The Boys

Wow! It's been quite the whirlwind the last couple days! I went in to the hospital to visit the boys yesterday morning (Monday, May 6th) and they informed me that Kooper was coming home THAT DAY and that McKay was going to Primary's THAT DAY! So we did discharge stuff all day and brought Kooper home! We then went and visited McKay at Primary's.

Here's Kooper all ready to come home!

Here's McKay all ready to go to Primary's in the ambulance.

McKay is scheduled to have surgery tomorrow (Wednesday, May 8th). If all goes well, he should be able to come home in a few days!

At first, we couldn't tell if they were truly identical twins but they look more and more alike every day! 

 McKay

 Kooper

Two steps back...

McKay has had a rough couple days. On Thursday he started acting strange (moaning/whimpering, pale, lethargic) and he had air in his catheter which was concerning. Labs, x-ray, ultrasound, and a dye test were done and they found air in his bladder. The Dr's explained that one of the only explanations for air in the bladder would be a bacteria (like E. Coli) so it was assumed he had a bladder infection. He was put on strong antibiotics, put back on oxygen, got an IV for the antibiotics and fluid, and stopped his feeds.  Yesterday he was alert enough to want to try eating so they let him have a little food. Today he is feeling better (still a little more sleepy than usual) and he is back on full feeds! Primary's is still not ready for him so we are going to try to get him better from this infection and keep increasing his feeds.

Kooper keeps working on increasing his oral feeds. He was off oxygen for 48 hours then he started de-stating after his feeds so every so often he needs a little oxygen to keep him going.

*I'll try to post more pictures soon!!

Quick update

Sorry we haven't updated for a while! We've been busy running back and forth to the hospital. The boys are both still in the NICU but doing good. They are both off the ventilator. They are on and off oxygen and just working on increasing their oral feeds (they can do about half of their feeds orally). Kooper can come home when he can do all his feeds orally (whether that's one week or three weeks is all up to him!) McKay hasn't been transferred to Primary's yet. We are so grateful that both boys are still together at one hospital.

Thank you again for all your comments, texts, phone calls, and especially your prayers!

Our Twins

McKay Beck Ferry was born at 12:30 a.m. on Sunday, April 21 weighing in at 5 lb 2 oz.

Kooper John Ferry was born three hours later weighing 5 lbs 6 oz. We are so happy they are here!

LABOR: I was induced Saturday morning at 8:00 AM because McKay's amniotic fluid was really low and the high risk doctor felt that we were at the point that the babies would be better out than in. I labored until midnight then they wheeled me to the OR room to be delivered. I delivered McKay normally but Kooper was being a stinker and they couldn't find two legs to do a breech extraction. They also couldn't get him turned around and his cord was in the way so a few hours later it was decided he needed to come by c-section. 

MCKAY:

While I was in labor with Kooper, the nurses rushed McKay back to the resuscitation room and got him ready to go with a ventilator, catheter, IV's etc. We were so grateful for the room full of professionals that were ready to help me and the boys that night! 

I don't know all the details (because I've been in and out of consciousness on pain meds!) but it was discovered that in addition to his kidneys, McKay also has fluid around his lungs so they put a chest tube in to drain it. He was placed on a ventilator/respirator to help him breathe, he has a catheter to help him urinate. The nurses are great and are taking really good care of him!  

 They are working on stabilizing McKay's breathing right now. The doctors have been working with the Urologist Team at Primary Children's and once McKay is stable and breathing on his own he will go to Primary's for surgeries on his urinary track and kidneys. 

KOOPER:

Kooper has also been on and off a ventilator/respirator to help him breathe (both of the boys are together in the most intensive NICU unit here where there is a full-time Respiration Therapist). He has had a very hard time regulating his breaths but is finally starting to slow it down and figure it out.

They extubated Kooper today (Tuesday 23rd) and he's done great so far! He was able to try out a pacifier for the first time. He loves it! Once he becomes stable with his breathing they will work with him on his feeding for a few weeks which means we'll have one boy at McKay Dee's and one at Primary's :(

Kooper is taking it easy after they extubated him. He loves his pacifier!

 We are so grateful for our beautiful baby boys!

MANY THANKS

We love this picture which was taken right after McKay was born because it shows the many hands working to save McKay right after his birth. We are also so grateful for the kindness and prayers offered for our little boys. We have felt at peace with the many prayers given in our behalf. We are so grateful to our Father in Heaven for sending us these sweet spirits.

Tomorrow...

I am getting induced tomorrow (Saturday, April 20)!!

32 Weeks!

I told myself that if I made it to 32 weeks I could write one pregnancy post so here it goes! 

First off, what is so great about 32 weeks? For women who are at a high risk of premature labor/delivery, there are a few major milestones. The first is 24 weeks: the threshold of viability with a third of babies surviving with no long-term problems. The second milestone is 28 weeks when viability skyrockets and 90% survive but long-term complications are still possible. The next milestone is 32 weeks. At 32 weeks (if everything is going well and your babies don’t already have birth defects… like bad kidneys) then they will have an excellent chance of survival without any major long-term complications. Of course, the longer I can go… the better. Twins are considered ‘full-term’ at 37 weeks so I only have 5 weeks left!

I had NO IDEA how different a twin pregnancy would be from a singleton pregnancy! When I was pregnant with Lincoln, I was nauseous for the first five months then the last four months I felt great! I wasn’t uncomfortable at all, I didn’t have to cut back on any of my activities, I worked full time until the day I delivered. I always wondered why pregnant women would complain… now I know.

I had similar nausea that I did when I was pregnant with Lincoln but the nausea still hasn’t completely subsided. From the very beginning of this pregnancy, I was more light-headed, tired, and weak. I was literally 8 weeks along and would have to sit down and rest after simple tasks like laundry, dishes, etc. There were a few times when I was in the teen weeks that I went grocery shopping and couldn’t finish. I would have to leave half way through my grocery shopping with whatever was in my cart because I couldn’t walk anymore and I was going to pass out. I started feeling a ton of pelvic pressure around 20 weeks and was terrified because I had never felt that with Lincoln. The only way to explain that pressure is that I felt like I had fallen into the splits and tore all the muscles between my legs. I felt like the babies were going to fall out. At 28 weeks I hit a wall. I was so done and I did not know how I would carry these babies any longer. My pelvic pressure turned to pelvic pain and I could not walk around or go up and down the stairs without pain. I knew I wouldn’t survive in my house (where I have to walk up and down the stairs all day) and that I wouldn’t be able to take care of Lincoln all day by myself so Lincoln and I moved in with my mom. I put myself on modified bed-rest, which consists of sitting on the couch all day. I get up to go to the bathroom, shower, or get something to eat but other than that, I don’t do a whole lot. I’m already much larger right now than I was with Lincoln at full-term. I constantly (night and day) have some kind of discomfort or pain (leg cramps, back aches, pelvic pressure, etc.)… some nights I have to sleep sitting up so my back doesn’t hurt. I’ve never had to live with constant discomfort. I know people who do and I have much more respect/sympathy for all that they endure everyday with no end in sight. I’ve also never been physically disabled and had to rely on others for the most basic tasks (cooking, cleaning, grocery shopping, etc.). I don’t think the pain is as bad as the feelings of helplessness and guilt that I can’t do all I am used to doing.

There is no way I could have gotten through the last month and no way I would get through the next month without my mom. I can’t believe how willing she is to let Lincoln and I live here. She cooks and cleans up after us and takes care of Lincoln and takes me to doctor’s appointments multiple times a week. She is such an example of Christ-like love and service. She sacrifices so much every day to allow us to be here and take care of us. She doesn’t think of herself and has no thought of a reward or recompense for all that she does. She simply loves us and wants to help. I honestly don’t know what my little family would do without her!

I still don’t know how much longer I can make it and I am so grateful every day that I have made it through another day. Like I mentioned, I have had a hard time that I’m not able to do my part and help and serve others right now but then I have to remind myself that I am serving these two special spirits as I try to take it easy and rest so that they can be as healthy as possible. I still marvel that the Lord has allowed me to be a part of providing bodies to his spirit children and allows me to raise them here on earth. I will go through any amount of pain and discomfort for that wonderful blessing.

Update

We had another appointment today. Everything looked pretty much the same as last Friday. Our doctor consulted with colleagues from John Hopkins and Houston along with the Pediatric Urologist over the weekend. They all agreed on the following:
-The urine sample to test for kidney function is not accurate therefore not worth doing.
-There is no evidence that draining the bladder in utero helps kidney function.
- Delivering the baby early (even in a singleton pregnancy) would do more harm than good.

So... we will still have appointments every week to monitor our boys but we won't do anything or know anything more until they are born (in another 8 weeks- cross your fingers that I can make it that long!).

Still waiting...

We went in for another appointment/ultrasound today for baby McKay. We don’t know much more than we did on Monday. His bladder was slightly smaller than last time (3x3cm as opposed to 3x4+cm on Monday- his brother’s was 2x2 cm). He had slightly more amniotic fluid today, which could mean that he is getting some urine out on his own. His kidneys were still filled with fluid and did not look good.

We have another appointment scheduled for Monday (March 11). The doctor will potentially drain the bladder again if it has gotten larger. Our doctor is consulting multiple doctors to see if it is worth it to test the urine for kidney function (the test is not always accurate. It is also usually done on a younger fetus (about 20 weeks) instead of a 29 week fetus so the measurements could be off which would make it even less accurate). If doctors don’t believe the test is accurate, we won’t pursue that option. We will proceed as if he still has some kidney function. This means that we will monitor him every week through ultrasound and whenever the bladder gets large, they will do the procedure to drain the bladder.

So… we will probably not know until he is born what type of function, if any, his kidneys have. If, at birth, he has any amount of kidney function then we will have options of treatment such as dialysis and eventually a transplant.

We have been so touched by the comments, messages, emails, texts, and phone calls we have received. We are even more grateful for all the prayers given in our behalf. We truly have felt peace and strength because of your heart felt prayers. Thank you!

Come what may...

Remember my blog post on advice to moms-to-be of ‘come what may and love it’? Well I guess the Lord decided to put that advice to the test…

I went in last Wednesday (February 27, 2013) at 27 weeks gestation for another Ultrasound with Maternal Fetal Medicine (the High Risk Doctors). I’ve been getting ultrasounds every two weeks and they have been picture perfect so I wasn’t too concerned about this ultrasound but… Baby A (whom just yesterday we decided to name McKay) had an enlarged bladder full of urine. The urine was also backed up into his kidneys. The doctor explained to me that this is called Bladder Outlet Obstruction. In essence there is a blockage in the penis that is not allowing urine to release into the amniotic fluid. Not being able to pee doesn’t sound like that big of a deal but there’s two or three problems a fetus runs into with this diagnosis. First, the bladder can get so enlarged that it doesn’t give the lungs enough space to develop. Second, amniotic fluid is very important to the development of the lungs and the health of the baby. If the baby can’t urinate and keep the amount of amniotic fluid to a good level, the lungs can’t develop. Thirdly, the kidneys can become damaged. Bladder Outlet Obstruction is usually diagnosed at the 20 week ultrasound but can be found as early as 14-16 weeks. When it is diagnosed that early and is as severe as McKay’s is, there’s usually not much the doctors can do and the baby has a very poor prognosis.

 

Picture of a baby in utero with Bladder Outlet Obstruction.

This is not McKay's ultrasound but this is what his bladder looked like on his ultrasound.

The doctor explained that McKay’s case is puzzling because it didn’t show up until so late in the game. Because McKay’s didn’t show up until now, the doctor was not as worried about his lungs. Even though the lungs are not fully developed, the structure of the lungs should be present. His amniotic fluid was at 2 cm (anything above 2 is normal so he is borderline on that problem). But the doctor said that his kidneys look VERY bad. He said that it is VERY probable that there is damage to the kidneys but at this point we have no idea how much function, if any, the kidneys have left. The problem with kidneys is that you can’t tell the degree of function by looking at them.

So needless to say the Maternal Fetal Medicine doctor was puzzled. He talked with multiple colleagues throughout the state who were also puzzled. One of the options you can try is to drain the bladder. You do a procedure similar to an amniocentesis where a needle is put through the mothers stomach, through the uterus wall, through the babies stomach, into the bladder and the urine is drained. The issue with this procedure is that there is a small chance it could cause an infection and put me into labor. That problem is increased in my case because of McKay’s twin brother. The doctor did not want to jeopardize the health of the twin brother by bringing him prematurely when he didn’t even know if this procedure could help McKay at all (the kidneys could be so damaged that draining the bladder can’t help him). But we went to the hospital yesterday (Monday, March 4, 2013) and we decided to drain his bladder.

The next step in the process is for us to go in on Friday (March 8) to check the status of his bladder and kidneys. If his bladder is full, we will potentially drain it again then send that urine in to test renal function (kidney function). We couldn’t send in the first sample because we don’t know how old the urine is. They need a fresh sample to test kidney function. The problem with the urine sample is that it can only tell you if there is or is not kidney damage. It can’t tell you the degree of damage (10% or 100% damage could look the same).

So… right now we wait. There’s a slight possibility that relieving the pressure in the bladder could resolve the obstruction issue (even though he would still have kidney damage). If not, we could potentially continue to drain the bladder and/or put a catheter inside him with a similar procedure (but the catheter always falls out so we would have to do that multiple times as well). The biggest concern the doctors have for him right now is his kidneys.

We are so grateful for all the family and friends that knew a little about this and have been fasting and praying for our family.  We truly have felt strength and peace from your prayers and your love.

Two bits...

Two bits of advice for mommy-to-be’s

In the past year I’ve gone to a few baby showers and at each shower I am asked to give advice to the mom to be…and I’m stuck. I’ve got nothing. From his labor and delivery, the first year of Lincoln’s life was anything but normal- from getting induced for a 36 hour labor, living at Primary’s, scheduling oxygen, planning surgeries, working full-time, working on my Master’s Degree, pumping, commuting Lincoln an hour two times a day for babysitting, etc. I have no advice about labor, nursing, scheduling, sleeping through the night, etc.

So when I found out I was pregnant, I was determined to think of some good advice for ME as a new mommy-to-be (again) and write it out for myself in a blog post (ie: be grateful when you get to hold your baby after he’s born without tubes and oxygen, try as hard as you can to nurse but don’t feel guilty if it doesn’t work, don’t put makeup or real clothes on the few days after delivery because you’ll be HOME, etc. etc.).  But when we found out we were having twins all of that advice went out the window!

So…now what advice would I give myself and other mommy-to-be’s? I’ve come up with two:

1.     “Faith in God means faith in His timing” –Neal A Maxwell

It took us a year to get pregnant. It was a long year with bouts of frustration, worry, guilt, sadness, and hopelessness. But after finding out we were having TWO, I am very grateful that it took so long. I am grateful that Lincoln is a year older, I am grateful that Russ is a year longer into his jobs (so he can hopefully quit one of them before the babes come), and I’m grateful that my sister-in-law had twins first so I could learn from her example (she has 5 month old twins).  I am grateful that the Lord didn’t answer my pleadings and prayers as quickly as I was hoping and I am grateful that He is in charge of the timing of events in our lives.

That being said, I am now dealing with the ‘timing’ of the delivery of these boys. Everywhere you look, read, or listen, you hear that the number one risk factor of twins is premature labor and delivery. So I’ve worried from the get-go that I wouldn’t be able to carry these twins as long as they need to be carried. It is still a constant worry, but if I do my part, I need to have faith in the Lord’s timing and the Lord’s plan for our family.

2.    “Come what may and love it.” –Joseph B Wirthlin

I think the hardest part of this pregnancy (except everything being TWICE as bad as the first- not kidding) is the emotional ups and downs. Our twins are Mono-Di twins meaning they are identical twins in one placenta with two amniotic sacs. Besides being a high risk pregnancy because of Lincoln’s heart defect and because of twins, the risks are even higher because they are in the same placenta. I have appointments every two weeks with ultrasounds to check on their progress.  Along with a ton of appointments (which I’m grateful for to monitor them and me!), every weird feeling/pressure/pain I experience makes me worry that something is wrong or that I’m going to go into labor. Along with the worry, I have guilt if I do too much or too little throughout the day. If I do too much (cooking, cleaning, appointments, etc.) I feel guilty that I’m not resting enough for the babies. If I do too little I feel guilty about not being a good mom, wife, friend, etc.  We’ve also been discussing our living situation. We are in a two-room condo right now and are debating about moving into a little bit bigger condo, moving to a town where Russ is doing a lot of work, moving in with my mom for a few months, etc. Forever I was really stressed about where we were going to be (and the process of moving right when the twins come).

Through all of this, I’ve learned that I just need to take a big breath and say “Come what may and love it.” Come what may- if the twins are born early and have to stay in the NICU; come what may- if I have to go on bed-rest; come what may- if we move right when the twins get here; come what may- if my house is a mess and my husband has nothing to eat. Come what may- and love it!