Two steps forward then one step back

Hey, everyone. I’m posting another blog because I’m hearing through the grapevine that people want updates. So I’m posting them here so my poor mother and mother -in-law don’t have to give out the same info over and over and over. I know it’s exhausting for me to relay the same information time and time again; so what better way to get it all done with one fell swoop and answer everyone’s questions?

This week has been a somewhat hard week. A few days ago I got a phone call from one of the NICU doctors. He said they were all concerned about Abigail, because she was requiring more and more support to keep from having “spells,” which is basically when either her oxygen or her heart rate drops (their brains are still immature enough that they “forget” to breathe sometimes, especially when they are asleep. Eva especially seems to struggle with this, and the machine has to do that job for them.) He stated that this was an indication that something else was happening. So after doing some tests, they determined that she had pneumonia. It’s a little different than what we think pneumonia is. Because the girls need support for breathing, they have to have a tube run down their tracheae. These tubes can harbor moisture, and is a prime location for bacteria to set up residence. I wasn’t too comfortable hearing this, but the doctor (and later that night their nurse, Liz) assured me that infection is very common in the NICU. He prescribed a 7-day treatment of antibiotics to take care of it before it got bad, and it seems to be doing the trick. So we can tick that one off the list. Then the next day when I went to visit the nurse told me that a respiratory tech-in-training had left one of the doors to Abigail’s isolette open, which made the heater kick in and raise not only the temperature of her isolette but also her temperature. That one did irritate me. I understand things are going to be hard for my girls for a while, so I don’t need any careless mistakes making it worse. I did complain to the doctor, and thank goodness her nurse that day, Nicole, caught the tech’s mistake. When the tech came back to do some stuff I made Kevin watch her to make sure she didn’t do anything else to harm my baby while I went to go pump. Well, later that evening, I got ANOTHER phone call from the doctor to inform me that Abigail had extubated herself: literally, she yanked the tube going into her trachea out of her mouth and it slipped into her esophagus. It wasn’t an emergency, but that girl is definitely Kevin’s daughter. Anyway, as a result it blew some air in her tummy, so they had to put a tube in her belly to suction the air out. That also meant they stopped her feeds. It means that in the past few days she has lost a little weight and is down to 1 pound 9 ounces (down from 1 pound 12 ounces.) But on the flip side, her blood sugars have stabilized, and that has been an Achilles’ heel for her in the past. Plus the traumatic events of that day caused her to have huge poop, which is something both girls have a problem with. Then yesterday I found out that she would get an x-ray today to examine her belly. I’ts quite large (on Eva, too) and Morgan told me the doctors were suspecting something called pneumatosis. I wikipedia-ed it, and it indicates something far more serious called necrotizing enterocolitis, which is basically when intestinal tissue dies off. It sounded yucky and scary, but after the x-ray it came back negative, thank goodness. It looks like things are settling down for her now, and she will restart her feeds tomorrow. She is a very active little girl, opening her eyes every time her daddy and I visit. She knows our voices. 🙂 Activity is good since it means she’s not sickly.

Now it’s Eva’s turn to shine. Like I previously said, she also has a large belly but they are keeping their eyes on it. She is now at a scant 1025 grams (2 pounds 4 ounces.) I kid, of course. She is growing just beautifully. Now that she is over 1 kg we can start dressing her in real clothes! Grandma has already bought the girls outfits, and I can’t wait to dress her. I’m fighting a fever now, and when there is any indication of sickness we are not allowed to go down. Most of the babies in the NICU have no immune system, and I don’t want to possibly infect any of the babies there, let alone the girls. So once I’m all better I’ll go down and dress her and get some great pictures. 🙂 She also had a huge poop yesterday (finally! Who’d have thought poop could be so exciting?) and is doing so well on her vent settings that she will most likely get extubated in a couple of days! This is HUGE. She will have to wear a CPAP, those nice little oxygen tubes that stay in the nose. She didn’t like those last time, so pray she likes them better this time, because her risk of infection goes down if she’s on the CPAP. Also, she’s going to start taking some things orally instead of intravenously, which is also a big deal. Once she’s stable on oral intakes, her PIC line can come out, which is also a place that infections fester. If she can get both of those removed, it greatly increases her chances that she won’t get an infection. Abigail still has some catching up to do, but she will get there.

So keep praying for the girls! They are moving along quite nicely, and having both of them have a good day today really lifted my spirits. Conversely, my family could use some prayer for my Uncle Frank. He went into the hospital the day after the girls were born, and although it was just for a checkup it has developed into something significantly worse. He was diagnosed with cirrhosis (not due to alcohol) and had extremely high levels of ammonia in his system. The medical staff has been able to get most of it out of his system, but the fact that he is still unresponsive makes them suspect something else like a major stroke has occurred. A healing would be wonderful, but we don’t know what will happen. In the weeks leading up to my hospital stay he called me several times to chat, which was very unlike him. I just pray God’s will be done; that He will be glorified, but especially that my uncle found peace in a saving relationship. We will hopefully know more about his status tomorrow.

So that’s it! Thanks for your thoughts and prayers for the girls. I’m hoping everyone will get to see them after the several months of required isolation we will have to deal with when we get them home. I’m sure they can’t wait to meet all of you! Love you all. Hugs, too.

Advertisements

Another blog on the misses!

It’s been a couple of weeks since I last updated everyone on how the girls were doing. So I’ll do this periodically until they come home, and then when I get the opportunity to update everyone on their antics I certainly will. 🙂 For those of you who don’t have experience with the NICU I’ll try to expand on what information you may already have. It’s not as critical as I had been led to believe. Yes, the girls have good days and they have not-so-good days. But nothing that has given us any real cause for alarm. Thankfully, they seem to switch when they have their problems; i.e. Abigail has a problematic day and Eva has a smooth day, and vice versa.

What’s amusing for us is the nurses and doctors in the NICU treat some things as more grim than they turn out to be. I wrote on the last post about Eva’s brain hemorrhage scare. We got pulled aside a couple of days ago by the nurse practitioner that they needed to x-ray Eva’s belly because they were very concerned that its large size was an indication that there was a hole in her intestines and air was escaping into her body. Needless to say, this is a very bad thing. But Kevin and I didn’t worry this time; we are confident God is doing a great work through our girls still. So we sat and waited for the results of the x-ray; it was nothing but gas. The same exact thing happened to Abigail today. Also, I was told when I arrived at the hospital this morning that both girls had a heart murmur that they had heard, and they both were going to get echocardiograms to confirm that they both had PDA. So again, I waited for what I was sure would turn out to be nothing. And once again, God didn’t fail me. Both girls still have no PDA. So my advice to anyone who ends up having a baby in the NICU is to listen to what they have to say, but take it with a grain of salt. They are very knowledgeable, so I feel good about the girls being there. And we do have something going for us: the promise that God is taking care of our girls. Plus, we know that any freaking out on our part can’t be good for the girls.

And both of them are starting to get so big! As of yesterday Eva was back to her birth weight: 1 lb. 12 oz. Abigail has already surpassed her birth weight and is at 1 lb. 9 oz. Still very small when compared to a normal baby, but they are bigger than when they were born. They would have been 28 weeks yesterday. And both of them have opened their eyes! We love spending time with them and holding them. And God answered another prayer: they have a primary nurse during the day and one at night! Thank you, Morgan and Liz! God totally had His hand on that one. 🙂

Keep praying for the girls. These next few months will be hard. Driving to the hospital back and forth is exhausting, not to mention the pumping I have to do several times a day. But we are very blessed with our girls. Thank you everyone for your prayers, love, and support!

How the girls are doing

Just a quick update to let you all know how the girls are doing. We know so many of you have lifted them and us up in prayer, and we can’t tell you how much we appreciate it. God has done amazing works through our daughters already, and I’m blown away by how many people have invested in them, whether it be doctors, nurses, family, friends, friends of friends, etc. So here’s the latest: both girls are doing just great. Honestly, both Kevin and I thought that their lives would be hanging in the balance on a daily basis, and that’s just not the case. That’s not to say something bad couldn’t happen; it certainly could. But technology and medicine have advanced so greatly that really the hardest battle we are having to fight is patience. After holding both of my daughters for the first time I was ready to take them home. But three months is a blip in the grand scheme of things, so we will just have to take our lesson as it comes. 🙂

So far we have had really only one scare. A few days ago one of the doctors from the NICU sat down with us and told us the platelet count for Eva had dropped by half, and she wasn’t sure why. Her top suspicion was that Eva was experiencing a brain hemorrhage, and if this was the case there was nothing that could be done. They would ultrasound her head in the morning to get an answer. We were shaken, and we went back up to our hospital room to pray and try to get some sleep, but it was difficult. I had to go over all the things that God had already promised us many times and just trust that whatever the case may be that He was in control and knew best. We woke up early the next morning and went down to see Eva, and they told us that the ultrasound revealed no bleeding. Praise God! They thought that maybe her count ended up being low due to drawing too much blood for tests. Eva had to get a blood transfusion to restore her blood count level and now she is doing fine. She has a slight heart murmur (called PDA) that is getting treated with medicine, and if it doesn’t resolve then she may need surgery, but it’s very safe and it looks like it is in fact resolving. Abigail, of course, is passing through with flying colors. Everyone is amazed with how well she is doing because she is noticeably smaller than her sister. One would think she would have more problems being the smaller girl but she is just doing great. Holding both of them was such a treat, and I can’t wait until we can bring them home.

Another great thing that God has done with the birth of these girls has been the restoration of relationships. I won’t go into too much detail, but people are coming back into our lives that we haven’t seen in YEARS, as well as some other things that have occurred. It’s been wonderful, and I can’t wait to see what God has in store for us next! Thank you again everyone for your thoughts and prayers. I can’t tell you how much they mean to both Kevin and I.

They are finally here!

We made it! I thought I’d go ahead and post another update since obviously our status has changed completely within the past 24 hours. And many of you already know that by now. But I do want to write some of this stuff down for 1) honesty and 2) posterity. I still haven’t changed my mind that other women need to know some of the real deal about this thing we call pregnancy, and now I’m including delivery. 🙂 Plus it is a welcome distraction to write this since I’m in a fair amount of pain and the morphine has worn off.

Every day that we have been here we have gotten confirmation through daily ultrasounds and monitoring that both girls were just doing so excellently well, not to mention a few words from the Holy Spirit that He was taking care of our daughters. Believe me, sometimes we had to cling to those things. Anyway, earlier this week we had a new perinatologist come in and give us his opinion based on his medical expertise and experience that we wouldn’t make it much further in this pregnancy. He specifically said we would be lucky to make it another week, simply because the bleeding was such an abnormal thing that he was greatly concerned about. It had been treated too casually and had simply gone on for too long. And he was right. I had bled consistently every night for about four weeks, and this wasn’t just light spotting. So I gave the news to everyone and was trying to mentally get ready for an eventful week. Plus, I felt like this was just one way that God was hinting that the pregnancy would soon be over. A couple of times throughout this last week during some heart monitoring sessions a couple of the nurses made comments that, “The girls both seem older than their actual gestational age.” When I asked them what they meant, I was told that babies at this stage have heart rates that are fairly stable, meaning they don’t really fluctuate greatly between 120-160 beats per minute. In fact, babies’ heart rates don’t really start to behave that way, accelerating and decelerating, until roughly 35 weeks along, and it basically has to do with how far their nervous systems had developed. I was stunned. Yes, the girls had gotten steroid shots to quicken their development but quite frankly, their hearts had always done that since they started getting monitored. The nurses’ comments were casually made, but me being a mother and a Christian “tucked all these things into my heart,” (Luke 2:51.) For me it was the Lord nudging me again and reminding me that these girls were not were not going to make it to term.

The next day we went and got our big level II ultrasound so we could get all the specific numbers on the girls, and, no surprise, they were doing great. They were doing so great that Dr. Aisenbrey said we might make it to 28 weeks after all. It was great news that we excitedly shared with many of you, but we weren’t forgetting all the little clues God had given us. Remember, He hadn’t revealed when the girls would come, just that they would probably be here early. So we spent the rest of the day just relaxing when I had another bleeding episode around 6:15 that evening. It wasn’t an abnormal amount, but remember the bleeding had occurred for four weeks at this point. And the amount was substantial enough that Dr. Gordon, who is a pretty laid back guy, felt the urgency to send us back to Labor and Delivery for the fourth time for constant monitoring of the girls. At least this time I got to take my own bed from Maternal Special Care with me, which was far more comfortable. 🙂 But constant monitoring makes for a sleepless night, and that in itself makes being in L&D no fun. Throughout the night I had a couple more bleeding episodes, which I informed the nurses of so they could document it for the doctors. Come the next morning (yesterday) Dr. Aisenbrey walked in and informed us that we were quickly approaching the point of no return. It was basically only a matter of time until I had an incredibly serious bleeding episode that would be detrimental to both me and the girls, and he felt we were only days away from that point. We could try and buy a couple more days and wait to deliver the girls since at this point every day counts, but if we took that gamble and lost we would also lose any days that we had tried to gain with the girls. And he also said no doctor would have a problem throwing in the towel at this point. But he did leave us with that choice, so Kevin and I discussed maybe trying to last one more day and seeing how it went. Then Dr. Gordon came in and told us our situation had been on his mind the previous night, so much so that he had lost sleep over it (it reminded me of Xerxes’ sleepless night in the book of Esther…isn’t it great how consistent God can be?) He strongly felt we needed to deliver the babies that day, and after consulting with Dr. Aisenbrey on the wisdom of that he informed us he wanted to set up a c-section for noon unless we strongly objected to it. And he said that waiting one more day wouldn’t be of much benefit to the girls. To have both doctors independently come to the conclusion that girls should be delivered that day was all we needed to hear, and we told him that he could go ahead and set up the surgery. We had already come to a peace about it several days prior, and Kevin made the point that trying to keep them in to avoid a long term disability was irrelevant since God has already determined the path they will walk. We let family know right away, and many of them came down to support us and pray with us and await the births of the two newest family members.

So I was soon whisked away and prepped for the c-section, and I would be lying if I said that I wasn’t a little scared about having the surgery. I wasn’t expecting it to go other than smoothly, but it was still something of a venture into the unknown, which can be daunting. The doctors and nurses were all incredibly patient with me, but my nerves did cause me to have a few more bleeding episodes, even one right on the operating table. Dr. Gordon started rushing to try and get the surgery started before it was too late, and all the bleeding episodes just prior to surgery were confirmations that Kevin and I had made the right decision to not put off delivery any further. As far as the c-section went, all I can say is it was a very odd experience. It’s true that they numb you up so well that you can’t feel any pain, but you do feel all of the tugging and pulling that goes on. And the anesthesia made me drowsy, but I was determined to stay awake. Kevin was an incredible support and just kept reassuring me the whole time. The anesthesiologist was standing right at my head and was able to tell us exactly what was going on, and they actually got both girls out very quickly. We heard Eva cry as she came out, and it was such a relief to hear it that I started to cry, too. Of course, the NICU doctors whisked them away before we could see them, but we had been expecting that so it wasn’t upsetting. Getting me sewn back up took longer and was an uncomfortable procedure, though it was never painful. Once they were done Dr. Gordon’s assistant told me I had a nice flat tummy again, and Dr. Gordon told us he was able to find out that Eva weighed 1 lb. 12 oz. and had Apgar scores of 8 and 9 and basically was breathing on her own, which almost never happens at her gestational age. He wasn’t able to find out Abigail’s since the NICU people kicked him out, but it was so great to hear that our daughter was doing so splendidly.

At that point I was whisked away to a recovery room, and not much happened other than a visit we got from one of the NICU doctors, who informed us that both girls were doing so well. We found out that Abigail weighed 1 lb. 4.8 oz., which means she didn’t gain as much as her sister, but it was still enough to ensure a better chance of survival. Of course, we already knew she would be okay. 🙂 I also got my first opportunity to pump, just to try and get my body started on making breast milk, even though the girls won’t be having that anytime soon. So after that I got wheeled away to see our daughters for the very first time. They are so precious! Still very small, but bigger than what I had pictured. And the nurses there reiterated how wonderfully both of them were doing, and that they had been quite active initially when brought in. All great news to our ears. Kevin managed to get one picture of each girl, and we passed them along to family. Then we got moved into our new room for post delivery and settled in. Dr. Gordon came to see us and just let us know with how pleased he was with how everything went. He also told us the NICU had informed him that Abigail had already made meconium and since that too is not something that typically happens for her gestational age it was probably an indication that she had swallowed some blood in utero and may have excreted it in her sac, which would have been extremely dangerous for her. So it was definitely the right decision to deliver when we did. After his visit we settled in to watch the Lobo basketball game (finally! Hooray!) when our nurse told us we would probably be able to make another visit to the NICU and see the girls if we so desired. We decided we wanted to see the girls again, and it would be a good opportunity to get me moving around, which I needed to start doing. But let me tell you, it was much harder than I anticipated. I was in an incredible amount of pain (even with morphine) and just making it across the room to a wheelchair was a Herculean effort. But I made it! Kevin wheeled me down and we got to see the girls again, and they are so tiny! The nurses said they are still doing fairly well; they will have ups and downs while still in the NICU but that there wasn’t anything alarming that was occurring. We didn’t stay too long since we were wiped, but it was just so nice to see them again. We came back, climbed into bed (which took me a while to say the least) and got some sleep. I didn’t get much because I’m still in quite a bit of pain, and it will definitely take me a while to recover. But Kevin is sleeping as I type this, so I’m glad he’s able to catch up.

I’m sure we will be seeing the girls again today. We are so blessed to call you all friends, and I’m not sure how well we would have fared if it hadn’t been for your thoughts and prayers. We give God all the glory for the safe delivery of these girls. They wouldn’t have stood a fighting chance without His hand involved in every step along the way. But He is good and faithful, and we are definitely blessed beyond measure. We wish we could open up visits to see the girls to everyone, but because that would greatly increase their risk of exposure to disease we have decided to allow only immediate family to see the girls at this time. And once we get them home we still have to limit who can see them for several months to prevent their immune systems from becoming compromised. I really hope it doesn’t offend anyone, and we ask for your patience on this while we get the girls good and healthy. I can’t wait to see their budding personalities and discover who they each will become. We love you all and are so blessed to call you friends. Thank you again!