The Latest News on Emily

Hello all,

Just wanted to update you on Emily and let you know about the news that we have received today.

Yesterday, I talked to the cardiologist and here is the scoop in the plainest English I can muster): As Mike mentioned, they are not concerned about the valve in Emily's heart that did not close - the opening is not big enough to cause issues for her. However, when they did the echo-cardiogram they did discover something odd. It looks like she has a Partial Anomalous Pulmonary Venous Return. That means that one of the veins that is supposed to go from her lungs to the left side of her heart appears to be going to the right side of the heart instead. This causes the right side of her heart to work harder than it should and can cause it to get bigger than the left side. Many people live with this condition for a long time & don't even know that they have it. Since Emily's symptoms are not that serious they are not going to take action right now. She may need to have this corrected surgically as she gets older (maybe when she is 6 or 7). So in the meantime, Emily will have one more doctor to visit on a regular basis as the cardiologists keeps an eye on her heart to make sure things do not get worse.

The surgeon has checked on Emily and says that she looks good - she has been healing well from her g-tube & nissen surgery. He may change the tube that she has before we are sent home, but that is a minor thing and will not hold us up for long.

Now on to the good news...........

Emily will be able to go home on Monday as long as she continues to gain weight on Saturday & Sunday. Mike and I have talked about sneaking her some extra feedings just to make sure this happens! As of last night she weighed 10 lbs. 10 oz. - she put on weight for the first time in quite a few days. She has been losing weight since the surgery even though she has been eating more than 4 ounces at each feeding. They switched her formula to a soy formula. So far this seems to be helping with the weight gain & some other issues she has had (excessive gas & explosive diarrhea - YUCK!).

One thing that we do ask that you pray for (besides her gaining weight ), is her bottle feeding. Since the surgery she has a lot of excess secretions in her mouth & this makes her gag and retch. Because of the nissen she can not throw up, so when she gags it is pretty horrendous to watch. She does OK spitting it out or sometimes swallowing it, but it seems that she will have to learn how to handle this on a long term basis. We think this issue has caused her to lose interest in bottle feeding - she seems to think that she will gag whenever you stick the bottle in her mouth. So we need to work on this with her and the speech therapist. Our hope was that she would do well with the bottle feeding once she went home and right now we are not sure how this will go. So we ask that you pray about this. We are thankful that she can still get the nutrients that she needs through her g-tube & this won't affect her health, but it would be nice if she would eat from a bottle and eventually have the g-tube removed if that is what God wills.

Mike and I have talked a lot recently about how thankful we are. Spending time in the NICU helps us to realize that we really don't have it so bad (although it may sound that way to some of you). God has blessed us with a beautiful girl and we are so grateful. She has some challenges ahead of her, but they are nothing compared to the struggles a lot of others have. And we know that the Lord is with us every step of the way - that brings us such comfort!

We do thank you for all of the support, prayers and love that has been poured out on us. God has provided for us in every way possible. We will continue to keep you posted about Emily's progress.

In HIS strength,

Dawn

HE is Still Sovereign!

Hello all,

I'm sure by now some of you are thinking that we are here taking care of Emily in her new home, but that is not the case. As a matter of fact, we don't know when (again) she will be able to come home.

She had surgery last Thursday and all went well. She was recovering great and they fed her through the tube earlier than anticipated. It was looking great for her to come home on Monday or Tuesday (today [Tuesday]). I sent Dawn to the hospital on Monday with directions to ask everyone what we need to do to make sure that she comes home tomorrow (which was today [Tuesday]). She went there anticipating Emily coming home either today or tomorrow and was hit with a blow that took her breath away. The doctor told her that Emily was breathing too fast and her heart rate was too high. She then proceeded to tell her that there may be complications with her heart and she may need heart surgery. Too say the least, this took us by surprise. They never mentioned any of this before...and we spent the weekend getting the house ready for her to come home!

A brief explanation...when the baby is in the womb, it gets the oxygen for its blood from the mother. Because of this, there is a valve in the heart to divert some of the blood away from the lungs and back into the aorta. After birth, this valve closes and the lungs do the job of getting the oxygen into the blood stream. In Emily's case, it was thought that this valve was not closed; therefore, her blood was not getting the oxygen it needed and so she was breathing heavy and it was causing her heart rate to go up.

Yesterday, the cardiologist did an ECHO and determined that the valve, although not completely closed was not a cause of concern. The heart surgery would have been to close this valve, so the threat of heart surgery has been eliminated! Today, they did an EKG and we are hoping that will give us (and them) a better understanding for the increased rate of breathing.

Needless to say, every day in the [Last Name Deleted for the sake of security] household is an adventure. We never know what to expect from one day to the next. The only thing that we are sure of, is that God is in control and He knows what He is doing. He is allowing these situations in our lives so that we will continually depend on Him...and we do!

So as for now, the G-tube is installed and she is eating fine. We are still trying to feed her with a bottle, but she has been a little temperamental with this. Some days she does good and other days, not so good. As I mentioned, we will know more tomorrow when we get the results of the EKG and we can get a better understanding of where we need to go from here.

Another concern has been her weight. She lost weight over the weekend, mostly because she had surgery and was eating far less than normal. Her food intake has increased and we are waiting to see if her weight also increases. It seems that the doctors think she is really cute (just like we do) and they don't want her to go home. She will get to come home some day, we just don't know when.

I know that it seems like we have a lot of drama here in the [Last name deleted] household...and we do; but I don't want to give the impression that we have it so bad. Dawn and I were talking about how blessed we really are. In the NICU there are babies that are far worse off than Emily and parents who never get to take their child home alive. We spend time with her every day and enjoy every minute that we get with her. There are some babies that have single mothers who have to work and never get to visit their child. There are many people who have it a lot worse than we do and we never want to forget that! We can get so caught up in the pity party that we are in, that we forget how good we have it.

Today, take a look at all the ways that God has blessed you and give Him thanks and praise for every little thing...even the next breath you take, for even that is a blessing from Him.

Have a great day because this is the day that the Lord has made, let us rejoice and be glad in it!

All for His glory,

Mike
Eph 2:4-7

How am I - The Physical Stuff.

Today I went to see my gynecologist. She did an exam and confirmed that everything is back to normal. I paid $25 to lose a little dignity and be told what I already know.

I really like my doctor, though. She delivered Ben and saw me through to Ellie's birth (she wasn't on-call when we got to the hospital). I'm very sad that she has dropped obstetrics!

One of the reasons I like her is when we had our first appointment for Ben she asked if we would want all the blood tests they offer for various abnormalities. She even explained that more often than not the tests have false positives. Then she said if we would not "terminate" (medical speak for "kill my baby") based on the tests then there was no point in doing them. And that was the end of that. She never brought them up again. Much different from the doctor I had with Will who looked at me like I was crazy when I said I didn't want the tests.

Then there's the fact that she's "let" me try to VBAC. Twice. Not that she was terribly helpful during labor but she didn't fight me on it.

Today clinched my liking her. As we discussed the miscarriage she made a point in saying that it wasn't my fault. I didn't DO anything to cause it and there was nothing I could have done to have prevented it. I haven't wrestled with any of those issues but I thought it was great of her to say that anyway. She also made a point of saying that a miscarriage is a loss. She affirmed that this baby was important and losing the baby is a big deal. I SO appreciate that.
Dr. Manning and her staff were just the right amount of sympathetic and understanding without being overly so. At least it was the right amount for me. = )

She asked if I had called their office when I started spotting. I told her "no." I knew there was nothing she or the hospital could do for me so I didn't see the point in all the drama. I was better off at home in my own bed where I could actually rest. Not to mention a trip to the hospital would have cost me $100! Just for them to say "Sorry, go home and go to bed." No, thanks. I'll keep my money. Plus, there's the little issue of babysitters.

After my explanation she said I was "tough" and agreed that I did the best thing. That there was nothing she could have done for me. She also said one in four pregnancies end in miscarriage during the first trimester. Guess I'm right on for the statistic. She added that having a miscarriage does not increase your risk or likelihood of having another one.

What does all this rambling mean? I'm fine. My body worked the way it's supposed to under the circumstances. My future risks are no greater than they were before. And according to my doctor, I made good decisions. It's nice to hear a doctor say what I've been saying all week. Even if it did cost me $25. And after birthing 3 babies it's not like I had much dignity left anyway. = )