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I thought that when I wrote my birth story out, I was done. I would go home with a baby on my chest, in my recliner and I would become familiar with late night tv as I had with my daughters when they were newborns. Looking back now, I can see where I went wrong, where the nurses went wrong, and when my inner voice was telling me that something was wrong, but I ignored it.
When Oliver was born on Saturday, I attempted to breastfeed him. He fussed, sucked on his fists, turned his head side to side and sucked on his bottom lip. With those hunger signs, I did what I had done before with my daughters, and brought him to my breast for the first time. He shook his head vigorously back and forth at my breast, and did this for about 10 minutes. He never latched on properly, and when he did put my nipple in his mouth, he didn’t suck. He just stared like “What now, mom?”. This continued with every feeding, though some he did suck a little, but never swallowed, and instead had a mouth full of colostrum/milk that was spit out as soon as he unlatched. I attempted to feed him constantly, he always seemed so hungry, but never seemed to eat well. Sometimes at the end of nursing, he would go to sleep which is typical for a satisfied baby. I later realized he was passing out from exhaustion.
After two days, I found that he still wasn’t eating right. I expressed my concern to every nurse when they asked how he was doing. I was told “Oh, he’s a boy, it takes a while for them.” and “Don’t worry, he’ll get the hang of it.” A “lactation consultant” came in, but she sat on the couch in my room and told me how to angle his mouth to ensure a good latch. I was already doing that. She also told me that sometimes it takes a while, and to not give up. On Monday we were supposed to go home, but the on call pediatrician recommended that we stay another night to establish nursing. Tuesday morning he ate well, so we went home that afternoon. That evening however, he did not eat well, and by 2 am, my boyfriend and I were almost hysterical with frustration and worry. With my daughters in our care again, things became hectic and we missed a few signs that something was wrong. He had not had any poop diapers since the
meconium passed, and his pee diapers were almost non-existent. His only pee diapers were dime sized splotches that were at first dark yellow, but became orange and eventually it looked like he was bleeding in his diaper. (The red diaper is what alarmed us to call the nurse hotline later.)
Wednesday, the focus turned to me as I started to feel very sick. My legs swelled so much that I could barely move and we rushed to the doctor that afternoon. I had ultrasounds done and blood tests done as I was showing signs of post-pregnancy toxemia. Wednesday afternoon, my parents took the girls so I could abide by my doctor’s orders of 3 days bed rest. Wednesday evening, I was fed up with his lack of pee diapers and his still difficulty eating. I gave him until 9 pm to have an explosive pee diaper, or we were heading to the hospital.
Before we went, I called the nurses hot line and explained the symptoms. The nurse said we needed to go.. NOW. I didn’t realize how serious it was until then. I started to pack our diaper bag and the nurse called back. She recommended we call an ambulance, but we lived down the street so it would be faster for us to drive than wait the 10 minutes for the ambulance to arrive.
Once at the ER, we checked in and I was bawling at this point. He was rushed into triage where his blood pressure was checked and his temperature was taken. We were told to wait.
THREE HOURS LATER.. Nothing. We had waited and waited in a waiting room full of people, standing room only. My mom and boyfriend went to the counter six times to get help, but each time they were told we had to wait just like everyone else. At this point, Oliver’s skin tone was pale with red splotches, his arms and legs had grown limp and his breathing was shallow. My legs were so swollen that I couldn’t stand or walk. We decided to leave and drive one hour to the nearest children’s hospital. In order to leave the ER, my boyfriend had to get a wheelchair for me and my mom and him had to lift me into the wheel chair as I couldn’t put any weight on my feet as they were so swollen that my feet were pointed down, away from my calves.
My dad drove, and in the back seat my mom and boyfriend continuously checked Oliver to make sure he was still breathing.
Once at the Children’s hospital, a wheel chair was brought out for me, and Oliver and I were wheeled into the ER. Within 10 minutes, he was hooked up to IV fluids (after 5 attempts of getting an IV in him and three blown veins). He instantly started to move again, and opened his eyes. It was now 3 am. By 5 am, he was admitted and we were wheeled to the rehab floor.
We spent from Thursday at 5 am until Saturday at noon at the children’s hospital. His blood sugar was low, as was his heart rate, so blood was drawn several times, he was hooked up to IV’s and heart monitors and several tests were done.
In the end, the glorious amazing wonderful team at the children’s hospital discovered that a) he was not sucking or swallowing properly as he put his tongue on the roof of his mouth when drinking and b) he had neo-natal hypoglycemia. Both of these issues are thought to be caused by him being “premature”, even though he was born at term (38 weeks). His doctor explained that some babies are premies, even though they are born at term (and some babies are developed maturely even though they are born early). Every baby is different.
There were a few warning signs that the nurses/doctors in the maternity ward didn’t catch. The first thing was that his arms fluttered as soon as he was born, and the days following (he actually did this in utero as I felt little rapid flutters from his hands). The second was his low temperature and his constant need to be wrapped in blankets to keep his temperature up. My concerns of his not eating right were brushed off several times, and I stupidly believed their reassurances that nothing was wrong. Also, his lack of wet diapers should have been noted by the nurses, but also by me.
We are home now, and he has a blood glucose monitor. We have to check his blood sugar every other feed, and I am now exclusively pumping in order to monitor his intake. We stick his heel about 6 times a day, and so far today we have had two low readings but they were brought up to healthy levels as soon as he ate next. He has to eat every 3 hours… no sleeping through the night! We also have to feed him from special bottles at a 45 degree angle, and we have to rub his lips, open his mouth, insert the nipple once his tongue relaxes downwards, and burp him by laying him across our arms and rubbing his back.
The doctors are hoping that these two issues (blood sugar and suck/swallow) will be resolved once he is older, but there is a chance that he will always have hypoglycemia and will have to live with it his whole life.
My boyfriend is completely amazing. He stayed by his hospital bed for hours until his legs almost gave out from being up for so long and I forced him to sleep on the couch where I had been. My bed rest went out the window and my legs are still balloons, but I’ve been keeping them up as much as possible so I can now walk, but I can’t wiggle my feet or feel my toes. This last week has been so emotional. My boyfriend and I bawled every time they drew blood, inserted a catheter into his urethra, and his heels are now scabbed and bruised from being blood tested over 30 times in the last four days. I cried until there were no tears left and I gained so much admiration and respect for my boyfriend. It wasn’t until now that I’ve realized just how phenomenal he is and what a great father he is. He held our baby’s hand every step of the way, and still tried to care for me as I couldn’t walk for two days.
You should always listen to your instinct, and never doubt yourself. The medical staff does not know everything, as you are the mother and you have an instinct.. Listen to it!!!
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Mommy to Charly (4), Peyton (2) and Oliver 8/25/12.
Oh my goodness. What an ordeal! I am so glad you were able to get help for him. Please keep up posted and please take care of yourself as well. I was holding my breath the entire time I was reading your story!
I am so, so sorry that you have been going through that. We really DO have the best ability to judge if something is wrong with our own bodies, and I'm sure the same goes for our babies. I hope that you and your little guy continue to recover from here and I'm so glad you got help before it was too late! Keep us updated on both of you!
Oh my goodness!! I am so glad he is okay! You were so smart to go to the children's hospital. They really understand newborn needs and have the right sizes f tubing and everything else. How incredibly scary! And you poor thing with balloons for legs and not even being able to wiggle your toes. way to go boyfriend!!! What an awesome guy!!! You deserve it and I'm so glad you are being taken care of. Big hugs!!!
One of my boys had to have a spinal tap and catheder put in at 21days and it is horrid to watch them go through. I hope he just thrives now!
OMG what an ordeal!!! I am praying for you and your little man!!! I am sooo glad you trusted you instincts please keep us posted on you and your little man as you both recover!!
Oh no! Poor baby boy! I'm so sorry you and your baby had to go through all of that. It's a good thing you left that other ER and went to the children's hospital. ER's at regular hospitals have such a poor bedside manner and from my experience generally don't seem to care if you walk in with your leg cut off, they still make you wait like everyone else. I'm so glad you and your son are doing so much better and you were able to control the problem. Your boyfriend sounds amazing and I'm glad he was there for you guys when you needed him. Thoughts and prayers that everything continues to get better!
Oh my gosh; I thought for sure I was going to be in tears before the end of your story. I am so happy to hear that you were able to find help for your precious baby boy and yourself. I will definitely keep you and your baby in my thoughts and prayers. I hope you are both able to make a quick recovery. Please take care of yourself as well.
Yikes! I'm glad to hear he's doing better now. I can't believe the nurses and lactation consultant just blew off your concerns like that. My oldest had a lot of latch problems in the hospital and they were checking his blood sugar levels within 12 hours of birth to make sure he was still ok since he hadn't been able to get a good latch to feed yet.
Glad you were able to get him the help he needed. I hope life is able to settle down a little for you now.
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Ruth - Wife to Scott, Mommy to Will (12/2007), James (3/2009), Ellie (11/2010), & Faith (9/2012)
I'm sorry you had to got through all of this. Really glad he's doing better and hope you feel better ASAP too.
Were you induced?
No, I had a c-section scheduled at 39w2days, but went into labor on my own at 38w4days. This whole situation would make sense if he was forced out of me too early, but he was ready earlier than anyone intended. But not even that "early", as he was technically term.
An update though:
He is doing better, gaining weight and fat rolls. I'm able to pump 90% of what he needs, but he still can't latch on to my breast so I have a feeling we'll be exclusively pumping long term. His blood sugar is staying pretty stable but he has had a few low readings which were immediately resolved once he ate. We're going to have a follow up appointment at Children's in two weeks and hopefully they'll tell us we can hold off on some of the blood sugar tests.. I hate it. He cries every time.
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Mommy to Charly (4), Peyton (2) and Oliver 8/25/12.
