July 27, 2009
July 22, 2009
July 21, 2009
Well, that was my limit. Momma Bear had to protect her little cub. I told them I was not going to allow them to poke his little veins anymore, they could treat him orally or with an intramuscular antibiotic. I also decided that he was going to pee in a cup the old fashioned way, even if I had to wait all day for it. I just had to wait a few minutes after his next feed and promptly handed the specimen over to the nurse who gave him a one-time dose of the IM antibiotic.
Overall, we have not been satisfied with the care Ambrose has received during this stay. Pediatrics is a world away from Neonatal, it has a very "do-it-yourself" feel to it, and it seems as though the right hand doesn't know what the left hand is doing. I've taught myself how to use their enteral pump, because it doesn't appear the nurses intend to keep his feeding schedule. His plan of care changes as often as the attending staff. We are having to be very vigilant as Ambrose cannot be left alone, because it seems the nursing staff only monitors him electronically from the nurses station. The other day as Ryan re-entered the unit after a quick trip to the lobby he could hear Ambrose screaming and his monitor alarming practically from the elevator. One of Ambrose's nurses happened to be passing by the room and casually pointed out to Ryan, "I think that's your baby crying." He wanted to respond, "When I tell you that I'm leaving the floor, that makes him your baby!"
Happily, I have a wonderful mother-in-law who is keeping the rest of our brood so I can hover over Ambrose 24/7. And he has had lots of visitors from the Nursery ICU, including all of his doting primaries.
We also got the results of the hip ultrasound from Friday, which showed that Ambrose suffers from hip dysplasia on his right side, possibly because he was in a breech position in utero. Treatment for this is simply to wear what is called a Wheaton-Pavlik harness for three weeks, which will hold the legs in a position which should correct the joint. It's super dorky looking but has already provided some comfort. Charlie will be checked out too, because Ambrose doesn't want to wear a goofy looking harness all by himself.
July 19, 2009
July 18, 2009
He was finally admitted to the Pediatric Unit around 4:30pm with Respiratory Distress and Hypoxia. He had a number of tests performed on him, which he seemed to tolerate pretty well. He originally discharged on 1/8 liter of O2, but he was bumped up to 1/2 lpm in the hospital. Gina arrived around 7pm to relieve me and will spend the night with Ambrose. Hopefully, he will feel better in the morning and they will begin to wean his O2. Before I left he looked really well and seemed happy, even smiling at times.
One thing the doctor mentioned was that it isn't uncommon for preemie NICU babies to return to the hospital about a week after discharging. I think I was more comforted by the result of Ambrose's x-ray, which showed that his lungs had no sign of pneumonia. I was told you could still see where the damage was from his chronic lung disease, but, overall, his lungs looked good.
We'll keep you posted on his status. Thanks for all the prayers and support. It's all greatly appreciated. Ryan
July 15, 2009
The last few days have been exciting and crazy in the Iker house! We're so happy to have Ambrose home with us. He's doing really well and has even gained a few ounces since his discharge. The feedings are pretty tricky though. He eagerly takes about half of each feed from the bottle, but tires easily and takes the rest through the G-tube. We're still trying to find the right balance with the bottle and the pump. He sleeps most of the day and night, with a few active waking hours during the day when he smiles and talks and looks around. He enjoys watching the older boys run around and wrestle on the floor, but cringes when they scream or shout! Well, we cringe too, so he'll have to adjust!
He had an appointment with the pediatrician on Monday and will go back again next week. We will continue to discuss Ambrose's feedings and his oxygen and work out a plan of care for him at home. Our priorities are to wean him from the oxygen and get him to take more from the bottle. If he's able to gain more weight, then he'll create new lung tissue, which will grow new alveoli and assist his breathing.
Gina came down with a cold a couple days ago and now Charlie has picked it up. He was pitiful this morning, but has been sleeping most of the day. Hopefully, he'll beat it quickly! Charlie is such a sweet little boy. He smiles and giggles when he sees us or when he's tickled. Grandma Iker found his tickle spots...shoulders and thighs! Ambrose is also smiling and cooing. He recognizes our faces and enjoys having the older boys talk to him.
Ambrose also started home care this week. He had his first nursing visit on Tuesday. The nurse will come every week to check on him and make sure everything is well with his Mic-key button.
Upcoming appointments include:
weekly pediatric, and at-home nursing visits
AZ Early Intervention will be evaluating Ambrose for developmental disability,
opthalmologist for the twins because their eyes tend to cross sometimes,
hip ultrasound for Ambrose, his right hip is a little tight, possibly because he was breech,
follow-up with the G-tube surgeon, although the ped and the nurse said it looks really good,
and the triple-whammy appt. for Josef's 2-year and the twins' 6-month well check.
We have also been interviewing nannies to stay with all these boys when I return to work on August 10th. On the job training will begin Aug 3rd, please pray for her, her day job will be much more challenging than mine.
Overall, it's quite a challenge, but we're extremely happy to have all the kids home. Our key is to find the right balance with Ambrose, the three others, and with ourselves. Once we find our rhythm, then we'll have more peace of mind. We're still in need of prayers and we continue to keep all of you in our prayers. On a side note, we're in the middle of a 54 day Rosary Novena for some spiritual assistance.
July 11, 2009
Praise the Lord! After an 8 hour visit to the hospital yesterday, we were finally able to bring Ambrose home. We were taught how to use the Oxygen tanks, Pulse Oximeter, and feeding pump. The day seemed to last forever. We were very anxious for the day to arrive, but the hours passed so slowly. We finally left around 6:00pm or so. While leaving the NICU was a wonderful thing, we also felt sad at the same time. We're glad to have our sweet little boys home, but we will miss all the incredible people we met...especially our primary nurses...Becky, Stephanie, & Terri. They made us feel comfortable and gave us the hope we needed during our long stay at St. Joseph's.
Because Ambrose was intubated for so long, he has developed an oral aversion, which means we have to take great care to provide positive feeding experiences for him so that he will overcome his aversion. So when it was time for Ambrose to have his first feeding at home, we were prepared for him not to take the bottle and just feed him through the G-tube. Well, to our surprise, he readily took all 90cc of his feeding from a bottle. He was so happy and comfortable while he ate. We were extremely surprised and pleased. During the night he is usually too sleepy to bottle feed, so we are feeding him slowly and continuously on the feeding pump.
Ambrose and Charles slept soundly through the night. I think they slept until nearly 8am! Our other two boys were staying at Grandma Iker's house so we could get familiar with all the equipment. The big boys came home today and we had to have a serious sitdown with them to explain the equipment and why we shouldn't swing on the IV pole. So far the IV pole is still intact and the prongs are still in Ambrose's nose. I do recall seeing some Legos soar over him, but they've all been accounted for now.
Since our little journey began when Gina's water broke December 16, we've had an incredible outpouring of love and prayers from friends, family, and many others that learned of our twins. God has really placed incredible people in our life. We still recall the horrible feeling hours after Ambrose was born when it looked like he wouldn't make it. As difficult as it was, we asked his neonatologist to please let us know when enough was enough, when no more would help so that we could say our final goodbye. The doctor told us that, at that moment, everything had been tried and he wasn't sure if Ambrose would make it. He said that the nurse was going to give him Epinephrine and if that didn't work we would just wait and see if his body would recover. The team stayed with Ambrose for hours trying to keep him breathing and his heart beating, but none showed that they were ready to give up on him. Not once did anyone in the NICU give us a reason to lose hope, especially when the situation appeared hopeless.
God worked wonders through and for the twins. It's humbling for us to think about all the people who spent time praying for our family and our little guys. We wish to thank everyone that helped us throughout these months. It's been incredibly stressful on us. The Devil would like to have had us give up a long time ago, to despair, but we couldn't have made it without all the prayers said for our family. We are grateful for all the Mass intentions and Prayers of the Faithful. Thanks to all of you who had Masses said for the boys, all of you priests who said Mass for them, and all the religious communities who have been praying for them, especially the Norbertines at St. Michael's Abbey (thanks to frater Benedict) and the Priestly Fraternity of St. Peter (thanks to Father McCambridge). We thank all the prayer groups, pro-life groups and mother's groups, especially the Mothers Group at Our Lady of Mt Carmel! We also are grateful for all the rosaries said for the boys and know that Our Lady was always watching over Ambrose.
Please continue to keep us in your prayers. Ambrose still battles with the oral feedings and still relies on supplemental oxygen. He needs to eat so he can grow new lung tissue, and overcome his chronic lung disease.
God bless all of you.
July 09, 2009
Finally! After 5 months Ambrose will be discharged Friday. Ryan and I will be at the hospital most of the day learning how to properly use all his gear. He will be discharged on 1/8L oxygen, nasal canula. He can take thickened milk orally, but the bulk of his feeds will be administered by the g-tube with a kangaroo pump.
Here's what Ambrose's new belly button looks like:
July 06, 2009
Ambrose came out of surgery about 11am and returned to the NurseryICU alert and sucking on his pacifier. The surgeon was able to do his circumcision and correct his "outie" belly button while she was at it. He was extubated in the OR and returned to the same oxygen flow as before the operation, so that was a relief. He will resume feeds tomorrow morning, starting out small, but increasing the amount quickly. The doctor says he should be able to come home by the weekend ...we'll see.
July 05, 2009
Yes...Ambrose will have a G-tube placement surgery on Monday morning at 9am PST. The procedure will require him to be intubated again. We hope that he will be able to be weaned off the vent very quickly.
The only issue keeping him in the hospital now is his feeding issues. He is not able to bottle-feed all of his feedings and uses a pump for whatever milk he is not able to consume. He will, hopefully, be discharged within a couple weeks. He'll be on oxygen at 1/8 liter per minute and have a G-tube with a Mic-key button in place. He will probably also need a Pulse Oximeter. We'll be trained on the use of all these in the next week. Right now we're very concerned with the procedure and the idea of him being reintubated.
Ambrose looks very good now. He's awake most mornings and enjoys visitors. He really enjoys when we bring the other kids with us to the hospital. The chaos keeps him pretty occupied! He recognizes our faces and has even produced some smiles and cooing. You can bet we're really excited to get him home. We think he'll do much better in a home environment.
Please keep us all in your prayers, especially little Ambrose. It's a very stressful time, but I know everything will work out for the best. Also, since neither of us are able to support the family alone, we're desperately looking for a nanny to come watch the kids beginning in August. Gina has to return to work on August 10th (she hasn't worked since December). Let us know if you have any advice or connections or know of any agencies where we can hire a nanny.
Thanks for all the prayers and support. We're so close to discharge and we are really excited. The boys will be 5 months on Wednesday! Wow!
Ryan & Gina