[Duckie.]

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!!!

[youngwoman]

Wow. What an ordeal you've all been through. Thank goodness for the staff at the children's hospital. I think you're right - there is nothing that can compete with a woman's intuition. Go with your gut. I hope you and Oliver are both on the road to recovery. BIG HUGS to you all!!!

[Julka]

I got the impression from your post that you're partially blaming yourself for what happened, and I honestly think the fault isn't yours. At all. In my opinion, they shouldn't have even released you from the hospital until he was a) eating without problems and b) making regular wet & dirty diapers. I just don't think that a mother, whether a FTM or BDTD, should be struggling like this at home with a newborn baby. Those first few days, after they are born, are really really stressful. Yes, a mother's instincts are usually right, but we're talking about serious medical issues here that involve both the newborn AND yourself. Instincts or not, it shouldn't matter. They should have FIGURED IT OUT because THEY ARE DOCTORS, you're not. It just sounds like everything could have ended badly and that scares me. I am glad you got help in time, though. I can't imagine what you have gone through & I am sorry you had to deal with so much.

[Admin-Twinkle]

I whole-heartedly agree with Julia. You are not to blame at all! I'm so glad he got the care he needed. Lots of hugs to you!!! I hope you both are able to recover quickly and smoothly from here on out?

[happyhme44]

Heck how would anyone who isn't a medical professional know anything about hypoglycemia? Also I agree they shouldn't have let him out of the hospital unless everything was perfectly normal. How did they not know about this? You did nothing wrong and they are ******** for being complacent at work. I am sorry that the hospital you had the baby in and that one terrible ER were so terrible. Doctors and nurses like that are worthless. Have you considered eventually writing a complaint letter once thing settle down? I was so worried that whole time reading your updates.

[Bermuda Girl]

Oh hun, I am so sorry that you have had to go through all of this, hugs and more hugs.

[claire1979]

Wow you really have been throu the wars. Im glad you followed your instincts and got him to the childrens hospital, i dread to think. Hope he and you are on the mend. Can't wait to see your little man (pics...lol)

[blessdmommy]

Wow! I am so glad that you went with your gut! You're such a great mama! Oliver is luck to have you!

This brought tears to my eyes, because I can't imagine the fear you must have felt for Oliver and yourself. I'm glad Children's was able to get things figured out. Rest easy, mama, and enjoy your little boy!

[Duckie.]

Thanks everyone! I do blame myself a bit. I should have known that something was wrong, but I feel like I couldn't have. I've always exclusively breastfed on demand for at least two months.. so I have essentially NO idea how much a newborn eats in ounces. I've never had issues before so counting diapers was never really a concern. I guess what made it difficult to tell was that I am an experienced mom and I generally know what I'm doing, so I didn't think anything would be different with this baby. If this was my first baby, I would have had google and baby books out before his first meconium diaper appeared and I think I would have been alerted sooner.

He's doing well, gaining fat rolls and having a few alert periods during the day. His blood sugar is pretty stable if we stick to him eating every 2 hours, but if we let him go over that, it drops from the 80's, to the 60's almost instantly. His suck/swallow issues is a huge battle that we have to work with at every feeding and is preventing him from breastfeeding. I'm exclusively pumping every 2 hours, 30 minutes before he eats. The pumping, testing, bottle feeding is eating away at our sleep hours and Mike and I get about 20-45 minutes of sleep before we have to wake up and start the whole hour and a half process over again. It's exhausting..

But I refuse to do formula. Breastfeeding is SO important to me, and I figure with his medical issues already, he'll need all the help he can get in the growth/nutrition area. I wish I was rich so I could hire a maid to pump my breasts for me.. hahahah

A few pictures:





Children's Hospital

[HS&Fsmom]

Congrats on Oliver! The family pics are beautiful too!

I am so sorry he had such a rough start! The first part of your story sounded familiar as Hugo had a similar tongue problem. He never could latch and I had to pump until I had too many breast infections to continue and we had to give him formula pretty much from the get-go to be sure he got enough. Wasn't what I wanted, but apparently that tongue problem is pretty rare and hard to correct (after going thru 8 different LCs and 2 MDs) and my breasts could not empty properly with only the pump. Hope your pumping goes a LOT better!!

Hope his recovery continues smoothly!! Good for you for getting him in when you did!!

[Duckie.]

Originally Posted by Hugo&Sergiosmom

Congrats on Oliver! The family pics are beautiful too!

I am so sorry he had such a rough start! The first part of your story sounded familiar as Hugo had a similar tongue problem. He never could latch and I had to pump until I had too many breast infections to continue and we had to give him formula pretty much from the get-go to be sure he got enough. Wasn't what I wanted, but apparently that tongue problem is pretty rare and hard to correct (after going thru 8 different LCs and 2 MDs) and my breasts could not empty properly with only the pump. Hope your pumping goes a LOT better!!

Hope his recovery continues smoothly!! Good for you for getting him in when you did!!

So far I'm doing great. I first had a slow start because the first couple of days I had zero demand as he wasn't eating. Now however, I am able to pump almost three ounces in one session, which is about how much he eats. I am curious to see how the future is going to play out. Will he still eat every 2 hours, or will he up his amount and decrease the number of times he eats? But then again, with hypoglycemia, he HAS to eat every 2 hours, so that will be interesting.

Some people have been really rude. A few of the nurses in the maternity ward were almost insulting when they told me to talk to a LC. First of all, this is my THIRD baby.. I know how to breastfeed. Everything they have told me (the few LC's I've talked to) wouldn't work for him because of his weird tongue habit. And unless my nipples grew an inch and turned to hard plastic, it's not going to work. The only way I can think of making it work is if I had a tongue depressor and then chased it with my nipple within milliseconds. I've also had a few breastfeeding nazi friends insist that I not give up on breastfeeding and see (yet another) LC.

My mom filed a formal complaint with the hospital. I had to call and verify her statements today, and fax over all of his medical files from Children's. In there, it stated that upon arrival his blood sugar was 38 and he was severely dehydrated. I'm not sure what will come of it, but I hope my complaint will inspire the local hospital to change their ER process. There is no reason that people with potentially life threatening conditions should sit in a chair and wait their turn.

[happyhme44]

I am so glad you guys filed a complaint. I agree with you that there is NO reason any of that should have happened. I thought the point of triage was to put serious cases ahead of the non-life threatening ones. Have you tried the nipple shield? That is similar to a bottle nipple and it gives them a chance to learn how to correctly feed. I used it for about two maybe three months until Kate was big enough to feed normally. Although if I were you I would just do what works and gives you the chance to sleep more. lol There is no need to be a breastfeeding nazi about it. Sometimes it works and sometimes it doesn't. You just have to improvise and adapt to the situation.

[Duckie.]

Originally Posted by happyhme44

I am so glad you guys filed a complaint. I agree with you that there is NO reason any of that should have happened. I thought the point of triage was to put serious cases ahead of the non-life threatening ones. Have you tried the nipple shield? That is similar to a bottle nipple and it gives them a chance to learn how to correctly feed. I used it for about two maybe three months until Kate was big enough to feed normally. Although if I were you I would just do what works and gives you the chance to sleep more. lol There is no need to be a breastfeeding nazi about it. Sometimes it works and sometimes it doesn't. You just have to improvise and adapt to the situation.

I'm going to look into a nipple shield. I've heard bad things about them as far as the baby getting addicted to it, but I think in this case, it would be a good thing if he was able to breastfeed directly as opposed to the stress of pumping on a strict schedule. I would have to do some sort of yoga maneuver in order to get it in his mouth though.. lol. Man, looking back now, the girls were so easy!

[2xPink]

Huge hugs! I am so glad he is ok now! The pictures are great! I agree with trying the nipple shield because it is way faster to clean than pumping and bottles if it works for him. I got mine at Target and used it with Addy and didn't have a problem breaking her off the shield when my nipples had healed enough. Best of luck! Congrats!

[Ditzzy]

How low has his glucose been? I'm sorry you're dealing with this. It sounds like ketotic hypoglycemia. Honestly, I would get a consult with a pediatric endocrinologist to check his growth hormone and insulin levels. ((Huge hugs)) If you need to talk, message me on FB. We live with extreme hypoglycemia (due to Mito) and I can give you some pointers.

[MommyToCooper]

Hugs to you! I'm glad you are making progress, although it's sleep deprived.

We did exclusive pumping for about 3 months before Cooper got the hang of BFing. It is extremely tiring at first but does get better. Hopefully a shield can help even more!

[happyhme44]

I think all of the bad comments about the nipple shield are stupid. I never had an issue breaking her of using it once her mouth was big enough. It taught her a proper latch and I never had any pain from breastfeeding because of it. She was too tiny to manage feeding on her own and the shield made things so much easier. I am not sure how it will be with his tongue issues though. I would try different positions to see if one is better than the other.

[Duckie.]

I got a nipple shield and tried it twice so far. He latched on a little but his tongue kept going back to the roof of his mouth. I'm going to keep trying.

I'm kind of getting discouraged from pumping. I'm exhausted, and keeping on the 2 hour schedule 24 hours a day is exhausting, and my nipples are so blistered that it hurts to pump. It's so upsetting. Formula is expensive, and breastmilk is so much better, but I'm not sure how long I can go on. Maybe I'll get over this little hump and feel better about it.

What really sucks is I wanted to set a good example for the girls. The reason I chose to breastfeed my babies is because my aunts had when I was a little girl and I loved seeing them cuddling and nursing their babies. That nurturing image stuck with me until adulthood, and now all the girls see is a bottle and pump. Bleh. :/

[Bermuda Girl]

Hugs hun, you are doing the best you can. I understand about breastfeeding is best, but can you try mixing the formula and breastmilk, like half and half? That way he is getting the good from your breastmilk, but you are able to stretch it a little farther and give you a little break on the pumping. Just a suggestion.

[lunarmagic]

Oh my goodness, what an ordeal! How terrifying. My heart was racing just reading your story. I'm so sorry you've been dealing with all of this, and I am so furious at the nurses who brushed you off and didn't notice that something was very wrong... that's their job!