hopeful. I knew she was only a little over a pound, and I had seen babies up in the NICU at that weight, hooked up to many machines and looking extremely fragile.
The news came about 6pm that evening – they were taking me to the c-section wing to deliver. I cried a lot because I was extremely scared. Being born at 27 weeks, there was a good chance that many things could be wrong with Claire. At 9:13 that evening, Claire was born. I didn’t even get to see her immediately, as they whisked her off to check how she was doing and get her hooked up to things. My husband, Mike told me that he heard her give a little cry right after she was born, but I hadn’t heard it. Later I would find out that she scored a 5 and then an 8 on the Apgar test. She was born at 560 grams (a little less than 1 lb 4 oz) and measured 11 ¾ in. long.
She was taken up to the NICU pretty quickly, and Mike went with her. I was taken to recovery for a couple hours. Mike came back to see me after awhile and we started calling our family members and close friends to let them know about our new daughter. When the nurses finally wheeled me up to see Claire in the NICU, I was laying flat on my back and could hardly see Claire at all. The nurses tried to help me reach over to touch her, but I couldn’t reach, and I was so frustrated.
The next day when I had recovered enough from the surgery to go see Claire, I couldn’t believe the tiny, fragile little girl laying in the isolette was really mine! I loved her immediately, and surprisingly, most of my fears went away. I don’t know what it was, but looking at her, I was absolutely sure she was going to make it. Amazingly, when I first saw her that day, she was breathing unassisted! She had been hooked up to a ventilator for about 10 hours during the night, but she was doing so well that for 2 days she wasn’t hooked up to any kind of oxygen. When Claire was 3 days old, she was hooked up to Vapotherm to help deliver oxygen, since she had been having many “spells” (episodes of apnea and bradycardia). These spells are common in preemies, as their lungs and brain just aren’t developed enough, and the little babies will sometimes just forget to breathe, which drops their heart rate.
Claire also had a feeding tube down her nose (after 2 days) , and a PICC line in her leg for a little while. She also had to be under the billirubin lights for five days to help bring down her jaundice. She was so cute during this time, as she wore a little mask over her eyes, and with the lights it looked like she was sunbathing.
Oh, it just so happened that for a couple days after she was born, the NICU was out of the smallest size diapers (meant for micro-preemies like Claire), so they had to use the regular size preemie diapers which were HUGE on Claire! Right away Mike and I got to help take care of Claire every 4 hours. We learned how to take her temperature, change her pulse-ox, change her diaper, and swab her mouth. I finally felt like I was doing something to help take care of her. Most of the time at first I felt pretty helpless, otherwise. I just sat in her room most of the day watching her, napping, pumping, and just waiting until the next 4 hour mark so that I could do something with her.
When Claire was 3 days old, I was finally discharged from the hospital and got to go home. It was such an empty feeling, leaving my new daughter behind at the hospital. Even though I couldn’t do much to take care of her, just being there in her room with her made me feel more connected. Mike would drop me off at the hospital in the morning, and come back to see Claire after work for awhile. Then we’d go home, but often I would drive back in the late evening to see her because I missed her so much already.
Mike and I didn’t get to hold Claire until she was 4 days old. Starting that day, she was allowed to be held for 1 hour/day doing kangaroo care. It was wonderful. I couldn’t believe how tiny she seemed the first time they laid her down on my chest – she weighed hardly anything! Mostly she just slept while laying on me, but sometimes she was wide awake and alert, and then I would sing to her or just talk to her.
Pumping: that was another thing that made me feel like I was needed. It was hard, and for awhile I was pumping every two hours during the day to try and get my supply up. Even though I really hated doing it, I knew that that was the most important thing I could do for Claire at that time. That’s what would keep me going when it got really tough, and sometimes very painful.
Five weeks old was also a milestone for Claire: she finally was starting to fit in some preemie clothes! They were giant on her, but so cute
Probably the biggest worry we had with Claire was how slowly she gained weight! It took her 5 weeks to reach 2 lbs, and almost another month to reach 3 lbs. We actually took her home at 3 lbs 15 oz! Luckily the NICU gave us a special car seat to take Claire home in, as she was too small to fit in the regular car seat we had!
Claire spent 75 days in the NICU before she was allowed to come home. During this time, she had to endure a blood transfusion, 5 eye exams (terrifying for me to watch!), and 2 head ultrasounds to check for brain bleeds. They never found ROP (retinopathy of prematurity) in her eyes, just pre-maturity, and she never had any brain bleeds. She didn’t have a PDA in her heart, so luckily she never had to have any surgery. Basically, we were extremely lucky with Claire. Despite being born so early (and much smaller than she should have been), the scariest thing we went through with Claire were her spells. She spent 25 days on vapotherm, and then another 7 days on a nasal cannula, but starting on Sept. 9 (when she was barely over a month old, and still less than two pounds) she was off oxygen completely!
On October 20, we were finally able to take Claire home. As excited as we were, it was also a little terrifying. At the hospital, she had been very closely monitored 24/7. We took Claire home without the aid of any monitors, and I was so scared something would happen to her while I was sleeping and I wouldn’t notice. For a long time, I put her bassinet right next to my side of the bed, and often would fall asleep with my hand resting on her.
As about 4 months passed after she came home, we started noticing that the back of her head was pretty flat. We discovered that this happens to many preemies after they come home from the hospital, since their neck and head muscles aren’t strong enough to turn their heads often enough while sleeping. Claire ended up needing to get a helmet. She got a cute purple one with butterflies that she had to wear for 23 hours each day. It fit close to her head in some spots, and looser in other spots so that as her head grew, it would grow in the right directions. This was very hard…for me! Claire got used to it right away, but I just felt horrible that she had to wear it. Luckily she was young enough that she never noticed any stares she got from other people in public. She wore the helmet for 5 months, and it worked wonderfully. Her head is still slightly flat in the back, but you can’t tell with all her beautiful, curly blond hair!
Claire excelled at many things (breathing and staying healthy, for instance), but we had such a tough time getting her to gain weight! Many of the doctors and nurses reassured us that most preemies start putting on a lot of weight once they finally get home from the hospital. Not Claire! We fed her a high calorie mix of formula up until she was a year old. She gained about a pound a month, and was 13 lbs 3 oz at 1 year old (and had grown up to 26 ¼ in. tall). By age 2 she weighed 19 lbs 8 oz and was 32 ¼ in tall, and now at age 3 ½ Claire weighs about 26 lbs and is 37 inches tall.
Even though Claire was a “super-star” (as some of the nurses called her in the NICU), there were still things that lingered on with me long after she left the hospital. She started sleeping in her own room when she was about 5 months old, but every single night after that I would go in to check on her before I went to sleep, just to check that she was breathing and that her heart was beating. It’s only been probably the past 6 months that I’ve started doing this less and less. Now usually, I just peek in on her, and close the door. Besides the fact that she is a little small for her age, most people would never guess that Claire was a preemie. She is a perfectly normal, healthy girl. She is very smart, and loves to learn new things. She has been in gymnastics for over a year now and loves it. She loves to draw, sing songs, listen to books being read to her, play outside, and she is the most loving daughter – always wanting to give Mommy and Daddy hugs and kisses.
I am thankful every day when I look at her, that nothing is wrong with her. I am thankful that she is alive, and healthy, and developing normally. Claire is our miracle.”
My dear friends, thank you so much for taking the time to read about Claire, the epitome of the word miracle. She is just one of many examples of children who defy all expectations set forth by medical science and thrive despite the many obstacles thrown into their paths.
Next Monday, you all will get to meet Conrad, another one of the turkeys’ NICU buddies. If you or anyone you know would like to share your story here on “Miracle Baby Monday” please email me at email@example.com. God Bless!
When I started this blog, I was amazed at how easily the words flowed through my fingers. I had a lot to write about apparently. I wrote this post just the other day while doing some serious soul searching. And just yesterday I had an epiphany of sorts.
I love sharing stories about my turkeys and our life. But there is so much more in this world I want to share with you. I want to use this blog for good. That’s a pretty vague statement, I realize. But when the words “Miracle Monday” popped into my head yesterday, I started thinking.
Whenever, I hear the word miracle, an image of my boys when they were first born immediately materializes in my toddler hazed brain. I started thinking about all of the women I have known who have given birth prematurely and the stories behind those births. I also started thinking about all the families I have known who have children that have overcome medical conditions. I want to give those children and their families a voice.
Their stories are of hope. Their stories are of perserverance. Their stories are of faith. Their stories are of triumph over tragedy.
I want other parents in similar situations to find my blog and read these stories of real people and real children overcoming the most extreme obstacles. Real stories of real people and how their faith, hope and love helped them to overcome the most daunting of times.
I am so happy to announce that “Miracle Baby Monday” is coming to my blog. Every Monday, beginning April 9, I will feature one family and their story. I will provide a forum for their voice to be heard.
There are three lovely ladies who have volunteered to share their stories. Two of these ladies gave birth to micropreemies, their babies were born weighing right around a pound. The other beautiful woman delivered two preemies less than 15 months apart. I am so grateful that these women have decided to help me get my idea off the ground.
While these are stories regarding premature babies, I want to stress that I would like to share stories of other miracle children as well. If you would like to share your story or know someone who would be interested, please email me at firstname.lastname@example.org.
In the next several weeks, I will be switching my blog over to wordpress and will have my own domain. This is a little frightening for me, but after doing some research and speaking with a wonderful technologically savvy friend who has offered her assistance, I’ve decided the move is necessary.
I will continue posting until my launch date and I have plenty of new stories to amuse you with, including one about the turkeys and golf. That’s a fun one.