Friday, February 24, 2012

Welcome Home Millie

Sorry for the delay in posting this week. You'd think I had four kids or something. Millie is home! We thought we were bringing both girls home, but I have been a nervous wreck about Ruby. She has been dropping her sats after eating all week. She comes up eventually, but to watch her dip down in the 50's and bounce between 50 and 70 % for several minutes is pretty scary. It's odd because she has no trouble when she is actually eating, but afterwards when she needs to burp she tends to hold her breath. Our primary nurse has been out for 8 days and she was back today. She expressed concerns about it, because Ruby was still on oxygen with feeds the last time she worked. We both talked to the neonatologist about it today, and he suggested they keep Ruby for several days to watch it. The MD was actually there when I was feeding her and it happened today, so it was good for him to see it first hand. After looking at her chart he thinks she might just be over feeding. Apparently she is taking in about 30% more than they expect. She is "ad lib" feeding, so she can eat as much as she wants. She comes by that honestly! I was sad to leave her in the NICU but honestly pretty relieved. I am hoping that this will improve and she will be home in a few days. 

We're so excited to have Millie home. She's only been home 6 hours, and we've already had to change her clothes 3 times due to blow outs. The girls are on a 4 hour schedule right now which is pretty dreamy. I'm not sure that it will last when they "wake up" more, but it does make things easier. My boys always ate every 3 hours, so we'll see. We were worried about Emmett's reaction, but when he got up from his nap his Mimi (my Mom) and his Daddy were home in addition to me and Mamie (our nanny - not her real name but what Emmett calls her), so he was pretty excited. He looked at Millie and said "baby" but that was about it. Jake came home from school and went immediately to a swim lesson, so he didn't even really see her. By the time he got home she was asleep in her bassinet. Speaking of Jake, he has had 2 probable seizures this week, so please continue to pray for him. More on that later.

The hospital photographer took some pictures of the girls this morning. Wow - those have come a long way. I didn't even order any with Jake because they were so horrible and no one offered to take Emmett's pictures. These were pretty professional and they took multiple pictures. I snapped a few with my I-Phone during the session. 

Welcome Home Millie. We miss you Ruby.

Sunday, February 19, 2012

Growing Girls

The girls are packing it away lately. Millie is 5 lbs 6 oz and Ruby is 4 lbs 14 oz! They are really filling out, and the preemie clothes actually fit now. They have been doing better since their setback, although just when I start to think things are really better they have a bad day. Millie is being weaned off the oxygen, but she still has the nasal cannula at a low flow and mostly room air O2. She needs more during and after feeds. Her nurse yesterday thought she was having some reflux, because after eating it seemed like she was swallowing a lot. Ruby has just been needing O2 when eating, but yesterday the nurse was able to feed her without O2 until the feeding I tried to do. She actually seems fine when eating, but she holds her breath when she needs to burp, and she kept dropping her sats after eating too. I'm wondering if both girls have reflux, but that's not a term they throw around lightly in the NICU, so we'll see. It does seem like they have both had more trouble since going to the open crib. In the isolate their beds were at a 30 degree angle and now they are flat. They will not elevate the open cribs, because they don't want you doing that when you go home (SIDS risk).

(Thanks to Liz H for these adorable onesies!)

Jake ended up staying two nights at Vandy. I was not planning on that. I had packed us up and had one foot out the door when the MD came in and recommended another night. They just wanted to make sure they captured everything they could. Jake did not have an actual seizure while we were there, but the EEG showed increased electrical activity/sparking in the right posterior brain. The MD recommended starting another medication. He said that leaving Jake off medication is not an option because most likely the seizures will increase and spread to deeper areas of the brain and be even harder to control. Jake was actually really good while we were at the hospital. By day 2 he was definitely ready to leave, but overall he was pretty content. Getting all the glue out of his hair is another story. Jake is also still limping. I took him to the orthopedic on Friday and they x-rayed his hip, knee and foot but nothing showed up. I think the limp is worse and it is really worrying me. He does not seem to be in pain, but he is not walking well. If it does not improve then we'll have to go back to the MD. Jake can't seem to catch a break lately.

We would appreciate prayers for Jake and the girls as well as their caregivers. We have been blessed with amazing nurses and doctors, but pray for them as they make decisions for all the kiddos.

Last but not least Emmett continues to get into trouble on a daily basis. I really find him hilarious, and it's so fun to see him develop. Everything is so hard for Jake that we marvel at Emmett when things come so easily for him.

"Who me? I have no idea how these spaghetti noodles got all over the floor."

Tuesday, February 14, 2012

Jake's EEG

One hour in it was looking like this:

Jake actually looks ok in this picture but it was mostly crying and kicking and trying to get those electrodes off or to get the techs to stop messing with his head. I just had to hold him tight. Afterwards he was very still and quiet for about 20 minutes just watching the Vecta machine (bubbles and lights) they brought in to distract him. I think he was so worn out from all the crying. Eventually he started playing and moved from the bed to the floor and back. The electrodes are attached to a long cord that allows him to move around pretty easily.

Jake ate a good dinner and Scott came to visit. He got several visits from Child Life (our nanny used to work for Child Life so we got primo star status!) and even got a pillow pet as a Valentine's Day present. He does not seem to be very bothered by the electrodes now.

As I write, Jake is supposed to be going to sleep. He is quiet but still rolling around. I am praying for a restful night for him. We should know the results of the EEG in the morning. I want to sincerely thank all of you for your prayers, notes, messages etc. It really gave me strength today as I got closer and closer to our 2 pm start time, and I felt empowered by all the good thoughts circling around me. It really does make a difference.

Millie and Ruby are doing better. Millie is on continuous oxygen although at a low flow and Ruby gets oxygen when she eats. Millie is getting a bottle every other feeding and Ruby is getting a bottle every feeding. The MD assures us that they will get back to where they where before the setback, but they need a little more time. Millie weighs 5 lbs and Ruby weighs 4 lbs 9 oz!

Ruby sucking her thumb today!


Emmett in motion about to pounce on Avery!

Happy Valentine's Day! Love, The Doolots

Monday, February 13, 2012

It's a Marathon, Not a Sprint!

Anyone who has had a significant NICU experience will tell you it's a marathon and not a sprint. Setbacks are expected, there will be ups and downs etc etc. I have been feeling pretty blessed that our journey has seemed so straight forward -  with each obstacle expected and then goal met and we moved on. My girls are clearly sprinters I thought. I tend to be slightly on the competitive side (ok a lot), and I have found myself wondering things like, "What's the fastest a 27 weeker has ever made it out of the hospital? Maybe my girls will be the record for the fastest NICU stay." The past 5 days have been a big reality check and reminder that it just doesn't go like that with preemies.

Last Thursday Millie started having some episodes of bradycardia (low heart rate) and apnea (low oxygen) spells. She seemed lethargic and was not feeding well. The MD ordered labs and it showed inflammation and possible infection. She said it might just be from the vaccinations that she got, but they needed to do a septic work up just in case. This meant that Millie got a lumbar puncture and urine culture, and they started antibiotics until those labs came back (which take 48 hours). This sounds over the top, but you have to take infection pretty seriously in the NICU. Babies can get infections which can lead to significant illness, disability and mortality. Her labs did not end up showing any infection, so after 48 hours her antibiotics were stopped. Unfortunately she has continued to be puny and need some help breathing, and she is back to getting a bottle every other feeding (they had increased her to bottles at every feed). We don't really know the cause - whether it was the vaccinations or her just getting worn out or reflux when eating - lots of possibilities. I talked to the neonatologist today, and she reminded me that this is the usual course for preemies. She said that we got a taste of how good they could do which makes this setback hard, but if they were able to do it before (be off oxygen and take their feeds well) then they can do it again. She also said that after a setback it takes awhile for preemies to get back to where they were - it's never an instant bounce back. We're still 3 1/2 weeks from their due date.

Ruby seemed to sail through the weekend. She finally made it to an open crib (current weight today is 4 lbs 7 ounces) and take all her feedings by bottle. They even took her feeding tube out! She was on course to come home this week, then she had a spell yesterday where she dropped her heart rate and oxygen. This means an automatic 5 more days assuming she has no more spells. They call this "spell count down." Since yesterday she has had a hard time keeping her oxygen up when eating. She seems to need to burp, but can't burp then holds her breath and stops breathing well. Today she kept dropping down into the 30's (normal is 90-100%) and turning blue. It was terrible. I was feeding her, and I felt so helpless. The nurse kept coming over and giving her oxygen through a mask. We would get her up and start feeding again, and it would happen again. The same thing has been happening with Millie, but since she has a nasal cannula the nurse just turned up her oxygen while I fed her. After the bad feeding with Ruby this morning, the nurse asked for an order to put her on oxygen while she feeds. Their nurse called me tonight to tell me that her next feeding went much better. So....definitely not coming home this week. That is fine with me. I don't want them coming home until they are stable. I was sweating and having terrible anxiety during both girls feedings this morning. It's just so crazy how different this week is from last week when they were downing their bottles without any problems and not on oxygen. Of course, they were not taking every feed by bottle, so maybe it has worn them out and they need some catch up time. Millie's weight today was 4 lbs 15 ounces!

Jake got new braces and shoes last week. His PT decided to change up the type of foot brace he has because he has been turning his foot out. He has not been as steady in his new braces, because he has to get used to a different feel in them. Starting last night it went from instability to actual limping. It continued this morning so we switched him back to his old braces. I went to school and his teacher and I watched him walk in his new braces, his old braces and barefoot and the limp persisted. I took him to the MD this afternoon. He does not seem to be in any pain, so we decided to give it a few days. Jake has broken his foot twice in the past so I am nervous about this, but both times he fell and I don't know of any specific fall this time. We're going to keep him in his old braces for a few days and see if it gets better.

Tomorrow I am taking Jake to the Children's Hospital at 2 to start his 24 hour EEG. This is where they put leads all over his head to measure brain waves and look for seizures. They will also have a video camera on him, so that if there is an event then they can see what he was doing at the time. He will be able to get out of bed, but not leave the room. Jake is very sensitive about having his head touched, so I am really dreading it. It's going to be very difficult to keep him entertained and keep him from pulling all the leads off. I also just realized that I will have to pump multiple times while we're there. Hope they don't get that on the video camera. Please pray that it will not be as bad as I am expecting it to be. Thanks, Elizabeth

Wednesday, February 8, 2012

2 Months (Almost)

Millie and Ruby will be 2 months old tomorrow. It's hard to believe that in a "normal pregnancy" they would still not be here. They both got their 2 month vaccinations yesterday and today. They split them up and the girls got 3 shots yesterday and 2 today. The girls did great and only cried for a second. The nurses gave them sugar drops to suck on which really helped. I was kangarooing with Ruby when Millie got her shots. They brought her over to me so I could hold her for a few minutes. She's still a good bit bigger than Ruby, but she looks huge in this picture because she is all wrapped up in blankets and closer to the camera. Ruby let out a few cries as if to say excuse me "sista" but this is my time. Their coloring is also different, because Millie is still a little anemic despite her transfusion.

The girls were also given orders today to take all their feedings by bottle (if they can). Millie did not finish her 11 am feeding, but she did well with her 2 pm, and Ruby was doing well with her feedings when I left. They will try to feed them with bottles, but if it takes too long then they can always put the rest in their feeding tubes. They won't remove the feeding tubes until the girls have proven they can take all the feedings without any problems. Still no word on actual discharge. Millie needed a little blow by oxygen the other night so this is another thing that cannot happen for 5 to 7 days before discharge, so we'll see. We'll have a better idea next week.

Millie from the Hood

Cookies for the Nurses tomorrow to celebrate the girls' 2 Month Bday
These were made by the talented Maggie Jackson of Sweet Cheeks Cookie Co!

Jake is still off his seizure medication. He is doing ok. He has moments of fussiness that we can't figure out but not as bad as it was when he was on Vimpat. His teachers say he seems a little more focused, which is good. We have his 24 hour EEG tentatively scheduled for this Tuesday, so Jake and I will have a Valentine's Day date at the hospital. Tentatively scheduled because we have to get insurance approval and this is last minute, but I wanted to get this done before the girls come home. Hopefully it will work out. 

Saturday, February 4, 2012

Open Crib

Millie made it to an open crib today. She looks like such a big girl. She has to hold her own temperature, so she is wearing a onesie, footy pajamas, and is covered with two blankets. We'll see how she does. Sometimes babies go back and forth for awhile. She weighs 4 lbs 6 oz! Just look at those cheeks filling out.

Ruby did fine with her transfusion. She did get some Lasix to help with the extra fluid, but she did not have to go back on the nasal cannula like Millie did with her transfusion. She weighs 3 lbs 11 oz. She lost a little weight during the transfusion because she couldn't eat, so now she is caught back up.

We moved rooms again. I thought we wouldn't have to move again, but the census is down and we're in a room with 4 other babies! I would be upset about the noise, but while I was there my girls monitors were beeping constantly, so we were making the most noise out of the 6. The monitors beep when the O2 sats drop below 87. My girls constantly go up and down. It is not considered a true "desat" unless they stay down and don't bring themselves back up, but the monitor goes off every time it drops. Very loud and annoying.

It's starting to hit me that the girls are actually going to be coming home. It has felt like such a long way off for so long, that I have put off dealing with the logistics of it all. Since we were out of our house this Fall, and I was on bed rest I never put together their nursery. Never to the rescue and boxes have been arriving daily. They won't tell me when the girls are coming home because they can't, but I do know that when they can hold their temp in an open crib and take all their bottles by mouth then that's the magic ticket. I think it may be sooner that we thought.

Jake is doing better. He is currently off all seizure medication. He has been a little hyper, but otherwise eating better and not too fussy. His MD wants him to do a 24 hour EEG at Vanderbilt. I think that makes sense, because he has not had an EEG in several years. That will tell us if he is having subclinical seizures. I hope we can get this scheduled before the girls get home, but that may not happen. That will be a very "un fun" 24 hours, but we'll get through it. Jake is sleeping in our room for now on a little blow up bed. We're always on seizure watch, but right now more so than normal.

Wednesday, February 1, 2012

Ruby's Turn

Little Ru Ru is getting a blood transfusion today. Her hematocrit has been hovering just above the level that they like to transfuse, and she dipped down to the transfusion level today. Our nurse was able to get her IV in one stick and she will get two rounds of blood 8 hours apart. She can't eat for 24 hours, so she will probably not be very happy with that. I was able to give her her last bottle at noon today before they started giving her the blood. She is taking her bottles really well. She and Millie are both getting 2 bottles/day. Millie only took half her bottle yesterday, before she got too tired. Our nurses say that Ruby continues to be the feisty one! She weighed 3 lbs 11 oz today and Millie is 4 lbs 2 oz!

This is a picture of Ruby today. She is wearing a little hospital gown that Scott's Aunt Charlene made her. This was after our nurse got her IV placed.

Millie taking a snooze.

Although I worry about the girls all the time, Jake continues to be my biggest worry. He has had several episodes of "abnormal motor movement." It's hard to explain but he will kick his feet, slap his arm and roll his head around in repetitive movements. He has done it twice at school and once at home, but he did it for three hours straight at home. I am not convinced that it is not seizure activity, but his neurologist thinks it is a reaction to the new seizure medicine we started him on. He has been on it a few weeks and his mood has been so much better. The last two weekends have been great, because normally he cries/screams for 4-5 hours/day, and he hasn't done that, but now we have a new problem. We have stopped his medicine and we are giving it a few days to see what happens. If the episodes stop then I guess it probably was the medication. Today he had a small episode at school, then he was very weepy and almost listless at home this afternoon, and he has not been eating much. I don't know what to think. It is heartbreaking and scary, so we could use your prayers that we can find a solution.

Emmett has a cold this week. It only slowed him down for 1 day. Here he is taking a break with our dog Avery. Avery will be 13 this Spring and she is so sweet and lets Emmett crawl all over her.